Episodes

  • 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, Dr. Mary Rensel and Amanda Montague join me to explore HCP (Healthcare Provider) burnout and patient empowerment; and we'll be taking a close look at how patients and their healthcare providers can work together to support one another.

    Dr. Mary Rensel is an Assistant Professor of Medicine at the Cleveland Clinic Lerner College of Medicine and Director of Pediatric Multiple Sclerosis and Wellness at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic.

    Amanda Montague is a global thought leader and Chief Mission Officer at the Multiple Sclerosis Association of America. Amanda is also an active member of the MS in the 21st Century initiative, more commonly known as MS21. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals, or HCPs, and patient advocates.

    To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.

  • There's an alarming shortage of neurologists in the United States. That shortage makes it hard to be seen by a neurologist and, in some regions of the U.S., you may not even find an MS specialist without having to travel hundreds of miles. The good news is now there's an app for that!

    Joining me to talk about how an app called BeCare is already changing the game when it comes to MS care is the Chief Medical Officer of BeCareLink, Dr. Charisse Litchman.

    The FDA has designated Tolebrutinib as a Breakthrough Therapy for the treatment of adults with non-relapsing secondary progressive MS. We're sharing the details.

    We'll tell you where you can participate in a phase 2 clinical trial that's designed to test the efficacy of Foralumab, an investigational disease-modifying therapy formulated as a nasal spray, among adults with non-relapsing secondary progressive MS.

    We'll share the details of a report that provides some frustrating data about out-of-pocket costs for MS prescription medications.

    Dr. Alicyn Magruder reviews the risks and benefits of using off-label medications to manage MS.

    And we'll share the results of a study that focused on how socioeconomic status impacts disease severity among kids and teens living with MS.

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

    This Week: An app that can tell you if your MS is worsening :22

    FDA awards Tolebrutinib Breakthrough Therapy designation 1:04

    Phase 2 clinical trial for Foralumab adds 6 additional sites 3:13

    Study compares out-of-pocket costs of MS DMTs with meds for other neurologic conditions 5:55

    Dr. Alicyn Magruder discusses using off-label medications to manage MS 9:51

    Study analyzes the impact of socioeconomic status on disease severity in pediatric-onset MS 15:27

    Dr. Charisse Lichtman explains how the BeCare MS app is changing the game and providing an important bridge to better MS care 19:52

    Share this episode 30:53

    Have you downloaded the free RealTalk MS app? 31:13

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/381

    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

    RealTalk MS on YouTube
    https://www.msif.org/webcast-clinical-trials

    CLINICAL TRIAL: A Study of Nasal Foralumab in Non-Active Secondary Progressive Multiple Sclerosis Patients
    https://clinicaltrials.gov/study/NCT06292923

    STUDY: Costs Are Still On the Rise for Commonly Prescribed Branded Neurologic Medications
    https://neurology.org/doi/10.1212/WNL.0000000000210029

    STUDY: Association of Social Determinants of Health with Brain MRI Outcomes in Individuals with Pediatric Onset Multiple Sclerosis
    https://neurology.org/doi/10.1212/WNL.0000000000210140

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

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    https://itunes.apple.com/us/app/realtalk-ms/id1436917200

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    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

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    RealTalk MS Episode 381
    Guests: Dr. Alicyn Magruder, Dr. Charisse Litchman

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  • If you're living with MS, you've probably already learned that hot weather, hot baths, or anything that causes your body temperature to increase can quickly cause your symptoms to worsen. But winter can also be a challenging time. Less daylight, frigid temperatures, ice, and snow can all have an impact on MS.

    Dr. Lisa Doggett returns to the podcast with tips and strategies for enjoying winter while staying healthy, safe, and warm.

    We'll also remind you that the International Progressive MS Alliance global webcast is happening tomorrow -- Dec. 11th! And we'll share the details you'll need to sign up.

