Explorez tous les épisodes du podcast RealTalk MS
| Titre | Date | Durée | |
|---|---|---|---|
| Episode 366: Medicare and MS -- Getting Your Ducks In a Row with Laquel Thomas | 02 Sep 2024 | 00:35:13 | |
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 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 STUDY: An Autoimmune Transcriptional Circuit Drives FOXP3+ Regulatory T-Cell Dysfunction STUDY: Patient iPSC Models Reveal Glia-Intrinsic Phenotypes in Multiple Sclerosis STUDY: Determinants of Self-Perceived Quality of Life in Mildly Disabled Multiple Sclerosis Patients: A Cross-Sectional Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 366 | |||
| Episode 365: It's the Episode Where I Get Interviewed with Jon Strum | 26 Aug 2024 | 00:41:35 | |
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 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 Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 365 | |||
| Episode 356: A Final Conversation with National MS Society President and CEO, Cyndi Zagieboylo | 24 Jun 2024 | 00:33:04 | |
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 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 356 | |||
| Bonus Episode: MS in the 21st Century -- Are We Nearly There Yet? Achieving Freedom from Disease | 15 Dec 2022 | 00:38:04 | |
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century. In this special episode of RealTalk MS, I'm joined by Professor Peter Rieckmann, Stanca Potra, and Maria Paz Giambastiani. We're taking a look back at the advances that have been made in treating MS and focusing our eyes ahead to determine the work that still needs to be done. Professor Rieckmann is the Chief Physician of Neurology and Clinical Neuroplasticity at the Medical Park Loipl, Germany. Professor Rieckmann has also served as the Chair of the MS in the 21st Century initiative since its inception in 2011. Maria Paz Giambastiani has been living with MS for the past 17 years. She's a columnist, writing about disability and inclusion for More Than Words magazine. Maria has also authored several books and publications focused on MS. Stanca Potra is the founder of the Smile Center, a support and counseling center for people living with MS in Romania. Stanca has been living with MS for the past 9 years. Professor Rieckmann, Stanca, and Maria are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com. | |||
| Episode 276: ECTRIMS Research Update Part 2 with Dr. Bruce Bebo | 12 Dec 2022 | 00:36:56 | |
Some of you might remember that at the end of October, I was in Amsterdam, attending the 2022 ECTRIMS Congress. ECTRIMS is an acronym for the European Committee for Treatment and Research in Multiple Sclerosis, and their annual scientific congress is the largest MS research conference in the world. As the conference ended, I sat on some steps outside the conference center alongside the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo. And Dr. Bebo shared his initial impressions of some of the research that had been presented over the 3-day conference. If you missed that episode of the podcast, you may want to listen to episode number 270 of RealTalk MS After having had a few weeks to consider all of the research that was presented at the ECTRIMS Congress, Dr. Bebo is back to share his final ECTRIMS research update, and talk about the rest of the research that caught his attention at the 2022 ECTRIMS Congress. You'll also meet the Co-Chair of the MS Society Southern California chapter's Emerging Leaders Board and this year's recipient of the Dorothy Corwin Spirit of Life Award, Kristen Karasek. Kristen was diagnosed with MS at the age of 24, but, as will become clear to you, she hasn't let MS get in her way. I think you'll find Kristen's positivity to be infectious. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part Two of our 2022 ECTRIMS research roundup with Dr. Bruce Bebo :22 My conversation with the Co-Chair of the MS Society Southern California Chapter's Emerging Leaders Board and Dorothy Corwin Spirit of Life recipient, Kristen Karasek 1:37 The National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, discusses the research that caught his attention at the largest MS research conference in the world 16:20 Share this episode 35:21 Download the free RealTalk MS app 35:41 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/276 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Episode 270: From the 2022 ECTRIMS Congress with Dr. Bruce Bebo Take the iConquer MS Caregiver Survey Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 276 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 275: Choosing the Right Disease-Modifying Therapy with Ross Tingen, PharmD, BCPS, MSCS | 05 Dec 2022 | 00:28:20 | |
The first step in living well with MS is establishing a treatment plan with your neurologist or MS specialist. And a disease-modifying therapy, or DMT, should be the foundation of that plan. Joining me to talk about what disease-modifying therapies can and can't do, and how to work with your doctor to find the best MS medication for you is the Clinical Pharmacy Specialist in Multiple Sclerosis and Neuroimmunology at VCU Health in Richmond Virginia, Ross Tingen. Why are we talking about global warming on a podcast about MS? Because we're talking about the results of a study that show how climate change has a negative impact on people living with multiple sclerosis and other neurological conditions. We're also sharing the results of a study that demonstrate the sobering reality of the association between socioeconomic status and death among people living with MS. If you're on Tecfidera, you'll want to hear about a study that focused on how alcohol may change the efficacy of your DMT. And we'll tell you about a study that revealed significant differences in how the prodromal phase of MS affects men and women at different ages. (And we'll also tell you why understanding the MS prodrome is important!) We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How to find the best MS medication for you :22 Study shows climate change impacts people living with MS 1:08 Study examines the impact of socioeconomic status on death among people with MS 3:28 Study shows alcohol dulls the metabolism of Tecfidera 7:01 Study analyzes differences due to sex and age in the MS prodrome 8:35 Ross Tingen discusses how to work with your doctor to find the best disease-modifying therapy for you 18:40 Share this episode 27:19 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/275 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Impacts of Climate Change and Air Pollution on Neurologic Health, Disease, and Practice: A Scoping Review Tremlett's MS Research Explained: Low Socioeconomic Status Was Associated with a Higher Mortality Risk in Multiple Sclerosis Explained STUDY: Low Socioeconomic Status Was Associated with a Higher Mortality Risk in Multiple Sclerosis STUDY: Alcohol Inhibits the Metabolism of Dimethyl Fumarate to the Active Metabolite Responsible for Decreasing Relapse Frequency in the Treatment of Multiple Sclerosis Tremlett's Research Explained: Sex and Age Differences in the Multiple Sclerosis Prodrome Explained STUDY: Sex and Age Differences in the Multiple Sclerosis Prodrome Explained Take the iConquer MS Caregiver Survey Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 275 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Bonus Episode: MS in the 21st Century -- The Impact of Cognitive Symptoms on Employment | 30 Nov 2022 | 00:25:22 | |
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century. In this special episode of RealTalk MS, we're talking with Professor Dawn Langdon and David Yeandle about the impact of MS-related cognitive issues on employment. Professor Langdon is a Professor of Neuropsychology with a special interest in cognition at the Royal Holloway University of London, in the United Kingdom. Professor Langdon is also a Trustee of the MS Trust in the U.K. David Yeandle was diagnosed with MS in 2010. David was a Head of Employment for a major organization in the U.K., and he's a passionate advocate for helping people living with MS stay employed. Both Professor Langdon and David are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com. | |||
| Episode 274: Disaster Preparedness for People Living with MS with Mary Casey-Lockyer | 28 Nov 2022 | 00:32:25 | |
A quick scan of the news on any given day should remind all of us that natural disasters can strike anywhere at any time. Whether it's massive snowstorms, earthquakes, wildfires, hurricanes or floods, no one is immune when Mother Nature chooses to act up. That's why being prepared for a natural disaster is important for everyone. And if you're living with MS, it's especially important for you to have your family's emergency preparedness plan in place. Senior Medical Advisor to National Disaster Operations at the American Red Cross, Mary Casey-Lockyer, joins me to talk about the things that people living with MS should include in their emergency preparedness plan. We're also talking with Dr. Aaron Kesselheim, a researcher at Harvard's Brigham and Women's Hospital. And if you're on Lemtrada, Dr. Kesselheim could use your help. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Disaster Preparedness :22 If you're on Lemtrada, Dr. Aaron Kesselheim could use your help 1:43 Mary Casey-Lockery discusses disaster preparedness for people living with MS 10:49 Share this episode 31:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/274 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 274 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 273: Spasticity and MS with Dr. Michelle Cameron | 21 Nov 2022 | 00:35:00 | |
Spasticity is one of the most common symptoms of MS, impacting up to 80% of the people living with MS. It can feel like mild muscle tightness that you wish would just go away or it can be so painful and debilitating that it keeps you from moving. Dr. Michelle Cameron joins me in this episode to discuss what spasticity is and how to best manage it. Dr. Cameron is a neurologist and physical therapist, a professor in the Department of Neurology at Oregon Health & Science University, Interim Chief of Neurology at the VA Portland Healthcare System, and Co-Director of the VA MS Center of Excellence West. We're also talking about a new framework for thinking and talking about MS that's been proposed by an international panel of MS experts. We'll tell you about a study that looked at polypharmacy and MS (Of course, we'll also tell you what polypharmacy is and why you should be aware of it!) We'll share the details around the discovery of human antibodies that have been shown to prevent Epstein-Barr infection (And we'll explain why this could be incredibly important) If you're an MS caregiver, or you know one, I'm asking for just 5 minutes of your time. We're celebrating National Caregivers Month by breaking down the details of the National Family Caregiving Strategy that was recently submitted to Congress. And we're celebrating the indomitable quality of the human spirit by sharing the story of Eric Domingo Roldan and his mom, Sylvia. We have a lot to talk about! Are you ready for RealTalk MS??! Thanksgiving is two days away! :22 This Week: Managing Spasticity 1:02 Experts propose a new framework for thinking about and talking about MS 2:07 Polypharmacy and MS 5:55 Researchers identify antibodies that prevent Epstein-Barr Virus infection 9:02 If you're an MS caregiver, or you know one, can I have 5 minutes of your time? 11:30 The 2022 National Family Caregivig Strategy 13:55 Eric Domingo Roldan and his mom, Sylvia, make it into the Guinness Book of World Records 16:34 Dr. Michelle Cameron discusses spasticity and MS 18:40 Share this episode 33:55 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/273 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Multiple Sclerosis Progression: Time for a New Mechanism-Driven Framework Tremlett's MS Research Explained: Polypharmacy and Multiple Sclerosis: A Population-Based Study STUDY: Polypharmacy and Multiple Sclerosis: A Population-Based Study RealTalk MS Episode 229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi RealTalk MS Episode 231: Evidence Shows EBV Triggers MS: Understanding the Impact of this Breakthrough Research with Dr. Bruce Bebo STUDY: Epstein-Barr Virus gH/gL Has Multiple Sites of Vulnerability for Virus Neutralization and Fusion Inhibition Take the iConquer MS Caregiver Survey 2022 National Strategy to Support Family Caregivers Eric Domingo Roldan's Instagram Handle Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 273 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 272: Live from the National MS Society Leadership Conference with Lori Turley and Dr. Brad Zuchero | 14 Nov 2022 | 00:34:51 | |
