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 Intro

01:19 CAR-T Explained Simply

04:25 From Cancer to Autoimmunity

06:35 Why NMOSD and MOGAD

10:58 B Cells and Targets

15:56 One Time Treatment Question

18:55 Who Should Get CAR-T

21:46 What Patients Experience

26:12 Immune Reset and Side Effects

31:24 Dr. Willekens' Lab Research

35:01 Next Steps and Open Questions

36:24 Future CAR-T Approaches

40:12 Closing Thoughts

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 rare pediatric neuroimmune disorders [00:01:49]. They described the rapid evolution of diagnosis and treatment over the past 30 years, including advances in MS, MOGAD, and aquaporin-4 disease, expanded pediatric inclusion in diagnostic criteria and trials, and improved outcomes with high-efficacy therapies. The doctors outlined their research approaches—Dr. Banwell’s integrative, imaging-focused team science [00:08:45] and Dr. Chen’s clinical research including a project on IVIG duration for relapsing pediatric MOGAD [00:11:00]. The discussed their multidisciplinary clinic supports, continuity into adulthood within one health system, and emphasis on availability, collaboration, community resources, and hope for the future [00:13:35].

View the medical profile of Dr. Brenda Banwell:

https://profiles.hopkinsmedicine.org/provider/brenda-banwell/3154504

View the medical profile of Dr. Haiwen Chen:

https://profiles.hopkinsmedicine.org/provider/haiwen-chen/2703784

Brenda Banwell is the director of the Department of Pediatrics, as well as pediatrician-in-chief and co-director of Johns Hopkins Children’s Center, where she helps manage the hospital’s many clinical and research centers. Dr. Banwell is a renowned expert in the research and treatment of pediatric multiple sclerosis (MS) and other neuroimmune disorders. She specializes in and studies the use of neuroimaging to assess the clinical and cognitive impact of the conditions, as well as the function of the immune system in children with these disorders. Dr. Banwell has published more than 250 manuscripts in high-impact journals, along with over 25 book chapters. In addition, she has over 200 national and international invited lectureships and visiting professorships.

An advocate for pediatric multiple sclerosis needs and research, Dr. Banwell serves as chair of the International Medical and Scientific Board of the Multiple Sclerosis International Federation, and the Myelin Oligodendrocyte Glycoprotein Antibody–Associated Disease (MOGAD) International Research Consortium. She is also chair of the pediatric committee of the National Institutes of Health NeuroNEXT program, which conducts studies on treatments for neurological diseases through academic, private, and industry collaborations. Dr. Banwell currently serves as past-chair of the International Pediatric Multiple Sclerosis Study Group.

Dr. Haiwen Chen is a pediatric neurologist who specializes in caring for children with pediatric onset neuroinflammatory and neuroinfectious diseases, with particular interests in demyelinating disorders and myelitis. Dr. Chen earned her MD and PhD from the University of Maryland School of Medicine. She completed a pediatric neurology residency and fellowship training in neuroimmunology and neurological infectious diseases at The Johns Hopkins Hospital. Dr. Chen’s research training focused on understanding synaptic structure and function using molecular biology and microscopy techniques. Her current research focuses on understanding how oligodendrocyte affect synaptic function in health and disease with the goal of developing strategies for preserving and restoring synaptic function to treat cognitive dysfunction in demyelinating disorders.

00:00 Introduction

01:49 Why Child Neurology

04:24 Choosing Neuroimmunology

08:45 Dr. Banwell's Research Focus

11:00 Dr. Chen's Research Focus

13:35 Clinic Team and Referrals

17:24 Continuity Into Adulthood

20:55 Self Care and Balance

25:26 Advice for New Families

28:57 Hope Through Collaboration

33:45 Closing

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-rnds

SRNA 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 Welcome

01:03 What the Rare Neuroimmune Disorders Symposium Offers

02:35 Meet Sandy and Leah

03:13 Origins of RNDS

08:37 1999 Breakthrough Symposium

12:11 Centers of Excellence Growth

22:31 How RNDS Evolved

31:30 Why RNDS Still Matters

34:45 Leah's Journey with NMOSD

35:43 Leah's RNDS Experience

38:40 Advice and Closing

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 Excellence in Rare Neuroimmune Disorders. She described Northwestern’s multidisciplinary clinic for transverse myelitis, NMOSD, MOGAD, neurosarcoidosis, and related autoimmune conditions, including collaboration with Shirley Ryan AbilityLab and specialists such as pain management, neuro-urology, rehabilitation, and neurosurgery, with an emphasis on faster access to care [04:08]. Dr. Grebenciucova outlined research and clinical trial efforts, including studies on transverse myelitis natural history, optic neuritis therapies, plasma exchange timing, and CAR T-cell strategies [08:36]. View the medical profile of Dr. Grebenciucova:

