Uploaded December 2024 | Updated September 2026, 1 week ago
At the 2024 RNDS, Dr. Cristina Sadowsky discussed the nature of spasticity as an uncontrolled motor activity resulting from central nervous system lesions [00:01:34]. She explained the beneficial and disabling aspects of spasticity, emphasizing the importance of identifying triggers and appropriate treatments [00:10:20]. Various pharmacologic treatments and their potential side effects were detailed, along with non-pharmacologic interventions such as Botox injections and intrathecal baclofen [00:11:16]. Emerging treatments like cryoneurolysis and surgical options such as selective dorsal rhizotomies were also introduced as innovative approaches to managing severe cases of spasticity [00:20:10]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Sadowsky_Spasticity.pdf
00:00 Introduction and Background
00:42 Understanding Spasticity
04:12 Beneficial vs. Disabling Spasticity
05:54 Measuring Spasticity
07:19 Common Triggers of Spasticity
11:16 Treatment Options: Activity and Medications
20:10 Advanced Treatments and Interventions
23:44 Surgical Options and Conclusion
At the 2024 RNDS, Dr. Cristina Sadowsky discussed the nature of spasticity as an uncontrolled motor activity resulting from central nervous system lesions [00:01:34]. She explained the beneficial and disabling aspects of spasticity, emphasizing the importance of identifying triggers and appropriate treatments [00:10:20]. Various pharmacologic treatments and their potential side effects were detailed, along with non-pharmacologic interventions such as Botox injections and intrathecal baclofen [00:11:16]. Emerging treatments like cryoneurolysis and surgical options such as selective dorsal rhizotomies were also introduced as innovative approaches to managing severe cases of spasticity [00:20:10]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Sadowsky_Spasticity.pdf
00:00 Introduction and Background
00:42 Understanding Spasticity
04:12 Beneficial vs. Disabling Spasticity
05:54 Measuring Spasticity
07:19 Common Triggers of Spasticity
11:16 Treatment Options: Activity and Medications
20:10 Advanced Treatments and Interventions
23:44 Surgical Options and Conclusion
![1206. Voices of SRNA Volunteers | Part 2
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, titled, “Voices of SRNA Volunteers, Part 2,” Minaal Zahid and Doug Kirby joined Lydia Dubose of SRNA. Doug shared his journey with NMOSD, emphasizing the role of volunteers in providing support and education [00:01:49]. Minaal discussed her motivation to volunteer stemming from her brother’s diagnosis of NMOSD [00:02:42]. Minaal and Doug delved into their volunteer activities, including organizing events and contributing to educational resources, highlighting the impact of volunteering on both personal growth and community support [00:07:13].
Minaal Zahid is an incoming neurodevelopmental disabilities resident physician whose journey in medicine was shaped by her familys history of autism and NMOSD. She witnessed firsthand the challenges her family faced in obtaining a diagnosis for her younger brother, who struggled with NMOSD symptoms for nearly a year before diagnosis, resulting in the unfortunate loss of vision in his left eye. Assuming the role of caretaker as the eldest daughter, Minaal was inspired to pursue a career in neurology to assist families facing similar struggles with neurological disorders. This pursuit led her to SRNA where she is excited to educate the general public and her colleagues about rare neuroimmune disorders and help enact policy changes to better serve patients with neurological disabilities.
Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his masters degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife Holly for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environmental field working at two different hazardous waste disposal sites and then switched to information technology. During his career, Doug has been a developer and manager. He currently lives in Herriman, Utah where he and Holly are looking forward to retirement in a little over three years. Doug was diagnosed with NMOSD when he was 56 in 2017. His vision is fine, but he has some physical difficulties including numbness and trouble walking that he has learned to live with. Doug enjoys meeting with and learning from others who are going through similar challenges. 1206. Voices of SRNA Volunteers | Part 2](https://i.ytimg.com/vi/dOrgUoiN-gw/mqdefault.jpg)
![2024 TM Together | Community Q&A
During the 2024 TM Together online event, Krissy Dilger of SRNA was joined by Dr. Paula Barreras of Cedars-Sinai Medical Center and Dr. Hamza Coban of University of Connecticut Health Center. Dr. Barreras and Dr. Coban answered questions from the audience about transverse myelitis (TM), managing relapsing TM, diagnostic tests, and medications [00:07:15]. The doctors also delved into symptom management strategies for neuropathic pain, fatigue, and bladder and bowel dysfunction, emphasizing the importance of personalized treatment plans and ongoing care [00:23:40]. They concluded by highlighting the relevance of new research, particularly in stem cell treatments, and offered encouragement for people living with TM [00:48:05]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
Paula Barreras, MD is a board-certified neurologist with expertise in neuroimmunology. She is an assistant professor of neurology at Cedars-Sinai Medical Center in Los Angeles, CA. Dr. Barreras specializes in immune mediated conditions affecting the brain and spinal cord, including neurosarcoidosis and spinal cord disorders such as neuromyelitis optica, MOG associated disease, transverse myelitis, and their mimics.
