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.
In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker. One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And Dee's initial DM led to my conversation with Dee and the inventor of the Alinker, a true difference-maker, BE Alink. The National MS Society's 3rd annual Hispanic/Latinx MS Experience Summit is just two days away! We're sharing all the details, including how you can register for this free virtual event. And I'm sharing my thoughts following attending the University of Pittsburgh's bi-annual caregiver research conference. We have a lot to talk about! Are you ready for RealTalk MS??! The Hispanic/Latinx MS Experience Summit is two days away! :22 Don't miss our ECTRIMS Extra Conversations 1:38 Thoughts following attending the caregiver research conference at the University of Pittsburgh 2:15 Dee and BE discuss all things Alinker (including how you can get yours!) 9:26 Share this episode 37:02 Have you downloaded the free RealTalk MS app? 37:23 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/371 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 Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience MS Care Partner Connection https://mscarepartnerconnection.com The Alinker https://thealinker.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 371 Guests: Dee Ecklund and BE Alink Privacy Policy
10/7/24 • 38:35
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen 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 Ontario, Canada. Dr. Oh is also the Principal Investigator in Gemini, the Phase 3 clinical trial for Tolebrutinib and relapsing-remitting MS. At ECTRIMS, Dr. Oh shared the outcome of the Gemini clinical trial. 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/ectrims244 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 ECTRIMS Extra Guest: Dr. Jiwon Oh Privacy Policy
10/3/24 • 08:06
In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in Episode 125 of RealTalk MS. The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In Episodes 297and 298 of RealTalk MS, I shared news and interviews from what I described as yet another historic meeting. The Pathways to Cures Research Roadmap has been updated, and I'm devoting this week's episode of RealTalk MS to my conversation with the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and the MS Society's Vice-President of Global Initiatives, Shawna Golden, to bring us up to date on how this global MS research initiative has been refined and enhanced and how it's resetting the global MS research agenda. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The Pathways to Cures research roadmap has been updated :22 Dr. Bruce Bebo and Shawna Golden discuss the refined and enhanced Pathways to Cures research roadmap 2:34 Share this episode 29:58 Have you downloaded the free RealTalk MS app? 30:18 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/370 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 RealTalk MS Episode 125: From the Pathways to Cures Think Tank https://realtalkms.com/125 RealTalk MS Episode 297: From the Pathways to Cures Global Summit (Part 1) https://realtalkms.com/297 RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298 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 370 Guests: Dr. Bruce Bebo, Shawna Golden Privacy Policy
9/30/24 • 31:34
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen 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. Peter Calabresi. Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine. He is the principal investigator on several clinical trials and oversees research projects focused on developing new anti-inflammatory and neuroprotective therapies for MS. At ECTRIMS, Dr. Calabresi co-chaired what was probably the most highly anticipated presentation at this year's conference: the unveiling of updated criteria for diagnosing 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/ectrims243 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 ECTRIMS Extra Guest: Dr. Peter Calabresi Privacy Policy
9/28/24 • 09:04
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen 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 Rachel Horne and Professor Kerstin Hellwig. Professor Kerstin Hellwig is the 2024 recipient of the Rachel Horne Prize for Women's Research in MS. Professor Hellwig was honored at ECTRIMS for her pioneering research into understanding and navigating the safety of approved treatments for women with MS before, during, and after pregnancy. Professor Hellwig is a senior consultant at St Josef Hospital, Ruhr University, Bochum, Germany, specializing in MS and neuroimmunology, and is a leading clinician-scientist in the field of MS and family planning. 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/ectrims242 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 ECTRIMS Extra Guests: Rachel Horne, Professor Kerstin Hellwig Privacy Policy
9/25/24 • 11:48
ECTRIMS 2024, the largest MS research conference in the world concluded last week, and in this week's episode, we'll be hearing two slightly different perspectives on which news, announcements, and presentations stood out at this year's meeting. The ECTRIMS conference can feel almost overwhelming. You find yourself among 9 or 10 thousand other attendees, trying to determine which of the more than 1700 scientific presentations you want to learn more about. It's both a marathon and a sprint that seem to be taking place simultaneously. Kristine Werner Ozug is a member of the RealTalk MS team and a person who lives with MS. This week, Kristine shares her perspective on attending ECTRIMS for the first time. At the conclusion of ECTRIMS, you can almost hear a collective sigh coming from all the attendees. It feels like you've crossed the finish line, but now the work of sorting and processing all that you've seen, heard, and read over what feels like a non-stop 72-hour blur actually begins. Joining me to share his initial thoughts on the ECTRIMS news that caught his eye is the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: ECTRIMS 2024 :22 It's our 7th anniversary! 1:28 Kristine Werner Ozug shares a patient's perspective on attending the largest MS research conference in the world 3:56 Dr. Bruce Bebo shares the news and announcements that caught his eye at ECTRIMS 17:19 Share this episode 28:59 Have you downloaded the free RealTalk MS app? 29:19 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/369 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 369 Guests: Kristine Werner Ozug, Dr. Bruce Bebo Privacy Policy
