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SRNA Soundwaves

by Siegel Rare Neuroimmune Association (SRNA)

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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Episodes

  1. Ask the Expert 1412. What is CAR-T therapy?

    In this episode of “Ask the Expert," Krissy Dilger of SRNA spoke with Dr. Barbara Willekens of the University of Antwerp about CAR-T cell therapy, explaining it as genetically engineered T cells (autologous or allogeneic) designed to recognize targets like CD19 on B cells and destroy them...

  2. Community Meets Clinic 306. Drs. Brenda Banwell and Haiwen Chen

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA spoke with Drs. Brenda Banwell and Haiwen Chen of Johns Hopkins Children’s Center, a designated Center of Excellence in…

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  3. Ask the Expert 1411. All About the Rare Neuroimmune Disorders Symposium

    In this SRNA “Ask the Expert” episode, Krissy Dilger of SRNA introduced the Rare Neuroimmune Disorder Symposium (RNDS), a three-day hybrid event in Dallas, Texas (October 15–17, 2026) that connects individuals and families with leading experts for education on diagnosis, symptom management,...

  4. Community Meets Clinic 305. Dr. Elena Grebenciucova

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA spoke with Dr. Elena Grebenciucova, an assistant professor of neurology and neurological infections at Northwestern...

  5. Ask the Expert 1410. Understanding Optic Neuritis | Causes, Treatments, and Repair

    In this SRNA “Ask the Expert” episode, GG deFiebre spoke with Dr. Michael Levy and Dr. Benjamin Greenberg about optic neuritis and how it is most often linked to multiple sclerosis but can also be idiopathic or associated with MOGAD and NMOSD. They compared differences across these conditions...

  6. Ask the Expert 1409. Community Spotlight | Cindy Ranii

    In this "Community Spotlight Edition" of "Ask the Expert," Landy Thomas of SRNA spoke with Cindy Ranii about living with transverse myelitis (TM). Cindy described her diagnostic journey, rehabilitation, accessibility, and financial challenges [00:53]. She discussed returning to work briefly…

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  7. Community Meets Clinic 304. Dr. Ayşe Altıntaş

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA spoke with Dr. Ayşe Altıntaş, Professor of Neurology at Koç University School of Medicine in Istanbul, Turkey, which has…

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  8. ABCs of NMOSD 702. CAR-T in NMOSD

    Dr. GG deFiebre of SRNA spoke with Dr. Michael Levy and Dr. Benjamin Greenberg about CAR-T therapy for aquaporin-4-positive NMOSD. They described why targeting B cells may reduce aquaporin-4 antibodies over time and could enable long-term remission or reduced need for ongoing drugs [01:37]. The...

  9. Ask the Expert 1408. Open Q&A on Transverse Myelitis (TM)

    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...

  10. Community Meets Clinic 303. Dr. Benjamin Greenberg

    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,...

  11. Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)

    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...

  12. Ask the Expert | Research Edition 1406. Q Study Updates | Expanded Inclusion Criteria & What’s Next

    Krissy Dilger of SRNA hosted Dr. Benjamin Greenberg of UT Southwestern to share updates on 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…

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  13. Pregúntele al Experto 1405. Rehabilitación y Recuperación en Trastornos Neuroinmunes Poco Frecuentes

    En este episodio de «Pregúntale al Experto» de SRNA, moderado por Jesús Loreto, la Dra. Glendaliz Bosques explica por qué la rehabilitación es un componente fundamental en la recuperación de las personas con trastornos neuroinmunes poco frecuentes. Destaca que el proceso de rehabilitación debe...

  14. ABCs of NMOSD 701. University of Rochester NMO-Health Index Study

    Krissy Dilger of SRNA spoke with Matt Rathbun and Charlotte Engebrecht from the University of Rochester Center for Health and Technology about the Neuromyelitis Optica Spectrum Disorder-Health Index (NMOSD-HI) study, which aims to develop and validate an NMOSD-specific patient-reported outcome...

  15. 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,...

  16. 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...

  17. 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...

  18. 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 neurologist at Cincinnati Children’s Hospital and Director of its Multiple...

  19. 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...

  20. 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…

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  21. 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…

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  22. 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…

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  23. 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…

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  24. 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...

  25. 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...

  26. 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…

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  27. 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....

  28. 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...

  29. Ask the Expert 1310. Prevention and Treatment of Skin Breakdown

    Krissy Dilger of the Siegel Rare Neuroimmune Association (SRNA) was joined by experts Janet Dean, MS, RN, CRRN, CRNP and Florence Hanssen, RN to discuss skin health and the prevention of skin breakdown. The conversation covered the structure of the skin and how paralysis affects skin health...

  30. Ask the Expert 1309. Parenting is Hard | Part 5

    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 In part five of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was…

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  31. Ask the Expert 1308. Parenting is Hard | Part 4

    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 In the fourth part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA...

  32. Ask the Expert 1307. Parenting is Hard | Part 3

    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 In the third part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was...

  33. Ask the Expert 1306. Community Spotlight | Roopa Ramamoorthi, PhD and Marie Abrego

    In this "Community Spotlight Edition" of "Ask the Expert," Landy Thomas of SRNA talked with Marie Abrego and Dr. Roopa Ramamoorthi about visual impairment and their collaborative book of poetry, Rare Visions, published through the Ipsen Foundation. Dr. Ramamoorthi shared her inspiration for the...

  34. Ask the Expert 1305. FES 101

    In this episode of "Ask the Expert," Dr. Matthew Bellman joined Dr. GG deFiebre of SRNA to explain the basics of functional electrical stimulation (FES) and its applications. Dr. Bellman outlined how FES differs from other electrical stimulation techniques and its role in improving mobility for...