Dr. Barreras completed her medical school at the University of the Andes, followed by a postdoctoral research fellowship in neuroimmunology at Johns Hopkins University. She completed her neurology residency and clinical neuroimmunology fellowship also at Johns Hopkins before joining the team at Cedars-Sinai Medical Center. Her research focuses on identifying predictors of final diagnosis after the initial diagnosis of myelopathy, as well as predictors of outcomes in myelitis and neurosarcoidosis.
Hamza Coban, MD is an assistant professor of neurology at University of Connecticut in Farmington, CT. He is a neurologist specializing in neuroimmunology disorders including multiple sclerosis, neuromyelitis optica spectrum disorders (NMOSD), and other rare autoimmune conditions affecting the central nervous system in adults and children. Dr. Coban received his medical degree from Hacettepe University School of Medicine in Ankara, Turkey. After medical school, he did a post-doctoral research fellowship at University of California Los Angeles and University of California San Diego, where he studied neurodegeneration and neuroinflammation in the setting of Alzheimer’s disease and HIV-associated dementia.
He completed his neurology residency at University of Connecticut in Farmington, CT, and served as Chief Resident in his last year of residency. After residency, he completed his fellowship training in neuroimmunology at University of Pennsylvania and Children’s Hospital of Philadelphia. Dr. Coban’s research focuses on the aging and transitional care of neuroinflammatory disorders from pediatrics to adulthood and adulthood to the elderly.
00:00 Introduction and Guest Introductions
01:29 Understanding Relapsing Transverse Myelitis
06:37 Recovery After Transverse Myelitis
12:07 Transverse Myelopathy vs. Transverse Myelitis
16:03 Symptom Management: Neuropathic Pain
22:55 Symptom Management: Fatigue
29:12 Symptom Management: Bowel Dysfunction
35:10 Aging with Transverse Myelitis
41:02 Current Research and Future Directions
53:28 Final Thoughts and Closing Remarks 2024 TM Together | Community Q&A](https://i.ytimg.com/vi/esjW3mJKKIg/mqdefault.jpg)




![Community Meets Clinic 302. Drs. Grace Gombolay and Varun Kannan
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 Childrens 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 Gombolays medical profile here:
https://www.choa.org/doctors/grace-gombolay
You can view Dr. Varun Kannans 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 Childrens 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 Childrens Hospital in 2023. He returned to Emory and Childrens 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 Gombolays Journey
03:37 Dr. Varun Kannans Path
05:06 Kannans Research Focus
06:36 Biomarkers and Biobank
10:22 Clinic Team and Care
13:44 Self Care and Balance
16:15 Childrens Healthcare of Atlanta
20:43 Hopeful Future Ahead
24:49 Closing Community Meets Clinic 302. Drs. Grace Gombolay and Varun Kannan](https://i.ytimg.com/vi/hUrRjRHM69s/mqdefault.jpg)
![201. Steroid Dependence
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 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
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 201. Steroid Dependence](https://i.ytimg.com/vi/hkXutCNesok/mqdefault.jpg)
![2024 RNDS | What’s my Diagnosis? Physician Panel Discussion Based on Community Panel Presentations
At the 2024 RNDS, a panel of physicians discussed the community panel presentations on their diagnostic journey. The panel collectively discussed the importance of integrating patient stories with clinical perspectives to improve diagnosis and treatment of rare neurologic disorders [00:03:15]. Dr. Carlos Pardo shared historical insights and reviewed the evolution and challenges in understanding and diagnosing transverse myelitis over the past 20 years [00:06:23]. Dr. Dean Wingerchuk highlighted the journey and breakthroughs regarding neuromyelitis optica, emphasizing the significance of biomarkers and new diagnostic criteria [00:18:47]. Dr. Leslie Benson and others delved into acute flaccid myelitis, discussing how it overlaps and differentiates from other conditions, underscoring the importance of precise diagnostic methods and long-term management [00:35:12]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Welcome and Introduction
01:13 Historical Perspective on Neurological Disorders
10:52 The Evolution of Neuromyelitis Optica
19:03 The Role of Diagnostic Testing
26:07 Acute Flaccid Myelitis: A New Challenge
37:43 The Importance of Accurate Diagnosis and Long-term Management
42:33 Advice for Patients and Families
46:01 Closing Remarks and Acknowledgements 2024 RNDS | What’s my Diagnosis? Physician Panel Discussion Based on Community Panel Presentations](https://i.ytimg.com/vi/iGsNACIp5Ds/mqdefault.jpg)

![Ask the Expert 1409. Community Spotlight | Cindy Ranii
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 Cindys 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 Ask the Expert 1409. Community Spotlight | Cindy Ranii](https://i.ytimg.com/vi/jGyRK8lTVGY/mqdefault.jpg)