9/23/24 • 30:32
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen 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. Fred Lublin. Dr. Fred Lublin is the Director of the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai. He participated in the development of the very first disease-modifying therapy that was approved for MS. When we talk about relapsing-remitting MS, secondary-progressive MS, or primary-progressive MS, we're using the clinical course descriptions of MS that were developed and subsequently updated by Dr. Lublin and his colleagues. At ECTRIMS, Dr. Lublin gave a presentation on the need to update the way we think about and talk about multiple sclerosis by, once again, updating those clinical course descriptors. 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/ectrims241 ADD YOUR VOICE TO THE CONVERSATI 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 ECTRIMS Extra Guest: Dr. Fred Lublin Privacy Policy
9/21/24 • 07:26
Living with the unpredictability of MS sometimes feels like riding a rollercoaster. As you experience the twists and turns of life with MS, you can sometimes feel unmoored from the person you thought you were. You can sense your priorities, motivations, and values shifting. And, in those moments, it becomes easy to lose your sense of purpose. Clinical assistant professor and rehabilitation psychologist at the University of Michigan, Dr. Evan Smith, joins me to discuss how to identify and reconnect with your core values and live a more purposeful and satisfying life. We'll also tell you about Creating Order, an art exhibit featuring 12 artists living with MS. (Don't miss our conversation with the co-curators and lead artist in this unique exhibit!) And we're sharing the details of MS Stand Up, a night of comedy and cocktails at the Gotham Comedy Club. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Greetings from ECTRIMS! :22 Our 7th anniversary is one week away! 2:00 Coming Up: The importance of staying connected to your core values 2:30 Creating Order art exhibit features 12 artists living with MS 3:35 My conversation with Creating Order co-curators Pam Schoenberg and Ted Meyer, and lead artist, Susan Trachman 4:27 MS Stand Up is happening September 30 at the Gotham Comedy Club 15:24 Dr. Evan Smith discusses how to lead a purposeful life while living with MS 16:54 Share this episode 33:17 Have you downloaded the free RealTalk MS app? 33:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/368 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 Creating Order exhibit at the DNJ Gallery https://dnjgallery.net MS Stand Up https://msstandup.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 368 Guests: Pam Schoenberg, Ted Meyer, Susan Trachman, Dr. Evan Smith Privacy Policy
9/16/24 • 34:50
Living with MS is expensive. A recent study funded by the National MS Society found the average cost of living with MS in the United States is $88,487 a year. Even with insurance, that can turn out to be a heavy lift. One thing you don't need is to be worrying about money while you're already worrying about MS. So, when I think about discussing budgeting and managing your personal finances when you're living with MS, I think we're really talking about preserving your quality of life. Joining me with strategies for budgeting and managing debt when you're living with MS is the Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary. We'll also tell you about the updated Pathways to Cures Research Roadmap and the first ever global landscape analysis of MS research funding. We're sharing very encouraging results from the Phase 2 open-label extension study of Fenebrutinib, an experimental BTK inhibitor. We'll give you the details of a pilot study that demonstrated what may be a successful treatment for sexual dysfunction among men and women living with MS. We'll tell you why middle-aged people with MS may want to consider resistance training. And we'll tell you how to register for the National MS Society's Voting Without Barriers webinar. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Budgeting for Living with MS :22 The Pathways to Cures Research Roadmap has been updated and refined 1:25 There's very encouraging news from the Phase 2 open-lable extension study of Fenebrutinib 5;31 Results from a pilot study point to successful treatment for sexual dysfunction among men and women living with MS 6:35 Study results show that resistance training is beneficial for middle-aged people with MS 9:52 We're 8 weeks away from election day in the U.S. and the National MS Society is hosting a webinar about access to polling places 11:36 Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary, shares tips and strategies for taming your household budget and budgeting for living with MS 15:49 Share this episode 33:16 Have you downloaded the free RealTalk MS app? 33:36 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/367 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 RealTalk MS Episode 297: From the Pathways To Cures Global Summit (Part 1) https://realtalkms.com/297 RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298 The Refined Pathways To Cures Research Roadmap https://journals.sagepub.com/doi/10.1177/13524585241266483 The First Global Landscape Analysis of Multiple Sclerosis Research Funding https://journals.sagepub.com/doi/full/10.1177/13524585241265961 STUDY: Tibial Nerve Stimulation in the Management of Primary Sexual Dysfunction in Patients with Multiple Sclerosis: A Pilot Randomized Control Trial https://link.springer.com/article/10.1007/s10072-024-07687-2 STUDY: Is Resistance Training an Option to Improve Functionality and Muscle Strength In Middle-Aged People with Multiple Sclerosis? A Systematic Review and Meta-Analysis https://www.mdpi.com/2077-0383/13/5/1378 REGISTER for the Voting Without Barriers Webinar https://p2a.co/Dqy1Xpk 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 367 Guest: Bruce McClary Privacy Policy
9/9/24 • 34:46