    We'll tell you about study results from Sweden that show that experiencing serious COVID-19 makes it twice as likely that someone will develop MS. (And we'll tell you why those study results aren't as scary as they may sound!)

    We're sharing research that has uncovered evidence of nerve damage in the central nervous system up to 9 years before someone experiences MS symptoms.

    We'll tell you about a team of biomedical engineers who are creating a tiny implantable device that will warn you if your MS is worsening or if you're heading for a relapse.

    And if you're over 55, you're living with MS, and you have 15 minutes to spare, we'll tell you about an online survey that we hope you'll decide to participate in.

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

    This Week: Winning against winter when you're living with MS :22

    Don't miss the International Progressive MS Alliance global webcast on Dec. 11 1:46

    A study shows that serious COVID-19 doubles the likelihood that someone will develop MS 2:42

    Research reveals that nerve damage can occur in the central nervous system up to 9 years before you can experience any symptoms of MS 6:13

    Imagine a tiny device implanted in your arm that can alert you if your MS is worsening or you're headed for a relapse 8:48

    If you're 55 years old or older and you've been diagnosed with MS, there's a survey just for you 10:56

    Dr. Lisa Doggett shares tips and strategies for thriving in cold weather when you're living with MS 12:29

    Share this episode 26:14

    Have you downloaded the free RealTalk MS app? 26:33

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/380

    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 FOR THE WEBCAST: What We're Learning from Clinical Trials
    https://www.msif.org/webcast-clinical-trials

    STUDY: SARS-CoV-2 Infection and Risk of Subsequent Demyelinating Diseases: National Register-Based Cohort Study
    https://academic.oup.com/braincomms/article/6/6/fcae406/7909395

    STUDY: Temporal Dynamics of Plasma Neurofilament Light In Blood Donors with Preclinical Multiple Sclerosis
    https://neurology.org/doi/10.1212/NXI.0000000000200335

    SURVEY: If you are 55 years old or older and living with MS, please complete
    https://illinois.qualtrics.com/jfe/form/SV_5oM7xmdpdSphTiC

    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 Devices
    https://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 380
    Guests: Dr. Lisa Doggett

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  • Disease-modifying therapies work, and, as a result, people with MS are living longer. With half the MS population over the age of 55, it's never been more urgent to understand how the process of aging impacts MS and how MS impacts the process of aging. In this special episode of RealTalk MS, Dr. Leorah Freeman discusses the many factors associated with aging with MS.

    This special episode of RealTalk MS is sponsored by Viatris.

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/V202

    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 Devices
    https://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 V202
    Guests: Dr. Leorah Freeman

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  • More effective treatments and even cures for MS can only happen as a result of clinical research. And clinical research can only happen when people living with MS choose to become research participants. But what are the pros and cons that you should consider when you're thinking about participating in MS research?

    The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, returns to the podcast to discuss the risks and benefits of participating in clinical research. We're also joined by Mimi Brown, who lives with primary progressive MS. Mimi will share her experiences as a participant in several MS research studies.

    We'll also remember Professor Giancarlo Comi, a true giant in the MS research community who passed away last week.

    We'll discuss the updated Brain Health -- Time Matters report.

    We'll tell you about a research collaboration between the National MS Society, Breakthrough T1D (formerly the Juvenile Diabetes Research Foundation), and the Lupus Research Alliance.

    And we're sharing the details about the International Progressive MS Alliance's upcoming global webcast.

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

    Remembering Professor Giancarlo Comi :22

    This Week: Participating in MS research 3:28

    Experts release the Brain Health -- Time Matters report 4:10

    The National MS Society teams up with Breakthrough T1D and the Lupus Research Alliance to fund research in common mechanisms that drive autoimmunity 6:35

    The International Progressive MS Alliance is hosting a global webcast on Dec. 11 9:27

    Dr. Kathy Zackowski and Mimi Brown discuss the risks and benefits of participating in MS research 10:58

