Last week, the National Multiple Sclerosis Society and the European Committee for Treatment and Research in Multiple Sclerosis convened a meeting in Dublin, Ireland, to dive deeper into what a new framework for describing MS might look like.   There's still a tremendous amount of work to be done here. But, considering that whatever language is eventually adopted will affect every person living with MS, I want to keep you fully informed on this important work. So I'm devoting this entire episode of the podcast to sharing conversations I had with three of the attendees at the meeting in Dublin. 

 

First, you'll hear from Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research. Then, you'll hear from Dr. Daniel Ontaneda, a neurologist specializing in MS at the Cleveland Clinic, and, finally, you'll hear from Kathy Smith, who's lived with MS for the past 20 years.   As you listen to these conversations, I think you'll hear three slightly different perspectives, but you'll also hear some of the broad concepts and ideas around which there was a high level of agreement at our meeting.

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

This Week: A meeting to discuss moving to a biologically based description of MS  :22

Dr. Bruce Bebo discusses how a new framework for describing MS could impact MS research and people living with MS  3:45

Dr. Daniel Ontaneda describes some of the shortcomings of the current MS course descriptors and discusses how a new framework for describing MS could impact   people living with MS  17:34

Kathy Smith explains how current MS course descriptors fail to fully capture her experience as someone living with MS, and explains how new course descriptors could benefit people living with MS  26:24

What's next in the work to develop new course descriptors for MS  35:20

Share this episode  35:44

Have you downloaded the free RealTalk MS app?  36:03

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/403

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

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 403 Guests: Dr. Bruce Bebo, Dr. Daniel Ontaneda, Kathy Smith

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If you're living with MS, you might experience days when it feels like you're losing your sense of who you are, as your sense of self gets redefined by your symptoms. Reasserting your personal style can be a powerful way to rediscover joy in who you are while reclaiming your identity. 

 

Jeri Zink Denz lives with MS and works in the luxury fashion industry. She's always been passionate about fashion and personal style, and Jeri joins me to discuss how you can find and define your personal style, despite the challenges that MS may present.

We'll also explain the hidden outcome of the massive agency layoffs and drastic cuts in federal funding for healthcare research, and this is the outcome that can affect research for decades to come.

We're sharing the results of a study that may have identified a biomarker for rapid MS progression.

We'll tell you about the game-changing artificial intelligence project that received a $750,000 investment from the International Progressive MS Alliance.

And you'll find out how and where you can register for the upcoming Hispanic/Latinx MS Experience Summit.

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

This Week: Reasserting your personal style can be a powerful way to rediscover joy in who you are in spite of the challenges that MS may present.   :22

Layoffs + funding cuts = brain drain  1:08

Have researchers found a biomarker for rapid MS progression?  4:51

The International Progressive MS Alliance has invested $750,000 in what could be a game-changing AI project  9:09

The National MS Society's Hispanic/Latinx MS Experience Summit is just 8 days away  10:59

Jeri Zink Denz discusses why it's especially important (and even therapeutic!) to assert your personal style when you're living with MS  12:22

Share this episode  29:31

Have you downloaded the free RealTalk MS app?  29:50

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/402

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

STUDY: Broad Rim Lesions are a New Pathological and Imaging Biomarker for Rapid Disease Progression in Multiple Sclerosis https://nature.com/articles/s41591-025-03625-7

International Progressive MS Alliance https://progressivemsalliance.org

Hispanic/Latinx MS Experience Summit Info & Registration https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience

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 402 Guest: Jeri Zink Denz

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Most people living with MS don't see their neurologist often. For many, it might be only once or twice a year. A lot of important things take place during that appointment. Symptoms are assessed. Decisions about disease-modifying therapies are made or, sometimes, changed. Questions get asked and, hopefully, answered.

 

Dr. Barbara Giesser returns to the podcast, this time, to review the things that should be discussed and followed up on at your appointment with your neurologist or MS specialist.

We're also sharing some good news about MS research funding from the National MS Society and the International Progressive MS Alliance.

