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 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.

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 Introductions

00:01:24 What Is Transverse Myelitis

00:03:30 Common Causes and Mechanisms

00:06:16 Diagnosis Versus Presentation

00:10:39 Monophasic or Recurrent

00:13:20 Diet Do’s and Don’ts

00:17:25 Aging and Long-Term Health

00:24:53 Peptides and Stem Cells

00:33:07 Fatigue Sleep and CBD or THC-containing gummies

00:37:58 Chronic Pain Options

00:43:55 Physical Therapy Recovery

00:47:56 Spinal Cord Stimulation ArcX

00:51:46 Stopping Pregabalin Safely

00:52:59 Trials and Rehab at Any Age

00:56:00 MOG Titer and Diagnosis

01:00:02 Closing

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 human glial restricted progenitor cells into the spinal cord of people who have been diagnosed with transverse myelitis (TM) [05:49]. He also described research on immune-remodeling therapies for NMO aimed at reducing long-term immunosuppression. Dr. Greenberg illustrated multidisciplinary care at UT Southwestern and Children’s Medical Center, emphasized options for second opinions and clinician-to-clinician remote consultation, and shared hopes for nervous system repair trials and curative immune therapies [07:18]. You can view Dr. Benjamin Greenberg's medical profile here:

https://utswmed.org/doctors/benjamin-greenberg/

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 at Children’s Medical Center [https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program].

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.

00:00 Welcome and Guest Intro

01:41 Path to Neurology

03:50 Why Neuroimmunology

05:49 Research Focus and Trials

07:18 Clinic Team and Referrals

10:31 Self Care and Hobbies

12:17 How the Clinic Can Help

14:16 Hope for Future Therapies

15:56 Wrap Up

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, mimics, and follow-up imaging [00:05:07]. Questions from the community covered acute treatments, recovery, guidance on pseudo-relapse, rehabilitation, and transition from pediatric to adult care [00:14:41].

Dr. Linda Nguyen completed her MD, PhD training at West Virginia University in 2017, and then pediatric neurology residency at the University of California, San Diego in 2022. She then completed a combined pediatric and adult neuroimmunology fellowship at the University of Texas Southwestern in 2024, where she now serves as an Assistant Professor in the Department of Pediatrics. Dr. Nguyen currently sees patients in the Demyelinating Disease Clinic at Children’s Medical Center Dallas.

00:00 Welcome and Guest Intro

01:08 What Is ADEM

01:51 Causes and Who Receives This Diagnosis

02:55 Early Signs and Onset

04:20 Diagnosis and MRI Criteria

05:07 MOG Antibodies and ADEM

07:21 Testing and Relapse Risk

09:06 Recurrent ADEM and Labels

12:34 Mimics and Differential Diagnosis

14:41 Acute Treatment Options

15:38 Recovery Timeline and Rehab

17:47 Long Term Effects and Seizures

21:23 Family Support and Accommodations

24:47 Follow Up Imaging and Relapse Signs

27:25 Managing Fatigue and Headaches

29:31 Supplements, Vaccines, and Genetics

33:40 Pseudo Relapse and Exercise Balance

37:41 Research and Predicting Outcomes

43:14 Transition to Adult Care

45:36 Weakness Sleep Issues and Final Thoughts

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-long development of the cell line and safety monitoring for this study [00:01:35]. He reported no safety signals prompting a trial pause and noted the FDA-approved expansion of eligibility from non-ambulatory participants to those who can walk with assistance, while efficacy results were not yet being shared [00:08:31]. Finally, Dr. Greenberg outlined potential next steps, including Phase 2 studies and expanded populations (e.g., MOGAD and NMOSD diagnoses), as well as future targets [00:17:02].

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 at Children’s Medical Center [https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program].

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.

00:00 Welcome and Guest Intro

01:35 Origins of Q Study

02:46 Getting Cells Into Cord

04:49 Phase One Trial Design

06:31 Safety and Efficacy Measures

08:31 Eligibility Expanded Criteria

11:39 Screening and Selection

14:05 Travel and Site Logistics

15:15 Early Safety Findings

17:02 Next Steps After Phase One

19:01 Beyond Idiopathic Myelitis

23:07 Damage Differences by Disease

25:20 Optic Nerve and Brain Targets

27:29 Expected Outcomes and Vision

28:58 Final Thanks

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 complicaciones y maximizar la función física.

Durante la conversación, la especialista describe cómo se evalúan la discapacidad y el potencial de recuperación mediante la historia clínica, el examen neurológico y la revisión de estudios médicos. También resalta la importancia de un enfoque multidisciplinario que integre neurología, fisiatría, terapia física, terapia ocupacional, terapia del habla, apoyo psicológico y servicios sociales. Además, explica cómo establecer metas realistas centradas en la participación activa del paciente y en su capacidad para retomar sus roles familiares, sociales y laborales.

La Dra. Glendaliz Bosques es una fisiatra certificada por la junta y es Jefa de Medicina de Rehabilitación Pediátrica en UT Health Austin Pediatric Neurosciences at Dell Children’s, una colaboración clínica entre el Dell Children's Medical Center y UT Health Austin. Se especializa en el tratamiento de niños con discapacidades físicas, ya sean congénitas o adquiridas. Además, la Dra. Bosques es profesora asociada en el Departamento de Neurología de la Facultad de Medicina Dell (Dell Medical School) de la Universidad de Texas en Austin.

La Dra. Bosques obtuvo su licenciatura en Ciencias Naturales en la Universidad de Puerto Rico, Recinto de Río Piedras (Río Piedras, Puerto Rico), donde se graduó *summa cum laude*. Obtuvo su título de médica en la Facultad de Medicina de la Universidad de Puerto Rico (San Juan, Puerto Rico), donde se graduó *magna cum laude*. Completó un internado en medicina de transición en el San Juan City Hospital (San Juan, Puerto Rico); una residencia en medicina física y rehabilitación en la Alianza de Medicina Física y Rehabilitación del Baylor College of Medicine y el Centro de Ciencias de la Salud de la Universidad de Texas en Houston; y una subespecialización (*fellowship* en Medicina de Rehabilitación Pediátrica en el Cincinnati Children's Hospital / Universidad de Cincinnati.

A la Dra. Bosques le apasiona comprender las inquietudes de sus pacientes, no solo tal como se manifiestan durante la consulta médica, sino también en lo que respecta a sus dificultades funcionales en el hogar, la escuela y su contexto social. Sus intereses clínicos incluyen la rehabilitación avanzada de enfermedades paralíticas en niños —abarcando etiologías tanto traumáticas como no traumáticas—, mientras que sus intereses académicos se centran en la integración de la gestión de la discapacidad en la educación médica. Forma parte del Consejo de Educadores Médicos y ejerce como Presidenta fundadora de "LatinX in Physiatry", una comunidad destinada a los miembros de la Academia Estadounidense de Medicina Física y Rehabilitación con raíces latinas. Asimismo, es miembro activo de la Asociación de Fisiatras Académicos.

00:00 – Bienvenida y contexto

01:48 – ¿Por qué es importante la rehabilitación?

04:08 – ¿Cuándo debe comenzar la terapia?

05:55 – Trastornos monofásicos vs. recurrentes

10:39 – Evaluación y pronóstico funcional

13:36 – El papel del equipo multidisciplinario

17:07 – Cómo establecer metas realistas

18:07 – Terapias clave en la rehabilitación

20:12 – Rehabilitación pediátrica

23:40 – Manejo del dolor

26:12 – Control de la espasticidad

31:58 – Fatiga y conservación de energía

37:14 – Salud mental y motivación

40:00 – El rol de la familia y los cuidadores

46:15 – Esperanza, innovación y tecnología

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 often adapted from multiple sclerosis and may not reflect NMOSD patients’ unique experiences [04:38]. They shared phase one insights from interviews with 15 individuals showing multi-system impacts [09:51]. They described eligibility for the current anonymous survey (adults 18+ with NMOSD, aquaporin-4 positive or negative, in the US, Canada, EU, UK, or Australia) and noted prior participants can join later phases [13:22]. You can learn more about the study here:

https://redcap.link/nmo-hi

Questions can be sent to Matt and Charlotte:

Matthew_Rathbun@urmc.rochester.edu

Charlotte_Engebrecht@urmc.rochester.edu

Matt Rathbun, BA, graduated from Nazareth University in May of 2025 and is currently pursuing his Master of Public Health degree at Nazareth University. At the University of Rochester Center for Health + Technology (CHeT), he works as a Human Subject Research Specialist, where he coordinates translational research studies focused on the lived experiences of individuals living with rare diseases. This work supports the development and validation of disease-specific PRO measures that capture aspects of disease burden most meaningful to patients. Matt’s interests center on strengthening the relevance, inclusivity, and equity of clinical research. He aims to ensure that clinical research more accurately reflects the real-world impact of disease on patients’ lives. He also works to advance more equitable and patient-centered approaches to treatment evaluation in rare disease communities.

