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.

Episode 409: From the International Progressive MS Alliance Digital Tools Workshop 06/30/2025

Episode 409: From the International Progressive MS Alliance Digital Tools Workshop Last week, I was in Philadelphia, attending the Digital Tools Workshop hosted by the International Progressive MS Alliance. Welcome to Part One of our coverage! As we look around us, it's hard to imagine a single aspect of our lives that hasn't been impacted by the constant and rapid evolution of technology. Just consider the capabilities of the device you're using to listen to this podcast. This workshop highlighted the ways that emerging digital tools will accelerate MS clinical trials and enhance personalized MS care. In this week's episode, you'll hear Dr. Robert Fox, the Chair of the International Progressive MS Alliance Scientific Steering Committee, and Dr. Tim Coetzee, President and CEO of the National MS Society, discuss some of the ways digital tools can impact MS research and care, as well as some of the issues that need to be addressed to ensure that everyone living with MS can benefit from these tools. Then, you'll hear the workshop co-chair, Dr. Jennifer Graves, discuss her team's work in developing a digital tool that can accurately determine whether an individual has relapsing-remitting MS or progressive MS -- after a 5-minute test that consists of tapping their fingers and feet! You'll hear Dr. Anne Helme, the Head of Research and Access at the MS International Federation, explain how digital tools can boost patient-reported outcomes in MS research. And you'll hear Dr. Stefan Gold share the positive results of his study involving an at-home digital intervention designed to treat depression among people with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the International Progressive MS Alliance Digital Tools Workshop :22 Dr. Tim Coetzee and Dr. Robert Fox discuss how digital tools will impact MS research and care :54 Dr. Jennifer Graves talks about her team's work in developing a digital tool, and how MS research is being threatened by drastic cuts in federal research funding 9:56 Dr. Anne Helme discusses how digital tools will boost patient-reported outcomes in MS research 16:26 Dr. Stefan Gold shares the positive results of his study involving an at-home digital intervention designed to treat depression among people with MS. 24:06 Share this episode 37:38 Have you downloaded the free RealTalk MS app? 37:58 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 409 Guests: Dr. Tim Coetzee, Dr. Robert Fox, Dr. Jennifer Graves, Dr. Anne Helme, Dr. Stefan Gold /episode/index/show/realtalkms/id/37198960

Episode 408: Explaining Your MS to All Those Well-Meaning Family Members and Friends Who Get It Wrong with Kris Inman 06/23/2025

Episode 408: Explaining Your MS to All Those Well-Meaning Family Members and Friends Who Get It Wrong with Kris Inman Have you experienced those familiar feelings of frustration when the people closest to you don't seem to get your MS? Do you find yourself explaining and re-explaining things to well-meaning friends, co-workers, and even family members? Kris Inman's wife, Mariah, was diagnosed with MS in 2020, and, since then, Kris has been Mariah's care partner and an active member of the MS community. This week, Kris joins me to talk about overcoming the challenge of helping your friends and family understand what an MS diagnosis means and what living with MS is really like. We're also sharing research results that show that someone's age at the time they experience the first symptoms of MS can determine whether they experience a better physical or mental health-related quality of life. We'll tell you about a report issued jointly by the MS Society in the UK and the Work Foundation at Lancaster University that details specific challenges people with MS face in the workplace. We'll give you the details about the National MS Society's Fast Forward investment in Neurogenesis, a biotech company developing a proprietary stem cell therapy designed to treat progressive MS. And we'll share news about the Portable Neuromodulation Stimulator (PoNS), a device that's used in combination with physical therapy to reduce walking problems for people with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The frustration you might feel when some of the people closest to you don't really seem to get your MS. :22 Study results show that the age of MS onset can be predictive of physical and mental health-related quality of life 1:27 A report details challenges faced in the workplace by people living with MS in the UK 4:28 The MS Society's Fast Forward program has made an investment in Neurogenesis, a biotech company developing a proprietary cell therapy designed to treat progressive MS 8:00 Aetna Healthcare has become the third major private insurer to offer reimbursement for the PoNS device 11:00 Kris Inman discusses the finer points of being an MS care partner 14:17 Share this episode 29:13 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Act Now! Contact Your Senators About Medicaid and Health Coverage STUDY: Age of Multiple Sclerosis Symptom Onset Affects Mental and Physical Health-Related Quality of Life in Opposite Directions REPORT: No Compromises: Supporting People with MS to Thrive In and Out of Work Neurogenesis The Portable Neuromodulation Stimulator (PoNS) https://ponstherapy.com Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 408 Guest: Kris Inman /episode/index/show/realtalkms/id/37093045