    Share this episode 29:52

    Have you downloaded the free RealTalk MS app? 30:11

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/379

    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

    REPORT: Brain Health -- Time Matters
    https://www.msbrainhealth.org/wp-content/uploads/2024/09/Brain-Health-Time-Matters-2024.pdf

    VIDEO: Brain Health -- Time Matters
    https://www.msbrainhealth.org/launch-videos

    Decoding Immunity: Common Mechanisms of Autoimmunity
    https://decodingautoimmunity.org

    REGISTER FOR THE WEBCAST: What We're Learning from Clinical Trials
    https://www.msif.org/webcast-clinical-trials

    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 Devices
    https://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 379
    Guests: Dr. Kathy Zackowski and Mimi Brown

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  • Too often, care partners remain invisible as they deal with the emotional, physical, and even financial burdens that go along with supporting a loved one who's living with multiple sclerosis.

    November is National Family Caregivers Month, and I'm devoting this entire episode to a roundtable discussion with four remarkable care partners as they share their insights, experiences, and lessons learned caring for a loved one with MS. You won't want to miss my conversation with Barbara, Marina, Maiya, and Matt.

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

    Giving thanks :22

    This Week: A roundtable discussion with four amazing MS care partners 1:31

    Barbara, Marina, Maiya, and Matt discuss their roles as care partners 1:58

    Share this episode 33:22

    Have you downloaded the free RealTalk MS app? 33:43

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/378

    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

    The MS Care Partner Connection
    https://mscarepartnerconnection.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 Devices
    https://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 378
    Guests: Barbara, Marina, Maiya, and Matt

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  • There are some people who, once you meet them, it's impossible to forget them. They seem to leave an indelible impression. Lydia Emily is one of those people. Whether it's through her art that occasionally escapes the canvas to be expressed as massive urban murals proclaiming End MS, or through her outspoken MS advocacy. Lydia Emily is a force. Now, along with co-author Lenlee Keep, Lydia Emily has channeled that energy into a book entitled, The Art of Hope: The Life and Art of Lydia Emily.

    Lydia Emily and her co-author, Lenlee Keep, join me this week to talk about the process of writing the book and some of the issues affecting people with MS that Lydia Emily is passionate about.

    We'll also tell you about study results that provide an answer to how nerve cells die in MS.

    We'll share results from a study that shows MS progression may not be directly connected to the number of lesions someone may have.

    And we'll tell you about research that provides evidence for continuing your MS disease-modifying therapy, no matter your age.

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

    This Week: The Art of Hope :22

    A study uses a novel mouse model to explain how nerve cells die in MS 2:17

    Study results show that MS progression may have less to do with the number of lesions and more to do with what's happening inside those lesions 5:23

    Study results provide evidence for continuing your DMT, even as you age 9:15

    Artist Lydia Emily and co-author Lenlee Keep discuss The Art of Hope: The Life and Art of Lydia Emily 14:17

    Share this episode 34:50

    Have you downloaded the free RealTalk MS app? 35:11

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/377

    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: Remyelination Protects Neurons from DLK-Mediated Neurodegeneration
    https://www.nature.com/articles/s41467-024-53429-5

    STUDY: Advanced MRI Measures of Myelin and Axon Volume Identify Repair in Multiple Sclerosis
    https://onlinelibrary.wiley.com/doi/10.1002/ana.27102

    STUDY: Impact of Discontinuing Disease-Modifying Therapies On Healthcare Utilization Among Midlife Patients with Multiple Sclerosis in the United States
    https://www.jmcp.org/doi/10.18553/jmcp.2024.30.11.1248

    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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    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

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

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    RealTalk MS Episode 377
    Guests: Lydia Emily and Lenlee Keep

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  • MS affects almost 3 times as many women as men, often affecting women of childbearing age. In this special episode of RealTalk MS, Dr. Riley Bove answers some of the important questions about the impact of MS on a woman's pregnancy and the impact of pregnancy on a woman's MS.

    This special episode of RealTalk MS is sponsored by Viatris.