Charlotte Engebrecht, BS, is a graduate of Hobart and William Smith Colleges and a current Master of Science in Clinical Investigations student at the University of Rochester. She serves as a Clinical Trials Project Specialist at the University of Rochester Center for Health + Technology (CHeT), where her work centers on the development and validation of patient-reported outcome (PRO) measures for rare diseases. Charlotte conducts research that is grounded in a commitment to elevating the patient voice as a central pillar of clinical research. Patient-reported outcomes offer critical insight into how diseases and treatments truly impact daily life. She is particularly passionate about ensuring that these perspectives are not only included, but prioritized, in the design and evaluation of clinical trials. Her work focuses on rare diseases, with a specific interest in neuromyelitis optica spectrum disorder (NMOSD), where traditional clinical endpoints often fail to capture the full burden of illness. By integrating patient-centered measurement tools into therapeutic development, Charlotte aims to advance more meaningful and responsive approaches to evaluating new treatments.

00:00 Welcome

02:25 Study Overview

04:38 Why Patient Voices Matter

06:16 How the Study Works

08:29 Who Can Participate

09:51 Phase One Findings

13:22 Join the Survey

15:43 Wrap Up

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 learning alongside families as conditions like MOG antibody disease emerged clinically and his focus on tailoring treatment and supporting clinical trials in a field with few approved therapies [03:37]. Dr. Gombolay outlined her research on biomarker development, a Children’s biobank, advanced MRI collaborations, and participation in the Network of Pediatric MS Centers covering disorders such as MOGAD, NMOSD, optic neuritis, ADEM, and TM [06:36]. They described their multidisciplinary clinic team, highlighted home infusions and telemedicine to reduce burden, and shared personal self-care strategies [10:22]. Dr. Gombolay and Dr. Kannan expressed hope for more trials, remyelination, prevention, and earlier diagnosis aided by AI prompts [20:43].

You can view Dr. Grace Gombolay's medical profile here:

https://www.choa.org/doctors/grace-gombolay

You can view Dr. Varun Kannan's medical profile here:

https://www.choa.org/doctors/varun-kannan

Grace Gombolay, MD, MSc, FAAN is an Associate Professor at Emory University and Director of the Pediatric Neuroimmunology and Multiple Sclerosis Clinic at Children's Healthcare of Atlanta. Her research interest involves biomarker development in pediatric neuroinflammatory diseases including autoimmune encephalitis, multiple sclerosis, MOGAD, and NMOSD.

Varun Kannan, MD graduated from Emory University School of Medicine in 2017. He then completed child neurology residency in 2022, followed by pediatric neuroimmunology and multiple sclerosis fellowship at Baylor College of Medicine and Texas Children's Hospital in 2023. He returned to Emory and Children's Healthcare of Atlanta in 2023, where he has worked closely with Dr. Grace Gombolay in the neuroimmunology program. He is interested in clinical research regarding severe/relapsing forms of rare neuroimmune disorders including autoimmune encephalitis and MOGAD. He is currently involved in multiple upcoming phase 3 clinical trials exploring new disease modifying treatments for pediatric rare neuroimmune disorders. He is also passionate about medical education and is currently one of the Associate Program Directors for the Emory child neurology residency.

00:00 Welcome

01:56 Dr. Grace Gombolay's Journey

03:37 Dr. Varun Kannan's Path

05:06 Kannan's Research Focus

06:36 Biomarkers and Biobank

10:22 Clinic Team and Care

13:44 Self Care and Balance

16:15 Children's Healthcare of Atlanta

20:43 Hopeful Future Ahead

24:49 Closing

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, demographic and clinical models, and immune-cell profiling studies [00:07:55]. Dr. Greenberg detailed controversies around low-positive antibody titers and how cell-based assays and dilution thresholds affect specificity [00:21:38]. He outlined concepts and progress in tolerance-inducing approaches such as Tregs and CAR T therapy, described differences from B-cell–depleting drugs like rituximab [00:26:32] Finally, Dr. Greenberg highlighted the satralizumab meteoroid trial and the ongoing cosMOG study of rozanolixizumab, emphasizing community engagement, registries, surveys, and trial participation to accelerate access and potential curative strategies [00:38:36]. You can learn more about The MOG Project here:

https://mogproject.org/

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 at Children’s Medical Center [ https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program ].

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.

00:00 Welcome

01:44 Hosts and Guest Intro

05:06 Research Buckets Overview

07:55 Predicting Relapse Risk

11:46 Tregs and Immune Brakes

17:40 Attack Severity and Relapse

19:24 MOGAD Criteria Updates

21:38 Titers Explained Simply

26:32 Targeting MOG Antibodies

29:11 CAR T and Immune Reset

32:39 When Criteria Changes

33:52 Tolerance Research Boom

34:48 From Animals to Trials

37:17 Community Drives Progress

38:36 Meteoroid and cosMOG Clinical Trials

41:39 How These Drugs Work

44:02 FDA Approval and Access

45:49 Insurance Switch Concerns

48:39 Rituximab Dosing Debate

52:41 Why Antibodies Develop

54:18 Future Attack Patterns

55:47 CAR T Versus Rituximab

57:10 Lab Research and Support

01:00:51 Hope for a Cure

01:02:14 Closing and Resources

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 plasma exchange for severe or steroid-refractory attacks, as well as evolving long-term options including IVIG/subcutaneous IG and IL-6 blockade [00:04:14]. Audience questions covered relapse prediction, vision recovery timelines, fatigue, pregnancy, heredity, symptom interpretation, and whether to stop immunotherapy when antibodies become undetectable [00:12:13]. Finally, Dr. Chen described current and upcoming research, including a trial that is currently enrolling participants, and future prospects for optic nerve regeneration while cautioning against unproven stem cell clinics [00:41:37].

John J. Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees and completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa. He then took a position at the Mayo Clinic in 2014 where he specializes in Neuro-Ophthalmology. Currently, he serves as a Consultant and Professor of Ophthalmology and Neurology, and Neuro-Ophthalmology Fellowship Director at the Mayo Clinic.

Among Dr. Chen’s awards and honors are the AAO Senior Achievement Award, Top Doctors in Minnesota, the Heed Fellowship, Real World Ophthalmology Inspiring Academic Leader Award, Ophthalmology Teacher of the Year Award four times leading to induction to the Educators Hall of Fame, and the Mayo Clinic Distinguished Educator Award – awarded to the top educator at Mayo Clinic in Rochester. He is an Associate Editor for Ophthalmology and the Journal of Neuro-Ophthalmology, has authored more than 250 peer-reviewed publications, and focuses his research on ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, particularly NMOSD and MOG antibody–associated disease.

00:00 Welcome and Introductions

01:08 What Is MOGAD?

02:42 Causes and Triggers

03:23 How MOGAD Is Diagnosed

04:14 Acute Attack Treatments

06:35 Steroid Side Effects

08:13 Testing During Treatment

09:09 Long Term Therapies

12:13 Interpreting MOG Positivity

16:51 Eye Symptoms and Vision Fluctuations

20:12 Antibody Titers and Severity

21:19 Relapse Risk After First Attack

23:09 Seizures and Encephalitis

24:17 Vision Recovery After Optic Neuritis

25:13 Acute Treatment Window

25:57 Hereditary Risk Questions

26:35 Stopping Azathioprine Safely

29:56 Managing Post Attack Pain

30:16 Steroids IVIG and Plasma Exchange

32:08 Infections as Triggers

33:01 Retesting MOG Antibodies

35:01 Fatigue and Workup

36:23 Prognosis and Life Expectancy

37:45 Tinnitus and Brain Pressure

39:05 Pediatric and Pregnancy Concerns

41:37 Trials and Future Regeneration

46:05 Research Resources and Wrap Up

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 Sclerosis and Neuroimmunology Center, a designated Center of Excellence in Rare Neuroimmune Disorders. Dr. Wilson described her interest in individualized, longitudinal neuroimmunology care and the rapid evolution of treatments [01:47]. She highlighted her research on social determinants of health, including environmental stressors, caregiver impacts, and the roles of race and ethnicity in pediatric neuroinflammatory outcomes [05:21]. Dr. Wilson outlined how patients can self-refer or be referred, and described the center’s multidisciplinary model involving neuroimmunology, rheumatology, neuro-ophthalmology, neuropsychology, mental health, school support, social work, rehabilitation, and research resources [07:49]. She shared self-care strategies and expressed hope for faster diagnosis, earlier treatment, and biomarkers to better track disease activity and prevent attacks [13:31]. You can view Dr. Wilson's medical profile here:

https://www.cincinnatichildrens.org/bio/w/elizabeth-wilson

Elizabeth Wilson, MD is a pediatric neurologist at Cincinnati Children’s hospital with specialized training in neurology and neuroimmunology. She received a Bachelor of Science in Neurosicence from Lafayette College in Pennsylvania. She then completed medical school at Boston University, Pediatric residency at Boston Children’s Hospital/Boston Medical Center, and Pediatric neurology residency at Boston Medical Center. She went on to pursue a fellowship in Neuroimmunology at Massachusetts General Hospital/Boston Children’s Hospital. She recently became the director of the Multiple Sclerosis and Neuroimmunology Center (MS-NIC) at Cincinnati Children’s Hospital. Through her research she aims to understand how a patient’s environment, including life stressors, interacts with their body and genetics in inflammatory neurologic conditions, such as multiple sclerosis. She believes that by studying this relationship we can better manage these disorders and advocate for changes that will improve patient outcomes.