This week's episode of RealTalk MS was recorded in front of a LIVE audience at the National MS Society's 2022 Leadership Conference. Joining me in this special episode are Lori Turley, who was diagnosed with MS in 2021, and whose commitment to fundraising and advocacy is already producing dividends, and Dr. Bradley Zuchero, an MS Society-funded research fellow whose lab has discovered the biological mechanism that produces myelin in our central nervous system. In addition to my questions, our audience has questions for my guests, as well! We have a lot to talk about! Are you ready for RealTalk MS??! We're LIVE from the National MS Society's 2022 Leadership Conference in Dallas, Texas :23 MS Society volunteer Lori Turley talks about her fundraising and advocacy efforts, and why they're important 1:38 MS Society-funded research fellow, Dr. Bradley Zuchero, talks about his lab's discovery of the mechanism that brain cells use to produce myelin 13:20 Our live audience has questions for Dr. Zuchero and Lori 22:11
SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/272 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 272 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 271: Acupuncture and MS with Jennifer Mohr-Boscaino and Ken Bandler | 07 Nov 2022 | 00:30:33 | |
When we talk about managing MS on this podcast, we're usually talking about treatments based upon traditional Western medicine. But there are also complementary therapies that have been shown to improve MS symptoms. And acupuncture is one of those complementary therapies that's been shown to be effective in treating pain, spasticity, numbness or tingling, bladder problems, and depression. Joining me to talk about the therapeutic effects of acupuncture in treating MS symptoms are Jennifer Mohr-Boscaino and Ken Bandler. Jennifer is a licensed acupuncturist and the founder of Precious Health Acupuncture in New York, and Ken is a public relations executive who lives with MS and receives acupuncture treatment for his MS symptoms. We're also talking about how a large MS clinical trial has been able to increase minority participation, and how other MS research studies may be able to learn from this example. We'll tell you about a study that showed the benefit of COVID-19 mRNA vaccinations and boosters for people living with MS who are on b-cell depleting therapies, like Ocrevus. And if you're an MS caregiver, or you know one, I'm asking for a favor that will cost you just 5 minutes of your time. We have a lot to talk about! Are you ready for RealTalk MS??! Next Week: RealTalk MS recorded LIVE at this week's National MS Society 2022 Leadership Conference :22 Today: It's Election Day in the U.S. Please vote! :41 Your Question Answered: How Big is the ECTRIMS Congress? 1:30 This Week: Acupuncture and MS 3:01 Pragmatic trials may increase minority participation in MS research 4:03 Research supports COVID-19 mRNA vaccination and booster for people with MS on Ocrevus 7:10 If you're an MS caregiver, or you know one, please help me out 10:26 Jennifer Mohr-Boscaino and Ken Bandler discuss the benefits of acupuncture for managing some MS symptoms 14:04 Share this episode 29:02 Download the RealTalk MS app for your iOS or Android device 29:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/271 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey National MS Society: Your Right to Vote and Polling Place Accessibility DELIVER-MS Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 271 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 270: From the 2022 ECTRIMS Congress with Dr. Bruce Bebo | 31 Oct 2022 | 00:22:16 | |
Last week, over 7,000 MS researchers and clinicians from more than 100 countries traveled to Amsterdam to attend the 2022 ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) Congress, the largest MS research conference in the world. As has become an annual ECTRIMS tradition on RealTalk MS, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and I took up our vantage point on the steps right outside of the convention center to discuss the research that captured Dr. Bebo's attention. We have a lot to talk about! Are you ready for RealTalk MS??! Greetings from the 2022 ECTRIMS Congress! :22 If you're listening in the U.S., don't forget to vote next Tuesday 1:26 Dr. Bruce Bebo shares the research that captured his attention at ECTRIMS 3:25 Share this episode 20:43 Download the RealTalk MS app for your iOS or Android device 21:03 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/270 ADD YOUR VOICE TO THE CONVERSATION I've always thought of the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey National MS Society: Your Right to Vote and Polling Place Accessibility Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 270 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 269: How and When the Inflation Reduction Act Will Affect The Price of Your MS Medications with Steffany Stern and Judy Wilson | 24 Oct 2022 | 00:35:08 | |
A couple of months ago, the Inflation Reduction Act was signed into law. And while it touches on many different areas, it will be remembered as the most consequential healthcare bill since the Affordable Care Act. From the emails I've received, I know that many of you are wondering how and when this new law will impact what you pay for your prescription medications. The National MS Society's Vice-President of Advocacy, Steffany Stern, and MS activist Judy Wilson, join me in this episode to explain how this new law benefits people who are living with MS, who, among everyone living with MS, will see some of those benefits first, and when you will begin to see those benefits. We're also talking about a study that showed people with progressive MS are four times more likely to experience serious infection requiring hospitalization, compared to people with relapsing-remitting MS. We'll tell you about a machine-learning algorithm that can predict MS patient outcomes when it comes to symptoms like fatigue, depression, and sleep disturbance. And we'll share some very sobering survey results from the MS Society in the U.K. We have a lot to talk about! Are you ready for RealTalk MS??! Greetings from Amsterdam! ECTRIMS kicks off this week! :22 This Week: How the Inflation Reduction Act Will Help You 1:02 People with primary progressive MS are 4 times more likely to experience serious infection 2:12 An app plus artificial intelligence predicts MS patient outcomes 5:03 The MS Society in the U.K. releases sobering survey results 9:33 MS Society V.P. of Advocacy Steffany Stern and MS activist Judy Wilson break down the specific benefits of the Inflation Reduction Act 12:17 Share this episode 33:36 Download the RealTalk MS app for your iOS or Android device 33:56 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/269 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey National MS Society: Become an MS Activist STUDY: Serious Infection in Patients with Relapsing and Progressive Forms of Multiple Sclerosis: A German Claims Data Study STUDY: Predicting Multiple Sclerosis Outcomes During COVID-19 Stay-at-Home Period: Observational Using Passively Sensed Behaviors and Digital Phenotyping Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 269 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 355: The NARCOMS Patient Registry with Dr. Robert Fox | 17 Jun 2024 | 00:28:29 | |
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 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 STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS Get Tickets for Crush MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 355
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| Episode 268: What You Need to Know About Open Enrollment with Nicole Vasquez | 17 Oct 2022 | 00:34:04 | |
If you're on Medicare, or you get your health insurance through the healthcare.gov marketplace or one of the state health insurance exchanges, then you might already know that the annual open enrollment period is about to get underway or, in some cases, is already underway. Health insurance policies change. Physician networks change. Drug formularies often change. Deductibles change. And if you're living with MS, you can't afford to go through open enrollment assuming that the health insurance policy you have this year will be the best coverage for you next year. Nicole Vasquez returns to the podcast to discuss the things you should carefully consider during open enrollment. Nicole is one of the National MS Society's MS Navigators and she'll be sharing information and resources that you can use to make the best health insurance decisions for yourself and your family. Can you spare 5 minutes? I have a quick favor to ask each of you. I'll also tell you about the Supreme Court decision that, for now, clears the way for Gilenya generics. You'll hear about a new cell therapy being developed that will use nanotechnology to eliminate Epstein-Barr Virus (and I'll remind you why that would be a massive step forward in ending MS). And we'll tell you about a University of Illinois research team that leveraged artificial intelligence to predict MS by observing how people walk. We have a lot to talk about! Are you ready for RealTalk MS??! Sharing some listener feedback :22 This Week: Open enrollment 3:06 Will you do me a quick favor? 5:06 Supreme Court clears the way for Gilenya generics 7:25 Cell therapy will use nano-technology to eliminate EBV 8:25 Research team uses AI to identify people living with MS 10:55 MS Navigator Nicole Vasquez gets you ready for open enrollment 13:57 Share this episode 32:32 Download the RealTalk MS app for your iOS or Android device 32:52 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/269 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey STUDY: A Vision-Based Framework for Predicting Multiple Sclerosis and Parkinson's Disease Gait Dysfunctions -- A Deep-Learning Approach Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 268 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 267: All You Need to Know About Vaccines and MS with Dr. Lisa Doggett | 10 Oct 2022 | 00:34:57 | |
It's flu season and that makes it an excellent time to talk about vaccines. People living with MS often have questions about whether a particular vaccine is good for them or whether it might carry with it the risk of a relapse or other negative health consequence. Dr. Lisa Doggett joins me to brief us on all things related to vaccines and MS. Dr. Doggett is a family doctor as well as the Senior Medical Director at HGS AxisPoint Health. She was a 2021-2022 American Academy of Family Physicians Vaccine Science Fellow, and Dr. Doggett has lived with MS since being diagnosed in 2009. I'm also sharing my major take-away from the 2022 National Conference on Caregiving Research. And, speaking of caregiving, we'll review the results of a study that measured the risk of family caregivers experiencing future illness and disability. You're going to want to hear the results of a study that measured the effects of a keto diet on people living with MS. And we'll tell you what researchers learned when they analyzed the effect of autologous hematopoietic stem cell transplantation (aHSCT) on tissue damage in the central nervous system (And we'll explain why that may be really important!). We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Vaccines and MS :22 Caregiving as a social determinant of health 1:37 Family caregivers carry a significantly higher risk of future illness and disability 5:52 The effects of a ketogenic diet on people living with MS 8:57 The impact of autologous hematopoietic stem cell therapy (aHSCT) on tissue damage in the central nervous system 11:49 Dr. Lisa Doggett discusses which vaccines are important for people living with MS, and which vaccines should be avoided 17:30 Share this episode 33:23 Download the RealTalk MS app for your iOS or Android device 33:44 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/267 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS The National Strategy to Support Family Caregivers STUDY: Caregiving and Allostatic Load Predict Future Illness and Disability: A Population-Based Study STUDY: Phase II Study of Ketogenic Diets in Relapsing Multiple Sclerosis: Safety, Tolerability, and Potential Clinical Benefits STUDY: Biomarkers of Demyelination and Axonal Damage are Decreased After Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 267 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 266: Making Life with MS Easier with Dr. Kathy Zackowski | 03 Oct 2022 | 00:38:29 | |
