Couverture de SRNA Soundwaves (previously Ask the Expert)

SRNA Soundwaves (previously Ask the Expert)

SRNA Soundwaves (previously Ask the Expert)

De : Siegel Rare Neuroimmune Association (SRNA)
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SRNA Soundwaves is a podcast network that brings together expert insight, research updates, and experiences from the rare neuroimmune disorder community. Through multiple series, SRNA Soundwaves connects those living with rare neuroimmune disorders, caregivers, clinicians, and researchers with trusted information and meaningful conversations that educate, empower, and inspire. Topics include acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM).062634 Hygiène et vie saine Maladie et pathologies physiques
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    Épisodes
    • ABCs of MOGAD 301. Significance of Brain Lesions in Pediatric MOGAD
      Jan 19 2026

      In this episode, Krissy Dilger of SRNA interviewed Dr. Vivien Xie regarding the significance of brain lesions in pediatric MOG antibody disease (MOGAD). Dr. Xie explained the autoimmune nature of MOGAD and the common occurrence of optic neuritis in young patients [00:01:28]. She described her study comparing children with optic neuritis who had brain lesions to those who did not, revealing that brain lesions often did not result in additional symptoms [00:02:41]. The findings suggested that brain lesions didn't significantly impact long-term outcomes, which may provide reassurance for patients with concerning MRI results [00:06:43]. Finally, they discussed the study’s implications for better understanding different phenotypes of MOGAD and improving patient prognosis. Future research directions include more detailed MRI analysis and cognitive outcome assessment [00:12:29].


      Vivien Xie, MD, is a pediatric neurologist and neuroimmunology fellow at Children’s National Hospital and MedStar Georgetown University Hospital. Originally from Baltimore, she earned her undergraduate degree in biology from the University of Maryland, College Park and her medical degree from the University of Maryland School of Medicine. She then completed a child neurology residency at Children’s National Hospital, where she discovered a passion for helping young patients and their families navigate rare and often life-long neuroimmunologic disorders.


      Dr. Xie's research interests include pediatric multiple sclerosis and MOG antibody–associated disease, with publications and presentations spanning national and international conferences. She is a committed academic clinician dedicated to advancing clinical trials and research initiatives to improve diagnosis and care for children with rare neuroimmunologic conditions.


      00:00 Introduction

      01:28 Understanding MOG Antibody Disease

      02:41 Research Motivation and Background

      05:33 Study Design and Methodology

      06:43 Key Findings and Implications

      12:29 Future Research Directions

      14:10 Conclusion and Acknowledgements

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      17 min
    • ABCs of MOGAD 0201. Steroid Dependence
      Dec 15 2025

      In this "ABCs of MOGAD" episode, "Steroid Dependence," Krissy Dilger of SRNA was joined by Dr. Eoin Flanagan from the Mayo Clinic in Rochester, MN. They began with a summary of how steroids are used to manage MOG antibody disease, particularly during acute attacks [00:01:25]. Dr. Flanagan described the mechanics of steroids in reducing brain inflammation and the importance of early treatment [00:04:14]. They discussed the concept of steroid dependence and the complications that arise when tapering down the steroid dose [00:05:46]. Dr. Flanagan highlighted alternative treatments to manage steroid dependence and emphasized the importance of working closely with healthcare providers to safely reduce steroid use over time [00:09:42].


      Eoin Flanagan, MB, BCh is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He completed his medical school training at University College Dublin in Ireland in 2005. He did a medical residency in Ireland and then completed neurology residency, fellowships in neuroimmunology and a master's in clinical and translational science at Mayo Clinic (Rochester, MN). He works in the Autoimmune Neurology and Multiple Sclerosis Clinics and the Neuroimmunology Laboratory at the Mayo Clinic.


      His clinical expertise and research are focused on inflammatory myelopathies and their imaging patterns, myelin oligodendrocyte glycoprotein (MOG) antibody associated disorder, neuromyelitis optica spectrum disorders, autoimmune encephalitis, paraneoplastic neurologic disorders, and multiple sclerosis. He is principal investigator on an NIH RO1 grant studying MOG antibody associated disorder.


      00:00 Introduction

      01:25 Understanding Steroids in MOG Antibody Disease

      04:14 Steroid Dosage and Administration

      05:46 Steroid Dependence in MOGAD Patients

      09:42 Managing Steroid Dependence

      14:02 Balancing Inflammation Control and Steroid Risks

      17:31 Conclusion

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      21 min
    • Jan. 5, 2026, the "Ask the Expert" podcast channel will be renamed “SRNA Soundwaves”
      Dec 5 2025

      BIG ANNOUNCEMENT! Beginning January 5, 2026, SRNA is bringing all five of our podcast series together into a single, unified podcast channel called “SRNA Soundwaves.” This means that all episodes of "Ask the Expert, ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, and Community Meets Clinic" - past and present - will now be found in one feed on Apple Podcasts, Spotify, and other podcast streaming platforms.


      What this means for you: If you are already subscribed to our "Ask the Expert" series, you will automatically be subscribed to "SRNA Soundwaves" once the merge happens on January 5th. If you are subscribed to "ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, or Community Meets Clinic," make sure to subscribe to "Ask the Expert," which will be renamed “SRNA Soundwaves” on January 5th, to continue to get new episodes in your feed. You can subscribe here: https://creators.spotify.com/pod/profile/srna-ask-the-expert/


      We hope this change helps our community navigate our educational content more easily and enjoy a smoother, more organized podcast experience. If you have questions about the upcoming change, please email: podcast@wearesrna.org

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      1 min
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