00:00 Introduction

01:47 Why Pediatric Neurology

03:27 Choosing Neuroimmunology

05:21 Research And Health Equity

07:49 Inside Cincinnati Children’s Hospital and the Multiple Sclerosis and Neuroimmunology Center

11:07 Multidisciplinary Team Support

13:31 Clinician Self Care

15:14 Considering The Clinic

17:29 Hope For The Future

18:50 Closing

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 she explained how immune checkpoint inhibitors can trigger immune-related neurologic adverse events that don’t always fit classic rules [00:01:48]. She reviewed how these syndromes differ from other autoimmune neurologic disorders and outlined common subacute presentations such as limbic encephalitis, brainstem encephalitis, cerebellar ataxia, seizures, and neuropathies [00:08:09]. Dr. Shah emphasized prompt evaluation with neurologic exam, MRI/EEG/EMG as appropriate, blood and CSF antibody testing, cancer screening, and coordinated oncologic and immunosuppressive treatment to prevent worsening disability [00:17:24].

Shailee Shah, MD is a Clinical Assistant Professor in the Neuroimmunology Division with Northwestern Medicine and Northwestern University. She is an autoimmune neurologist with expertise in the management of paraneoplastic and autoimmune neurological diseases. She also treats rare neuroimmunological diseases such as neuromyelitis optica and MOG associated disease. She is co-director of the Northwestern Medicine Paraneoplastic Neurological Disease Clinic.

00:00 Welcome and Guest Intro

00:58 What Is Paraneoplastic

01:48 New Criteria and Antibodies

04:59 Diagnostic Challenges and ICI

08:09 Paraneoplastic vs Autoimmune

10:22 How Common Are They

13:03 Early Symptoms to Watch

17:24 When to Seek Care

19:09 Testing and Workup

24:20 Paraneoplastic Myelitis

27:55 Delays and Specialty Centers

31:38 Cancer Link and Treatment

37:16 Changing Therapies

38:19 Recovery and Prognosis

39:58 Patient Advice and Hope

42:52 Closing

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, and the need to rule out infections before immunosuppressive treatment [07:08]. Dr. Grebenciucova reviewed urgent relapse management with IV steroids and early plasma exchange, side effects, long-term preventive therapies (FDA-approved and off-label) [14:02]. Finally, she answered community questions on supplements, chronic optic neuritis, rehab appeals, pain/spasticity, pregnancy planning, long-term treatment duration, mental health, seronegative syndromes, follow-up frequency, and recovery expectations [25:22].

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 Welcome and Introduction

01:05 What Is NMOSD?

01:59 Symptoms and Relapse Signs

03:27 What Causes NMOSD?

07:08 How NMOSD Is Diagnosed

10:09 Key Tests and Pitfalls

14:02 Acute Attack Treatment

17:18 Steroid Side Effects

22:19 Long-Term Therapies Worldwide

25:22 Community Questions, Beginning with Vitamins

27:40 Optic Neuritis Breakthroughs

28:47 Chronic Optic Nerve Inflammation

29:19 Winning Insurance Appeals

31:23 Waist Band Pain and Spasticity

34:04 Pregnancy and Family Planning

37:40 Stopping Long-Term Treatment

39:40 Long-Term Side Effects

43:04 Mood and Personality Changes

49:47 Trials for Seronegative NMOSD

52:55 Follow Up Visit Schedule

55:34 Relapse Recovery Timeline

58:02 Closing

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 brain lesions often did not result in additional symptoms [00:02:41]. The findings suggested that brain lesions didn't significantly impact long-term outcomes, which may provide reassurance for patients with concerning MRI results [00:06:43]. Finally, they discussed the study’s implications for better understanding different phenotypes of MOGAD and improving patient prognosis. Future research directions include more detailed MRI analysis and cognitive outcome assessment [00:12:29]. You can read about this multicenter study here:

https://pubmed.ncbi.nlm.nih.gov/41167051/. This work was completed with philanthropic support from the Global Autoimmune Institute and Fighting Fires with Owen.

Vivien Xie, MD, is a pediatric neurologist and neuroimmunology fellow at Children’s National Hospital and MedStar Georgetown University Hospital. Originally from Baltimore, she earned her undergraduate degree in biology from the University of Maryland, College Park and her medical degree from the University of Maryland School of Medicine. She then completed a child neurology residency at Children’s National Hospital, where she discovered a passion for helping young patients and their families navigate rare and often life-long neuroimmunologic disorders.

Dr. Xie's research interests include pediatric multiple sclerosis and MOG antibody–associated disease, with publications and presentations spanning national and international conferences. She is a committed academic clinician dedicated to advancing clinical trials and research initiatives to improve diagnosis and care for children with rare neuroimmunologic conditions.

00:00 Introduction

01:28 Understanding MOG Antibody Disease

02:41 Research Motivation and Background

05:33 Study Design and Methodology

06:43 Key Findings and Implications

12:29 Future Research Directions

14:10 Conclusion and Acknowledgements

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 [00:04:14]. They discussed the concept of steroid dependence and the complications that arise when tapering down the steroid dose [00:05:46]. Dr. Flanagan highlighted alternative treatments to manage steroid dependence and emphasized the importance of working closely with healthcare providers to safely reduce steroid use over time [00:09:42].

Eoin Flanagan, MB, BCh is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He completed his medical school training at University College Dublin in Ireland in 2005. He did a medical residency in Ireland and then completed neurology residency, fellowships in neuroimmunology and a master's in clinical and translational science at Mayo Clinic (Rochester, MN). He works in the Autoimmune Neurology and Multiple Sclerosis Clinics and the Neuroimmunology Laboratory at the Mayo Clinic.

His clinical expertise and research are focused on inflammatory myelopathies and their imaging patterns, myelin oligodendrocyte glycoprotein (MOG) antibody associated disorder, neuromyelitis optica spectrum disorders, autoimmune encephalitis, paraneoplastic neurologic disorders, and multiple sclerosis. He is principal investigator on an NIH RO1 grant studying MOG antibody associated disorder.

00:00 Introduction

01:25 Understanding Steroids in MOG Antibody Disease

04:14 Steroid Dosage and Administration

05:46 Steroid Dependence in MOGAD Patients

09:42 Managing Steroid Dependence

14:02 Balancing Inflammation Control and Steroid Risks

17:31 Conclusion

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 streaming platforms.

What this means for you: If you are already subscribed to our "Ask the Expert" series, you will automatically be subscribed to "SRNA Soundwaves" once the merge happens on January 5th. If you are subscribed to "ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, or Community Meets Clinic," make sure to subscribe to "Ask the Expert," which will be renamed “SRNA Soundwaves” on January 5th, to continue to get new episodes in your feed. You can subscribe here: https://creators.spotify.com/pod/profile/srna-ask-the-expert/

We hope this change helps our community navigate our educational content more easily and enjoy a smoother, more organized podcast experience. If you have questions about the upcoming change, please email: podcast@wearesrna.org

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 neuroimmunology and her involvement in clinical research, particularly in MOG antibody disease (MOGAD) [00:01:32]. She elaborated on the multidisciplinary approach at Children's National Hospital that supports comprehensive care and ongoing research for pediatric neuroimmune disorders [00:04:58]. Dr. Kornbluh emphasized her commitment to holistic care and the future advancements in treatment and diagnostics for rare neuroimmune conditions [00:05:44].

