Explorez tous les épisodes du podcast RealTalk MS
| Titre | Date | Durée | |
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| Special Episode: Participating in MS Research with Chiquita Shepard-Knight and Earl Sneed | 20 Nov 2025 | 00:16:27 | |
Welcome to a RealTalk MS special series on MS clinical trials. This special series is made possible through a generous grant from Sanofi. In today's episode, you'll meet two participants from the TEAMS Study, a research study at the University of Illinois Chicago's UI Health, in conjunction with the University of Alabama Birmingham School of Public Health. TEAAMS is an acronym for Targeted Exercise for African-Americans with Multiple Sclerosis. And the study's research team analyzed the effects of a remotely delivered, racially tailored exercise training program among African Americans with MS living in low-income areas of the Southeastern United States, including Alabama, Georgia, Mississippi, North Carolina, South Carolina, Louisiana, Arkansas, and Tennessee. This is a part of the country that doesn't have many primary care or MS clinics that provide full exercise and rehabilitation services for patients with MS. The TEAMMS study consists of two 16-week exercise programs, completed 3 days per week at home. One exercise program combines aerobic and resistance training, while the other focuses on stretching and flexibility. Study participants were randomly assigned to one of the two programs, and all of the materials to complete each program, like yoga mats, resistance bands, and training manuals, were provided. And every study participant receives a $90 gift card in compensation for completing the program. The study's research team hypothesizes that completing the TEAAMS program would improve walking, reduce symptoms of fatigue, anxiety, depression, and pain, and enhance quality of life. This special episode of RealTalk MS is made possible by a generous grant from Sanofi. Sanofi has two ongoing Phase 3 clinical trials in MS studying Frexalimab, an investigational second-generation anti-CD40 ligand monoclonal antibody. If you are interested in learning more about these clinical trials, please visit SanofiStudies.com SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/ct3 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: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! | |||
| Episode 429: Caring for Your Partner with MS While Holding Down a Full-Time Job with Diana Grazio | 17 Nov 2025 | 00:30:35 | |
Being a caregiver for a loved one with MS isn't an easy job. And, while it may consume hours of your time, often, it's not your only job. Many caregivers are the only family members bringing in an income. So, in addition to their caregiving responsibilities, they may also be facing the responsibilities that go along with holding down a full-time job. This week, Diana Grazio joins me to discuss how she balances her roles and responsibilities as her partner's caregiver while holding down a full-time job. You have online opportunities tomorrow! Participate in the National MS Society's Hispanic LatinX MS Experience Summit, or catch the International Progressive MS Alliance's global webcast, How Existing Drugs Could Transform MS Treatment. We have all the info for you to register for either or both! If you purchase your health insurance through the ACA Healthcare Marketplace, you've probably already been notified that your premiums will skyrocket in 2026. MS Activist, Sarah Quezada, shares how those premium increases will affect her family. Roche has announced the outcomes of Phase 3 clinical trials for Fenebrutinib and Relapsing MS, and Primary Progressive MS. It's positive news, and we have the details! Could nanoparticles penetrate the blood-brain barrier and deliver anti-inflammatory medication directly to the central nervous system? University of Illinois researchers say yes! We're sharing the details. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: It's National Family Caregiver Month :22 The MS Care Partner Connection :34 The National MS Society is hosting the Hispanic LatinX MS Experience Summit TOMORROW! 2:20 The International Progressive MS Alliance Global Webcast is TOMORROW! 2:51 Sarah Quezada shares how astronomical increases in ACA health insurance premiums will affect her family 3:46 Roche announces outcomes for Phase 3 clinical trials for Fenebrutinib and Relapsing MS, and Primary Progressive MS 11:59 Could nanoparticles penetrate the blood-brain barrier and deliver anti-inflammatory medication directly to the central nervous system? 13:43 Diana Grazio discusses how she manages her role as a caregiver while holding down a full-time job 16:07 Share this episode 29:10 Next week's episode 29:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/429 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: jon@realtalkms.com 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 PARTICIPATE: Take the Shaping Tomorrow Together Online Survey SIGN UP: Become an MS Activist REGISTER: The Hispanic LatinX MS Experience Summit REGISTER: International Progressive MS Alliance Global Webcast VISIT: The MS Care Partner Connection STUDY: Nanoparticle-Boosted Myeloid-Derived Suppressor Cell Therapy for Immune Reprogramming in Multiple Sclerosis JOIN: The RealTalk MS Facebook Group REVIEW: Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 429 | |||
| Episode 421: Optimizing Your Brain Health with Nurse Practitioner Erin Wilkinson | 22 Sep 2025 | 00:42:26 | |
Happy birthday to us! RealTalk MS is 8 years old today! It's hard for me to believe that the podcast I launched in 2017, with the goal of one day reaching 300 listeners, today reaches thousands of people living with MS, their care partners, MS researchers, and clinicians in more than 100 countries. So, let me start this week's show notes with a profound thank you to each of you for being an important part of the RealTalk MS listener community. Your ongoing engagement is a constant reminder that our podcast is a two-way conversation. And I'm looking forward to continuing the conversation until we can talk about MS in the past tense. MS can affect memory, attention, and processing speed. But proactive strategies can help preserve your cognitive function and quality of life. Erin Wilkinson, a nurse practitioner in the Multiple Sclerosis Department of the Cleveland Clinic Lou Ruvo Center for Brain Health, is joining me to help us better understand the relationship between MS and brain health and to share strategies for preserving and even improving brain health. You'll also meet Jan Bonville, a consultant, speaker, writer, and advocate for inclusive travel and patient empowerment. Jan has lived with MS for twenty years, and our conversation focused on resilience, empowerment, and self-advocacy. As you will hear, these are things that Jan lives every day. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Happy birthday to us and greetings from ECTRIMS! :22 MS advocate Jan Bonville discusses resilience, empowerment, and self-advocacy 4:40 Nurse Practitioner Erin Wilkinson shares strategies for optimizing your brain health 23:03 Share this episode 41:01 Next week's episode 41:21 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/421 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: jon@realtalkms.com 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 PARTICIPATE: Take the Shaping Tomorrow Together Survey REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA SIGN UP: Become an MS Activist LISTEN: RealTalk MS Episode 416: The Updated McDonald Diagnostic Criteria for MS with Dr. Andrew Solomon VIDEO: Dr. Robert Fox explains the results of the Phase 3 clinical trial for Tolebrutinib and Non-relapsing secondary progressive MS JOIN: The RealTalk MS Facebook Group DOWNLOAD: The RealTalk MS App for iOS Devices DOWNLOAD: The RealTalk MS App for Android Devices REVIEW: Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 421 | |||
| Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) | 29 Apr 2024 | 00:29:34 | |
As people age, their immune systems change. Their level of physical and cognitive reserve changes. They often develop additional health issues. They frequently experience changes in their mobility. And these are people who aren't living with MS. When you combine the health issues related to aging with the health issues that are related to MS, you end up with a sum that is exponentially larger than its parts. And when you consider that there are more people living with MS who are over the age of 65 than there are people living with MS under the age of 45, it's not surprising that the subject of aging with MS has become an area of increasing interest among researchers, clinicians, and people affected by MS. That's why, last week, the International Advisory Committee for Clinical Trials in Multiple Sclerosis invited a select group of 100 MS researchers and clinical specialists from around the world to participate in a three-day deep dive exploring aging and MS. In Part 1 of our coverage, we're taking you inside this meeting, where you'll hear from some of the expert presenters who were in attendance. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the Aging & MS Workshop :22 Dr. Tim Coetzee shares some of the issues the meeting presenters and attendees will be focusing on 1:35 Dr. Jennifer Graves discusses the difference between chronological aging and biological aging, and how that difference impacts MS 9:29 Dr. Wallace Brownless talks about some of the challenges related to diagnosing and treating late-onset MS 14:33 Dr. Amit Bar-Or explains how the immune system changes over time, and how those changes can affect living with MS 21:36 Share this episode 28:04 Have you downloaded the free RealTalk MS app? 28:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/348 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 348
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| Episode 347: Vitamin D and MS with Dr. Ellen Mowry | 22 Apr 2024 | 00:33:38 | |
Lower levels of Vitamin D have been associated with a higher risk of developing MS and an increase in MS disease activity. And, for years, scientists have worked to better understand the relationship between Vitamin D and MS. Joining me to talk about the role that Vitamin D plays in MS is Dr. Ellen Mowry. Dr. Mowry is a Professor of Neurology and Epidemiology, and the Co-Director of the Multiple Sclerosis Precision Medicine Center of Excellence at Johns Hopkins University. Dr. Mowry is also one of the leading experts on Vitamin D and MS in the world. The National MS Society's virtual MS Activist Rally is happening in just two days, on April 25th! We're sharing registration details. We'll tell you about a scientific breakthrough that has identified a specific autoantibody signature that can accurately predict MS years before someone experiences any MS symptoms. We're sharing details of a clinical trial that focused on the efficacy of Ocrevus in treating Black and Hispanic people living with MS. We'll also share the details of this trial's novel design that can serve as a blueprint for successfully engaging members of minority communities in future clinical research. We'll explain one reason why we aren't hearing as much news about the benefits of using cannabis to treat MS symptoms, and why cannabis use may actually be creating a new set of problems for people living with MS. And we're sharing study results that show that an artificial intelligence program may have a better bedside manner than your neurologist. We have a lot to talk about! Are you ready for RealTalk MS??! Don't miss it! The MS Activist Rally is happening on 4/25! :22 This Week: The relationship between Vitamin D and MS 2:50 Autoantibody signature predicts MS years before symtoms develop 3:45 Clinical trial results show that Black and Hispanic people with MS respond well to Ocrevus 7:58 Is cannabis working for people with MS? 11:13 Study results show that ChatGPT answers questions about MS with more empathy than neurologists 14:28 Dr. Ellen Mowry updates us on what the latest research is revealing about Vitamin D and MS 18:31 Share this episode 32:06 Have you downloaded the free RealTalk MS app? 32:26 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/347 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: jon@realtalkms.com 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 REGISTER for the MS Activist Rally STUDY: An Autoantibody Signature Predictive of Multiple Sclerosis RealTalk MS Episode 346: Why Members of Minority Communities May Face a More Severe MS Disease Course with Dr. Annette Langer-Gould STUDY: ChatGPT vs Neurologists: A Cross-Sectional Study Investigating Preference, Satisfaction Ratings, and Perceived Empathy in Responses Among People Living with 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 347