Episode 407: Overcoming Sleep Issues When You're Living with MS with Dr. Katie Siengsukon 06/16/2025

Episode 407: Overcoming Sleep Issues When You're Living with MS with Dr. Katie Siengsukon Getting a good night's sleep is something that benefits everyone. And if you're someone who's living with MS, it's perhaps even more important. But research suggests that more than half the people living with MS experience poor sleep. Dr. Katie Siengsukon, the Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, returns to the podcast to discuss the importance of good sleep hygiene, along with steps you can take to improve the quality of your sleep. We're also explaining how changes in U.S. public policy will impact people with MS. We'll tell you about an algorithm developed at Duke University that can predict (with 80-90% accuracy!) whether someone's MS symptoms will worsen in the weeks ahead. We'll share study results that show MS accelerates biological aging among children and teens with MS. We'll explain why this finding can also be applied to adults with MS, and what it means. And we'll tell you about the biotech start-up that has succeeded at bringing the brains of people who have passed away back to life, and we'll explain why that can have a major impact on CNS disease research. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Sleep Hygiene and MS :22 How public policy changes in the U.S. will impact people with MS 1:18 What if you knew when an MS symptom was going to worsen? 6:18 Study results show MS accelerates biological aging in children 9:04 How re-animated human brains could accelerate CNS research (And which company is doing it!) 12:00 Dr. Katie Siengsukon discusses the importance of good sleep hygiene for people living with MS 15:37 Share this episode 33:32 Have you downloaded the free RealTalk MS app? 33:52 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Act Now! Contact Your Senators About Medicaid and Health Coverage STUDY: Performance of Machine Learning Models for Predicting High-Severity Symptoms in Multiple Sclerosis STUDY: Epigenetic Aging in Pediatric-Onset Multiple Sclerosis Bexorg https://bexorg.com Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 407 Guest: Dr. Katie Siengsukon /episode/index/show/realtalkms/id/37007725

Episode 406: From the 2025 Consortium of MS Centers Annual Meeting: Part Two with Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug 06/09/2025

Episode 406: From the 2025 Consortium of MS Centers Annual Meeting: Part Two with Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug Welcome to Part Two of our coverage of the Consortium of Multiple Sclerosis Centers annual meeting! In this week's episode, Dr. John DeLuca shares research that has identified an effective behavioral treatment for MS-related fatigue. Dr. Brian Sandroff discusses how MS rehabilitation has evolved and then answers some of your questions about exercise and MS. And Kristine Werner Ozug, a member of the RealTalk MS team and someone who lives with MS, shares her perspective on the sessions and presentations she attended at CMSC. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part 2 of our coverage from the 2025 Consortium of MS Centers Annual Meeting :22 Dr. John DeLuca shares his research, which has identified an effective behavioral treatment for MS-related fatigue 1:15 Dr. Brian Sandroff discusses how MS rehabilitation has evolved and answers some of your questions 8:34 Kristine Werner Ozug shares her perspective on the sessions and presentations she attended at CMSC 19:34 Share this episode 31:13 Have you downloaded the free RealTalk MS app? 31:34 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 406 Guests: Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug /episode/index/show/realtalkms/id/36870510

Episode 405: From the 2025 Consortium of MS Centers Annual Meeting -- Part One with Dr. Kathy Zackowski and Dr. Stephen Krieger 06/02/2025