https://www.nm.org/doctors/1467708305/elena-grebenciucova-md

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 Series Introduction

00:52 Meet Dr. Elena Grebenciucova

01:38 Her Path to Neuroimmunology

04:08 Northwestern TM Clinic Overview

08:36 Research and Clinical Trials

11:16 How to Access the Clinic

12:46 Multidisciplinary Care Team

15:32 Self Care and Lifestyle

18:55 Why Choose Northwestern

21:45 Hope for the Future

23:17 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 Welcome

01:02 Optic Neuritis Basics

02:27 Causes and Percentages

03:14 MS vs NMO vs MOG

06:07 Workup and Testing

07:51 Acute Attack Treatment

09:30 Recovery and Vision Measures

11:57 Pivikto Neuroprotection

15:30 Efgartigimod vs Plasma Exchange

17:59 Repair vs Remyelination

20:15 Q-Cells and Stem Cell Delivery

22:22 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 Welcome

00:53 Cindy's Diagnosis Overview

01:37 Early Symptoms and ER Rush

06:07 Hospital Transfer and TM Diagnosis

08:51 Rehab Reality and New Life

11:27 Accessibility Costs and Support

13:17 Paralympic Table Tennis Quest

17:52 Disability Community and Pride

20:25 Finding Resilience Through Sport

22:34 Mentors and New Athletic Path

28:27 Work Return Then Retirement

31:58 Writing Her Memoir

37:09 Closing Reflections

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 the unmet needs in rare neuroimmune disorders and noted her role on an international panel developing updated NMOSD diagnostic criteria [00:03:40]. She outlined current research on mechanisms of optic neuritis, pregnancy complications and aquaporin-4 antibodies, and developing accessible biomarkers beyond CSF with a future goal of remote monitoring [00:06:01]. Dr. Altıntaş also explained Koç University’s multidisciplinary demyelinating disease center model, emphasizing coordinated consultations, advanced MRI capabilities, shared decision-making, and the value of specialized centers, while expressing hope due to rapid advances in biomarkers and targeted therapies [00:11:43]. You can view the medical profile of Dr. Ayşe Altıntaş here:

https://www.kuh.ku.edu.tr/doctors/ayse-altintas

Ayşe Altıntaş, MD is a professor of neurology at Koç University School of Medicine in Istanbul, Türkiye. She graduated from Ege University Faculty of Medicine in 1986 and completed her neurology residency there in 1992. She received early training in neuroimmunology as a fellow at Mayo Clinic under Prof. Moses Rodriguez and later continued her research at Mayo Clinic with Prof. Claudia Lucchinetti and Prof. Brian Weinshenker, focusing on the animal model, immunopathology, and imaging correlates of multiple sclerosis.

Prof. Altıntaş served at Istanbul University Cerrahpaşa School of Medicine for 23 years before joining Koç University in 2018, where she established a neuroimmunology laboratory and continues to lead clinical and translational research. Her work focuses on multiple sclerosis, neuromyelitis optica spectrum disorders (NMOSD) and MOG antibody-associated diseases (MOGAD), with an emphasis on biomarkers and disease mechanisms. She is actively involved in international organizations, including BioMS-eu, The MOG Project, Siegel Rare Neuroimmune Association (SRNA), MEDEN, the MSBase Scientific Leadership Group, and the Guthy-Jackson Charitable Foundation International Scientific Consortium.

00:00 Welcome and Guest Intro

01:39 Why Neurology

03:40 Choosing Rare Disorders

06:01 Current Research Projects

11:43 Clinic Team and Workflow

15:48 Advanced Imaging and Coordination

17:20 Self Care and Balance

20:20 Advice for New Patients

22:17 Hope for the Future

24:34 Closing

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 discussed eligibility rationale and how lessons from this NMOSD-focused trial could inform future neuroimmune disorder research [09:10]. You can find more information about the trial here:

https://clinicaltrials.gov/study/NCT07573332?cond=NMOSD&intr=CAR-T&viewType=Card&rank=1

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.

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.

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.