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| Episode 346: Why Members of Minority Communities May Face A More Severe MS Disease Course with Dr. Annette Langer-Gould | 15 Apr 2024 | 00:33:04 | |
In past episodes of this podcast, we've discussed disparities in healthcare. We've looked at evidence that shows members of historically underserved communities who are living with MS can face a more severe disease course. We've looked at studies that have shown some members of these racial and ethnic minority groups don't do as well on disease-modifying therapies, and their MS progresses more quickly. It's often been speculated that the reason behind these disparities is based on genetics -- that members of minority communities who are living with MS are genetically predisposed to experiencing a more severe disease course. My guest in this episode is Dr. Annette Langer-Gould, and Dr. Langer-Gould comes armed with evidence that points to a completely different set of answers for the cause of racial and ethnic disparities in MS disease severity and progression. We're also sharing registration details for the National MS Society's MS Activist Rally on April 25th! We'll tell you about an inverse vaccine that prevents the mouse model of MS (and we'll explain what an inverse vaccine is!) You'll find out where you can find the just-released video progress report from the International Progressive MS Alliance. We'll explain just-published results from an analysis that shows why anti-diabetic and weight-loss drugs like Ozempic, Jardiance, and Trulicity may be repurposed as MS therapies. And we're sharing study results with both good news and not so great news when it comes to being diagnosed and treated for MS in a timely manner. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're exploring the reason that members of underserved minority populations who are living with MS often experience a more severe disease course :22 The MS Activist Rally is happening on 4/25! 1:28 An inverse vaccine prevents the mouse model of MS 3:49 The International Progressive MS Alliance has released their 2024 progress report 6:13 Can weight-loss drugs be repurposed as MS therapies? 7:33 A study shows that getting diagnosed and treated for MS is dependent upon your country's healthcare system 10:26 Dr. Annette Langer-Gould has a sobering answer as to why some members of minority communities who are living with MS experience a more severe disease course 14:48 Share this episode 31:31 Have you downloaded the free RealTalk MS app? 31:51 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/346 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: jon@realtalkms.com 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 REGISTER for the MS Activist Rally VIDEO: International Progressive MS Alliance 2024 Progress Report STUDY: Exploring the Association Between Weight Loss-Inducing Medications and Multiple Sclerosis: Insights from the FDA Adverse Event Reporting System Database STUDY: Disease-Modifying Therapy Initiation Patterns in Multiple Sclerosis in Three Large Populations 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 346
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| Episode 345: A Deep Dive into Women's Health and MS with Dr. Rhonda Voskuhl and Dr. Anna Shah | 08 Apr 2024 | 00:34:11 | |
MS affects women almost 3 times more frequently than it affects men, which makes understanding how MS may impact other women's health issues a priority. Dr. Rhonda Voskuhl and Dr. Anna Shah join me as we take a deep dive into both the research and clinical side of how MS affects women's health and how those other health issues may affect MS. Dr. Shah is an Associate Professor of Neurology and Associate Clinic Director of Outpatient Neurology at the University of Colorado School of Medicine. Dr. Voskuhl is the Director of the UCLA Multiple Sclerosis Program, she holds the Jack H. Skirball Chair in MS, she's a Professor in the UCLA Department of Neurology, and Dr. Voskuhl also serves as Faculty Neurologist of the UCLA Comprehensive Menopause Care Program. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're taking a deep dive into women's health and MS :22 Dr. Rhonda Voskuhl named the recipient of the 2024 John Dystel Prize for Multiple Sclerosis Research :52 Dr. Rhonda Voskuhl discusses her research looking at why MS affects men and women differently 2:32 Dr. Anna Shah discusses how MS can affect women's health issues and how those health issues can affect MS 13:21 Share this episode 32:40 Have you downloaded the free RealTalk MS app? 33:00 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/345 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 345
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| Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini | 01 Apr 2024 | 00:33:42 | |
If you're a regular listener, you've probably heard me say that the pace of scientific discovery is moving faster than ever before. Or you may have heard the National MS Society remind us that we've seen as many advances in MS research in the past 5 years as we have in the previous 70 years. Have you ever wondered why? A major driver of this acceleration of discovery is the technology that allows scientists to analyze massive amounts of information looking for relationships or identifying characteristics that, without this technology, would be impossible to see. This category of tech is commonly referred to as big data. And we're closer than we've ever been to understanding the biological complexities of multiple sclerosis because we've learned to harness the computing power that allows scientists to discover those very small needles among those very large haystacks. My guest in this episode is Professor Sergio Baranzini. Professor Baranzini is this year's recipient of the Barancik Prize for Innovation in MS Research and he's someone who has successfully leveraged big data to drive big, game-changing discoveries in multiple sclerosis. We'll also share some good news about MS research funding from the federal government. We'll review newly published results from a study that has identified 3 subtypes of MS, each with a different disease trajectory. We'll share evidence from a study that focused on whether people over the age of 50 with nonactive MS should discontinue their disease-modifying therapy. And we'll tell you about the Canadian regulatory approval of a software-based medical device that can monitor MS disease activity by tracking eye movement -- all from an iPad that people with MS can use at home. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're saluting Professor Sergio Baranzini, this year's winner of the Barancik Prize :22 Congress provides $20 million in FY2024 funding for the MS Research Program 1:57 A German research team has identified 3 subtypes of MS based on their unique immune cell signature found in a blood sample 4:10 A French research team focused their study on whether people over the age of 50 with nonactive MS should discontinue their DMT. Here's what they discovered 8:58 Health Canada has approved ETNA-MS. A software-based medical device that can monitor MS disease activity by tracking eye movement 12:48 Professor Sergio Baranzini discusses how big data has fundamentally changed scientific research, and how he's using it to find cures for MS 16:44 Share this episode 32:03 Have you downloaded the free RealTalk MS app? 32:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/344 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: jon@realtalkms.com 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 REGISTER for the MS Activist Rally STUDY: Multiple Sclerosis Endophenotypes Identified by High-Dimensional Blood Signatures are Associated with Distinct Disease Trajectories STUDY: High-Efficacy Therapy Discontinuation vs Continuation in Patients 50 Years and Older with Nonactive 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 344
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| Episode 343: Progressive MS Day with Kevin Reid | 25 Mar 2024 | 00:29:41 | |
March 28th is Progressive MS Day, a day that offers an opportunity for people affected by MS, patient advocates, healthcare providers, governments, and industry to share stories online and show their support for people living with progressive forms of MS. My wife, Jeanne, lived with progressive MS for 23 years, so this day holds a special significance for me. Joining me to talk about what Progressive MS Day is all about is my friend, Kevin Reid. Kevin was diagnosed with MS in 2002 and, for the past 10 years, he's been on a mission to crush MS. As MS Awareness Month draws to a close, we're sharing a series of short videos featuring conversations I had with MS experts at the ECTRIMS congress. What makes this video series unique is that iConquer MS invited people living with MS to watch these videos. Then, I interviewed them to get their perspective on the topics the experts were discussing. It's the first time you'll not only hear from the experts, but you'll also get the thoughts and reactions of people who are living with MS. We'll tell you about the neurostimulator that was just designated as a Breakthrough Device for promoting myelin repair. We'll share the details of a newly announced Phase 2 clinical trial for a T-cell therapy for MS. You'll hear about the study that identified a biomarker that reliably predicted the likelihood of future disease activity in people with MS. And we'll tell you where you can catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: March 28th is Progressive MS Day :22 Have you seen the series of short videos featuring my conversations with MS experts at ECTRIMS along with the thoughts and reactions from people living with MS? 1:00 Catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars 1:57 FDA designates neurostimulator as a breakthrough device for promoting myelin repair in people living with relapsing-remitting MS 2:46 Biotech company PolTREG announces Phase 2 clinical trials to test their Tregs treatment for MS 5:28 Study shows neurofilament light chain levels can reliably predict future disease activity 7:10 Kevin Reid discusses the importance of Progressive MS Day and gives us a preview of CRUSH MS 10:35 Share this episode 28:09 Have you downloaded the free RealTalk MS app? 28:29 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/343 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: jon@realtalkms.com 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 VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey VIDEO: ACTRIMS Forum 2024 Webcast Replays STUDY: Prognostic Value of Serum Neurofilament Light Chain for Disease Activity and Worsening in Patients with Relapsing Remitting Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 343 | |||
| Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed | 18 Mar 2024 | 00:28:50 | |
We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study. Chiquita and Earl will discuss how they discovered the TEAAMS study, what motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them. We'll also take you to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference. It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS. And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar :22 This Week: The patient perspective on participating in an MS research study 1:38 Live! From the Natinal MS Society's Public Policy Conference 2:28 People with MS weign in on the impact of several ECTRIMS presentations 10:17 Catch the video replay of the International Progressive MS Alliance webcast 11:35 Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study 12:11 Share this episode 27:18 Have you downloaded the free RealTalk MS app? 27:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/342 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: jon@realtalkms.com 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 REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS The TEAAMS 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 342 | |||
| Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha | 11 Mar 2024 | 00:31:17 | |
Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue. Dr. Shiv Saidha joins me as we take a deep dive into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're taking a deep dive into managing MS-related vision issues :22 Doctor Shiv Saidha discusses how to best manage MS-related vision issues 1:17 Share this episode 29:44 Have you downloaded the free RealTalk MS app? 30:05 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/341 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 341 | |||
| Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham | 04 Mar 2024 | 00:31:18 | |
When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy. Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially life-changing rehabilitation tools for people living with MS. Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field. Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're taking a deep dive into next-generation tools for MS rehabilitation :22 Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation 1:44 Share this episode 29:48 Have you downloaded the free RealTalk MS app? 30:08 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/340 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 340 | |||
| Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson | 26 Feb 2024 | 00:29:47 | |
A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity, or PIRA, means and how it may or may not impact your MS journey. And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS. Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS. We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy. We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce. We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process. And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: What is "Progression Independent of Relapse Activity"? 1:31 STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS 3:02 STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS 6:49 An AI tool has been developed that can predict an individual's MS disease course 9:17 SURVEY: Some people have mixed feelings about using AI in diagnosing illness 11:47 STUDY: Caffeine is shown to improve balance and mobility in people with MS 14:38 Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome 16:47 Share this episode 28:15 Have you downloaded the free RealTalk MS app? 28:35 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/339 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: jon@realtalkms.com 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 STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 339 | |||
| Special Episode: Dr. Aaron Boster Explains MS Clinical Trials | 17 Sep 2025 | 00:33:37 | |
You're living with MS, and maybe you're thinking about participating in an MS clinical trial. But how do they work? Are they safe? What's the difference between Phase 1, 2, and 3 trials? What are the real patient risks and benefits of participating in a clinical trial? In this special episode of RealTalk MS, we're getting answers to those questions and so much more from my guest, Dr. Aaron Boster. Dr. Boster is the founder of the Boster Center for Multiple Sclerosis in Columbus, Ohio, where he brings over 20 years of experience as an MS clinician. Dr. Boster has also participated in more than 65 clinical trials. This special episode of RealTalk MS has been made possible through a generous grant from Sanofi. Sanofi has two ongoing Phase 3 clinical trials in MS studying Frexalimab, an investigational second-generation anti-CD40 ligand monoclonal antibody. If you are interested in learning more about these clinical trials, please visit SanofiStudies.com SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/ct1 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: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! | |||
| Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern | 19 Feb 2024 | 00:33:21 | |
You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important. The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern. We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression. We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance. And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing. We have a lot to talk about! Are you ready for RealTalk MS??! Jeanne's Story :22 This Week: Inside MS advocacy and this year's Public Policy Conference 8:36 Experts publish an update on progressive MS research, identify lessons learned, and call out the remaining challenges 9:35 The International Progressive MS Alliance hosts a global webcast this Thursday 17:22 MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference 18:54 Share this episode 31:51 Have you downloaded the free RealTalk MS app? 32:10 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/338 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: jon@realtalkms.com 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 National MS Society: Become an MS Activist PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 338 | |||
| Episode 337: Aging With MS with Dr. Aaron Boster | 12 Feb 2024 | 00:39:44 | |
We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions. Is there a need to stay on disease-modifying therapy after the age of 60? This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Aging with MS :22 Dr. Aaron Boster tackles the multifaceted subject of aging with MS 1:59 Share this episode 38:09 Have you downloaded the free RealTalk MS app? 38:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/337 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 337 | |||
| Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq. | 05 Feb 2024 | 00:39:32 | |
When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead. This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally, wrote the book for the National MS Society on applying for SSDI benefits. We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in. We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!) We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA. We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy. And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How to apply for Social Security Disability Insurance benefits :22 This year's recipient of the Barancik Prize for Innovation in MS research 1:58 Real progress reported in efforts to penetrate the blood brain barrier 7:17 FDA gives Fast-Track designation to CAR-T cell therapy for MS 10:03 STUDY: Having a university education makes it more likely that someone with MS will be on a DMT 13:04 STUDY: Geographic proximity to MS care in the U.S. is far from equal 15:04 Disability law expert Jamie Hall discusses how to apply for SSDI benefits 19:29 Share this episode 38:01 Have you downloaded the free RealTalk MS app? 38:21 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/336 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: jon@realtalkms.com 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 Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 336 | |||
| Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster | 29 Jan 2024 | 00:32:08 | |
How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're employed, you absolutely need to know and understand your rights in the workplace. MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace. I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???) I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them. We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!) We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community) Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost. We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research. And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Successfully navigating the health insurance maze :22 Why the MS Navigators are the gold standard when it comes to support for people affected by MS :56 Everything you need to know about the RealTalk MS show notes 2:12 STUDY: A wheat-free diet may reduce MS severity 5:28 Experts call for a new framework for describing Parkinson's Disease 8:31 A test to determine who is at high risk for contracting PML is available...at no cost 11:36 STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish 14:08 The Spanish Society of Neurology has updated its guidelines for treating MS 15:42 MS Navigator Christina Forster discusses your rights in the workplace 19:35 Share this episode 30:37 Have you downloaded the free RealTalk MS app? 30:57 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/335 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: jon@realtalkms.com 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 Contact an MS Navigator STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies No Cost PML Risk Genetic Test STUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 335 | |||
| Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek | 22 Jan 2024 | 00:28:17 | |
Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment. MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises." We're also sharing study results that can help you get the most benefit from your everyday physical activity. We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation. We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS. We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies. And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Successfully navigating the health insurance maze :22 STUDY: The benefit of physical activity lies in step rate and not step count 1:42 Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation 3:47 STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS 5:41 You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company 8:50 Generics for Tecfidera have been delayed at least one year in Europe 10:47 MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs 12:03 Share this episode 26:46 Have you downloaded the free RealTalk MS app? 27:07 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/334 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: jon@realtalkms.com 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 STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume Myrobalan Therapeutics STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis The Mark Cuban Cost Plus Drug Company 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 334 | |||
| Episode 333: Improving Communication Between You and Your Neurologist with Dr. Luis Manrique-Trujillo | 15 Jan 2024 | 00:35:53 | |
You've just had your appointment with your neurologist or MS Specialist and you're on your way home, feeling like you weren't heard. Maybe there wasn't sufficient time. Or it might feel like your opinion simply isn't valued. Your frustration could even be the result of language issues and cultural barriers that make communication difficult. Whatever the reason, it doesn't have to be this way. Dr. Luis Manrique-Trujillo joins me this week to share tips and strategies that will improve the quality of communication between you and every member of your MS care team. Dr. Manrique-Trujillo is a neurologist specializing in neuroimmunology and multiple sclerosis at MedStar Georgetown University Hospital in Washington, D.C. We're also sharing some fascinating research that traces the gene variants that increase someone's risk of developing MS all the way back to the Bronze Age. We'll tell you about a small study that may explain how the Epstein-Barr Virus triggers MS. We'll tell you about a class-action lawsuit that accuses Pharmacy Benefit Managers of illegal collusion and price-fixing. (And we'll explain why this lawsuit could be a huge step toward lowering the cost of your prescription medications) And we're sharing our plans for RealTalk MS in 2024. We have a lot to talk about! Are you ready for RealTalk MS??! My New Year's Resolutions for RealTalk MS :22 This Week: Improving communication between you and your neurologist 4:59 STUDY: Ancient DNA reveals how MS risk genes arose and spread across Europe 5:59 STUDY: EBV-specific T-cells may play a key role in developing MS 9:36 An important class-action lawsuit has been filed against Pharmacy Benefit Mangers 11:18 Dr. Luis Manrique-Trujillo shares strategies for improving communication between you and your neurologist 15:41 Share this episode 34:19 Have you downloaded the free RealTalk MS app? 34:40 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/333 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: jon@realtalkms.com 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 STUDY: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 333 | |||
| Episode 332: Managing the Cost of Generic, Biosimilar, and Other Prescription Medications with Robin LaRue | 08 Jan 2024 | 00:29:21 | |