Living with MS can make everyday run-of-the-mill tasks like bathing, cooking, and driving more challenging than they have to be. The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, joins me with a whole list of simple adjustments and easy modifications that you can make that will make the things you do every day easier. Get ready to take some notes! A lot of you have reached out to me, sharing your thoughts about Selma Blair competing on Dancing with the Stars. Collectively, your opinions illustrate the vast diversity of opinion regarding Selma's latest adventure. In this week's episode, I'm sharing some of my thoughts. I've always said that MS doesn't affect individuals -- it affects families. This week, we're talking about a study that focused on anxiety, depression, and stress communication between people living with MS and their partners. We'll also tell you about a study that makes the case for using artificial intelligence to accurately predict EDSS scores for people living with MS. And we'll tell you about a drug that's been studied in clinical trials for cancer that may also show promise as a remyelination therapy. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Selma Blair on DWTS, I'm back from the 2022 Caregiving Research Conference, and simple adjustments & minor modifications that can make life with MS easier :22 Researchers analyzed anxiety, depression, and stress communication in couples affected by MS 3:28 Can artificial intelligence predict an individual's EDSS score as accurately as their neurologist? 7:37 Repurposing a drug that's been studied in clinical trials for cancer may be a step forward in remyelination for people living with MS 12:27 Dr. Kathy Zackowski returns to the podcast with a boatload of simple adjustments and minor modifications that can make managing your everyday tasks a lot easier 15:38 Share this episode 36:55 Download the RealTalk MS app for your iOS or Android device 37:16 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/266 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: Psychosocial Impact of Multiple Sclerosis on Couples: Relationship Between Anxiety, Depression, and Stress Communication of Both Partners STUDY: Validation of a Machine-Learning Approach to Estimate Expanded Disability Status Scale Scores for Multiple Sclerosis STUDY: Inhibition of Chk2 Promotes Neuroprotection, Axon Regeneration, and Functional Recovery After CNS Injury Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 266 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 265: Making MS Research Accessible to People Affected by MS and Why That Matters with Sharon Roman | 26 Sep 2022 | 00:33:36 | |
Living with MS comes with its own set of sometimes significant challenges. But being in the dark, unaware of the noteworthy and remarkable advances being made in MS research is one challenge that we're learning to overcome. Sharon Roman is a patient-partner and writer for the British Medical Journal Group. Sharon lives with MS and she also writes a blog called Tremlett's MS Research Explained. The blog features plain-English posts detailing the research being done by Professor Helen Tremlett and her team. Professor Tremlett is the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia. Sharon joins me to talk about Professor Tremlett's pioneering research on the prodromal phase of MS, and to discuss why it's important to make MS research accessible and understandable to everyone in the MS community. We're also sharing study results that show the key to reducing MS fatigue could be a trip to the gym. We'll tell you about a study that measured improvements in physical disability, fatigue, and health-related quality of life among people with MS after they received stem cell therapy. We'll tell you about the significant differences in the gut microbiome of people living with MS and what that might mean for potential new treatments. We'll tell you about a study that discovered an interesting difference in immune cells among people living with MS. And we'll explain the riddle this poses for scientists. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The importance of making MS research accessible to people affected by MS :22 A study shows that high-intensity resistance training improves MS fatigue 2:44 A study measures the long-lasting benefits of aHSCT for people living with MS 6:31 A study identifies differences in specific bacteria levels in the gut microbiome of people living with MS 9:59 A study reveals differences in immune cells among people living with MS 13:22 Sharon Roman discusses the importance of making MS research accessible to people affected by MS 18:43 Share this episode 32:04 Download the RealTalk MS app for your iOS or Android device 32:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/265 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Tremlett's MS Research Explained STUDY: High-Intensity Resistance Training in People with Multiple Sclerosis Experiencing Fatigue: A Randomised Controlled Study STUDY: Impact of Autologous HSCT on the Quality of Life and Fatigue in Patients with Relapsing Multiple Sclerosis National MS Society: aHSCT and MS STUDY: Gut Microbiome of Multiple Sclerosis Patients and Paired Household Controls Reveal Associations with Disease Risk and Course STUDY: Broader Epstein-Barr Virus-Specific T Cell Receptor Repertoire in Patients with Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 265 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 264: It's Our 5-Year Anniversary with CNN's John King and a Dawnia Baynes Takeover | 19 Sep 2022 | 00:39:40 | |
We're celebrating the 5th anniversary of RealTalk MS and we're kicking it off with my exclusive conversation with CNN national correspondent and anchor, John King. John was diagnosed with MS in 2008. However, John didn't disclose his diagnosis until 2021 -- in an unplanned moment on national television. John shares his MS journey from the day he was diagnosed through his unplanned disclosure. And he also shares a message for anyone who is newly diagnosed with MS. Then, we're doing something completely different! You won't want to miss the second half of this special 5th anniversary episode when listener Dawnia Baynes takes over RealTalk MS -- and interviews Jon! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're celebrating our 5th anniversary! :22 My exclusive conversation with CNN's John King 4:22 Welcome to the Dawnia Baynes Takeover! 23:10 Share this episode 38:08 Download the RealTalk MS app for your iOS or Android device 38:28 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/264 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 264 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 263: Managing Your Mental Health When You're Living With MS with Dr. Dawn Ehde | 12 Sep 2022 | 00:32:39 | |
In addition to its physical symptoms, MS can also affect your emotional well-being. Depression, persistent anxiety, and extreme irritability are common. And, just like the physical symptoms of MS, they require treatment. But people living with MS tend to focus on their physical health and, too often, end up neglecting their mental health. Dr. Dawn Ehde joins me to talk about maintaining and strengthening your emotional well-being when you're living with MS, and she'll introduce you to a new resource that you're going to want to know about. This Thursday, the National MS Society is hosting the virtual Hispanic/Latinx MS Experience Summit. The event is free and the sessions will be available in both English and Spanish. We're sharing the details and we'll tell you how and where to register. We'll tell you about a study that compared how low-efficacy and high-efficacy disease-modifying medications impacted brain atrophy and disease activity. We'll share study results that showed how choosing to be on disease-modifying medications affected mortality. And we'll tell you about a study that focused on how MS impacts your ability to show up at work. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Managing your mental health :22 The Hispanic/Latinx MS Experience Summit takes place this Thursday, Sept 15. Here's how to register 2:20 A study compares low-efficacy and high-efficacy disease-modifying medications 3:40 A study assesses the association between being on a disease-modifying medication and surviving 7:39 A study shows that that people with MS miss work more than twice as much as healthy people 9:56 Dr. Dawn Ehde discusses how you can maintain and strengthen your emotional well-being and she introduces a new resource that you're going to want to know about 14:40 Share this episode 31:06 Download the RealTalk MS app for your iOS or Android device 31:27 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/263 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS What to Expect from Mental Health Care: A Guide for People with MS National MS Society Hispanic/Latinx MS Experience Summit STUDY: High-Efficacy Therapy Reduces Subcortical Grey Matter in Japanese Patients with Relapsing-Onset Multiple Sclerosis: A 2-Year Cohort Study STUDY: Disease-Modifying Drugs for Multiple Sclerosis and Association with Survival RealTalk MS Episode 211: The Ins and Outs of Employment with MS with Dr. Phillip Rumrill STUDY: Work Productivity Loss Among Adults Aged 18-64 Years with Multiple Sclerosis in the United States: A Propensity Score Matched Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 263 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 262: Making Shared Decision-Making Work For You with Dr. Marijean Buhse | 05 Sep 2022 | 00:32:11 | |
