Episode 409: From the International Progressive MS Alliance Digital Tools Workshop
RealTalk MS
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...
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Episode 408: Explaining Your MS to All Those Well-Meaning Family Members and Friends Who Get It Wrong with Kris Inman
RealTalk MS
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...
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Episode 407: Overcoming Sleep Issues When You're Living with MS with Dr. Katie Siengsukon
RealTalk MS
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...
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Episode 406: From the 2025 Consortium of MS Centers Annual Meeting: Part Two with Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug
RealTalk MS
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...
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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...
info_outlineEvery 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
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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
World MS Day
https://worldmsday.org
Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients
https://amazon.com/Uncomfortably-Numb-Anthology-Newly-Diagnosed-Patients/dp/1954332580/ref=sr_1_1
STUDY: Epstein-Barr Virus Induces Aberrant B Cell Migration and Diapedesis Via FAK-Dependent Chemotaxis Pathways
https://nature.com/articles/s41467-025-59813-z
STUDY: Ocrelizumab for Relapsing Pediatric Multiple Sclerosis
https://sciencedirect.com/science/article/abs/pii/s2211034825002810
STUDY: Association Between Frailty and Inflammatory Cytokines in Patients with Multiple Sclerosis: A Case-Control Study
https://sciencedirect.com/science/article/abs/pii/s1043466625000924
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 404
Guest: Meredith O'Brien