SRNA Soundwaves

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. Community Meets Clinic 301. Dr. Elizabeth Wilson

    HACE 4 DÍAS

    Community Meets Clinic 301. Dr. Elizabeth Wilson

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode hosted by Krissy Dilger of SRNA, we meet Dr. Elizabeth Wilson, a pediatric neurologist at Cincinnati Children’s Hospital and Director of its Multiple Sclerosis and Neuroimmunology Center. Dr. Wilson described her interest in individualized, longitudinal neuroimmunology care and the rapid evolution of treatments [01:47]. She highlighted her research on social determinants of health, including environmental stressors, caregiver impacts, and the roles of race and ethnicity in pediatric neuroinflammatory outcomes [05:21]. Dr. Wilson outlined how patients can self-refer or be referred, and described the center’s multidisciplinary model involving neuroimmunology, rheumatology, neuro-ophthalmology, neuropsychology, mental health, school support, social work, rehabilitation, and research resources [07:49]. She shared self-care strategies and expressed hope for faster diagnosis, earlier treatment, and biomarkers to better track disease activity and prevent attacks [13:31]. Elizabeth Wilson, MD is a pediatric neurologist at Cincinnati Children’s hospital with specialized training in neurology and neuroimmunology. She received a Bachelor of Science in Neurosicence from Lafayette College in Pennsylvania. She then completed medical school at Boston University, Pediatric residency at Boston Children’s Hospital/Boston Medical Center, and Pediatric neurology residency at Boston Medical Center. She went on to pursue a fellowship in Neuroimmunology at Massachusetts General Hospital/Boston Children’s Hospital. She recently became the director of the Multiple Sclerosis and Neuroimmunology Center (MS-NIC) at Cincinnati Children’s Hospital. Through her research she aims to understand how a patient’s environment, including life stressors, interacts with their body and genetics in inflammatory neurologic conditions, such as multiple sclerosis. She believes that by studying this relationship we can better manage these disorders and advocate for changes that will improve patient outcomes. You can view her medical profile here: https://www.cincinnatichildrens.org/bio/w/elizabeth-wilson 00:00 Introduction 01:47 Why Pediatric Neurology 03:27 Choosing Neuroimmunology 05:21 Research And Health Equity 07:49 Inside Cincinnati Children’s Hospital and the Multiple Sclerosis and Neuroimmunology Center 11:07 Multidisciplinary Team Support 13:31 Clinician Self Care 15:14 Considering The Clinic 17:29 Hope For The Future 18:50 Closing

    21 min
  2. Ask the Expert 1402. Paraneoplastic Diseases and Rare Neuroimmune Disorders

    31 MAR

    Ask the Expert 1402. Paraneoplastic Diseases and Rare Neuroimmune Disorders

    In this SRNA “Ask the Expert” episode, Krissy Dilger of SRNA spoke with neuroimmunologist Dr. Shailee Shah about paraneoplastic neurologic syndromes—immune-mediated, “off-target” effects of cancer that can affect the brain, spinal cord, or peripheral nerves. Dr. Shah described updated diagnostic criteria and scoring that combine neurologic phenotypes, cancer risk, and high-risk autoantibodies, and she explained how immune checkpoint inhibitors can trigger immune-related neurologic adverse events that don’t always fit classic rules [00:01:48]. She reviewed how these syndromes differ from other autoimmune neurologic disorders and outlined common subacute presentations such as limbic encephalitis, brainstem encephalitis, cerebellar ataxia, seizures, and neuropathies [00:08:09]. Dr. Shah emphasized prompt evaluation with neurologic exam, MRI/EEG/EMG as appropriate, blood and CSF antibody testing, cancer screening, and coordinated oncologic and immunosuppressive treatment to prevent worsening disability [00:17:24]. Shailee Shah, MD is a Clinical Assistant Professor in the Neuroimmunology Division with Northwestern Medicine and Northwestern University. She is an autoimmune neurologist with expertise in the management of paraneoplastic and autoimmune neurological diseases. She also treats rare neuroimmunological diseases such as neuromyelitis optica and MOG associated disease. She is co-director of the Northwestern Medicine Paraneoplastic Neurological Disease Clinic. 00:00 Welcome and Guest Intro 00:58 What Is Paraneoplastic 01:48 New Criteria and Antibodies 04:59 Diagnostic Challenges and ICI 08:09 Paraneoplastic vs Autoimmune 10:22 How Common Are They 13:03 Early Symptoms to Watch 17:24 When to Seek Care 19:09 Testing and Workup 24:20 Paraneoplastic Myelitis 27:55 Delays and Specialty Centers 31:38 Cancer Link and Treatment 37:16 Changing Therapies 38:19 Recovery and Prognosis 39:58 Patient Advice and Hope 42:52 Closing

