SRNA Soundwaves

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 potential side effects, and why successes targeting B cells prompted exploration in autoimmune diseases, including emerging trials for NMOSD and MOGAD [00:04:25]. She described patient selection, the clinical-trial process, expected B-cell reconstitution in about three months, and risks [00:18:55]. Dr. Willekens discussed research questions, including blood-brain barrier interactions, alternative CAR delivery, and future directions comparing approaches, targets, scalability, and cost [00:31:24].Barbara M.P. Willekens, MD, PhD, is a neurologist and Clinical Head of Neurology for multiple sclerosis (MS) and other CNS neuroimmunological diseases at Antwerp University Hospital, Belgium, and an Assistant Professor of Neurology at the University of Antwerp. She is an expert in MS and rare neuroimmunological diseases. She founded the University Neuroimmunology Center Antwerp (UNiCA), a multidisciplinary center bringing together patient care, research and education, which has been recognized as a SRNA Center of Excellence for rare neuroimmune disorders. Her clinical and academic career has focused on translating advances in neuroscience and immunology into better treatments and care for people living with neuroinflammatory diseases.Dr. Willekens leads and contributes to research ranging from early-stage translational science to international clinical trials and real-world studies. Her work includes clinical and translational research into immune tolerance and cellular therapies such as tolerogenic dendritic cells and CAR-T cell therapy, as well as approaches aimed at promoting remyelination and neuroprotection in MS and developing biomarkers for more personalized care. She has been a principal investigator in multiple academic trials and industry-led clinical trials and has helped build international collaborations and registries that generate evidence to improve treatment and patient care. Dr. Willekens plays a leadership role in the wider neuroimmunology community: she is Co-chair of the European Academy of Neurology's Coordinating Panel for Translational Neurology and Neuroscience, has previously served as Co-chair of its Scientific Panel for Neuroimmunology, is a member of the MSBase Scientific Leadership Group, of MOGAD Eugen Devic European Network, and is a driving force behind the International Susac Syndrome Consortium. Her leadership reflects a commitment not only to advancing science, but also to bringing researchers, clinicians and patients together to turn scientific progress into meaningful improvements in everyday care.00:00 Welcome and Guest Intro01:19 CAR-T Explained Simply04:25 From Cancer to Autoimmunity06:35 Why NMOSD and MOGAD10:58 B Cells and Targets15:56 One Time Treatment Question18:55 Who Should Get CAR-T21:46 What Patients Experience26:12 Immune Reset and Side Effects31:24 Dr. Willekens' Lab Research35:01 Next Steps and Open Questions36:24 Future CAR-T Approaches40:12 Closing Thoughts

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 registration, on the event page:https://www.srna.ngo/2026-rndsSRNA founder and president Sandy Siegel recounted how early community isolation and a 1999 gathering helped spark ongoing symposia [00:08:37]. He described the development of a medical advisory board and collaboration with Johns Hopkins that supported research growth, evolving diagnostic definitions, and advances such as plasma exchange and newer therapies for conditions including TM, NMOSD, ON, ADEM, AFM, and MOGAD [00:12:11]. Community support coordinator Leah Campbell shared about her neuromyelitis optica (NMO) diagnosis and described RNDS as invaluable for expert access, treatment decision support, and meaningful connection with others who share similar experiences [00:34:45].Sandy Siegel is the President of SRNA. Sandy got involved with SRNA shortly after his wife, Pauline, contracted TM in 1994 at the age of 35. At the time of her onset, Pauline was a kindergarten teacher. Sandy has been an officer and a board member of SRNA since its inception. Sandy has also served as SRNA’s newsletter and journal editor during his more than two decades of service to the organization. Sandy is a cultural anthropologist with specializations in Native Americans, psychological anthropology, and culture change. Sandy has worked as an adjunct professor at Capital University, Franklin University, the Urban/Rural Program of the College of Great Falls, and the Intertribal Education Center of the Fort Belknap Reservation. Sandy retired from the State of Ohio in 2011 after more than 35 years of service. Sandy returned to college in the fall of 2011 as a photography student at Columbus State Community College. Sandy and Pauline have two sons, four grandsons, and one granddaughter.Leah Campbell is SRNA's Community Support Coordinator. Leah was diagnosed with neuromyelitis optica (NMO) in May 2006 after 17 years of unexplained symptoms and misdiagnosis. She was the first blind student and salutatorian of Altus High School and the first blind graduate of Rhodes College, earning a BA in mathematics. Following graduation and after a treatment for a disease she had been misdiagnosed with, she became quadriplegic and lost sensation of touch, having to relearn how to navigate life as both blind and paralyzed. She is dedicated to using her experiences to support and advocate for others.00:00 Welcome01:03 What the Rare Neuroimmune Disorders Symposium Offers02:35 Meet Sandy and Leah03:13 Origins of RNDS08:37 1999 Breakthrough Symposium12:11 Centers of Excellence Growth22:31 How RNDS Evolved31:30 Why RNDS Still Matters34:45 Leah's Journey with NMOSD35:43 Leah's RNDS Experience38:40 Advice and Closing