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/V201

    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 Devices
    https://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 V201
    Guests: Dr. Riley Bove

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  • On this podcast, we tend to talk a lot about new technologies, emerging treatments, the most recently approved disease-modifying therapies, and even some DMTs that haven't yet been approved. And in the midst of all that cutting-edge research and evolving science, it's easy to lose sight of the fact that expressive therapies like dance and movement therapy, music therapy, and art therapy have all been shown to help promote self-efficacy, emotional well-being, and motor control in people living with MS.

    Dr. Francois Bethoux joins me on today's episode to discuss the benefits of integrating dance and movement therapy, music therapy, and art therapy into your treatment plan to help manage your MS symptoms and enhance your well-being.

    November is National Family Caregivers Month, and we're sharing a neat piece of tech that can not only make life easier for MS caregivers but can make life better for their care recipients, as well. CEO Costin Tuculescu introduces us to his company's new device, OnScreen.

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

    This Week: Adding expressive therapies to your MS treatment plan :22

    OnScreen CEO Costin Tuculescu explains how OnScreen can help people with MS and their caregivers 1:34

    Dr. Francoi Bethoux discusses the benefits of dance therapy, music therapy, and art therapy for people living with MS 17:45

    Share this episode 31:47

    Have you downloaded the free RealTalk MS app? 32:06

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/376

    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

    OnScreen
    https://onscreeninc.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 Devices
    https://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 376
    Guests: Costin Tuculescu and Dr. Francois Bethoux

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  • Being a teenager is hard. So, imagine for a moment that in addition to everything else that teenagers have to endure, you're a teenager who's been diagnosed with MS. Your ability to participate in after-school activities or just hang out with your friends is impacted by MS-related fatigue. The typical adolescent anxiety over something someone posted on social media evolves into depression. And cognitive issues begin to make it harder for you in the classroom. This is an unfortunate reality for many adolescents who are living with MS.

    Joining me to discuss how MS affects adolescents and how families can help manage MS is Dr. Ann Yeh. Dr. Yeh is a Professor of Pediatric Neurology at the University of Toronto and the director of the MS and Neuroinflammatory Disorders Program and Fellowship Program at the University of Toronto's Hospital for Sick Children, known as SickKids.

    We'll also tell you about a new online resource for MS care partners.

    We'll share the results of a study that explored how different symptom management responsibilities impact MS care partners.

    We'll share details of a study that demonstrated positive results in improving MS-related fatigue.

    We'll tell you about the discovery of a plant-based molecule that is showing promise in promoting myelin repair.

    And we're sharing surprising research results that have more than doubled the prevalence of MS in Australia.

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

    This Week: Managing Teenage MS :22

    November is National Family Caregivers Month 1:47

    You're invited to preview MS Care Partner Connection 3:40

    A study reveals the most challenging MS symptoms for care partners to manage 6:33

    Study results show Modafinil and cognitive behavioral therapy are both effective in managing MS fatigue 7:25

    Researchers discover a plant-based molecule that may be effective in promoting myelin repair 9:46

    Prevalence of MS in Australia more than doubled over an 11-year period 12:54

    Dr. Ann Yeh discusses the challenges of MS among adolescents 16:05

    Share this episode 31:15

    Have you downloaded the free RealTalk MS app? 31:36

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/375

    ADD YOUR VOICE TO THE CONVERSATION

    I've always considered the RealTalk MS podcast a conversation. 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

    The MS Care Partner Connection
    https://mscarepartnerconnection.com

    Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol
    https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis

    STUDY: Symptom Management Among Multiple Sclerosis Care Partners in Canada
    https://meridian.allenpress.com/ijmsc/article/25/6/281/496792/Symptom-Management-Among-Multiple-Sclerosis-Care

    STUDY: Comparative Effectiveness of Cognitive Behavioural Therapy, Modafinil, and Their Combination for Treating Fatigue in Multiple Sclerosis (COMBO-MS): A Randomised, Statistician-Blinded, Parallel-Arm Trial
    https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00354-5/abstract