  35. Ask the Expert 1304. Parenting is Hard | Part 2

    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 In the second part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock shared…

    more

  36. Ask the Expert 1303. Parenting is Hard | Part 1

    At the end of this mini-series, we will host a Q&A episode where Barbara Babcock will answer questions from the community. To submit your question, please visit: https://srna.ngo/submit In the first part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock...

  37. Community Meets Clinic 203. Dr. Monica Diaz

    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. Monica Diaz of University of North Carolina Health. Dr. Diaz shared her journey into neurology and...

  38. Ask the Expert 1302. Pelvic Floor Therapy for Bladder and Bowel Management

    Krissy Dilger of SRNA moderated this "Ask the Expert" episode, “Pelvic Floor Therapy for Bladder and Bowel Management,” featuring Jessica Ekberg, a certified pelvic floor therapist. Jessica explained the various conditions treated by pelvic floor therapy, emphasizing the importance of posture and...

  39. Community Meets Clinic 202. Dr. Michael Levy

    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. Michael Levy, a clinician from Massachusetts General Hospital. Dr. Levy is the Research Director of…

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  40. Community Meets Clinic 201. Dr. Cristina Sadowsky

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Cristina Sadowsky from Kennedy Krieger Institute in Baltimore, Maryland. Dr. Sadowski shared her journey…

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  41. Ask the Expert 1301. Vaccines and Immunosuppression

    In this episode of "Ask the Expert," Dr. Eoin Flanagan joined Dr. GG deFiebre of SRNA. Dr. Flanagan explained how immunosuppressive medications impact the immune system and the efficacy of vaccines [00:02:45]. He discussed the primary concerns and risks of vaccinating individuals on these...

  42. ABCs of NMOSD 601. Body Dysmorphia

    In the "ABCs of NMOSD" episode, Landy Thomas of SRNA was joined by Heather Dawn Sowalla and Dr. Meghan Beier to discuss post-diagnosis body dysmorphia in NMOSD patients [00:00:12]. Heather shared her misdiagnosis journey, the impact of steroids, and her coping mechanisms [00:06:24]. Dr. Beier...

  43. Ask the Expert 1216. Transcutaneous Spinal Stimulation

    In this "Ask the Expert" episode, Dr. GG deFiebre of SRNA was joined by Dr. Rebecca Martin, who detailed the mechanism and benefits of transcutaneous spinal cord stimulation (TSS). Dr. Martin explained how TSS, a non-invasive method, aims to amplify spinal cord excitability and improve…

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  44. Ask the Expert 1215. Women's Health within Neuroimmunology

    In this "Ask the Expert" episode titled, "Women's Health within Neuroimmunology," Dr. Sonia Singh joined Krissy Dilger of SRNA to share women's health concerns within the context of neuroimmunology, focusing on issues like fertility and pregnancy for those with rare neuroimmune disorders...

  45. Ask the Expert 1214. Self Identity and Finding Meaning Following Diagnosis

    In this "Ask the Expert" episode titled, "Self Identity and Finding Meaning Following Diagnosis," Krissy Dilger of SRNA spoke with Susan Y. Wegener, LCSW, a licensed clinical social worker, about coping with a chronic diagnosis and its emotional adjustments, referencing Kübler-Ross’ stages of…

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  46. Community Meets Clinic 103. Dr. Jennifer Graves

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Jennifer Graves from UC San Diego Health. Dr. Graves shared her journey into neurology and…

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  47. ABCs of NMOSD 504. Managing the Dread of Relapse

    In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04].…

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  48. ABCs of NMOSD 503. Social Reintegration Following an NMOSD Diagnosis

    In the “ABCs of NMOSD” episode titled, “Social Reintegration Following an NMOSD Diagnosis,” Landy Thomas of SRNA and Kim Jackson-Matthews discussed social reintegration following an NMOSD diagnosis [00:00:14]. Kim shared her diagnosis story, including the onset of symptoms and the challenges she...

  49. ABCs of MOGAD 102. Meteoroid and cosMOG Clinical Trials for MOGAD Treatments

    In the “ABCs of MOGAD” episode titled, “Meteoroid and cosMOG Clinical Trials for MOGAD Treatments,” Krissy Dilger of SRNA was joined by Dr. Michael Levy. They described MOG antibody disease and its similarities to NMO and MS, explaining current therapeutic options [00:01:56]. Dr. Levy talked…

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  50. ABCs of MOGAD 101. I Have MOGAD. Now What?

    In “I have MOGAD. Now what?,” the first episode of the “ABCs of MOGAD” series, Krissy Dilger of SRNA was joined by Dr. Michael Levy. Dr. Levy explained the MOG antibody disease diagnosis, including its autoimmune nature and symptoms [00:01:12]. The discussion covered the history and evolution of...

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ABOUT THIS SHOW

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).

HOSTED BY

Siegel Rare Neuroimmune Association (SRNA)

CATEGORIES

health fitness medicine

Frequently Asked Questions

How many episodes does SRNA Soundwaves have?

SRNA Soundwaves currently has 230 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.

What is SRNA Soundwaves 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...

How often does SRNA Soundwaves release new episodes?

SRNA Soundwaves publishes regularly with 230 episodes available. Check the episode list for the typical release schedule.

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You can listen to SRNA Soundwaves on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.

Who hosts SRNA Soundwaves?

SRNA Soundwaves is created and hosted by Siegel Rare Neuroimmune Association (SRNA).
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