Alexandra Kornbluh, MD is Associate Program Director for the Child Neurology residency and Co-Program Director of the Pediatric Neuroimmunology Fellowship at Children’s National Hospital in Washington, D.C. She completed her medical training at the Johns Hopkins School of Medicine and her pediatric and child neurology residency training through Nationwide Children’s Hospital in Columbus, Ohio. She then pursued additional subspecialty fellowship training in pediatric multiple sclerosis and related demyelinating diseases. Through this fellowship, she gained expertise in caring for both children and adults across the age-span of neuroinflammatory diseases at the Children’s Hospital of Philadelphia and the University of Pennsylvania.

Dr. Kornbluh sees patients from the greater Washington, D.C., area as well as second opinion consultations for pediatric demyelinating disease and related disorders within the multidisciplinary neuroimmunology program. She also evaluates patients with headaches and provides general neurology care for patients.

Dr. Kornbluh serves as the Director of Investigational Therapeutics through the pediatric neuroimmunology program and is the principal investigator for clinical research studies in pediatric demyelinating conditions. Her research interests include pediatric multiple sclerosis (MS), myelin oligodendrocyte glycoprotein antibody-associated disorders (MOGAD), and other related demyelinating conditions. You can view her medical profile here:

https://appointments.childrensnational.org/provider/alexandra-behar-kornbluh/2359826

01:32 Dr. Kornbluh's Journey into Neuroimmunology

03:29 Focus on Rare Neuroimmune Disorders

04:58 Children's National Neuroimmunology Clinic

05:44 Multidisciplinary Care Approach

07:31 Personal Insights and Self-Care

08:25 Message to Families and Final Thoughts

09:48 Hope for the Future

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 and patience in relationships [00:09:37]. Finally, they provided advice on dating with a chronic illness and the significance of self-love and finding a supportive partner [00:35:06].

Johnney (Doug) Newby lived most of his life in Colorado, only moving recently to Pennsylvania in the last year. Doug has a background in criminal justice and worked as a security guard the last few years in Colorado. Doug became symptomatic more than ten years ago with neuromyelitis optica spectrum disorder (NMOSD) spending many weeks in and out of hospitals with transverse myelitis (TM) and optic neuritis (ON). Doug is newly married to Heather ,who is also an NMO patient, and they’re making a life together in Pennsylvania along with their dog, Bailey and their cats.

Heather Dawn Newby has lived most of her life in Pennsylvania. After earning her bachelor's degree in Environmental Science and her master's degree in Environmental Studies, she returned home to her family’s dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for neuromyelitis optica spectrum disorder (NMOSD) around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly married to Doug, a fellow NMOSD patient, and they are creating a life together in Pennsylvania along with their dog, Bailey and their cats.

Caitlyn Flickinger is a care partner to Landy Thomas, her fiancée, who has NMOSD. Starting college at only 14 years of age, Caitlyn is pursuing her bachelor's degree in political science, with minors in sociology and business. A prolific writer, Caitlyn spends most of her free time writing sci-fi books and letters to her soon-to-be wife, dreaming of one day breaking into the industry and getting her work published and in the hands of readers. Caitlyn also serves as president of the UCF student club she and Landy helped establish, called Epoch: A Minecraft SMP.

00:00 Introduction and Guest Bios

02:27 Meet Doug and Heather Newbie

06:22 Meet Landy Thomas and Caitlyn Flickinger

09:37 Doug and Heather's Love Story

14:46 Landy and Caitlyn's Love Story

20:00 Living with NMOSD

25:50 Navigating Relationships with NMOSD

26:38 Commitment and Understanding

29:47 Challenges and Support

35:06 Dating Inside and Outside of the Community

47:00 Advice for NMOSD Patients on Dating

55:17 Final Thoughts and Encouragement

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 disorder. Barbara shared findings from her research on how siblings provide crucial support to parents and the positive impacts this has on family dynamics [00:04:31]. They explored the concept of parentification and the importance of assigning age-appropriate tasks to siblings [00:25:10]. Barbara also provided advice on fostering healthy sibling relationships and the significance of open communication [00:35:34].

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

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

00:00 Introduction

00:28 Meet Barbara Babcock

02:08 Theme Four: Support from Siblings

04:31 Siblings' Characteristics and Their Impact

06:57 Voluntary Help from Siblings

25:10 Parentification: Understanding the Concept

36:34 Fostering Healthy Sibling Relationships

39:20 Conclusion and Final Thoughts

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. Dr. Otten elaborated on her work with child neurology and pediatric neuroinflammatory disorders, while Dr. Roy discussed his research interests and the complexities of neuroimmunology [00:06:03]. They shared insights into their multidisciplinary clinic teams and how new patients can expect to be integrated into their care systems [00:11:01]. Both doctors highlighted the promising future of treatments for rare neuroimmunologic disorders and shared how they personally manage the emotional toll of their work [00:17:41]. You can view their medical profiles here:

https://www.uwmedicine.org/bios/shuvro-roy

https://www.seattlechildrens.org/directory/catherine-ellyn-otten/

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.

Catherine E. Otten, MD is a Clinical Associate Professor of Neurology at the University of Washington in the Neurology Department, specializing in child neurology and pediatric neuroinflammatory disorders. Dr. Otten is the Neuroimmunology Medical Director at Seattle Children's Hospital where she runs subspecialty programs for patients with rare neuroimmune conditions. She is board-certified in Pediatrics and Neurology. She leads the Pediatric Neuroimmunology clinic serving patients with multiple sclerosis, MOGAD, NMOSD, transverse myelitis, optic neuritis, acute flaccid myelitis, and other neuroimmune conditions.

Dr. Otten co-leads the Inflammatory Brain Disorders Clinic, a multidisciplinary hub serving patients with autoimmune encephalitis, autoinflammatory disease, and other forms of brain inflammation. Her work extends across Alaska, where she has provided care in outreach clinics in rural Alaskan communities for the past decade. Her academic work includes collaboration with CDC as a consultant on acute flaccid myelitis, as well as published work on autoimmune encephalitis, demyelinating disease, and other neuroimmune conditions. She is committed to the care of pediatric patients with neuroinflammatory diseases and their families across the Pacific Northwest.

00:00 Introduction

02:01 Journey into Neurology and Neuroimmunology

06:03 Research and Clinical Interests

11:01 Multidisciplinary Clinic Teams

17:41 Self-Care and Wellness

25:04 Future of Rare Neuro Immune Disorders

27:57 Conclusion and Final Thoughts

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 diagnoses and research [00:05:10]. Dr. Greenberg elaborated on the advancements in testing and understanding of associated disorders like NMOSD and MOGAD since 2002 [00:11:10]. Both experts stated that the shift from "transverse myelitis" to "myelitis" will aid future research, treatments, and patient care [00:17:27]. They reassured patients that these changes would essentially refine their care but not alter it dramatically [00:23:40]. They encouraged patients to stay informed and communicate with their healthcare providers about these updates [00:28:58].

Kyle Blackburn, MD is an Assistant Professor in the Department of Neurology at UT Southwestern Medical Center in Dallas, Texas. He specializes in neuroimmunology and has clinical interests in antibody-mediated neurologic disorders, including autoimmune encephalitis, epilepsy, and ataxias; neurologic complications of cancers, including paraneoplastic disorders and checkpoint inhibitor/CAR T-cell toxicity; and demyelinating disorders, including sarcoidosis, neuromyelitis optica, myelin oligodendrocyte glycoprotein (MOG)-associated disease, and multiple sclerosis.

Dr. Blackburn earned his medical degree at the University of Kentucky College of Medicine. He performed his residency in adult neurology at UT Southwestern, serving his final year as Chief Resident, and stayed to complete a fellowship in neuroimmunology, during which he earned the James T. Lubin Clinician Scientist Award from the Siegel Rare Neuroimmune Association (SRNA). He joined the UT Southwestern faculty in 2020.

Benjamin M. Greenberg, M.D., M.H.S. is a Professor and the Cain Denius Scholar in Mobility Disorders in the Department of 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 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 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.

00:00 Introduction

00:58 Overview of Myelitis and Diagnostic Criteria

02:57 Historical Context and Importance of Updated Criteria

05:10 Challenges with Current Terminology

11:10 Changes in Understanding and Diagnostic Approaches

17:27 Implications for Patients and Clinical Practice

23:40 Impact on Research and Future Directions

28:58 Patient Advocacy

31:17 Conclusion

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 [00:01:48]. Key topics included the role of daily skin checks, moisture management, and the importance of pressure relief [00:11:48]. They also reviewed how nutrition, rehabilitation, and technology can aid in the prevention and treatment of skin breakdown [00:17:51]. Lastly, the episode covered the signs of serious skin issues and when to seek medical attention [00:50:18].

