Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)

Community Meets Clinic 303. Dr. Benjamin Greenberg

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

Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)

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

Ask the Expert | Research Edition 1406. Q Study Updates | Expanded Inclusion Criteria & What’s Next

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

Pregúntele al Experto 1405. Rehabilitación y Recuperación en Trastornos Neuroinmunes Poco Frecuentes

En este episodio de “Pregúntele al Experto” de SRNA, moderado por Jesús Loreto, la Dra. Glendaliz Bosques explica por qué la rehabilitación es esencial en la recuperación de trastornos neuroinmunes poco frecuentes. La doctora enfatiza que el proceso debe iniciarse lo antes posible —incluso antes de contar con un diagnóstico definitivo— para prevenir complicaciones y optimizar la función física. Asimismo, se detalla cómo se evalúan la discapacidad y el potencial de recuperación mediante la historia clínica, el examen neurológico y la revisión de estudios médicos. La Dra. Bosques señala el valor fundamental de un equipo multidisciplinario (que incluye neurología, fisiatría, terapias física, ocupacional y del habla, salud mental y apoyo social) y explica cómo establecer metas realistas centradas en la participación y los roles sociales del paciente. La Dra. Glendaliz Bosques es una fisiatra certificada por la junta y 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 rehabilitar 04:08,Cuándo empezar la terapia 05:55,Monofásico vs. recurrente 10:39,Evaluación y pronóstico 13:36,Equipo multidisciplinario 17:07,Metas realistas 18:07,Terapias clave 20:12,Rehabilitación pediátrica 23:40,Manejo del dolor 26:12,Control de espasticidad 31:58,Fatiga y energía 37:14,Salud mental y motivación 40:00,Rol de la familia y cuidadores 46:15,Esperanza y tecnología

ABCs of NMOSD 701. University of Rochester NMO-Health Index Study

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