Siegel Rare Neuroimmune Association (SRNA)
SRNA Soundwaves
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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Author
Siegel Rare Neuroimmune Association (SRNA)
Category
Podcast website
Latest episode
Sep 21, 2026
Where to listen?
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Episodes
Ask the Expert 1412. What is CAR-T therapy? 21.09.2026 43:42
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 [00:01:19]. Dr. Willekens reviewed CAR-T’s development since the 1980s for blood cancers, its severe pote...
Community Meets Clinic 306. Drs. Brenda Banwell and Haiwen Chen 08.09.2026 36:00
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 Rare Neuroimmune Disorders. They shared about their paths into pediatric neurology and focus on...
Ask the Expert 1411. All About the Rare Neuroimmune Disorders Symposium 03.09.2026 42:11
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, rehabilitation, mental health, and research. You can view details about RNDS, including the agenda and regis...
Community Meets Clinic 305. Dr. Elena Grebenciucova 03.08.2026 27:02
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 University in Chicago, Illinois, leading its Transverse Myelitis Center, a designated Center of Exce...
Ask the Expert 1410. Understanding Optic Neuritis | Causes, Treatments, and Repair 27.07.2026 24:26
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 (including age patterns, bilateral involvement, severity, exam findings, and typical recovery), outlined d...
Ask the Expert 1409. Community Spotlight | Cindy Ranii 20.07.2026 41:08
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 before retiring, emphasizing the importance of support, love, and community [08:51]. Cin...
Community Meets Clinic 304. Dr. Ayşe Altıntaş 13.07.2026 27:05
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 been designated as a Center of Excellence in Rare Neuroimmune Disorders. Dr. Altıntaş described...
ABCs of NMOSD 702. CAR-T in NMOSD 06.07.2026 30:57
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 physicians outlined an autologous Phase 1 study at Mass General and UT Southwestern [07:02]. They discus...
Ask the Expert 1408. Open Q&A on Transverse Myelitis (TM) 10.06.2026 1:02:13
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 conside...
Community Meets Clinic 303. Dr. Benjamin Greenberg 25.05.2026 18:52
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 huma...
Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM) 20.05.2026 51:40
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, mimi...
Ask the Expert | Research Edition 1406. Q Study Updates | Expanded Inclusion Criteria & What’s Next 18.05.2026 31:47
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 (TM). Dr. Greenberg cautioned the audience against stem cell tourism [00:03:03]. He described the decades-...
Pregúntele al Experto 1405. Rehabilitación y Recuperación en Trastornos Neuroinmunes Poco Frecuentes 11.05.2026 53:30
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 iniciarse lo antes posible —incluso antes de contar con un diagnóstico definitivo— para prevenir complica...
ABCs of NMOSD 701. University of Rochester NMO-Health Index Study 04.05.2026 18:42
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 survey for use in clinical trials and routine care [02:25]. They explained that existing measures are oft...
Community Meets Clinic 302. Drs. Grace Gombolay and Varun Kannan 27.04.2026 27:03
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 lear...
Ask the Expert 1404. MOGcast | The State of MOGAD Science 15.04.2026 1:06:18
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, de...
Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD) 13.04.2026 50:19
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 pla...
Community Meets Clinic 301. Dr. Elizabeth Wilson 06.04.2026 20:56
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...
Ask the Expert 1402. Paraneoplastic Diseases and Rare Neuroimmune Disorders 31.03.2026 44:49
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...
Ask the Expert 1401. Open Q&A on Neuromyelitis Optica Spectrum Disorder (NMOSD) 19.03.2026 1:00:02
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,...
ABCs of MOGAD 301. Significance of Brain Lesions in Pediatric MOGAD 19.01.2026 17:01
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 br...
ABCs of MOGAD 0201. Steroid Dependence 15.12.2025 21:13
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 [00:0...
Jan. 5, 2026, the "Ask the Expert" podcast channel will be renamed “SRNA Soundwaves” 05.12.2025 1:16
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 strea...
Community Meets Clinic 205. Dr. Alexandra Kornbluh 01.12.2025 12:40
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 neuroimmun...
ABCs of NMOSD 602. NMOSD and Romantic Relationships 13.10.2025 58:49
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...
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