Episode 405: From the 2025 Consortium of MS Centers Annual Meeting -- Part One with Dr. Kathy Zackowski and Dr. Stephen Krieger Last week in Phoenix, Arizona, the Consortium of Multiple Sclerosis Centers (CMSC) held its annual meeting, and we had a chance to talk with some of the top MS experts in the world. Welcome to Part One of our coverage! First, you'll hear Dr. Kathy Zackowski, the National MS Society's Associate Vice-President of Research, share her overview of the sessions and presentations that especially stood out to her. Then, you'll hear Dr. Stephen Krieger as he expands on one of the most interesting and provocative presentations at the conference. Dr. Krieger headed up a panel of experts that explained how the terms used to describe MS today (relapsing-remitting, secondary progressive, and primary progressive) are no longer adequate and then offered answers to the question, "If MS is one disease, what does that mean for clinical conversations?". We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the 2025 Consortium of MS Centers Annual Meeting :22 Dr. Kathy Zackowski shares an overview of the sessions and presentations that caught her eye 1:08 Dr. Stephen Krieger discusses seeing MS as one disease 17:11 Share this episode 31:58 Have you downloaded the free RealTalk MS app? 32:18 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 405 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger /episode/index/show/realtalkms/id/36802345

Episode 404: World MS Day 2025 with Meredith O'Brien 05/26/2025

Episode 404: World MS Day 2025 with Meredith O'Brien Every five minutes, someone somewhere in the world is diagnosed with MS. But getting that diagnosis can be challenging. And the evidence is clear that early intervention makes a difference. The sooner someone can begin a disease-modifying therapy, the better their outcome is going to be. World MS Day is May 30th, and this year, World MS Day is focused on eliminating the obstacles that get in the way of a timely and accurate diagnosis. I thought World MS Day would be the perfect time to invite Meredith O'Brien to join me to discuss her new book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients. We'll also explain how the drastic cuts to Medicaid funding that were approved by the U.S. House of Representatives will affect hundreds of thousands of people with MS, and how the additional changes made to the Affordable Care Act will leave millions of Americans without health insurance. We're sharing the results of a study that may have identified how B-cells infected by the Epstein-Barr Virus migrate into the brain. And we'll explain why that could be the activity that triggers MS. We'll tell you about a study that makes the case for treating pediatric MS with Ocrevus. And we'll share the results of a study that discovered an association between inflammation-causing molecules and frailty among people with relapsing forms of MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: World MS Day :22 U.S. House of Representatives Vote to Gut Healthcare in America 2:29 Get involved! Become an MS Activist today! 3:38 A research team has demonstrated how EBV-infected B-cells migrate to the brain 4:28 Researchers demonstrate the efficacy of Ocrevus in treating pediatric MS 7:13 Researchers show an association between frailty and an inflammatory molecule 8:57 Meredith O'Brien discusses her new book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients 11:05 Share this episode 24:51 Have you downloaded the free RealTalk MS app? 25:12 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: World MS Day Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients STUDY: Epstein-Barr Virus Induces Aberrant B Cell Migration and Diapedesis Via FAK-Dependent Chemotaxis Pathways STUDY: Ocrelizumab for Relapsing Pediatric Multiple Sclerosis STUDY: Association Between Frailty and Inflammatory Cytokines in Patients with Multiple Sclerosis: A Case-Control Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 404 Guest: Meredith O'Brien /episode/index/show/realtalkms/id/36695000

Episode 403: Moving Toward a Biologically Based Description of MS with Dr. Bruce Bebo, Dr. Daniel Ontaneda, and Kathy Smith 05/19/2025

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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 403 Guests: Dr. Bruce Bebo, Dr. Daniel Ontaneda, Kathy Smith /episode/index/show/realtalkms/id/36604690

Episode 402: The Importance of Asserting Your Personal Style When You're Living with MS with Jeri Zink Denz 05/12/2025