    45 min
  3. Ask the Expert 1401. Open Q&A on Neuromyelitis Optica Spectrum Disorder (NMOSD)

    19 MAR

    Ask the Expert 1401. Open Q&A on Neuromyelitis Optica Spectrum Disorder (NMOSD)

    In SRNA’s Ask the Expert episode moderated by Krissy Dilger, Dr. Elena Grebenciucova described neuromyelitis optica spectrum disorder (NMOSD) symptoms including optic neuritis, transverse myelitis, brainstem syndromes, and intractable hiccups [00:01:05]. She outlined diagnostic evaluation using MRI and correct blood-based antibody testing (preferably cell-based assays), common diagnostic pitfalls, and the need to rule out infections before immunosuppressive treatment [07:08]. Dr. Grebenciucova reviewed urgent relapse management with IV steroids and early plasma exchange, side effects, long-term preventive therapies (FDA-approved and off-label) [14:02]. Finally, she answered community questions on supplements, chronic optic neuritis, rehab appeals, pain/spasticity, pregnancy planning, long-term treatment duration, mental health, seronegative syndromes, follow-up frequency, and recovery expectations [25:22]. Elena Grebenciucova, MD completed neurology residency at the University of Chicago in Chicago, Illinois. Dr. Grebenciucova has been interested in autoimmune disorders of the central nervous system, including rare neuroimmune disorders, since medical school. After residency, she completed a neuroimmunology Fellowship under the mentorship of Dr. Brenda Banwell and Joseph Berger at the Perelman School of Medicine of The University of Pennsylvania. Currently she is an assistant professor of Neurology (MS/Neuroimmunology) and neurological infections at Northwestern University in Chicago, Illinois, and she runs the Transverse Myelitis Center there. Dr Grebenciucova sees patients with rare autoimmune conditions including NMOSD, MOGAD, transverse myelitis, and autoimmune encephalitis. 00:00 Welcome and Introduction 01:05 What Is NMOSD? 01:59 Symptoms and Relapse Signs 03:27 What Causes NMOSD? 07:08 How NMOSD Is Diagnosed 10:09 Key Tests and Pitfalls 14:02 Acute Attack Treatment 17:18 Steroid Side Effects 22:19 Long-Term Therapies Worldwide 25:22 Community Questions, Beginning with Vitamins 27:40 Optic Neuritis Breakthroughs 28:47 Chronic Optic Nerve Inflammation 29:19 Winning Insurance Appeals 31:23 Waist Band Pain and Spasticity 34:04 Pregnancy and Family Planning 37:40 Stopping Long-Term Treatment 39:40 Long-Term Side Effects 43:04 Mood and Personality Changes 49:47 Trials for Seronegative NMOSD 52:55 Follow Up Visit Schedule 55:34 Relapse Recovery Timeline 58:02 Closing

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

    19 ENE

    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
  5. ABCs of MOGAD 0201. Steroid Dependence

    15/12/2025

    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

  6. 05/12/2025 ·  CONTENIDO EXTRA

    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
  7. Community Meets Clinic 205. Dr. Alexandra Kornbluh

    01/12/2025

    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
  8. ABCs of NMOSD 602. NMOSD and Romantic Relationships

    13/10/2025

    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
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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).

Información

  • Creador
    Siegel Rare Neuroimmune Association (SRNA)
  • Años de actividad
    2023 - 2026
  • Episodios
    213
  • Clasificación
    Apto
  • Copyright
    © 062634
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    SRNA Soundwaves