Most of us know Medicare as health insurance for Americans who are 65 or older, but when they qualify for Social Security disability benefits, people younger than 65 automatically qualify for Medicare. Today, between 25 and 30% of the people living with MS are Medicare beneficiaries. Whether you already have Medicare or you'll be signing up for Medicare in the future, getting the right coverage requires making some important choices. Licensed Medicare Advisor Laquel Thomas joins me with tips, strategies, and explanations for successfully navigating Medicare and getting the coverage you need. We’re explaining the good news in the results from a Phase 3 clinical trial for Tolebrutinib, Sanofi’s experimental oral BTK inhibitor. The trial showed that, compared to placebo, Tolebrutinib met the primary endpoint, delaying the onset of confirmed disability progression in people with non-relapsing secondary progressive MS. Take My Hand is an Australian film based on the true story of Claire Jensz, a mother of three living in London who is diagnosed with MS at the peak of her high-powered career. Be sure to catch my conversation with Claire, Radha Mitchell, the film's star, and John Raftopoulos, the film's director. We're sharing the details of a study that may have uncovered an underlying cause of MS and, perhaps, all autoimmune diseases. We'll tell you about the results of a stem cell study that show MS may involve more than just immune cells. And we'll give you what may be surprising details of a study that focused on how MS impacts the quality of life of fully ambulatory people living with mild MS symptoms. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Making the right Medicare choices :22 There's good news about the results of the Phase 3 clinical trial for Tolebrutinib 1:41 My conversation with the director, star, and woman whose story about living with MS is the real-life basis for the new film, Take My Hand 4:28 Have researchers at Yale discovered an underlying cause of MS? 14:11 Newly published results of a stem cell study show that MS may also be driven by brain cells 17:19 Study results show how MS impacts the quality of life among fully ambulatory people with mild MS symptoms 19:15 Licensed Medicare Advisor, Laquel Thomas, explains all the variables you want to consider in making choices about your Medicare coverage 22:12 Share this episode 33:40 Have you downloaded the free RealTalk MS app? 34:01 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/366 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 TRAILER: Take My Hand https://youtu.be/PdNMb7-AeEs STUDY: An Autoimmune Transcriptional Circuit Drives FOXP3+ Regulatory T-Cell Dysfunction https://www.science.org/doi/10.1126/scitranslmed.adp1720 STUDY: Patient iPSC Models Reveal Glia-Intrinsic Phenotypes in Multiple Sclerosis https://www.sciencedirect.com/science/article/abs/pii/S1934590924002881 STUDY: Determinants of Self-Perceived Quality of Life in Mildly Disabled Multiple Sclerosis Patients: A Cross-Sectional Study https://pubmed.ncbi.nlm.nih.gov/38526763 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 366 Guest: Claire Jensz, John Raftopolous, Radha Mitchell, Laquel Thomas Privacy Policy
9/2/24 • 35:13
If you're a regular listener, you know that I rely on the RealTalk MS listener community to let me know which topics you'd like to hear about on this podcast. A few years ago, in episode 264, listener Dawnia Baynes did a podcast takeover, and interviewed me. Since then, I've heard from a bunch of you who, for some reason, want to hear more about me. So, when listener Kyra Millich asked if she could interview me, it felt like it was time. In today's episode, you'll find out what I like to do when I'm not doing this podcast, I'll share some of the most memorable moments in my life, you'll hear how and why I started RealTalk MS, and I hope you'll get to know me a little better. You'll also hear about results from a study that show people with MS are far less likely to be diagnosed with Alzheimer's disease compared to people who don't have MS. We'll tell you about a Phase 1 clinical trial for a CAR-T cell therapy for MS. And you'll learn the details of a different Phase 1 clinical trial for a different CAR-T cell therapy for MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Jon gets interviewed :22 Study results show people with MS are less likely to get Alzheimer's disease than people who don't have MS 1:23 TG Therapeutics announces Phase 1 clinical trial of CAR-T cell therapy for MS 3:44 FDA clears Immpact Bio for Phase 1 clinical trial of CAR-T cell therapy for hard-to-treat MS 7:13 Listener Kyra Millich interviews Jon 8:48 Share this episode 40:03 Have you downloaded the free RealTalk MS app? 40:23 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/365 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: Unexpected Low Rate of Amyloid-β Pathology in Multiple Sclerosis Patients https://onlinelibrary.wiley.com/doi/10.1002/ana.27027 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 365 Privacy Policy
8/26/24 • 41:35
Getting an MS diagnosis is not always the quick, straightforward process we'd like it to be. For some people, the process can drag on for years. But getting that diagnosis only happens when you and your primary care physician recognize that something's going on. It might be a sudden vision issue. Maybe it's unexplained tingling in an arm or leg. Or maybe it's something more acute that gets your attention. A wide variety of signs could point to MS, but they could also point to other health conditions. Dr. Leorah Freeman, Director of the Multiple Sclerosis and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin, joins me this week to help us better understand the signs and symptoms of multiple sclerosis. Just as COVID-19 viral activity is increasing across the United States, we're sharing the results of a study that should put your mind at ease and motivate you to get that COVID-19 booster vaccination when it becomes available next month. We'll tell you about a Phase 1 clinical trial that's getting underway for a novel cell therapy that may be effective in stopping MS. You'll hear about a grant from the National Institutes of Health that will fund a study on the fear of falling among people with MS. The 16th annual Burgers to Beat MS fundraising event is taking place on August 22nd at A&W locations across Canada. We'll give you the details on how you can participate -- whether you happen to be in Canada or not! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Understanding the signs and symptoms of MS :22 Study results show no increase in the risk of an MS relapse after COVID-19 vaccination booster 1:43 Phase 1 clinical trial of a novel cell-based therapy for MS is underway 4:12 NIH grant to investigate the fear of falling among people with MS 7:13 Burgers to Beat MS is happening at A&W locations across Canada on August 22nd! 9:28 Dr. Leorah Freeman discusses the sometimes confusing signs and symptoms of MS 11:09 Share this episode 28:36 Have you downloaded the free RealTalk MS app? 28:56 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/364 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: Risk of Relapse After COVID-19 Vaccination Among Patients with Multiple Sclerosis in France https://www.neurology.org/doi/10.1212/WNL.0000000000209662 Burgers to Beat MS https://burgerstobeatms.ca 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 364 Guest: Dr. Leorah Freeman Privacy Policy
8/19/24 • 30:09
For some people, getting in their car and heading for, well, anywhere represents freedom and independence. For others, it's a way to get to their jobs, get to their medical appointments, get the kids to school, and run necessary errands. MS can change all of that. Occupational Therapist and Certified Driver Rehabilitation Specialist Jenny Nordine joins me to discuss how to preserve your independence while protecting yourself and the people around you when you're driving with MS. You'll also meet Dr. Susan Seizer, a true difference-maker and one of the founders of the Mobility Aids Lending Library. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Maintaining your independence and keeping yourself and others around you safe when you're driving with MS :22 Dr. Susan Seizer discusses the Mobility Aids Lending Library and the stigma of disability 1:26 Occupational Therapist and Certified Driver Rehabilitation Specialist, Jenny Nordine, discusses how to preserve your independence while protecting yourself and the people around you when you're driving with MS 20:35 Share this episode 31:25 Have you downloaded the free RealTalk MS app? 31:45 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/363 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 Mobility Aids Lending Library https://mcpl.info/commorg/mobility-aids-lending-library-mall 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 363 Guest: Dr. Susan Seizer, Jenny Nordine OT/L, CDRS Privacy Policy
8/12/24 • 32:57
Integrative medicine brings conventional and complementary treatments together in a coordinated way. This approach to health and wellness represents a growing trend across the United States, especially among people who live with a chronic disease like MS. Dr. Lynne Shinto joins me to explain what integrative medicine is and how to safely incorporate complementary treatments into your MS care plan. We'll also tell you about study results that show how the common cold, flu, or a urinary tract infection can all contribute to MS worsening. We'll tell you about the research team that has successfully used an artificial intelligence algorithm to predict future MS disability progression. We'll share the details behind the work of another research team that successfully used an artificial intelligence algorithm to reliably diagnose MS. The European Union's AI Act went into effect last week. We're explaining all the ways this new law will impact healthcare. We have a lot to talk about! Are you ready for RealTalk MS??! Remembering June Halper :22 This Week: Decoding Integrative Medicine 1:58 STUDY: Infections outside the central nervous system contribute to MS worsening 2:42 STUDY: Artificial intelligence model reliably predicts future MS disability progression 5:33 STUDY: Artificial intelligence model uses retinal imaging to reliably diagnose MS 7:51 How the European AI Act will impact healthcare 10:33 Dr. Lynne Shinto discusses the role of Integrative Medicine in treating MS 14:55 Share this episode 28:49 Have you downloaded the free RealTalk MS app? 29:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/362 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: Systematic Inflammation Associates With and Precedes Cord Atrophy in Progressive Multiple Sclerosis https://academic.oup.com/braincomms/article/6/3/fcae143/7655554 STUDY: Longitudinal Machine Learning Modeling of MS Patient Trajectories Improves Predictions of Disability Progression https://pubmed.ncbi.nlm.nih.gov/34146771 STUDY: SLO-NET: Enhancing Multiple Sclerosis Diagnosis Beyond Optical Coherence Tomography Using Infrared Laser Reflectance Scanning Ophthalmoscopy Images https://tvst.arvojournals.org/article.aspx?articleid=2800432 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 362 Guests: Dr. Lynne Shinto Privacy Policy
8/5/24 • 29:33
Less than two weeks ago, the National MS Society announced the appointment of Dr. Tim Coetzee as its new President and CEO. The MS Society's board chair, Peter Porrino, commented, "Tim is a trusted voice of the global MS community, a highly respected scientist, and we are excited for him to bring his transformative leadership to drive us into our next era to achieve a world free of MS." I thought it was important for everyone in the RealTalk MS listener community to hear from Tim and learn firsthand what his vision and priorities are for the MS Society. So, I'm dedicating this entire episode to my conversation with the new President and CEO of the National MS Society, Dr. Tim Coetzee. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: A conversation with the new President and CEO of the National MS Society, Dr. Tim Coetzee :22 Share this episode 28:32 Have you downloaded the free RealTalk MS app? 28:52 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/361 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 361 Guest: Dr. Tim Coetzee Privacy Policy
7/29/24 • 30:23