Janet Dean, MS, RN, CRRN, CRNP attended nursing school at the University of Michigan, completing a master’s degree in parent-child nursing in 1979. She is a board-certified Pediatric Nurse Practitioner and is also a Certified Rehabilitation Registered Nurse. She has over 30 years of experience in the specialty of pediatric rehabilitation. Prior to becoming a nurse practitioner, Ms. Dean enjoyed 10 years as a staff nurse on a pediatric rehabilitation unit caring for children with physical and developmental disability. As a nurse practitioner for the International Center for Spinal Cord Injury, she specialized in the prevention and treatment of the common health consequences of pediatric spinal cord injury. The focus of her practice is on health promotion and health maintenance.

Florence Hanssen, RN is a nurse coordinator at the Kennedy Krieger Institute’s International Center for Spinal Cord Injury. She obtained her licensure in 1993, and her bachelor’s in nursing science from Ohio University in 2014. Her primary interests are in wound care and the continuous outpatient healthcare for those living with spinal cord injury/ disease. She earned her wound care nurse certification in 2023.

00:00:00 Introduction

00:00:17 Meet the Experts

00:01:48 Understanding Skin Structure and Function

00:03:59 What is Skin Breakdown?

00:05:49 Impact of Paralysis on Skin Health

00:08:15 Causes of Skin Breakdown

00:11:48 Preventing Skin Breakdown

00:14:00 Mechanical Injuries and Skin Health

00:16:21 Hygiene Practices for Skin Health

00:17:51 Nutrition and Skin Health

00:20:17 Rehabilitation and Skin Health

00:23:15 Preventing Pressure Ulcers

00:28:58 Managing Muscle Spasms

00:31:28 Identifying and Treating Minor Skin Breakdown

00:34:14 Understanding and Treating Minor Skin Irritations

00:36:24 Identifying Pressure Points and Vulnerable Areas

00:40:17 Managing Scrapes and Tears During Transfers

00:43:21 Preventing Skin Breakdown Under Braces

00:47:20 Addressing Skin Breakdown in Perineal Areas

00:50:18 Recognizing and Treating Serious Skin Breakdown

01:03:46 The Role of Technology and Resources in Skin Care

01:06:32 Final Thoughts and Advice

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 joined by Barbara Babcock to further explore her research concerning the changing beliefs around parenting when a child has been diagnosed with a rare neuroimmune disorder. They explored the theme of finding a balance in attending to the needs of all children in the family and discussed the importance of fairness and communication between parents [00:02:18]. The conversation also touched on the cultural differences and how these influence family dynamics and parenting strategies when one child requires more attention [00:13:33]. Barbara shared various strategies families use to ensure each child feels valued, such as integrating quality time into existing routines and understanding the different needs of children at various developmental stages [00:18:30].

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

00:00 Introduction

00:28 Meet the Expert: Barbara Babcock

02:18 Theme Three: Balancing Sibling Needs

03:59 Parental Communication and Mutual Support

13:33 Cultural and Family Contexts

18:30 Building Quality Time with Siblings

26:13 Parental Guilt and Compensation

35:09 Conclusion

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 continued her conversation with Barbara Babcock. In this episode, Barbara, a family therapist, discussed her research of parental fatigue and limited time distribution among families of children who have been diagnosed with a rare neuroimmune disorder. She elaborated on the non-stop nature of caregiving roles and the impact of work and daily parenting responsibilities on parental exhaustion [00:05:10]. Barbara emphasized the importance of parents finding ways to cope, from getting social support to attending to their own basic needs [00:17:35]. She highlighted the significance of confidence in navigating the complexities of family life and caregiving for a child with special needs [00:21:27].

00:00 Introduction

01:29 Theme Two: "I Can Only Split Myself So Many Ways"

05:10 Parental Exhaustion and Coping Mechanisms

17:35 Balancing Social and Extracurricular Activities

21:27 Building Confidence as a Family

23:28 Conclusion

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

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 joined by Barbara Babcock to further explore her research concerning the changing beliefs around parenting when a child has been diagnosed with a rare neuroimmune disorder. Barbara discussed how beliefs around being fair as a parent could change and the various sub-themes supporting this idea, including redefinition of fairness and the challenge of balancing attention among children [00:03:30]. She highlighted the impact of societal and historical contexts on parenting norms and the struggles parents face in managing new caregiving responsibilities and learning new skills [00:12:45]. The importance of redefining what it means to be a good parent in the context of a child with additional needs was emphasized throughout the episode [00:24:00].

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

00:00 Introduction

00:27 Meet the Expert: Barbara Babcock

01:38 Exploring Parental Beliefs and Fairness

03:37 Balancing Attention Among Children

07:49 Cultural and Societal Influences on Parenting

11:08 Challenges in Managing Illness and Fairness

19:37 Learning New Skills and Roles

25:52 Redefining Good Parenting

27:43 Conclusion

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 collection of work from individuals who have been diagnosed with rare diseases [00:02:35]. Landy read select poems from Rare Visions, and the guests offered personal insights into their adapted lives and the significance of accessible technology [00:08:57]. Finally, they discussed the importance of raising awareness about rare diseases and accessibility issues through poetry [00:31:05].

Roopa Ramamoorthi, PhD is a scientist in the field of global health and published poet as well as director for the Catalyst program and InVent Fund at UC San Francisco. Her poetry essays and short stories have appeared in over 80 publication including various anthologies and "Perspectives" on NPR. Most recently, she conducted poetry workshops with people living with rare diseases. She feels honored to have now worked with those with rare eye diseases and to help send their voices out into the world. The poetry collections Rare Sounds and Rare Visions were published by the Ipsen Foundation:

https://www.fondation-ipsen.org/?s=Roopa+Ramamoorthi

Marie Abrego is proud to be the Welcome Manager for The Sumaira Foundation. Diagnosed with NMO in 2007 when she was only 14 years old, she shared the story of her diagnosis a few years ago, but as she learned, life doesn’t stop with NMO. In 2019, she joined The Sumaira Foundation as one of the first patient TSF Ambassadors representing the state of New Mexico.

00:00 Introduction

01:18 Meet Marie Abrego and Dr. Roopa Ramamoorthi

01:58 The Power of Poetry in Rare Disease Awareness

04:37 Challenges of Living with Vision Impairment

09:12 Adapting to Vision Loss: Tools and Techniques

14:14 Expressing Through Poetry: Marie Abrego's Work

21:21 Makeup and Femininity

22:33 The Emotional Impact of Blindness

25:20 Reading and Discussing Poems by Landy Thomas

33:29 Leah Campbell's Powerful Poems

38:21 Final Thoughts

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 those with neuroimmune disorders [00:03:35]. He discussed the specific benefits of FES, including muscle strengthening and managing spasticity, and shared success stories demonstrating its impact [00:09:53]. Dr. Bellman also highlighted new developments in FES technology, particularly the integration of AI [00:33:28].

Matthew Bellman, PhD is a Founder and the Chief Technology Officer for MYOLYN, Inc. Dr. Bellman is a Triple-Gator with bachelor’s, master’s, and doctorate degrees in mechanical engineering from the University of Florida (UF). In 2013, Dr. Bellman co-founded MYOLYN to commercialize his doctoral research on mobility assistance for people with paralysis and muscle weakness using functional electrical stimulation (FES) and robotics. In his time at MYOLYN, Dr. Bellman has been responsible for building a certified medical device quality management system, managing a team of engineers in the design and development of two Class II medical devices, obtaining grant funding from the National Institutes of Health (NIH), and growing a small business.

Dr. Bellman has been awarded the Entrepreneurial Spirit Award by UF’s Center for Entrepreneurship and Innovation, the O. Hugo Schuck Best Paper Award by the American Automation Control Council, and the Outstanding Young Alumnus Award by the UF Department of Mechanical and Aerospace Engineering. In 2019, Dr. Bellman secured MYOLYN’s place as a finalist in the Toyota Mobility Unlimited Challenge. In addition to his role at MYOLYN, Dr. Bellman has also served as a member of the Board of Directors for NextStep Orlando’s Paralysis Recovery Center and as a member of the Advisory Council for the American Bionics Project. Dr. Bellman’s work has been published in high-impact scientific journals including Muscle & Nerve, IEEE Transactions on Control Systems Technology, and The Journal of NeuroEngineering and Rehabilitation, and he has been an invited guest speaker at universities around the world including UF, École Normale Supérieure (ENS) de Lyon, and the Tokyo Institute of Technology. When not at work, Dr. Bellman can be found trail running or relaxing at home with his wife and family.