The conversation between a doctor and patient is evolving from a time when that conversation was often limited to the doctor prescribing a particular disease-modifying medication and the patient silently nodding their head in agreement to something much more closely resembling a real conversation. Shared decision-making offers the patient an opportunity to discuss their treatment goals, explain their risk tolerance, and talk about their comfort level with side effects. But not every neurologist, nurse practitioner, or MS specialist has made the transition to shared decision-making. Some haven't even heard of it. And some patients worry that shared decision-making means they have more work to do in preparing for an appointment with their healthcare provider. Dr. Marijean Buhse joins me to walk us through how shared decision-making works for people living with MS -- and what to do if it isn't working for you. We'll also tell you where you can catch the video replay of an MS Society webcast that explains how and when the new drug pricing law will impact the cost of your MS medications if you're on Medicare. We'll share the registration details for next week's Hispanic/Latinx MS Experience Summit We'll tell you about a new research collaboration between iConquer MS, the National MS Society, and Quest Diagnostics We'll share study results that point to a novel pathway to myelin repair. We'll share study results that indicate the rate of MS in a country may have less to do with latitude and sun exposure and more to do with healthcare spending. And we're giving a shout-out to A&W Canada and the MS Society of Canada for raising $1.8 million during the Burgers to Beat MS event. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How shared decision-making shapes your MS treatment plan :22 You can catch the replay of the MS Society's webcast or read the one-page "explainer" about how and when the new drug pricing law will impact your MS medications if you're on Medicare 2:47 The Hispanic/Latinx MS Experience Summit takes place on Sept 15. Here's how to register 3:41 iConquer MS teams up with the National MS Society and Quest Diagnostics for a study that will track the long-term effects of COVID-19 vaccines on b-cells and T-cells among people on anti-cd20 medications 5:14 A research team at Oregon Science & Health University are exploring a unique pathway to remyelination, with promising early results 7:41 A study shows that the rate of MS in different countries may have less to do with latitude and more to do with healthcare spending 11:57 Burgers to Beat MS beats its goal and raises $1.8 million dollars 15:06 Dr. Marijean Buhse discusses how shared decision-making works and what to do if it isn't working for you 16:45 Share this episode 30:38 Download the RealTalk MS app for your iOS or Android device 30:59 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/262 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS WEBCAST REPLAY: What Does the New Drug Pricing Law Mean for You? National MS Society Explainer: What Does the New Drug Pricing Legislation Mean for People with MS? National MS Society Hispanic/Latinx MS Experience Summit STUDY: A Modified Flavonoid Accelerates Oligodendrocyte Maturation and Functional Remyelination STUDY: Association of Multiple Sclerosis Prevalence With Sociodemographic, Health Systems, and Lifestyle Factors on a National and Regional Level Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 262 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 261: Service Dogs for People Living With MS with Trevor Hardy | 29 Aug 2022 | 00:37:54 | |
When you're living with MS, even the most mundane daily tasks can sometimes be challenging. There are days when opening a door, taking things out of a drawer or a cupboard, or picking something up from the floor can all seem out of reach. Those just happen to be some of the many tasks that a service dog can help you with. This week, attorney Trevor Hardy joins me to talk about the impact that his service dog, Tristan, has had on his life. We're also reviewing what you need to know about monkeypox and MS. We'll share the results from a Phase 3 clinical trial for Ublituximab, an investigational anti-cd20 therapy for MS. We'll talk with Dr. Roberto-Alfonso Dunn about the results of a study that he recently headed up at Tisch Multiple Sclerosis Research Center. And we'll share results from a study that attempted to identify specific factors at the time of diagnosis that could be predictive of future physical and mental health-related quality of life. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Study results and service dogs :23 Monkeypox and MS: What you need to know 1:13 Results from the Phase 3 clinical trial for Ublituximab 6:03 Study results offer potentially encouraging news for people with MS on b-cell depleting therapies 8:58 Clues at the time of diagnosis are shown to be predictive of future physical and mental health-related quality of life 17:20 Trevor Hardy discusses how his service dog, Tristan, has changed his life 24:33 Share this episode 36:22 Download the RealTalk MS app for your iOS or Android device 36:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/261 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Monkeypox and MS: What You Need to Know CDC: Monkeypox Vaccines STUDY: Ublituximab versus Teriflunomide in Relapsing Multiple Sclerosis STUDY: Physical and Mental Health-Related Quality of Life Trajectories Among People with Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 261 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 260: MS and Men with Dr. Robert Shin | 22 Aug 2022 | 00:32:28 | |
Women are roughly 3 times more likely to develop MS compared to men. But when men develop MS, they're more likely to experience a more aggressive disease course. Men are more likely to experience motor problems, loss of coordination and balance, and cognitive difficulties. When they experience a relapse, men are more likely to see their exacerbated symptoms continue, even during times of remission. Given these evidence-based observations, it seems sadly ironic that, as they develop MS symptoms, men are less likely to seek medical care or even a diagnosis. Dr. Robert Shin returns to the podcast to demystify some of the riddles surrounding men and MS. Dr. Shin is a Professor in the Department of Neurology at MedStar Georgetown University Hospital, and the Director of the Georgetown Multiple Sclerosis and Neuroimmunology Center. We're also sharing the registration details for the National MS Society's webcast, What Does the New Drug Pricing Law Mean to You?. The webcast takes place this Thursday, and you won't want to miss it. We'll tell you about a study that may have identified an imaging biomarker that can predict future MS progression. (And we'll explain why that can make a huge difference in your MS treatment plan) We'll share some discouraging news about the availability of Evusheld in the U.K. We'll point you toward Elizabeth Jameson's Washington Post editorial that explains how learning to swear can be therapeutic for someone living with progressive MS. And we'll share results from a Cleveland Clinic study that shows how a man's own definition of masculinity can get in the way of his MS treatment. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: MS and Men :22 Find out how and when the Inflation Reduction Act will impact the cost of your prescription drugs 1:41 Study demonstrates that thinning of retinal layers predicts future MS disability 2:35 U.K. opts not to buy Evusheld 5:17 Elizabeth Jameson learns the value of a well-intentioned F-bomb 6:35 Study shows how masculine ideals drive healthcare decisions for men with MS 8:39 Dr. Robert Shin discusses the specifics associated with Men and MS 12:52 Share this episode 30:56 Download the RealTalk MS app for your iOS or Android device 31:16 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/260 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Registration for National MS Society Webcast: What Does the New Drug Pricing Law Mean to You? STUDY: Retinal Thinning After Optic Neuritis is Associated with Future Relapse Remission in Relapsing Multiple Sclerosis Elizabeth Jameson in the Washington Post: How I Learned that Swearing Can Be Good for the Soul STUDY: Effects of Conformity to Masculine Norms and Coping on Health Behaviors in Men with Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 260 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 259: How Lack of Sleep Affects MS (and What You Can Do About it!) with Dr. Katie Siengsukon | 15 Aug 2022 | 00:37:21 | |
More than half of the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. Sleep-related problems can lead to additional health issues, not to mention an overall decline in quality of life and well-being. The Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, Dr. Katie Siengsukon, returns to the podcast to talk about how sleep affects MS and what you can do about it. We're also sharing all the ways the Inflation Reduction Act will benefit people living with MS. And we're celebrating the MS Activists who helped push this legislation through Congress! We have some good news to share about Mark Cuban's CostPlus Drug Company. We'll give you a quick review of where to find the show notes for each episode of RealTalk MS (and why you might want to do that!) We're sharing results from a study that demonstrated an important benefit for people with primary progressive MS who were treated with diseaes-modifying therapies. We'll tell you about two scientists who identified a combination of genes that increase a woman's risk of developing MS by 20 times. And we'll remind you that Burgers to Beat MS is happening this Thursday! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How Sleep impacts MS :22 All the ways the Inflation Reduction Act will benefit people living with MS 1:18 Mark Cuban's CostPlus Drug Company now carries the generic for Tecfidera 5:02 Where to find the show notes for every episode of RealTalk MS 9:53 Study results show that DMT use reduces the risk of wheelchair dependence for people with primary progressive MS 12:23 Researchers identify genetic mutations that increase the risk of a woman developing MS by 20 times 14:02 Burgers to Beat MS is happening Thursday! 17:48 Dr. Katie Siengsukon discusses how sleep impacts MS 19:42 Share this episode 35:48 Download the RealTalk MS app for your iOS or Android device 36:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/258 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Become an MS Activist Mark Cuban's CostPlus Drug Company STUDY: Disease-Modifying Treatments and Time to Loss of Ambulatory Function in Patients with Primary Progressive Multiple Sclerosis STUDY: X-Linked Genetic Risk Factors that Promote Autoimmunity and Dampen Remyelination are Associated with Multiple Sclerosis Susceptibility Burgers to Beat MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 259 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 354: From the Consortium of MS Centers 38th Annual Meeting -- Part 2 | 10 Jun 2024 | 00:40:05 | |
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 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 Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 354
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| Episode 258: Living with the Invisible Symptoms of MS with Kathy Costello | 08 Aug 2022 | 00:33:36 | |
One of the realities of living with MS is that you're often dealing with invisible symptoms. And because symptoms like numbness and tingling, fatigue, depression, vision issues, and pain aren't apparent to others, it can be hard for people around you to understand what MS is all about and, specifically, what you might be struggling with. Kathy Costello returns to the podcast to discuss how to best manage the invisible symptoms of MS and how you can constructively shut down those conversations that begin with, "But you look so healthy!". We're also sharing the results of a study that focused on the results of 50 different studies about the effects of autologous hematopoietic stem cell therapy (aHSCT) on people with MS. We'll tell you about the National MS Society's $19 million dollar investment in 40 new MS research projects. It's August, so we have to talk about Burgers to Beat MS! And we'll give you the details about how you can participate in testing a new product that combines technology and music to improve gait problems for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Living with the invisible symptoms of MS :22 A study of 50 studies about the effectiveness of aHSCT in treating MS 1:36 National MS Society invests $19 million in 40 new MS research projects 4:45 It's that time of year again...it's Burgers to Beat MS! 7:03 MedRhythms is asking for your help 8:15 Kathy Costello discusses the invisible symptoms of MS 9:57 Share this episode 32:04 Download the RealTalk MS app for your iOS or Android device 32:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/258 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Can Do MS aHSCT in MS Autologous Hematopoietic Stem Cell Transplantation in Multiple Sclerosis: A Systemic Review and Meta-Analysis National MS Society Invests $19 Million to Launch 40 New MS Research Projects to Drive Pathways to Cures Burgers to Beat MS For More Information about MedRhythms Volunteer Testing Program Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 258 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 257: Dating With MS with Alaya McKinney and Akeem McMichael | 01 Aug 2022 | 00:30:32 | |
