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