SRNA Soundwaves (previously Ask the Expert)

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).

  1. ABCs of MOGAD 301. Significance of Brain Lesions in Pediatric MOGAD

    JAN 19

    ABCs of MOGAD 301. Significance of Brain Lesions in Pediatric MOGAD

    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]. You can read about this multicenter study here: https://pubmed.ncbi.nlm.nih.gov/41167051/. This work was completed with philanthropic support from the Global Autoimmune Institute and Fighting Fires with Owen. 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

    17 min
  2. ABCs of MOGAD 0201. Steroid Dependence

    12/15/2025

    ABCs of MOGAD 0201. Steroid Dependence

    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

    21 min

  3. 12/05/2025 · BONUS

    Jan. 5, 2026, the "Ask the Expert" podcast channel will be renamed “SRNA Soundwaves”

    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

    1 min
  4. Community Meets Clinic 205. Dr. Alexandra Kornbluh

    12/01/2025

    Community Meets Clinic 205. Dr. Alexandra Kornbluh

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA interviewed Dr. Alexandra Kornbluh from Children's National Hospital in Washington, D.C. about her role and journey into neurology and neuroimmunology. Dr. Kornbluh discussed her interest in the fast-paced nature of neuroimmunology and her involvement in clinical research, particularly in MOG antibody disease (MOGAD) [00:01:32]. She elaborated on the multidisciplinary approach at Children's National Hospital that supports comprehensive care and ongoing research for pediatric neuroimmune disorders [00:04:58]. Dr. Kornbluh emphasized her commitment to holistic care and the future advancements in treatment and diagnostics for rare neuroimmune conditions [00:05:44]. Alexandra Kornbluh, MD is Associate Program Director for the Child Neurology residency and Co-Program Director of the Pediatric Neuroimmunology Fellowship at Children’s National Hospital in Washington, D.C. She completed her medical training at the Johns Hopkins School of Medicine and her pediatric and child neurology residency training through Nationwide Children’s Hospital in Columbus, Ohio. She then pursued additional subspecialty fellowship training in pediatric multiple sclerosis and related demyelinating diseases. Through this fellowship, she gained expertise in caring for both children and adults across the age-span of neuroinflammatory diseases at the Children’s Hospital of Philadelphia and the University of Pennsylvania. Dr. Kornbluh sees patients from the greater Washington, D.C., area as well as second opinion consultations for pediatric demyelinating disease and related disorders within the multidisciplinary neuroimmunology program. She also evaluates patients with headaches and provides general neurology care for patients. Dr. Kornbluh serves as the Director of Investigational Therapeutics through the pediatric neuroimmunology program and is the principal investigator for clinical research studies in pediatric demyelinating conditions. Her research interests include pediatric multiple sclerosis (MS), myelin oligodendrocyte glycoprotein antibody-associated disorders (MOGAD), and other related demyelinating conditions. You can view her medical profile here: https://appointments.childrensnational.org/provider/alexandra-behar-kornbluh/2359826 01:32 Dr. Kornbluh's Journey into Neuroimmunology 03:29 Focus on Rare Neuroimmune Disorders 04:58 Children's National Neuroimmunology Clinic 05:44 Multidisciplinary Care Approach 07:31 Personal Insights and Self-Care 08:25 Message to Families and Final Thoughts 09:48 Hope for the Future

    13 min
  5. ABCs of NMOSD 602. NMOSD and Romantic Relationships

    10/13/2025

    ABCs of NMOSD 602. NMOSD and Romantic Relationships

    In this episode of "ABCs of NMOSD," host Landy Thomas, joined by Doug Newby, Heather Dawn Newbie, and Caitlyn Flickinger, discussed the impact of NMOSD on romantic relationships. The guests shared their personal experiences with relationships and how they manage living with NMOSD [00:02:27]. They also addressed how they met, support each other during treatment, and the importance of understanding and patience in relationships [00:09:37]. Finally, they provided advice on dating with a chronic illness and the significance of self-love and finding a supportive partner [00:35:06]. Johnney (Doug) Newby lived most of his life in Colorado, only moving recently to Pennsylvania in the last year. Doug has a background in criminal justice and worked as a security guard the last few years in Colorado. Doug became symptomatic more than ten years ago with neuromyelitis optica spectrum disorder (NMOSD) spending many weeks in and out of hospitals with transverse myelitis (TM) and optic neuritis (ON). Doug is newly married to Heather ,who is also an NMO patient, and they’re making a life together in Pennsylvania along with their dog, Bailey and their cats. Heather Dawn Newby has lived most of her life in Pennsylvania. After earning her bachelor's degree in Environmental Science and her master's degree in Environmental Studies, she returned home to her family’s dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for neuromyelitis optica spectrum disorder (NMOSD) around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly married to Doug, a fellow NMOSD patient, and they are creating a life together in Pennsylvania along with their dog, Bailey and their cats. Caitlyn Flickinger is a care partner to Landy Thomas, her fiancée, who has NMOSD. Starting college at only 14 years of age, Caitlyn is pursuing her bachelor's degree in political science, with minors in sociology and business. A prolific writer, Caitlyn spends most of her free time writing sci-fi books and letters to her soon-to-be wife, dreaming of one day breaking into the industry and getting her work published and in the hands of readers. Caitlyn also serves as president of the UCF student club she and Landy helped establish, called Epoch: A Minecraft SMP. 00:00 Introduction and Guest Bios 02:27 Meet Doug and Heather Newbie 06:22 Meet Landy Thomas and Caitlyn Flickinger 09:37 Doug and Heather's Love Story 14:46 Landy and Caitlyn's Love Story 20:00 Living with NMOSD 25:50 Navigating Relationships with NMOSD 26:38 Commitment and Understanding 29:47 Challenges and Support 35:06 Dating Inside and Outside of the Community 47:00 Advice for NMOSD Patients on Dating 55:17 Final Thoughts and Encouragement

