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