00:00 Introduction

00:31 Meet Dr. Matthew Bellman

00:52 Understanding Functional Electrical Stimulation (FES)

01:30 Historical Context and Early Applications of FES

03:35 How FES Works in the Body

07:05 FES for Spinal Cord Damage and Neuromuscular Disorders

09:53 Benefits of FES for Various Symptoms

13:44 Evidence and Secondary Benefits of FES

17:47 Typical FES Session and Accessibility

24:06 Success Stories and Patient Feedback

29:25 Barriers to FES Adoption

33:28 Future Developments in FES Technology

36:46 Final Thoughts and Encouragement

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 about her research on how parents navigate the needs of their non-diagnosed children alongside those of a child with a rare neuroimmune disorder. She described the demographic details of the participating families and the process of recruiting participants for the study [00:02:25]. Barbara highlighted her unique perspective and the potential biases she brought to the research as a non-parent [00:05:33]. She emphasized the importance of honesty and vulnerability in sharing experiences, as well as focusing on the strengths of families facing these challenges [00:09:46].

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

00:00 Introduction

01:29 Overview of Barbara's Research

02:25 Participant Demographics and Methodology

05:33 Researcher’s Perspective and Bias

09:46 Themes and Insights from the Research

12:24 Conclusion

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 discussed the challenges faced by parents raising a child with a rare neuroimmune disorder and the impact on non-diagnosed siblings. Barbara shared her personal journey with transverse myelitis (TM) and how it led her to conduct research on this topic [00:02:20]. She explored themes from her research, highlighting fairness in parenting, and the role of sibling support [00:13:03]. Finally, Barbara emphasized the importance of adapting parenting strategies to balance the needs of all children in the family [00:15:42].

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

00:00 Introduction

01:26 Meet Barbara Babcock: A Journey into Family Therapy

02:20 Barbara's Personal Experience with TM

03:20 Creating Support Systems for Families

06:35 Research Focus: Parenting and Sibling Dynamics

13:03 Themes from the Research

15:42 The Importance of Fairness and Balance

18:38 Challenges and Guilt in Parenting

24:33 Conclusion

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 neuroimmunology, driven by her fascination with the brain and problem-solving [00:01:34]. She discussed her research focuses, including demyelinating disorders in Latin America and outcomes in Latino communities in the U.S. [00:03:26]. Dr. Diaz detailed the multidisciplinary approach of The Bodford Family Transverse Myelitis Center, highlighting the range of specialists involved in patient care [00:07:17]. She emphasized the importance of staying active and working with a care team for recovery and shared her hopes for future treatments and potential cures for rare neuroimmune disorders [00:11:08]. You can view the medical profile of Dr. Diaz here:

https://www.unchealth.org/care-services/doctors/d/monica-maria-diaz-md-ms

Monica Maria Diaz, MD, MS is an assistant professor of neurology in the Division of MS/Neuroimmunology at UNC. She sees patients in the multiple sclerosis (MS) and transverse myelitis (TM) clinics of UNC, providing care to patients with multiple sclerosis and autoimmune and infectious diseases affecting the nervous system. She completed her neurology residency at Yale and neuro-infectious/MS/neuroimmunology fellowship at UC San Diego.

Dr. Diaz has lived and worked in Peru intermittently since 2019 through an NIH Fogarty fellowship and continues to lead studies in Peru with the goal of improving neurological outcomes in Latin America, including studies on epidemiology/risk factors for dementia, cognitive impairment in Peruvians living with HIV, and transverse myelitis in Peru. She is the co-director of a bilateral neurology resident rotation between UNC and Universidad Peruana Cayetano Heredia in Lima, Peru.

00:00 Introduction
00:54 Meet Dr. Monica Diaz
01:26 Dr. Diaz's Journey into Neuroimmunology
03:26 Research Focus and Interests
07:17 The Multidisciplinary Clinic at UNC
11:08 Self-Care and Personal Insights
13:23 Message to Patients and Hope for the Future
16:23 Conclusion

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 breathing [00:01:05]. She discussed how pelvic floor therapy is adapted for individuals with rare neuroimmune disorders [00:04:59]. The discussion included both physical exercises and emotional work integral to the therapy [00:07:42]. Practical tips for seeking pelvic floor therapy and insurance considerations were also covered [00:10:42]. The episode concluded with encouragement to explore this underutilized service [00:19:23].

00:00 Introduction

02:03 Understanding Pelvic Floor Therapy

04:59 Pelvic Floor Therapy for Rare Neuroimmune Disorders

07:42 The Emotional and Mental Aspects of Pelvic Floor Therapy

10:42 Practical Insights and Patient Experiences

19:23 Getting Started with Pelvic Floor Therapy

27:38 Conclusion

Jessica Ekberg, OTR/L is a business owner, avid runner, former pants peer, prolapse owner, postpartum pain sufferer, mom of two, and certified pelvic floor therapist. Jessica is extremely passionate about helping men and women be the best version of themselves they can. Her goal is to bring Pelvic Floor Health discussions to the forefront of what she does, to help dispel myths and educate about facts. The lack of information and effective treatment in the community can leave people suffering in silence. Now that she has been working in pelvic health for almost five years, she realizes just how critical pelvic health is to all of us. She started her pelvic health journey after experiencing “a lot of problems” when returning to running post baby.

Jessica’s advice is to stop ignoring or putting off taking care of yourself. The core makes up the foundation of the body and if it is not functioning properly, it can impact several systems within the body. Some of the problems that clients present with are incontinence, hernias, pelvic pain including hips/back/genital/rectal/tailbone, respiratory difficulties, heavy/painful periods, menopause, endometriosis, pre/during/postpartum care, constipation, and sexual (including erectile) dysfunction. Jessica’s approach involves assessing the whole body, putting the puzzle together in order to determine the driver of the dysfunction and then developing a treatment plan to solve the problem. Her goal is to help clients return to doing all of the things they love, as quickly and safely as possible.

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 the Division of Neuroimmunology and Neuroinfectious Disease at Mass General and an Associate Professor at Harvard Medical School. He shared his journey into the field of neuroimmunology, discussed his research on the causes of MS, NMOSD, and MOGAD, and provided insights into the multidisciplinary clinic team at Mass General [01:27]. The episode also touched on the importance of understanding and reeducating the immune system to improve patient outcomes [15:22]. You can view the medical profile of Dr. Levy here:

https://doctors.massgeneralbrigham.org/provider/michael-levy/1090088

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 Introduction
00:54 Meet Dr. Michael Levy
01:27 Dr. Levy's Journey into Neuroimmunology
04:50 Research Focus and Discoveries
08:54 Clinic Operations at Mass General
12:12 Self-Care and Professional Fulfillment
15:22 Future of Neuroimmunology
16:52 Closing Remarks

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 to become a physician and her focus on spinal cord injury rehabilitation [00:02:26]. She discussed the Kennedy Krieger Institute International Center for Spinal Cord Injury's comprehensive care approach, which includes long-term and specialized treatments for both pediatric and adult patients [00:07:00]. Dr. Sadowski concluded with insights on what keeps her motivated and her hopes for advancements in the treatment of rare neuroimmune disorders [00:13:51]. You can view the medical profile of Dr. Sadowsky here:

https://www.kennedykrieger.org/patient-care/faculty-staff/cristina-sadowsky

Born in Romania, Cristina Sadowsky, MD attended the Institute of Medicine and Pharmacy in Bucharest. She completed an internship and residency in internal medicine at Meridia Huron Hospital/Case Western Reserve University in Cleveland, OH. From there, she began a residency in physical medicine and rehabilitation at Barnes-Jewish Hospital/Washington University School of Medicine in St. Louis, MO. Immediately following the completion of her second residency, she began a fellowship in spinal cord injury medicine at Barnes-Jewish Hospital/Washington University School of Medicine. At the same time, she became a clinical instructor in the school’s Department of Neurology and later assumed an assistant professor in neurology in the Division of Rehabilitation, Spinal Cord Injury Unit. In October 2004, she moved to Baltimore, joining the Kennedy Krieger Institute as Director of the Paralysis Restoration Clinic in the International Center for Spinal Cord Injury. In March 2005, she became an assistant professor of physical medicine and rehabilitation at Johns Hopkins School of Medicine.

She frequently serves as an invited clinical scientific peer reviewer for the American Journal of Physical Medicine and Rehabilitation, Archives of Physical Medicine and Rehabilitation, Journal of Rehabilitation Research and Development, the Journal of Spinal Cord Medicine, Translational Research. She also serves as a section editor for Physical Medicine and Rehabilitation Reports.

