PodcastMedicinaRealTalk MS

RealTalk MS

Jon Strum
RealTalk MS
Ultimo episodio

504 episodi

  • RealTalk MS

    Episode 449: Putting People Affected by MS at the Center of MS Research with Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt

    06/04/2026 | 37 min
    When you join the iConquer MS community, you're no longer just a patient; you become a research partner. Not just a data point in someone's study. You become the person to suggest the study, to help define the study, and to participate in sharing the outcome of the study.


    In this week's episode, I talk with the iConquer MS leadership team about what it means to be part of this people-powered research revolution and how iConquer MS keeps people affected by MS at the center of MS research.
    The National Institutes of Health has just published a Strategic Plan for Disability Health Research. We're sharing all the details.
    And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.
    And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.


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

    This Week: We're talking about people-powered MS research  :22
    The NIH has published a Strategic Plan for Disability Health Research  1:15
    Researchers determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) are cost-effective  6:05
    Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt discuss what it means to put people affected by MS at the center of MS research  12:41
    Share this episode  36:26
    Next week  36:45

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/449
    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 at www.RealTalkMS.com
    iConquer MS
    https://iconquerms.org

    National Institutes of Health Strategic Plan for Disability Health Research
    https://dpcpsi.nih.gov/disabilityhealthresearch
    STUDY: Economic Value of Anti-CD20 Therapies in Multiple Sclerosis: A Systematic Review of Cost-Effectiveness Studies
    https://journals.sagepub.com/doi/10.1177/17562864261426816
    AbleNOW
    https://ablenow.com

    JOIN: The RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    REVIEW: Give RealTalk MS a rating and review
    http://www.realtalkms.com/review

    Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
    RealTalk MS Episode 449
    Guests: Sara Loud, Stephanie Buxoeveden, and Hollie Schmidt
    Privacy Policy
  • RealTalk MS

    Episode 448: At the National MS Society's Public Policy Conference with David, Cliff, and Michelle

    30/03/2026 | 31 min
    Last week, about 170 MS activists from across the country gathered in Washington, D.C. to participate in the National MS Society's Public Policy Conference. It's hard to come away from this event and not feel outraged by the stories that are shared, but also inspired by the resilience and bravery of the MS Activists who are willing to share some of the worst moments in their MS journey to make sure that our elected representatives in the House and Senate understand why the legislation we ask them to support is so vitally important.
     

     
    I met so many truly amazing MS activists at this year's Public Policy Conference, and you'll meet some of them in this week's episode.
     
    We're also sharing survey results that paint a disturbing picture of the human consequences that resulted from losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees 


    The National MS Society has invested $2.3 million in 11 research projects focused on women's health issues and MS. We're sharing details of each new research initiative being funded.
    You'll learn about a clinical trial for a novel investigational therapy for MS and other autoimmune diseases.
    And we'll tell you about a study that you can participate in from home...and get compensated for your participation!
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: We're at the Public Policy Conference  :22
    Survey results show the human consequences of losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees  4:45
    The National MS Society invests $2.3 million dollars in research projects focused on women's health issues and MS  7:23
    The first healthy participant is dosed in the clinical trial for ICP-538  11:24 
    An opportunity to participate from home in a clinical trial (and there's compensation!)  12:41
    MS Activists David, Cliff, and Michelle share their thoughts on attending the MS Society's Public Policy Conference  15:27
    Share this episode  30:10
    Next week  30:30

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/448
    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
    Support Jon at WALK MS
    https://realtalkms.com/walkms

    JOIN: Become an MS Activist
    https://nationalmssociety.org/advocacy
    LISTEN: RealTalk MS Episode 446 -- MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern
    https://realtalkms.com/446

    SURVEY RESULTS: Cost Concerns and Coverage Changes: A Follow-Up Survey of ACA Marketplace Enrollees
    https://www.kff.org/public-opinion/a-follow-up-survey-of-aca-marketplace-enrollees
    PARTICIPATE: A Study to Determine How Well Different Fall Prevention Programs Work for People with Spinal Court Injury and Multiple Sclerosis
    Email for More Information: [email protected]

    JOIN: The RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    REVIEW: Give RealTalk MS a rating and review
    http://www.realtalkms.com/review

    Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
    RealTalk MS Episode 448
    Guests: David Silbaugh, Cliff Currie, and Michelle Constantine Hibbs
    Privacy Policy
  • RealTalk MS

    Episode 447: Walking with Many Sisters Toward a Cure with Brigitte Delaney

    23/03/2026 | 23 min
    In 1988, there were just 42 Walk MS events, raising approximately $4 million. In 2025, there were 170 events across the country that raised over $30 million. As the largest private funder of MS research in the world, the National MS Society relies on funds raised at events like Walk MS to continue supporting the work that brings us closer to cures.
     