If you remember your Economics 101 class, the introduction of generic and biosimilar drugs should cause prices to drop. Yet, when it comes to MS disease-modifying therapies that isn't always the case. MS Navigator Robin LaRue joins me this week to discuss how to manage the sometimes crazy costs of MS prescription medications. We're also sharing results from a study that show there is absolutely no association between consuming dairy and gluten products and MS disease activity. We'll tell you about two different studies that suggest that non-pharmaceutical interventions may be effective in lessening MS fatigue. We're sharing results from a trial that reveal an innovative approach to supporting MS caregivers. And we'll tell you about 4.6 million euro in new funding from the International Progressive MS Alliance that will go toward research focused on developing new treatments for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Managing the cost of MS medications :22 STUDY: No association between consuming dairy and gluten products and MS disease activity 1:42 STUDY: SMS-messaging is shown to improve MS-related fatigue 4:50 STUDY: Talk therapy is shown to improve MS-related fatigue 8:36 STUDY: Remote coaching and online information improves the well-being of MS caregivers 10:43 International Progressive MS Alliance announces new research funding 13:32 MS Navigator Robin LaRue discusses how to manage the cost of MS prescription medications 15:57 Share this episode 27:48 Have you downloaded the free RealTalk MS app? 28:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/332 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: jon@realtalkms.com 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 STUDY: Dairy and Gluten in Disease Activity in Multiple Sclerosis STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study STUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial International Progressive MS Alliance 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 332 | |||
| Episode 331: Becoming a Donor to the National MS Brain Bank with Dr. Claire Riley | 01 Jan 2024 | 00:30:14 | |
This is the week that a lot of us make resolutions for the coming year. And I'm hoping that after you hear my conversation with Dr. Claire Riley, many of you will resolve to become donors to the National Multiple Sclerosis Brain Bank. Resolving to donate brain and tissue to the National MS Brain Bank is a new year's resolution that goes far beyond the standard eat better and exercise more promises that so many of us make to ourselves every year. It's deeply meaningful, profoundly personal, and, as Dr. Riley describes it, it's a heroic step in choosing to play an important role in curing MS. We're also sharing the details about a partial hold that the FDA has placed on another clinical trial for an experimental MS disease-modifying therapy. And we'll share some potentially disturbing news about how artificial intelligence is being leveraged to deny patients medically necessary care. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Becoming a donor to the National MS Brain Bank :23 FDA puts a partial hold on Phase 3 clinical trial investigating Fenebrutinib 1:23 Are health insurers using AI for all the wrong reasons? 4:49 Dr. Claire Riley discusses why you should consider being a donor to the National MS Brain Bank 8:09 Share this episode 28:40 Have you downloaded the free RealTalk MS app? 29:01 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/331 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: jon@realtalkms.com 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 The National Multiple Sclerosis Brain Bank 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 331 | |||
| Episode 330: Revisiting How the Proposed Framework for Researching, Diagnosing, and Treating MS Will Affect You with Prof. Tanja Kuhlmann and Dr. Tim Coetzee | 25 Dec 2023 | 00:37:57 | |
This week, I'm revisiting the proposal from the International Advisory Committee on Clinical Trials in MS that recommended adopting a new framework that leverages what scientists are continuing to learn about MS and redefines how we talk about MS, how we research MS, how we diagnose MS, and how we treat MS. This proposed framework holds the promise of taking MS care to the next level. This new framework was first proposed in a paper published in November 2022, and last January, I spoke with the lead author of that paper, Professor Tanja Kuhlmann. We discussed why an international panel of distinguished MS experts was recommending changing something that has been in place for decades. The following week, I reached out to the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, and we talked about how this new framework for describing MS would impact people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Revisiting the proposed framework for describing MS :22 Prof. Tanja Kuhlmann discusses why this new framework is necessary 1:46 Dr. Tim Coetzee talks about how this new framework will impact people living with MS 14:49 Share this episode 36:25 Have you downloaded the free RealTalk MS app? 36:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/330 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 330 | |||
| Episode 329: Revisiting the Pathways To Cures Global Summit | 18 Dec 2023 | 00:48:54 | |
The holiday season provides me with an opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes of the year to revisit the most compelling,and important conversations that I've had over the past year. This week, I'm revisiting the conversations I had at the Pathways To Cures Global Summit that took place in New York last May. The National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years. I had the opportunity to speak with several of the top MS experts in the world at this meeting and, collectively, these are the conversations that have resonated with me all year long. We have a lot to talk about! Are you ready for RealTalk MS??! Happy Holidays! :22 This Week: Revisiting the Pathways to Cures Global Summit :54 My conversation with a distinguished group of CEOs representing 5 major MS Societies 2:55 Dr. Tim Coetzee discusses the current state of MS care and the work ahead 9:11 Kathy Smith shares her perspective on the Pathways to Cures Global Summit 13:54 Dr. Anne-Katrin Probstel talks about stopping MS 20:26 Dr. Naila Makhami discusses detecting MS early 31:36 Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways to Cures global research initiative 35:53 Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways to Cures initiative doesn't leave anyone behind 41:11 Share this episode 47:21 Have you downloaded the free RealTalk MS app? 47:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/329 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: jon@realtalkms.com 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 Learn more about Pathways To Cures 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 329 | |||
| Episode 420: A DIY Kit for Improving Your MS Journey with Julie Polisena | 15 Sep 2025 | 00:34:51 | |
Disease-modifying therapies are the cornerstone of MS treatment, but they're not the only piece of the puzzle. Beyond prescription medications, self-care that includes making healthy lifestyle choices can significantly improve your quality of life with MS. Julie Polisena knows this firsthand. Julie lives with MS, and in a recent blog post, she shared a comprehensive list of the lifestyle changes that have improved her quality of life with MS. Julie joins us today to discuss some of the most impactful changes you can make to start your own journey toward better health and wellness.
We're also diving into the science behind some of the most talked-about diets for MS. We're breaking down the research on the Mediterranean diet, the Keto diet, the Wahls Diet, the Swank Diet, a gluten-free diet, and intermittent fasting, giving you an overview of the studies that have measured their impact on MS. We're discussing the latest developments in the ongoing scrutiny of pharmacy benefit managers (PBMs). There's significant pending legal action and a congressional investigation targeting PBMs, the powerful and secretive middlemen in the prescription drug supply chain. And we'll tell you how they've profited at the expense of millions of people with chronic illnesses, including people living with MS. We'll tell you about a clinical trial that's testing an injectable formulation of Briumvi. You'll hear about a promising new strategy for myelin repair. And we'll remind you about a warning from the FDA and Health Canada about glatiramer acetate (Copaxone). We have a lot to talk about! Are you ready for RealTalk MS??! This Week: A DIY approach to improving your MS journey :22 A roundup of studies that focused on popular diets for people with MS 1:53 Congress and the FTC have pharmacy benefit managers in their sites 7:32 TG Therapeutics is testing an injectable form of Briumvi 9:32 A research team has developed a novel remyelination strategy 11:03 A warning about glatiramer acetate has been issued 14:08 Julie Polisena discusses lifestyle changes that can make a difference in your quality of life 16:58 Share this episode 33:24 Next week's episode 33:43 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/420 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: jon@realtalkms.com 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 PARTICIPATE: Take the Shaping Tomorrow Together Survey REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA SIGN UP: Become an MS Activist READ: Small Changes, Big Impact: Managing My MS Through Lifestyle Changes STUDY: The Role of Nutrition and Physical Activity in Modulating Disease Progression and Quality of Life in Multiple Sclerosis STUDY: Transient Gene Melting Governs the Timing of Oligodendrocyte Maturation REVIEW: Copaxone, Glatopa (Glatiramer Acetate) FDA Drug Safety Communication JOIN: The RealTalk MS Facebook Group DOWNLOAD: The RealTalk MS App for iOS Devices DOWNLOAD: The RealTalk MS App for Android Devices REVIEW: Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 420 | |||
| Bonus Episode -- MS21: Patient Empowerment: Invisible Symptoms of MS with Professor Klaus Schmierer and Jane Shanahan | 13 Dec 2023 | 00:34:03 | |
This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada. In this special episode of RealTalk MS, we're exploring what the invisible symptoms of MS are, and how to best empower people living with MS to talk about them with their healthcare team. Professor Klaus Schmierer is a Professor of Neurology at the Blizard Institute, Queen Mary's Univerrsity of London and a Consultant Neurologist at the Royal London Hospital, which is part of Barts Health NHS Trust in the U.K. Professor Schmierer has a keen interest in MS and focuses his research on the underlying mechanisms of the disease and how to improve diagnosis with imaging tools, such as MRI. Jane Shanahan is a patient advocate who was diagnosed with MS in 2016. Jane lives with her husband and two children. She has developed an interest in better understanding MS, as well as educating her family, friends, colleagues, and others about the disease. Both Professor Schmierer and Jane are active members of the MS in the 21st Century initiative. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com. | |||
| Episode 328: Cognitive Rehabilitation and MS with Dr. Nancy Chiaravalloti | 11 Dec 2023 | 00:33:19 | |
Cognitive dysfunction is a common symptom of multiple sclerosis, affecting more than half of the people living with MS. While cognitive issues like changes in memory, difficulty maintaining attention, slower information processing speed and executive function may not be among the most disabling symptoms of MS, they may be among the most disconcerting symptoms. Whether it's your short-term memory, the ability to find your way to a familiar destination that you've gone to hundreds of times, or your ability to follow conversations with friends or business colleagues, these are the kinds of real-world situations that can bring someone to a hard stop, recognizing that they're changing in profound ways that aren't outwardly apparent. And that's a scary feeling. Fortunately, researchers are making real progress in developing ways for people living with MS to improve their cognition. This week, Dr. Nancy Chiaravalloti joins me to talk about what researchers are learning and what types of cognitive rehabilitation are available today. Dr. Chiaravalloti is the Director of the Center for Neuropsychology and Neuroscience Research and the Center for Traumatic Brain Injury Research at Kessler Foundation. Dr. Chiaravalloti's research is focused on ways to stimulate new learning, memory, and processing speed. We're also sharing some promising results from a preclinical study of an investigational Epstein-Barr Virus vaccine (And we'll explain why this is so important to the MS community!). Dr. Nuriel Moghavem will take us through a day in the life of an MS Fellow. We'll share the disappointing results of the Phase 3 clinical trial for Evobrutinib. And we'll tell you about super-small biological robots that seem capable of doing some amazing things -- including encouraging the growth of healthy nerve cells to replace damaged nerve cells. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Cognitive Rehabilition :22 Promising news from a preclinical study of an investigational EBV vaccine 2:08 A day in the life of an MS Fellow with Dr. Nuriel Moghavem 4:21 Evobrutinib Phase 3 clinical trial has failed to meet its end points 17:19 Biological robots assemble into a "superbot" and encourage the growth of healthy nerve cells 18:28 Dr. Nancy Chiaravalloti discusses breakthrough treatment for cognitive dysfunction in MS 21:19 Share this episode 31:48 Have you downloaded the free RealTalk MS app? 32:08 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/328 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: jon@realtalkms.com 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 STUDY: Motile Living Biobots Self-Construct from Adult Human Somatic Progenitor Seed Cells 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 328 | |||