Dating can be tricky for anyone. And it doesn't get any easier if you happen to be living with MS. In addition to all the typical dating considerations, you also have to think about things like if, how, and when to disclose your MS. You want to make sure your dating activities are physically doable. That might mean no long walks on the beach when the temperature is soaring. It might mean no hikes up steep mountain trails. And it might even mean having to postpone your date because your symptoms are acting up. But like so many other things in life, with a little planning and adaptation, a person living with MS can enjoy a fulfilling dating life. I'm devoting this entire episode of RealTalk MS to a conversation about dating with MS. Alaya McKinney and Akeem McMichael, two millennials who are each out there in the dating world, join me to share their real-world experiences and strategies for dating while living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Alaya McKinney and Akeem McMichael talk about dating with MS :22 Share this episode 29:04 Download the RealTalk MS app for your iOS or Android device 29:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/257 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 257 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 256: How NeuraLight May Revolutionize Drug Development and MS Care with Co-Founder and CEO Micha Breakstone | 25 Jul 2022 | 00:35:49 | |
Imagine that, using your smartphone, you log into a Zoom call from home. You connect with your MS specialist and, while you're chatting, an artificial intelligence-based system is analyzing biometric measurements that will enable your doctor to deliver or fine-tune an MS treatment plan that's been personalized to meet your exact needs. That's the vision driving NeuraLight, an early-stage company that's, first, aiming to re-write clinical trial design and accelerate new drug development. Joining me to give us an exclusive briefing on NeuraLight's game-changing mission is the co-founder and CEO of NeuraLight, Micha Breakstone. We're also sharing the results of a pilot study that looked at the impact of intermittent fasting on people living with MS. We'll tell you about a study that explored how social support affected the quality of sleep among people living with MS during the COVID-19 pandemic. We've talked a lot about neurofilament light chain in past episodes of RealTalk MS. In this episode, we'll tell you about Labcorp's 2,000 patient service centers that now offer a blood test to measure neurofilament light chain levels. (And we'll tell you why that's a very good thing!) We'll also share the results of a study that shows how experts may be underestimating the economic burden of living with MS in Canada. And if you think you might be interested in participating in a study designed to measure the impact of different diets on MS, we'll give you the details about how you can get involved. We have a lot to talk about! Are you ready for RealTalk MS??! NeuraLight's vision of the future :22 Intermittent fasting produces immune and metabolic changes in people with MS 1:28 Study shows social support is a predictor of sleep quality in people with MS during the COVID-19 pandemic 4:30 Labcorp announces availability of neurofilament light chain blood test 6:39 CanProCo research shows the economic burden of living with MS in Canada may be underestimated 8:58 Dr. Terry Wahls is recruiting for a study of how 3 different diets impact MS 12:16 Micha Breakstone gives us an exclusive briefing about how NeuraLight may change everything (for the better!) when it comes to MS drug development and MS care 15:28 Share this episode 34:17 Download the RealTalk MS app for your iOS or Android device 34:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/256 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS NeuraLight STUDY: Intermittent Calorie Restriction Alters T-Cell Subsets and Metabolic Markers in People with Multiple Sclerosis STUDY: Social Support Predicts Sleep Quality in People with Multiple Sclerosis During the COVID-19 Pandemic STUDY: Productivity Loss Among People with Early Multiple Sclerosis: A Canadian Study Screening Survey for Efficacy of Diet on Quality of Life in Multiple Sclerosis Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 256 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 255: Aging With MS with Dr. John Corboy | 18 Jul 2022 | 00:34:51 | |
In last week's episode, we looked at talking with kids about MS. This week, we'll visit the opposite end of the spectrum as Dr. John Corboy discusses some of the things you'll want to think about as you age with MS. Dr. Corboy is a professor of neurology at the University of Colorado School of Medicine, and the Director of the Rocky Mountain Multiple Sclerosis Center at the University of Colorado. Dr. Corboy is also the Principal Investigator in a recently completed clinical trial that focused on the effects of stopping MS disease-modifying medications in older people living with MS. We're also sharing the details of a new legislative proposal designed to help manage the skyrocketing cost of prescription drugs. We'll invite you to be among the first people to review a just-published paper that focuses on how identifying the prodromal phase of MS may lead to disease prevention. We'll share the evidence from a study that shows how lifestyle choices like choosing not to smoke, engaging in physical activity, and eating a healthy diet can actually impact MS disease progression. And we'll share some shocking news about how much MS disease-modifying medication is wasted. We have a lot to talk about! Are you ready for RealTalk MS??! Aging and MS :22 Revised legislative proposals to better manage the high cost of MS prescription medications 1:28 An important paper focused on how identifying the prodromal phase of MS can lead to disease progression 3:54 Lifestyle factors in MS disability progression 5:53 The shocking reality of DMT waste 9:09 Dr. John Corboy discusses aging and MS and the impact of stopping MS disease-modifying medications in older adults living with MS 13:33 Share this episode 33:17 Download the RealTalk MS app for your iOS or Android device 33:37 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/255 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS RealTalk MS Episode 246: The High Cost of MS Medications with Steffany Stern National MS Society Applauds Revised Legislative Proposals to Lower the Cost of Prescription Drugs for People Affected by MS National MS Society Advocacy From the Prodromal Stage of Multiple Sclerosis to Disease Prevention STUDY: Lifestyle Factors in Multiple Sclerosis Disability Progression and Silent Brain Damage: A Cross-Sectional Study STUDY: Hiding in Plain Sight: The Magnitude of Unused Disease Modifying Therapies in Multiple Sclerosis and Strategies for Reducing the Economic Burden of Care Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 255 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 254: Talking to Kids About MS with Erin Martin | 11 Jul 2022 | 00:30:37 | |
Whether we adults admit it or not, kids see everything. That includes seeing a parent or other family member who's living with MS. And because kids don't have an understanding of neurological conditions, they use their imaginations to fill in the blanks. That can very quickly take them down a rabbit-hole that's far scarier than the reality of living with MS. So, when do you talk to your kids about MS? And what do you say? Licensed social worker and behavioral specialist Erin Martin joins me to talk about talking to kids about your MS. If you're living with MS and you still smoke, we're sharing results of a study that you may want to carefully consider. We'll also share the results of two different studies that might help inform your COVID-19 strategy if you're on a b-cell depleting disease-modifying therapy. We'll let you know how you can catch the video replay of an excellent webinar presented by the International Progressive MS Alliance. We'll share the details about how a group of international experts discovered a method for measuring remyelinated MS lesions (And we'll tell you why that's become important right now) We'll also share some encouraging results of a study that looked at the impact of estriol and Copaxone on women living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Talking to kids about MS :22 Smoking is shown to affect MS progression 1:29 COVID-19 vaccines, breakthrough infections, and Evusheld 3:44 Catch the video replay of the International Progressive MS Alliance Webinar 8:31 A team of international experts discover a way to measure myelin repair 9:08 Combination of Estriol plus Copaxone is shown to reduce neurofilament light chain levels 11:57 Behavioral specialist Erin Martin discusses talking about MS with your kids 14:27 Share this episode 29:03 Download the RealTalk MS app for your iOS or Android device 29:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/254 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: The Effect of Smoking on Long-Term Grey Matter Atrophy and Clinical Disability in Patients with Relapsing-Remitting Multiple Sclerosis STUDY: Tixagevimab and Cligavimab (Evusheld) Boost Antibody Levels to SARS-COV2 in Patients with Multiple Sclerosis on B-Cell Depleters VIDEO: Solving the Mystery of Progression: The Key to New Treatments for Progressive MS STUDY: A New Advanced MRI Biomarker for Remyelinated Lesions in Multiple Sclerosis STUDY: Decreased Neurofilament Light Chain Levels in Estriol-Treated Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 254 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 253: Managing Grief and MS with Dr. Rosalind Kalb | 04 Jul 2022 | 00:31:36 | |
Everybody remembers the day -- sometimes, even the moment -- when they were diagnosed with MS. And in that moment, you may not have known very much about living with MS, but you probably felt like everything was about to change. One of the most common emotional responses to MS is grief. Joining me to talk about the relationship between grief and MS, as well as share some specific steps and strategies that you can take to process and manage grief in a healthy way is clinical psychologist Dr. Rosalind Kalb. Dr. Kalb has specialized in MS care and education for almost 40 years. She's a past Vice-President of the Professional Resource Center at the National MS Society. And currently, Dr. Kalb is the Senior Programs Consultant for Can Do MS. We'll also share the details of the experiments conducted by two German scientists that may shed important light on the process of myelin repair. We'll tell you what a research team learned from the largest MS fatigue study ever conducted in the United Kingdom. We'll highlight some of the changes to the updated guidelines for diagnosing and treating MS in the U.K. And we'll share the results of an extension study of Kesimpta presented last week at the annual meeting of the European Academy of Neurology. We have a lot to talk about! Are you ready for RealTalk MS??! Grief and MS :22 Scientists may have discovered two proteins that stop myelin repair 1:26 Researchers share results of the largest MS fatigue study in the U.K. 3:39 Updated guidelines for diagnosing and treating MS in the U.K. 6:31 Kesimpta extension study participants show no evidence of disease activity after 4 years 8:57 Dr. Rosalind Kalb discusses grief and MS 11:42 Share this episode 30:03 Download the RealTalk MS app for your iOS or Android device 30:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/253 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS The Extracellular Matrix Proteins Tenascin-C and Tenascin-R Retard Oligodendrocyte Precursor Maturation and Myelin Regeneration in Cuprizone-Induced Long-Term Demyelination Animal Model Fatigue in Multiple Sclerosis: A UK MS-Register Based Study Updated NICE Guidelines -- Multiple Sclerosis in Adults: Management Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 253 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 252: The Journey from MS Diagnosis to Podcaster to Patients Getting Paid with Kathy Reagan Young | 27 Jun 2022 | 00:32:44 | |