    STUDY: Distinct Chemical Structures Inhibit the CEMIP Hyaluronidase and Promote Oligodendrocyte Progenitor Cell Maturation
    https://www.jbc.org/article/S0021-9258(24)02418-9/fulltext

    STUDY: Significantly Increasing Multiple Sclerosis Prevalence in Australia from 2010 to 2021
    https://journals.sagepub.com/doi/10.1177/13524585241265890

    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 Devices
    https://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 375
    Guest: Dr. Ann Yeh

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  • Learning to live with MS is learning to live with loss. For some, those losses may be minor and seem relatively insignificant. For others, those losses can be huge and life-altering. The definition of grief is an emotional response to a significant loss. It's not unusual to grieve over those things in your life that have been lost due to MS. In fact, healthy grieving is a necessary emotional step to moving forward in life.

    Dr. Holly Hendin, a faculty physician and psychiatrist at St. Joseph’s Hospital Medical Group Outpatient Behavioral Health in Phoenix, Arizona, joins me to explore grieving when you live with MS.

    We'll also share the results of a study that show other health conditions can have a negative impact on MS disease activity, like relapses and disability worsening.

    And we're sharing the details of the $4.6 million dollar investment the National MS Society is making in research focused on myelin repair.

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

    This Week: Grieving when you're living with MS :22

    A study shows how other health conditions may cause MS to worsen 2:00

    The National MS Society is investing $4.6 million dollars in research focused on myelin repair 6:21

    Dr. Holly Hendin helps us understand the importance of healthy grieving when you're living with MS 9:39

    Share this episode 35:30

    Have you downloaded the free RealTalk MS app? 35:50

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    Just copy this link & paste it into your text or email: https://realtalkms.com/374

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    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: Comorbidity and Disease Activity in Multiple Sclerosis
    https://jamanetwork.com/journals/jamaneurology/fullarticle/2823966

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    RealTalk MS Episode 374
    Guest: Dr. Holly Hendin

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  • Now that he's had a chance to digest all of the research presented at ECTRIMS, Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research, is back to share the key research presented at the largest MS research conference in the world.

    This episode of RealTalk MS is the perfect follow-up to my initial conversation with Bruce, which occurred just minutes after ECTRIMS ended. (If you missed our conversation, you may want to check out Episode 369 of RealTalk MS.)

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

    This Week: Part 2 of our coverage of ECTRIMS 2024 :22

    Dr. Bruce Bebo shares the key research presented at ECTRIMS 1:06

    Share this episode 26:13

    Have you downloaded the free RealTalk MS app? 26:31

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/373

    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

    RealTalk MS Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo
    https://realtalkms.com/369

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    RealTalk MS Episode 373
    Guest: Dr. Bruce Bebo

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  • Open enrollment is underway! And if you're one of the 25% of people living with MS who get their coverage through Medicare, there are some major changes coming in 2025. So, it's especially important that you review your prescription drug coverage to make sure you're enrolled in the Medicare Part D plan that's best for you.

    Sarah Anderson, pharmacist and senior director of clinical resources and programming at the National MS Society, joins me to help us decipher those changes and navigate the sometimes confusing world of health insurance.

    We'll also tell you about a research team that's editing human DNA to promote myelin repair.

    We'll share the results of a study that offers some surprising evidence about the quality of MS care for women in France.

    We'll explain why a study that shows people with MS are at a higher risk for being diagnosed with cancer may not be as scary as it sounds.

    In my conversation with Dawn Schottlandt, you'll hear the story of In My Running Shoes and learn how people with MS and other disabilities can benefit from their work.

    And we'll give you all the details about artist Elizabeth Jameson's exhibition, An Intimate Journey, which opens in New York on Saturday, October 19th.