It's hard to imagine any area of our lives that hasn't been transformed by digital technology. That's certainly true for healthcare in general and MS diagnosis and treatment in particular. Dr. Riley Bove joins me to discuss the role that digital technology already plays in the diagnosis and treatment of MS and to share a preview of what's coming next. The National MS Society has named its new President and CEO. We're sharing the details! We'll tell you about some of the benefits that are being observed in the Phase 2 clinical trial and extension study of Frexalimab, an experimental antibody that may be on the path to becoming a highly effective disease-modifying therapy. We'll share the details behind the FTC's planned lawsuit against the three largest Pharmacy Benefit Managers (and we'll tell you why that matters to anyone taking a prescription medication). Stressing out about an upcoming MRI exam? We're sharing info about Happy MRI, a website that's been designed to relieve MRI-related anxiety. And we're reminding you that Crush MS, the Napa Valley wine-tasting fundraising event, is happening this Saturday, July 27th. We'll let you know where to get your ticket! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The impact of digital technology :22 Dr. Tim Coetzee named the President and CEO of the National MS Society 1:50 Frexalimab shows significant benefits in Phase 2 clinical trial 4:08 FTC to file suit against three largest Pharmacy Benefit Managers 6:08 Happy MRI is designed to relieve MRI-related anxiety 8:03 We're just days away from Crush MS 9:47 Dr. Riley Bove discusses how digital technology is changing MS diagnosis and treatment 11:21 Share this episode 28:54 Next week: Newly named President and CEO of the National MS Society, Dr. Tim Coetzee, talks about his vision for the MS Society and shares his immediate priorities 29:14 Have you downloaded the free RealTalk MS app? 29:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/360 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 RealTalk MS Episode 359: The Unraveling with Dr. Nara Michaelson https://realtalkms.com/359 Happy MRI https://happymri.com CRUSH MS https://crushms.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 360 Guests: Dr. Riley Bove Privacy Policy
7/22/24 • 30:44
As Harvard Fellow Dr. Nara Michaelson treated women who had been recently diagnosed with MS, she recognized they shared characteristics that she had observed in victims of violent domestic abuse. Dr. Michaelson's observation led her to write The Unraveling, an essay that highlights the fear that can accompany the uncertainty of living with MS. Dr. Michaelson joins me to discuss the experiences that led to her award-winning essay and to share resources that can help maintain your emotional health and well-being in a good place when you're living with MS. We're also sharing the details about BEAT-MS, a clinical trial that will compare autologous hematopoietic stem cell transplantation (AHSCT) with high-efficacy disease-modifying therapies when it comes to reducing or eliminating MS relapse activity. And we'll let you know how to find out if you could be a potential participant in this important clinical trial. We'll tell you about the FDA approval granted to Abata Therapeutics to conduct a Phase 1 clinical trial of ABA-101, their experimental therapy for progressive MS. We're sharing news about the Federal Trade Commission's newly released report on Pharmacy Benefit Managers. (And we'll tell you why this matters to every person in the United States who takes a prescription medication) And we'll tell you about Take Charge, a new virtual program from Can Do MS that you can participate in at no cost! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The Unraveling :22 BEAT-MS clinical trial compares AHSCT with high-efficacy DMTs 1:58 FDA clears ABA-101 for Phase 1 clinical trial 5:17 FTC is turning its focus to Pharmacy Benefit Managers 6:55 Can Do MS offers new Take Charge virtual program 11:47 Dr. Nara Michaelson discusses her award-winning essay, The Unraveling 13:23 Share this episode 29:15 Next week: Dr. Riley Bove discusses how digital technology has become a game-changer in diagnosing, treating, and managing MS 29:35 Have you downloaded the free RealTalk MS app? 29:55 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/359 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 Unraveling https://neurology.org/doi/10.1212/WNL.0000000000209492 BEAT-MS Clinical Trial https://beat-ms.org RealTalk MS Episode 205: A Potentially Transformational Therapy for Progressive MS with Samantha Singer and Dr. Richard Ransohoff https://realtalkms.com/205 FTC Report -- Pharmacy Benefit Managers: The Powerful Middlemen Inflating Drug Costs and Squeezing Main Street Pharmacies https://ftc.gov/system/files/ftc_gov/pdf/pharmacy-benefit-managers-staff-report.pdf REGISTER for Take Charge https://cando-ms.org/event/take-charge-young-and-newly-diagnosed 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 359 Guests: Dr. Nara Michaelson Privacy Policy
7/15/24 • 31:06
The inequities associated with gaining access to quality healthcare are often discussed, and my guest this week has taken steps to address them. Dr. Jaime Imitola and his team at UCONN Health have created a tool called VISIBL-MS, a bilingual framework designed to increase doctors' and patients' awareness of the early signs of MS. We'll also share the results of a study that clearly illustrate progression independent of relapse activity (PIRA). We'll tell you about a small study that showed a positive outcome for people with progressive MS who received neural stem cell therapy. We'll share details of a study that identified a panel of 20 blood-based proteins that have been shown to be predictive of MS disease activity. (And we'll tell you why that's a good thing for patients and researchers!) And we're reminding you that we're just over 2 weeks away from CRUSH MS! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: VISIBL-MS :22 Study results provide evidence of PIRA 1:41 Stem cell therapy for progressive MS? 4:28 Researchers identify a panel of 20 proteins that are predictive of MS disease activity 7:19 We're just over 2 weeks away from CRUSH MS! 10:07 Dr. Jaime Imitola discusses how VISIBL-MS will increase doctors' and patients' awareness of the early signs of MS. 11:35 Share this episode 31:33 Have you downloaded the free RealTalk MS app? 31:53 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/358 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 VISIBL-MS: A Bilingual Educational Framework To Increase Awareness of Early Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/13524585241228739 STUDY: Acute Clinical Events Identified as Relapses with Stable Magnetic Resonance Imaging in Multiple Sclerosis https://pubmed.ncbi.nlm.nih.gov/38949816 STUDY: Phase I Clinical Trial of Intracerebroventricular Transplantation of Allogeneic Neural Stem Cells in People with Progressive Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1934590923003934 STUDY: Inflammatory and Neurodegenerative Serum Protein Biomarkers Increase Sensitivity to Detect Clinical and Radiographic Disease Activity in Multiple Sclerosis https://nature.com/articles/s41467-024-48602-9 CRUSH MS: Tickets and Info https://crushms.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 358 Guests: Dr. Jaime Imitola Privacy Policy