| Episode 327: Cannabis and MS with Dr. Michelle Cameron | 04 Dec 2023 | 00:25:35 | |
A growing number of people living with MS are turning to cannabis for symptom management. But which MS symptoms have responded to being treated with cannabis? Where should someone buy medical cannabis? And is using medical cannabis even legal? Dr. Michelle Cameron returns to the podcast to discuss the risks and benefits of using cannabis for symptom management. Dr. Cameron is a neurologist and physical therapist, as well as a professor in the Department of Neurology at Oregon Health & Science University. We're also sharing some long overdue good news from United Airlines for passengers who use wheelchairs. We'll tell you about the first adaptive clinical trial for people living with progressive MS in Australia. We'll give you the details of the FDA's clearance of an artificial intelligence platform designed to analyze MRI scans to detect and monitor MS disease activity. And we're sharing promising results from a Phase 1 clinical trial that focused on using neural stem cells to stop disease progression among people living with secondary progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Cannabis and MS :22 United promises friendlier skies for wheelchair users 1:04 PLATYPUS adaptive clinical trial to begin in Australia 3:47 FDA approves artificial intelligence platform for detecting MS disease activity in MRI scans 5:34 Neural stem cell Phase 1 clinical trial shows encouraging progress 6:47 Dr. Michelle Cameron discusses the risks and benefits of using cannabis to manage MS symptoms 9:07 Share this episode 24:01 Have you downloaded the free RealTalk MS app? 24:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/327 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: jon@realtalkms.com 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 STUDY: Phase 1 Clinical Trial of Intracerebroventricular Transplantation of Allogenic Neural Stem Cells in People with Progressive 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 327 | |||
| Episode 326: A Happy Ending That Almost Wasn't with Chris Holland | 27 Nov 2023 | 00:29:55 | |
Chris Holland had a successful career working as a paralegal when he was diagnosed with MS in 2004. And, while everyone reacts differently to being diagnosed with MS, no one could have predicted what happened next, as Chris lost everything battling demons he never imagined he would ever face. But it would be a mistake betting against Chris Holland's resilience. Bouncing back, Chris decided to pursue his lifelong dream of becoming a chef. Today, Chris is a three-time Food Network Chopped champion and the owner and executive chef at Kantina, in Sparkill, New York. This week, Chris joins me to share a story with a happy ending that almost wasn't. November is National Family Caregivers Month, which seems to be the perfect time for iConquer MS to expand its community to include MS caregivers. We're sharing all the details of the newly launched iConquer MS Caregivers initiative. It's impossible to discuss caregiving without mentioning the lifelong contributions made by former First Lady Rosalynn Carter. This week, we're remembering Mrs. Carter and reflecting on her legacy. And we'll tell you how Infusion Day actually became Spa Day in Dawson City, Yukon. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Chris Holland shares his remarkable story of resilience :22 November is National Family Caregivers Month 1:22 Remembering Former First Lady Rosalynn Carter 1:52 If you're caring for a loved one with MS, iConquer MS has set out a welcome mat 3:07 Infusion Day is now Spa Day in Dawson City, Yukon 7:13 Chris Holland talks about how he barely made it all the way back 9:34 Share this episode 28:24 Have you downloaded the free RealTalk MS app? 28:44 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/326 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: jon@realtalkms.com 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 iConquer MS Caregivers PAPER: Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Caregiver Protocol 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 326 | |||
| Episode 325: Making Your Home Safe and Accessible with Tracy Carrasco | 20 Nov 2023 | 00:28:57 | |
According to the CDC, 36 million falls are reported each year, resulting in 3 million adults being transported to the Emergency Room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and 30% fall multiple times. As falls at home are common, occupational therapist Tracy Carrasco joins me to share tips and strategies for making your home safe and accessible. We're also sharing a research roundup featuring results from a few different clinical trials that are focused on the impact of diet on MS. And that includes the Swank diet, the Wahls diet, the Mediterranean diet, and a simple low-fat diet. We'll tell you about a novel study that explored the economic impact of an Epstein-Barr Virus vaccine on the cost of MS care in Australia. If you're living with MS, we have your invitation to participate in the Patient Reported Outcomes for Multiple Sclerosis (PROMS) initiative survey. And we'll tell you how you can catch the video replay of the International Progressive MS Alliance global webcast on research and treatment for cognitive challenges in progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Some of the things I'm thankful for :22 Research Roundup: The impact of diet on MS 2:40 Survey results show how an EBV vaccine could impact the cost of MS care in Australia 9:03 If you're living with MS, here's your invitation to participate in the PROMS initiative online survey 12:22 How to catch the video replay of the International Progressive MS Alliance global webcast about research and treatment for cognitive challenges in progressive MS 13:38 Tracy Carrasco shares tips for making your home safe and accessible 15:25 Share this episode 27:26 Have you downloaded the free RealTalk MS app? 27:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/325 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: jon@realtalkms.com 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 STUDY: A Low-Fat Diet Improves Fatigue in Multiple Sclerosis: Results from a Randomized Controlled Trial STUDY: Diet-Induced Changes in Functional Disability are Mediated by Fatigue in Relapsing-Remitting Multiple Sclerosis: A Secondary Analysis of the WAVES Randomized Parallel-Arm Trial STUDY: Exploring the Cost-Effectiveness of EBV Vaccination to Prevent Multiple Sclerosisin an Australian Setting PARTICIPATE: The PROMS Initiative Survey VIDEO: Cognitive Challenges in Progressive 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 325 | |||
| Episode 324: Avoiding the Risks of Misdiagnosing MS with Dr. Andrew Solomon | 13 Nov 2023 | 00:32:14 | |
MS is misdiagnosed too often, which leaves some people who don't have MS receiving expensive disease-modifying therapy that they don't need, while leaving other people who do have MS still not receiving treatment with a disease-modifying therapy that will slow disability progression and preserve their quality of life longer. My guest, Dr. Andrew Solomon, is the lead author of a paper published by a team of international experts that provides updated guidance for healthcare professionals on clinical approaches to diagnosing MS. Dr. Solomon joins me to discuss why MS can be difficult to diagnose and how that situation can be improved upon. We're also sharing the results of a study that showed how neurofilament light chain levels in the blood can predict MS disability progression one or two years before that worsening occurs. For the past five years, we've been following the path of an investigative stem cell therapy through clinical trials. We'll tell you why the company behind this therapy announced it was stopping its Phase 2 trial. If you're a female living with MS, we're sharing an invitation for you to participate in an important online survey about a topic that's too often overlooked. And we'll tell you about the results of a study that underscore the value and importance of staying on your disease-modifying therapy. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The risks of misdiagnosing MS :22 Results from a study show that neurofilament light chain level can predict future disability progression 1:37 We've been following an investigative stem cell therapy since 2018. Now, the company developing this therapy is ending the Phase 2 clinical trial 4:59 If you're a female living with MS, we have an invitation for you to participate in an important survey 7:15 Study results underscore the importance of staying on your disease-modifying therapy 9:01 Dr. Andrew Solomon discusses why MS is difficult to diagnose and what experts are doing about that 12:54 Share this episode 30:41 Have you downloaded the free RealTalk MS app? 31:02 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/324 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: jon@realtalkms.com 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 STUDY: Neurofilament Light Chain Elevation and Disability Progression in Multiple Sclerosis SURVEY: Patient Education Preferences Regarding Sexual Health in Women with Multiple Sclerosis STUDY: Impact of Adherence to Disease-Modifying Drugs in Multiple Sclerosis: A Study on Italian Real-World Data 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 324 | |||
| Episode 323: Support for Veterans with MS with Izzy Abbass and a New Project for Jamie-Lynn Sigler | 06 Nov 2023 | 00:31:57 | |
More than 70,000 U.S. veterans are living with MS. That's why the only federal funding specifically earmarked for MS research comes from the U.S. Department of Defense. It's why the U.S. Department of Veterans Affairs has established the Multiple Sclerosis Centers of Excellence. And it's why, in 2019, the National MS Society established a strategic partnership with the U.S. Department of Veterans Affairs. This week, we're saluting the men and women of our armed services, and we're highlighting some of the resources available to U.S. veterans who are living with MS. Izzy Abbass, the Co-Chair of the Paralyzed Veterans of America MS Committee, joins me to discuss all the ways the PVA assists U.S. veterans in obtaining their VA benefits. We're also sharing the results of a study that compared the efficacy of being treated with autologous hematopoietic stem cell transplantation (aHSCT) and being treated with a high-efficacy disease-modifying therapy. We'll tell you about the results of a study that may begin to explain why African Americans who are living with MS often experience a more severe disease course. We'll give you the details about where and how to register for this Thursday's International Progressive MS Alliance's global webcast that's focused on treatments and new research for cognitive challenges in progressive MS. And actress Jamie-Lynn Sigler is also joining me this week to talk about her MS journey and to share some news about a new project that she has developed for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Resources for U.S. Veterans living with MS :22 My guest, Izzy Abbass, explains how the PVA assists U.S. Veterans with MS in receiving their VA benefits 2:41 A study compared the efficacy of autologous hematopoietic stem cell transplantation (aHSCT) with a high-efficacy disease-modifying therapy 11:21 Results of a study may begin to explain why African Americans who are living with MS often experience a higher level of disease activity and faster disability progression 14:36 This Thursday, the International Progressive MS Alliance is hosting a global webcast exploring treatments and research focused on cognitive challenges in progressive MS 17:31 Jamie-Lynn Sigler discusses her new guide for people living with MS 19:13 Share this episode 30:25 Have you downloaded the free RealTalk MS app? 30:45 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/323 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: jon@realtalkms.com 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 National MS Society: Resources for U.S. Veterans with Multiple Sclerosis U.S. Department of Veteran Affairs: Multiple Sclerosis Centers of Excellence Paralyzed Veterans of America: Multiple Sclerosis Resources STUDY: Autologous Hematopoietic Stem Cell Transplantation is Superior to Alemtuzumab in Patients with Highly Active Relapsing Multiple Sclerosis and Severe Disability STUDY: African American Patients with Multiple Sclerosis (MS) Have Higher Proportions of CD19+ and CD20+ B-Cell Lineage Cells in Their Cerebrospinal Fluid than White MS Patients REGISTER for Thursday's Global Webcast on Cognitive Challenges in Progressive 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 323 | |||