    59 min
  6. Ask the Expert 1312. Parenting is Hard | Part 6

    09/08/2025

    Ask the Expert 1312. Parenting is Hard | Part 6

    In part six of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock, a family therapist from the UK's National Health Service, to discuss the role of siblings in families with a child diagnosed with a rare neuroimmune disorder. Barbara shared findings from her research on how siblings provide crucial support to parents and the positive impacts this has on family dynamics [00:04:31]. They explored the concept of parentification and the importance of assigning age-appropriate tasks to siblings [00:25:10]. Barbara also provided advice on fostering healthy sibling relationships and the significance of open communication [00:35:34]. At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk 00:00 Introduction 00:28 Meet Barbara Babcock 02:08 Theme Four: Support from Siblings 04:31 Siblings' Characteristics and Their Impact 06:57 Voluntary Help from Siblings 25:10 Parentification: Understanding the Concept 36:34 Fostering Healthy Sibling Relationships 39:20 Conclusion and Final Thoughts

    47 min
  7. Community Meets Clinic 204. Dr. Shuvro Roy and Dr. Catherine Otten

    09/01/2025

    Community Meets Clinic 204. Dr. Shuvro Roy and Dr. Catherine Otten

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger moderated a discussion with Dr. Shuvro Roy of the University of Washington and Dr. Catherine Otten of Seattle Children's Hospital. Dr. Otten elaborated on her work with child neurology and pediatric neuroinflammatory disorders, while Dr. Roy discussed his research interests and the complexities of neuroimmunology [00:06:03]. They shared insights into their multidisciplinary clinic teams and how new patients can expect to be integrated into their care systems [00:11:01]. Both doctors highlighted the promising future of treatments for rare neuroimmunologic disorders and shared how they personally manage the emotional toll of their work [00:17:41]. You can view their medical profiles here: https://www.uwmedicine.org/bios/shuvro-roy https://www.seattlechildrens.org/directory/catherine-ellyn-otten/ Shuvro Roy, MD is an Assistant Professor of Neurology at the University of Washington, specializing in neuroimmunology, with a specific focus on multiple sclerosis (MS) and related neuroimmunologic disorders. He is Co-Director of the UW SRNA Center of Excellence for Rare Neuroimmune disorders. He is also a core teaching faculty member for the UW Medicine Multiple Sclerosis Center’s fellowship program, contributing to clinical education and research initiatives like the ECHO MS program in collaboration with the National MS Society. Dr. Roy is actively engaged in projects aimed at improving access to care, addressing healthcare disparities, and enhancing patient safety for individuals living with MS and related conditions. He has co-authored recent research articles in medical journals on a variety of topics, including studies on stiff person syndrome, encephalomyelitis, MOG-antibody disorder, and multiple sclerosis treatment protocols. Dr. Roy is dedicated to helping his patients thrive amid challenging, lifelong neurological conditions. Catherine E. Otten, MD is a Clinical Associate Professor of Neurology at the University of Washington in the Neurology Department, specializing in child neurology and pediatric neuroinflammatory disorders. Dr. Otten is the Neuroimmunology Medical Director at Seattle Children's Hospital where she runs subspecialty programs for patients with rare neuroimmune conditions. She is board-certified in Pediatrics and Neurology. She leads the Pediatric Neuroimmunology clinic serving patients with multiple sclerosis, MOGAD, NMOSD, transverse myelitis, optic neuritis, acute flaccid myelitis, and other neuroimmune conditions. Dr. Otten co-leads the Inflammatory Brain Disorders Clinic, a multidisciplinary hub serving patients with autoimmune encephalitis, autoinflammatory disease, and other forms of brain inflammation. Her work extends across Alaska, where she has provided care in outreach clinics in rural Alaskan communities for the past decade. Her academic work includes collaboration with CDC as a consultant on acute flaccid myelitis, as well as published work on autoimmune encephalitis, demyelinating disease, and other neuroimmune conditions. She is committed to the care of pediatric patients with neuroinflammatory diseases and their families across the Pacific Northwest. 00:00 Introduction 02:01 Journey into Neurology and Neuroimmunology 06:03 Research and Clinical Interests 11:01 Multidisciplinary Clinic Teams 17:41 Self-Care and Wellness 25:04 Future of Rare Neuro Immune Disorders 27:57 Conclusion and Final Thoughts