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

    This Week: Open Enrollment has begun :22

    Researchers succeed in editing human DNA to promote myelin repair 1:14

    Research reveals women with MS are often undertreated in France 3:38

    Are people with MS more likely to develop cancer? 6:18

    Dawn Schottlandt explains why she founded In My Running Shoes and how you might benefit 9:12

    Elizabeth Jameson's art exhibition, An Intimate Journey, opens in New York on Saturday 16:01

    Sarah Anderson explains the changes to Medicare in 2025 18:04

    Share this episode 27:56

    Have you downloaded the free RealTalk MS app? 28:16

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/372

    ADD YOUR VOICE TO THE CONVERSATION

    I've always considered the RealTalk MS podcast a conversation. 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: CRISPR-Edited ES-Derived Oligodendrocyte Progenitor Cells Improve Remyelination in Rodents
    https://www.nature.com/articles/s41467-024-52444-w

    STUDY: Cancer Risk Among Patients with Multiple Sclerosis
    https://www.neurology.org/doi/10.1212/WNL.0000000000209885

    In My Running Shoes
    https://inmyrunninigshoes.org

    Elizabeth Jameson exhibition at the Positive Exposure Gallery
    https://positiveexposure.org/event/41014

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

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    RealTalk MS Episode 372
    Guests: Dawn Schottlandt and Sarah Anderson

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  • In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker.

    One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And Dee's initial DM led to my conversation with Dee and the inventor of the Alinker, a true difference-maker, BE Alink.

    The National MS Society's 3rd annual Hispanic/Latinx MS Experience Summit is just two days away! We're sharing all the details, including how you can register for this free virtual event.

    And I'm sharing my thoughts following attending the University of Pittsburgh's bi-annual caregiver research conference.

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

    The Hispanic/Latinx MS Experience Summit is two days away! :22

    Don't miss our ECTRIMS Extra Conversations 1:38

    Thoughts following attending the caregiver research conference at the University of Pittsburgh 2:15

    Dee and BE discuss all things Alinker (including how you can get yours!) 9:26

    Share this episode 37:02

    Have you downloaded the free RealTalk MS app? 37:23

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/371

    ADD YOUR VOICE TO THE CONVERSATION

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

    Email: [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

    Hispanic/Latinx MS Experience Summit
    https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience

    MS Care Partner Connection
    https://mscarepartnerconnection.com

    The Alinker
    https://thealinker.com

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

    Download the RealTalk MS App for iOS Devices
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    RealTalk MS Episode 371
    Guests: Dee Ecklund and BE Alink

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  • With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.

    During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh.

    Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael’s Hospital in Ontario, Canada. Dr. Oh is also the Principal Investigator in Gemini, the Phase 3 clinical trial for Tolebrutinib and relapsing-remitting MS.

    At ECTRIMS, Dr. Oh shared the outcome of the Gemini clinical trial.

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

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims244

    ADD YOUR VOICE TO THE CONVERSATION

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

    Email: [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 Devices
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    RealTalk MS ECTRIMS Extra
    Guest: Dr. Jiwon Oh

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  • In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in Episode 125 of RealTalk MS.

    The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In Episodes 297and 298 of RealTalk MS, I shared news and interviews from what I described as yet another historic meeting.

    The Pathways to Cures Research Roadmap has been updated, and I'm devoting this week's episode of RealTalk MS to my conversation with the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and the MS Society's Vice-President of Global Initiatives, Shawna Golden, to bring us up to date on how this global MS research initiative has been refined and enhanced and how it's resetting the global MS research agenda.

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

    This Week: The Pathways to Cures research roadmap has been updated :22

    Dr. Bruce Bebo and Shawna Golden discuss the refined and enhanced Pathways to Cures research roadmap 2:34

    Share this episode 29:58

    Have you downloaded the free RealTalk MS app? 30:18

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/370

    ADD YOUR VOICE TO THE CONVERSATION

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

    Email: [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

    RealTalk MS Episode 125: From the Pathways to Cures Think Tank
    https://realtalkms.com/125

    RealTalk MS Episode 297: From the Pathways to Cures Global Summit (Part 1)
    https://realtalkms.com/297

    RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2)
    https://realtalkms.com/298

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

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

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    RealTalk MS Episode 370
    Guests: Dr. Bruce Bebo, Shawna Golden

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  • With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.