| Episode 322: Women's Research in MS with Rachel Horne and Dr. Rhonda Voskuhl | 30 Oct 2023 | 00:33:38 | |
Rachel Horne is a journalist who was diagnosed with MS in 2009. Since then, Rachel has developed a first-hand understanding of the knowledge gaps that remain when it comes to understanding the impact of MS on women's health and the impact of women's health issues on MS. As Rachel reviewed MS research, she also observed that when it came to acknowledging outstanding MS research, it was rare that a female researcher was singled out to receive recognition for their work. This year, Rachel took action and did something about this unbalanced situation, establishing the Rachel Horne Prize for Women's Research in MS. Dr. Rhonda Voskuhl has dedicated much of her career to improving our understanding of why MS affects men and women differently. Dr. Voskuhl was honored at the recent 2023 joint ECTRIMS-ACTRIMS meeting as the first recipient of the Rachel Horne Prize for Women's Research in MS. I met up with Rachel Horne and Dr. Rhonda Voskuhl at the 2023 joint ECTRIMS-ACTRIMS meeting, and you won't want to miss our conversation. We're also sharing an update on an investigational disease-modifying therapy for people with nonactive secondary progressive MS that's administered at home through a nasal spray. We'll tell you how artificial intelligence is changing the way that MRI scans are analyzed. And we'll explain why that's a good thing for people living with MS. And we're sharing the results of a study that demonstrates how obesity impacts symptom severity and quality of life for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Women's Research in MS :22 An investigational DMT for people with nonactive secondary progressive MS that's administered at home through a nasal spray 2:35 How artificial intelligence is changing MRI analysis for people living with MS 4:50 How obesity impacts symptom severity and quality of life in people living with MS 6:48 Rachel Horne and Dr. Rhonda Voskuhl discuss research into how MS impacts women's health issues and how women's health issues impact their MS 9:44 Share this episode 32:06 Have you downloaded the free RealTalk MS app? 32:26 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/322 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: jon@realtalkms.com 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 ECTRIMS EXTRA with Dr. Jiwon Oh RealTalk MS ECTRIMS EXTRA with Dr. Anthony Feinstein RealTalk MS ECTRIMS EXTRA with Dr. Annette Langer-Gould RealTalk MS ECTRIMS EXTRA with Dr. Daniel Ontaneda RealTalk MS ECTRIMS EXTRA with Dr. Robert Motl ECTRIMS PRESENTATION: Obesity Negatively Affects Disease Progression, Cognitive Functioning, and Quality of Life in People with 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 322 | |||
| ECTRIMS EXTRA: Dr. Robert Motl | 28 Oct 2023 | 00:10:20 | |
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Robert Motl. Dr. Motl is a professor in the department of Kinesiology and Nutrition, and a professor in the department of Rehabilitation Sciences at the University of Illinois Chicago. Dr. Motl is responsible for generating much of the foundational research validating the benefits of common physical activity in people living with MS. 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: https://realtalkms.com/ectrims2305 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS ECTRIMS Extra with Dr. Robert Motl | |||
| ECTRIMS EXTRA with Dr. Daniel Ontaneda | 27 Oct 2023 | 00:09:03 | |
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Daniel Ontaneda. Dr. Ontaneda is a neurologist at the Cleveland Clinic Neurological Institute's Mellen Center for Multiple Sclerosis and, while attending the ECTRIMS-ACTRIMS meeting, Dr. Ontaneda co-chaired a scientific session on artificial intelligence in MS. 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: https://realtalkms.com/ectrims2304 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS ECTRIMS Extra with Dr. Daniel Ontaneda | |||
| Episode 419: A Whole-Person Health Approach to MS Care with Dr. Lynne Shinto | 08 Sep 2025 | 00:33:11 | |
Some people living with MS adhere to a treatment plan based exclusively on what we might consider traditional medicine. Others opt for alternative treatments. And, still, others take a whole-person health approach, blending integrative medicine with traditional treatments designed to support an individual's mind and body. Dr. Lynne Shinto joins me to discuss how a whole-person health approach can transform living with MS. Dr. Shinto is a Professor of Neurology and an MS Specialist at the Center for Women's Health at Oregon Health and Science University.
We're also sharing some encouraging news about funding for the National Institutes of Health in 2026. We'll explain the research that has led to the identification of a new and quite different subtype of MS. We'll tell you about this year's winner of the Rachel Horne Prize for Women's Research in Multiple Sclerosis. The National MS Society's virtual program, New to MS: Navigating Your Journey, takes place in just two days. We have all the details! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: A whole-person health approach to MS care :22 House Republicans reject President Trump's $20 billion cut to 2026 NIH funding 1:26 Have researchers identified a new MS subtype? 4:16 This year's winner of the Rachel Horne Prize for Women's Research in Multiple Sclerosis 8:27 We're two days away from the National MS Society's New to MS: Navigating Your Journey virtual program 9:53 Dr. Lynne Shinto discusses how taking a whole-person approach to MS care can transform your MS journey 12:04 Share this episode 31:41 Next week's episode 32:01 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/419 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: jon@realtalkms.com 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 PARTICIPATE: Take the Shaping Tomorrow Together Survey REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA SIGN UP: Become an MS Activist STUDY: Large-Scale Online Assessment Uncovers a Distinct Multiple Sclerosis Subtype with Selective Cognitive Impairment REGISTER: New To MS: Navigating Your Journey 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 419 | |||
| ECTRIMS EXTRA: Dr. Annette Langer-Gould | 26 Oct 2023 | 00:06:20 | |
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Annette Langer-Gould. Dr. Langer-Gould is an MS Specialist at Kaiser-Permanente, and while at the ECTRIMS-ACTRIMS meeting, she co-chaired a session on MS and comorbidities. 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: https://realtalkms.com/ectrims2303 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS ECTRIMS Extra with Dr. Annette Langer-Gould | |||
| ECTRIMS EXTRA with Dr. Anthony Feinstein | 25 Oct 2023 | 00:08:43 | |
With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Anthony Feinstein. Dr. Feinstein is a Professor of Psychiatry at the University of Toronto, and his expertise is in the neuropsychiatry of multiple sclerosis. Dr. Feinstein has studied behavioral disorders in people living with MS for 26 years. He also maintains a busy clinical practice in which over 80% of the patients are people living with MS. 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: https://realtalkms.com/ectrims2302 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS ECTRIMS Extra with Dr. Anthony Feinstein | |||
| Episode 321: More from the 2023 Joint ECTRIMS-ACTRIMS Meeting with Dr. Helen Tremlett | 23 Oct 2023 | 00:22:59 | |
This week, we're sharing more from the 2023 joint ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) annual meeting. What if we could identify MS before anyone experienced any of the typical clinical symptoms? Would treating that person with a high-efficacy disease-modifying therapy prevent the clinical symptoms of MS from even developing? Those are the questions that make the study of the MS prodrome so fascinating and important. At the joint ECTRIMS-ACTRIMS meeting, I met up with one of the foremost experts on the prodromal phase of MS, Dr. Helen Tremlett, who shared an update on what she's continuing to learn about the MS prodrome. We'll also tell you about Dr. Jeffrey Huang's work in developing an experimental drug that may stop MS progression and stimulate remyelination. We're sharing a report from Deloitte that analyzes the economic impact of the pandemic gap for people living with MS in Canada. We'll tell you about the results of a study that show lower-efficacy disease-modifying therapies can lead to faster disability accumulation. You'll hear about the work being done to deliver Ocrevus in a subcutaneous injection. And we'll tell you what happened that caused a study focused on stopping your DMT if your MS was stable to be called off. I had the good fortune of speaking with several research presenters at the joint ECTRIMS-ACTRIMS meeting, and I'll be releasing those bonus ECTRIMS Extra Conversations all week long. It's an opportunity for you to listen in to my conversations with some of the top MS research and clinical experts in the world. Be sure to look for these conversations throughout this week! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: More from the largest MS research conference in the world :22 Don't miss ECTRIMS Extra Conversations all week long! Georgetown University researchers develop a drug that may stop MS progression and stimulate remyelination 1:20 The cost of the pandemic gap for people living with MS in Canada 3:10 Study shows that lower-efficacy DMTs can lead to faster disability accumulation 7:12 Clinical trial demonstrates that subcutaneous formulation of Ocrevus is safe and effective 10:47 Your MS stable, no relapses for at least 5 years. Can you stop your DMT? 12:33 Dr. Helen Tremlett explains how understanding the MS prodrome can change the future of MS treatment 15:49 Share this episode 21:26 Have you downloaded the free RealTalk MS app? 21:47 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/321 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: jon@realtalkms.com 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 REPORT: The Socioeconomic Cost of, and Impact of, COVID-19 on Multiple Sclerosis in Canada ECTRIMS PRESENTATION: Subcutaneous Ocrelizumab in Patients with Multiple Sclerosis: Results of the Phase 1b Dose-Finding OCARINA 1 Study ECTRIMS PRESENTATION: Discontinuation of First-Line Disease-Modifying Therapy in Stable MS (DOT-MS): An Early-Terminated Multicenter Randomized Controlled Trial 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 321 | |||
| ECTRIMS EXTRA with Dr. Jiwon Oh | 19 Oct 2023 | 00:10:19 | |
With about 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh. Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Toronto, Canada. 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: https://realtalkms.com/ectrims2301 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS ECTRIMS EXTRA with Dr. Jiwon Oh | |||
| Episode 320: From ECTRIMS-ACTRIMS 2023 with Bonnie Higgins and Dr. Tim Coetzee | 16 Oct 2023 | 00:17:53 | |
Last week, more than 9,000 MS research scientists and clinicians from more than 110 countries traveled to Milan to attend the largest MS research conference in the world, the 2023 joint ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) annual meeting. In keeping with a RealTalk MS tradition, just as the meeting was ending and the thousands of attendees were heading for the exits, I connected with the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, to discuss some of the research that captured his attention during the 3-day meeting. Earlier in the final day of the joint ECTRIMS-ACTRIMS meeting, I connected with Bonnie Higgins, who was in Milan to participate in the ECTRIMS MS Patient Community Day. Bonnie was diagnosed with MS in 1994, and she shared her perspective on this remarkable conference. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the largest MS research conference in the world :22 Bonnie Higgins shares her perspective on ECTRIMS-ACTRIMS 2023 :50 Dr. Tim Coetzee talks about the ECTRIMS presentations that caught his eye 9:11 Share this episode 16:23 Have you downloaded the free RealTalk MS app? 16:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/320 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: jon@realtalkms.com 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 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 320 | |||
