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SRNA Soundwaves

SRNA Soundwaves

Written by: 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 Hygiene & Healthy Living Physical Illness & Disease
Episodes
  • Ask the Expert 1408. Open Q&A on Transverse Myelitis (TM)
    Jun 10 2026

    Krissy Dilger of SRNA welcomed University of Washington neuroimmunologist Dr. Shuvro Roy for an open Q&A on transverse myelitis (TM). Dr. Roy explained how TM can be both a presentation and a diagnosis, with “idiopathic TM” used when extensive testing finds no underlying cause and noted that recurrence should prompt reevaluation for conditions like NMOSD, MOGAD, or neurosarcoidosis and consideration of preventive immunotherapy [00:06:16]. He addressed audience questions about lifestyle and rehabilitation topics including diet, metabolic health, exercise, sleep issues, and safe considerations around CBD or THC-containing gummies, and reviewed approaches to chronic pain, spasticity, physical therapy timelines, and spinal cord stimulation (including ArcX) [00:13:20]. Dr. Roy also discussed the current status of peptides and stem cells, highlighted emerging cell-based therapies like CAR-T, and answered a case question about a high MOG antibody titer and its diagnostic implications [00:24:53].


    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.


    00:00:00 Welcome and Introductions

    00:01:24 What Is Transverse Myelitis

    00:03:30 Common Causes and Mechanisms

    00:06:16 Diagnosis Versus Presentation

    00:10:39 Monophasic or Recurrent

    00:13:20 Diet Do’s and Don’ts

    00:17:25 Aging and Long-Term Health

    00:24:53 Peptides and Stem Cells

    00:33:07 Fatigue Sleep and CBD or THC-containing gummies

    00:37:58 Chronic Pain Options

    00:43:55 Physical Therapy Recovery

    00:47:56 Spinal Cord Stimulation ArcX

    00:51:46 Stopping Pregabalin Safely

    00:52:59 Trials and Rehab at Any Age

    00:56:00 MOG Titer and Diagnosis

    01:00:02 Closing


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    1 hr and 2 mins
  • Community Meets Clinic 303. Dr. Benjamin Greenberg
    May 25 2026

    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. Benjamin Greenberg of the UT Southwestern Medical Center. He outlined his translational research, including the Q Study, a Phase 1 trial assessing the safety and feasibility of transplanting human glial restricted progenitor cells into the spinal cord of people who have been diagnosed with transverse myelitis (TM) [05:49]. He also described research on immune-remodeling therapies for NMO aimed at reducing long-term immunosuppression. Dr. Greenberg illustrated multidisciplinary care at UT Southwestern and Children’s Medical Center, emphasized options for second opinions and clinician-to-clinician remote consultation, and shared hopes for nervous system repair trials and curative immune therapies [07:18]. You can view Dr. Benjamin Greenberg's medical profile here:

    https://utswmed.org/doctors/benjamin-greenberg/


    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 and Guest Intro

    01:41 Path to Neurology

    03:50 Why Neuroimmunology

    05:49 Research Focus and Trials

    07:18 Clinic Team and Referrals

    10:31 Self Care and Hobbies

    12:17 How the Clinic Can Help

    14:16 Hope for Future Therapies

    15:56 Wrap Up

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    19 mins
  • Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)
    May 20 2026

    Krissy Dilger of SRNA moderated an open Q&A on acute disseminated encephalomyelitis (ADEM) with pediatric neurologist Dr. Linda Nguyen of the University of Texas Southwestern Medical Center. Dr. Nguyen discussed how widespread MOG antibody testing has shifted many cases previously labeled ADEM to MOG antibody-associated disease, recommended MOG testing at onset, and reviewed relapse risk, mimics, and follow-up imaging [00:05:07]. Questions from the community covered acute treatments, recovery, guidance on pseudo-relapse, rehabilitation, and transition from pediatric to adult care [00:14:41].


    Dr. Linda Nguyen completed her MD, PhD training at West Virginia University in 2017, and then pediatric neurology residency at the University of California, San Diego in 2022. She then completed a combined pediatric and adult neuroimmunology fellowship at the University of Texas Southwestern in 2024, where she now serves as an Assistant Professor in the Department of Pediatrics. Dr. Nguyen currently sees patients in the Demyelinating Disease Clinic at Children’s Medical Center Dallas.


    00:00 Welcome and Guest Intro

    01:08 What Is ADEM

    01:51 Causes and Who Receives This Diagnosis

    02:55 Early Signs and Onset

    04:20 Diagnosis and MRI Criteria

    05:07 MOG Antibodies and ADEM

    07:21 Testing and Relapse Risk

    09:06 Recurrent ADEM and Labels

    12:34 Mimics and Differential Diagnosis

    14:41 Acute Treatment Options

    15:38 Recovery Timeline and Rehab

    17:47 Long Term Effects and Seizures

    21:23 Family Support and Accommodations

    24:47 Follow Up Imaging and Relapse Signs

    27:25 Managing Fatigue and Headaches

    29:31 Supplements, Vaccines, and Genetics

    33:40 Pseudo Relapse and Exercise Balance

    37:41 Research and Predicting Outcomes

    43:14 Transition to Adult Care

    45:36 Weakness Sleep Issues and Final Thoughts

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    52 mins
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