7/8/24 • 33:06
When it comes to living your best life when you're living with MS, the first step is to make smart lifestyle choices. Maintaining a healthy lifestyle doesn't require pills, injections, or infusions. And making smart lifestyle choices can make a real, measurable difference in your quality of life. Joining me to talk about the benefits of maintaining a healthy lifestyle and share some tips and strategies for living your best life when you're living with MS is Dr. Lisa Doggett, a family and lifestyle medicine physician at the MS and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin. Dr. Doggett was diagnosed with MS in 2009, and she’s the author of the memoir, ‘Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis’. We'll also tell you about a research team that's looking to improve the way that stem cells are transplanted -- and why that's a good thing for people with MS. We'll share the details behind the European Union's approval of a new Ocrevus formulation that makes the DMT much more patient-friendly. You'll hear about the blood test for measuring a biomarker that can predict future MS disease worsening that has just gained approval in the European Union. And we'll tell you where to find the video replay of Mobility Challenges in Progressive MS, the most recent webcast hosted by the International Progressive MS Alliance. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Lifestyle changes that will improve your quality of life :22 Researchers receive a grant to develop a better way to transplant stem cells 1:30 Subcutaneous Ocrevus has been approved in the European Union 3:50 Blood test to measure a biomarker that can predict future MS disease worsening receives approval in the European Union 5:35 Catch the video replay of the latest Progressive MS Alliance webcast 7:13 Dr. Lisa Doggett offers strategies for making lifestyle choices that will make a difference in your quality of life 8:20 Share this episode 26:50 Next Week: Dr. Jaime Imitola introduces us to VISIBL-MS 27:10 Have you downloaded the free RealTalk MS app? 27:39 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/357 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 REPLAY of the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://youtube.com/watch?v=YGA-2k9JCLg&t=14s 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 357 Guests: Dr. Lisa Doggett Privacy Policy
7/1/24 • 28:51
Over the course of her 39-year career with the National MS Society, including the past 13 years as its President and CEO, Cyndi Zagieboylo has been a driving force behind major initiatives that have fundamentally changed the MS treatment and research landscape. Creating a world where cures for MS are now within reach, Cyndi has led the work to make living with MS better today than it's ever been. On July 1, Cyndi is retiring from her remarkable career at the National MS Society. I had an opportunity to talk with Cyndi about the progress she's witnessed and the progress she has driven in leading the MS Society. It's been a career filled with so many moments that are worthy of celebration, I am devoting this entire episode of RealTalk MS to one last conversation with Cyndi Zagieboylo. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: A final conversation with the National MS Society's President and CEO, Cyndi Zagieboylo :22 A look back at some of the most impactful initiatives that were led by Cyndi 1:43 Share this episode 30:39 Next Week: Lifestyle medicine physician Dr. Linda Doggett shares tips and strategies for making healthy lifestyle choices that will improve your quality of life 31:00 Have you downloaded the free RealTalk MS app? 31:50 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/356 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 356 Guest: Cyndi Zagieboylo Privacy Policy
6/24/24 • 33:04
Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home. My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry. We'll also tell you about the latest version of AlphaFold, a highly advanced artificial intelligence model designed to help scientists design new drugs and target disease more effectively. Evidence shows that the Epstein-Barr Virus (EBV) triggers MS. We're reviewing the results of a study that may help scientists better understand the relationship between EBV and MS. The International Progressive MS Alliance upcoming webcast, Mobility Challenges in Progressive MS, takes place this Thursday, June 20th. Find out where you can register and why you won't want to miss this! And we're just 6 weeks away from Crush MS, a fundraising event in Napa Valley, California that raises money to support MS research. I'll be there, and I hope you can join me! We're sharing all the details. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The NARCOMS Patient Registry :22 The most advanced AI on earth is focused on discovering new medications 1:40 Researchers learn that Epstein-Barr Virus re-activates and drives inflammation during an MS relapse 4:00 The Progressive MS Alliance hosts a live global webcast this Thursday, June 20th! 7:17 Crush MS is just 6 weeks away 8:39 Dr. Robert Fox takes us on a deep dive into the NARCOMS patient registry 10:08 Share this episode 26:12 Next Week: A special conversation with National MS Society President and CEO, Cyndi Zagieboylo 26:33 Have you downloaded the free RealTalk MS app? 27:17 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/355 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 NARCOMS Patient Registry https://www.narcoms.org STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease https://nature.com/articles/s41564-024-01699-6 REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://msif.org/webcast-mobility Get Tickets for Crush MS https://www.crushms.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 355 Guests: Dr. Robert Fox Privacy Policy