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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] STUDY: Broad Rim Lesions are a New Pathological and Imaging Biomarker for Rapid Disease Progression in Multiple Sclerosis International Progressive MS Alliance Hispanic/Latinx MS Experience Summit Info & Registration Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 402 Guest: Jeri Zink Denz /episode/index/show/realtalkms/id/36509875

Episode 401: The Things That (Should) Happen at Your Appointment With Your Neurologist with Dr. Barbara Giesser 05/05/2025

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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] National MS Society Commits $18.1 Million for Research (Projects Being Funded) International Progressive MS Alliance International Progressive MS Alliance Webcast: Putting People with MS at the Center of Research Participate in MS Research: The GEMS Study GEMS Study Contact: Juliana Oyegunle Email: Phone: (212) 305-2434 STUDY: Conformal Prediction Enables Disease Course Prediction And Allows Individualized Diagnostic Uncertainty in Multiple Sclerosis Multiple Sclerosis Progression Tracker Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 401 Guests: Dr. Barbara Giesser /episode/index/show/realtalkms/id/36415995

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 04/28/2025

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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 400 Guests: Dr. Tim Coetzee /episode/index/show/realtalkms/id/36301265

Episode 399: How Spirituality Can Make a Difference If You're Living with MS with Dr. Mana Ali Carter 04/21/2025

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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] Participate in a Sanofi Clinical Trial Register for a Virtual Event: Restore the MS Research Program Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 399 Guests: Dr. Mana Ali Carter /episode/index/show/realtalkms/id/36227475

Episode 398: How Breakthrough Discoveries in MS Research Will Impact MS Care with Dr. Amit Bar-Or 04/14/2025

Episode 398: How Breakthrough Discoveries in MS Research Will Impact MS Care with Dr. Amit Bar-Or 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] RealTalk MS Episode 310: The Face Laughs While The Brain Cries: The Education of a Doctor with Dr. Stephen Hauser RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh VIDEO: RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh VIDEO: RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Nonrelapsing Secondary Progressive MS with Dr. Robert Fox STUDY: Tolebrutinib Versus Teriflunomide in Relapsing Multiple Sclerosis STUDY: Tolebrutinib in Nonrelapsing Secondary Progressive Multiple Sclerosis Enabling New Insights from Old Scans By Repurposing Clinical MRI Archives for Multiple Sclerosis Research Fibroblast Technology Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 398 Guests: Dr. Amit Bar-Or /episode/index/show/realtalkms/id/36109755

Episode 397: Managing Grief and MS with Dr. Mary-Frances O'Connor 04/07/2025

Episode 397: Managing Grief and MS with Dr. Mary-Frances O'Connor 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] STUDY: Evaluation of Patient-Perceived Fatigue in Multiple Sclerosis Using the Finnish MS Registry STUDY: The Prevalence of Sexual Dysfunction and Its Contributors Among the Women with Multiple Sclerosis STUDY: The Prodromal Phase of Multiple Sclerosis: Evidence from Sickness Absence Patterns Before Disease Onset -- A Matched Cohort Study STUDY (PLAIN ENGLISH VERSION): The Prodromal Phase of Multiple Sclerosis: Evidence from Sickness Absence Patterns Before Disease Onset -- A Matched Cohort Study DOWNLOAD: Wellness Practices and Complementary Therapies in MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 397 Guests: Dr. Mary-Frances O'Connor /episode/index/show/realtalkms/id/36000360

Episode 396: The Importance of Cancer Screenings for People Living with MS With Dr. Ruth Ann Marrie 03/31/2025

Episode 396: The Importance of Cancer Screenings for People Living with MS With Dr. Ruth Ann Marrie 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] VIDEO: Tolebrutinib and Non-Relapsing Secondary Progressive MS with Dr. Robert Fox VIDEO: Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh VIDEO: RealTalk MS 2025 ACTRIMS Forum YouTube Playlist STUDY: Characterizing the Diversity of the Multiple Sclerosis Population in Canada: A Scoping Review STUDY (PLAIN ENGLISH VERSION): Characterizing the Diversity of the Multiple Sclerosis Population in Canada: A Scoping Review Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 396 Guests: Dr. Ruth Ann Marrie /episode/index/show/realtalkms/id/35918605

