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 302. Drs. Grace Gombolay and Varun Kannan

    1 DAY AGO

    Community Meets Clinic 302. Drs. Grace Gombolay and Varun Kannan

    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 met Dr. Grace Gombolay and Dr. Varun Kannan, both from Emory University and Children's Healthcare of Atlanta, designated Centers of Excellence in Rare Neuroimmune Disorders. Dr. Kannan discussed learning alongside families as conditions like MOG antibody disease emerged clinically and his focus on tailoring treatment and supporting clinical trials in a field with few approved therapies [03:37]. Dr. Gombolay outlined her research on biomarker development, a Children’s biobank, advanced MRI collaborations, and participation in the Network of Pediatric MS Centers covering disorders such as MOGAD, NMOSD, optic neuritis, ADEM, and TM [06:36]. They described their multidisciplinary clinic team, highlighted home infusions and telemedicine to reduce burden, and shared personal self-care strategies [10:22]. Dr. Gombolay and Dr. Kannan expressed hope for more trials, remyelination, prevention, and earlier diagnosis aided by AI prompts [20:43]. You can view Dr. Grace Gombolay's medical profile here: https://www.choa.org/doctors/grace-gombolay You can view Dr. Varun Kannan's medical profile here: https://www.choa.org/doctors/varun-kannan Grace Gombolay, MD, MSc, FAAN is an Associate Professor at Emory University and Director of the Pediatric Neuroimmunology and Multiple Sclerosis Clinic at Children's Healthcare of Atlanta. Her research interest involves biomarker development in pediatric neuroinflammatory diseases including autoimmune encephalitis, multiple sclerosis, MOGAD, and NMOSD. Varun Kannan, MD graduated from Emory University School of Medicine in 2017. He then completed child neurology residency in 2022, followed by pediatric neuroimmunology and multiple sclerosis fellowship at Baylor College of Medicine and Texas Children's Hospital in 2023. He returned to Emory and Children's Healthcare of Atlanta in 2023, where he has worked closely with Dr. Grace Gombolay in the neuroimmunology program. He is interested in clinical research regarding severe/relapsing forms of rare neuroimmune disorders including autoimmune encephalitis and MOGAD. He is currently involved in multiple upcoming phase 3 clinical trials exploring new disease modifying treatments for pediatric rare neuroimmune disorders. He is also passionate about medical education and is currently one of the Associate Program Directors for the Emory child neurology residency. 00:00 Welcome 01:56 Dr. Grace Gombolay's Journey 03:37 Dr. Varun Kannan's Path 05:06 Kannan's Research Focus 06:36 Biomarkers and Biobank 10:22 Clinic Team and Care 13:44 Self Care and Balance 16:15 Children's Healthcare of Atlanta 20:43 Hopeful Future Ahead 24:49 Closing

    27 min
  2. Ask the Expert 1404. MOGcast | The State of MOGAD Science

    15 APR

    Ask the Expert 1404. MOGcast | The State of MOGAD Science

    In this special “Ask the Expert” collaboration between The MOG Project and SRNA, Julia Lefelar and Dr. GG deFiebre welcomed Dr. Benjamin Greenberg of UT Southwestern, who answered questions from the audience. Dr. Greenberg reviewed major advances in MOG antibody disease research and diagnostic criteria [00:05:06]. He discussed efforts to predict relapse risk using sustained antibody positivity, demographic and clinical models, and immune-cell profiling studies [00:07:55]. Dr. Greenberg detailed controversies around low-positive antibody titers and how cell-based assays and dilution thresholds affect specificity [00:21:38]. He outlined concepts and progress in tolerance-inducing approaches such as Tregs and CAR T therapy, described differences from B-cell–depleting drugs like rituximab [00:26:32] Finally, Dr. Greenberg highlighted the satralizumab meteoroid trial and the ongoing cosMOG study of rozanolixizumab, emphasizing community engagement, registries, surveys, and trial participation to accelerate access and potential curative strategies [00:38:36]. You can learn more about The MOG Project here: https://mogproject.org/ Benjamin M. Greenberg, MD, MHS is a Professor and the Cain Denius Scholar in Mobility Disorders in the Department of Neurology [ https://utswmed.org/why-utsw/departments/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 [ https://utswmed.org/locations/aston/multiple-sclerosis-and-neuroimmunology-clinic/ ] 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 [ https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program ]. 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 Welcome 01:44 Hosts and Guest Intro 05:06 Research Buckets Overview 07:55 Predicting Relapse Risk 11:46 Tregs and Immune Brakes 17:40 Attack Severity and Relapse 19:24 MOGAD Criteria Updates 21:38 Titers Explained Simply 26:32 Targeting MOG Antibodies 29:11 CAR T and Immune Reset 32:39 When Criteria Changes 33:52 Tolerance Research Boom 34:48 From Animals to Trials 37:17 Community Drives Progress 38:36 Meteoroid and cosMOG Clinical Trials 41:39 How These Drugs Work 44:02 FDA Approval and Access 45:49 Insurance Switch Concerns 48:39 Rituximab Dosing Debate 52:41 Why Antibodies Develop 54:18 Future Attack Patterns 55:47 CAR T Versus Rituximab 57:10 Lab Research and Support 01:00:51 Hope for a Cure 01:02:14 Closing and Resources