| Episode 319: Global Survey Results Support a New Framework for Describing MS with Dr. Tim Coetzee | 09 Oct 2023 | 00:28:54 | |
We've been using the same MS clinical course descriptors (relapsing-remitting, secondary progressive, and primary progressive) for almost three decades. As research has provided so much additional information and insight, is it time to update the way we describe, diagnose, and treat MS? The International Advisory Committee on Clinical Trials in Multiple Sclerosis has established a working group to explore this question. And, as a means of eliciting feedback from stakeholders around the world, a global survey was launched. The National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, joins me to share the results of this survey, which may represent a first step toward delivering next-generation MS care. We're just two days away from the Hispanic/Latinx MS Experience Summit! We'll tell you why you don't want to miss this free online event, and we'll even tell you how to register. We're sharing the results of a study that provides strong evidence for adopting hematopoietic stem cell transplantation (aHSCT) as a standard treatment option for people living with relapsing-remitting MS. And we're sharing evidence from a Phase 3 clinical trial that demonstrates how cognitive behavioral therapy delivered over the internet significantly reduces depressive symptoms and improves the quality of life for people with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: When it comes to adopting a new framework for describing MS, the survey says... :22 The Hispanic-Latinx MS Experience Summit is just two days away! 2:02 Swedish study shows that autologous hematopoietic stem cell transplantation (aHSCT) is an effective treatment for adults with relapsing-remitting MS 3:41 Phase 3 clinical trial shows that cognitive behavioral therapy delivered over the internet significantly reduces depressive symptoms among people liviing with MS 6:07 Dr. Tim Coetzee shares the results of a global survey that asked whether it's time to update the way we describe, diagnose, and treat MS 9:36 Share this episode 27:21 Have you downloaded the free RealTalk MS app? 27:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/319 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: jon@realtalkms.com 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 Do the Current MS Clinical Course Descriptors Need to Change and If So, How?: A Survey of the MS Community RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee Register for the Hispanic/Latinx MS Experience Summit STUDY: Heaematopoietic Stem Cell Transplantation for Treating Multiple Sclerosis in Sweden: An Observational Cohort Study National MS Society Recommendations for aHSCT-Bone Marrow Transplant for MS STUDY: Internet-Derived Cognitive Behavioural Therapy Programme to Reduce Depressive Symptoms in Patients with Multiple Sclerosis: A Multicentre, Randomised, Controlled Phase 3 Trial 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 319 | |||
| Episode 318: Understanding Shared-Decision Making with Dr. Lilyana Amezcua | 02 Oct 2023 | 00:36:05 | |
In this episode of RealTalk MS, we're talking about what you should be talking about with your neurologist or MS Specialist. Shared decision-making is a key component of patient-centered health care. It's a process in which clinicians and patients work together to make evidence-based decisions on tests, treatments, and care plans that balance risks and expected outcomes with patient preferences and values. But is shared decision-making actually occurring? Or are people living with MS still being handed a bunch of pamphlets published by different pharmaceutical companies and being asked to read them and let their doc know which disease-modifying therapy they'd like to start? How do we bridge the gap between the promise of shared decision-making and what, for too many people living with MS, is still an unfortunate reality? Dr. Lilyana Amezcua joins me to share her thoughts on how to start the kinds of conversations you should be having with your neurologist or MS specialist. Dr. Amezcua is an Associate Professor of Neurology, a diversity, equity, and inclusion champion, and the fellowship program director at the University of Southern California Keck School of Medicine. The National MS Society is hosting the second annual Hispanic/Latinx MS Experience Summit next week. We're sharing all the details, and we'll tell you how you can register for this free virtual event. We'll fill you in on the European Medicine Agency's approval of the first biosimilar for treating MS. And we're sharing the results of an important study that focused on how COVID mRNA vaccines affect people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Getting shared decision-making right :22 The Hispanic/Latinx MS Experience Summit is happening Oct. 12th! 2:10 EMA approves the first biosimilar to treat MS 3:54 Study focuses on the affect of COVID mRNA vaccines on people living with MS 4:39 Dr. Lilyana Amezcua discusses how to make shared decision-making work for you and your neurologist 8:57 Share this episode 34:35 Have you downloaded the free RealTalk MS app? 34:55 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/318 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: jon@realtalkms.com 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 Register for the Hispanic/Latinx MS Experience Summit RealTalk MS Episode 315: Understanding Generic and Biosimilar Drugs for MS with Dr. Jiwon Oh STUDY: mRNA Covid-19 Vaccination Does Not Exacerbate Symptoms or Trigger Neural Antibody Response 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 318 | |||
| Episode 317: It's Our 6th Anniversary! These Are the Most Impactful Conversations We've Had Over the Past Six Years | 25 Sep 2023 | 00:19:20 | |
RealTalk MS is now 6 years old! We've covered a lot of ground in more than 300 episodes over the past 6 years. And I'm marking our 6-year anniversary by highlighting the most impactful conversations we've had in each of the past 6 years. 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: https://realtalkms.com/317 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: jon@realtalkms.com 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 2: The Congressional Threat to Your Healthcare RealTalk MS Episode 21: MS Advocacy: What It Is and Why It's So Important RealTalk MS Episode 81: The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, and Dr. Ruth Ann Marrie RealTalk MS Episode 125: The Pathways to Cures Think Tank RealTalk MS Episode 208: COVID-19 Vaccine Update: The Third Dose and MS with Dr. Nancy Sicotte and Victoria Holmes RealTalk MS Episode 229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi RealTalk MS Episode 231: Evidence Shows EBV Triggers MS -- Understanding the Impact of this Breakthrough Research with Dr. Bruce Bebo 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 317 | |||
| Episode 316: Sex and MS with Madelyn Esposito | 18 Sep 2023 | 00:31:00 | |
It's not unusual to see sex and intimacy become unintended and unnecessary collateral damage in the day-to-day-challenges of living with MS. But it doesn't have to be that way. Madelyn Esposito, LPC, NCC, CST, joins me to discuss some of the common sexual problems faced by people living with MS, ways to maintain intimacy in your relationships, and tips for maintaining a healthy sex life. Kristine Werner-Ozug and Cheryl Weeks-Frey take you inside the workings of the MS Society's Community Review of MS Research Committee. We're also sharing important survey results that support updating the way that we describe MS, research MS, and treat MS. We'll give you the details of a novel inverse vaccine that's been shown to stop the autoimmune response associated with MS. And we're congratulating Dr Rhonda Voskuhl for being named the first recipient of the Rachel Horne Prize for Women's Research in MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Let's talk about sex and MS :22 Next Week: It's our 6th anniversary! 1:38 Kristine Werner-Ozug and Cheryl Weeks-Frey share their experiences as members of the National MS Society's Community Review of MS Research Committee 2:22 Survey results support updating the MS clinical course descriptors 9:43 An inverse vaccine stops the animal model of MS 13:43 Dr. Rhonda Voskuhl is the first winner of the Rachel Horne Prize for Women's Research in MS 16:40 Sex therapist Madelyn Esposito shares tips for maintaining intimacy and enjoying a healthy sex life when you're living with MS 18:31 Share this episode 29:28 Have you downloaded the free RealTalk MS app? 29:48 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/316 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: jon@realtalkms.com 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 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee Do the Current MS Clinical Course Descriptors Need to Change and If So, How? A Survey of the MS Community STUDY: Synthetically Glycosolated Antigens for the Antigen-Specific Suppression of Established Immune Responses 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 316 | |||
| Episode 315: Understanding Generic and Biosimilar Drugs for MS with Dr. Jiwon Oh | 11 Sep 2023 | 00:39:11 | |
Just a couple of weeks ago, the FDA approved the first biosimilar medication for treating MS. As generics and now, biosimilars, become more available, it seems like the right time for us to get clear on the similarities and differences between generics, biosimilars, and the name-brand drugs that they mimic. Dr. Jiwon Oh joins me to explain everything you need to know to be an informed medical consumer when it comes to generic and biosimilar disease-modifying therapies. Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Ontario. We'll also tell you about a simple blood test that can measure MS disease activity. Izzy Abbas, the Co-Chairperson of the Paralyzed Veterans of America MS Committee will explain how the PVA supports veterans who are living with MS. We're sharing the details of a large study that determined routine vaccinations don't cause MS relapses. And if you're in New York and you're ready to laugh for a good cause, we have the details about the StandUp2MS comedy club benefit at Gotham Comedy Club. It's less than a week away! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Generic and biosimilar drugs for MS :22 A simple blood test that can assess MS disease activity 1:51 Izzy Abbas explains how the Paralyzed Veterans of America supports veterans living with MS 7:19 The StandUp2MS comedy club benefit is less than a week away! 17:28 Study results show that routine vaccinations don't cause MS relapses 18:37 Dr. Jiwon Oh explains the differences and similarities between generics, biosimilars, and the name-brand drugs that they mimic 21:19 Share this episode 37:40 Have you downloaded the free RealTalk MS app? 38:00 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/315 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: jon@realtalkms.com 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 STUDY: Clinical Validation of a Multi-Protein, Serum-Based Assay for Disease Activity Assessments in Multiple Sclerosis Paralyzed Veterans of America Standup2MS Comedy Club Benefit STUDY: Vaccines and the Risk of Hospitalization for Multiple Sclerosis Flare-Ups National MS Society: Detailed information on vaccinations for people living with 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 315 | |||
| Episode 418: The Importance of Developing a Growth Mindset When You're Living With MS with Dr. Mirian Franco | 01 Sep 2025 | 00:35:40 | |
Living with MS means living with uncertainty, possible physical disability or cognitive dysfunction, bouts of crushing fatigue, mood changes, and let's not forget the very real irritation of well-meaning people telling you how healthy you look. Just processing the world around you can feel challenging. In this episode, psychologist Dr. Miriam Franco joins me to discuss how developing a growth mindset can make all the difference in how you experience your MS journey.