6/17/24 • 28:29
Two weeks ago, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. This is Part 2 of our coverage from that meeting. In this episode, we're sharing our conversations with some of the experts who were at the meeting to present their research. You'll hear the National MS Society's Executive Vice President for Advocacy and Healthcare Access, Bari Talente, share her thoughts on why getting early support when you've been diagnosed with MS can make a difference in how you begin your MS journey. Dr. Nancy Sicotte talks about why early diagnosis and treatment are important in ensuring the best long-term patient outcomes. Dr. Brian Sandroff asks and answers the question, "Does exercise improve cognitive function in MS?" And Dr. Anthony Feinstein shares what he and his team have learned about how cannabis impacts people with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part 2 of our coverage of the CMSC Annual Meeting :22 National MS Society Executive Vice President for Advocacy and Healthcare Access, Bari Talente, discusses the importance of finding early support when you've been diagnosed with MS 1:18 Dr. Nancy Sicotte explains why early diagnosis and treatment make a difference in MS 8:57 Dr. Brian Sandroff poses (and answers) the question, "Doe exercise improve cognitive functioning in MS?" 17:11 Dr. Anthony Feinstein shares evidence gathered from his team's research into how cannabis impacts MS 23:58 Share this episode 38:13 Next Week: The North American Research Committe on Multiple Sclerosis (NARCOMS) with Managing Director, Dr. Robert Fox 38:34 Have you downloaded the free RealTalk MS app? 38:54 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/354 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 RealTalk MS Episode 353: From the Consortium of MS Centers 38th Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger https://realtalkms.com/353 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 354 Guests: Bari Talente, Dr. Nancy Sicotte, Dr. Brian Sandroff, Dr. Anthony Feinstein Privacy Policy
6/10/24 • 40:05
Last week, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. Welcome to Part 1 of our coverage from that meeting. In this episode, I'm talking with Dr. Kathy Zackowski, Associate Vice-President for Research at the National MS Society, and Dr. Zackowski is sharing some of the presentations that caught her attention. Next, you'll hear my conversation with Dr. Stephen Krieger, a neurologist at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis. Dr. Krieger explains the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're reporting from the CMSC Annual Meeting :22 Dr. Kathy Zackowski shares some of the presentations that caught her attention 1:14 Dr. Stephen Krieger discusses the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal 18:56 Share this episode 33:36 Next Week: Part 2 of our coverage from the CMSC Annual Meeting 33:56 Have you downloaded the free RealTalk MS app? 34:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/353 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 353 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger Privacy Policy
6/3/24 • 35:42
May 30th is World MS Day, and we're taking this opportunity to look at some of the challenges faced by people with MS around the world. Global economics and the peculiarities of different healthcare systems make fundamental issues like access to quality healthcare and affordable MS medications difficult for many and impossible for some. U.K. journalist and MS activist Rachel Horne joins me for a freewheeling conversation focused on the broad range of challenges that people with MS face every day. We're also sharing details about the National MS Society's Black MS Experience Summit, which gets underway June 12th and 13th. Find out why you'll want to be part of this free virtual event. We have a lot to talk about! Are you ready for RealTalk MS??! The National MS Society's Black MS Experience Summit is happening June 12th and 13 :24 This Week: World MS Day is May 30th 2:07 Rachel Horne talks about some of the issues confronting people with MS around the world 8:10 Share this episode 26:51 Have you downloaded the free RealTalk MS app? 27:11 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/352 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 Black MS Experience Summit https://www.nationalmssociety.org/resources/get-support/education-programs-and-library/black-ms-experience World MS Day https://worldmsday.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 352 Guests: Rachel Horne Privacy Policy
5/27/24 • 28:23
We've reached a moment in time when it seems impossible to avoid at least some level of stress in our lives. We also know that stress has been shown to make MS symptoms worse and even trigger relapses. We can't eliminate all the stress in our lives, so learning how to manage and minimize stress is an important part of living well with MS. This week, Dr. Grace Tworek, a Clinical Health Psychologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, joins me to talk about best practices when it comes to managing stress when you're living with MS. We're also sharing details about the $649,000 grant made by the National MS Society to support the development of an experimental remyelination treatment. If MS is detected early -- before an individual experiences even a single symptom -- and that individual is treated aggressively with a high-efficacy disease-modifying therapy, could that individual lead a life without experiencing any symptoms of MS? We'll tell you how that scenario is playing out right now. We'll tell you about research that revealed differences in the connections between nerve cells in the brain based upon biological sex. And we'll share survey results that show people with MS may be so embarrassed about some of their symptoms that they aren't discussing them with their care team. We have a lot to talk about! Are you ready for RealTalk