    1hr 6min
  3. Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD)

    13 APR

    Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD)

    In this SRNA "Ask the Expert" episode moderated by Krissy Dilger, Dr. John Chen of the Mayo Clinic answered audience questions about MOG antibody disease (MOGAD). He discussed diagnosis and the importance of titers and live cell-based assays given possible false positives [00:02:42]. Dr. Chen reviewed acute management with early high-dose steroids, prolonged tapers, and escalation to plasma exchange for severe or steroid-refractory attacks, as well as evolving long-term options including IVIG/subcutaneous IG and IL-6 blockade [00:04:14]. Audience questions covered relapse prediction, vision recovery timelines, fatigue, pregnancy, heredity, symptom interpretation, and whether to stop immunotherapy when antibodies become undetectable [00:12:13]. Finally, Dr. Chen described current and upcoming research, including a trial that is currently enrolling participants, and future prospects for optic nerve regeneration while cautioning against unproven stem cell clinics [00:41:37]. John J. Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees and completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa. He then took a position at the Mayo Clinic in 2014 where he specializes in Neuro-Ophthalmology. Currently, he serves as a Consultant and Professor of Ophthalmology and Neurology, and Neuro-Ophthalmology Fellowship Director at the Mayo Clinic. Among Dr. Chen’s awards and honors are the AAO Senior Achievement Award, Top Doctors in Minnesota, the Heed Fellowship, Real World Ophthalmology Inspiring Academic Leader Award, Ophthalmology Teacher of the Year Award four times leading to induction to the Educators Hall of Fame, and the Mayo Clinic Distinguished Educator Award – awarded to the top educator at Mayo Clinic in Rochester. He is an Associate Editor for Ophthalmology and the Journal of Neuro-Ophthalmology, has authored more than 250 peer-reviewed publications, and focuses his research on ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, particularly NMOSD and MOG antibody–associated disease. 00:00 Welcome and Introductions 01:08 What Is MOGAD? 02:42 Causes and Triggers 03:23 How MOGAD Is Diagnosed 04:14 Acute Attack Treatments 06:35 Steroid Side Effects 08:13 Testing During Treatment 09:09 Long Term Therapies 12:13 Interpreting MOG Positivity 16:51 Eye Symptoms and Vision Fluctuations 20:12 Antibody Titers and Severity 21:19 Relapse Risk After First Attack 23:09 Seizures and Encephalitis 24:17 Vision Recovery After Optic Neuritis 25:13 Acute Treatment Window 25:57 Hereditary Risk Questions 26:35 Stopping Azathioprine Safely 29:56 Managing Post Attack Pain 30:16 Steroids IVIG and Plasma Exchange 32:08 Infections as Triggers 33:01 Retesting MOG Antibodies 35:01 Fatigue and Workup 36:23 Prognosis and Life Expectancy 37:45 Tinnitus and Brain Pressure 39:05 Pediatric and Pregnancy Concerns 41:37 Trials and Future Regeneration 46:05 Research Resources and Wrap Up

    50 min
  4. Community Meets Clinic 301. Dr. Elizabeth Wilson

    6 APR

    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
  5. 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
  6. 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 hr
  7. ABCs of MOGAD 301. Significance of Brain Lesions in Pediatric MOGAD

    19 JAN

    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
  8. 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
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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).

Information

  • Creator
    Siegel Rare Neuroimmune Association (SRNA)
  • Years Active
    2014 - 2026
  • Episodes
    216
  • Rating
    Clean
  • Copyright
    © 062634
  • Show Website
    SRNA Soundwaves

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