RealTalk MS

RealTalk MS

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RealTalk MS episodes

  • Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed

    We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study.

    Chiquita and Earl will discuss how they discovered the TEAAMS study, what motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them.

    We'll also take you to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference.

    It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS.

    And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar :22

    This Week: The patient perspective on participating in an MS research study 1:38

    Live! From the Natinal MS Society's Public Policy Conference 2:28

    People with MS weign in on the impact of several ECTRIMS presentations 10:17

    Catch the video replay of the International Progressive MS Alliance webcast 11:35

    Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study 12:11

    Share this episode 27:18

    Have you downloaded the free RealTalk MS app? 27:38

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/342

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index

    VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS https://youtu.be/eWoZLF4bZmo

    VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study https://www.youtube.com/watch?v=UtGtCnNkYOY

    VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions https://www.youtube.com/watch?v=J83jlqMbsZo

    VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience https://www.youtube.com/watch?v=_fRLW69Xc1A

    VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey https://www.youtube.com/watch?v=oZDdp8JumFg

    VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS https://www.youtube.com/watch?v=W4hxtl38MBQ

    The TEAAMS Study https://projectteaams.ahs.uic.edu

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

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    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 342 Guests: Chiquita Shepard-Knight and Earl Sneed

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    29 min
  • Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha

    Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue.

    Dr. Shiv Saidha joins me as we take a deep dive into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: We're taking a deep dive into managing MS-related vision issues :22

    Doctor Shiv Saidha discusses how to best manage MS-related vision issues 1:17

    Share this episode 29:44

    Have you downloaded the free RealTalk MS app? 30:05

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/341

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 341 Guest: Dr. Shiv Saidha

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    32 min
  • Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham

    When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy.

    Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially life-changing rehabilitation tools for people living with MS.

    Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field.

    Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: We're taking a deep dive into next-generation tools for MS rehabilitation :22

    Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation 1:44

    Share this episode 29:48

    Have you downloaded the free RealTalk MS app? 30:08

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/340

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 340 Guest: Dr. Deborah Backus and Dr. Brad Willingham

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    32 min
  • Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson

    A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity, or PIRA, means and how it may or may not impact your MS journey.

    And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS.

    Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.

    We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy.

    We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce.

    We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process.

    And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: What is "Progression Independent of Relapse Activity"? 1:31

    STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS 3:02

    STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS 6:49

    An AI tool has been developed that can predict an individual's MS disease course 9:17

    SURVEY: Some people have mixed feelings about using AI in diagnosing illness 11:47

    STUDY: Caffeine is shown to improve balance and mobility in people with MS 14:38

    Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome 16:47

    Share this episode 28:15

    Have you downloaded the free RealTalk MS app? 28:35

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/339

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784

    STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway https://journals.sagepub.com/doi/10.1177/13524585241231665

    STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning https://link.springer.com/article/10.1007/s00415-023-12132-z

    SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services https://clinicbyclevelandclinic.com/consumer-perceptions-report

    STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 339 Guest: Professor Alan Thompson

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    30 min
  • Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern

    You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important.

    The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern.

    We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression.

    We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance.

    And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    Jeanne's Story :22

    This Week: Inside MS advocacy and this year's Public Policy Conference 8:36

    Experts publish an update on progressive MS research, identify lessons learned, and call out the remaining challenges 9:35

    The International Progressive MS Alliance hosts a global webcast this Thursday 17:22

    MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference 18:54

    Share this episode 31:51

    Have you downloaded the free RealTalk MS app? 32:10

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/338

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    National MS Society: Become an MS Activist https://nationalmssociety.org/advocacy

    PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract

    RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280

    RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis https://realtalkms.com/193

    WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research https://www.msif.org/treatments-webcast/

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 338 Guest: Steffany Stern

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    34 min
  • Episode 337: Aging With MS with Dr. Aaron Boster

    We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions.

    Is there a need to stay on disease-modifying therapy after the age of 60? How do we know whether a new symptom is a symptom of MS or a symptom of aging? Does an additional age-related health condition make treating MS more difficult? Does treating MS make treating that new health condition more difficult? How can we best offset the social isolation that's often associated with MS and with aging?