    31 min
  8. Ask the Expert 1311. Understanding Myelitis: Efforts to Update Diagnostic Criteria

    08/25/2025

    Ask the Expert 1311. Understanding Myelitis: Efforts to Update Diagnostic Criteria

    In this episode of the SRNA "Ask the Expert" podcast moderated by Dr. GG deFiebre, Dr. Kyle Blackburn and Dr. Benjamin Greenberg discussed the need for updated diagnostic criteria for myelitis. Dr. Blackburn explained the term myelitis and the importance of precise terminologies for accurate diagnoses and research [00:05:10]. Dr. Greenberg elaborated on the advancements in testing and understanding of associated disorders like NMOSD and MOGAD since 2002 [00:11:10]. Both experts stated that the shift from "transverse myelitis" to "myelitis" will aid future research, treatments, and patient care [00:17:27]. They reassured patients that these changes would essentially refine their care but not alter it dramatically [00:23:40]. They encouraged patients to stay informed and communicate with their healthcare providers about these updates [00:28:58]. Kyle Blackburn, MD is an Assistant Professor in the Department of Neurology at UT Southwestern Medical Center in Dallas, Texas. He specializes in neuroimmunology and has clinical interests in antibody-mediated neurologic disorders, including autoimmune encephalitis, epilepsy, and ataxias; neurologic complications of cancers, including paraneoplastic disorders and checkpoint inhibitor/CAR T-cell toxicity; and demyelinating disorders, including sarcoidosis, neuromyelitis optica, myelin oligodendrocyte glycoprotein (MOG)-associated disease, and multiple sclerosis. Dr. Blackburn earned his medical degree at the University of Kentucky College of Medicine. He performed his residency in adult neurology at UT Southwestern, serving his final year as Chief Resident, and stayed to complete a fellowship in neuroimmunology, during which he earned the James T. Lubin Clinician Scientist Award from the Siegel Rare Neuroimmune Association (SRNA). He joined the UT Southwestern faculty in 2020. Benjamin M. Greenberg, M.D., M.H.S. is a Professor and the Cain Denius Scholar in Mobility Disorders in the Department of Neurology at UT Southwestern Medical Center in Dallas, Texas. He currently serves as the Vice Chair of Translational Research and Strategic Initiatives for the Department of Neurology. He is also the interim Director of the Multiple Sclerosis Center and the Director of the Neurosciences Clinical Research Center. In addition, he serves as Director of the Transverse Myelitis and Neuromyelitis Optica Program and the Pediatric Demyelinating Disease Program at Children’s Medical Center. Dr. Greenberg earned his medical degree at Baylor College of Medicine before completing an internal medicine internship at Chicago’s Rush Presbyterian-St. Luke’s Medical Center. He performed his neurology residency at the Johns Hopkins School of Medicine. He also holds an M.H.S. in molecular microbiology and immunology from the Bloomberg School of Public Health, as well as a bachelor’s degree in the history of medicine – both from Johns Hopkins. Prior to his recruitment to UT Southwestern in 2009, Dr. Greenberg was on the faculty of the Johns Hopkins Division of Neuroimmunology, serving as the Director of the Encephalitis Center and Co-Director of the nation’s first dedicated Transverse Myelitis Center. Dr. Greenberg splits his clinical time between adult and pediatric patients at William P. Clements Jr. and Zale Lipshy University Hospitals, Parkland, and Children’s Medical Center. His research focuses on better diagnosing, prognosticating, and treating demyelinating diseases and nervous system infections. He also coordinates clinical trials to evaluate new treatments to prevent neurologic damage and restore function to affected patients. 00:00 Introduction 00:58 Overview of Myelitis and Diagnostic Criteria 02:57 Historical Context and Importance of Updated Criteria 05:10 Challenges with Current Terminology 11:10 Changes in Understanding and Diagnostic Approaches 17:27 Implications for Patients and Clinical Practice 23:40 Impact on Research and Future Directions 28:58 Patient Advocacy 31:17 Conclusion

    36 min
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About

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).

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