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RealTalk MS

Jon Strum
RealTalk MS
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  • Episode 403: Moving Toward a Biologically Based Description of MS with Dr. Bruce Bebo, Dr. Daniel Ontaneda, and Kathy Smith
    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 Privacy Policy
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  • Episode 402: The Importance of Asserting Your Personal Style When You're Living with MS with Jeri Zink Denz
    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 Privacy Policy
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  • Episode 401: The Things That (Should) Happen at Your Appointment With Your Neurologist with Dr. Barbara Giesser
    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 Privacy Policy
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  • Episode 400: The President and CEO of the National MS Society Looks Back at the Past and Shares a Vision of the Future with Dr. Tim Coetzee
    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 Privacy Policy
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  • Episode 399: How Spirituality Can Make a Difference If You're Living with MS with Dr. Mana Ali Carter
    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 Privacy Policy
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About RealTalk MS

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.
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