We'll tell you how you can catch the replay of the International Progressive MS Alliance's webcast focused on putting people with MS at the center of MS research.

We're sharing the encouraging outcome of the Phase 2 clinical trial for vidofludimus calcium and progressive MS.

We'll tell you how you or a family member can participate in the GEMS study.

And we'll tell you about a new AI tool that can accurately diagnose a patient's transition from relapsing-remitting MS to secondary progressive MS, often before a clinician can!

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

This Week: What (should) happen during your appointment with your neurologist  :22

National MS Society invests $18.1 million in new research  1:04

International Progressive MS Alliance funds 3 clinical trial development projects  3:53

Catch the replay of the International Progressive MS Alliance webcast focused on putting people with MS at the center of research  6:56

Immunic Therapeutics announces positive results from the Phase 2 clinical trial evaluating vidofludimus calcium for progressive MS  7:45

You or a family member may qualify to participate in the GEMS study  10:00

AI tool can accurately diagnose the transition from relapsing-remitting MS to secondary progressive MS  12:01

Dr. Barbara Giesser discusses the kinds of conversations you should be having during your appointment with your neurologist  16:49

Share this episode  30:38

Have you downloaded the free RealTalk MS app?  31:00

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/401

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

National MS Society Commits $18.1 Million for Research (Projects Being Funded) https://cdn.sanity.io/files/y936aps5/production/a788b2e3d8409173a4de417fcf3bebcfbddddc41.pdf

International Progressive MS Alliance https://progressivemsalliance.org

International Progressive MS Alliance Webcast: Putting People with MS at the Center of Research https://youtube.com/watch?v=uacSJ7ZxuRM

Participate in MS Research: The GEMS Study https://recruit.cumc.columbia.edu/studyinfopage/1419

GEMS Study Contact: Juliana Oyegunle Email: [email protected] Phone: (212) 305-2434

STUDY: Conformal Prediction Enables Disease Course Prediction And Allows Individualized Diagnostic Uncertainty in Multiple Sclerosis https://www.nature.com/articles/s41746-025-01616-z

Multiple Sclerosis Progression Tracker https://msp-tracker.serve.scilifelab.se/

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 401 Guests: Dr. Barbara Giesser

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Welcome to the 400th episode of RealTalk MS! Over the past nearly eight years, it's been my absolute honor to bring you insights from leading experts, researchers, advocates, and, perhaps most importantly, from people living with MS themselves. And we have no intention of stopping here! We're excited to continue bringing you the information and conversations that matter most to the MS community.

 

In this episode of the podcast, Dr. Tim Coetzee, President and CEO of the National MS Society, looks back at a significant milestone that took place eighty years ago. Tim also shares his detailed vision of the future for people living with MS, and discusses some of the cutting-edge MS research that he's most excited about.

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

This Week: Welcome to episode 400!  :18

Dr. Tim Coetzee, President and CEO of the National MS Society, looks back at the past, shares his vision of the future, and discusses the MS research that he's most excited about  2:32

Share this episode  30:31

Have you downloaded the free RealTalk MS app?  30:50

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/400

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

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 400 Guests: Dr. Tim Coetzee

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Research shows that spirituality can benefit mental health and improve overall well-being. And it can play a meaningful role in helping people cope with life’s challenges, like living with MS. This week, Dr. Mana Ali Carter, a rehabilitation psychologist at MedStar National Rehabilitation Hospital in Washington D.C., joins me to discuss the positive effects that spirituality can have on the mind and body, and how it's been shown to make a difference for people living with MS.

 

We're also sharing encouraging initial reports from a Phase 1 clinical trial for KYV-101, Kyverna's investigational CAR-T therapy for MS.

We'll tell you about a positive report on two years of data from a Phase 2 clinical trial extension study for Frexalimab, a novel investigational disease-modifying therapy from Sanofi.

We'll explain how the decision to discontinue federal matching funds for designated state health programs will have a direct impact on some people living with MS.

And we'll tell you how you can register for the National MS Society's webinar in support of restoring federal funding for the MS Research Program.