    This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: Aging with MS :22

    Dr. Aaron Boster tackles the multifaceted subject of aging with MS 1:59

    Share this episode 38:09

    Have you downloaded the free RealTalk MS app? 38:32

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/337

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 337 Guest: Dr. Aaron Boster

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    40 min
  • Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq.

    When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead.

    This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally, wrote the book for the National MS Society on applying for SSDI benefits.

    We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in.

    We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!)

    We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA.

    We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy.

    And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: How to apply for Social Security Disability Insurance benefits :22

    This year's recipient of the Barancik Prize for Innovation in MS research 1:58

    Real progress reported in efforts to penetrate the blood brain barrier 7:17

    FDA gives Fast-Track designation to CAR-T cell therapy for MS 10:03

    STUDY: Having a university education makes it more likely that someone with MS will be on a DMT 13:04

    STUDY: Geographic proximity to MS care in the U.S. is far from equal 15:04

    Disability law expert Jamie Hall discusses how to apply for SSDI benefits 19:29

    Share this episode 38:01

    Have you downloaded the free RealTalk MS app? 38:21

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/336

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf

    Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509

    STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register https://journals.sagepub.com/doi/10.1177/13524585231221411

    STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States https://www.neurology.org/doi/10.1212/WNL.0000000000207916

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 336 Guest: Jamie Hall, Esq.

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    40 min
  • Bonus Episode: MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne

    This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.

    In this special episode of RealTalk MS, Professor Alice Laroni and Rachel Horne join me to explore  what happens at the time someone receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis. 

    We're also exploring what should be happening at the time of diagnosis and what needs to come next.

    Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy.

    Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology.

    Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.

    25 min
  • Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster

    How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're employed, you absolutely need to know and understand your rights in the workplace.

    MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace.

    I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???)

    I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them.

    We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!)

    We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community)

    Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost.

    We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research.

    And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: Successfully navigating the health insurance maze :22

    Why the MS Navigators are the gold standard when it comes to support for people affected by MS :56

    Everything you need to know about the RealTalk MS show notes 2:12

    STUDY: A wheat-free diet may reduce MS severity 5:28

    Experts call for a new framework for describing Parkinson's Disease 8:31

    A test to determine who is at high risk for contracting PML is available...at no cost 11:36

    STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish 14:08

    The Spanish Society of Neurology has updated its guidelines for treating MS 15:42

    MS Navigator Christina Forster discusses your rights in the workplace 19:35

    Share this episode 30:37

    Have you downloaded the free RealTalk MS app? 30:57

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/335

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    Contact an MS Navigator Phone: 1-800-344-4867 Web via chat: https://nationalmssociety.org Email: [email protected]

    STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study https://journals.sagepub.com/doi/10.1177/17562864231170928

    Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoencephalopathy_genetic_risk_variants_for_pharmacovigilance_of_immunosuppressive_therapies

    No Cost PML Risk Genetic Test https://pmlrisktest.org

    STUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation https://www.nature.com/articles/s41593-023-01553-8

    Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023 https://www.sciencedirect.com/science/article/pii/S2173580824000191

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

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    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 335 Guest: Christina Forster

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    33 min
  • Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek

    Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment.

    MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises."

    We're also sharing study results that can help you get the most benefit from your everyday physical activity.

    We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation.

    We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS.

    We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies.

    And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest.

    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: Successfully navigating the health insurance maze :22

    STUDY: The benefit of physical activity lies in step rate and not step count 1:42

    Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation 3:47

    STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS 5:41

    You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company 8:50

    Generics for Tecfidera have been delayed at least one year in Europe 10:47

    MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs 12:03

    Share this episode 26:46

    Have you downloaded the free RealTalk MS app? 27:07

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/334

    ADD YOUR VOICE TO THE CONVERSATION

    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

    Email: [email protected] Phone: (310) 526-2283

    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS

    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

    STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume https://pubmed.ncbi.nlm.nih.gov/38214757

    Myrobalan Therapeutics https://myrotx.com

    STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969

    The Mark Cuban Cost Plus Drug Company https://costplusdrugs.com

    Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

    Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

    Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

    Give RealTalk MS a rating and review http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

    RealTalk MS Episode 334 Guest: Carla Turechek

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    29 min

About RealTalk MS

From the publisher's feed

Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You'll meet the scientists who are creating tomorrow's MS treatments today. You'll hear from the experts…

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