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.