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

This Week: How spirituality can make a difference if you're living with MS  :22

Initial reports from a Phase 1 clinical trial for a CAR-T therapy are encouraging  1:15

Two years of data from a Phase 2 extension study of Frexalimab are positive  3:07

The federal government will no longer provide matching funds for designated state health programs  5:47

The National MS Society is hosting a virtual event to support restoring federal funding for the MS Research Program  8:38

Dr. Mana Ali Carter explains how spirituality can make a difference in your life if you're living with MS  11:27

Share this episode  30:40

Have you downloaded the free RealTalk MS app?  31:01

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/399

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

Participate in a Sanofi Clinical Trial https://sanofistudies.com

Register for a Virtual Event: Restore the MS Research Program https://nmss.quorum.us/event/23043

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 399 Guests: Dr. Mana Ali Carter

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Last week, at the American Academy of Neurology annual meeting, Dr. Amit Bar-Or received the John Dystel Prize for Multiple Sclerosis Research for his multiple achievements that have advanced our knowledge of neuroimmunology, precision medicine, and biomarkers in MS. We talked with Dr. Bar-Or about how some of the latest discoveries in MS research would impact patient care.

 

Tolebrutinib, an investigational disease-modifying therapy, is currently making its way through the FDA's regulatory process. Last week, the results of the Phase 3 clinical trials for Tolebrutinib were published, and we're sharing the details.

We'll also tell you about MindGlide, an AI-powered tool for analyzing MRI scans that will significantly reduce MRI exam times.

We're talking about the results of the Phase 3 clinical trial for high-dose Ocrevus.

And we'll tell you about a cell therapy that doesn't use stem cells that successfully repaired myelin in the mouse model of MS -- twice! 

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

Congratulations to Dr. Stephen Hauser and Dr. Alberto Ascherio  :22

This Week: The impact of breakthrough MS research on MS care  2:17

Results of the phase 3 clinical trials for Tolebrutinib have been published  3:07

An AI-powered tool for analyzing MRI scans will significantly reduce MRI exam times for patients  4:21

Results of the phase 3 clinical trial for high-dose Ocrevus  8:13

A cell therapy that doesn't use stem cells has successfully repaired myelin in the mouse model of MS -- twice!  10:14

Dystel Prize winner Dr. Amit Bar-Or discusses how some of the latest discoveries in MS  research will impact MS care  12:39

Share this episode  22:36

Have you downloaded the free RealTalk MS app?  22:56

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/397

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

RealTalk MS Episode 310: The Face Laughs While The Brain Cries: The Education of a Doctor with Dr. Stephen Hauser https://realtalkms.com/310

RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh https://realtalkms.com/ectrims244

VIDEO: RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh https://youtu.be/zcBmAHRTotA

VIDEO: RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Nonrelapsing Secondary Progressive MS with Dr. Robert Fox https://youtu.be/tJQ93qdlXrU

STUDY: Tolebrutinib Versus Teriflunomide in Relapsing Multiple Sclerosis https://nejm.org/doi/full/10.1056/NEJMoa2415985

STUDY: Tolebrutinib in Nonrelapsing Secondary Progressive Multiple Sclerosis https://nejm.org/doi/full/10.1056/NEJMoa2415988

Enabling New Insights from Old Scans By Repurposing Clinical MRI Archives for Multiple Sclerosis Research https://www.nature.com/articles/s41467-025-58274-8

Fibroblast Technology https://fibrobiologics.com/technology/#cnsms

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 398 Guests: Dr. Amit Bar-Or

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For many people, it can be difficult to talk about the feelings of loss that can accompany MS. For some, it's the loss of the way they imagined their life would turn out. For others, it's the more specific loss of function. Perhaps the loss of their mobility. Or a decline in their cognitive skills. It's painful to imagine any of these scenarios, let alone experience them in real life. 

 

The human response to loss is grief. And grieving itself can affect your physical, emotional, and cognitive health. Joining me today to discuss how grieving can affect you, along with ways to best manage grief, is Dr. Mary-Frances O'Connor.