MS??! The complexity of the human brain :22 This Week: Managing stress when you're living with MS 2:08 National MS Society invests $649,000 in experimental remyelination treatment 2:57 Stopping MS before symptoms start 4:32 Study shows that connections between nerve cells vary by biological sex 6:30 Are people with MS too embarrassed to discuss some of their symptoms with their care team? 8:31 Dr. Grace Tworek discusses strategies to manage stress when you're affected by MS 11:44 Share this episode 27:27 Have you downloaded the free RealTalk MS app? 27:47 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/351 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 A Browsable Petascale Reconstruction of Human Cortex https://h01-release.storage.googleapis.com/landing.html STUDY: Deep Learning with Diffusion MRI as In Vivo Microscope Reveals Sex-Related Differences in Human White Matter Microstructure https://www.nature.com/articles/s41598-024-60340-y 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 351 Guests: Dr. Grace Tworek Privacy Policy
5/20/24 • 29:01
There are more than 20 disease-modifying therapies available to treat MS today. Some are considered high-efficacy, some are considered moderately effective, and each has its own risk profile and side effects to consider. So, how do you choose? How much homework should someone living with MS do? Where should you look for reliable information? And what if you and your neurologist don't necessarily agree? Joining me to talk about your role when it comes to choosing the right DMT through shared decision-making with your neurologist is Dr. Barbara Giesser. Dr. Giesser is an internationally recognized clinician and award-winning educator who has specialized in the care of people with multiple sclerosis since 1982, a full decade before there was even a single disease-modifying therapy available to treat MS. Dunk MS takes place This Saturday, May 18th on the UCLA campus, at iconic Pauley Pavilion. And if you're in or around Southern California, you won't want to miss this unique event. We're sharing all the details, so don't miss my conversation with Dunk MS founder, Blake Arnet. Since we're talking about shared decision-making this week, we're sharing details of a study that asked the question, "How much do people living with MS know about MS?" And if you've found yourself worried about smoldering MS, you'll be pleased to learn that a recent study showed that sophisticated PET imaging is able to identify this hidden, persistent inflammation in MS. We have a lot to talk about! Are you ready for RealTalk MS??! 350 Episodes! :22 This Week: Finding the right DMT through shared decision-making 1:04 Dunk MS is just days away! My conversation with Blake Arnet 2:31 How much do people living with MS know about MS? 10:57 PET imaging reveals persistent hidden inflammation in MS 15:37 Dr. Barbara Giesser discusses choosing the right disease-modifying therapy through shared decision-making with your neurologist 20:04 Share this episode 33:13 Have you downloaded the free RealTalk MS app? 33:33 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/350 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 Get Your Tickets for Dunk MS https://dunkms.com STUDY: A Systematic Review to Explore Patients' MS Knowledge and MS Risk Knowledge https://link.springer.com/article/10.1007/s10072-024-07541-5 STUDY: Glial Activity Load on PET Reveals Persistent "Smoldering" Inflammation in MS Despite Disease-Modifying Treatment https://journals.lww.com/nuclearmed/fulltext/2024/06000/glial_activity_load_on_pet_reveals_persistent.1.aspx 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 350 Guests: Blake Arnet and Dr. Barbara Giesser Privacy Policy
5/13/24 • 34:45
As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently. Just a couple of weeks ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how these many and varied changes can impact MS care. In Part 2 of our coverage, we're taking you back inside this workshop, where you'll hear from some of the top MS researchers and clinicians who participated in this important meeting. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We continue our coverage of the Aging and MS Workshop :22 Dr. Sarah Morrow and Dr. Yinan Zhang discuss survey results which showed what neurologists and other members of the MS care team see as "gaps" in delivering treatment to patients as they age with MS 1:45 Dr. Giuseppe Portillo describes how artificial intelligence can be used to analyze "brain gap" and predict future MS disease progression 13:03 Dr. John Corboy shares results from two studies that focused on discontinuation of disease-modifying therapy for patients over the age of 60 20:31 Kathy Smith talks about the importance of including older people living with MS in clinical research 31:00 Share this episode 42:43 Have you downloaded the free RealTalk MS app? 43:03 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/349 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 RealTalk MS Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) http://www.realtalkms.com/348 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 349 Guests: Dr. Sarah Morrow, Dr. Yinan Zhang, Dr. Giuseppe Portillo, Dr. John Corboy, and Kathy Smith Privacy Policy
5/6/24 • 44:15
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 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 348 Guests: Dr. Tim Coetzee, Dr. Jennifer Graves, Dr. Wallace Brownlee, Dr. Amit Bar-Or Privacy Policy
4/29/24 • 29:34
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 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: An Autoantibody Signature Predictive of Multiple Sclerosis https://www.nature.com/articles/s41591-024-02938-3 RealTalk MS Episode 346: Why Members of Minority Communities May Face a More Severe MS Disease Course with Dr. Annette Langer-Gould https://realtalkms.com/346 STUDY: ChatGPT vs Neurologists: A Cross-Sectional Study Investigating Preference, Satisfaction Ratings, and Perceived Empathy in Responses Among People Living with Multiple Sclerosis https://link.springer.com/article/10.1007/s00415-024-12328-x 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 347 Guest: Dr. Ellen Mowry Privacy Policy
4/22/24 • 33:38
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
4/15/24 • 33:04
