RealTalk MS

Jon Strum

Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You’ll meet the scientists who are creating tomorrow’s MS treatments today. You’ll hear from the experts discussing how the latest tweaks and changes to our healthcare laws will impact your MS treatment. And we’ll be talking to the courageous MS warriors who are out there advocating on behalf of the MS community every day, as well as the men and women who are committed to living their best lives with MS and living their best lives as MS caregivers. If you're dealing with multiple sclerosis in your life -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS. read less
Health & FitnessHealth & Fitness

Episodes

Episode 346: Why Members of Minority Communities May Face A More Severe MS Disease Course with Dr. Annette Langer-Gould
3d ago
Episode 346: Why Members of Minority Communities May Face A More Severe MS Disease Course with Dr. Annette Langer-Gould
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ VIDEO: International Progressive MS Alliance 2024 Progress Report https://www.youtube.com/watch?v=4ojRaLp_J1w STUDY: Exploring the Association Between Weight Loss-Inducing Medications and Multiple Sclerosis: Insights from the FDA Adverse Event Reporting System Database https://journals.sagepub.com/doi/10.1177/17562864241241383 STUDY: Disease-Modifying Therapy Initiation Patterns in Multiple Sclerosis in Three Large Populations https://journals.sagepub.com/doi/10.1177/17562864241233044 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 346 Guest: Dr. Annette Langer-Gould Privacy Policy
Episode 345: A Deep Dive into Women's Health and MS with Dr. Rhonda Voskuhl and Dr. Anna Shah
08-04-2024
Episode 345: A Deep Dive into Women's Health and MS with Dr. Rhonda Voskuhl and Dr. Anna Shah
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 345 Guests: Dr. Rhonda Voskuhl and Dr. Anna Shah Privacy Policy
Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini
01-04-2024
Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ STUDY: Multiple Sclerosis Endophenotypes Identified by High-Dimensional Blood Signatures are Associated with Distinct Disease Trajectories https://science.org/doi/10.1126/scitranslmed.ade8560 STUDY: High-Efficacy Therapy Discontinuation vs Continuation in Patients 50 Years and Older with Nonactive MS https://jamanetwork.com/journals/jamaneurology/article-abstract/2816799 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 344 Guest: Professor Sergio Baranzini Privacy Policy
Episode 343: Progressive MS Day with Kevin Reid
25-03-2024
Episode 343: Progressive MS Day with Kevin Reid
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com 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 https://youtu.be/eWoZLF4bZmo 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 https://www.youtube.com/watch?v=UtGtCnNkYOY 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 https://www.youtube.com/watch?v=J83jlqMbsZo 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 https://www.youtube.com/watch?v=_fRLW69Xc1A 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 https://www.youtube.com/watch?v=oZDdp8JumFg VIDEO: ACTRIMS Forum 2024 Webcast Replays https://actrims.memberclicks.net/forum-patient-centered-webinars 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 https://pubmed.ncbi.nlm.nih.gov/35432382 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 343 Guest: Kevin Reid Privacy Policy
Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed
18-03-2024
Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index 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 https://youtu.be/eWoZLF4bZmo 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 https://www.youtube.com/watch?v=UtGtCnNkYOY 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 https://www.youtube.com/watch?v=J83jlqMbsZo 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 https://www.youtube.com/watch?v=_fRLW69Xc1A 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 https://www.youtube.com/watch?v=oZDdp8JumFg VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS https://www.youtube.com/watch?v=W4hxtl38MBQ The TEAAMS Study https://projectteaams.ahs.uic.edu Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 342 Guests: Chiquita Shepard-Knight and Earl Sneed Privacy Policy
Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha
11-03-2024
Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 341 Guest: Dr. Shiv Saidha Privacy Policy
Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham
04-03-2024
Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 340 Guest: Dr. Deborah Backus and Dr. Brad Willingham Privacy Policy
Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson
26-02-2024
Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784 STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway  https://journals.sagepub.com/doi/10.1177/13524585241231665 STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning https://link.springer.com/article/10.1007/s00415-023-12132-z SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services https://clinicbyclevelandclinic.com/consumer-perceptions-report STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 339 Guest: Professor Alan Thompson Privacy Policy
Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern
19-02-2024
Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society: Become an MS Activist https://nationalmssociety.org/advocacy PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee  https://realtalkms.com/280 RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis https://realtalkms.com/193 WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research https://www.msif.org/treatments-webcast/ Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 338 Guest: Steffany Stern Privacy Policy
Episode 337: Aging With MS with Dr. Aaron Boster
12-02-2024
Episode 337: Aging With MS with Dr. Aaron Boster