When I began thinking about launching RealTalk MS, one of the first things I did was listen to other podcasts for the MS community. Five years ago, there weren't nearly as many podcasts focused on MS as there are today, but one of the podcasts I listened to was FUMS. And after listening to that podcast, I remember feeling inspired about moving forward with my plans for launching this podcast. Joining me to talk about her journey from being diagnosed with MS to launching her podcast and learning how patients get paid is the voice and energy behind the FUMS podcast, Kathy Reagan Young. We're also talking about a new venture from France, aimed at myelin repair. We'll share the details of a treatment for urinary incontinence for people living with MS that will soon be available in European Union countries. And we'll tell you about the first robotic exoskeleton that's received FDA clearance for use by people with MS. (And we'll tell you why that's going to make a real difference for some people living with progressive MS!) We have a lot to talk about! Are you ready for RealTalk MS??! 250 Episodes -- 1.500,000 Downloads and counting! :22 FIND Therapeutics and SATT Connectus collaborate on myelin repair 2:14 Dysport receives favorable opinion from the EU 3:28 FDA grants clearance for robotic exoskeleton use by people with MS 6:09 Kathy Reagan Young's journey from diagnosis to giving MS the finger and learning how patients get paid 8:45 Share this episode 31:12 Download the RealTalk MS app for your iOS or Android device 31:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/252 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: Efficacy and Safety of AbobotulinumtoxinA in Patients with Neurogenic Detrusor Overactivity Incontinence Performing Regular Clean Intermittent Catheterization: Pooled Results of Two Phase 3 Randomized Studies (CONTENT1 and CONTENT2) RealTalk MS #198: Dr. Brian Sandroff Shares the Results of Kessler Foundation's Robotic Exoskeleton-Assisted Exercise Pilot Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 252 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 251: MS in the LGBTQ+ Community with Dr. William Conte, Payshunz Nagashima, and Andreina Barnola | 20 Jun 2022 | 00:27:43 | |
Health disparities, systemic inequities, and discrimination often stand in the way of gaining access to MS care for members of the LGBTQ+ community. As we explore some of the obstacles faced by members of the LGBTQ+ community in accessing healthcare, we'll gain the clinician's perspective in our conversation with MS specialist, Dr. William Conte. We'll hear about the experiences of a queer trans person living with MS when we talk with Payshunz Nagashima. And we'll learn about the National MS Society's efforts to broaden access to MS care for members of underserved communities when we speak with the MS Society's Director of Health Equity Initiatives, Andreina Barnola. We have a lot to talk about! Are you ready for RealTalk MS??! June is Pride Month :22 Dr. William Conte discusses obstacles to MS care faced by members of the LGBTQ+ community 1:12 Payshunz Nagashima shares their experience as a queer transgender person living with MS 10:30 Andreina Barnola discusses the role of the National MS Society in improving access to MS care for members of underserved communities 20:20 Share this episode 26:09 Download the RealTalk MS app for your iOS or Android device 26:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/251 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 251 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 250: At the Consortium of MS Centers Annual Meeting with Dr. Saud Sadiq, Dr. Kathy Zackowski and Marijean Buhse, PhD, RN, NP-C, MSCN | 15 Jun 2022 | 00:34:46 | |
One afternoon during the Consortium of Multiple Sclerosis Centers Annual Meeting, I set up my equipment at the National MS Society's booth in the conference exhibit hall and recorded some conversations with a few old friends and a few new friends of the podcast. In this week's episode, we'll hear a couple of those conversations. Before I left for the conference, I had a chance to catch up with Dr. Saud Sadiq. So, we'll begin this episode with an update on his mesenchymal stem cell clinical trial and the unprecedented outcome he's seeing. We'll talk with Dr. Kathy Zackowski and get her impressions of some of the conference presentations that got her attention. And we'll hear from Marijean Buhse as she recaps what I found to be an important presentation on shared decision-making. We have a lot to talk about! Are you ready for RealTalk MS??! We're at the Consortium of Multiple Sclerosis Centers Annual Meeting! :22 Dr. Saud Sadiq Updates Us on His Mesenchymal Stem Cell Clinical Trial 1:43 Dr. Kathy Zackowski Discusses the Conference Presentations That Caught Her Attention 10:44 Marijean Buhse Recaps Her Conference Presentation on Shared-Decision Making 23:27 Share this episode 33:13 Download the RealTalk MS app for your iOS or Android device 33:34 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/250 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS RealTalk MS Episode 215: Stem Cell Therapy for MS with Dr. Jeffrey Cohen The National MS Society Presents the Black MS Experience Summit iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 250 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 249: The Ball Came Out with Tyler Campbell | 06 Jun 2022 | 00:28:27 | |
In 2007, Tyler Campbell was a running back at San Diego State, looking forward to a real shot at a career in the NFL. Instead, Tyler's life was turned upside down by an MS diagnosis. For some people, that would have been the end of the story. For Tyler, it was only the beginning. In this week's episode, Tyler Campbell talks about his transformational journey from the football field to becoming a motivational and inspirational leader in the MS movement. We have a lot to talk about! Are you ready for RealTalk MS??! I met a real difference-maker! :22 My conversation with Tyler Campbell 1:12 Share this episode 26:56 Download the RealTalk MS app for your iOS or Android device 27:16 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/249 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS The National MS Society Presents the Black MS Experience Summit iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 249 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 353: From the Consortium of MS Centers Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger | 03 Jun 2024 | 00:35:42 | |
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 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 353
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| Episode 248: Pregnancy and MS with Dr. Annette Langer-Gould | 30 May 2022 | 00:32:32 | |
Starting a family is a big step for anyone. And when you're living with MS and you're on MS medications along with other symptom management medications, planning a family creates a lot of questions about what's safe and what's not. Dr. Annette Langer-Gould, a clinician-scientist and MS specialist in the Kaiser-Permanente health system, joins me to answer questions about how to safely and successfully navigate conception, pregnancy, and the postpartum period with MS. We'll also get a briefing from Principal Investigator Dr. Jiwon Oh on the long-term extension study of Tolebrutinib, an investigational MS medication that's part of a whole new category of MS medications. And we're sharing details of the 2022 Black MS Experience Summit, taking place June 15-16. Find out how and where to register for this free event! We have a lot to talk about! Are you ready for RealTalk MS??! I'm heading to the Consortium of MS Centers Annual Meeting :22 Dr. Jiwon Oh discusses the long-term extension study of Tolebrutinib 1:02 The Black MS Experience Summit is happening June 15-16 11:01 Can-Do MS is hosting a webinar on "Bowel and Bladder: How to Find Confidence and Control" 12:03 Dr. Annette Langer-Gould discusses pregnancy and MS 13:01 Share this episode 31:00 Download the RealTalk MS app for your iOS or Android device 31:20 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/248 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS The National MS Society Presents the Black MS Experience Summit Can Do MS Webinar Information and Registration iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 248 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
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| Episode 247: Biomarkers Can Help Diagnose MS, Predict MS, and Telegraph MS Progression with Dr. Tanuja Chitnis | 23 May 2022 | 00:29:55 | |
Think about how much faster, easier, cheaper, and less invasive it would be if MS could be diagnosed by a simple blood test. Scientists have identified biomarkers that can be used to diagnose MS and even predict MS before someone experiences any symptoms. Biomarkers may even be used to predict MS progression before it occurs. Joining me to discuss how biomarkers may change the way MS is diagnosed and treated is Dr. Tanuja Chitnis, a Professor of Neurology at Harvard Medical School, as well as the Director of the CLIMB Study and the Translational Neuroimmunology Research Center at Brigham and Women's Hospital. We're also talking about a recent breakthrough in myelin repair. We're sharing all the details about how you can participate in World MS Day on May 30th. We'll tell you about a report commissioned by the National Academy of Medicine that takes a close look at the challenges of identifying credible health information in social media. And if you're an MS caregiver, healthcare professional, or researcher, we'll give you the details of an important survey that you can participate in. We have a lot to talk about! Are you ready for RealTalk MS??! Biomarkers can change everything :22 May 30th is World MS Day 1:53 Lab-made molecule is shown to promote myelin repair in preclinical models of MS 3:23 National Academy of Medicine weighs in on the challenges of finding credible sources of health information in social media 5:03 An important survey for MS caregivers, healthcare professionals, and researchers 11:34 Dr. Tanuja Chitnis discusses biomarkers that may fundamentally change how MS is diagnosed and treated 13:38 Share this episode 28:23 Download the RealTalk MS app for your iOS or Android device 28:43 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/247 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Report: Identifying Credible Sources of Health Information in Social Media: Principles and Attributes World MS Day iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 247 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 246: The High Cost of MS Medications with Steffany Stern | 16 May 2022 | 00:33:42 | |