Episode 395: Things You Need to Know When You're Managing MS While You're Managing Menopause with Dr. Riley Bove 03/24/2025

Episode 395: Things You Need to Know When You're Managing MS While You're Managing Menopause with Dr. Riley Bove 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] RealTalk MS 2025 ACTRIMS Forum YouTube Playlist Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 395 Guests: Dr. Riley Bove /episode/index/show/realtalkms/id/35815425

Episode 394: Probably The Most Important Conversation About MS Advocacy That We Will Ever Have with Steffany Stern 03/17/2025

Episode 394: Probably The Most Important Conversation About MS Advocacy That We Will Ever Have with Steffany Stern 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at Become an MS Activist Web: Email: [email protected] RealTalk MS 2025 ACTRIMS Forum YouTube Playlist Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 394 Guests: Steffany Stern /episode/index/show/realtalkms/id/35673405

Bonus: An ACTRIMS Forum Conversation with Kristine Werner Ozug 03/14/2025

Bonus: An ACTRIMS Forum Conversation with Dr. Emanuelle Waubant 03/14/2025

Bonus: An ACTRIMS Forum Conversation with Dr. Mikael Simons 03/13/2025

Bonus: An ACTRIMS Conversation with Dr. Daniel Reich 03/13/2025

Bonus: An ACTRIMS Forum Conversation with Dr. Christina Azevedo 03/12/2025

Bonus: An ACTRIMS Forum Conversation with Dr. Peter Calabresi 03/12/2025

Bonus: An ACTRIMS Forum Conversation with Dr. Peter Calabresi Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum. Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine, focusing on the diagnosis and management of MS. He is the principal investigator on several clinical trials and oversees research projects focused on creating new anti-inflammatory and neuroprotective therapies for MS. At the ACTRIMS Forum, we talked with Dr. Calabresi about updates to the criteria used to diagnose MS, the importance and benefit of identifying biomarkers for MS, and what he sees in MS research today that has him excited. 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: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS on YouTube Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Bonus Episode Guest: Dr. Peter Calabresi /episode/index/show/realtalkms/id/35638530

Episode 393: MS Awareness Week with Case Jernigan and Suni Conway 03/10/2025

Episode 393: MS Awareness Week with Case Jernigan and Suni Conway It's MS Awareness Week, and the National MS Society is asking everyone in the MS community to tell MS exactly what they think of it. We're kicking off MS Awareness Week by introducing you to two difference-makers in the MS community who have each found their own way of talking back to MS. Case Jernigan is an experimental animator, narrative gamemaker, and educator. His short animated documentary, Noggin, is currently making the rounds of the film festival circuit, raising awareness of how Case reacted and responded to his early symptoms of MS. Suni Conway is an MS activist who has lived with MS for nearly 13 years. Suni uses her social media platform to raise awareness about MS diagnosis and treatment, and the need for healthcare reform. Be sure to follow RealTalk MS all week long, as we celebrate MS Awareness Week with bonus episodes featuring conversations with leading MS experts from the 2025 ACTRIMS Forum! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: It's MS Awareness Week! :22 Case Jernigan explains how his short animated documentary, Noggin, reflects the early parts of his MS journey 1:02 Suni Conway discusses the motivation behind her social media efforts and why advocacy is so important 12:05 Share this episode 35:52 Don't miss RealTalk MS bonus episodes all week long during MS Awareness Week! 36:12 Have you downloaded the free RealTalk MS app? 36:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS on YouTube VIDEO: Noggin Suni Conway on Instagram Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 393 Guests: Case Jernigan and Suni Conway /episode/index/show/realtalkms/id/35560760

An ACTRIMS Forum Conversation with Dr. Nara Michaelson 03/10/2025

An ACTRIMS Forum Conversation with Dr. Darin Okuda 03/10/2025

Episode 392: From the 2025 ACTRIMS Forum with Dr. Lilyana Amezcua and Dr. John Corboy 03/03/2025

