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