00:00 Introduction
00:52 Meet Dr. Christina Sadowski
01:35 Dr. Sadowski's Journey to Medicine
02:41 Focus on Chronic Spinal Cord Injury Care
05:49 Research and Innovations in Spinal Cord Injury
07:32 Overview of the Kennedy Krieger Institute
14:38 Personal Insights and Self-Care
17:09 Advice for Patients and Families
20:49 Hopes for the Future of Neuroimmune Disorders
22:49 Conclusion and Acknowledgements

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 therapies, including avoiding live vaccines and the need for additional booster doses [00:04:52]. Dr. Flanagan also talked about the recommended vaccines for those with conditions like NMOSD or MOGAD, and underlined the importance of getting vaccinated to prevent severe infections [00:09:40]. He addressed common misconceptions and emphasized the role of healthcare providers in educating and supporting their patients regarding vaccinations [00:15:32].

Eoin Flanagan, MB, BCh is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He completed his medical school training at University College Dublin in Ireland in 2005. He did a medical residency in Ireland and then completed neurology residency, fellowships in neuroimmunology and a masters in clinical and translational science at Mayo Clinic (Rochester, MN). He works in the Autoimmune Neurology and Multiple Sclerosis Clinics and the Neuroimmunology Laboratory at the Mayo Clinic. His clinical expertise and research are focused on inflammatory myelopathies and their imaging patterns, myelin oligodendrocyte glycoprotein (MOG) antibody associated disorder, neuromyelitis optica spectrum disorders, autoimmune encephalitis, paraneoplastic neurologic disorders, and multiple sclerosis. He is principal investigator on an NIH RO1 grant studying MOG antibody associated disorder.

00:00 Introduction

00:47 Understanding Immunosuppressants and Vaccines

01:28 Primary Concerns with Vaccinating Immunosuppressed Patients

02:30 Recommended Vaccines for Immunosuppressed Patients

07:11 Timing and Effectiveness of Vaccinations

08:21 Measuring Vaccine Response

09:24 Addressing Missed Doses and Safety Considerations

16:41 Public Health Implications and Patient Advocacy

17:56 Advice for Vaccine-Hesitant Patients

19:06 Healthcare Providers' Role in Vaccination

20:03 Conclusion and Final Thoughts

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 highlighted the importance of finding a supportive community and suggested strategies for managing new identities and body perception [00:08:02]. Both emphasized the significance of connecting with others and seeking professional help to navigate these challenges [00:11:25].

Heather Sowalla has lived most of her life in Pennsylvania. After earning her bachelor's degree in Environmental Science and her master's degree in Environmental Studies, she returned home to her family's dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.

Meghan Beier, PhD is on faculty at Johns Hopkins and is a Health and Rehabilitation Psychologist specializing in multiple sclerosis at the Rowan Center for Behavioral Medicine. Dr. Beier completed her PhD in Clinical Psychology, Health Emphasis, from Yeshiva University then completed a postdoctoral fellowship, funded by the National MS Society, at the University of Washington where she focused on the rehabilitation, cognition, and mental health of individuals living with MS.Dr. Beier has been featured in well-known publications such as the New York Times, People Magazine, and Psychology Today. She is an internationally invited keynote speaker and also an active consultant and speaker for organizations such as National MS Society, Can Do Multiple Sclerosis, and more. Dr. Beier’s research interests include neuropsychological outcomes for individuals living with MS; cognitive rehabilitation; and behavioral approaches to wellness. She continues to remain active in research as an adjunct faculty member of Johns Hopkins University School of Medicine.Dr. Beier’s passion for improving care for people living with challenging medical conditions led her to create Find Empathy, which provides a free directory of mental health providers that specialize in working with medical populations. Find Empathy also provides continuing education for mental health professionals focused on how best to serve those living with or affected by life altering illnesses.

https://www.nationalmssociety.org/https://cando-ms.org/https://scholar.google.com/citations?user=KUPu4O4AAAAJ&hl=en

https://findempathy.com/https://findempathy.com/learn/

00:00 Introduction
01:10 Meet the Guests: Heather Sawala and Dr. Megan Beier
03:26 Heather's Diagnosis Journey
05:04 Dr. Beier's Work and Find Empathy
08:02 Discussion on Post-Diagnosis Body Dysmorphia
11:25 Coping Strategies and Personal Experiences
24:57 Advice for Newly Diagnosed Patients
33:18 Final Thoughts and Resources

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 neurological functions like movement and sensation [00:01:25]. She contrasted TSS with implanted spinal stimulators, noting their respective applications and advantages [00:02:34]. Dr. Martin shared the promising outcomes of TSS in clinical trials, emphasizing its potential for widespread clinical use, and she urged patients to inquire about it at their clinics [00:05:42]. You can read her group's recent paper here:

"Transcutaneous Spinal Cord Stimulation Enables Recovery of Walking in Children with Acute Flaccid Myelitis"

https://www.mdpi.com/2227-9067/11/9/1116

Rebecca Martin, OTR/L, OTD, CPAM received her Bachelor of Science in Occupational Therapy from Boston University in 2001 and her Occupational Therapy Doctorate from Rocky Mountain University of Allied Health Professions in 2008. Prior to joining the Kennedy Krieger Institute, Dr. Martin worked in brain injury rehabilitation in Boston, Massachusetts.

Dr. Martin joined Kennedy Krieger in 2005 as a Senior Occupational Therapist in the International Center for Spinal Cord Injury. Since 2010, Dr. Martin has been the Manager of Clinical Education and Training at ICSCI and is responsible for program development, staff training, and oversight of the clinical research program. Dr. Martin speaks nationally on topics related to Activity-Based Rehabilitation; she has taught many continuing education courses for rehabilitation professionals in the areas of neurological pathology, rehabilitation, and research. She has been the principal investigator and co-investigator for grants from the Paralyzed Veterans of America Education Foundation and Department of Defense to develop, promote, and disseminate an activity-based restorative therapy training program and curriculum.

In 2011, Dr. Martin was awarded the Leader in Spinal Cord Injury Care by the International Center for Spinal Cord Injury at Kennedy Krieger. From 2011-2016, Dr. Martin served as a Committee Chair for the annual Contemporary Trends in Spinal Cord Injury Management Symposium at Kennedy Krieger. As a consultant for SwissStim, she has helped create clinical use guidelines for training and documentation. In 2015, Dr. Martin was invited to serve on the NIH and NINDS Committee to establish Pediatric Spinal Cord Injury Common Data Elements.

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 [00:01:20]. Dr. Singh discussed how certain conditions, such as neuromyelitis optica spectrum disorder (NMOSD) and autoimmune encephalitis, and medications could impact fertility [00:03:45]. They also explored the increased risks of relapse during and after pregnancy and the importance of coordinated care between neurologists and obstetricians [00:07:10]. Dr. Singh emphasized the importance of teamwork during pregnancy to ensure optimal outcomes for both mother and child [00:21:45].

Sonia Kaur Singh, MD is a Neurologist and Assistant Professor of Neurology at Medical University of South Carolina (MUSC), Charleston who specializes in Neuroimmunology. Dr. Singh obtained her medical degree from Kasturba Medical College, Mangalore in Southern India. After graduation, she worked with dementia specialists in India studying dementia in culturally and linguistically diverse populations. She completed her neurology residency at University of Texas Health Science Center Houston (UTHealth Houston) in the Texas Medical Center. During residency, she was involved with innovative learning strategies including a structural competency curriculum and graduated with the prestigious Frank Yatsu Award for Excellence in Clinical Neurology. After residency, she completed a one-year fellowship in Multiple Sclerosis and Neuroimmunology from UTHealth Houston where she was actively involved in medical education and clinical trials. Dr. Singh has a special interest in women’s health and cognition in neuroimmune conditions.

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 grief [00:03:45]. Susan discussed the importance of self identity transformation post-diagnosis and the need for patience and self-compassion in finding new ways to move forward [00:08:34]. The value of inner strength, setting priorities, and support groups for reducing isolation and fostering compassion was emphasized [00:15:20]. The discussion concluded with a focus on post-traumatic growth, highlighting greater life appreciation and mental flexibility as key coping strategies [00:16:01].