Episode 392: From the 2025 ACTRIMS Forum with Dr. Lilyana Amezcua and Dr. John Corboy Last week, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents arrived in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum. I'm kicking off our coverage of this important conference by sharing two of the conversations I had at ACTRIMS 2025. First, I talked with Dr. Lilyana Amezcua about the Alliance for Research in Hispanic Multiple Sclerosis, and her just-published paper, The Impact of Person-Centered Social Determinants and Neighborhood Deprivation Associated with Disability in Hispanic People with Multiple Sclerosis. I also talked with Dr. John Corboy about aging and MS, and what he learned as the Principal Investigator of DISCO-MS, the largest clinical trial to focus on the question of whether it makes sense for someone over the age of 55 or 60 to discontinue their disease-modifying therapy. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the 2025 ACTRIMS Forum :22 Dr. Lilyana Amezcua discusses the Alliance For Research in Hispanic Multiple Sclerosis, and her paper focused on the impact of person-centered social determinants and neighborhood deprivation associated with disability in Hispanic people with multiple sclerosis 2:06 Dr. John Corboy discusses aging and MS, and what he learned as the Principal Investigator of DISCO-MS, the largest clinical trial to focus on the question of whether it makes sense for someone over the age of 55 or 60 to discontinue their disease-modifying therapy. 12:05 Share this episode 21:37 Next Week: Look for special episodes of the podcast with lots more interviews from the ACTRIMS Forum, featuring some of the leading MS experts in the world 21:57 Have you downloaded the free RealTalk MS app? 22:10 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS on YouTube RESEARCH PARTICIPATION OPPORTUNITY: The Global PROMS Initiative eHealth Survey Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 392 Guests: Dr. Lilyana Amezcua and Dr. John Corboy /episode/index/show/realtalkms/id/35518060

Episode 391: Choosing the Right Mobility Device with Dr. Evan Cohen 02/24/2025

Episode 391: Choosing the Right Mobility Device with Dr. Evan Cohen MS can limit your ability to get around and do the things you like to do. And when that happens, the right mobility device can be a game-changer when it comes to staying safe, staying active, and improving your quality of life. This week, Dr. Evan Cohen joins me to discuss how to know when it's time to consider a mobility device, and how to choose the right mobility device for you. We’re also presenting findings from two separate studies that shed significant light on how the gut microbiome interacts with the brain and how its composition varies among individuals with MS. We'll tell you what happened when a research team gave a multiple-choice "test" measuring MS expertise to neurologists and neurology residents and then gave the same test to the leading artificial intelligence platforms. And we'll share an opportunity for you to participate in MS research by taking the PROMS Initiative's eHealth survey. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Choosing the right mobility device :22 Differences in the gut microbiome of people with MS 1:28 Evidence shows the vagus nerve is the connection between the gut and the brain 3:53 Who won the "MS expertise" showdown between neurologists and AI? 6:18 Your opportunity to participate in MS research by taking the PROMS initiative survey 8:31 Dr. Evan Cohen shares everything you need to know about choosing a mobility device 10:27 Share this episode 30:57 Have you downloaded the free RealTalk MS app? 31:15 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS on YouTube STUDY: Alterations in Gut Microbiome-Host Relationships After Immune Perturbation in Patients with Multiple Sclerosis STUDY: Select Microbial Metabolites In the Small Intestinal Lumen Regulates Vagal Activity Via Receptor-Mediated Signaling STUDY: Artificial Intelligence Versus Neurologists: A Comparative Study on Multiple Sclerosis Expertise RESEARCH PARTICIPATION OPPORTUNITY: The Global PROMS Initiative eHealth Survey Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 391 Guest: Dr. Evan Cohen /episode/index/show/realtalkms/id/35391425

Special Episode: A Consensus Paper on Smoldering MS with Dr. Antonio Scalfari 02/20/2025

