Episode 446: MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern
Release Date: 03/16/2026
RealTalk MS
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...
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175 MS activists are heading to Washington, D.C. next week for the National MS Society’s Public Policy Conference. Their mission: to bring the concerns of the MS community directly to lawmakers on Capitol Hill. When it comes to the legislative support for healthcare and medical research, it's no secret that these are unusual times. Joining me to brief us on the National MS Society's ongoing advocacy efforts and give us a sneak peek at the specific legislative issues we'll be taking to Capitol Hill is the National MS Society's Vice President of Advocacy, Steffany Stern. We'll...
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It’s MS Awareness Week, and this year we’re diving into a theme that hits home for millions: Unseen MS. Multiple sclerosis is a master of disguise; it can be entirely invisible to the naked eye while remaining profoundly life-altering for the person living it. In this episode, we’re exploring the spectrum of the MS experience through two distinct, yet deeply connected stories. First, you'll hear from RealTalk MS team member Kristine Werner Ozug. Kristine shares what it’s like to navigate a world that doesn’t always see her struggle, and how her "mostly invisible"...
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You know them by their trade names such as Ozempic, Wegovy, Mounjaro, and Zepbound. This class of medications is known as GLP-1 receptor agonists. And while they are best known for managing diabetes and promoting weight loss, researchers are finding that these drugs are also effective in a broad range of other health conditions. So, what about MS? My guest this week is Dr. Ellen Mowry, the principal investigator of a clinical trial to determine whether a GLP-1 drug can reduce brain inflammation and provide neuroprotection in people living with progressive MS. We're sharing details...
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Welcome back to the third and final part of our coverage of the 2026 ACTRIMS Forum. This week's episode bridges the gap between groundbreaking clinical research and the nuanced reality of living with MS every day. First, we'll dive into the "before" and "after" of a diagnosis, starting with Dr. Helen Tremlett’s insights into the MS prodrome—those subtle, early signs that appear years before typical MS symptoms. We'll also talk with Dr. Tremlett about how other health conditions can predict long-term outcomes in sometimes surprising ways. Dr. Ilana Katz Sand shares her latest...
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Welcome back to Part Two of our coverage of the 2026 ACTRIMS Forum. This week, we shift our focus to emerging therapies and clinical insights that are re-shaping the future of MS care. From the latest information on stem cell transplantation to evolving treatment strategies to the labels used to describe MS, we’re breaking down the complex science into the conversations that matter most to the MS community. Joining me to discuss one of the most significant presentations from the 2026 ACTRIMS Forum is Dr. Jeffrey Cohen, who opened the event with the Kenneth P. Johnson Memorial...
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Last week, over 1,400 scientists and clinicians gathered in San Diego, California, at the 2026 Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum. This week, in Part One of our coverage, you'll hear from three of the experts who presented their research at the ACTRIMS Forum. Dr. Manuel Friese, a clinician-scientist at the Institute of Neuroimmunology and Multiple Sclerosis at the University Medical Center Hamburg-Eppendorf in Hamburg, Germany, where he serves as the Director of the Center for Molecular...
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This past December, the FDA issued a Complete Response Letter to drug manufacturer Sanofi in response to Sanofi's application seeking approval for Tolebrutinib, the first in a new category of investigational disease-modifying therapies to undergo FDA review. A Complete Response Letter is an official letter from the FDA to a drug manufacturer stating that the agency can't approve a new medicine in its current form. It's not an outright "no" that kills a project; it's more like a "not yet." However, this Complete Response Letter raised some issues which, at first...
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The first coordinated global research strategy to prevent MS has been announced. This week, Dr. Bruce Bebo, the National MS Society's Executive Vice President and Chief Research & Medical Affairs Officer, joins me to explain what MS prevention looks like and how experts plan to achieve this remarkable goal. We'll also tell you who won the 2025 Barancik Prize for Innovation in MS Research, and we'll explain how their groundbreaking research impacts MS care. We're sharing the details of a newly announced partnership designed to reduce delays in getting an MS diagnosis and expand...
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One of the more confusing aspects of MS is that it can present differently from one person to the next. A research team at University College London may have uncovered a reason for that when they identified two new, and quite different, subtypes of MS. Joining me to walk us through this discovery and to explain how it may impact MS clinical care is the study's principal investigator, Dr. Arman Eshaghi. We're also sharing study results that may explain how the Epstein-Barr Virus triggers MS in some individuals. We'll tell you about the free online fitness and wellness...
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When it comes to the legislative support for healthcare and medical research, it's no secret that these are unusual times. Joining me to brief us on the National MS Society's ongoing advocacy efforts and give us a sneak peek at the specific legislative issues we'll be taking to Capitol Hill is the National MS Society's Vice President of Advocacy, Steffany Stern.
We'll also share updated results from an important study that show the risk of developing MS if a close relative is living with the disease is significantly higher than researchers originally thought.
And we'll give you all the details of a Phase 1 clinical trial that's focused on a novel approach to CAR-T cell therapy for MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Preparing for the MS Society's Public Policy Conference :22
I'm asking for your support: 1:37
An update to a 2015 study shows close relatives of people living with MS are 100 times more likely than the general population to develop MS 2:15
A novel approach to CAR-T cell therapy for MS is recruiting for a Phase 1 clinical trial 4:26
Steffany Stern, the Vice President of Research at the National MS Society, shares a major advocacy win and previews next week's Public Policy Conference in Washington, D.C. 7:27
Share this episode 33:04
Next week 33:25
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Support Jon at WALK MS
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JOIN: Become an MS Activist
https://nationalmssociety.org/advocacy
STUDY: A Prospective Study of Individuals at Risk of Multiple Sclerosis Informs the Design of Primary Prevention Studies
https://onlinelibrary.wiley.com/doi/10.1002/acn3.70340
GEMS Study Recruitment
https:/nationalmssociety.org/news-and-magazine/news/ms-study-alert-gems
RealTalk MS Ep. 439: Preventing MS with Dr. Bruce Bebo
https://realtalkms.com/439
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RealTalk MS Episode 446
Guests: Steffany Stern