RealTalk MS

The annual meeting of the American Academy of Neurology is underway in Chicago this week, and one of the highlights is the presentation of the John Dystel Prize for Research in Multiple Sclerosis, awarded jointly by the National MS Society and the American Academy of Neurology.
This year's winner of the Dystel Prize is Dr. Ludwig Kappos, a physician-scientist at the University Hospital Basel in Basel, Switzerland, and the director of the Research Center for Clinical Neuroimmunology and Neuroscience Basel.


Dr. Kappos has played a major role in how clinical trials in MS are conducted. He helped establish the Expanded Disability Status Scale, or EDSS, which is the gold standard for measuring disability in people with MS, and Dr. Kappos and his team have advanced our current understanding of a key driver of disability in MS, known as progression independent of relapse activity, or PIRA. 
Dr. Kappos will be delivering the Dystel Prize lecture at the American Academy of Neurology meeting this week, and he's joining us to share a preview of that lecture in a conversation you won't want to miss.
We're also sharing news about a blood test used to monitor MS disease activity that has just been approved by the European Union.
We'll give you the details of a study focused on whether disease-modifying therapies can impact neurodevelopmental birth defects in children born to mothers with MS.
We'll explain why yaks and Tibetan antelope may have opened a door to neuroprotection and myelin repair for people living with MS.
And we'll tell you where healthcare providers and patients may differ when it comes to defining high-quality MS care.


We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: The John Dystel Prize for Multiple Sclerosis Research is awarded  :22
A blood test to monitor MS disease activity is approved by the EU  2:28
Researchers determine whether disease-modifying therapies have an impact on neurodevelopmental birth defects among children born to mothers with MS  4:21
Researchers studying yaks and Tibetan antelope may have uncovered a pathway to neuroprotection and even myelin repair  7:24
Healthcare providers and people living with MS share their perspectives on what needs improvement in delivering high-quality MS care  10:01
Dr. Ludwig Kappos reflects on how MS clinical trials need to change  13:33
Share this episode  30:58
Next week  31:19

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/451
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: [email protected]
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 at www.RealTalkMS.com
STUDY: Association of Neurodevelopmental Disorders and Congenital Anomalies with Prenatal Multiple Sclerosis Treatment: Real World Historial Cohort Study
https://ascpt.onlinelibrary.wiley.com/doi/10.1002/cpt.70235
STUDY: A Gain-of-Function Retstat Variant from High-Altitude Adaptation Promotes Myelination Via a Neuronal Dihydroretinoic Acid-RXR-Y Pathway
https://www.cell.com/neuron/fulltext/S0896-6273(26)00013-9
ARTICLE: Areas for Improvement for High-Quality Multiple Sclerosis Care: Insights from Interviews with People with Multiple Sclerosis, Providers, and Clinical Educators
https://sciencedirect.com/science/article/abs/pii/S1936657426000300
AbleNOW
https://ablenow.com

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 451
Guest: Dr. Ludwig Kappos
Privacy Policy

An exercise program can be hard to start and even more difficult to stick with. But the evidence-based benefits speak for themselves. For people living with MS, it can mean improving quality of life without having to rely on a pill, injection, or infusion. And exercise is 100% affordable!


Dr. Robert Motl, the Director of the Exercise Neuroscience Research Laboratory at the College of Applied Health Sciences at the University of Illinois Chicago, joins me to discuss how exercise can improve MS-related brain fog, reduce fatigue, and perhaps even support myelin repair.
We'll also share the results of a study that shows having mononucleosis is a significant risk factor for developing MS.
And we'll tell you about a powerful imaging agent that can identify which immune cells are causing the inflammatory activity that drives MS, determine disease severity, and track the immune system's response to disease-modifying therapy. It's a potential game-changer in MS care.


We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Evidence-based benefits of exercise for people living with MS  :22
Study results show that having mono increases the chance that someone will develop MS  1:28
Researchers have created an imaging agent with the potential to be a game-changer in diagnosing and treating MS  4:29
Dr. Robert Motl explains how and why exercise can be medicine for people with MS  10:04
Share this episode  31:50
Next week  32:10

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/450
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: [email protected]
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 at www.RealTalkMS.com
STUDY: Risk of Multiple Sclerosis Among Persons with Epstein-Barr Virus-Positive Mononucleosis
https://www.neurology.org/doi/10.1212/WN9.0000000000000082
STUDY: A Radiolabeled Dendrimer Non-Invasively Identifies and Tracks Innate Immune Cell Activation in a Mouse Model of Experimental Autoimmune Encephalomyelitis
https://www.nature.com/articles/s41467-025-67907-x
AbleNOW
https://ablenow.com

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 450
Guest: Dr. Robert Motl
Privacy Policy

When you join the iConquer MS community, you're no longer just a patient; you become a research partner. Not just a data point in someone's study. You become the person to suggest the study, to help define the study, and to participate in sharing the outcome of the study.


In this week's episode, I talk with the iConquer MS leadership team about what it means to be part of this people-powered research revolution and how iConquer MS keeps people affected by MS at the center of MS research.
The National Institutes of Health has just published a Strategic Plan for Disability Health Research. We're sharing all the details.
And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.
And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.


We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're talking about people-powered MS research  :22
The NIH has published a Strategic Plan for Disability Health Research  1:15
Researchers determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) are cost-effective  6:05
Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt discuss what it means to put people affected by MS at the center of MS research  12:41
Share this episode  36:26
Next week  36:45

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/449
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: [email protected]
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 at www.RealTalkMS.com
iConquer MS
https://iconquerms.org

National Institutes of Health Strategic Plan for Disability Health Research
https://dpcpsi.nih.gov/disabilityhealthresearch
STUDY: Economic Value of Anti-CD20 Therapies in Multiple Sclerosis: A Systematic Review of Cost-Effectiveness Studies
https://journals.sagepub.com/doi/10.1177/17562864261426816
AbleNOW
https://ablenow.com

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 449
Guests: Sara Loud, Stephanie Buxoeveden, and Hollie Schmidt
Privacy Policy

Last week, about 170 MS activists from across the country gathered in Washington, D.C. to participate in the National MS Society's Public Policy Conference. It's hard to come away from this event and not feel outraged by the stories that are shared, but also inspired by the resilience and bravery of the MS Activists who are willing to share some of the worst moments in their MS journey to make sure that our elected representatives in the House and Senate understand why the legislation we ask them to support is so vitally important.
 

 
I met so many truly amazing MS activists at this year's Public Policy Conference, and you'll meet some of them in this week's episode.
 
We're also sharing survey results that paint a disturbing picture of the human consequences that resulted from losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees 


The National MS Society has invested $2.3 million in 11 research projects focused on women's health issues and MS. We're sharing details of each new research initiative being funded.
You'll learn about a clinical trial for a novel investigational therapy for MS and other autoimmune diseases.
And we'll tell you about a study that you can participate in from home...and get compensated for your participation!
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're at the Public Policy Conference  :22
Survey results show the human consequences of losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees  4:45
The National MS Society invests $2.3 million dollars in research projects focused on women's health issues and MS  7:23
The first healthy participant is dosed in the clinical trial for ICP-538  11:24 
An opportunity to participate from home in a clinical trial (and there's compensation!)  12:41
MS Activists David, Cliff, and Michelle share their thoughts on attending the MS Society's Public Policy Conference  15:27
Share this episode  30:10
Next week  30:30

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/448
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: [email protected]
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
Support Jon at WALK MS
https://realtalkms.com/walkms

JOIN: Become an MS Activist
https://nationalmssociety.org/advocacy
LISTEN: RealTalk MS Episode 446 -- MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern
https://realtalkms.com/446

SURVEY RESULTS: Cost Concerns and Coverage Changes: A Follow-Up Survey of ACA Marketplace Enrollees
https://www.kff.org/public-opinion/a-follow-up-survey-of-aca-marketplace-enrollees
PARTICIPATE: A Study to Determine How Well Different Fall Prevention Programs Work for People with Spinal Court Injury and Multiple Sclerosis
Email for More Information: [email protected]

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 448
Guests: David Silbaugh, Cliff Currie, and Michelle Constantine Hibbs
Privacy Policy

In 1988, there were just 42 Walk MS events, raising approximately $4 million. In 2025, there were 170 events across the country that raised over $30 million. As the largest private funder of MS research in the world, the National MS Society relies on funds raised at events like Walk MS to continue supporting the work that brings us closer to cures.
 





This week, Brigitte Delaney, an amazing fundraiser and captain of the Many Sisters Walk MS team, shares her story, talks about the origin of the Many Sisters team, and offers her recipe for successful fundraising.
We're also sharing study results that show adhering to the MIND diet slows brain aging (and we'll explain why that matters to someone living with MS)
We'll tell you about NG01, a remyelinating cell therapy that just received an FDA designation that will accelerate its development.
You'll learn about CoPilot Health, Microsoft's new AI health chatbot.
And we're sharing study results that indicate people who receive their MS diagnosis over the age of 50 tend to experience a more severe MS disease course.
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: It's WALK MS!  :22
Study results show that adherence to the MIND diet slows brain aging  1:24
The FDA grants a designation that accelerates development of a remyelinating cell therapy  4:42
Microsoft launches CoPilot Health, an AI health chatbot  7:17 
Study results indicate that people who are diagnosed over the age of 50 often experience a more severe MS disease course  9:32
Brigitte Delaney introduces us to the Many Sisters WALK MS team  12:07
Share this episode  22:28
Next week  22:48

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/447
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: [email protected]
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
Support Jon at WALK MS
https://realtalkms.com/walkms

JOIN: Become an MS Activist
https://nationalmssociety.org/advocacy
STUDY: Adherence to the MIND Diet and Longitudinal Brain Structural Changes Over a Decade: Evidence from the Framingham Heart Study Offspring Cohort
https://jnnp.bmj.com/content/early/2026/3/11/jnnp-2025-336957
STUDY: Effect of Late-Onset on Multiple Sclerosis Phenotype and Outcome: Evidence from a Multi-National Registry
https:/link.springer.com/article/10.1007/s00415-026-13632-4

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 447
Guests: Brigitte Delaney
Privacy Policy