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?  How do we know whether a new symptom is a symptom of MS or a symptom of aging? Does an additional age-related health condition make treating MS more difficult? Does treating MS make treating that new health condition more difficult? How can we best offset the social isolation that's often associated with MS and with aging? 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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 337 Guest: Dr. Aaron Boster Privacy Policy
Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq.
05-02-2024
Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq.
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509 STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register https://journals.sagepub.com/doi/10.1177/13524585231221411 STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States https://www.neurology.org/doi/10.1212/WNL.0000000000207916 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 336 Guest: Jamie Hall, Esq. Privacy Policy
Bonus Episode: MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne
01-02-2024
Bonus Episode: MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne
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, Professor Alice Laroni and Rachel Horne join me to explore  what happens at the time someone receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis.  We're also exploring what should be happening at the time of diagnosis and what needs to come next. Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy. Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology. Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster
29-01-2024
Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Contact an MS Navigator Phone: 1-800-344-4867 Web via chat: https://nationalmssociety.org Email: contactusnmss@nmss.org STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study  https://journals.sagepub.com/doi/10.1177/17562864231170928 Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoencephalopathy_genetic_risk_variants_for_pharmacovigilance_of_immunosuppressive_therapies No Cost PML Risk Genetic Test https://pmlrisktest.org STUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation https://www.nature.com/articles/s41593-023-01553-8 Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023 https://www.sciencedirect.com/science/article/pii/S2173580824000191 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 335 Guest: Christina Forster Privacy Policy
Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek
22-01-2024
Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume https://pubmed.ncbi.nlm.nih.gov/38214757 Myrobalan Therapeutics  https://myrotx.com STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis  https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969 The Mark Cuban Cost Plus Drug Company https://costplusdrugs.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 334 Guest: Carla Turechek Privacy Policy
Episode 333: Improving Communication Between You and Your Neurologist with Dr. Luis Manrique-Trujillo
15-01-2024
Episode 333: Improving Communication Between You and Your Neurologist with Dr. Luis Manrique-Trujillo
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations https://www.nature.com/articles/s41586-023-06618-z STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells https://pnas.org/doi/abs/10.1073/pnas.2315857121 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 333 Guest: Dr. Luis Manrique-Trujillo Privacy Policy
Episode 332: Managing the Cost of Generic, Biosimilar, and Other Prescription Medications with Robin LaRue
08-01-2024
Episode 332: Managing the Cost of Generic, Biosimilar, and Other Prescription Medications with Robin LaRue
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Dairy and Gluten in Disease Activity in Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/20552173231218107 STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study https://sciencedirect.com/science/article/abs/pii/S1936657423001310?via%3Dihub STUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study https://journals.sagepub.com/doi/full/10.1177/13524585231213258 STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial https://meridian.allenpress.com/ijmsc/article/25/6/252/495534/Effect-of-2-Arm-Intervention-on-Emotional-Outcomes International Progressive MS Alliance https://progressivemsalliance.org Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 332 Guest: Robin LaRue Privacy Policy
Episode 331: Becoming a Donor to the National MS Brain Bank with Dr. Claire Riley
01-01-2024
Episode 331: Becoming a Donor to the National MS Brain Bank with Dr. Claire Riley
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com The National Multiple Sclerosis Brain Bank https://msbraindonation.org Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 331 Guests: Dr. Claire Riley Privacy Policy
Episode 330: Revisiting How the Proposed Framework for Researching, Diagnosing, and Treating MS Will Affect You with Prof. Tanja Kuhlmann and Dr. Tim Coetzee
25-12-2023
Episode 330: Revisiting How the Proposed Framework for Researching, Diagnosing, and Treating MS Will Affect You with Prof. Tanja Kuhlmann and Dr. Tim Coetzee
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 330 Guests: Prof. Tanja Kuhlmann and Dr. Tim Coetzee Privacy Policy
Episode 329: Revisiting the Pathways To Cures Global Summit
18-12-2023
Episode 329: Revisiting the Pathways To Cures Global Summit
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 Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Learn more about Pathways To Cures https://www.nationalmssociety.org/pathways-to-cures Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 329 Guests: Cyndi Zagieboylo, Nick Moberly, Klaus Hom, Rohan Greenland, Dr. Pamela Valentine, Dr. Tim Coetzee, Kathy Smith, Dr. Anna-Katrin Probstel, Dr. Naila Makhami, Dr. Daniel Ontaneda, Dr. Mitzi Joi Williams Privacy Policy