When my wife was diagnosed with MS in 1997, the annual cost of her MS medication was $9,000. Today, the annual cost of that same medication is $110,000. We cannot allow the insanity associated with the cost of MS medications to continue. Joining me to discuss the impact of the outrageously high cost of MS medications -- and what each of us can do about it -- is the National MS Society's Vice-President of Advocacy, Steffany Stern. We're also talking about a Phase 1 clinical trial for an investigational Epstein-Barr Virus vaccine (and why that matters to everyone living with MS). We'll tell you about a study that may have identified a biomarker for MS-related fatigue. We're also sharing the results of a study that identified which stress-reducing activities can help reduce MS-related depression and fatigue. And we'll tell you about a study that identified the economic benefits of starting MS medications early. We have a lot to talk about! Are you ready for RealTalk MS??! The (HIGH!) Cost of MS Medications :22 NIH Announces Phase I Clinical Trial of Investigational EBV Vaccine 4:21 Study identifies a potential biomarker for MS fatigue 6:04 Study identifies stress-reducing activities that lower MS-related depression and fatigue 8:37 Study shows the economic benefits of starting MS medications early 11:25 Steffany Stern discusses the impact of the cost of MS medications 14:16 Share this episode 32:10 Download the RealTalk MS app for your iOS or Android device 32:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/246 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS National MS Society: You Can Help Bring MS Medications Into Reach RealTalk MS Ep.229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi RealTalk MS Episode 231: Evidence Shows EBV Triggers MS: Understanding this Breakthrough Research with Dr. Bruce Bebo Cerebrospinal Fluid Amyloid Precursor Protein as a Potential Biomarker for Fatigue in Multiple Sclerosis: A Pilot Study SURVEY: Undertaking Specific Stress-Reducing Activities are Associated with Reduced Fatigue and Depression, And Increased Mastery, in People with Multiple Sclerosis Early vs Late Treatment Initiation in Multiple Sclerosis and Its Impact on Cost of Illness: A Register-Based Prospective Cohort Study in Sweden iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 246 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 245: The Journey to an MS Diagnosis with Dr. Michael Robers | 09 May 2022 | 00:32:53 | |
For some, the journey to their MS diagnosis is relatively quick and straightforward. For others, it can be lengthy and convoluted, sometimes taking years. Joining me to talk about some of the twists and turns that can pop up on the road to being diagnosed with MS is Dr. Michael Robers, a neurologist in the Multiple Sclerosis Program and an assistant professor in the Department of Neurology at Barrow Neurological Institute. We're also talking about a study that measured MS prevalence among Black, White, Hispanic, and Asian people. We'll share results of a survey that looked at cannabis use among Canadians living with MS. We're also sharing results of a survey that looked at where Americans living with MS get their information about cannabis. If you're an MS caregiver, healthcare professional, or researcher, we'll give you the details about an important survey that you can participate in. And we're even taking a moment for a special thank you! We have a lot to talk about! Are you ready for RealTalk MS??! A quick look at the numbers and a heartfelt thank you! :22 A date that each person remembers 2:59 Study looks at MS prevalence among different racial and ethnic groups 4:36 Survey results show cannabis use among Canadians with MS 7:41 Where do you get your information? 10:07 Survey results show where Americans with MS get their information and guidance about cannabis 11:20 An important survey for MS caregivers, healthcare professionals, and researchers 14:37 Dr. Michael Robers discusses the journey to an MS diagnosis 17:03 Share this episode 31:20 Download the RealTalk MS app for your iOS or Android device 31:41 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/245 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: Racial and Ethnic Disparities in Multiple Sclerosis Prevalence SURVEY: Medical Cannabis Used in Canadians with Multiple Sclerosis SURVEY: Sources of Cannabis Information and Medical Guidance for Neurologic Use: NARCOMS Survey of People Living with Multiple Sclerosis iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 245 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 244: Financial Planning For People Living with MS with Financial Advisor Dick Bell | 02 May 2022 | 00:29:37 | |
Planning for your financial future is good advice for everyone. But when you're living with MS, financial planning is an important part of the game plan for living your best life. Joining me to talk about the things you'll want to keep in mind as you develop your personal financial roadmap is Dick Bell, a professional financial advisor who has worked with more than 600 clients who are living with MS. We're also talking about how Russia's invasion of Ukraine is impacting MS clinical research. We'll tell you about a study that's focusing on a novel approach to promoting remyelination. We're sharing the results of a study that identified a biomarker that may predict future MS disease progression. And we'll share survey results that show all the ways that MS can impact life. We have a lot to talk about! Are you ready for RealTalk MS??! How Russia's invasion of Ukraine is impacting MS clinical research 1:35 A study in the U.K. will test a novel approach to promoting remyelination: 3:27 Study identifies a biomarker that may predict future MS disease activity 7:26 FDA awards Breakthrough Device Designation to a technology that may speed MS diagnosis and predict future disease activity 9:56 Survey results show all the ways MS impacts your life 11:20 Financial advisor Dick Bell discusses your long-term financial strategy for living with MS 15:39 Share this episode 28:05 Download the RealTalk MS app for your iOS or Android device 28:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/244 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS CCMR Two: A Phase IIa, Randomised, Double-Blind, Placebo-Controlled Trial of the Ability of Metformin and Clemastine to Promote Remyelination in People with Relapsing-Remitting Multiple Sclerosis Already on Disease-Modifying Therapy STUDY: Prognostic Value of Serum Filament Light Chain for Disease Activity and Worsening in Patients with Relapsing Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 244 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 243: The Economic Burden of MS with Dr. Bruce Bebo and Bari Talente | 25 Apr 2022 | 00:30:37 | |
Living with MS is expensive. And if you're curious about how expensive living with MS is, why it's so expensive, and what can be done about it, then you're going to be interested in the results of a study that was commissioned by the National MS Society. Joining me to talk about what this study revealed and what it means to individuals and families affected by MS are Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society, and the MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente. We're also talking about a study that reveals a connection between MS severity and geography. Have you ever wondered why some people develop severe MS while others don't? We're sharing the details of a study that's hoping to answer that question. And if you're a caregiver for someone who's living with MS, or you're a healthcare provider who interacts with MS caregivers, or you're a researcher interested in MS caregivers, we'll explain why iConquer MS would like just a few minutes of your time. We have a lot to talk about! Are you ready for RealTalk MS??! Measuring the financial impact of MS :22 A study shows MS severity correlates to geographic latitude 1:47 A new study will try to understand why some people develop severe MS while others don't 4:13 iConquer MS is expanding to include MS caregivers but first they need your help 7:26 Dr. Bruce Bebo and Bari Talente break down the results of a study that focused on the cost of living with MS 9:56 Share this episode 29:04 Download the RealTalk MS app for your iOS or Android device 29:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/243 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: Economic Burden of Multiple Sclerosis in the United States: Estimate of Direct and Indirect Costs STUDY: Association of Latitude and Exposure to Ultraviolet B Radiation With Severity of Multiple Sclerosis: An International Registry Study University at Buffalo Multiple Sclerosis Research Challenge: Contribute to the CASA-MS Study iConquer MS Survey for MS Caregivers iConquer MS Survey for Researchers and Healthcare Providers Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 243 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 242: No Masks or Proof of Vax? Staying Safe in the Next Normal If You're Living with MS with Dr. Nancy Sicotte | 18 Apr 2022 | 00:34:03 | |
Mask mandates have mostly ended, and bars, restaurants, public buildings, and other businesses no longer require proof of vaccination. It looks like the COVID-19 pandemic is over. Except for the fact that we're seeing cases of the latest COVID subvariant continue to rise in cities across the country and around the world. So, how do we navigate this post-pandemic world? And if you happen to be immunocompromised, how do you stay safe? Joining me as she has throughout the pandemic, with an update including the steps you can take to stay safe as the world re-opens is Dr. Nancy Sicotte. Dr. Sicotte is a professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles. Dr. Sicotte also Chairs the National MS Society’s National Medical Advisory Committee and she leads the MS Society's COVID-19 Advisory Group. We're also talking about a workshop that brought together a group of global experts to weigh in on autologous hematopoietic stem cell transplantation (aHSCT) as a viable treatment for MS. We're sharing the details about an upcoming clinical trial that will test a myelin-restoring treatment for people with relapsing-remitting MS. Evidence from multiple studies shows that members of the Black and Hispanic communities who live with MS can experience a more severe disease course and a higher disability burden. We'll share the details of a presentation from the Academy of American Neurology annual meeting that sheds new light on what may be driving these disparities. And we'll tell you how you can register to participate in the National African-Americans with MS Registry. We have a lot to talk about! Are you ready for RealTalk MS??! Welcome to the Next Normal! :22 ECTRIMS hosts an Autologous Hematopoietic Stem Cell Transplantation (aHSCT) workshop 1:45 FDA Approves clinical trial for a myelin-restoring treatment 6:04 New data may explain racial and ethnic disparities in MS disease severity and treatment 7:45 The National African Americans with MS Registry 10:13 Dr. Nancy Sicotte explains what people with MS need to know to stay safe as they re-enter a post-pandemic world 11:52 Share this episode 32:31 Download the RealTalk MS app for your iOS or Android device 32:51 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/242 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS ECTRIMS Focused Workshop: Autologous Hematopoietic Stem Cell Transplantation For Treatment of MS and Related Diseases National MS Society Recommendations for aHSCT-Bone Marrow Transplant for MS National African Americans with MS Registry Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 242 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 241: American Academy of Neurology Annual Meeting Recap with Prof. Xavier Montalban | 11 Apr 2022 | 00:26:24 | |
I spent last week attending the American Academy of Neurology (AAN) Annual Meeting and in this week's episode of RealTalk MS, I'm sharing an overview of what I saw and what I heard. Each year at the AAN meeting, the American Academy of Neurology and the National MS Society award the John Dystel Prize for MS Research. Joining me on today's podcast is this year's recipient of the Dystel Prize, Professor Xavier Montalban. We're also talking about how the COVID-19 pandemic has affected MS research and clinical care. We're sharing encouraging news about two potential disease-modifying therapies. And we'll share some of the over-arching themes that kept popping up in a number of different meetings, presentations, and conversations during the AAN annual meeting. We have a lot to talk about! Are you ready for RealTalk MS??! The impact of the pandemic on MS research and clinical care :53 Results of Phase 2 extension study show Evobrutinib effective in reducing relapse rates in relapsing forms of MS 4:53 Results of Ublituximab Phase 3 post-hoc analyses announced 7:16 Dr. Stephen Hauser receives the Scientific Breakthrough Award 9:25 The importance of making complex science easy to understand for people affected by MS 10:29 The importance of increasing clinical trial participation among members of minority communities 12:48 The importance of caring for the caregiver 14:04 John Dystel Prize for MS Research awarded to Prof. Xavier Montalban 15:40 My conversation with John Dystel Prize recipient Professor Xavier Montalban 16:25 Share this episode 24:51 Have you downloaded the RealTalk MS app? 25:12 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/241 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: jonstrum@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 241 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 240: Hypnosis and MS with Dr. Mark Jensen | 04 Apr 2022 | 00:32:49 | |