    This week, Brigitte Delaney, an amazing fundraiser and captain of the Many Sisters Walk MS team, shares her story, talks about the origin of the Many Sisters team, and offers her recipe for successful fundraising.
    We're also sharing study results that show adhering to the MIND diet slows brain aging (and we'll explain why that matters to someone living with MS)
    We'll tell you about NG01, a remyelinating cell therapy that just received an FDA designation that will accelerate its development.
    You'll learn about CoPilot Health, Microsoft's new AI health chatbot.
    And we're sharing study results that indicate people who receive their MS diagnosis over the age of 50 tend to experience a more severe MS disease course.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: It's WALK MS!  :22
    Study results show that adherence to the MIND diet slows brain aging  1:24
    The FDA grants a designation that accelerates development of a remyelinating cell therapy  4:42
    Microsoft launches CoPilot Health, an AI health chatbot  7:17 
    Study results indicate that people who are diagnosed over the age of 50 often experience a more severe MS disease course  9:32
    Brigitte Delaney introduces us to the Many Sisters WALK MS team  12:07
    Share this episode  22:28
    Next week  22:48

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/447
    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
    Support Jon at WALK MS
    https://realtalkms.com/walkms

    JOIN: Become an MS Activist
    https://nationalmssociety.org/advocacy
    STUDY: Adherence to the MIND Diet and Longitudinal Brain Structural Changes Over a Decade: Evidence from the Framingham Heart Study Offspring Cohort
    https://jnnp.bmj.com/content/early/2026/3/11/jnnp-2025-336957
    STUDY: Effect of Late-Onset on Multiple Sclerosis Phenotype and Outcome: Evidence from a Multi-National Registry
    https:/link.springer.com/article/10.1007/s00415-026-13632-4

    JOIN: The RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    REVIEW: Give RealTalk MS a rating and review
    http://www.realtalkms.com/review

    Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
    RealTalk MS Episode 447
    Guests: Brigitte Delaney
    Privacy Policy
  • RealTalk MS

    Episode 446: MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern

    16/03/2026 | 34 min
    175 MS activists are heading to Washington, D.C. next week for the National MS Society's Public Policy Conference. Their mission: to bring the concerns of the MS community directly to lawmakers on Capitol Hill. 





    When it comes to the legislative support for healthcare and medical research, it's no secret that these are unusual times. Joining me to brief us on the National MS Society's ongoing advocacy efforts and give us a sneak peek at the specific legislative issues we'll be taking to Capitol Hill is the National MS Society's Vice President of Advocacy, Steffany Stern.
    We'll also share updated results from an important study that show the risk of developing MS if a close relative is living with the disease is significantly higher than researchers originally thought.
    And we'll give you all the details of a Phase 1 clinical trial that's focused on a novel approach to CAR-T cell therapy for MS.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: Preparing for the MS Society's Public Policy Conference  :22
    I'm asking for your support:  1:37
    An update to a 2015 study shows close relatives of people living with MS are 100 times more likely than the general population to develop MS  2:15
    A novel approach to CAR-T cell therapy for MS is recruiting for a Phase 1 clinical trial   4:26
    Steffany Stern, the Vice President of Research at the National MS Society, shares a major advocacy win and previews next week's Public Policy Conference in Washington, D.C.  7:27
    Share this episode  33:04
    Next week  33:25

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/446
    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
    Support Jon at WALK MS
    https://realtalkms.com/walkms

    JOIN: Become an MS Activist
    https://nationalmssociety.org/advocacy
    STUDY: A Prospective Study of Individuals at Risk of Multiple Sclerosis Informs the Design of Primary Prevention Studies
    https://onlinelibrary.wiley.com/doi/10.1002/acn3.70340
    GEMS Study Recruitment
    https:/nationalmssociety.org/news-and-magazine/news/ms-study-alert-gems

    RealTalk MS Ep. 439: Preventing MS with Dr. Bruce Bebo
    https://realtalkms.com/439
    PARTICIPATE: A Study to Assess the Safety and Clinical of Azer-cel in Participants with B-cell Mediated Autoimmune Disorders
    https://clinicaltrials.gov/study/NCT06680037/#contacts-and-locations
    JOIN: The RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    REVIEW: 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 446
    Guests: Steffany Stern
    Privacy Policy
  • RealTalk MS

    Episode 445: It's MS Awareness Week with Kristine Werner Ozug and Kim, Kim, and Kim

    09/03/2026 | 40 min
    It's MS Awareness Week, and this year we're diving into a theme that hits home for millions: Unseen MS. Multiple sclerosis is a master of disguise; it can be entirely invisible to the naked eye while remaining profoundly life-altering for the person living it. In this episode, we're exploring the spectrum of the MS experience through two distinct, yet deeply connected stories. 






    First, you'll hear from RealTalk MS team member Kristine Werner Ozug. Kristine shares what it's like to navigate a world that doesn't always see her struggle, and how her "mostly invisible" MS  symptoms still dictate the rhythm of her daily life.
    Then, you'll meet the two Kims (and a third). Kim W and Kim P, have been together for 16 years. They both live with MS—but in very different ways. While Kim P has navigated RRMS for 18 years with largely invisible symptoms, Kim W was diagnosed with PPMS just three years ago and faces much more visible physical challenges.
    Joining our conversation with Kim and Kim is Kim Fredsall, a physical therapist at Gaylord Specialty Healthcare, who provides expert context on bridging the gap between diagnosis and daily management.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: It's MS Awareness Week  :22
    Kristine Werner Ozug shares her story  1:24
    Kim W. and Kim P. share their story 24:49
    Share this episode  39:14
    Next week  39:34

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/445
    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
    Support Jon at WALK MS
    https://realtalkms.com/walkms

    JOIN: The RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    REVIEW: 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 445
    Guests: Kristine Werner Ozug, Kim P, Kim W, and Kim Fredsall
    Privacy Policy

Altri podcast di Medicina

Su RealTalk MS

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