Dr. O'Connor is a professor of psychology at the University of Arizona, where she directs the Grief, Loss, and Social Stress Lab, investigating the effects of grief on the brain and the body. Dr. O'Connor also lives with MS, and the title of her new book is The Grieving Body: How the Stress of Loss Can Be an Opportunity for Healing.

We'll also share the results of a study on MS fatigue in Finland.

We'll tell you about a study that focused on sexual dysfunction among women living with MS in Iran.

You'll learn what a research team discovered when they connected sick days from work with the prodromal phase of MS.

And we're sharing a new resource from the MS International Federation that will help you assess which wellness practices and complementary therapies may be beneficial for you.

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

This Week: Managing the grief that comes from living with MS  :22

Results from a Finnish study adds further evidence to what we know about MS fatigue  1:36

Results of a study that focused on sexual dysfunction among women living with MS in Iran  3:13

Can job-related sick days help researchers better understand the prodromal phase of MS?  5:48

The MS International Federation has produced a very worthwhile guide to wellness practices and complementary therapies for people with MS  10:49

Dr. Mary-Frances O'Connor discusses managing the grief that accompanies being diagnosed with MS  12:42

Share this episode  34:02

Have you downloaded the free RealTalk MS app?  34:22

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/397

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

STUDY: Evaluation of Patient-Perceived Fatigue in Multiple Sclerosis Using the Finnish MS Registry https://journals.sagepub.com/doi/10.1177/20552173251325098

STUDY: The Prevalence of Sexual Dysfunction and Its Contributors Among the Women with Multiple Sclerosis https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-025-03653-y

STUDY: The Prodromal Phase of Multiple Sclerosis: Evidence from Sickness Absence Patterns Before Disease Onset -- A Matched Cohort Study https://jnnp.bmj.com/content/early/2025/03/25/jnnp-2024-335279.full

STUDY (PLAIN ENGLISH VERSION): The Prodromal Phase of Multiple Sclerosis: Evidence from Sickness Absence Patterns Before Disease Onset -- A Matched Cohort Study https://tremlettsmsresearchexplained.wordpress.com/2025/03/26/the-prodromal-phase-of-multiple-sclerosis-evidence-from-sickness-absence-patterns-before-disease-onset-a-matched-cohort-study-explained

DOWNLOAD: Wellness Practices and Complementary Therapies in MS https://msif.org/resources/wellness-practices-and-complementary-therapies/

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 397 Guests: Dr. Mary-Frances O'Connor

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Managing MS means staying focused not only on your MS but also on your overall health. That includes getting routine health screenings to stay ahead of potential complications. Recent research has shown that, compared to healthy people, people with MS are more likely to develop some cancers. 

 

Clinician-scientist Dr. Ruth Ann Marrie joins me to discuss which cancers pose a greater risk to someone with MS, why you need to make those appointments for cancer screenings, where you can find low-cost or no-cost cancer screenings, and things you can do to further minimize your risk of developing cancer.

Dr. Marrie is a professor of medicine and the Multiple Sclerosis Clinical Research Chair at Dalhousie University in Canada. She's a past recipient of the Barancik Prize for Innovation in MS Research and is recognized as one of the world's leading MS experts.

We'll also explain how and why we're going to be discussing the impact of those devastating federal budget cuts and mass layoffs in the federal agencies responsible for healthcare and MS research on this podcast.

We'll tell you about the FDA's decision to grant priority review to Tolebrutinib. (We'll also explain why Tolebrutinib isn't just another DMT. We're even sharing the projected date when the FDA will make its approval decision!)

And you'll learn what happened when a research team set out to identify the diversity-related characteristics of the MS population in Canada.