    During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Peter Calabresi.

    Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine. He is the principal investigator on several clinical trials and oversees research projects focused on developing new anti-inflammatory and neuroprotective therapies for MS.

    At ECTRIMS, Dr. Calabresi co-chaired what was probably the most highly anticipated presentation at this year's conference: the unveiling of updated criteria for diagnosing MS.

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

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims243

    ADD YOUR VOICE TO THE CONVERSATION

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

    Email: [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 Devices
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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 ECTRIMS Extra
    Guest: Dr. Peter Calabresi

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  • With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.

    During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Rachel Horne and Professor Kerstin Hellwig.

    Professor Kerstin Hellwig is the 2024 recipient of the Rachel Horne Prize for Women's Research in MS. Professor Hellwig was honored at ECTRIMS for her pioneering research into understanding and navigating the safety of approved treatments for women with MS before, during, and after pregnancy.

    Professor Hellwig is a senior consultant at St Josef Hospital, Ruhr University, Bochum, Germany, specializing in MS and neuroimmunology, and is a leading clinician-scientist in the field of MS and family planning.

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

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims242

    ADD YOUR VOICE TO THE CONVERSATION

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

    Email: [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 Devices
    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

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

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    RealTalk MS ECTRIMS Extra
    Guests: Rachel Horne, Professor Kerstin Hellwig

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  • ECTRIMS 2024, the largest MS research conference in the world concluded last week, and in this week's episode, we'll be hearing two slightly different perspectives on which news, announcements, and presentations stood out at this year's meeting.

    The ECTRIMS conference can feel almost overwhelming. You find yourself among 9 or 10 thousand other attendees, trying to determine which of the more than 1700 scientific presentations you want to learn more about. It's both a marathon and a sprint that seem to be taking place simultaneously.

    Kristine Werner Ozug is a member of the RealTalk MS team and a person who lives with MS. This week, Kristine shares her perspective on attending ECTRIMS for the first time.

    At the conclusion of ECTRIMS, you can almost hear a collective sigh coming from all the attendees. It feels like you've crossed the finish line, but now the work of sorting and processing all that you've seen, heard, and read over what feels like a non-stop 72-hour blur actually begins.

    Joining me to share his initial thoughts on the ECTRIMS news that caught his eye is the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo.

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

    This Week: ECTRIMS 2024 :22

    It's our 7th anniversary! 1:28

    Kristine Werner Ozug shares a patient's perspective on attending the largest MS research conference in the world 3:56

    Dr. Bruce Bebo shares the news and announcements that caught his eye at ECTRIMS 17:19

    Share this episode 28:59

    Have you downloaded the free RealTalk MS app? 29:19

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/369

    ADD YOUR VOICE TO THE CONVERSATION

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

    Email: [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 Devices
    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

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

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

    RealTalk MS Episode 369
    Guests: Kristine Werner Ozug, Dr. Bruce Bebo

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  • With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.

    During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Fred Lublin.

    Dr. Fred Lublin is the Director of the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai. He participated in the development of the very first disease-modifying therapy that was approved for MS. When we talk about relapsing-remitting MS, secondary-progressive MS, or primary-progressive MS, we're using the clinical course descriptions of MS that were developed and subsequently updated by Dr. Lublin and his colleagues.

    At ECTRIMS, Dr. Lublin gave a presentation on the need to update the way we think about and talk about multiple sclerosis by, once again, updating those clinical course descriptors.

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

    SHARE THIS EPISODE OF REALTALK MS

    Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims241

    ADD YOUR VOICE TO THE CONVERSATI

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

    Email: [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 Devices
    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

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

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

    RealTalk MS ECTRIMS Extra
    Guest: Dr. Fred Lublin

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