Research has shown that hypnosis is an effective treatment for managing chronic pain, including pain associated with MS. My guest, Dr. Mark Jensen, is a Professor and Vice-Chair of the Department of Rehabilitation Medicine at the University of Washington. Dr. Jensen has devoted his career to developing effective treatments for pain and is an expert on hypnotic interventions. We're also talking about a research team that may have learned how to successfully penetrate the blood-brain barrier (and why that could be great news for people living with MS!). We'll share the results of a 10-year study in France that showed very positive outcomes for people living with highly active relapsing-remitting MS. We'll tell you about 66 research projects that have just been funded by the MS Society of Canada. And we'll share results from a survey that identify pandemic-specific depression and anxiety among people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Researchers may have found a way through the blood- brain barrier 1:17 10-year study reveals surprising results 4:19 MS Society of Canada announces funding for 66 research projects 8:07 Researchers identify pandemic-related depression among people living with MS 9:11 Dr. Mark Jensen discusses treating MS-related chronic pain with hypnosis 12:43 Share this episode 30:58 Have you downloaded the RealTalk MS app? 31:19 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/240 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: jonstrum@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: Endothelial Unc5B Controls Blood-Brain Barrier Integrity STUDY: Ten-Year Follow-Up After Mitoxantrone Induction For Early Highly Active Relapsing-Remitting Multiple Sclerosis: An Observational Study of 100 Consecutive Patients MS Society of Canada Research Funding Announcement National MS Society MS Navigator Contact Info Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 240 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 239: New Research Goals Set by the International Progressive MS Alliance with Dr. Robert Fox | 28 Mar 2022 | 00:29:40 | |
A decade ago, the International Progressive MS Alliance didn't exist. Today, it can be credited with changing the global conversation about progressive MS research, elevating the progressive MS research agenda and moving the work forward. A few weeks ago, the Alliance announced the details of an ambitious strategic plan that will guide their work over the next 3 years. Joining me to talk about the new goals that were set by the Alliance, and what that means for people affected by progressive MS, is the Chair of the Alliance's Scientific Steering Committee, Dr. Robert Fox. The MS International Federation conducted a survey and we're wondering whether the responses have raised a larger question? We're also talking about a study that showed how an online mindfulness program significantly improved depression for people living with MS. We're sharing study results that show your nose knows when your DMT is working well for you. We'll also share the details about an exciting undertaking at the University of Colorado that may lead to treating people so that they completely avoid the symptoms of MS. And we'll tell you about a small trial that demonstrated the effectiveness of an experimental stem cell therapy as a potential treatment for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! International Progressive MS Alliance unveils a new 3-year strategic plan :22 Survey results raise a larger question -- How do we share MS research news with people affected by MS??? 1:04 Online mindfulness provides significant improvement for managing depression among people with MS 16:14 Using your nose to determine the efficacy of your disease-modifying therapy 8:33 NeuroGenesis cell therapy shows promise as a potential treatment for progressive MS 14:14 Dr. Robert Fox discusses what's next for the International Progressive MS Alliance 17:28 Share this episode 28:07 Have you downloaded the RealTalk MS app? 28:27 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/239 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: jonstrum@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS International Progressive MS Alliance STUDY: A Randomized Controlled Trial of a Web-Based Mindfulness Programme for People With MS With and Without a History of Recurrent Depression STUDY: Olfactory Threshold Predicts Treatment Response in Relapsing Multiple Sclerosis STUDY: Effects of Mesenchymal Stem Cell Transplantation on Cerebrospinal Fluid Biomarkers in Progressive MS Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 239 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 352: World MS Day with Rachel Horne | 27 May 2024 | 00:28:23 | |
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 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 World MS Day Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 352
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| Episode 238: The Pathways to Cures Research Roadmap with Dr. Carol Whitacre and Prof. Alan Thompson | 21 Mar 2022 | 00:35:29 | |
The Pathways to Cures initiative is focused on stopping MS progression, restoring lost function, and ending MS forever. This bold initiative has already been endorsed by more than 20 MS research and patient organizations around the world. And now, the publication of the Pathways to Cures Research Roadmap has brought us to a pivotal moment in the history of MS research. Joining me in this episode of RealTalk MS are two very special guests, Dr. Carol Whitacre and Professor Alan Thompson. We're taking a close look at what Pathways to Cures is all about, where we are on the Pathways to Cures Research Roadmap, and what this initiative means for people affected by MS. Dr. Whitacre is the former Senior Vice-President of Research at The Ohio State University, and the current Chair of the National MS Society's Scientific Advisory Committee. Professor Thompson is a clinician scientist who has been the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS. We have a lot to talk about! Are you ready for RealTalk MS??! The Pathways to Cures Research Roadmap :22 Dr. Carol Whitacre discusses the significance of the Pathways to Cures initiative 3:34 Prof. Alan Thompson reviews the status of MS research to stop progression, restore lost function, and end MS, then looks ahead to next steps in the Pathways to Cures research roadmap 16:14 Share this episode 33:52 Have you downloaded the RealTalk MS app? 34:12 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/238 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: jonstrum@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS RealTalk MS Episode 125: The Pathways to Cures Think Tank Pathways to Cures Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 238 Tags: MS, MSAwareness MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 237: Raising MS Awareness with Marti Hines | 14 Mar 2022 | 00:27:45 | |
It's MS Awareness Week and my guest is Marti Hines. Marti is a successful event producer, entrepreneur, film producer, and director. She was diagnosed with MS in 2018, and Marti has been very transparent in sharing the highs and lows of her MS journey on her social channels. Like so many people living with MS, Marti has an amazing energy and a seemingly endless supply of resilience. You're going to enjoy meeting her. We're also talking about why increasing diversity in clinical trials is so vital. And we're highlighting the Consensus Statement on Health Equity in Clinical Trials and Real-World Evidence Data Collection that was released by the National MS Society's Corporate Healthcare Roundtable. You'll learn about the Cost Plus Drug Company, billionaire Mark Cuban's effort to disrupt the prescription drug market by offering generic drugs that truly are affordable. And we'll share the results of a study that shows that a keto diet may be beneficial for people living with relapsing MS. We have a lot to talk about! Are you ready for RealTalk MS??! It's MS Awareness Week! :22 MS Society Corporate Healthcare Roundtable issues a consensus statement on health equity in clinical trials 1:03 Mark Cuban Cost Plus Drug Company is compassionate capitalism in action 5:59Keto diet shows benefits for people with relapsing MS 11:18 Marti Hines talks about why sharing her MS journey is important 14:51 Share this episode 26:08 Have a minute? Leave a rating and review for RealTalk MS! 26:28 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/237 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: jonstrum@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS National MS Society MS Awareness Week National MS Society Corporate Healthcare Roundtable Consensus Statement on Health Equity in Clinical Trials and Real-World Evidence Data Collection National MS Society Public Policy Conference Replay Mark Cuban Cost Plus Drug Company STUDY: Ketogenic Diet as a Strategy for Improved Wellness and Reduced Disability in Relapsing Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 237 Tags: MS, MSAwareness MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||
| Episode 236: How MS Affects Mind, Mood, and Memory with Dr. Anthony Feinstein | 07 Mar 2022 | 00:30:09 | |
If you're living with MS, there's a good chance that, at some point, you're going to deal with depression, cognitive issues, or both of these common MS symptoms. We're taking a deep dive into how these symptoms can impact your everyday life at home and at work with the author of Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis, Dr. Anthony Feinstein. We're also highlighting some of the MS research that was presented two weeks ago at the ACTRIMS Forum, the annual meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis. You'll hear how artificial intelligence is being used to predict how someone will respond to different disease-modifying therapies. You'll learn about the efficacy of stem cell therapy in treating aggressive MS. And we'll share the results of a research project designed to calculate the economic burden of MS in the United States. We have a lot to talk about! Are you ready for RealTalk MS??! Thanks for participating in the Public Policy Conference! :22 Why we talk about depression and cognitive issues on this podcast :47 AI helps predict treatment response in primary progressive MS 3:02 Stem cell therapy shows benefits in treating aggressive MS 6:28 Study measures the economic burden of MS 8:32 Dr. Anthony Feinstein discusses how mind, mood, and memory impact MS 12:31 Share this episode 28:34 Download the RealTalk MS app for your iOS or Android device 28:56 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/236 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: jonstrum@realtalkms.com And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS "Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis" on Amazon.com STUDY: A Comprehensive Assessment of the Total Economic Burden of Multiple Sclerosis in the United States Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Devices Download the RealTalk MS App for Android Devices Give RealTalk MS a rating and review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 236 Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy | |||