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Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You’ll meet the scientists who are creating tomorrow’s MS treatments today. You’ll hear from the experts discussing how the latest tweaks and changes to our healthcare laws will impact your MS treatment. And we’ll be talking to the courageous MS warriors who are out there advocating on behalf of the MS community every day, as well as the men and women who are committed to living their best lives with MS and living their best lives as MS caregivers. If you're dealing with multiple sclerosis in your life -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS.
- 466 - Episode 377: The Art of Hope with Lydia Emily
There are some people who, once you meet them, it's impossible to forget them. They seem to leave an indelible impression. Lydia Emily is one of those people. Whether it's through her art that occasionally escapes the canvas to be expressed as massive urban murals proclaiming End MS, or through her outspoken MS advocacy. Lydia Emily is a force. Now, along with co-author Lenlee Keep, Lydia Emily has channeled that energy into a book entitled, The Art of Hope: The Life and Art of Lydia Emily.
Lydia Emily and her co-author, Lenlee Keep, join me this week to talk about the process of writing the book and some of the issues affecting people with MS that Lydia Emily is passionate about.
We'll also tell you about study results that provide an answer to how nerve cells die in MS.
We'll share results from a study that shows MS progression may not be directly connected to the number of lesions someone may have.
And we'll tell you about research that provides evidence for continuing your MS disease-modifying therapy, no matter your age.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Art of Hope :22
A study uses a novel mouse model to explain how nerve cells die in MS 2:17
Study results show that MS progression may have less to do with the number of lesions and more to do with what's happening inside those lesions 5:23
Study results provide evidence for continuing your DMT, even as you age 9:15
Artist Lydia Emily and co-author Lenlee Keep discuss The Art of Hope: The Life and Art of Lydia Emily 14:17
Share this episode 34:50
Have you downloaded the free RealTalk MS app? 35:11
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Just copy this link & paste it into your text or email: https://realtalkms.com/377
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Remyelination Protects Neurons from DLK-Mediated Neurodegeneration https://www.nature.com/articles/s41467-024-53429-5
STUDY: Advanced MRI Measures of Myelin and Axon Volume Identify Repair in Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/ana.27102
STUDY: Impact of Discontinuing Disease-Modifying Therapies On Healthcare Utilization Among Midlife Patients with Multiple Sclerosis in the United States https://www.jmcp.org/doi/10.18553/jmcp.2024.30.11.1248
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 377 Guests: Lydia Emily and Lenlee Keep
Mon, 18 Nov 2024 - 36min - 465 - Special Episode: Pregnancy and MS with Dr. Riley Bove
MS affects almost 3 times as many women as men, often affecting women of childbearing age. In this special episode of RealTalk MS, Dr. Riley Bove answers some of the important questions about the impact of MS on a woman's pregnancy and the impact of pregnancy on a woman's MS.
This special episode of RealTalk MS is sponsored by Viatris.
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Just copy this link & paste it into your text or email: https://realtalkms.com/V201
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode V201 Guests: Dr. Riley Bove
Thu, 14 Nov 2024 - 21min - 464 - Episode 376: Adding Dance, Music, and Art Therapy to Your MS Treatment Plan with Dr. Francois Bethoux
On this podcast, we tend to talk a lot about new technologies, emerging treatments, the most recently approved disease-modifying therapies, and even some DMTs that haven't yet been approved. And in the midst of all that cutting-edge research and evolving science, it's easy to lose sight of the fact that expressive therapies like dance and movement therapy, music therapy, and art therapy have all been shown to help promote self-efficacy, emotional well-being, and motor control in people living with MS.
Dr. Francois Bethoux joins me on today's episode to discuss the benefits of integrating dance and movement therapy, music therapy, and art therapy into your treatment plan to help manage your MS symptoms and enhance your well-being.
November is National Family Caregivers Month, and we're sharing a neat piece of tech that can not only make life easier for MS caregivers but can make life better for their care recipients, as well. CEO Costin Tuculescu introduces us to his company's new device, OnScreen.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Adding expressive therapies to your MS treatment plan :22
OnScreen CEO Costin Tuculescu explains how OnScreen can help people with MS and their caregivers 1:34
Dr. Francoi Bethoux discusses the benefits of dance therapy, music therapy, and art therapy for people living with MS 17:45
Share this episode 31:47
Have you downloaded the free RealTalk MS app? 32:06
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Just copy this link & paste it into your text or email: https://realtalkms.com/376
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
OnScreen https://onscreeninc.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 376 Guests: Costin Tuculescu and Dr. Francois Bethoux
Mon, 11 Nov 2024 - 33min - 463 - Episode 375: Managing Teenage MS with Dr. Ann Yeh
Being a teenager is hard. So, imagine for a moment that in addition to everything else that teenagers have to endure, you're a teenager who's been diagnosed with MS. Your ability to participate in after-school activities or just hang out with your friends is impacted by MS-related fatigue. The typical adolescent anxiety over something someone posted on social media evolves into depression. And cognitive issues begin to make it harder for you in the classroom. This is an unfortunate reality for many adolescents who are living with MS.
Joining me to discuss how MS affects adolescents and how families can help manage MS is Dr. Ann Yeh. Dr. Yeh is a Professor of Pediatric Neurology at the University of Toronto and the director of the MS and Neuroinflammatory Disorders Program and Fellowship Program at the University of Toronto's Hospital for Sick Children, known as SickKids.
We'll also tell you about a new online resource for MS care partners.
We'll share the results of a study that explored how different symptom management responsibilities impact MS care partners.
We'll share details of a study that demonstrated positive results in improving MS-related fatigue.
We'll tell you about the discovery of a plant-based molecule that is showing promise in promoting myelin repair.
And we're sharing surprising research results that have more than doubled the prevalence of MS in Australia.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing Teenage MS :22
November is National Family Caregivers Month 1:47
You're invited to preview MS Care Partner Connection 3:40
A study reveals the most challenging MS symptoms for care partners to manage 6:33
Study results show Modafinil and cognitive behavioral therapy are both effective in managing MS fatigue 7:25
Researchers discover a plant-based molecule that may be effective in promoting myelin repair 9:46
Prevalence of MS in Australia more than doubled over an 11-year period 12:54
Dr. Ann Yeh discusses the challenges of MS among adolescents 16:05
Share this episode 31:15
Have you downloaded the free RealTalk MS app? 31:36
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/375
ADD YOUR VOICE TO THE CONVERSATION
I've always considered the RealTalk MS podcast a conversation. This is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The MS Care Partner Connection https://mscarepartnerconnection.com
Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis
STUDY: Symptom Management Among Multiple Sclerosis Care Partners in Canada https://meridian.allenpress.com/ijmsc/article/25/6/281/496792/Symptom-Management-Among-Multiple-Sclerosis-Care
STUDY: Comparative Effectiveness of Cognitive Behavioural Therapy, Modafinil, and Their Combination for Treating Fatigue in Multiple Sclerosis (COMBO-MS): A Randomised, Statistician-Blinded, Parallel-Arm Trial https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00354-5/abstract
STUDY: Distinct Chemical Structures Inhibit the CEMIP Hyaluronidase and Promote Oligodendrocyte Progenitor Cell Maturationhttps://www.jbc.org/article/S0021-9258(24)02418-9/fulltext
STUDY: Significantly Increasing Multiple Sclerosis Prevalence in Australia from 2010 to 2021 https://journals.sagepub.com/doi/10.1177/13524585241265890
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 375 Guest: Dr. Ann Yeh
Mon, 04 Nov 2024 - 32min - 462 - Episode 374: Grieving When You're Living With MS with Dr. Holly Hendin
Learning to live with MS is learning to live with loss. For some, those losses may be minor and seem relatively insignificant. For others, those losses can be huge and life-altering. The definition of grief is an emotional response to a significant loss. It's not unusual to grieve over those things in your life that have been lost due to MS. In fact, healthy grieving is a necessary emotional step to moving forward in life.
Dr. Holly Hendin, a faculty physician and psychiatrist at St. Joseph’s Hospital Medical Group Outpatient Behavioral Health in Phoenix, Arizona, joins me to explore grieving when you live with MS.
We'll also share the results of a study that show other health conditions can have a negative impact on MS disease activity, like relapses and disability worsening.
And we're sharing the details of the $4.6 million dollar investment the National MS Society is making in research focused on myelin repair.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Grieving when you're living with MS :22
A study shows how other health conditions may cause MS to worsen 2:00
The National MS Society is investing $4.6 million dollars in research focused on myelin repair 6:21
Dr. Holly Hendin helps us understand the importance of healthy grieving when you're living with MS 9:39
Share this episode 35:30
Have you downloaded the free RealTalk MS app? 35:50
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Just copy this link & paste it into your text or email: https://realtalkms.com/374
ADD YOUR VOICE TO THE CONVERSATION
I've always considered the RealTalk MS podcast a conversation. This is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Comorbidity and Disease Activity in Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2823966
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 374 Guest: Dr. Holly Hendin
Mon, 28 Oct 2024 - 37min - 461 - Episode 373: ECTRIMS Research Roundup Part 2 with Dr. Bruce Bebo
Now that he's had a chance to digest all of the research presented at ECTRIMS, Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research, is back to share the key research presented at the largest MS research conference in the world.
This episode of RealTalk MS is the perfect follow-up to my initial conversation with Bruce, which occurred just minutes after ECTRIMS ended. (If you missed our conversation, you may want to check out Episode 369 of RealTalk MS.)
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Part 2 of our coverage of ECTRIMS 2024 :22
Dr. Bruce Bebo shares the key research presented at ECTRIMS 1:06
Share this episode 26:13
Have you downloaded the free RealTalk MS app? 26:31
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Just copy this link & paste it into your text or email: https://realtalkms.com/373
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo https://realtalkms.com/369
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 373 Guest: Dr. Bruce Bebo
Mon, 21 Oct 2024 - 27min - 460 - Episode 372: Medicare Changes That Will Affect You in 2025 with Sarah Anderson
Open enrollment is underway! And if you're one of the 25% of people living with MS who get their coverage through Medicare, there are some major changes coming in 2025. So, it's especially important that you review your prescription drug coverage to make sure you're enrolled in the Medicare Part D plan that's best for you.
Sarah Anderson, pharmacist and senior director of clinical resources and programming at the National MS Society, joins me to help us decipher those changes and navigate the sometimes confusing world of health insurance.
We'll also tell you about a research team that's editing human DNA to promote myelin repair.
We'll share the results of a study that offers some surprising evidence about the quality of MS care for women in France.
We'll explain why a study that shows people with MS are at a higher risk for being diagnosed with cancer may not be as scary as it sounds.
In my conversation with Dawn Schottlandt, you'll hear the story of In My Running Shoes and learn how people with MS and other disabilities can benefit from their work.
And we'll give you all the details about artist Elizabeth Jameson's exhibition, An Intimate Journey, which opens in New York on Saturday, October 19th.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Open Enrollment has begun :22
Researchers succeed in editing human DNA to promote myelin repair 1:14
Research reveals women with MS are often undertreated in France 3:38
Are people with MS more likely to develop cancer? 6:18
Dawn Schottlandt explains why she founded In My Running Shoes and how you might benefit 9:12
Elizabeth Jameson's art exhibition, An Intimate Journey, opens in New York on Saturday 16:01
Sarah Anderson explains the changes to Medicare in 2025 18:04
Share this episode 27:56
Have you downloaded the free RealTalk MS app? 28:16
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/372
ADD YOUR VOICE TO THE CONVERSATION
I've always considered the RealTalk MS podcast a conversation. This is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: CRISPR-Edited ES-Derived Oligodendrocyte Progenitor Cells Improve Remyelination in Rodents https://www.nature.com/articles/s41467-024-52444-w
STUDY: Cancer Risk Among Patients with Multiple Sclerosis https://www.neurology.org/doi/10.1212/WNL.0000000000209885
In My Running Shoes https://inmyrunninigshoes.org
Elizabeth Jameson exhibition at the Positive Exposure Gallery https://positiveexposure.org/event/41014
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 372 Guests: Dawn Schottlandt and Sarah Anderson
Mon, 14 Oct 2024 - 29min - 459 - Episode 371: A Difference-Making Mobility Device with Dee Ecklund and BE Alink
In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker.
One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And Dee's initial DM led to my conversation with Dee and the inventor of the Alinker, a true difference-maker, BE Alink.
The National MS Society's 3rd annual Hispanic/Latinx MS Experience Summit is just two days away! We're sharing all the details, including how you can register for this free virtual event.
And I'm sharing my thoughts following attending the University of Pittsburgh's bi-annual caregiver research conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
The Hispanic/Latinx MS Experience Summit is two days away! :22
Don't miss our ECTRIMS Extra Conversations 1:38
Thoughts following attending the caregiver research conference at the University of Pittsburgh 2:15
Dee and BE discuss all things Alinker (including how you can get yours!) 9:26
Share this episode 37:02
Have you downloaded the free RealTalk MS app? 37:23
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/371
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience
MS Care Partner Connection https://mscarepartnerconnection.com
The Alinker https://thealinker.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 371 Guests: Dee Ecklund and BE Alink
Mon, 07 Oct 2024 - 38min - 458 - ECTRIMS Extra: Results from the Tolebrutinib Phase 3 Clinical Trial for Relapsing MS with Dr. Jiwon Oh
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh.
Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael’s Hospital in Ontario, Canada. Dr. Oh is also the Principal Investigator in Gemini, the Phase 3 clinical trial for Tolebrutinib and relapsing-remitting MS.
At ECTRIMS, Dr. Oh shared the outcome of the Gemini clinical trial.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims244
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guest: Dr. Jiwon Oh
Thu, 03 Oct 2024 - 08min - 457 - Episode 370: Understanding the Updated Pathways to Cures Research Roadmap with Dr. Bruce Bebo and Shawna Golden
In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in Episode 125 of RealTalk MS.
The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In Episodes 297and 298 of RealTalk MS, I shared news and interviews from what I described as yet another historic meeting.
The Pathways to Cures Research Roadmap has been updated, and I'm devoting this week's episode of RealTalk MS to my conversation with the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and the MS Society's Vice-President of Global Initiatives, Shawna Golden, to bring us up to date on how this global MS research initiative has been refined and enhanced and how it's resetting the global MS research agenda.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Pathways to Cures research roadmap has been updated :22
Dr. Bruce Bebo and Shawna Golden discuss the refined and enhanced Pathways to Cures research roadmap 2:34
Share this episode 29:58
Have you downloaded the free RealTalk MS app? 30:18
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/370
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 125: From the Pathways to Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 297: From the Pathways to Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 370 Guests: Dr. Bruce Bebo, Shawna Golden
Mon, 30 Sep 2024 - 31min - 456 - ECTRIMS Extra: Revisions to the Way MS is Diagnosed with Dr. Peter Calabresi
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Peter Calabresi.
Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine. He is the principal investigator on several clinical trials and oversees research projects focused on developing new anti-inflammatory and neuroprotective therapies for MS.
At ECTRIMS, Dr. Calabresi co-chaired what was probably the most highly anticipated presentation at this year's conference: the unveiling of updated criteria for diagnosing MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guest: Dr. Peter Calabresi
Sat, 28 Sep 2024 - 09min - 455 - ECTRIMS Extra: Rachel Horne and Professor Kerstin Helwig
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Rachel Horne and Professor Kerstin Hellwig.
Professor Kerstin Hellwig is the 2024 recipient of the Rachel Horne Prize for Women's Research in MS. Professor Hellwig was honored at ECTRIMS for her pioneering research into understanding and navigating the safety of approved treatments for women with MS before, during, and after pregnancy.
Professor Hellwig is a senior consultant at St Josef Hospital, Ruhr University, Bochum, Germany, specializing in MS and neuroimmunology, and is a leading clinician-scientist in the field of MS and family planning.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims242
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guests: Rachel Horne, Professor Kerstin Hellwig
Wed, 25 Sep 2024 - 11min - 454 - Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo
ECTRIMS 2024, the largest MS research conference in the world concluded last week, and in this week's episode, we'll be hearing two slightly different perspectives on which news, announcements, and presentations stood out at this year's meeting.
The ECTRIMS conference can feel almost overwhelming. You find yourself among 9 or 10 thousand other attendees, trying to determine which of the more than 1700 scientific presentations you want to learn more about. It's both a marathon and a sprint that seem to be taking place simultaneously.
Kristine Werner Ozug is a member of the RealTalk MS team and a person who lives with MS. This week, Kristine shares her perspective on attending ECTRIMS for the first time.
At the conclusion of ECTRIMS, you can almost hear a collective sigh coming from all the attendees. It feels like you've crossed the finish line, but now the work of sorting and processing all that you've seen, heard, and read over what feels like a non-stop 72-hour blur actually begins.
Joining me to share his initial thoughts on the ECTRIMS news that caught his eye is the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: ECTRIMS 2024 :22
It's our 7th anniversary! 1:28
Kristine Werner Ozug shares a patient's perspective on attending the largest MS research conference in the world 3:56
Dr. Bruce Bebo shares the news and announcements that caught his eye at ECTRIMS 17:19
Share this episode 28:59
Have you downloaded the free RealTalk MS app? 29:19
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Just copy this link & paste it into your text or email: https://realtalkms.com/369
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 369 Guests: Kristine Werner Ozug, Dr. Bruce Bebo
Mon, 23 Sep 2024 - 30min - 453 - ECTRIMS EXTRA: New Course Descriptors for MS with Dr. Fred Lublin
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Fred Lublin.
Dr. Fred Lublin is the Director of the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai. He participated in the development of the very first disease-modifying therapy that was approved for MS. When we talk about relapsing-remitting MS, secondary-progressive MS, or primary-progressive MS, we're using the clinical course descriptions of MS that were developed and subsequently updated by Dr. Lublin and his colleagues.
At ECTRIMS, Dr. Lublin gave a presentation on the need to update the way we think about and talk about multiple sclerosis by, once again, updating those clinical course descriptors.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
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ADD YOUR VOICE TO THE CONVERSATI
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guest: Dr. Fred Lublin
Sat, 21 Sep 2024 - 07min - 452 - Episode 368: Living a More Purposeful Life with MS with Dr. Evan Smith
Living with the unpredictability of MS sometimes feels like riding a rollercoaster. As you experience the twists and turns of life with MS, you can sometimes feel unmoored from the person you thought you were. You can sense your priorities, motivations, and values shifting. And, in those moments, it becomes easy to lose your sense of purpose.
Clinical assistant professor and rehabilitation psychologist at the University of Michigan, Dr. Evan Smith, joins me to discuss how to identify and reconnect with your core values and live a more purposeful and satisfying life.
We'll also tell you about Creating Order, an art exhibit featuring 12 artists living with MS. (Don't miss our conversation with the co-curators and lead artist in this unique exhibit!)
And we're sharing the details of MS Stand Up, a night of comedy and cocktails at the Gotham Comedy Club.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Greetings from ECTRIMS! :22
Our 7th anniversary is one week away! 2:00
Coming Up: The importance of staying connected to your core values 2:30
Creating Order art exhibit features 12 artists living with MS 3:35
My conversation with Creating Order co-curators Pam Schoenberg and Ted Meyer, and lead artist, Susan Trachman 4:27
MS Stand Up is happening September 30 at the Gotham Comedy Club 15:24
Dr. Evan Smith discusses how to lead a purposeful life while living with MS 16:54
Share this episode 33:17
Have you downloaded the free RealTalk MS app? 33:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/368
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Creating Order exhibit at the DNJ Gallery https://dnjgallery.net
MS Stand Up https://msstandup.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 368 Guests: Pam Schoenberg, Ted Meyer, Susan Trachman, Dr. Evan Smith
Mon, 16 Sep 2024 - 34min - 451 - Episode 367: Budgeting for Living with MS with Bruce McClary
Living with MS is expensive. A recent study funded by the National MS Society found the average cost of living with MS in the United States is $88,487 a year. Even with insurance, that can turn out to be a heavy lift.
One thing you don't need is to be worrying about money while you're already worrying about MS. So, when I think about discussing budgeting and managing your personal finances when you're living with MS, I think we're really talking about preserving your quality of life.
Joining me with strategies for budgeting and managing debt when you're living with MS is the Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary.
We'll also tell you about the updated Pathways to Cures Research Roadmap and the first ever global landscape analysis of MS research funding.
We're sharing very encouraging results from the Phase 2 open-label extension study of Fenebrutinib, an experimental BTK inhibitor.
We'll give you the details of a pilot study that demonstrated what may be a successful treatment for sexual dysfunction among men and women living with MS.
We'll tell you why middle-aged people with MS may want to consider resistance training.
And we'll tell you how to register for the National MS Society's Voting Without Barriers webinar.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Budgeting for Living with MS :22
The Pathways to Cures Research Roadmap has been updated and refined 1:25
There's very encouraging news from the Phase 2 open-lable extension study of Fenebrutinib 5;31
Results from a pilot study point to successful treatment for sexual dysfunction among men and women living with MS 6:35
Study results show that resistance training is beneficial for middle-aged people with MS 9:52
We're 8 weeks away from election day in the U.S. and the National MS Society is hosting a webinar about access to polling places 11:36
Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary, shares tips and strategies for taming your household budget and budgeting for living with MS 15:49
Share this episode 33:16
Have you downloaded the free RealTalk MS app? 33:36
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/367
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 297: From the Pathways To Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298
The Refined Pathways To Cures Research Roadmap https://journals.sagepub.com/doi/10.1177/13524585241266483
The First Global Landscape Analysis of Multiple Sclerosis Research Funding https://journals.sagepub.com/doi/full/10.1177/13524585241265961
STUDY: Tibial Nerve Stimulation in the Management of Primary Sexual Dysfunction in Patients with Multiple Sclerosis: A Pilot Randomized Control Trial https://link.springer.com/article/10.1007/s10072-024-07687-2
STUDY: Is Resistance Training an Option to Improve Functionality and Muscle Strength In Middle-Aged People with Multiple Sclerosis? A Systematic Review and Meta-Analysis https://www.mdpi.com/2077-0383/13/5/1378
REGISTER for the Voting Without Barriers Webinar https://p2a.co/Dqy1Xpk
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 367 Guest: Bruce McClary
Mon, 09 Sep 2024 - 34min - 450 - Episode 366: Medicare and MS -- Getting Your Ducks In a Row with Laquel Thomas
Most of us know Medicare as health insurance for Americans who are 65 or older, but when they qualify for Social Security disability benefits, people younger than 65 automatically qualify for Medicare. Today, between 25 and 30% of the people living with MS are Medicare beneficiaries.
Whether you already have Medicare or you'll be signing up for Medicare in the future, getting the right coverage requires making some important choices.
Licensed Medicare Advisor Laquel Thomas joins me with tips, strategies, and explanations for successfully navigating Medicare and getting the coverage you need.
We’re explaining the good news in the results from a Phase 3 clinical trial for Tolebrutinib, Sanofi’s experimental oral BTK inhibitor. The trial showed that, compared to placebo, Tolebrutinib met the primary endpoint, delaying the onset of confirmed disability progression in people with non-relapsing secondary progressive MS.
Take My Hand is an Australian film based on the true story of Claire Jensz, a mother of three living in London who is diagnosed with MS at the peak of her high-powered career. Be sure to catch my conversation with Claire, Radha Mitchell, the film's star, and John Raftopoulos, the film's director.
We're sharing the details of a study that may have uncovered an underlying cause of MS and, perhaps, all autoimmune diseases.
We'll tell you about the results of a stem cell study that show MS may involve more than just immune cells.
And we'll give you what may be surprising details of a study that focused on how MS impacts the quality of life of fully ambulatory people living with mild MS symptoms.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Making the right Medicare choices :22
There's good news about the results of the Phase 3 clinical trial for Tolebrutinib 1:41
My conversation with the director, star, and woman whose story about living with MS is the real-life basis for the new film, Take My Hand 4:28
Have researchers at Yale discovered an underlying cause of MS? 14:11
Newly published results of a stem cell study show that MS may also be driven by brain cells 17:19
Study results show how MS impacts the quality of life among fully ambulatory people with mild MS symptoms 19:15
Licensed Medicare Advisor, Laquel Thomas, explains all the variables you want to consider in making choices about your Medicare coverage 22:12
Share this episode 33:40
Have you downloaded the free RealTalk MS app? 34:01
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Just copy this link & paste it into your text or email: https://realtalkms.com/366
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
TRAILER: Take My Hand https://youtu.be/PdNMb7-AeEs
STUDY: An Autoimmune Transcriptional Circuit Drives FOXP3+ Regulatory T-Cell Dysfunction https://www.science.org/doi/10.1126/scitranslmed.adp1720
STUDY: Patient iPSC Models Reveal Glia-Intrinsic Phenotypes in Multiple Sclerosis https://www.sciencedirect.com/science/article/abs/pii/S1934590924002881
STUDY: Determinants of Self-Perceived Quality of Life in Mildly Disabled Multiple Sclerosis Patients: A Cross-Sectional Study https://pubmed.ncbi.nlm.nih.gov/38526763
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 366 Guest: Claire Jensz, John Raftopolous, Radha Mitchell, Laquel Thomas
Mon, 02 Sep 2024 - 35min - 449 - Episode 365: It's the Episode Where I Get Interviewed with Jon Strum
If you're a regular listener, you know that I rely on the RealTalk MS listener community to let me know which topics you'd like to hear about on this podcast. A few years ago, in episode 264, listener Dawnia Baynes did a podcast takeover, and interviewed me. Since then, I've heard from a bunch of you who, for some reason, want to hear more about me. So, when listener Kyra Millich asked if she could interview me, it felt like it was time.
In today's episode, you'll find out what I like to do when I'm not doing this podcast, I'll share some of the most memorable moments in my life, you'll hear how and why I started RealTalk MS, and I hope you'll get to know me a little better.
You'll also hear about results from a study that show people with MS are far less likely to be diagnosed with Alzheimer's disease compared to people who don't have MS.
We'll tell you about a Phase 1 clinical trial for a CAR-T cell therapy for MS.
And you'll learn the details of a different Phase 1 clinical trial for a different CAR-T cell therapy for MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Jon gets interviewed :22
Study results show people with MS are less likely to get Alzheimer's disease than people who don't have MS 1:23
TG Therapeutics announces Phase 1 clinical trial of CAR-T cell therapy for MS 3:44
FDA clears Immpact Bio for Phase 1 clinical trial of CAR-T cell therapy for hard-to-treat MS 7:13
Listener Kyra Millich interviews Jon 8:48
Share this episode 40:03
Have you downloaded the free RealTalk MS app? 40:23
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/365
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Unexpected Low Rate of Amyloid-β Pathology in Multiple Sclerosis Patients https://onlinelibrary.wiley.com/doi/10.1002/ana.27027
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 365
Mon, 26 Aug 2024 - 41min - 448 - Episode 364: Understanding the Signs and Symptoms of MS with Dr. Leorah Freeman
Getting an MS diagnosis is not always the quick, straightforward process we'd like it to be. For some people, the process can drag on for years. But getting that diagnosis only happens when you and your primary care physician recognize that something's going on.
It might be a sudden vision issue. Maybe it's unexplained tingling in an arm or leg. Or maybe it's something more acute that gets your attention. A wide variety of signs could point to MS, but they could also point to other health conditions.
Dr. Leorah Freeman, Director of the Multiple Sclerosis and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin, joins me this week to help us better understand the signs and symptoms of multiple sclerosis.
Just as COVID-19 viral activity is increasing across the United States, we're sharing the results of a study that should put your mind at ease and motivate you to get that COVID-19 booster vaccination when it becomes available next month.
We'll tell you about a Phase 1 clinical trial that's getting underway for a novel cell therapy that may be effective in stopping MS.
You'll hear about a grant from the National Institutes of Health that will fund a study on the fear of falling among people with MS.
The 16th annual Burgers to Beat MS fundraising event is taking place on August 22nd at A&W locations across Canada. We'll give you the details on how you can participate -- whether you happen to be in Canada or not!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Understanding the signs and symptoms of MS :22
Study results show no increase in the risk of an MS relapse after COVID-19 vaccination booster 1:43
Phase 1 clinical trial of a novel cell-based therapy for MS is underway 4:12
NIH grant to investigate the fear of falling among people with MS 7:13
Burgers to Beat MS is happening at A&W locations across Canada on August 22nd! 9:28
Dr. Leorah Freeman discusses the sometimes confusing signs and symptoms of MS 11:09
Share this episode 28:36
Have you downloaded the free RealTalk MS app? 28:56
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/364
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Risk of Relapse After COVID-19 Vaccination Among Patients with Multiple Sclerosis in France https://www.neurology.org/doi/10.1212/WNL.0000000000209662
Burgers to Beat MS https://burgerstobeatms.ca
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 364 Guest: Dr. Leorah Freeman
Mon, 19 Aug 2024 - 30min - 447 - Episode 363: Safe Driving When You're Living with MS with Jenny Nordine, OTL, CDRS
For some people, getting in their car and heading for, well, anywhere represents freedom and independence. For others, it's a way to get to their jobs, get to their medical appointments, get the kids to school, and run necessary errands. MS can change all of that.
Occupational Therapist and Certified Driver Rehabilitation Specialist Jenny Nordine joins me to discuss how to preserve your independence while protecting yourself and the people around you when you're driving with MS.
You'll also meet Dr. Susan Seizer, a true difference-maker and one of the founders of the Mobility Aids Lending Library.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Maintaining your independence and keeping yourself and others around you safe when you're driving with MS :22
Dr. Susan Seizer discusses the Mobility Aids Lending Library and the stigma of disability 1:26
Occupational Therapist and Certified Driver Rehabilitation Specialist, Jenny Nordine, discusses how to preserve your independence while protecting yourself and the people around you when you're driving with MS 20:35
Share this episode 31:25
Have you downloaded the free RealTalk MS app? 31:45
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/363
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Mobility Aids Lending Library https://mcpl.info/commorg/mobility-aids-lending-library-mall
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 363 Guest: Dr. Susan Seizer, Jenny Nordine OT/L, CDRS
Mon, 12 Aug 2024 - 32min - 446 - Episode 362: The Role of Integrative Medicine in Treating MS with Dr. Lynne Shinto
Integrative medicine brings conventional and complementary treatments together in a coordinated way. This approach to health and wellness represents a growing trend across the United States, especially among people who live with a chronic disease like MS.
Dr. Lynne Shinto joins me to explain what integrative medicine is and how to safely incorporate complementary treatments into your MS care plan.
We'll also tell you about study results that show how the common cold, flu, or a urinary tract infection can all contribute to MS worsening.
We'll tell you about the research team that has successfully used an artificial intelligence algorithm to predict future MS disability progression.
We'll share the details behind the work of another research team that successfully used an artificial intelligence algorithm to reliably diagnose MS.
The European Union's AI Act went into effect last week. We're explaining all the ways this new law will impact healthcare.
We have a lot to talk about! Are you ready for RealTalk MS??!
Remembering June Halper :22
This Week: Decoding Integrative Medicine 1:58
STUDY: Infections outside the central nervous system contribute to MS worsening 2:42
STUDY: Artificial intelligence model reliably predicts future MS disability progression 5:33
STUDY: Artificial intelligence model uses retinal imaging to reliably diagnose MS 7:51
How the European AI Act will impact healthcare 10:33
Dr. Lynne Shinto discusses the role of Integrative Medicine in treating MS 14:55
Share this episode 28:49
Have you downloaded the free RealTalk MS app? 29:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/362
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Systematic Inflammation Associates With and Precedes Cord Atrophy in Progressive Multiple Sclerosis https://academic.oup.com/braincomms/article/6/3/fcae143/7655554
STUDY: Longitudinal Machine Learning Modeling of MS Patient Trajectories Improves Predictions of Disability Progression https://pubmed.ncbi.nlm.nih.gov/34146771
STUDY: SLO-NET: Enhancing Multiple Sclerosis Diagnosis Beyond Optical Coherence Tomography Using Infrared Laser Reflectance Scanning Ophthalmoscopy Images https://tvst.arvojournals.org/article.aspx?articleid=2800432
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 362 Guests: Dr. Lynne Shinto
Mon, 05 Aug 2024 - 29min - 445 - Episode 361: Meet the new President and CEO of the National MS Society with Dr. Tim Coetzee
Less than two weeks ago, the National MS Society announced the appointment of Dr. Tim Coetzee as its new President and CEO. The MS Society's board chair, Peter Porrino, commented, "Tim is a trusted voice of the global MS community, a highly respected scientist, and we are excited for him to bring his transformative leadership to drive us into our next era to achieve a world free of MS."
I thought it was important for everyone in the RealTalk MS listener community to hear from Tim and learn firsthand what his vision and priorities are for the MS Society. So, I'm dedicating this entire episode to my conversation with the new President and CEO of the National MS Society, Dr. Tim Coetzee.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A conversation with the new President and CEO of the National MS Society, Dr. Tim Coetzee :22
Share this episode 28:32
Have you downloaded the free RealTalk MS app? 28:52
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/361
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 361 Guest: Dr. Tim Coetzee
Mon, 29 Jul 2024 - 30min - 444 - Episode 360: How Digital Technology Is Changing the Diagnosis and Treatment of MS with Dr. Riley Bove
It's hard to imagine any area of our lives that hasn't been transformed by digital technology. That's certainly true for healthcare in general and MS diagnosis and treatment in particular.
Dr. Riley Bove joins me to discuss the role that digital technology already plays in the diagnosis and treatment of MS and to share a preview of what's coming next.
The National MS Society has named its new President and CEO. We're sharing the details!
We'll tell you about some of the benefits that are being observed in the Phase 2 clinical trial and extension study of Frexalimab, an experimental antibody that may be on the path to becoming a highly effective disease-modifying therapy.
We'll share the details behind the FTC's planned lawsuit against the three largest Pharmacy Benefit Managers (and we'll tell you why that matters to anyone taking a prescription medication).
Stressing out about an upcoming MRI exam? We're sharing info about Happy MRI, a website that's been designed to relieve MRI-related anxiety.
And we're reminding you that Crush MS, the Napa Valley wine-tasting fundraising event, is happening this Saturday, July 27th. We'll let you know where to get your ticket!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The impact of digital technology :22
Dr. Tim Coetzee named the President and CEO of the National MS Society 1:50
Frexalimab shows significant benefits in Phase 2 clinical trial 4:08
FTC to file suit against three largest Pharmacy Benefit Managers 6:08
Happy MRI is designed to relieve MRI-related anxiety 8:03
We're just days away from Crush MS 9:47
Dr. Riley Bove discusses how digital technology is changing MS diagnosis and treatment 11:21
Share this episode 28:54
Next week: Newly named President and CEO of the National MS Society, Dr. Tim Coetzee, talks about his vision for the MS Society and shares his immediate priorities 29:14
Have you downloaded the free RealTalk MS app? 29:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/360
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 359: The Unraveling with Dr. Nara Michaelson https://realtalkms.com/359
Happy MRI https://happymri.com
CRUSH MS https://crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 360 Guests: Dr. Riley Bove
Mon, 22 Jul 2024 - 30min - 443 - Episode 359: The Unraveling with Dr. Nara Michaelson
As Harvard Fellow Dr. Nara Michaelson treated women who had been recently diagnosed with MS, she recognized they shared characteristics that she had observed in victims of violent domestic abuse. Dr. Michaelson's observation led her to write The Unraveling, an essay that highlights the fear that can accompany the uncertainty of living with MS.
Dr. Michaelson joins me to discuss the experiences that led to her award-winning essay and to share resources that can help maintain your emotional health and well-being in a good place when you're living with MS.
We're also sharing the details about BEAT-MS, a clinical trial that will compare autologous hematopoietic stem cell transplantation (AHSCT) with high-efficacy disease-modifying therapies when it comes to reducing or eliminating MS relapse activity. And we'll let you know how to find out if you could be a potential participant in this important clinical trial.
We'll tell you about the FDA approval granted to Abata Therapeutics to conduct a Phase 1 clinical trial of ABA-101, their experimental therapy for progressive MS.
We're sharing news about the Federal Trade Commission's newly released report on Pharmacy Benefit Managers. (And we'll tell you why this matters to every person in the United States who takes a prescription medication)
And we'll tell you about Take Charge, a new virtual program from Can Do MS that you can participate in at no cost!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Unraveling :22
BEAT-MS clinical trial compares AHSCT with high-efficacy DMTs 1:58
FDA clears ABA-101 for Phase 1 clinical trial 5:17
FTC is turning its focus to Pharmacy Benefit Managers 6:55
Can Do MS offers new Take Charge virtual program 11:47
Dr. Nara Michaelson discusses her award-winning essay, The Unraveling 13:23
Share this episode 29:15
Next week: Dr. Riley Bove discusses how digital technology has become a game-changer in diagnosing, treating, and managing MS 29:35
Have you downloaded the free RealTalk MS app? 29:55
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/359
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The Unraveling https://neurology.org/doi/10.1212/WNL.0000000000209492
BEAT-MS Clinical Trial https://beat-ms.org
RealTalk MS Episode 205: A Potentially Transformational Therapy for Progressive MS with Samantha Singer and Dr. Richard Ransohoff https://realtalkms.com/205
FTC Report -- Pharmacy Benefit Managers: The Powerful Middlemen Inflating Drug Costs and Squeezing Main Street Pharmacies https://ftc.gov/system/files/ftc_gov/pdf/pharmacy-benefit-managers-staff-report.pdf
REGISTER for Take Charge https://cando-ms.org/event/take-charge-young-and-newly-diagnosed
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 359 Guests: Dr. Nara Michaelson
Mon, 15 Jul 2024 - 31min - 442 - Episode 358: VISIBL-MS with Dr. Jaime Imitola
The inequities associated with gaining access to quality healthcare are often discussed, and my guest this week has taken steps to address them. Dr. Jaime Imitola and his team at UCONN Health have created a tool called VISIBL-MS, a bilingual framework designed to increase doctors' and patients' awareness of the early signs of MS.
We'll also share the results of a study that clearly illustrate progression independent of relapse activity (PIRA).
We'll tell you about a small study that showed a positive outcome for people with progressive MS who received neural stem cell therapy.
We'll share details of a study that identified a panel of 20 blood-based proteins that have been shown to be predictive of MS disease activity. (And we'll tell you why that's a good thing for patients and researchers!)
And we're reminding you that we're just over 2 weeks away from CRUSH MS!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: VISIBL-MS :22
Study results provide evidence of PIRA 1:41
Stem cell therapy for progressive MS? 4:28
Researchers identify a panel of 20 proteins that are predictive of MS disease activity 7:19
We're just over 2 weeks away from CRUSH MS! 10:07
Dr. Jaime Imitola discusses how VISIBL-MS will increase doctors' and patients' awareness of the early signs of MS. 11:35
Share this episode 31:33
Have you downloaded the free RealTalk MS app? 31:53
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/358
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VISIBL-MS: A Bilingual Educational Framework To Increase Awareness of Early Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/13524585241228739
STUDY: Acute Clinical Events Identified as Relapses with Stable Magnetic Resonance Imaging in Multiple Sclerosis https://pubmed.ncbi.nlm.nih.gov/38949816
STUDY: Phase I Clinical Trial of Intracerebroventricular Transplantation of Allogeneic Neural Stem Cells in People with Progressive Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1934590923003934
STUDY: Inflammatory and Neurodegenerative Serum Protein Biomarkers Increase Sensitivity to Detect Clinical and Radiographic Disease Activity in Multiple Sclerosis https://nature.com/articles/s41467-024-48602-9
CRUSH MS: Tickets and Info https://crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 358 Guests: Dr. Jaime Imitola
Mon, 08 Jul 2024 - 33min - 441 - Episode 357: Living Your Best Life When You're Living with MS with Dr. Lisa Doggett
When it comes to living your best life when you're living with MS, the first step is to make smart lifestyle choices. Maintaining a healthy lifestyle doesn't require pills, injections, or infusions. And making smart lifestyle choices can make a real, measurable difference in your quality of life.
Joining me to talk about the benefits of maintaining a healthy lifestyle and share some tips and strategies for living your best life when you're living with MS is Dr. Lisa Doggett, a family and lifestyle medicine physician at the MS and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin.
Dr. Doggett was diagnosed with MS in 2009, and she’s the author of the memoir, ‘Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis’.
We'll also tell you about a research team that's looking to improve the way that stem cells are transplanted -- and why that's a good thing for people with MS.
We'll share the details behind the European Union's approval of a new Ocrevus formulation that makes the DMT much more patient-friendly.
You'll hear about the blood test for measuring a biomarker that can predict future MS disease worsening that has just gained approval in the European Union.
And we'll tell you where to find the video replay of Mobility Challenges in Progressive MS, the most recent webcast hosted by the International Progressive MS Alliance.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Lifestyle changes that will improve your quality of life :22
Researchers receive a grant to develop a better way to transplant stem cells 1:30
Subcutaneous Ocrevus has been approved in the European Union 3:50
Blood test to measure a biomarker that can predict future MS disease worsening receives approval in the European Union 5:35
Catch the video replay of the latest Progressive MS Alliance webcast 7:13
Dr. Lisa Doggett offers strategies for making lifestyle choices that will make a difference in your quality of life 8:20
Share this episode 26:50
Next Week: Dr. Jaime Imitola introduces us to VISIBL-MS 27:10
Have you downloaded the free RealTalk MS app? 27:39
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/357
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VIDEO REPLAY of the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://youtube.com/watch?v=YGA-2k9JCLg&t=14s
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 357 Guests: Dr. Lisa Doggett
Mon, 01 Jul 2024 - 28min - 440 - Episode 356: A Final Conversation with National MS Society President and CEO, Cyndi Zagieboylo
Over the course of her 39-year career with the National MS Society, including the past 13 years as its President and CEO, Cyndi Zagieboylo has been a driving force behind major initiatives that have fundamentally changed the MS treatment and research landscape. Creating a world where cures for MS are now within reach, Cyndi has led the work to make living with MS better today than it's ever been.
On July 1, Cyndi is retiring from her remarkable career at the National MS Society. I had an opportunity to talk with Cyndi about the progress she's witnessed and the progress she has driven in leading the MS Society. It's been a career filled with so many moments that are worthy of celebration, I am devoting this entire episode of RealTalk MS to one last conversation with Cyndi Zagieboylo.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A final conversation with the National MS Society's President and CEO, Cyndi Zagieboylo :22
A look back at some of the most impactful initiatives that were led by Cyndi 1:43
Share this episode 30:39
Next Week: Lifestyle medicine physician Dr. Linda Doggett shares tips and strategies for making healthy lifestyle choices that will improve your quality of life 31:00
Have you downloaded the free RealTalk MS app? 31:50
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/356
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 356 Guest: Cyndi Zagieboylo
Mon, 24 Jun 2024 - 33min - 439 - Episode 355: The NARCOMS Patient Registry with Dr. Robert Fox
Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home.
My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry.
We'll also tell you about the latest version of AlphaFold, a highly advanced artificial intelligence model designed to help scientists design new drugs and target disease more effectively.
Evidence shows that the Epstein-Barr Virus (EBV) triggers MS. We're reviewing the results of a study that may help scientists better understand the relationship between EBV and MS.
The International Progressive MS Alliance upcoming webcast, Mobility Challenges in Progressive MS, takes place this Thursday, June 20th. Find out where you can register and why you won't want to miss this!
And we're just 6 weeks away from Crush MS, a fundraising event in Napa Valley, California that raises money to support MS research. I'll be there, and I hope you can join me! We're sharing all the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The NARCOMS Patient Registry :22
The most advanced AI on earth is focused on discovering new medications 1:40
Researchers learn that Epstein-Barr Virus re-activates and drives inflammation during an MS relapse 4:00
The Progressive MS Alliance hosts a live global webcast this Thursday, June 20th! 7:17
Crush MS is just 6 weeks away 8:39
Dr. Robert Fox takes us on a deep dive into the NARCOMS patient registry 10:08
Share this episode 26:12
Next Week: A special conversation with National MS Society President and CEO, Cyndi Zagieboylo 26:33
Have you downloaded the free RealTalk MS app? 27:17
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/355
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The NARCOMS Patient Registry https://www.narcoms.org
STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease https://nature.com/articles/s41564-024-01699-6
REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://msif.org/webcast-mobility
Get Tickets for Crush MS https://www.crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 355 Guests: Dr. Robert Fox
Mon, 17 Jun 2024 - 28min - 438 - Episode 354: From the Consortium of MS Centers 38th Annual Meeting -- Part 2
Two weeks ago, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. This is Part 2 of our coverage from that meeting.
In this episode, we're sharing our conversations with some of the experts who were at the meeting to present their research.
You'll hear the National MS Society's Executive Vice President for Advocacy and Healthcare Access, Bari Talente, share her thoughts on why getting early support when you've been diagnosed with MS can make a difference in how you begin your MS journey.
Dr. Nancy Sicotte talks about why early diagnosis and treatment are important in ensuring the best long-term patient outcomes.
Dr. Brian Sandroff asks and answers the question, "Does exercise improve cognitive function in MS?"
And Dr. Anthony Feinstein shares what he and his team have learned about how cannabis impacts people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Part 2 of our coverage of the CMSC Annual Meeting :22
National MS Society Executive Vice President for Advocacy and Healthcare Access, Bari Talente, discusses the importance of finding early support when you've been diagnosed with MS 1:18
Dr. Nancy Sicotte explains why early diagnosis and treatment make a difference in MS 8:57
Dr. Brian Sandroff poses (and answers) the question, "Doe exercise improve cognitive functioning in MS?" 17:11
Dr. Anthony Feinstein shares evidence gathered from his team's research into how cannabis impacts MS 23:58
Share this episode 38:13
Next Week: The North American Research Committe on Multiple Sclerosis (NARCOMS) with Managing Director, Dr. Robert Fox 38:34
Have you downloaded the free RealTalk MS app? 38:54
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/354
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 353: From the Consortium of MS Centers 38th Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger https://realtalkms.com/353
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 354 Guests: Bari Talente, Dr. Nancy Sicotte, Dr. Brian Sandroff, Dr. Anthony Feinstein
Mon, 10 Jun 2024 - 40min - 437 - Episode 353: From the Consortium of MS Centers Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger
Last week, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. Welcome to Part 1 of our coverage from that meeting.
In this episode, I'm talking with Dr. Kathy Zackowski, Associate Vice-President for Research at the National MS Society, and Dr. Zackowski is sharing some of the presentations that caught her attention.
Next, you'll hear my conversation with Dr. Stephen Krieger, a neurologist at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis. Dr. Krieger explains the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're reporting from the CMSC Annual Meeting :22
Dr. Kathy Zackowski shares some of the presentations that caught her attention 1:14
Dr. Stephen Krieger discusses the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal 18:56
Share this episode 33:36
Next Week: Part 2 of our coverage from the CMSC Annual Meeting 33:56
Have you downloaded the free RealTalk MS app? 34:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/353
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 353 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger
Mon, 03 Jun 2024 - 35min - 436 - Episode 352: World MS Day with Rachel Horne
May 30th is World MS Day, and we're taking this opportunity to look at some of the challenges faced by people with MS around the world. Global economics and the peculiarities of different healthcare systems make fundamental issues like access to quality healthcare and affordable MS medications difficult for many and impossible for some.
U.K. journalist and MS activist Rachel Horne joins me for a freewheeling conversation focused on the broad range of challenges that people with MS face every day.
We're also sharing details about the National MS Society's Black MS Experience Summit, which gets underway June 12th and 13th. Find out why you'll want to be part of this free virtual event.
We have a lot to talk about! Are you ready for RealTalk MS??!
The National MS Society's Black MS Experience Summit is happening June 12th and 13 :24
This Week: World MS Day is May 30th 2:07
Rachel Horne talks about some of the issues confronting people with MS around the world 8:10
Share this episode 26:51
Have you downloaded the free RealTalk MS app? 27:11
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Just copy this link & paste it into your text or email: https://realtalkms.com/352
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Black MS Experience Summit https://www.nationalmssociety.org/resources/get-support/education-programs-and-library/black-ms-experience
World MS Day https://worldmsday.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 352 Guests: Rachel Horne
Mon, 27 May 2024 - 28min - 435 - Episode 351: Managing Stress When You're Living with MS with Dr. Grace Tworek
We've reached a moment in time when it seems impossible to avoid at least some level of stress in our lives. We also know that stress has been shown to make MS symptoms worse and even trigger relapses. We can't eliminate all the stress in our lives, so learning how to manage and minimize stress is an important part of living well with MS.
This week, Dr. Grace Tworek, a Clinical Health Psychologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, joins me to talk about best practices when it comes to managing stress when you're living with MS.
We're also sharing details about the $649,000 grant made by the National MS Society to support the development of an experimental remyelination treatment.
If MS is detected early -- before an individual experiences even a single symptom -- and that individual is treated aggressively with a high-efficacy disease-modifying therapy, could that individual lead a life without experiencing any symptoms of MS? We'll tell you how that scenario is playing out right now.
We'll tell you about research that revealed differences in the connections between nerve cells in the brain based upon biological sex.
And we'll share survey results that show people with MS may be so embarrassed about some of their symptoms that they aren't discussing them with their care team.
We have a lot to talk about! Are you ready for RealTalk MS??!
The complexity of the human brain :22
This Week: Managing stress when you're living with MS 2:08
National MS Society invests $649,000 in experimental remyelination treatment 2:57
Stopping MS before symptoms start 4:32
Study shows that connections between nerve cells vary by biological sex 6:30
Are people with MS too embarrassed to discuss some of their symptoms with their care team? 8:31
Dr. Grace Tworek discusses strategies to manage stress when you're affected by MS 11:44
Share this episode 27:27
Have you downloaded the free RealTalk MS app? 27:47
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Just copy this link & paste it into your text or email: https://realtalkms.com/351
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
A Browsable Petascale Reconstruction of Human Cortex https://h01-release.storage.googleapis.com/landing.html
STUDY: Deep Learning with Diffusion MRI as In Vivo Microscope Reveals Sex-Related Differences in Human White Matter Microstructure https://www.nature.com/articles/s41598-024-60340-y
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 351 Guests: Dr. Grace Tworek
Mon, 20 May 2024 - 29min - 434 - Episode 350: Choosing Your MS Disease-Modifying Therapy with Dr. Barbara Giesser
There are more than 20 disease-modifying therapies available to treat MS today. Some are considered high-efficacy, some are considered moderately effective, and each has its own risk profile and side effects to consider. So, how do you choose?
How much homework should someone living with MS do? Where should you look for reliable information? And what if you and your neurologist don't necessarily agree?
Joining me to talk about your role when it comes to choosing the right DMT through shared decision-making with your neurologist is Dr. Barbara Giesser. Dr. Giesser is an internationally recognized clinician and award-winning educator who has specialized in the care of people with multiple sclerosis since 1982, a full decade before there was even a single disease-modifying therapy available to treat MS.
Dunk MS takes place This Saturday, May 18th on the UCLA campus, at iconic Pauley Pavilion. And if you're in or around Southern California, you won't want to miss this unique event. We're sharing all the details, so don't miss my conversation with Dunk MS founder, Blake Arnet.
Since we're talking about shared decision-making this week, we're sharing details of a study that asked the question, "How much do people living with MS know about MS?"
And if you've found yourself worried about smoldering MS, you'll be pleased to learn that a recent study showed that sophisticated PET imaging is able to identify this hidden, persistent inflammation in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
350 Episodes! :22
This Week: Finding the right DMT through shared decision-making 1:04
Dunk MS is just days away! My conversation with Blake Arnet 2:31
How much do people living with MS know about MS? 10:57
PET imaging reveals persistent hidden inflammation in MS 15:37
Dr. Barbara Giesser discusses choosing the right disease-modifying therapy through shared decision-making with your neurologist 20:04
Share this episode 33:13
Have you downloaded the free RealTalk MS app? 33:33
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Just copy this link & paste it into your text or email: https://realtalkms.com/350
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Get Your Tickets for Dunk MS https://dunkms.com
STUDY: A Systematic Review to Explore Patients' MS Knowledge and MS Risk Knowledge https://link.springer.com/article/10.1007/s10072-024-07541-5
STUDY: Glial Activity Load on PET Reveals Persistent "Smoldering" Inflammation in MS Despite Disease-Modifying Treatment https://journals.lww.com/nuclearmed/fulltext/2024/06000/glial_activity_load_on_pet_reveals_persistent.1.aspx
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 350 Guests: Blake Arnet and Dr. Barbara Giesser
Mon, 13 May 2024 - 34min - 433 - Episode 349: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 2)
As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently.
Just a couple of weeks ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how these many and varied changes can impact MS care.
In Part 2 of our coverage, we're taking you back inside this workshop, where you'll hear from some of the top MS researchers and clinicians who participated in this important meeting.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We continue our coverage of the Aging and MS Workshop :22
Dr. Sarah Morrow and Dr. Yinan Zhang discuss survey results which showed what neurologists and other members of the MS care team see as "gaps" in delivering treatment to patients as they age with MS 1:45
Dr. Giuseppe Portillo describes how artificial intelligence can be used to analyze "brain gap" and predict future MS disease progression 13:03
Dr. John Corboy shares results from two studies that focused on discontinuation of disease-modifying therapy for patients over the age of 60 20:31
Kathy Smith talks about the importance of including older people living with MS in clinical research 31:00
Share this episode 42:43
Have you downloaded the free RealTalk MS app? 43:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/349
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) http://www.realtalkms.com/348
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 349 Guests: Dr. Sarah Morrow, Dr. Yinan Zhang, Dr. Giuseppe Portillo, Dr. John Corboy, and Kathy Smith
Mon, 06 May 2024 - 44min - 432 - Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1)
As people age, their immune systems change. Their level of physical and cognitive reserve changes. They often develop additional health issues. They frequently experience changes in their mobility. And these are people who aren't living with MS.
When you combine the health issues related to aging with the health issues that are related to MS, you end up with a sum that is exponentially larger than its parts. And when you consider that there are more people living with MS who are over the age of 65 than there are people living with MS under the age of 45, it's not surprising that the subject of aging with MS has become an area of increasing interest among researchers, clinicians, and people affected by MS.
That's why, last week, the International Advisory Committee for Clinical Trials in Multiple Sclerosis invited a select group of 100 MS researchers and clinical specialists from around the world to participate in a three-day deep dive exploring aging and MS.
In Part 1 of our coverage, we're taking you inside this meeting, where you'll hear from some of the expert presenters who were in attendance.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the Aging & MS Workshop :22
Dr. Tim Coetzee shares some of the issues the meeting presenters and attendees will be focusing on 1:35
Dr. Jennifer Graves discusses the difference between chronological aging and biological aging, and how that difference impacts MS 9:29
Dr. Wallace Brownless talks about some of the challenges related to diagnosing and treating late-onset MS 14:33
Dr. Amit Bar-Or explains how the immune system changes over time, and how those changes can affect living with MS 21:36
Share this episode 28:04
Have you downloaded the free RealTalk MS app? 28:24
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Just copy this link & paste it into your text or email: https://realtalkms.com/348
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 348 Guests: Dr. Tim Coetzee, Dr. Jennifer Graves, Dr. Wallace Brownlee, Dr. Amit Bar-Or
Mon, 29 Apr 2024 - 29min - 431 - Episode 347: Vitamin D and MS with Dr. Ellen Mowry
Lower levels of Vitamin D have been associated with a higher risk of developing MS and an increase in MS disease activity. And, for years, scientists have worked to better understand the relationship between Vitamin D and MS.
Joining me to talk about the role that Vitamin D plays in MS is Dr. Ellen Mowry. Dr. Mowry is a Professor of Neurology and Epidemiology, and the Co-Director of the Multiple Sclerosis Precision Medicine Center of Excellence at Johns Hopkins University. Dr. Mowry is also one of the leading experts on Vitamin D and MS in the world.
The National MS Society's virtual MS Activist Rally is happening in just two days, on April 25th! We're sharing registration details.
We'll tell you about a scientific breakthrough that has identified a specific autoantibody signature that can accurately predict MS years before someone experiences any MS symptoms.
We're sharing details of a clinical trial that focused on the efficacy of Ocrevus in treating Black and Hispanic people living with MS. We'll also share the details of this trial's novel design that can serve as a blueprint for successfully engaging members of minority communities in future clinical research.
We'll explain one reason why we aren't hearing as much news about the benefits of using cannabis to treat MS symptoms, and why cannabis use may actually be creating a new set of problems for people living with MS.
And we're sharing study results that show that an artificial intelligence program may have a better bedside manner than your neurologist.
We have a lot to talk about! Are you ready for RealTalk MS??!
Don't miss it! The MS Activist Rally is happening on 4/25! :22
This Week: The relationship between Vitamin D and MS 2:50
Autoantibody signature predicts MS years before symtoms develop 3:45
Clinical trial results show that Black and Hispanic people with MS respond well to Ocrevus 7:58
Is cannabis working for people with MS? 11:13
Study results show that ChatGPT answers questions about MS with more empathy than neurologists 14:28
Dr. Ellen Mowry updates us on what the latest research is revealing about Vitamin D and MS 18:31
Share this episode 32:06
Have you downloaded the free RealTalk MS app? 32:26
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/347
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
STUDY: An Autoantibody Signature Predictive of Multiple Sclerosis https://www.nature.com/articles/s41591-024-02938-3
RealTalk MS Episode 346: Why Members of Minority Communities May Face a More Severe MS Disease Course with Dr. Annette Langer-Gould https://realtalkms.com/346
STUDY: ChatGPT vs Neurologists: A Cross-Sectional Study Investigating Preference, Satisfaction Ratings, and Perceived Empathy in Responses Among People Living with Multiple Sclerosis https://link.springer.com/article/10.1007/s00415-024-12328-x
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 347 Guest: Dr. Ellen Mowry
Mon, 22 Apr 2024 - 33min - 430 - Episode 346: Why Members of Minority Communities May Face A More Severe MS Disease Course with Dr. Annette Langer-Gould
In past episodes of this podcast, we've discussed disparities in healthcare. We've looked at evidence that shows members of historically underserved communities who are living with MS can face a more severe disease course. We've looked at studies that have shown some members of these racial and ethnic minority groups don't do as well on disease-modifying therapies, and their MS progresses more quickly.
It's often been speculated that the reason behind these disparities is based on genetics -- that members of minority communities who are living with MS are genetically predisposed to experiencing a more severe disease course.
My guest in this episode is Dr. Annette Langer-Gould, and Dr. Langer-Gould comes armed with evidence that points to a completely different set of answers for the cause of racial and ethnic disparities in MS disease severity and progression.
We're also sharing registration details for the National MS Society's MS Activist Rally on April 25th!
We'll tell you about an inverse vaccine that prevents the mouse model of MS (and we'll explain what an inverse vaccine is!)
You'll find out where you can find the just-released video progress report from the International Progressive MS Alliance.
We'll explain just-published results from an analysis that shows why anti-diabetic and weight-loss drugs like Ozempic, Jardiance, and Trulicity may be repurposed as MS therapies.
And we're sharing study results with both good news and not so great news when it comes to being diagnosed and treated for MS in a timely manner.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're exploring the reason that members of underserved minority populations who are living with MS often experience a more severe disease course :22
The MS Activist Rally is happening on 4/25! 1:28
An inverse vaccine prevents the mouse model of MS 3:49
The International Progressive MS Alliance has released their 2024 progress report 6:13
Can weight-loss drugs be repurposed as MS therapies? 7:33
A study shows that getting diagnosed and treated for MS is dependent upon your country's healthcare system 10:26
Dr. Annette Langer-Gould has a sobering answer as to why some members of minority communities who are living with MS experience a more severe disease course 14:48
Share this episode 31:31
Have you downloaded the free RealTalk MS app? 31:51
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/346
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
VIDEO: International Progressive MS Alliance 2024 Progress Report https://www.youtube.com/watch?v=4ojRaLp_J1w
STUDY: Exploring the Association Between Weight Loss-Inducing Medications and Multiple Sclerosis: Insights from the FDA Adverse Event Reporting System Database https://journals.sagepub.com/doi/10.1177/17562864241241383
STUDY: Disease-Modifying Therapy Initiation Patterns in Multiple Sclerosis in Three Large Populations https://journals.sagepub.com/doi/10.1177/17562864241233044
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 346 Guest: Dr. Annette Langer-Gould
Mon, 15 Apr 2024 - 33min - 429 - Episode 345: A Deep Dive into Women's Health and MS with Dr. Rhonda Voskuhl and Dr. Anna Shah
MS affects women almost 3 times more frequently than it affects men, which makes understanding how MS may impact other women's health issues a priority.
Dr. Rhonda Voskuhl and Dr. Anna Shah join me as we take a deep dive into both the research and clinical side of how MS affects women's health and how those other health issues may affect MS.
Dr. Shah is an Associate Professor of Neurology and Associate Clinic Director of Outpatient Neurology at the University of Colorado School of Medicine.
Dr. Voskuhl is the Director of the UCLA Multiple Sclerosis Program, she holds the Jack H. Skirball Chair in MS, she's a Professor in the UCLA Department of Neurology, and Dr. Voskuhl also serves as Faculty Neurologist of the UCLA Comprehensive Menopause Care Program.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into women's health and MS :22
Dr. Rhonda Voskuhl named the recipient of the 2024 John Dystel Prize for Multiple Sclerosis Research :52
Dr. Rhonda Voskuhl discusses her research looking at why MS affects men and women differently 2:32
Dr. Anna Shah discusses how MS can affect women's health issues and how those health issues can affect MS 13:21
Share this episode 32:40
Have you downloaded the free RealTalk MS app? 33:00
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Just copy this link & paste it into your text or email: https://realtalkms.com/345
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 345 Guests: Dr. Rhonda Voskuhl and Dr. Anna Shah
Mon, 08 Apr 2024 - 34min - 428 - Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini
If you're a regular listener, you've probably heard me say that the pace of scientific discovery is moving faster than ever before. Or you may have heard the National MS Society remind us that we've seen as many advances in MS research in the past 5 years as we have in the previous 70 years. Have you ever wondered why?
A major driver of this acceleration of discovery is the technology that allows scientists to analyze massive amounts of information looking for relationships or identifying characteristics that, without this technology, would be impossible to see.
This category of tech is commonly referred to as big data. And we're closer than we've ever been to understanding the biological complexities of multiple sclerosis because we've learned to harness the computing power that allows scientists to discover those very small needles among those very large haystacks.
My guest in this episode is Professor Sergio Baranzini. Professor Baranzini is this year's recipient of the Barancik Prize for Innovation in MS Research and he's someone who has successfully leveraged big data to drive big, game-changing discoveries in multiple sclerosis.
We'll also share some good news about MS research funding from the federal government.
We'll review newly published results from a study that has identified 3 subtypes of MS, each with a different disease trajectory.
We'll share evidence from a study that focused on whether people over the age of 50 with nonactive MS should discontinue their disease-modifying therapy.
And we'll tell you about the Canadian regulatory approval of a software-based medical device that can monitor MS disease activity by tracking eye movement -- all from an iPad that people with MS can use at home.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're saluting Professor Sergio Baranzini, this year's winner of the Barancik Prize :22
Congress provides $20 million in FY2024 funding for the MS Research Program 1:57
A German research team has identified 3 subtypes of MS based on their unique immune cell signature found in a blood sample 4:10
A French research team focused their study on whether people over the age of 50 with nonactive MS should discontinue their DMT. Here's what they discovered 8:58
Health Canada has approved ETNA-MS. A software-based medical device that can monitor MS disease activity by tracking eye movement 12:48
Professor Sergio Baranzini discusses how big data has fundamentally changed scientific research, and how he's using it to find cures for MS 16:44
Share this episode 32:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/344
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
STUDY: Multiple Sclerosis Endophenotypes Identified by High-Dimensional Blood Signatures are Associated with Distinct Disease Trajectories https://science.org/doi/10.1126/scitranslmed.ade8560
STUDY: High-Efficacy Therapy Discontinuation vs Continuation in Patients 50 Years and Older with Nonactive MS https://jamanetwork.com/journals/jamaneurology/article-abstract/2816799
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 344 Guest: Professor Sergio Baranzini
Mon, 01 Apr 2024 - 33min - 427 - Episode 343: Progressive MS Day with Kevin Reid
March 28th is Progressive MS Day, a day that offers an opportunity for people affected by MS, patient advocates, healthcare providers, governments, and industry to share stories online and show their support for people living with progressive forms of MS.
My wife, Jeanne, lived with progressive MS for 23 years, so this day holds a special significance for me. Joining me to talk about what Progressive MS Day is all about is my friend, Kevin Reid. Kevin was diagnosed with MS in 2002 and, for the past 10 years, he's been on a mission to crush MS.
As MS Awareness Month draws to a close, we're sharing a series of short videos featuring conversations I had with MS experts at the ECTRIMS congress. What makes this video series unique is that iConquer MS invited people living with MS to watch these videos. Then, I interviewed them to get their perspective on the topics the experts were discussing. It's the first time you'll not only hear from the experts, but you'll also get the thoughts and reactions of people who are living with MS.
We'll tell you about the neurostimulator that was just designated as a Breakthrough Device for promoting myelin repair.
We'll share the details of a newly announced Phase 2 clinical trial for a T-cell therapy for MS.
You'll hear about the study that identified a biomarker that reliably predicted the likelihood of future disease activity in people with MS.
And we'll tell you where you can catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: March 28th is Progressive MS Day :22
Have you seen the series of short videos featuring my conversations with MS experts at ECTRIMS along with the thoughts and reactions from people living with MS? 1:00
Catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars 1:57
FDA designates neurostimulator as a breakthrough device for promoting myelin repair in people living with relapsing-remitting MS 2:46
Biotech company PolTREG announces Phase 2 clinical trials to test their Tregs treatment for MS 5:28
Study shows neurofilament light chain levels can reliably predict future disease activity 7:10
Kevin Reid discusses the importance of Progressive MS Day and gives us a preview of CRUSH MS 10:35
Share this episode 28:09
Have you downloaded the free RealTalk MS app? 28:29
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Just copy this link & paste it into your text or email: https://realtalkms.com/343
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS https://youtu.be/eWoZLF4bZmo
VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study https://www.youtube.com/watch?v=UtGtCnNkYOY
VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions https://www.youtube.com/watch?v=J83jlqMbsZo
VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience https://www.youtube.com/watch?v=_fRLW69Xc1A
VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey https://www.youtube.com/watch?v=oZDdp8JumFg
VIDEO: ACTRIMS Forum 2024 Webcast Replays https://actrims.memberclicks.net/forum-patient-centered-webinars
STUDY: Prognostic Value of Serum Neurofilament Light Chain for Disease Activity and Worsening in Patients with Relapsing Remitting Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials https://pubmed.ncbi.nlm.nih.gov/35432382
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 343 Guest: Kevin Reid
Mon, 25 Mar 2024 - 29min - 426 - Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed
We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study.
Chiquita and Earl will discuss how they discovered the TEAAMS study, what motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them.
We'll also take you to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference.
It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS.
And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar :22
This Week: The patient perspective on participating in an MS research study 1:38
Live! From the Natinal MS Society's Public Policy Conference 2:28
People with MS weign in on the impact of several ECTRIMS presentations 10:17
Catch the video replay of the International Progressive MS Alliance webcast 11:35
Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study 12:11
Share this episode 27:18
Have you downloaded the free RealTalk MS app? 27:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/342
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index
VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS https://youtu.be/eWoZLF4bZmo
VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study https://www.youtube.com/watch?v=UtGtCnNkYOY
VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions https://www.youtube.com/watch?v=J83jlqMbsZo
VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience https://www.youtube.com/watch?v=_fRLW69Xc1A
VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey https://www.youtube.com/watch?v=oZDdp8JumFg
VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS https://www.youtube.com/watch?v=W4hxtl38MBQ
The TEAAMS Study https://projectteaams.ahs.uic.edu
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 342 Guests: Chiquita Shepard-Knight and Earl Sneed
Mon, 18 Mar 2024 - 28min - 425 - Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha
Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue.
Dr. Shiv Saidha joins me as we take a deep dive into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into managing MS-related vision issues :22
Doctor Shiv Saidha discusses how to best manage MS-related vision issues 1:17
Share this episode 29:44
Have you downloaded the free RealTalk MS app? 30:05
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/341
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 341 Guest: Dr. Shiv Saidha
Mon, 11 Mar 2024 - 31min - 424 - Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham
When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy.
Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially life-changing rehabilitation tools for people living with MS.
Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field.
Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into next-generation tools for MS rehabilitation :22
Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation 1:44
Share this episode 29:48
Have you downloaded the free RealTalk MS app? 30:08
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/340
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 340 Guest: Dr. Deborah Backus and Dr. Brad Willingham
Mon, 04 Mar 2024 - 31min - 423 - Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson
A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity, or PIRA, means and how it may or may not impact your MS journey.
And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS.
Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.
We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy.
We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce.
We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process.
And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: What is "Progression Independent of Relapse Activity"? 1:31
STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS 3:02
STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS 6:49
An AI tool has been developed that can predict an individual's MS disease course 9:17
SURVEY: Some people have mixed feelings about using AI in diagnosing illness 11:47
STUDY: Caffeine is shown to improve balance and mobility in people with MS 14:38
Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome 16:47
Share this episode 28:15
Have you downloaded the free RealTalk MS app? 28:35
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/339
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784
STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway https://journals.sagepub.com/doi/10.1177/13524585241231665
STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning https://link.springer.com/article/10.1007/s00415-023-12132-z
SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services https://clinicbyclevelandclinic.com/consumer-perceptions-report
STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 339 Guest: Professor Alan Thompson
Mon, 26 Feb 2024 - 29min - 422 - Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern
You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important.
The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern.
We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression.
We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance.
And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing.
We have a lot to talk about! Are you ready for RealTalk MS??!
Jeanne's Story :22
This Week: Inside MS advocacy and this year's Public Policy Conference 8:36
Experts publish an update on progressive MS research, identify lessons learned, and call out the remaining challenges 9:35
The International Progressive MS Alliance hosts a global webcast this Thursday 17:22
MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference 18:54
Share this episode 31:51
Have you downloaded the free RealTalk MS app? 32:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/338
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society: Become an MS Activist https://nationalmssociety.org/advocacy
PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis https://realtalkms.com/193
WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research https://www.msif.org/treatments-webcast/
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 338 Guest: Steffany Stern
Mon, 19 Feb 2024 - 33min - 421 - Episode 337: Aging With MS with Dr. Aaron Boster
We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions.
Is there a need to stay on disease-modifying therapy after the age of 60? How do we know whether a new symptom is a symptom of MS or a symptom of aging? Does an additional age-related health condition make treating MS more difficult? Does treating MS make treating that new health condition more difficult? How can we best offset the social isolation that's often associated with MS and with aging?
This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Aging with MS :22
Dr. Aaron Boster tackles the multifaceted subject of aging with MS 1:59
Share this episode 38:09
Have you downloaded the free RealTalk MS app? 38:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/337
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 337 Guest: Dr. Aaron Boster
Mon, 12 Feb 2024 - 39min - 420 - Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq.
When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead.
This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally, wrote the book for the National MS Society on applying for SSDI benefits.
We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in.
We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!)
We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA.
We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy.
And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How to apply for Social Security Disability Insurance benefits :22
This year's recipient of the Barancik Prize for Innovation in MS research 1:58
Real progress reported in efforts to penetrate the blood brain barrier 7:17
FDA gives Fast-Track designation to CAR-T cell therapy for MS 10:03
STUDY: Having a university education makes it more likely that someone with MS will be on a DMT 13:04
STUDY: Geographic proximity to MS care in the U.S. is far from equal 15:04
Disability law expert Jamie Hall discusses how to apply for SSDI benefits 19:29
Share this episode 38:01
Have you downloaded the free RealTalk MS app? 38:21
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/336
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf
Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509
STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register https://journals.sagepub.com/doi/10.1177/13524585231221411
STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States https://www.neurology.org/doi/10.1212/WNL.0000000000207916
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 336 Guest: Jamie Hall, Esq.
Mon, 05 Feb 2024 - 39min - 419 - Bonus Episode: MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne
This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.
In this special episode of RealTalk MS, Professor Alice Laroni and Rachel Horne join me to explore what happens at the time someone receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis.
We're also exploring what should be happening at the time of diagnosis and what needs to come next.
Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy.
Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology.
Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Thu, 01 Feb 2024 - 24min - 418 - Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster
How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're employed, you absolutely need to know and understand your rights in the workplace.
MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace.
I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???)
I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them.
We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!)
We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community)
Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost.
We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research.
And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Successfully navigating the health insurance maze :22
Why the MS Navigators are the gold standard when it comes to support for people affected by MS :56
Everything you need to know about the RealTalk MS show notes 2:12
STUDY: A wheat-free diet may reduce MS severity 5:28
Experts call for a new framework for describing Parkinson's Disease 8:31
A test to determine who is at high risk for contracting PML is available...at no cost 11:36
STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish 14:08
The Spanish Society of Neurology has updated its guidelines for treating MS 15:42
MS Navigator Christina Forster discusses your rights in the workplace 19:35
Share this episode 30:37
Have you downloaded the free RealTalk MS app? 30:57
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Just copy this link & paste it into your text or email: https://realtalkms.com/335
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Contact an MS Navigator Phone: 1-800-344-4867 Web via chat: https://nationalmssociety.org Email: contactusnmss@nmss.org
STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study https://journals.sagepub.com/doi/10.1177/17562864231170928
Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoencephalopathy_genetic_risk_variants_for_pharmacovigilance_of_immunosuppressive_therapies
No Cost PML Risk Genetic Test https://pmlrisktest.org
STUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation https://www.nature.com/articles/s41593-023-01553-8
Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023 https://www.sciencedirect.com/science/article/pii/S2173580824000191
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 335 Guest: Christina Forster
Mon, 29 Jan 2024 - 32min - 417 - Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek
Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment.
MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises."
We're also sharing study results that can help you get the most benefit from your everyday physical activity.
We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation.
We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS.
We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies.
And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Successfully navigating the health insurance maze :22
STUDY: The benefit of physical activity lies in step rate and not step count 1:42
Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation 3:47
STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS 5:41
You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company 8:50
Generics for Tecfidera have been delayed at least one year in Europe 10:47
MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs 12:03
Share this episode 26:46
Have you downloaded the free RealTalk MS app? 27:07
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Just copy this link & paste it into your text or email: https://realtalkms.com/334
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume https://pubmed.ncbi.nlm.nih.gov/38214757
Myrobalan Therapeutics https://myrotx.com
STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969
The Mark Cuban Cost Plus Drug Company https://costplusdrugs.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 334 Guest: Carla Turechek
Mon, 22 Jan 2024 - 28min - 416 - Episode 333: Improving Communication Between You and Your Neurologist with Dr. Luis Manrique-Trujillo
You've just had your appointment with your neurologist or MS Specialist and you're on your way home, feeling like you weren't heard. Maybe there wasn't sufficient time. Or it might feel like your opinion simply isn't valued. Your frustration could even be the result of language issues and cultural barriers that make communication difficult. Whatever the reason, it doesn't have to be this way.
Dr. Luis Manrique-Trujillo joins me this week to share tips and strategies that will improve the quality of communication between you and every member of your MS care team. Dr. Manrique-Trujillo is a neurologist specializing in neuroimmunology and multiple sclerosis at MedStar Georgetown University Hospital in Washington, D.C.
We're also sharing some fascinating research that traces the gene variants that increase someone's risk of developing MS all the way back to the Bronze Age.
We'll tell you about a small study that may explain how the Epstein-Barr Virus triggers MS.
We'll tell you about a class-action lawsuit that accuses Pharmacy Benefit Managers of illegal collusion and price-fixing. (And we'll explain why this lawsuit could be a huge step toward lowering the cost of your prescription medications)
And we're sharing our plans for RealTalk MS in 2024.
We have a lot to talk about! Are you ready for RealTalk MS??!
My New Year's Resolutions for RealTalk MS :22
This Week: Improving communication between you and your neurologist 4:59
STUDY: Ancient DNA reveals how MS risk genes arose and spread across Europe 5:59
STUDY: EBV-specific T-cells may play a key role in developing MS 9:36
An important class-action lawsuit has been filed against Pharmacy Benefit Mangers 11:18
Dr. Luis Manrique-Trujillo shares strategies for improving communication between you and your neurologist 15:41
Share this episode 34:19
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Just copy this link & paste it into your text or email: https://realtalkms.com/333
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations https://www.nature.com/articles/s41586-023-06618-z
STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells https://pnas.org/doi/abs/10.1073/pnas.2315857121
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 333 Guest: Dr. Luis Manrique-Trujillo
Mon, 15 Jan 2024 - 35min - 415 - Episode 332: Managing the Cost of Generic, Biosimilar, and Other Prescription Medications with Robin LaRue
If you remember your Economics 101 class, the introduction of generic and biosimilar drugs should cause prices to drop. Yet, when it comes to MS disease-modifying therapies that isn't always the case.
MS Navigator Robin LaRue joins me this week to discuss how to manage the sometimes crazy costs of MS prescription medications.
We're also sharing results from a study that show there is absolutely no association between consuming dairy and gluten products and MS disease activity.
We'll tell you about two different studies that suggest that non-pharmaceutical interventions may be effective in lessening MS fatigue.
We're sharing results from a trial that reveal an innovative approach to supporting MS caregivers.
And we'll tell you about 4.6 million euro in new funding from the International Progressive MS Alliance that will go toward research focused on developing new treatments for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing the cost of MS medications :22
STUDY: No association between consuming dairy and gluten products and MS disease activity 1:42
STUDY: SMS-messaging is shown to improve MS-related fatigue 4:50
STUDY: Talk therapy is shown to improve MS-related fatigue 8:36
STUDY: Remote coaching and online information improves the well-being of MS caregivers 10:43
International Progressive MS Alliance announces new research funding 13:32
MS Navigator Robin LaRue discusses how to manage the cost of MS prescription medications 15:57
Share this episode 27:48
Have you downloaded the free RealTalk MS app? 28:09
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Just copy this link & paste it into your text or email: https://realtalkms.com/332
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Dairy and Gluten in Disease Activity in Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/20552173231218107
STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study https://sciencedirect.com/science/article/abs/pii/S1936657423001310?via%3Dihub
STUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study https://journals.sagepub.com/doi/full/10.1177/13524585231213258
STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial https://meridian.allenpress.com/ijmsc/article/25/6/252/495534/Effect-of-2-Arm-Intervention-on-Emotional-Outcomes
International Progressive MS Alliance https://progressivemsalliance.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 332 Guest: Robin LaRue
Mon, 08 Jan 2024 - 29min - 414 - Episode 331: Becoming a Donor to the National MS Brain Bank with Dr. Claire Riley
This is the week that a lot of us make resolutions for the coming year. And I'm hoping that after you hear my conversation with Dr. Claire Riley, many of you will resolve to become donors to the National Multiple Sclerosis Brain Bank.
Resolving to donate brain and tissue to the National MS Brain Bank is a new year's resolution that goes far beyond the standard eat better and exercise more promises that so many of us make to ourselves every year. It's deeply meaningful, profoundly personal, and, as Dr. Riley describes it, it's a heroic step in choosing to play an important role in curing MS.
We're also sharing the details about a partial hold that the FDA has placed on another clinical trial for an experimental MS disease-modifying therapy.
And we'll share some potentially disturbing news about how artificial intelligence is being leveraged to deny patients medically necessary care.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Becoming a donor to the National MS Brain Bank :23
FDA puts a partial hold on Phase 3 clinical trial investigating Fenebrutinib 1:23
Are health insurers using AI for all the wrong reasons? 4:49
Dr. Claire Riley discusses why you should consider being a donor to the National MS Brain Bank 8:09
Share this episode 28:40
Have you downloaded the free RealTalk MS app? 29:01
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Just copy this link & paste it into your text or email: https://realtalkms.com/331
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The National Multiple Sclerosis Brain Bank https://msbraindonation.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 331 Guests: Dr. Claire Riley
Mon, 01 Jan 2024 - 30min - 413 - Episode 330: Revisiting How the Proposed Framework for Researching, Diagnosing, and Treating MS Will Affect You with Prof. Tanja Kuhlmann and Dr. Tim Coetzee
This week, I'm revisiting the proposal from the International Advisory Committee on Clinical Trials in MS that recommended adopting a new framework that leverages what scientists are continuing to learn about MS and redefines how we talk about MS, how we research MS, how we diagnose MS, and how we treat MS. This proposed framework holds the promise of taking MS care to the next level.
This new framework was first proposed in a paper published in November 2022, and last January, I spoke with the lead author of that paper, Professor Tanja Kuhlmann. We discussed why an international panel of distinguished MS experts was recommending changing something that has been in place for decades.
The following week, I reached out to the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, and we talked about how this new framework for describing MS would impact people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Revisiting the proposed framework for describing MS :22
Prof. Tanja Kuhlmann discusses why this new framework is necessary 1:46
Dr. Tim Coetzee talks about how this new framework will impact people living with MS 14:49
Share this episode 36:25
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Just copy this link & paste it into your text or email: https://realtalkms.com/330
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 330 Guests: Prof. Tanja Kuhlmann and Dr. Tim Coetzee
Mon, 25 Dec 2023 - 37min - 412 - Episode 329: Revisiting the Pathways To Cures Global Summit
The holiday season provides me with an opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes of the year to revisit the most compelling,and important conversations that I've had over the past year. This week, I'm revisiting the conversations I had at the Pathways To Cures Global Summit that took place in New York last May.
The National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.
I had the opportunity to speak with several of the top MS experts in the world at this meeting and, collectively, these are the conversations that have resonated with me all year long.
We have a lot to talk about! Are you ready for RealTalk MS??!
Happy Holidays! :22
This Week: Revisiting the Pathways to Cures Global Summit :54
My conversation with a distinguished group of CEOs representing 5 major MS Societies 2:55
Dr. Tim Coetzee discusses the current state of MS care and the work ahead 9:11
Kathy Smith shares her perspective on the Pathways to Cures Global Summit 13:54
Dr. Anne-Katrin Probstel talks about stopping MS 20:26
Dr. Naila Makhami discusses detecting MS early 31:36
Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways to Cures global research initiative 35:53
Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways to Cures initiative doesn't leave anyone behind 41:11
Share this episode 47:21
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Just copy this link & paste it into your text or email: https://realtalkms.com/329
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Learn more about Pathways To Cures https://www.nationalmssociety.org/pathways-to-cures
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 329 Guests: Cyndi Zagieboylo, Nick Moberly, Klaus Hom, Rohan Greenland, Dr. Pamela Valentine, Dr. Tim Coetzee, Kathy Smith, Dr. Anna-Katrin Probstel, Dr. Naila Makhami, Dr. Daniel Ontaneda, Dr. Mitzi Joi Williams
Mon, 18 Dec 2023 - 48min - 411 - Bonus Episode -- MS21: Patient Empowerment: Invisible Symptoms of MS with Professor Klaus Schmierer and Jane Shanahan
This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.
In this special episode of RealTalk MS, we're exploring what the invisible symptoms of MS are, and how to best empower people living with MS to talk about them with their healthcare team.
Professor Klaus Schmierer is a Professor of Neurology at the Blizard Institute, Queen Mary's Univerrsity of London and a Consultant Neurologist at the Royal London Hospital, which is part of Barts Health NHS Trust in the U.K. Professor Schmierer has a keen interest in MS and focuses his research on the underlying mechanisms of the disease and how to improve diagnosis with imaging tools, such as MRI.
Jane Shanahan is a patient advocate who was diagnosed with MS in 2016. Jane lives with her husband and two children. She has developed an interest in better understanding MS, as well as educating her family, friends, colleagues, and others about the disease.
Both Professor Schmierer and Jane are active members of the MS in the 21st Century initiative. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Wed, 13 Dec 2023 - 34min - 410 - Episode 328: Cognitive Rehabilitation and MS with Dr. Nancy Chiaravalloti
Cognitive dysfunction is a common symptom of multiple sclerosis, affecting more than half of the people living with MS. While cognitive issues like changes in memory, difficulty maintaining attention, slower information processing speed and executive function may not be among the most disabling symptoms of MS, they may be among the most disconcerting symptoms.
Whether it's your short-term memory, the ability to find your way to a familiar destination that you've gone to hundreds of times, or your ability to follow conversations with friends or business colleagues, these are the kinds of real-world situations that can bring someone to a hard stop, recognizing that they're changing in profound ways that aren't outwardly apparent. And that's a scary feeling.
Fortunately, researchers are making real progress in developing ways for people living with MS to improve their cognition. This week, Dr. Nancy Chiaravalloti joins me to talk about what researchers are learning and what types of cognitive rehabilitation are available today.
Dr. Chiaravalloti is the Director of the Center for Neuropsychology and Neuroscience Research and the Center for Traumatic Brain Injury Research at Kessler Foundation. Dr. Chiaravalloti's research is focused on ways to stimulate new learning, memory, and processing speed.
We're also sharing some promising results from a preclinical study of an investigational Epstein-Barr Virus vaccine (And we'll explain why this is so important to the MS community!).
Dr. Nuriel Moghavem will take us through a day in the life of an MS Fellow.
We'll share the disappointing results of the Phase 3 clinical trial for Evobrutinib.
And we'll tell you about super-small biological robots that seem capable of doing some amazing things -- including encouraging the growth of healthy nerve cells to replace damaged nerve cells.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Cognitive Rehabilition :22
Promising news from a preclinical study of an investigational EBV vaccine 2:08
A day in the life of an MS Fellow with Dr. Nuriel Moghavem 4:21
Evobrutinib Phase 3 clinical trial has failed to meet its end points 17:19
Biological robots assemble into a "superbot" and encourage the growth of healthy nerve cells 18:28
Dr. Nancy Chiaravalloti discusses breakthrough treatment for cognitive dysfunction in MS 21:19
Share this episode 31:48
Have you downloaded the free RealTalk MS app? 32:08
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Just copy this link & paste it into your text or email: https://realtalkms.com/328
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Motile Living Biobots Self-Construct from Adult Human Somatic Progenitor Seed Cells https://onlinelibrary.wiley.com/doi/10.1002/advs.202303575
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 328 Guests: Dr. Nuriel Moghavem and Dr. Nancy Chiaravalloti
Mon, 11 Dec 2023 - 33min - 409 - Episode 327: Cannabis and MS with Dr. Michelle Cameron
A growing number of people living with MS are turning to cannabis for symptom management. But which MS symptoms have responded to being treated with cannabis? Where should someone buy medical cannabis? And is using medical cannabis even legal?
Dr. Michelle Cameron returns to the podcast to discuss the risks and benefits of using cannabis for symptom management. Dr. Cameron is a neurologist and physical therapist, as well as a professor in the Department of Neurology at Oregon Health & Science University.
We're also sharing some long overdue good news from United Airlines for passengers who use wheelchairs.
We'll tell you about the first adaptive clinical trial for people living with progressive MS in Australia.
We'll give you the details of the FDA's clearance of an artificial intelligence platform designed to analyze MRI scans to detect and monitor MS disease activity.
And we're sharing promising results from a Phase 1 clinical trial that focused on using neural stem cells to stop disease progression among people living with secondary progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Cannabis and MS :22
United promises friendlier skies for wheelchair users 1:04
PLATYPUS adaptive clinical trial to begin in Australia 3:47
FDA approves artificial intelligence platform for detecting MS disease activity in MRI scans 5:34
Neural stem cell Phase 1 clinical trial shows encouraging progress 6:47
Dr. Michelle Cameron discusses the risks and benefits of using cannabis to manage MS symptoms 9:07
Share this episode 24:01
Have you downloaded the free RealTalk MS app? 24:22
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Just copy this link & paste it into your text or email: https://realtalkms.com/327
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Phase 1 Clinical Trial of Intracerebroventricular Transplantation of Allogenic Neural Stem Cells in People with Progressive Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1934590923003934
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 327 Guest: Dr. Michelle Cameron
Mon, 04 Dec 2023 - 25min - 408 - Episode 326: A Happy Ending That Almost Wasn't with Chris Holland
Chris Holland had a successful career working as a paralegal when he was diagnosed with MS in 2004. And, while everyone reacts differently to being diagnosed with MS, no one could have predicted what happened next, as Chris lost everything battling demons he never imagined he would ever face.
But it would be a mistake betting against Chris Holland's resilience. Bouncing back, Chris decided to pursue his lifelong dream of becoming a chef. Today, Chris is a three-time Food Network Chopped champion and the owner and executive chef at Kantina, in Sparkill, New York.
This week, Chris joins me to share a story with a happy ending that almost wasn't.
November is National Family Caregivers Month, which seems to be the perfect time for iConquer MS to expand its community to include MS caregivers. We're sharing all the details of the newly launched iConquer MS Caregivers initiative.
It's impossible to discuss caregiving without mentioning the lifelong contributions made by former First Lady Rosalynn Carter. This week, we're remembering Mrs. Carter and reflecting on her legacy.
And we'll tell you how Infusion Day actually became Spa Day in Dawson City, Yukon.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Chris Holland shares his remarkable story of resilience :22
November is National Family Caregivers Month 1:22
Remembering Former First Lady Rosalynn Carter 1:52
If you're caring for a loved one with MS, iConquer MS has set out a welcome mat 3:07
Infusion Day is now Spa Day in Dawson City, Yukon 7:13
Chris Holland talks about how he barely made it all the way back 9:34
Share this episode 28:24
Have you downloaded the free RealTalk MS app? 28:44
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Just copy this link & paste it into your text or email: https://realtalkms.com/326
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
iConquer MS Caregivers https://iconquerms.org/caregivers
PAPER: Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Caregiver Protocol https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 326 Guest: Chris Holland
Mon, 27 Nov 2023 - 29min - 407 - Episode 325: Making Your Home Safe and Accessible with Tracy Carrasco
According to the CDC, 36 million falls are reported each year, resulting in 3 million adults being transported to the Emergency Room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and 30% fall multiple times.
As falls at home are common, occupational therapist Tracy Carrasco joins me to share tips and strategies for making your home safe and accessible.
We're also sharing a research roundup featuring results from a few different clinical trials that are focused on the impact of diet on MS. And that includes the Swank diet, the Wahls diet, the Mediterranean diet, and a simple low-fat diet.
We'll tell you about a novel study that explored the economic impact of an Epstein-Barr Virus vaccine on the cost of MS care in Australia.
If you're living with MS, we have your invitation to participate in the Patient Reported Outcomes for Multiple Sclerosis (PROMS) initiative survey.
And we'll tell you how you can catch the video replay of the International Progressive MS Alliance global webcast on research and treatment for cognitive challenges in progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Some of the things I'm thankful for :22
Research Roundup: The impact of diet on MS 2:40
Survey results show how an EBV vaccine could impact the cost of MS care in Australia 9:03
If you're living with MS, here's your invitation to participate in the PROMS initiative online survey 12:22
How to catch the video replay of the International Progressive MS Alliance global webcast about research and treatment for cognitive challenges in progressive MS 13:38
Tracy Carrasco shares tips for making your home safe and accessible 15:25
Share this episode 27:26
Have you downloaded the free RealTalk MS app? 27:46
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Just copy this link & paste it into your text or email: https://realtalkms.com/325
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: A Low-Fat Diet Improves Fatigue in Multiple Sclerosis: Results from a Randomized Controlled Trial https://journals.sagepub.com/doi/10.1177/13524585231208330
STUDY: Diet-Induced Changes in Functional Disability are Mediated by Fatigue in Relapsing-Remitting Multiple Sclerosis: A Secondary Analysis of the WAVES Randomized Parallel-Arm Trial https://journals.sagepub.com/doi/full/10.1177/20552173231209147
STUDY: Exploring the Cost-Effectiveness of EBV Vaccination to Prevent Multiple Sclerosisin an Australian Setting https://jnnp.bmj.com/content/early/2023/11/02/jnnp-2023-332161
PARTICIPATE: The PROMS Initiative Survey https://proms-initiative.org/survey-proms
VIDEO: Cognitive Challenges in Progressive MS https://youtube.com/watch?v=bN26GrRZMts
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 325 Guest: Tracy Carrasco
Privacy PolicyMon, 20 Nov 2023 - 28min - 406 - Episode 324: Avoiding the Risks of Misdiagnosing MS with Dr. Andrew Solomon
MS is misdiagnosed too often, which leaves some people who don't have MS receiving expensive disease-modifying therapy that they don't need, while leaving other people who do have MS still not receiving treatment with a disease-modifying therapy that will slow disability progression and preserve their quality of life longer.
My guest, Dr. Andrew Solomon, is the lead author of a paper published by a team of international experts that provides updated guidance for healthcare professionals on clinical approaches to diagnosing MS. Dr. Solomon joins me to discuss why MS can be difficult to diagnose and how that situation can be improved upon.
We're also sharing the results of a study that showed how neurofilament light chain levels in the blood can predict MS disability progression one or two years before that worsening occurs.
For the past five years, we've been following the path of an investigative stem cell therapy through clinical trials. We'll tell you why the company behind this therapy announced it was stopping its Phase 2 trial.
If you're a female living with MS, we're sharing an invitation for you to participate in an important online survey about a topic that's too often overlooked.
And we'll tell you about the results of a study that underscore the value and importance of staying on your disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The risks of misdiagnosing MS :22
Results from a study show that neurofilament light chain level can predict future disability progression 1:37
We've been following an investigative stem cell therapy since 2018. Now, the company developing this therapy is ending the Phase 2 clinical trial 4:59
If you're a female living with MS, we have an invitation for you to participate in an important survey 7:15
Study results underscore the importance of staying on your disease-modifying therapy 9:01
Dr. Andrew Solomon discusses why MS is difficult to diagnose and what experts are doing about that 12:54
Share this episode 30:41
Have you downloaded the free RealTalk MS app? 31:02
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Just copy this link & paste it into your text or email: https://realtalkms.com/324
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Neurofilament Light Chain Elevation and Disability Progression in Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/article-abstract/2811628
SURVEY: Patient Education Preferences Regarding Sexual Health in Women with Multiple Sclerosis https://openredcap.nyumc.org/apps/redcap/surveys/?s=D7L4NKPWMJA98RXP
STUDY: Impact of Adherence to Disease-Modifying Drugs in Multiple Sclerosis: A Study on Italian Real-World Data https://www.sciencedirect.com/science/article/abs/pii/S2211034823005953
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 324 Guest: Dr. Andrew Solomon
Privacy PolicyMon, 13 Nov 2023 - 32min - 405 - Episode 323: Support for Veterans with MS with Izzy Abbass and a New Project for Jamie-Lynn Sigler
More than 70,000 U.S. veterans are living with MS. That's why the only federal funding specifically earmarked for MS research comes from the U.S. Department of Defense. It's why the U.S. Department of Veterans Affairs has established the Multiple Sclerosis Centers of Excellence. And it's why, in 2019, the National MS Society established a strategic partnership with the U.S. Department of Veterans Affairs.
This week, we're saluting the men and women of our armed services, and we're highlighting some of the resources available to U.S. veterans who are living with MS.
Izzy Abbass, the Co-Chair of the Paralyzed Veterans of America MS Committee, joins me to discuss all the ways the PVA assists U.S. veterans in obtaining their VA benefits.
We're also sharing the results of a study that compared the efficacy of being treated with autologous hematopoietic stem cell transplantation (aHSCT) and being treated with a high-efficacy disease-modifying therapy.
We'll tell you about the results of a study that may begin to explain why African Americans who are living with MS often experience a more severe disease course.
We'll give you the details about where and how to register for this Thursday's International Progressive MS Alliance's global webcast that's focused on treatments and new research for cognitive challenges in progressive MS.
And actress Jamie-Lynn Sigler is also joining me this week to talk about her MS journey and to share some news about a new project that she has developed for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Resources for U.S. Veterans living with MS :22
My guest, Izzy Abbass, explains how the PVA assists U.S. Veterans with MS in receiving their VA benefits 2:41
A study compared the efficacy of autologous hematopoietic stem cell transplantation (aHSCT) with a high-efficacy disease-modifying therapy 11:21
Results of a study may begin to explain why African Americans who are living with MS often experience a higher level of disease activity and faster disability progression 14:36
This Thursday, the International Progressive MS Alliance is hosting a global webcast exploring treatments and research focused on cognitive challenges in progressive MS 17:31
Jamie-Lynn Sigler discusses her new guide for people living with MS 19:13
Share this episode 30:25
Have you downloaded the free RealTalk MS app? 30:45
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/323
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society: Resources for U.S. Veterans with Multiple Sclerosis https://nationalmssociety.org/Resources-Support/Find-Support/Veterans-with-Multiple-Sclerosis
U.S. Department of Veteran Affairs: Multiple Sclerosis Centers of Excellence https://www.va.gov/ms
Paralyzed Veterans of America: Multiple Sclerosis Resources https://pva.org/research-resources/multiple-sclerosis
STUDY: Autologous Hematopoietic Stem Cell Transplantation is Superior to Alemtuzumab in Patients with Highly Active Relapsing Multiple Sclerosis and Severe Disability https://sciencedirect.com/science/article/pii/S2211034823005977
STUDY: African American Patients with Multiple Sclerosis (MS) Have Higher Proportions of CD19+ and CD20+ B-Cell Lineage Cells in Their Cerebrospinal Fluid than White MS Patients https://sciencedirect.com/science/article/abs/pii/S2211034823005485
REGISTER for Thursday's Global Webcast on Cognitive Challenges in Progressive MS https://msif.org/cognitive-webcast
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 323 Guests: Izzy Abbass and Jamie-Lynn Sigler
Privacy PolicyMon, 06 Nov 2023 - 31min - 404 - Episode 322: Women's Research in MS with Rachel Horne and Dr. Rhonda Voskuhl
Rachel Horne is a journalist who was diagnosed with MS in 2009. Since then, Rachel has developed a first-hand understanding of the knowledge gaps that remain when it comes to understanding the impact of MS on women's health and the impact of women's health issues on MS.
As Rachel reviewed MS research, she also observed that when it came to acknowledging outstanding MS research, it was rare that a female researcher was singled out to receive recognition for their work. This year, Rachel took action and did something about this unbalanced situation, establishing the Rachel Horne Prize for Women's Research in MS.
Dr. Rhonda Voskuhl has dedicated much of her career to improving our understanding of why MS affects men and women differently. Dr. Voskuhl was honored at the recent 2023 joint ECTRIMS-ACTRIMS meeting as the first recipient of the Rachel Horne Prize for Women's Research in MS.
I met up with Rachel Horne and Dr. Rhonda Voskuhl at the 2023 joint ECTRIMS-ACTRIMS meeting, and you won't want to miss our conversation.
We're also sharing an update on an investigational disease-modifying therapy for people with nonactive secondary progressive MS that's administered at home through a nasal spray.
We'll tell you how artificial intelligence is changing the way that MRI scans are analyzed. And we'll explain why that's a good thing for people living with MS.
And we're sharing the results of a study that demonstrates how obesity impacts symptom severity and quality of life for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Women's Research in MS :22
An investigational DMT for people with nonactive secondary progressive MS that's administered at home through a nasal spray 2:35
How artificial intelligence is changing MRI analysis for people living with MS 4:50
How obesity impacts symptom severity and quality of life in people living with MS 6:48
Rachel Horne and Dr. Rhonda Voskuhl discuss research into how MS impacts women's health issues and how women's health issues impact their MS 9:44
Share this episode 32:06
Have you downloaded the free RealTalk MS app? 32:26
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Just copy this link & paste it into your text or email: https://realtalkms.com/322
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS ECTRIMS EXTRA with Dr. Jiwon Oh https://realtalkms.com/ectrims2301
RealTalk MS ECTRIMS EXTRA with Dr. Anthony Feinstein https://realtalkms.com/ectrims2302
RealTalk MS ECTRIMS EXTRA with Dr. Annette Langer-Gould https://realtalkms.com/ectrims2303
RealTalk MS ECTRIMS EXTRA with Dr. Daniel Ontaneda https://realtalkms.com/ectrims2304
RealTalk MS ECTRIMS EXTRA with Dr. Robert Motl https://realtalkms.com/2305
ECTRIMS PRESENTATION: Obesity Negatively Affects Disease Progression, Cognitive Functioning, and Quality of Life in People with Multiple Sclerosis https://s3.eu-central-1.amazonaws.com/m-anage.com.storage.congrex/abstracts_ectrims2023/146956.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 322 Guests: Rachel Horne and Dr. Rhonda Voskuhl
Privacy PolicyMon, 30 Oct 2023 - 33min - 403 - ECTRIMS EXTRA: Dr. Robert Motl
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Robert Motl.
Dr. Motl is a professor in the department of Kinesiology and Nutrition, and a professor in the department of Rehabilitation Sciences at the University of Illinois Chicago. Dr. Motl is responsible for generating much of the foundational research validating the benefits of common physical activity in people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2305
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Robert Motl Guest: Dr. Robert Motl
Privacy PolicySat, 28 Oct 2023 - 10min - 402 - ECTRIMS EXTRA with Dr. Daniel Ontaneda
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Daniel Ontaneda.
Dr. Ontaneda is a neurologist at the Cleveland Clinic Neurological Institute's Mellen Center for Multiple Sclerosis and, while attending the ECTRIMS-ACTRIMS meeting, Dr. Ontaneda co-chaired a scientific session on artificial intelligence in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2304
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Daniel Ontaneda Guest: Dr. Daniel Ontaneda
Privacy PolicyFri, 27 Oct 2023 - 09min - 401 - ECTRIMS EXTRA: Dr. Annette Langer-Gould
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Annette Langer-Gould.
Dr. Langer-Gould is an MS Specialist at Kaiser-Permanente, and while at the ECTRIMS-ACTRIMS meeting, she co-chaired a session on MS and comorbidities.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2303
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Annette Langer-Gould Guest: Dr. Annette Langer-Gould
Privacy PolicyThu, 26 Oct 2023 - 06min - 400 - ECTRIMS EXTRA with Dr. Anthony Feinstein
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Anthony Feinstein.
Dr. Feinstein is a Professor of Psychiatry at the University of Toronto, and his expertise is in the neuropsychiatry of multiple sclerosis. Dr. Feinstein has studied behavioral disorders in people living with MS for 26 years. He also maintains a busy clinical practice in which over 80% of the patients are people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
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Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2302
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Anthony Feinstein Guest: Dr. Anthony Feinstein
Privacy PolicyWed, 25 Oct 2023 - 08min - 399 - Episode 321: More from the 2023 Joint ECTRIMS-ACTRIMS Meeting with Dr. Helen Tremlett
This week, we're sharing more from the 2023 joint ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) annual meeting.
What if we could identify MS before anyone experienced any of the typical clinical symptoms? Would treating that person with a high-efficacy disease-modifying therapy prevent the clinical symptoms of MS from even developing? Those are the questions that make the study of the MS prodrome so fascinating and important. At the joint ECTRIMS-ACTRIMS meeting, I met up with one of the foremost experts on the prodromal phase of MS, Dr. Helen Tremlett, who shared an update on what she's continuing to learn about the MS prodrome.
We'll also tell you about Dr. Jeffrey Huang's work in developing an experimental drug that may stop MS progression and stimulate remyelination.
We're sharing a report from Deloitte that analyzes the economic impact of the pandemic gap for people living with MS in Canada.
We'll tell you about the results of a study that show lower-efficacy disease-modifying therapies can lead to faster disability accumulation.
You'll hear about the work being done to deliver Ocrevus in a subcutaneous injection.
And we'll tell you what happened that caused a study focused on stopping your DMT if your MS was stable to be called off.
I had the good fortune of speaking with several research presenters at the joint ECTRIMS-ACTRIMS meeting, and I'll be releasing those bonus ECTRIMS Extra Conversations all week long. It's an opportunity for you to listen in to my conversations with some of the top MS research and clinical experts in the world. Be sure to look for these conversations throughout this week!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: More from the largest MS research conference in the world :22
Don't miss ECTRIMS Extra Conversations all week long!
Georgetown University researchers develop a drug that may stop MS progression and stimulate remyelination 1:20
The cost of the pandemic gap for people living with MS in Canada 3:10
Study shows that lower-efficacy DMTs can lead to faster disability accumulation 7:12
Clinical trial demonstrates that subcutaneous formulation of Ocrevus is safe and effective 10:47
Your MS stable, no relapses for at least 5 years. Can you stop your DMT? 12:33
Dr. Helen Tremlett explains how understanding the MS prodrome can change the future of MS treatment 15:49
Share this episode 21:26
Have you downloaded the free RealTalk MS app? 21:47
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Just copy this link & paste it into your text or email: https://realtalkms.com/321
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REPORT: The Socioeconomic Cost of, and Impact of, COVID-19 on Multiple Sclerosis in Canada https://mscanada.ca/sites/default/files/documents/2023-10/deloitte-covid-19-impact-english.pdf
ECTRIMS PRESENTATION: Subcutaneous Ocrelizumab in Patients with Multiple Sclerosis: Results of the Phase 1b Dose-Finding OCARINA 1 Study https://s3.eu-central-1.amazonaws.com/m-anage.com.storage.congrex/abstracts_ectrims2023/148349.pdf
ECTRIMS PRESENTATION: Discontinuation of First-Line Disease-Modifying Therapy in Stable MS (DOT-MS): An Early-Terminated Multicenter Randomized Controlled Trial https://s3.eu-central-1.amazonaws.com/m-anage.com.storage.congrex/abstracts_ectrims2023/146784.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 321 Guest: Dr. Helen Tremlett
Privacy PolicyMon, 23 Oct 2023 - 22min - 398 - ECTRIMS EXTRA with Dr. Jiwon Oh
With about 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh.
Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Toronto, Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2301
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS EXTRA with Dr. Jiwon Oh Guest: Dr. Jiwon Oh
Privacy PolicyThu, 19 Oct 2023 - 10min - 397 - Episode 320: From ECTRIMS-ACTRIMS 2023 with Bonnie Higgins and Dr. Tim Coetzee
Last week, more than 9,000 MS research scientists and clinicians from more than 110 countries traveled to Milan to attend the largest MS research conference in the world, the 2023 joint ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) annual meeting.
In keeping with a RealTalk MS tradition, just as the meeting was ending and the thousands of attendees were heading for the exits, I connected with the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, to discuss some of the research that captured his attention during the 3-day meeting.
Earlier in the final day of the joint ECTRIMS-ACTRIMS meeting, I connected with Bonnie Higgins, who was in Milan to participate in the ECTRIMS MS Patient Community Day. Bonnie was diagnosed with MS in 1994, and she shared her perspective on this remarkable conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the largest MS research conference in the world :22
Bonnie Higgins shares her perspective on ECTRIMS-ACTRIMS 2023 :50
Dr. Tim Coetzee talks about the ECTRIMS presentations that caught his eye 9:11
Share this episode 16:23
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Just copy this link & paste it into your text or email: https://realtalkms.com/320
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 320 Guest: Bonnie Higgins and Dr. Tim Coetzee
Privacy PolicyMon, 16 Oct 2023 - 17min - 396 - Episode 319: Global Survey Results Support a New Framework for Describing MS with Dr. Tim Coetzee
We've been using the same MS clinical course descriptors (relapsing-remitting, secondary progressive, and primary progressive) for almost three decades. As research has provided so much additional information and insight, is it time to update the way we describe, diagnose, and treat MS?
The International Advisory Committee on Clinical Trials in Multiple Sclerosis has established a working group to explore this question. And, as a means of eliciting feedback from stakeholders around the world, a global survey was launched.
The National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, joins me to share the results of this survey, which may represent a first step toward delivering next-generation MS care.
We're just two days away from the Hispanic/Latinx MS Experience Summit! We'll tell you why you don't want to miss this free online event, and we'll even tell you how to register.
We're sharing the results of a study that provides strong evidence for adopting hematopoietic stem cell transplantation (aHSCT) as a standard treatment option for people living with relapsing-remitting MS.
And we're sharing evidence from a Phase 3 clinical trial that demonstrates how cognitive behavioral therapy delivered over the internet significantly reduces depressive symptoms and improves the quality of life for people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: When it comes to adopting a new framework for describing MS, the survey says... :22
The Hispanic-Latinx MS Experience Summit is just two days away! 2:02
Swedish study shows that autologous hematopoietic stem cell transplantation (aHSCT) is an effective treatment for adults with relapsing-remitting MS 3:41
Phase 3 clinical trial shows that cognitive behavioral therapy delivered over the internet significantly reduces depressive symptoms among people liviing with MS 6:07
Dr. Tim Coetzee shares the results of a global survey that asked whether it's time to update the way we describe, diagnose, and treat MS 9:36
Share this episode 27:21
Have you downloaded the free RealTalk MS app? 27:42
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/319
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Do the Current MS Clinical Course Descriptors Need to Change and If So, How?: A Survey of the MS Community https://journals.sagepub.com/doi/10.1177/13524585231196786
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Register for the Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/Resources-Support/Library-Education-Programs/Hispanic-Latinx-MS-Experience-Summit
STUDY: Heaematopoietic Stem Cell Transplantation for Treating Multiple Sclerosis in Sweden: An Observational Cohort Study https://jnnp.bmj.com/content/early/2023/08/14/jnnp-2023-331864
National MS Society Recommendations for aHSCT-Bone Marrow Transplant for MS https://www.nationalmssociety.org/About-the-Society/News/National-MS-Society-Releases-Recommendations-for-a
STUDY: Internet-Derived Cognitive Behavioural Therapy Programme to Reduce Depressive Symptoms in Patients with Multiple Sclerosis: A Multicentre, Randomised, Controlled Phase 3 Trial https://sciencedirect.com/science/article/pii/S2589750023001097
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 319 Guest: Dr. Tim Coetzee
Privacy PolicyMon, 09 Oct 2023 - 28min - 395 - Episode 318: Understanding Shared-Decision Making with Dr. Lilyana Amezcua
In this episode of RealTalk MS, we're talking about what you should be talking about with your neurologist or MS Specialist. Shared decision-making is a key component of patient-centered health care. It's a process in which clinicians and patients work together to make evidence-based decisions on tests, treatments, and care plans that balance risks and expected outcomes with patient preferences and values.
But is shared decision-making actually occurring? Or are people living with MS still being handed a bunch of pamphlets published by different pharmaceutical companies and being asked to read them and let their doc know which disease-modifying therapy they'd like to start? How do we bridge the gap between the promise of shared decision-making and what, for too many people living with MS, is still an unfortunate reality?
Dr. Lilyana Amezcua joins me to share her thoughts on how to start the kinds of conversations you should be having with your neurologist or MS specialist.
Dr. Amezcua is an Associate Professor of Neurology, a diversity, equity, and inclusion champion, and the fellowship program director at the University of Southern California Keck School of Medicine.
The National MS Society is hosting the second annual Hispanic/Latinx MS Experience Summit next week. We're sharing all the details, and we'll tell you how you can register for this free virtual event.
We'll fill you in on the European Medicine Agency's approval of the first biosimilar for treating MS.
And we're sharing the results of an important study that focused on how COVID mRNA vaccines affect people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Getting shared decision-making right :22
The Hispanic/Latinx MS Experience Summit is happening Oct. 12th! 2:10
EMA approves the first biosimilar to treat MS 3:54
Study focuses on the affect of COVID mRNA vaccines on people living with MS 4:39
Dr. Lilyana Amezcua discusses how to make shared decision-making work for you and your neurologist 8:57
Share this episode 34:35
Have you downloaded the free RealTalk MS app? 34:55
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/318
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/Resources-Support/Library-Education-Programs/Hispanic-Latinx-MS-Experience-Summit
RealTalk MS Episode 315: Understanding Generic and Biosimilar Drugs for MS with Dr. Jiwon Oh https://realtalkms.com/315
STUDY: mRNA Covid-19 Vaccination Does Not Exacerbate Symptoms or Trigger Neural Antibody Response in Multiple Sclerosis https://nn.neurology.org/content/10/6/e200163
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 318 Guest: Dr. Lilyana Amezcua
Privacy PolicyMon, 02 Oct 2023 - 36min - 394 - Episode 317: It's Our 6th Anniversary! These Are the Most Impactful Conversations We've Had Over the Past Six Years
RealTalk MS is now 6 years old! We've covered a lot of ground in more than 300 episodes over the past 6 years. And I'm marking our 6-year anniversary by highlighting the most impactful conversations we've had in each of the past 6 years.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/317
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 2: The Congressional Threat to Your Healthcare https://realtalkms.com/2
RealTalk MS Episode 21: MS Advocacy: What It Is and Why It's So Important https://realtalkms.com/21
RealTalk MS Episode 81: The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, and Dr. Ruth Ann Marrie https://realtalkms.com/81
RealTalk MS Episode 125: The Pathways to Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 208: COVID-19 Vaccine Update: The Third Dose and MS with Dr. Nancy Sicotte and Victoria Holmes https://realtalkms.com/208
RealTalk MS Episode 229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi https://realtalkms.com/229
RealTalk MS Episode 231: Evidence Shows EBV Triggers MS -- Understanding the Impact of this Breakthrough Research with Dr. Bruce Bebo https://realtalkms.com/231
RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 317
Privacy PolicyMon, 25 Sep 2023 - 19min - 393 - Episode 316: Sex and MS with Madelyn Esposito
It's not unusual to see sex and intimacy become unintended and unnecessary collateral damage in the day-to-day-challenges of living with MS. But it doesn't have to be that way.
Madelyn Esposito, LPC, NCC, CST, joins me to discuss some of the common sexual problems faced by people living with MS, ways to maintain intimacy in your relationships, and tips for maintaining a healthy sex life.
Kristine Werner-Ozug and Cheryl Weeks-Frey take you inside the workings of the MS Society's Community Review of MS Research Committee.
We're also sharing important survey results that support updating the way that we describe MS, research MS, and treat MS.
We'll give you the details of a novel inverse vaccine that's been shown to stop the autoimmune response associated with MS.
And we're congratulating Dr Rhonda Voskuhl for being named the first recipient of the Rachel Horne Prize for Women's Research in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Let's talk about sex and MS :22
Next Week: It's our 6th anniversary! 1:38
Kristine Werner-Ozug and Cheryl Weeks-Frey share their experiences as members of the National MS Society's Community Review of MS Research Committee 2:22
Survey results support updating the MS clinical course descriptors 9:43
An inverse vaccine stops the animal model of MS 13:43
Dr. Rhonda Voskuhl is the first winner of the Rachel Horne Prize for Women's Research in MS 16:40
Sex therapist Madelyn Esposito shares tips for maintaining intimacy and enjoying a healthy sex life when you're living with MS 18:31
Share this episode 29:28
Have you downloaded the free RealTalk MS app? 29:48
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/316
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Do the Current MS Clinical Course Descriptors Need to Change and If So, How? A Survey of the MS Community https://journals.sagepub.com/doi/10.1177/13524585231196786
STUDY: Synthetically Glycosolated Antigens for the Antigen-Specific Suppression of Established Immune Responses https://nature.com/articles/s41551-023-01086-2
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 316 Guests: Kristine Werner-Ozug, Cheryl Weeks-Frey, and Madelyn Esposito
Privacy PolicyMon, 18 Sep 2023 - 31min - 392 - Episode 315: Understanding Generic and Biosimilar Drugs for MS with Dr. Jiwon Oh
Just a couple of weeks ago, the FDA approved the first biosimilar medication for treating MS. As generics and now, biosimilars, become more available, it seems like the right time for us to get clear on the similarities and differences between generics, biosimilars, and the name-brand drugs that they mimic.
Dr. Jiwon Oh joins me to explain everything you need to know to be an informed medical consumer when it comes to generic and biosimilar disease-modifying therapies. Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Ontario.
We'll also tell you about a simple blood test that can measure MS disease activity.
Izzy Abbas, the Co-Chairperson of the Paralyzed Veterans of America MS Committee will explain how the PVA supports veterans who are living with MS.
We're sharing the details of a large study that determined routine vaccinations don't cause MS relapses.
And if you're in New York and you're ready to laugh for a good cause, we have the details about the StandUp2MS comedy club benefit at Gotham Comedy Club. It's less than a week away!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Generic and biosimilar drugs for MS :22
A simple blood test that can assess MS disease activity 1:51
Izzy Abbas explains how the Paralyzed Veterans of America supports veterans living with MS 7:19
The StandUp2MS comedy club benefit is less than a week away! 17:28
Study results show that routine vaccinations don't cause MS relapses 18:37
Dr. Jiwon Oh explains the differences and similarities between generics, biosimilars, and the name-brand drugs that they mimic 21:19
Share this episode 37:40
Have you downloaded the free RealTalk MS app? 38:00
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/315
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Clinical Validation of a Multi-Protein, Serum-Based Assay for Disease Activity Assessments in Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1521661623004515
Paralyzed Veterans of America https://pva.org
Standup2MS Comedy Club Benefit https://standup2ms.org/comedy-club-benefit
STUDY: Vaccines and the Risk of Hospitalization for Multiple Sclerosis Flare-Ups https://jamanetwork.com/journals/jamaneurology/article-abstract/2809144
National MS Society: Detailed information on vaccinations for people living with MS https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Vaccinations#section-1
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 315 Guest: Izzy Abbas, Dr. Jiwon Oh
Privacy PolicyMon, 11 Sep 2023 - 39min - 391 - Episode 314: Pelvic Floor Health and MS with Jill Ehrmantraut
When you're living with MS, managing your pelvic floor health may not be among the first things you think about. But pelvic floor dysfunction, and the problems that arise from it, like bladder and bowel issues, can seriously impact your health, well-being, and quality of life.
Jill Ehrmantraut, a physical therapist and women's health clinical specialist with advanced training in pelvic rehabilitation, joins me to explain what pelvic floor rehab is all about, why it's important, and how you can get started on the path to improving your pelvic floor health.
We'll also tell you about the first 10 drugs that will be subject to price negotiations between Medicare and the companies that manufacture these drugs. (And we'll tell you how that's going to benefit tens of thousands of people living with MS)
We'll share the details of how you can weigh in on setting future research priorities for studying women's health in MS.
We'll let you know how you can participate in the Patient Community Day at ECTRIMS, the largest MS research conference in the world.
If you're in New York and you're ready to laugh for a good cause, we have the details about the upcoming StandUp2MS comedy club benefit at Gotham Comedy Club.
And we're sharing U.S. News & World Report's ranking of the best hospitals in the U.S. for neurology and neurosurgery.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Pelvic floor rehab can be a difference-maker in living your best life with MS :22
CMS announces the first 10 prescription drugs for which Medicare will negotiate prices 1:19
You can help set future research priorities for studying women's health in MS 3:00
The largest MS research conference in the world is hosting a Patient Community Day 4:17
The StandUp2MS comedy club benefit is less than two weeks away! 5:45
U.S. News & World Report has issued its ranking of the top hospitals in the U.S. for neurology and neurosurgery 6:58
Jill Ehrmantraut explains what pelvic floor health and why it's especially important when you're living with MS 9:52
Share this episode 22:37
Have you downloaded the free RealTalk MS app? 22:57
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Just copy this link & paste it into your text or email: https://realtalkms.com/314
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
SURVEY: Research Priorities in Women's Health in Multiple Sclerosis https://ais.swmed.edu/redcap/surveys/?s=8XJPD3PLCJ483KRL
MSMilan Patient Community Day Information and Registration https://ectrims.edu/msmilan2023-msmilan-patient-community-day/
Standup2MS Comedy Club Benefit https://standup2ms.org/comedy-club-benefit
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 314 Guest: Jill Ehrmantraut
Privacy PolicyMon, 04 Sep 2023 - 24min - 390 - Episode 313: Disaster Preparedness for People Affected by MS with Mary Casey-Lockyer
Fire, flood, record-setting heat, tropical storm, earthquake -- we've seen it all in the past several weeks! Natural disasters can present a whole series of unique challenges for people affected by MS.
Last year, I had an opportunity to talk about disaster preparedness for people affected by MS with Mary Casey-Lockyer, the Senior Medical Advisor to Disaster Operations at the American Red Cross. As extreme weather events become a more frequent and regular occurrence in our everyday weather patterns, I thought it made sense to revisit my conversation with Mary. Mary has just recently retired from her position at the Red Cross, but I think you'll find her tips and strategies as worthwhile and valuable today as they were a year ago.
We'll also tell you about Tyruko, the first biosimilar to receive FDA approval for treating MS (and we'll make sure you know exactly what biosimilars are and where they fit in the spectrum of pharmaceutical treatments).
We'll share the results of an important clinical trial that may cause experts to re-think when MS begins and when it should be treated.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Revisiting disaster preparedness for people affected by MS :22
The FDA has approved the first biosimilar for treating MS 1:38
Results from a clinical trial show that treating RIS with Aubagio significantly reduces the likelihood of developing MS 4:34
Mary Casey-Lockyer discusses how someone living with MS should prepare for a natural disaster 7:39
Share this episode 28:13
Have you downloaded the free RealTalk MS app? 28:33
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Just copy this link & paste it into your text or email: https://realtalkms.com/313
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Teriflunomide and Time to Clinical Multiple Sclerosis in Patients with Radiologically Isolated Syndrome https://jamanetwork.com/journals/jamaneurology/articles-abstract/2808741
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 313 Guest: Mary Casey-Lockyer
Privacy PolicyMon, 28 Aug 2023 - 29min - 389 - Episode 312: Adapting Exercise for MS with Dr. Gretchen Hawley
Contrary to what was once believed to be true, we now know that exercise and physical activity can deliver several important benefits for people living with MS, and actually improve your quality of life. Experts recommend exercise and physical activity for everyone living with MS, at every level of ability.
Dr. Gretchen Hawley joins me this week to talk about what kinds of exercises you can and should be doing -- at your level of ability.
We'll also tell you about an experimental Epstein-Barr Virus vaccine that was shown to induce a durable immune response in mice. (And we'll remind you why experts believe that an EBV vaccine could eliminate most of the MS in the world!)
And we'll give you the details of the National MS Society's latest $19.4 million investment in research focused on stopping MS in its tracks, restoring lost function, and ending MS forever.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Dr. Gretchen Hawley adapts MS-specific exercise for every level of ability :22
An experimental EBV vaccine induces a durable immune response in mice 1:59
The National MS Society invests $19.4 million in research to drive Pathways to Cures 4:38
Dr. Gretchen Hawley discusses adapting MS-specific exercises for every level of ability 7:38
Share this episode 28:38
Have you downloaded the free RealTalk MS app? 28:59
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Just copy this link & paste it into your text or email: https://realtalkms.com/312
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The MSing Link Online Wellness Program for Multiple Sclerosis https://www.doctorgretchenhawley.com/TheMSingLink
The MSing Link: The Essential Guide to Improve Walking, Strength, & Balance for People with Multiple Sclerosis https://www.amazon.com/Msing-Link-Essential-Strength-Sclerosis/dp/B0C9SQHJDM
STUDY: Lymph Node Targeted Multi-Epitope Subunit Vaccine Promotes Effective Immunity to EBV in HLA-Expressing Mice https://nature.com/articles/s41467-023-39770-1
National MS Society Commits $19.4 Million for Research to Drive Pathways to Cures https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/research/newresearchjune2023.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 312 Guest: Dr. Gretchen Hawley
Privacy PolicyMon, 21 Aug 2023 - 30min - 388 - Episode 311: Prehabilitation with Dr. Kathy Zackowski
Rehabilitation can help people regain, keep, or improve the physical or cognitive abilities they need to successfully navigate their daily lives, which makes it an important aspect of managing MS. In this episode of RealTalk MS, we're focusing on a concept that may not be as familiar to you -- prehabilitation, a proactive approach to maintaining your mobility and independence longer.
Returning to RealTalk MS to discuss the value and benefits of prehabilitation is the National MS Society's Associate Vice-President for Research, Dr. Kathy Zackowski.
This week, you'll also meet Matt Knaggs. Matt was diagnosed with MS in 2020, and in a short amount of time, Matt has literally covered a lot of ground, including running a 12-hour ultra-marathon and launching a Facebook group with a unique perspective.
And we'll remind you that this Thursday, August 17th, is Burgers to Beat MS day at A&W locations throughout Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Prehabilitation can make a difference in your future well-being :22
This Thursday is Burgers to Beat MS day in Canada! 1:20
Matt Knaggs talks about running the distance because of MS 2:32
Dr. Kathy Zackowski explains how prehabilitation can be a difference-maker in your future well-being 19:36
Share this episode 38:54
Have you downloaded the free RealTalk MS app? 39:15
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Just copy this link & paste it into your text or email: https://realtalkms.com/311
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Burgers to Beat MS https://BurgersToBeatMS.ca
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 311 Guests: Matt Knaggs and Dr. Kathy Zackowski
Privacy PolicyMon, 14 Aug 2023 - 40min - 387 - Episode 310: The Face Laughs While the Brain Cries with Dr. Stephen Hauser
Dr. Stephen Hauser's research as a physician-scientist has revolutionized our understanding of the genetics, immunology, and treatment of MS. It was Dr. Hauser's research that led to the development of a b-cell therapy for MS, which has been shown to be highly effective in treating all forms of MS and the only treatment approved for treating progressive MS.
Dr. Hauser joins me this week, to discuss some of the pivotal moments in his remarkable career.
Dr. Hauser's memoir, The Face Laughs While the Brain Cries: The Education of a Doctor, goes well beyond the expected autobiography and offers us an opportunity to silently observe the process of scientific discovery. If you're curious about how we know what we know about multiple sclerosis, but you aren't ready to make your way through the dry prose of a scientific journal, this is the book for you.
The World Health Organization has added three disease-modifying therapies for MS to its Essential Medicines List. We'll share the details and tell you why this groundbreaking decision is so important.
We're sharing the results from a clinical trial that provide evidence that starting a disease-modifying therapy early slows MS progression.
And we'll remind you that August 17th is Burgers to Beat MS day at A&W locations throughout Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Dr. Stephen Hauser reflects on his remarkable career :22
The World Health Organization has added three disease-modifying therapies for MS to its Essential Medicines List 1:57
Study results show that starting a disease-modifying therapy early slows MS progression 4:12
August 17th is Burgers to Beat MS day in Canada! 7:01
Dr. Stephen Hauser discusses his remarkable career as a physician-scientist whose discoveries have had an enormous impact on people affected by MS 8:23
Share this episode 29:23
Have you downloaded the free RealTalk MS app? 29:44
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Just copy this link & paste it into your text or email: https://realtalkms.com/310
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The Face Laughs While the Brain Cries: The Education of a Doctor by Dr. Stephen Hauser https://amazon.com/Face-Laughs-While-Brain-Cries/dp/1250283892
MSIF: WHO's Decision Brings Hope to People with MS Worldwide https://msif.org/news/2023/07/25/whos-decision-brings-hope-to-people-with-ms-worldwide
STUDY: Association of Very Early Treatment Initiation with the Risk of Long-Term Disability in Patients With a First Demyelinating Event https://n.neurology.org/content/early/2023/07/19/WNL.0000000000207664
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 310 Guest: Dr. Stephen Hauser
Privacy PolicyMon, 07 Aug 2023 - 30min - 386 - Episode 309: Solving Speech and Swallowing Problems in MS with Dr. Marissa Barrera
The ability to speak is something so basic to our day-to-day lives that you may not ever stop to consider it until you realize something about your speech may be changing. And swallowing is something that's so automatic, we take it for granted. Until, that is, something changes, and you find yourself choking on a sip of water.
Speech and swallowing problems are fairly common MS symptoms. And joining me to discuss some of the most common speech and swallowing disorders people with MS might encounter, and how working with a speech pathologist can make a real difference in tackling those speech and swallowing issues is an internationally recognized medical Speech-Language Pathologist and Multiple Sclerosis Certified Specialist, Dr. Marissa Barrera.
We're also sharing news about an updated guidance that's been published by a group of MS experts to help healthcare professionals avoid misdiagnosing MS.
We'll tell you about results from a small study that demonstrate the potential risks associated with requiring prior authorization from insurance companies for disease-modifying therapies which have been prescribed to people newly diagnosed with MS.
The International Progressive MS Alliance has published a report on the Scientific Congress it convened in June. We'll tell you where you can download your copy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Improving speech and swallowing issues in MS :22
An international group of experts has published an updated guidance for neurologists and other healthcare professionals on how to distinguish MS from other neurological look-alikes 1:39
Results from a small study demonstrate that requiring prior authorization for disease-modifying therapies poses potential health risks for people newly diagnosed with MS 3:12
The International Progressive MS Alliance has published a report on the Scientific Congress it convened this past June 8:29
Dr. Marissa Barrera discusses some of the common speech and swallowing disorders people with MS might encounter 9:53
Share this episode 34:51
Have you downloaded the free RealTalk MS app? 35:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/309
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Differential Diagnosis of Multiple Sclerosis: An Updated Consensus Approach https://thelancet.com/journals/laneur/article/PIIS1474-4422(23)00148-5/fulltext
STUDY: The Impact of Insurance Restrictions in Individuals Newly DIagnosed with Multiple Sclerosis https://meridian.allenpress.com/ijmsc/article/doi/10.7224/1537-2073.2022-069/494514/The-Impact-of-Insurance-Restrictions-in
Report from the International Progressive MS Alliance 2023 Scientific Congress https://www.progressivemsalliance.org/wp-content/uploads/2023/07/230719-Alliance-Scientific-Congress-Report-July-2023.pdf
RealTalk MS Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1) https://realtalkms.com/303
RealTalk MS Episode 304: The International Progressive MS Alliance Scientific Congress (Part 2) https://realtalkms.com/304
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 309 Guest: Dr. Marissa Barrera
Privacy PolicyMon, 31 Jul 2023 - 36min - 385 - Episode 308: Improving Your Balance and Walking When You're Living With MS with Dr. Nora Fritz
Experiencing difficulty walking is one of the most common mobility challenges faced by people living with MS. The good news is that there are things you can do -- both with a physical therapist and by yourself, at home -- that can make a real difference.
Joining me to discuss improving your gait, avoiding falls, and what experts are learning from the latest research in this area is the Director of Research for the Department of Health Care Sciences at Wayne State University School of Medicine, Dr. Nora Fritz.
We're also sharing the results of a study that looked at whether disease-modifying therapies had an impact on the number of hospitalizations or visits to the doctor someone with MS might experience over a 22-year period.
We'll tell you about a study that measured the outcome for people with relapsing-remitting MS who were treated with autologous hematopoietic stem cell transplantation (aHSCT) compared with the outcome for people with relapsing-remitting MS who were treated with Gilenya, Tysabri, or Ocrevus.
We'll share the results from a study that analyzed 56 other studies to determine the prevalence of sexual dysfunction among women living with MS.
We'll tell you about a nationwide study that's about to get underway that will try to answer the question, 'Should people with MS over the age of 65 discontinue their disease-modifying therapy?'
And we'll remind you about how you can join us in Napa Valley this Saturday, July 29th, for Crush MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Improving your balance and gait :22
A research team analyzed the risk of hospitalization over a 22-year period for people with MS who were on a disease-modifying therapy and compared those results to people with MS who weren't on a DMT 1:21
Researchers compared patient outcomes associated with autologous hematopoietic stem cell transplantation (aHSCT) and compared them with outcomes associated with Gilenya, Tysabri, and Ocrevus 4:40
A research team in Iran analyzed results from 56 separate studies about sexual dysfunction in women with MS 8:29
Should someone over the age of 65 discontinue their disease-modifying therapy? 11:40
Dr. Nora Fritz discusses gait, balance, fall prevention and more 15:20
Share this episode 33:49
I'll be at Crush MS! Will I see you there? 34:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/308
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Disease-Modifying Drugs for Multiple Sclerosis and Subsequent Health Service Use https://pubmed.ncbi.nlm.nih.gov/34949130
Tremlett's MS Research Explained: Disease-Modifying Drugs for Multiple Sclerosis and Subsequent Health Service Use https://tremlettsmsresearchexplained.wordpress.com/category/ms-disease-modifying-drug-research
STUDY: Comparative Effectiveness of Autologous Hematopoietic Stem Cell Transplant vs Fingolimod, Natalizumab, and Ocrelizumab in Highly Active Relapsing-Remitting Multiple Sclerosis https://pubmed.ncbi.nlm.nih.gov/37437240
STUDY: Prevalence and Risk of Developing Sexual Dysfunction in Women with Multiple Sclerosis (MS): A Systematic Review and Meta-Analysis https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-023-02501-1
RealTalk MS Episode 255: Aging With MS with Dr. John Corboy https://realtalkms.com/255
Crush MS https://crushms.org If you're living with MS, email info@crushms.org for special deep discount code Crush MS 10% Discount Code for everyone is Realtalkmsdiscount (case sensitive)
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 308 Guest: Dr. Nora Fritz
Privacy PolicyMon, 24 Jul 2023 - 36min - 384 - Episode 307: Managing Stress and Anxiety When You're Living With MS with Dr. Bree Wannamaker
Learning to effectively manage stress and anxiety is important for everyone. And if you're living with the unpredictability of MS, it may be doubly important.
Joining me to discuss the impact that stress and anxiety can have on your physical and mental health, along with strategies you can use to manage the stress and anxiety in your life, is Dr. Bree Wannamaker. Dr. Wannamaker lives with MS, and she's a Licensed Professional Counselor and Chief Therapist & Consultant in her practice, Just Us Counseling and Consulting, LLC.
We're also sharing the results of a study that compared patient outcomes among people with relapsing-remitting MS who were started on a high-efficacy disease-modifying therapy and people with relapsing-remitting MS who were started on a lower efficacy DMT.
We'll tell you about remyelination research that led to a surprising conclusion.
We'll share the details about Crush MS, an amazing event in Napa Valley that brings together wine, food, and music to raise money for MS research. I hope I'll see you there!
And if you're on Ocrevus, we have some potentially time-saving news to share with you!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing stress and anxiety if you're living with MS :22
A research team analyzed the outcomes for people with MS who were started on a high-efficacy DMT and compared them to the outcomes for people with MS who were started on a lower-efficacy DMT 1:18
An experimental therapy promoted remyelination by upending the commonly held scientific hypothesis about myelin repair 6:53
I'll be at Crush MS! Will I see you there? 9:53
An Ocrevus treatment in just 10 minutes? 11:31
Dr. Bree Wannamaker shares strategies for managing stress and anxiety 13:33
Share this episode 33:20
Have you downloaded the free RealTalk MS app??? 33:41
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/307
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Does Initial High-Efficacy Therapy in Multiple Sclerosis Surpass Escalation Treatment Strategy? A Comparison of Patients with Relapsing-Remitting Multiple Sclerosis in the Czech and Swedish National Multiple Sclerosis Registries https://sciencedirect.com/science/article/abs/pii/S221103482300305X
TREAT-MS Clinical Trial https://treat-mstrial.org
Crush MS https://crushms.org If you're living with MS, email info@crushms.org for special deep discount code Crush MS 10% Discount Code for everyone is Realtalkmsdiscount (case sensitive)
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 307 Guest: Dr. Bree Wannamaker
Privacy PolicyMon, 17 Jul 2023 - 34min - 383 - Episode 306: Making Meal Planning and Prep Easier When You're Living with MS with Trevis Gleason
Living your best life with MS often means planning ahead and, when circumstances require, knowing when and how to adapt. Many of us find ourselves in the kitchen every day. And, while cooking can be pleasurable, it can also be a chore that only gets worse if you're dealing with pain, fatigue, mobility issues, tingling in your hands and arms, unsteady balance, or other MS symptoms.
Award-winning author, chef, and blogger, Trevis Gleason joins me to talk about how planning ahead and adopting new behaviors can ease the burden of meal preparation. Trevis was diagnosed with secondary progressive MS in 2001, and he's sharing tips and strategies designed to make your meal planning and prepping easier.
We're also sharing the details about Crush MS, a fantastic mix of wine, food, and music that raises funds for MS research.
We'll introduce you to Air4All, a company that's out to make air travel a much better experience for wheelchair users.
We'll share the outcome of a study that has identified a single genetic variant that may determine how fast an individual's MS will progress.
We'll tell you about another study that gives us one more important reason to quit smoking if you're living with MS.
And we'll share study results from Denmark that demonstrate the impact of a plant-based diet on people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How to make meal planning and prep easier if you're living with MS :22
I'll be at Crush MS! Will I see you there? 1:23
Air4All may change everything about air travel for wheelchair users 3:10
Researchers have identified a single genetic variant that may determine how fast MS progresses 5:55
Study results provide one more really good reason to stop smoking if you're living with MS 8:10
Study results illustrate the impact of a mostly plant-based diet on people living with MS 11:08
Award-winning author, chef, and blogger, Trevis Gleason, shares tips and strategies designed to make meal planning and prep easier if you're living with MS 13:54
Share this episode 29:29
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Crush MS https://crushms.org If you're living with MS, email info@crushms.org for special deep discount code Crush MS 10% Discount Code for everyone is Realtalkmsdiscount (case sensitive)
RealTalk MS Episode 302: De-Stressing Air Travel If You're Living With MS with Dr. Scott Crawford https://realtalkms.com/302
Air4All https://air4all.net
STUDY: Locus for Severity Implicates CNS Resilience in Progression of Multiple Sclerosis https://nature.com/articles/s41586-023-06250-x
STUDY: The Effects of Different Types of Smoking on Recovery From Attack on Hospitalized Multiple Sclerosis Patients https://sciencedirect.com/science/article/abs/pii/S0303846723002627
STUDY: Dietary Patterns and Their Association with Symptom Levels Among People with Multiple Sclerosis: A Real-World Digital Study https://link.springer.com/article/10.1007/s40120-023-00505-5
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 306 Guest: Trevis Gleason
Privacy PolicyMon, 10 Jul 2023 - 31min - 382 - Bonus Episode: Everything You Need to Know About Clinical Trials with Dr. Aaron Boster
This special episode of RealTalk MS is sponsored by Sanofi.
In this special episode of RealTalk MS, Dr. Aaron Boster walks us through everything you need to know about clinical trials.
If you've ever wondered what the difference is between a Phase 1 clinical trial, a Phase 2 clinical trial, or a Phase 3 clinical trial, you're about to find out. If you're curious about how a clinical trial participant's privacy is protected, how safety is ensured, and how you can learn about clinical trials that may be taking place near you, it's time to click that PLAY button!
Dr. Aaron Boster is a board-certified neurologist specializing in MS and the founder of the Boster Center for Multiple Sclerosis in Columbus, Ohio, Dr. Boster has been a principal investigator in numerous clinical trials and has published extensively in medical journals.
To learn more about Sanofi's clinical research studies, please visit https://www.sanofistudies.com/us/en
Fri, 28 Jul 2023 - 25min - 381 - Episode 305: 30 Years Later -- Looking Back (and Ahead) with Dr. Fred Lublin and Dr. Stephen Krieger
2023 marks 30 years since the very first MS disease-modifying therapy received FDA approval. To say that changed everything would be an understatement.
Two of the top MS experts in the world have published a reflection, looking back at how MS research and treatment has progressed over the past 30 years and looking ahead at the challenges that remain in solving the riddle of MS. Joining me this week are the authors of that reflection, Dr. Fred Lublin and Dr. Stephen Krieger.
Dr. Lublin participated in the development of the very first disease-modifying therapy approved for treating MS and, since that time, he has been involved in the development of nearly all of the DMTs available today.
Dr. Krieger has developed a game-changing theory that MS is a single disease that evolves along a continuum, rather than the four separate categories that neurologists have used to describe MS for the past couple of decades.
We'll also introduce you to The Community Review of MS Research Committee.
We'll share what very well may be the single most important development to come out of the Pathways To Cures Global Summit.
We'll tell you about the outcome of a study that may point to a potential MS treatment for women that has also been shown to trigger myelin repair.
We'll explain the method for accurately measuring remyelination that was just recently confirmed by a UCSF research team.
And we'll tell you where you can catch the video replay of the webcast that was live-streamed from last month's International Progressive MS Alliance Scientific Congress.
We have a lot to talk about! Are you ready for RealTalk MS??!
I'm back from the Community Review of MS Research Committee meeting :22
This Week: 30 Years Later....looking back (and ahead!) 4:08
The first-ever Global Research Strategy Framework has been announced 5:26
Don't miss the video replay of the webcast that was live streamed from last month's International Progressive MS Alliance Scientific Congress 2:55
A study shows that the hormone estriol reduces MS severity and promotes myelin repair 9:54
A UCSF research team has developed a method of accurately measuring remyelination 13:16
Dr. Fred Lublin and Dr. Stephen Krieger review the progress that's been made since the approval of the first MS disease-modifying therapy and they look ahead at the challenges that remain in solving the riddle of MS 17:23
Share this episode 30:08
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 297: The Pathways To Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 298: The Pathways To Cures Global Summit (Part 2) https://realtalkms.com/298
Video Replay: Ending MS Progression: Research Advances That Could Lead to Breakthrough Treatment https://www.youtube.com/watch?v=p9OQ_hvVpfA
STUDY: Neuroprotection in Cerebral Cortex Induced by the Pregnancy Hormone Estriol https://sciencedirect.com/science/article/pii/S0023683723001320?via%3Dihub
RealTalk MS Episode 189: Research on Sex Differences in MS Leads to Potential Treatment Options with Dr. Rhonda Voskuhl https://realtalkms.com/189
STUDY: MWF of the Corpus Callosum Is a Robust Measure of Remyelination: Results from the ReBUILD Trial https://pnas.org/doi/10.1073/pnas.2217635120
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 305 Guests: Dr. Fred Lublin and Dr. Stephen Krieger
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 03 Jul 2023 - 31min - 380 - Episode 304: The International Progressive MS Alliance Scientific Congress (Part 2)
Just a couple of weeks ago, the International Progressive MS Alliance convened its fourth Scientific Congress in Vienna, Austria, bringing together nearly 200 international scientists and MS leaders, including people affected by progressive MS, to report and review the progress being made in developing new, effective treatments for progressive MS.
In Part 2 of our coverage, we're taking you back inside this Scientific Congress, where you'll hear from some of the top MS researchers in the world who participated in this game-changing event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: More from the International Progressive MS Alliance Scientific Congress :22
Professor Xavier Montalban shares his perspective on the role of the Alliance and the presentations that we saw and heard on Day One of the Scientific Congress 1:32
Professor David Leppert explains how a biomarker for MS progression will impact MS research and MS treatment 8:04
Dr. Anne Cross discusses some of the presentations that we saw and heard on Day One of the Scientific Congress 16:20
Philanthropist Monia Joblin explains why the work of the International Progressive MS Alliance is important to her and to other families affected by progressive MS 26:13
Share this episode 39:19
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The International Progressive MS Alliance https://progressivemsalliance.org
RealTalk MS Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1) https://realtalkms.com/303
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 304 Guests: Prof. Xavier Montalban, Prof. David Leppert, Dr. Anne Cross, and Monia Joblin
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 26 Jun 2023 - 41min - 379 - Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1)
Last week, the International Progressive MS Alliance convened its fourth Scientific Congress in Vienna, Austria, bringing together nearly 200 international scientists and MS leaders, including people affected by progressive MS, to report and review the progress being made in developing new, effective treatments for progressive MS.
In Part 1 of our coverage, we're taking you inside this Scientific Congress, where you'll hear from some of the top MS researchers in the world who participated in this game-changing event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The International Progressive MS Alliance Scientific Congress :22
Dr. Robert Fox shares an overview of the Alliance and a preview of this Scientific Congress 3:17
Vanessa Fanning explains the role of the Alliance People Affected by MS Engagement Coordination Team 16:49
Professor Tanja Kuhlmann discusses the critical importance of identifying the mechanisms that drive MS progression 26:01
Remyelination is a natural process. Professor Robin Franklin explains why it stops working for people with MS 35:24
Professor Olga Ciccarelli tells us where we are in understanding remyelination and shares some of her cutting-edge research 41:48
Share this episode 53:01
Please remember to take our listener survey! 53:21
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The International Progressive MS Alliance https://progressivemsalliance.org
RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode 280 Guests: Dr. Robert Fox, Vanessa Fanning, Prof. Tanja Kuhlmann, Prof. Robin Franklin, and Prof. Olga Ciccarelli
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 19 Jun 2023 - 54min - 378 - Episode 302: De-Stressing Air Travel If You're Living With MS with Dr. Scott Crawford
When you’re living with MS, air travel can sometimes get complicated. We’re heading into the summer vacation season, so the timing couldn’t be better to talk with Dr. Scott Crawford.
Dr. Crawford is a neuropsychologist who lives with MS and has extensive experience as a passenger on commercial airlines. Dr. Crawford is also an MS Activist and he's joining me to walk us through how to de-stress airline travel and to explain your rights as an airline passenger if you're living with a disability.
You're also going to meet MS patient advocate Julie Stamm and Dr. Jenny Woo, the two difference-makers behind a project called 52 Essential Inclusion Skills: An A-to-Z Guide to Kindness, Compassion, and Respect for Diverse Abilities.
We'll give you your last reminder to sign up for the Black MS Experience Summit. It's happening virtually this Wednesday and Thursday, June 14th and 15th.
And we'll also tell you where you can sign up for the global webcast that I'll be hosting this Thursday, June 15th, from the International Progressive MS Alliance Scientific Congress in Vienna, Austria.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: De-Stressing Air Travel If You're Living with MS :22
June 14th and 15h -- It's the Black MS Experience Summit 1:19
June 14th -- Don't miss the webcast from the International Progressive MS Alliance Scientific Congress live from Vienna, Austria 2:17
Julie Stamm and Dr. Jenny Woo share 52 Essential Inclusion Skills: An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities 2:55
Dr. Scott Crawford discusses how to de-stress air travel if you're living with MS 19:29
Share this episode 38:00
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Just copy this link & paste it into your text or email: https://realtalkms.com/302
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
52 Essential Inclusion Skills: An A-to-Z Guide to Kindness, Compassion, and Respect for Diverse Abilities https://mindbrainemotion.com/products/52-essential-inclusion-skills
REGISTER for the Black MS Experience Summit https://nmss.6connex.com/event/BlackMSExperienceSummit/login
REGISTER for the International Progressive MS Alliance Scientific Congress LIVE Webcast https://msif.org/join-us-for-the-june-2023-webcast-on-ending-ms-progression
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 302 Guests: Julie Stamm, Dr. Jenny Woo, and Dr. Scott Crawford
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 12 Jun 2023 - 39min - 377 - Episode 301: From the Consortium of Multiple Sclerosis Centers Annual Meeting
Last week, the Consortium of Multiple Sclerosis Centers brought together over 2,000 neurologists, MS nurses, rehabilitation specialists, and other healthcare professionals in Aurora Colorado, for their annual conference.
This week, we're taking you inside the meeting and sharing our conversations with some of the difference-makers in the MS Movement.
Next week, we're traveling to Vienna, Austria to attend the International Progressive MS Alliance Scientific Congress, where we'll hear updates on some of the cutting-edge progressive MS research that the Alliance is funding. And during the conference, we're hosting a live webcast that you won't want to miss!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're at the Consortium of Multiple Sclerosis Centers Annual Conference :22
Dr. Kathy Zackowski gives us an overview of some of the presentations that caught her eye 1:03
Dr. Anthony Feinstein talks about emerging research focused on the impact of mental health issues on people with MS 22:10
President and CEO of the National MS Society, Cyndi Zagieboylo discusses some of the Society's game-changing initiatives 31:30
Next week: I'll be in Vienna, attending the International Progressive MS Alliance Scientific Congress. Don't miss our live webcast from Vienna! 47:03
Share this episode 48:08
Have you downloaded the RealTalk MS app??? 48:28
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Just copy this link & paste it into your text or email: https://realtalkms.com/301
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Live Webcast from the International Progressive MS Alliance Scientific Congress in Vienna, Austria https://msif.org/join-us-for-the-june-2023-webcast-on-ending-ms-progression
Download What to Expect from Mental Healthcare: A Guide for People with MS https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/brochures/ce_pubs_mentalhealthguidnce_0422_final.pdf
Download What to Expect from Rehabilitation Care: A Guide for People with MS https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/brochures/brochure-rehabilitation-care.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 301 Guests: Dr. Kathy Zackowski, Dr. Anthony Feinstein, and Cyndi Zagieboylo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 05 Jun 2023 - 49min - 376 - Episode 300: Healthcare Disparities Among Minority Populations with Dr. Lilyana Amezcua
Welcome to the 300th episode of RealTalk MS! Yikes!
In last week's episode of the podcast, Dr. Bruce Bebo walked us through the latest research on the prevalence of MS in the United States, and the data serves as a clear reminder that anyone can get MS.
However, not everyone with MS receives the same quality of care. My guest today is clinician-researcher Dr. Lilyana Amezcua, and we're discussing her work in exploring healthcare disparities among minority populations.
In addition to celebrating our 300th episode, we're also celebrating World MS Day! We'll let you know where you can join the virtual festivities.
And, as our RealTalk MS Listener Survey ends, we're announcing the winner of a $100 Amazon Gift Card.
Can Do MS is hosting a day-long in-person and virtual More About MS program this Friday, June 2. We'll give you the details and tell you how you can register for this free event.
And the International Progressive MS Alliance has announced a large-scale research program focused on developing solutions to some of the most challenging symptoms that people living with progressive MS face. We're sharing the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
Welcome to our 300th episode! :25
It's World MS Day! 1:55
Congratulations to the winner of a $100 Amazon gift card! 2:56
Details and registration info for the Can Do MS More About MS Program 3:43
The International Progressive MS Alliance announces a large-scale research program 5:17
Dr. Lilyana Amezcua discusses healthcare disparities among minority communities 7:51
Share this episode 32:12
Thanks for listening, and here's to the next 300!! 32:32
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
World MS Day on the Web https://worldmsday.org
World MS Day on Facebook https://facebook.com/worldmsday
REGISTER for the Can Do MS More About MS Program https://cando-ms.org/more-about-ms-registration
Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance https://journals.sagepub.com/doi/pdf/10.1177/1352458521999970
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 300 Guests: Dr. Lilyana Amezcua
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 29 May 2023 - 33min - 375 - Episode 299: Update on the Prevalence of MS in the United States with Dr. Bruce Bebo
Evidence shows that MS can affect members of minority communities differently. But how does that impact the total number of people who are living with MS? For multiple reasons, it's a tricky problem to solve. Yet, it's important that the numbers reflect everyone living with MS and no one is left behind.
This week, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, is on hand to walk us through the just-published results of a study that provides a more granular estimate of the prevalence of MS in the United States, analyzing it by race, ethnicity, age, sex, and geographic region.
We're also reminding you that this is the final week for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and, maybe, win a $100 Amazon gift card.
On June 14th and 15th, the National MS Society is hosting the virtual 2023 Black MS Experience Summit. And we're sharing all the registration info.
Can Do MS is hosting a day-long in-person and virtual More About MS program on June 2. We'll tell you how you can register for this free event.
We'll give you the details about the latest advocacy win for people living with MS.
And we'll tell you about the new MS Society in the UAE.
We're sharing the results of a study that analyzed the benefits of virtual reality therapy for improving balance among people living with MS.
And we'll tell you about the somewhat puzzling results of a study of the incidence of MS in the U.K.
We have a lot to talk about! Are you ready for RealTalk MS??!
Next Week: Episode 300 (Yikes!) :22
FINAL WEEK: Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! 1:36
This Week: A deep dive into the prevalence of MS in the United States 2:31
Registration info for the 2023 Black MS Experience Summit 3:12
Registration info for the Can Do MS More About MS Program 4:12
An advocacy win! 6:13
An MS Society in the UAE 10:40
STUDY: Virtual reality therapy is shown to improve balance for people living with MS 12:34
STUDY: The incidence of MS in the U.K. has not changed for almost two decades 16:25
Dr. Bruce Bebo walks us through anewly-published study that takes a granular look at the prevalence of MS in the United States 21:09
Share this episode 34:05
Please remember to take our listener survey! 34:26
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/299
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
STUDY: Population-Based Estimates for the Prevalence of Multiple Sclerosis in the United States by Race, Ethnicity, Age, Sex, and Geographic Region https://jamanetwork.com/journals/jamaneurology/fullarticle/2805038
REGISTER for the National MS Society's 2023 Black MS Experience Summit https://nmss.6connex.com/event/BlackMSExperienceSummit/login
REGISTER for the Can Do MS More About MS Program https://cando-ms.org/more-about-ms-registration
Advocate For Change -- Become an MS Activist https://nationalmssociety.org/advocacy
The National MS Society in the UAE https://www.nationalmssociety.ae
STUDY: Virtual Reality-Based Therapy Improves Balance and Reduces Fear of Falling in Patients with Multiple Sclerosis: A Systematic Review and Meta-Analysis of Randomized Controlled Studies https://jneuroehgrehab.biomedical.com/articles/10.1186/s12984-023-01174-z
STUDY: Incidence, Prevalence, and Co-Occurrence of Autoimmune Disorders Over Time and by Age, Sex, and Socioeconomic Status: A Population-Based Cohort Study of 22 Million Individuals in the U.K. https://thelancet.com/journals/lancet/article/PIIS0140-6736(23)00457-9/fulltext
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 299 Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 22 May 2023 - 35min - 374 - Episode 298: From the Pathways To Cures Global Summit (Part 2)
Don't miss the second installment of our Pathways To Cures Global Summit coverage. For this unprecedented event, the National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.
In Part 2 of our coverage, we're taking you back inside this historic meeting, where you'll hear from more of the top MS experts in the world who participated in this remarkable event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We wrap up our coverage of the Pathways To Cures Global Summit :22
We've learned more about the prevalence of MS in the United States 1:22
Dr. Anne Helme discusses the wide variance in MS treatment 5:13
Dr. Paula Zaratin talks about the importance of research governance 11:01
Dr. Peter Calabresi discusses the uncertainty of living with MS 18:19
Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways To Cures global research initiative 24:57
Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways To Cures initiative doesn't leave anyone behind 30:15
Summing up the Pathways To Cures Global Summit 35:16
Share this episode 36:05
Please remember to take our listener survey! 36:25
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Just copy this link & paste it into your text or email: https://realtalkms.com/298
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Episode 297: From the Pathways To Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 125: From the Pathways To Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 238: The Pathways To Cures Research Roadmap https://realtalkms.com/238
Pathways To Cures https://nationalmssociety.org/pathways-to-cures
RealTalk MS Episode 81: The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, and Dr. Ruth Ann Marrie https://realtalkms.com/81
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 298 Guests: Dr. Anne Helme, Dr. Paula Zaratin, Dr. Peter Calabresi, Dr. Daniel Ontaneda, and Dr. Mitzi Joi Williams
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 15 May 2023 - 37min - 373 - Episode 297: From the Pathways to Cures Global Summit (Part1)
This past week, the National MS Society hosted the Pathways To Cures Global Summit, bringing together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.
In Part 1 of our coverage, we're taking you inside this historic meeting, where you'll hear from some of the top MS experts in the world who participated in this remarkable event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Pathways To Cures Global Summit :22
My conversation with a distinguished group of CEOs representing 5 major MS Societies 3:04
Tim Coetzee discusses the current state of MS care and the work ahead 9:20
Kathy Smith offers her perspective on the Pathways To Cures Global Summit 14:32
Dr. Anne-Katrin Probstel talks about stopping MS 22:52
Dr. Naila Makhani discusses detecting MS early 33:54
Share this episode 39:17
Please remember to take our listener survey! 39:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/297
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Episode 125: From the Pathways To Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 238: The Pathways To Cures Research Roadmap https://realtalkms.com/238
Pathways To Cures https://nationalmssociety.org/pathways-to-cures
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 297 Guests: Cyndi Zagieboylo, Dr. Pam Valentine, Prof. Des Graham, Nick Moberly, Klaus Holm, Tim Coetzee, Kathy Smith, Dr. Anne-Katrin Probstel, and Dr. Naila Makhani
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 08 May 2023 - 40min - 372 - Episode 296: Everything You Should Know About MS Relapses with Dr. Sam Hooshmand
This week, we're in New York, attending the Pathways To Cures Global Summit. The National MS Society is convening the world -- bringing together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry and people affected by MS -- to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years. Don't miss next week's episode of RealTalk MS, when you'll hear from many of the experts on hand for this historic meeting.
In this week's episode, we're talking about exacerbations, flares, attacks -- these are just some of the words we use when we're describing an MS relapse. Relapses impact over 85% of the people living with MS. And today, we're reviewing the things you need to know when it comes to MS relapses with Dr. Sam Hooshmand, the Director of the Multiple Sclerosis Clinic at the Milwaukee Veterans Affairs Medical Center, and Assistant Professor of Neurology at the Medical College of Wisconsin.
We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we're adding some motivation to that invitation by giving you an opportunity to win a $100 Amazon gift card.
We'll introduce you to a remarkable MS research scientist and the Chair of the National MS Society's Scientific Advisory Committee, Dr. Tika Benveniste.
We're sharing the outcome of a study that compared the benefits of yoga and physical therapy for people living with MS.
And we'll tell you about a first-of-its-kind collaboration between Cariloop and Walgreens that's designed to support MS caregivers.
We have a lot to talk about! Are you ready for RealTalk MS??!
Greetings from the Pathways to Cures Global Summit :22
Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! 2:09
This Week: Everything you should know about MS relapses 2:49
Meet the Chair of the National MS Society's Scientific Advisory Committee, Dr. Tika Benveniste 3:35
Study compares the benefits of yoga and physical therapy for people living with MS 16:53
Cariloop and Walgreens announce collaboration to support MS caregivers 21:19
Dr. Sam Hooshmand reviews everything you should know about MS relapses 24:13
Share this episode 34:09
Please remember to take our listener survey! 34:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/296
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Episode 125: From the Pathways To Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 238: The Pathways To Cures Research Roadmap https://realtalkms.com/238
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 1 https://realtalkms.com/barancik1
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 2 https://realtalkms.com/barancik2
STUDY: Yoga vs Physical Therapy in Multiple Sclerosis: Results of a Randomized Controlled Trial and the Training Protocol https://journals.sagepub.com/doi/full/10.1177/09727531231161994
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 296 Guests: Dr. Tika Benveniste and Dr. Sam Hooshmand
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 01 May 2023 - 35min - 371 - Episode 295: Numbness, Tingling, Pain, Itch -- Managing Common MS Sensory Symptoms with Dr. Jeffrey Hernandez
In this week's episode, we're talking about a set of MS symptoms that can range in intensity from mildly annoying to completely debilitating. These symptoms include numbness, tingling, pain, that "electric shock" feeling you might experience traveling down the back of your neck, and the infamous MS hug.
Joining me to walk us through how to best manage these sensory symptoms is Dr. Jeffrey Hernandez. Dr. Hernandez is a doctorally prepared nurse practitioner who specializes in multiple sclerosis.
We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we're adding some motivation to that invitation by giving you an opportunity to win a $100 Amazon gift card.
And we're inviting you to get up close and personal with some of the most brilliant MS researchers in the world in Parts 1 and 2 of our two-part special podcast series, Barancik Prize Conversations.
We'll share an amazing essay about living with progressive MS that was written by author and artist, Elizabeth Jameson, and published in the San Francisco Chronicle.
You'll hear my recent conversation with one of the leading experts in the world on autologous hematopoietic stem cell therapy (aHSCT), Dr. Jeffrey Cohen.
And we'll tell you about how you can participate in the Targeted Exercise for African-Americans with Multiple Sclerosis (TEAAMS) study.
We have a lot to talk aboJut! Are you ready for RealTalk MS??!
Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! :34
This Week: Managing MS Sensory Symptoms 1:13
Don't miss Parts 1 and 2 of our special series, Barancik Conversations 2:08
Elizabeth Jameson's essay in the San Francisco Chronicle 4:26
Dr. Jeffrey Cohen discusses innovation in MS research and autologous hematopoietic stem cell transplantation (aHSCT) 13:23
How you can participate in the Targeted Exerecise for African-Americans with Multiple Sclerosis (TEAAMS) study 25:34
Dr. Jeffrey Hernandez talks about managing numbness, tingling, pain, and other MS sensory symptoms 28:48
Share this episode 41:59
Please remember to take our listener survey! 42:20
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/295
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 1 https://realtalkms.com/barancik1
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 2 https://realtalkms.com/barancik2
Project TEAAMS Information and Registration https://projectteamms.ahs.uic.edu PHONE: (833) 727-1887
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 295 Guests: Dr. Jeffrey Cohen and Dr. Jeffrey Hernandez
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 24 Apr 2023 - 43min - 370 - Special Episode: Barancik Prize Conversations -- Part 2
Welcome to Part 2 of a special two-part RealTalk MS series highlighting conversations with past recipients of the Barancik Prize for Innovation in MS Research.
The Barancik Prize is awarded at the annual meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis, a meeting better known as the ACTRIMS Forum. Several past Barancik Prize winners gathered at the 2023 ACTRIMS Forum to celebrate the 10th anniversary of the Barancik Prize, and I took that opportunity to chat with this remarkable group of MS research all-stars.
Part 2 of Barancik Prize Conversations features the 2018, 2020, and 2022 Barancik Prize winners.
Dr. Katerina Akassolgou, of the Gladstone Institute of Neurological Disease, was awarded the Barancik Prize in 2018 for her work understanding the role of fibrin-related nerve damage in MS and designing potential therapies to prevent neurodegeneration.
Dr. Dwight Bergles, of Johns Hopkins University, received the Barancik Prize in 2020 in recognition of his pioneering research in understanding the brain cells involved in myelin repair.
Dr. Ruth Ann Marrie, of the University of Manitoba, is the 2022 recipient of the Barancik Prize in recognition of her groundbreaking contributions to our understanding of MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
About the Barancik Prize Conversations :18
Dr. Katerina Akassoglou 2:03
Dr. Dwight Bergles 10:00
Dr. Ruth Ann Marrie 20:58
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/barancik2
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode: Barancik Prize Conversations -- Part 2 Guests: Dr. Katerina Akassoglou, Dr. Dwight Bergles, and Dr. Ruth Ann Marrie
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyWed, 19 Apr 2023 - 37min - 369 - Episode 294: Disclosing Your MS in the Workplace with Christina Forster
Disclosing your MS to your employer is an important decision that can sometimes be tricky and can sometimes lead to unintended consequences. Joining me to discuss some of the things you want to be thinking about when it comes to disclosing your MS in the workplace is a Manager on the Benefits, Employment, and Insurance Team at the National MS Society, Christina Forster.
We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we're adding some motivation to that invitation by giving you an opportunity to win a $100 Amazon gift card.
And we're inviting you to get up close and personal with some of the most brilliant MS researchers in the world in Part 1 of our two-part special podcast series, Barancik Prize Conversations.
While we're talking about brilliant MS researchers, we're also revealing this year's recipient of the John Dystel Prize for MS Research.
We'll share some of the details surrounding the partial hold that the FDA has imposed on three different Phase 3 clinical trials for a new category of MS disease-modifying therapy.
We'll tell you about a small clinical trial that demonstrated the benefit of telerehabilitation in improving MS-related bladder problems.
And we'll tell you about an upcoming clinical trial for the first MS disease-modifying therapy to be formulated as a nasal spray.
We have a lot to talk about! Are you ready for RealTalk MS??!
Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! :22
This Week: Disclosing your MS in the workplace 1:15
Don't miss Part 1 of our special series, Barancik Conversations 2:07
And the winner of the John Dystel Prize for MS Research is... 4:05
The FDA has put a temporary hold on three Phase 3 clinical trials for a new category of MS disease-modifying therapy 5:42
STUDY: Telerehabilitation shown to be successful in managing MS-related bladder problems 8:39
Tiziana Life Scences announces Phase 2 clinical trial for Foralumab, the first MS disease-modifying therapy to be formulated as a nasal spray 12:05
Christina Forster reviews the things you'll want to consider when you're thinking about disclosing your MS to your employer 14:11
Share this episode 30:01
Please remember to take our listener survey! 30:21
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/292
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 1 https://realtalkms.com/barancik1
STUDY: Effects of Pelvic Floor Muscle Training Applied with Telerehabilitation in Patients with Multiple Sclerosis Having Lower Urinary Tract Symptoms: A Randomized Controlled Study https://tandfonline.com/doi/abs/10.1080/07399332.2023.2190593
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 294 Guests: Christina Forster
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 17 Apr 2023 - 31min - 368 - Special Episode: Barancik Prize Conversations -- Part 1
Welcome to Part 1 of a special two-part RealTalk MS series highlighting conversations with past recipients of the Barancik Prize for Innovation in MS Research.
The Barancik Prize is awarded at the annual meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis, a meeting better known as the ACTRIMS Forum. Several past Barancik Prize winners gathered at the 2023 ACTRIMS Forum to celebrate the 10th anniversary of the Barancik Prize, and I took that opportunity to chat with this remarkable group of MS research all-stars.
Part 1 of Barancik Prize Conversations features the 2014 and 2016 Barancik Prize winners.
Dr. Philip De Jager, of Columbia University, was awarded the Barancik Prize in 2014 for applying powerful analytic approaches to better understanding how genes and the environment interact, with the goal of developing personalized treatments for MS and, ultimately, disease prevention.
Dr. Daniel Reich, of the NIH Institute of Neurological Disorders and Stroke, received the Barancik Prize in 2016 for innovating approaches to imaging MS disease activity, creating new pathways to better treatments.
We have a lot to talk about! Are you ready for RealTalk MS??!
About the Barancik Prize Conversations :18
Dr. Philip De Jager 2:03
Dr. Daniel Reich 19:49
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/barancik1
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode: Barancik Prize Conversations -- Part 1 Guests: Dr. Philip De Jager and Dr. Daniel Reich
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyWed, 12 Apr 2023 - 30min - 367 - Episode 293: An Update on Diet and MS with Dr. Ilana Katz Sand
You've told me that the subject of diet and MS is one of your top three interests. And a quick scan of social media platforms reveals that a lot of people living with MS agree!
This week, Dr. Ilana Katz Sand, the Associate Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai, joins me with an update on what the latest research is revealing about the impact of diet on MS, and to answer that eternal question -- Is there an MS diet?
We're also talking about the launch of OCTOPUS, a groundbreaking clinical trial for progressive MS.
We'll talk with Dr. Erin Longbrake, the principal investigator in CELLO, a national clinical trial that's focused on potentially neutralizing MS before symptoms even develop.
And if you're living with MS and you're looking for one more reason to stop smoking, we're sharing some recently published sobering evidence.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: An update on the impact of Diet on MS :22
OCTOPUS, a groundbreaking clinical trial for progressive MS launches 1:17
Principal investigator Dr. Erin Longbrake discusses the importance of the CELLO study 4:06
STUDY: People with MS who continue to smoke may be facing multiple negative outcomes over time 10:33
Dr. Ilana Katz Sand updates us on the latest research and evidence of how diet impacts MS 16:03
Share this episode 38:58
Have you downloaded the free RealTalk MS app? 39:19
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/293
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register Your Interest in Participating in OCTOPUS https://ukmsregister.org/octopus
Details about participating in the CELLO Study https://cellostudy.org
STUDY: Influence of Oral Tobacco Versus Smoking on Multiple Sclerosis Disease Activity and Progression https://jnnp.bmj.com/content/early/2023/03/30/jnnp-2022-330848
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 293 Guests: Dr. Erin Longbrake and Dr. Ilana Katz Sand
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy PolicyMon, 10 Apr 2023 - 40min
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