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

How we'll be talking about the impact of public policy on people affected by MS (and why we must)  :22

Hear what's on the minds of some of the attendees at last week's National MS Society Public Policy Conference  3:55

This Week: The importance of cancer screenings for people with MS  12:52

Tolebrutinib, an investigative DMT from Sanofi, is granted priority review by the FDA  13:44

What happened when researchers set out to identify the diversity-related characteristics of the MS population in Canada  17:56

Dr. Ruth Ann Marrie discusses the importance of cancer screenings for people living with MS  20:02

Share this episode  30:03

Have you downloaded the free RealTalk MS app?  30:23

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/396

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

VIDEO: Tolebrutinib and Non-Relapsing Secondary Progressive MS with Dr. Robert Fox https://realtalkms.com/tolebrutinib1

VIDEO: Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh https://realtalkms.com/tolebrutinib2

VIDEO: RealTalk MS 2025 ACTRIMS Forum YouTube Playlist https://realtalkms.com/actrims

STUDY: Characterizing the Diversity of the Multiple Sclerosis Population in Canada: A Scoping Review https://journals.sagepub.com/doi/10.1177/20552173251321814

STUDY (PLAIN ENGLISH VERSION): Characterizing the Diversity of the Multiple Sclerosis Population in Canada: A Scoping Review https://tremlettsmsresearchexplained.wordpress.com/2025/03/20/characterizing-the-diversity-of-the-multiple-sclerosis-population-in-canada-a-scoping-review-explained

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 396 Guests: Dr. Ruth Ann Marrie

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When you look at a list of the typical symptoms associated with perimenopause, you'd think you were looking at a list of MS symptoms. And, for women living with MS, that's where the confusion begins. With an estimated 30% of the current MS population now in peri- or post-menopause, researchers are beginning to focus on how menopause and MS interact and the best ways to treat symptoms.

 

Dr. Riley Bove, a neurologist and founding director of the Sex and Gender-Enriched (SAGE) Neurology Program at the University of California San Francisco, joins me to talk about the things you need to know when you're managing MS while you're managing menopause.

We'll also tell you about this year's winner of the John Dystel Prize for Multiple Sclerosis Research.

We'll share a deeply personal poem written by a friend who's been living with MS since 1988.

And we'll tell you about the results of a study that should be a reminder of the importance of starting disease-modifying therapy and the value of early intervention.

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

This Week: We're in Washington, D.C., at the National MS Society's Public Policy Conference  :22

Dr. Amit-Bar-Or is the winner of the 2025 John Dystel Prize for Multiple Sclerosis Research  2:26

Magician Wayne Dobson's poem  7:07

STUDY: Cognitive impairment is prevalent among people living with untreated MS  10:23

Dr. Riley Bove talks about the things you need to know when you're managing MS while you're managing perimenopause and menopause  14:18

Share this episode  32:56

Have you downloaded the free RealTalk MS app?  33:16

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/395

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

RealTalk MS 2025 ACTRIMS Forum YouTube Playlist https://www.youtube.com/playlist?list=PLATxgj1uHpxNEoc2-9_7-Wzmr96B7wt2C

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 395 Guests: Dr. Riley Bove

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Next week, a couple of hundred MS activists will gather in Washington, D.C. for the National MS Society's Public Policy Conference. As we're seeing devastating cuts in funding for MS research, layoffs in every major governmental agency that impacts our healthcare, including the National Institutes of Health, the FDA, CDC, Health and Human Services, and the Department of Veterans Affairs, and even Medicaid funding is at serious risk, advocacy has never been more important than it is right now. 

 

I'm devoting this entire episode to a conversation with Steffany Stern, the National MS Society's Vice President for Advocacy, who joins me to assess the current legislative climate in Washington, D.C., and give us a preview of the issues that will take center stage at this year's Public Policy Conference. 

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

This Week: Is there anything more urgent and important to discuss than advocacy?  :22

Steffany Stern discusses the current legislative climate in our nation's capitol, and gives us a sneak peek at next week's National MS Society Public Policy Conference  2:16

Share this episode  25:40

Have you downloaded the free RealTalk MS app?  26:08

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/394

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

Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: [email protected]

RealTalk MS 2025 ACTRIMS Forum YouTube Playlist https://www.youtube.com/playlist?list=PLATxgj1uHpxNEoc2-9_7-Wzmr96B7wt2C

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 394 Guests: Steffany Stern

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