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 diagnostic workups such as MRI, antibody testing, and spinal fluid studies, and reviewed acute treatments [03:14]. The discussion also covered emerging therapies like Pivikto for neuroprotection and efgartigimod alfa to lower IgG as a potential alternative to plasma exchange, and examined challenges in remyelination and stem-cell delivery approaches like Q-Cells while cautioning against unproven stem cell clinics [11:57].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 [https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program] at Children’s Medical Center. 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. Michael Levy, MD, PhD is a recognized neurologist with over 15 years of clinical and research expertise in rare neuroimmunological disorders. He established the Neuroimmunology Clinic and Research Laboratory at Massachusetts General Hospital and is the Research Director in the Division of Neuroimmunology and Neuroinfectious Disease. Previously, Dr. Levy was on the faculty at Johns Hopkins University and was the founding Director of their Neuromyelitis Optica Clinic. Clinically, Dr. Levy cares for patients with MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), and idiopathic transverse myelitis (TM). Dr. Levy is also the principal investigator (PI) on numerous patient studies and drug trials for new and improved treatments for these disorders. In 2022, Dr. Levy became the lead principal investigator for the two worldwide clinical trials in MOG antibody disease. In the lab, Dr. Levy’s research focuses on the development of animal models of NMO and MOG with the goal of tolerization as a sustainable long-term treatment. Dr. Levy has more than 200 peer-reviewed research articles, reviews and editorials, and 3 patents covering NMO tolerization therapy, TM diagnostics, and stem cell regeneration approaches.00:00 Welcome01:02 Optic Neuritis Basics02:27 Causes and Percentages03:14 MS vs NMO vs MOG06:07 Workup and Testing07:51 Acute Attack Treatment09:30 Recovery and Vision Measures11:57 Pivikto Neuroprotection15:30 Efgartigimod vs Plasma Exchange17:59 Repair vs Remyelination20:15 Q-Cells and Stem Cell Delivery22:22 Closing

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]. Cindy shared her path from wheelchair tennis to international wheelchair table tennis, and her pursuit of Paralympic qualification through point-based global competition [13:17]. She also discussed writing and self-publishing her book, Parakeet Races and Other Stories, inspired by family memories and her experience with TM [31:58].Cindy Ranii is a 79-year-old retired educator who lives with her wife Shelly and service dog Hollis in Santa Cruz, California. In 2005, her life changed drastically when she was diagnosed with transverse myelitis (TM). Within four days, she went from golfing, playing tennis, and working vigorously as the Superintendent of a local high school district to being a paraplegic (T-3 complete).Six months after her diagnosis she was back at work, using a wheelchair fulltime. Eighteen months later she decided to retire to have enough energy to enjoy her family (four children and 13 grandchildren) and to rebuild an active lifestyle. She competed in wheelchair tennis and then pursued table tennis with her eyes on the Paralympics. Currently she is training to compete in the 2028 LA Paralympics in wheelchair table tennis, saying, “My quest is to be the oldest Paralympian in history. It’s a long shot; but why not!”Cindy has written numerous articles regarding living with a disability for New Mobility Magazine and authored a memoir, Parakeet Races and Other Stories, which is available through Amazon: https://rebrand.ly/cindy-ranii 00:00 Welcome00:53 Cindy's Diagnosis Overview01:37 Early Symptoms and ER Rush06:07 Hospital Transfer and TM Diagnosis08:51 Rehab Reality and New Life11:27 Accessibility Costs and Support13:17 Paralympic Table Tennis Quest17:52 Disability Community and Pride20:25 Finding Resilience Through Sport22:34 Mentors and New Athletic Path28:27 Work Return Then Retirement31:58 Writing Her Memoir37:09 Closing Reflections

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 Introductions00:01:24 What Is Transverse Myelitis00:03:30 Common Causes and Mechanisms00:06:16 Diagnosis Versus Presentation00:10:39 Monophasic or Recurrent00:13:20 Diet Do’s and Don’ts00:17:25 Aging and Long-Term Health00:24:53 Peptides and Stem Cells00:33:07 Fatigue Sleep and CBD or THC-containing gummies00:37:58 Chronic Pain Options00:43:55 Physical Therapy Recovery00:47:56 Spinal Cord Stimulation ArcX00:51:46 Stopping Pregabalin Safely00:52:59 Trials and Rehab at Any Age00:56:00 MOG Titer and Diagnosis01:00:02 Closing