Episode 390: Managing MS Pain with Dr. Bianca Weinstock-Guttman 02/17/2025

Episode 390: Managing MS Pain with Dr. Bianca Weinstock-Guttman More than half of the people living with MS live with pain. And, too often, the distraction and discomfort of MS-related pain can stop you from fully engaging in every aspect of your life. Dr. Bianca Weinstock-Guttman joins me to discuss treatment options for managing MS pain. Dr. Weinstock-Guttman is a neurologist and professor of neurology at the Jacobs School of Medicine and Biomedical Sciences at the University of Buffalo, where she also serves as the Director of the Jacobs Multiple Sclerosis Center for Treatment and Research. We're also taking a moment to respond to all your questions and concerns about the state of healthcare policy and administration in the U.S. federal government. MS experts in Australia and New Zealand have released recommendations for MS care in those countries. We're sharing all the details. We'll tell you about the National MS Society's initiative designed to improve access to MS care in rural communities in the U.S. And we'll share the details of a study that shows that, together, obesity and smoking worsen MS symptoms faster. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Managing MS pain :22 Responding to your concerns about healthcare in the U.S. :57 Recommendations published for treating MS in Australia and New Zealand 7:16 National MS Society has launched an initiative designed to improve access to MS care in rural communities in the United States 9:09 Together, smoking and obesity worsen MS physical and cognitive symptoms faster 12:46 Dr. Bianca Weinstock-Guttman shares treatment options for managing MS pain 14:14 Share this episode 29:19 Have you downloaded the free RealTalk MS app? 29:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS on YouTube Consensus Recommendations on Multiple Sclerosis Management in Australia and New Zealand STUDY: Smoking and Obesity Interact to Adversely Affect Disease Progression and Cognitive Performance in Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 390 Guest: Dr. Bianca Weinstock-Guttman /episode/index/show/realtalkms/id/35291840

Episode 389: Overcoming the Stigma of MS with Denise Schnieders and Fox Rigney 02/10/2025

Episode 389: Overcoming the Stigma of MS with Denise Schnieders and Fox Rigney Living your best life with MS means learning to overcome the stigma of having a disability, successfully navigating social relationships, and learning how to ask for and accept help. Joining me to share their perspectives and their experiences in overcoming some of these social obstacles are Denise Schnieders, who was diagnosed with MS just about a year ago, and Fox Rigney, who's been living with MS since 2012. We're also applauding a forward-thinking caregiver leave benefit that's just been announced by EMD Serono. We're sharing results of a study that show MS lesions dynamically change over time and explains why those changes aren't apparent on MRI scans. We'll tell you about an AI-powered drug repurposing platform that has identified a potential treatment for MS. We'll also share an announcement from the CEO of Google's artificial intelligence company, DeepMind, that we will see pharmaceutical drugs developed by artificial intelligence in clinical trials by the end of this year. And we'll share the details of a Phase 2 clinical trial that you may qualify to participate in. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Overcoming the stigma of disability, navigating social situations, and how to ask for and receive help :22 EMD Serono implements caregiver leave benefit (And we're applauding!) 1:04 Imaging study reveals that T-2 lesions expand and contract "invisibly" 3:16 Has an AI drug repurposing platform discovered a new treatment for MS? 6:22 We will see pharmaceutical drugs developed by artificial intelligence in clinical trials this year 8:06 Your opportunity to participate in MS resesarch 10:54 Denise Schnieders and Fox Rigney discuss overcoming the stigma of MS 14:04 Share this episode 32:46 Have you downloaded the free RealTalk MS app? 33:06 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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: Phone: (310) 526-2283 And don't forget to join us in the ! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the or at RealTalk MS on YouTube Dynamic Expansion and Contraction of Multiple Sclerosis T-2 Weighted Hyperintense Lesions Are Present Below the Threshold of Visual Perception Contact Information for Obexelimab Phase 2 Clinical Trial Phone: (833) 269-4696 Email: [email protected] Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, , and subscribe to our newsletter at our website, . RealTalk MS Episode 389 Guests: Denise Schnieders and Fox Rigney /episode/index/show/realtalkms/id/35207255

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