Episode 403: Moving Toward a Biologically Based Description of MS with Dr. Bruce Bebo, Dr. Daniel Ontaneda, and Kathy Smith
Release Date: 05/19/2025
Episode 405: From the 2025 Consortium of MS Centers Annual Meeting -- Part One with Dr. Kathy Zackowski and Dr. Stephen Krieger
RealTalk MS
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...
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Episode 404: World MS Day 2025 with Meredith O'Brien
RealTalk MS
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...
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Episode 403: Moving Toward a Biologically Based Description of MS with Dr. Bruce Bebo, Dr. Daniel Ontaneda, and Kathy Smith
RealTalk MS
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...
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Episode 402: The Importance of Asserting Your Personal Style When You're Living with MS with Jeri Zink Denz
RealTalk MS
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...
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Episode 401: The Things That (Should) Happen at Your Appointment With Your Neurologist with Dr. Barbara Giesser
RealTalk MS
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...
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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
RealTalk MS
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...
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Episode 399: How Spirituality Can Make a Difference If You're Living with MS with Dr. Mana Ali Carter
RealTalk MS
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...
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Episode 398: How Breakthrough Discoveries in MS Research Will Impact MS Care with Dr. Amit Bar-Or
RealTalk MS
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...
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Episode 397: Managing Grief and MS with Dr. Mary-Frances O'Connor
RealTalk MS
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...
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Episode 396: The Importance of Cancer Screenings for People Living with MS With Dr. Ruth Ann Marrie
RealTalk MS
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...
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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
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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
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RealTalk MS Episode 403
Guests: Dr. Bruce Bebo, Dr. Daniel Ontaneda, Kathy Smith