Susan Y. Wegener, LCSW is a licensed clinical social worker who maintains a private psychotherapy practice in Austin, TX. Her clinical practice specializes in work with individuals coping with chronic medical diagnoses. She completed her undergraduate degree, in Psychology, from Skidmore College, Saratoga Springs N.Y., 1993 and her graduate degree, in Social Work from Columbia University, New York City in 1995. In addition to her private practice, she has worked in multiple medical settings throughout her career and helped to empower and support individuals from diagnosis through the adjustment process. She became a Partner in Care for the National Multiple Sclerosis Society in 2017 and is passionate about her work with individuals diagnosed with MS and various other neurological diagnoses. In her free time, she enjoys singing in a local chorus, cooking, swimming, and spending time with her family. Please see the following link to her workbook “Hold on to Hope.”

https://www.amazon.com/Hold-Hope-Overview-Strategies-Chronic/dp/1512218715

00:00 Introduction to the Podcast

00:37 Meet the Expert: Susan Wagner

01:00 Coping with a Chronic Diagnosis

01:47 The Emotional Adjustment Process

05:36 Understanding Self Identity Post-Diagnosis

08:34 Dealing with Denial

10:39 Coping Strategies for Shifting Self Identity

14:08 Finding Meaning and Purpose

14:26 Exploring the Impact of Diagnosis

15:25 Reflecting on Values and Strengths

16:06 Coping Strategies for Finding Meaning

16:29 The Role of Relationships and Support Systems

18:05 Prioritizing Self-Care and Realistic Goals

20:04 Finding Meaning in Suffering

20:15 The Concept of Post-Traumatic Growth

24:52 The Importance of Stillness and Self-Compassion

28:31 Mental Flexibility and Creative Thinking

30:02 Conclusion and Final Thoughts

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 neuroimmunology [00:02:14]. She discussed the multidisciplinary approach of her clinic at UC San Diego Health, emphasizing the importance of holistic care for patients with rare neuroimmune diseases [00:08:45]. Dr. Graves highlighted the significance of learning from rare disorders and her hope for future advancements in treatment and cures [00:16:32]. The conversation concluded with insights on maintaining well-being as a clinician and her faith in the collaborative efforts of the medical community [00:24:09]. You can view the medical profile of Dr. Graves here:

https://providers.ucsd.edu/details/32993/neurology

Jennifer Graves, MD, PhD, MAS is a Professor of Neurosciences and Vice Chair of Human Clinical Research at UCSD. She is Division Chief of Neuroimmunology and directs clinics at UCSD, the San Diego VA Hospital, and the Rady Children’s Hospital. She completed an MD and PhD in Biophysics at the University of Texas Southwestern. She trained in neurology at the University of Pennsylvania receiving the Arthur K. Asbury Award for Clinical Excellence. She completed two fellowships in Neuro-ophthalmology at the University of Pennsylvania and in Multiple Sclerosis and Clinical Research Methods at the University of California, San Francisco.

Her current research focuses on the role of biological age on neuroinflammatory disease expression and the development of wearable sensors to instrument the physical exam for 21st century neurological "vital signs." Her past work has included the study of genetic, environmental, and sex-related factors in neuroimmunological diseases and the application of visual outcome measures in these diseases. She is currently the North American Editor for the Multiple Sclerosis Journal.

00:00 Introduction and Welcome
00:59 Meet Dr. Jennifer Graves
01:35 Journey into Neuroimmunology
02:35 Clinic Overview and Services
03:31 Focus on Rare Neuroimmune Disorders
04:42 Multidisciplinary Clinic Team
06:27 Accepting New Patients
07:19 Self-Care as a Clinician
09:41 Commitment to Patients and Research
10:54 Hope for the Future
12:07 Conclusion

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]. She described how long-term misdiagnosis and numerous flares impacted her life and mental health [00:16:02]. She shared coping strategies and emphasized the importance of a supportive community and the advancements in NMO treatment [00:25:49]. Finally, Heather encouraged those newly diagnosed to seek a doctor they connect with and lean on the community for support [00:34:12].

Heather Sowalla has lived most of her life in Pennsylvania. After earning her Bachelors degree in Environmental Science and her Masters degree in Environmental Studies, she returned home to her families dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.

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 faced [00:04:42]. They talked about the emotional impact of the disease, how it changed Kim's life, and her strategies for maintaining a social life despite her condition [00:22:34]. Kim also offered advice for others dealing with NMOSD on how to stay connected and live their best life [01:19:17].

Kim Jackson-Matthews, a past Continuity Director with KCBS-FM / Jack93.1 radio station, is well known in the rare patient community for being an advocate for Neuromyelitis Optica Spectrum Disorder, NMOSD. Her passion for helping people with rare diseases and those in underrepresented areas along with her personal experience with chronic disease has leveraged her as the Diversity, Equity, Inclusion and Accessibility Liaison with the Guthy-Jackson Charitable Foundation. As a 2nd degree Black Belt in Taekwondo, she is very passionate about health and wellness. For over twenty-five years Kim has been a licensed Personal Fitness Trainer whose focus is to educate and motivate people to, “Just Keep Moving!” Kim has held the office of Co-Chair of the Physical and Mental Health Committee as a member of Delta Sigma Theta Sorority, Inc. Los Angeles Alumnae Chapter and was excited to spread the word about NMOSD during their Self-Care Summit: Seven Days of DeltaCare now on YouTube. Kim has gone to Washington, DC for Rare Disease Week on Capitol Hill with RDLA to speak to state stakeholders. She will continue to use her voice to advocate for those who can’t do so for themselves.

https://www.youtube.com/playlist?list=PLOLU7_4RDHZlPqQq42qkHaFkmwFWcTVyU

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 about the cosMOG clinical trial, detailing the mechanism and potential of rozanolixizumab, and the criteria for participation [00:04:54]. The discussion also covered the Meteoroid trial and satralizumab as a potential treatment for MOGAD, comparing its design and eligibility criteria with those of cosMOG [00:15:12]. Both trials are actively enrolling participants, with the aim of preventing disease relapses and further expanding treatment options in the future [00:20:50].

*Please note: Rozanolixizumab can now be administered in the home setting.

Michael Levy, MD, PhD is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology & Neuroinfectious Disease. He completed the MD/PhD program at Baylor College of Medicine with a focus on neuroscience. In 2009, Dr. Levy was appointed to the faculty as Assistant Professor at Johns Hopkins where he started the Neuromyelitis Optica Clinic and Research Laboratory and in 2019 he moved to the Massachusetts General Hospital and Harvard Medical School to develop the research program in neuroimmunology.

Clinically, Dr. Levy specializes in taking care of patients with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease, acute disseminated encephalomyelitis and optic neuritis. In addition to neuroimmunology clinics, Dr. Levy has a special interest in patients with superficial siderosis of the central nervous system. Dr. Levy is the principal investigator on several clinical studies and drug trials for all of these conditions.

In the laboratory, Dr. Levy’s research focuses on the development of animal models of neuromyelitis optica and transverse myelitis with the goal of tolerization as a sustainable long-term treatment.

00:00 Introduction to the Episode

01:28 Understanding MOG Antibody Disease

02:40 Current Therapies for MOGAD

04:54 Introduction to cosMOG Clinical Trial

05:35 Mechanism and Progress of cosMOG Trial

08:31 Eligibility and Status of cosMOG Trial

15:12 Introduction to Meteoroid Clinical Trial

15:34 Mechanism and Progress of Meteoroid Trial

19:31 Eligibility and Status of Meteoroid Trial

20:50 How to Participate in the Trials

21:57 Conclusion and Final Thoughts

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 the disorder, distinguishing it from other disorders like multiple sclerosis and neuromyelitis optica [00:05:24]. Dr. Levy detailed the diagnostic process, including antibody tests, MRIs, and clinical criteria [00:13:47]. The episode also explored treatment options, long-term effects, and the prognosis of the disease [00:29:30].

Michael Levy, MD, PhD is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology & Neuroinfectious Disease. He completed the MD/PhD program at Baylor College of Medicine with a focus on neuroscience. In 2009, Dr. Levy was appointed to the faculty as Assistant Professor at Johns Hopkins where he started the Neuromyelitis Optica Clinic and Research Laboratory and in 2019 he moved to the Massachusetts General Hospital and Harvard Medical School to develop the research program in neuroimmunology.

Clinically, Dr. Levy specializes in taking care of patients with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease, acute disseminated encephalomyelitis and optic neuritis. In addition to neuroimmunology clinics, Dr. Levy has a special interest in patients with superficial siderosis of the central nervous system. Dr. Levy is the principal investigator on several clinical studies and drug trials for all of these conditions.

In the laboratory, Dr. Levy’s research focuses on the development of animal models of neuromyelitis optica and transverse myelitis with the goal of tolerization as a sustainable long-term treatment.

00:00 Introduction and Guest Introduction

01:33 Understanding MOG Antibody Disease

03:09 History and Discovery of MOG Antibody Disease

06:13 Diagnostic Process for MOG Antibody Disease

09:09 Acute and Long-Term Treatment Options

14:33 Choosing the Right Treatment

16:01 Rehabilitation and Follow-Up

18:42 Long-Term Effects and Prognosis

22:19 Conclusion and Future Discussions