We're also sharing a real-world example of how the drastic cuts in federal funding are already impacting MS care. We'll tell you about the first country in the world to approve Tolebrutinib, a new disease-modifying therapy for nonrelapsing secondary progressive MS. And we'll explain why people are particularly excited about this medication. We'll share details about the MS Clinical Imaging and Data Resource that's been launched by the International Progressive MS Alliance. We'll tell you how and where to catch the MS Standup Comedy Benefit next Monday in New York. And we're reminding you about your opportunity to impact future MS therapies by helping the FDA better understand what living with MS is really like. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Developing a growth mindset :22 How those federal research funding cuts are impacting MS patient care 1:30 United Arab Emirates becomes the first country in the world to approve Tolebrutinib for nonrelapsing secondary progressive MS 5:05 The International Progressive MS Alliance launches an MS Clinical Imaging and Data Resource open to the MS research community 8:32 The MS Standup Comedy Benefit takes place next Monday in New York 10:15 Add your voice and participate in the Shaping Tomorrow Together initiative 11:04 Dr. Miriam Franco discusses what it means to have a growth mindset when you're living with MS 14:50 Share this episode 34:11 Next week's episode 34:31 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/418 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: jon@realtalkms.com 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 PARTICIPATE: Take the Shaping Tomorrow Together Survey REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA VIDEO: Dr. Robert Fox, Principal Investigator in the Phase 3 Clinical Trial for Tolebrutinib and Secondary Progressive MS VIDEO: Dr. Jiwon Oh, Principal Investigator in the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS The International Progressive MS Alliance Clinical Imaging and Data Resource ATTEND: MS Stand-Up Comedy Benefit 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 418 | |||
| Episode 314: Pelvic Floor Health and MS with Jill Ehrmantraut | 04 Sep 2023 | 00:24:10 | |
When you're living with MS, managing your pelvic floor health may not be among the first things you think about. But pelvic floor dysfunction, and the problems that arise from it, like bladder and bowel issues, can seriously impact your health, well-being, and quality of life. Jill Ehrmantraut, a physical therapist and women's health clinical specialist with advanced training in pelvic rehabilitation, joins me to explain what pelvic floor rehab is all about, why it's important, and how you can get started on the path to improving your pelvic floor health. We'll also tell you about the first 10 drugs that will be subject to price negotiations between Medicare and the companies that manufacture these drugs. (And we'll tell you how that's going to benefit tens of thousands of people living with MS) We'll share the details of how you can weigh in on setting future research priorities for studying women's health in MS. We'll let you know how you can participate in the Patient Community Day at ECTRIMS, the largest MS research conference in the world. If you're in New York and you're ready to laugh for a good cause, we have the details about the upcoming StandUp2MS comedy club benefit at Gotham Comedy Club. And we're sharing U.S. News & World Report's ranking of the best hospitals in the U.S. for neurology and neurosurgery. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Pelvic floor rehab can be a difference-maker in living your best life with MS :22 CMS announces the first 10 prescription drugs for which Medicare will negotiate prices 1:19 You can help set future research priorities for studying women's health in MS 3:00 The largest MS research conference in the world is hosting a Patient Community Day 4:17 The StandUp2MS comedy club benefit is less than two weeks away! 5:45 U.S. News & World Report has issued its ranking of the top hospitals in the U.S. for neurology and neurosurgery 6:58 Jill Ehrmantraut explains what pelvic floor health and why it's especially important when you're living with MS 9:52 Share this episode 22:37 Have you downloaded the free RealTalk MS app? 22:57 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/314 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: jon@realtalkms.com 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 SURVEY: Research Priorities in Women's Health in Multiple Sclerosis MSMilan Patient Community Day Information and Registration Standup2MS Comedy Club Benefit 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 314 | |||
| Episode 313: Disaster Preparedness for People Affected by MS with Mary Casey-Lockyer | 28 Aug 2023 | 00:29:46 | |
Fire, flood, record-setting heat, tropical storm, earthquake -- we've seen it all in the past several weeks! Natural disasters can present a whole series of unique challenges for people affected by MS. Last year, I had an opportunity to talk about disaster preparedness for people affected by MS with Mary Casey-Lockyer, the Senior Medical Advisor to Disaster Operations at the American Red Cross. As extreme weather events become a more frequent and regular occurrence in our everyday weather patterns, I thought it made sense to revisit my conversation with Mary. Mary has just recently retired from her position at the Red Cross, but I think you'll find her tips and strategies as worthwhile and valuable today as they were a year ago. We'll also tell you about Tyruko, the first biosimilar to receive FDA approval for treating MS (and we'll make sure you know exactly what biosimilars are and where they fit in the spectrum of pharmaceutical treatments). We'll share the results of an important clinical trial that may cause experts to re-think when MS begins and when it should be treated. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Revisiting disaster preparedness for people affected by MS :22 The FDA has approved the first biosimilar for treating MS 1:38 Results from a clinical trial show that treating RIS with Aubagio significantly reduces the likelihood of developing MS 4:34 Mary Casey-Lockyer discusses how someone living with MS should prepare for a natural disaster 7:39 Share this episode 28:13 Have you downloaded the free RealTalk MS app? 28:33 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/313 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: jon@realtalkms.com 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 STUDY: Teriflunomide and Time to Clinical Multiple Sclerosis in Patients with Radiologically Isolated Syndrome 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 313 | |||
| Episode 312: Adapting Exercise for MS with Dr. Gretchen Hawley | 21 Aug 2023 | 00:30:11 | |
Contrary to what was once believed to be true, we now know that exercise and physical activity can deliver several important benefits for people living with MS, and actually improve your quality of life. Experts recommend exercise and physical activity for everyone living with MS, at every level of ability. Dr. Gretchen Hawley joins me this week to talk about what kinds of exercises you can and should be doing -- at your level of ability. We'll also tell you about an experimental Epstein-Barr Virus vaccine that was shown to induce a durable immune response in mice. (And we'll remind you why experts believe that an EBV vaccine could eliminate most of the MS in the world!) And we'll give you the details of the National MS Society's latest $19.4 million investment in research focused on stopping MS in its tracks, restoring lost function, and ending MS forever. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Dr. Gretchen Hawley adapts MS-specific exercise for every level of ability :22 An experimental EBV vaccine induces a durable immune response in mice 1:59 The National MS Society invests $19.4 million in research to drive Pathways to Cures 4:38 Dr. Gretchen Hawley discusses adapting MS-specific exercises for every level of ability 7:38 Share this episode 28:38 Have you downloaded the free RealTalk MS app? 28:59 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/312 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: jon@realtalkms.com 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 The MSing Link Online Wellness Program for Multiple Sclerosis The MSing Link: The Essential Guide to Improve Walking, Strength, & Balance for People with Multiple Sclerosis STUDY: Lymph Node Targeted Multi-Epitope Subunit Vaccine Promotes Effective Immunity to EBV in HLA-Expressing Mice National MS Society Commits $19.4 Million for Research to Drive Pathways to Cures 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, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 312 | |||