Uploaded April 2024 | Updated September 2026, 1 week ago
During the 2024 Stronger Together online event, a panel shared valuable tips and tricks for participating in fundraisers and charity walks in support of rare neuroimmune diseases. This session included a Q&A with some of our Walk-Run-N-Roll hosts to get you started and involved in making a difference.
During the 2024 Stronger Together online event, a panel shared valuable tips and tricks for participating in fundraisers and charity walks in support of rare neuroimmune diseases. This session included a Q&A with some of our Walk-Run-N-Roll hosts to get you started and involved in making a difference.



![1203. Community Spotlight | Rick Telander
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Rick Telander joined Dr. GG deFiebre of SRNA to talk about his journey with transverse myelitis (TM). Rick shared about his diagnostic process [00:08:05], the testing that took place, and the treatment and rehabilitation that he received [00:09:25]. He emphasized the importance of early diagnosis, research for better treatments, and support from organizations like SRNA [00:25:02]. Rick also discussed ongoing symptoms, his experience of living with TM, and the childrens book of poetry that he published [00:26:11].
Rick Telander is the Senior Sports Columnist for the Chicago Sun-Times. He is the author of ten books and was previously a senior writer for Sports Illustrated and ESPN, the Magazine. An original member of “The Sportswriters on TV” television show, Rick has been named Illinois Sportswriter of the Year nine times, and his work has been collected in over a dozen anthologies. He has been awarded the Sigma Delta Chi Award by the Society of Professional Journalists and the Dan Jenkins Lifetime Medal for Excellence in Sportswriting from the University of Texas. In 2021 he was inducted into the National Sportswriters Hall of Fame in Winston-Salem, North Carolina. Rick’s book, Sweet Dreams: Poems and Paintings for the Child Abed is available online:
https://www.skyhorsepublishing.com/9781510778337/sweet-dreams/ 1203. Community Spotlight | Rick Telander](https://i.ytimg.com/vi/NFk_-PyV5Hk/mqdefault.jpg)
![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, which has been designated as a Center of Excellence in Rare Neuroimmune Disorders. He outlined research including a
stem cell program and immune-remodeling therapies for NMO aimed at reducing long-term immunosuppression [05:49]. 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 Greenbergs 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 Community Meets Clinic 303. Dr. Benjamin Greenberg](https://i.ytimg.com/vi/NMl06hvkRHc/mqdefault.jpg)

![1310. Prevention and Treatment of Skin Breakdown
Krissy Dilger of the Siegel Rare Neuroimmune Association (SRNA) was joined by experts Janet Dean, MS, RN, CRRN, CRNP and Florence Hanssen, RN to discuss skin health and the prevention of skin breakdown. The conversation covered the structure of the skin and how paralysis affects skin health [00:01:48]. Key topics included the role of daily skin checks, moisture management, and the importance of pressure relief [00:11:48]. They also reviewed how nutrition, rehabilitation, and technology can aid in the prevention and treatment of skin breakdown [00:17:51]. Lastly, the episode covered the signs of serious skin issues and when to seek medical attention [00:50:18].
Janet Dean, MS, RN, CRRN, CRNP attended nursing school at the University of Michigan, completing a master’s degree in parent-child nursing in 1979. She is a board-certified Pediatric Nurse Practitioner and is also a Certified Rehabilitation Registered Nurse. She has over 30 years of experience in the specialty of pediatric rehabilitation. Prior to becoming a nurse practitioner, Ms. Dean enjoyed 10 years as a staff nurse on a pediatric rehabilitation unit caring for children with physical and developmental disability. As a nurse practitioner for the International Center for Spinal Cord Injury, she specialized in the prevention and treatment of the common health consequences of pediatric spinal cord injury. The focus of her practice is on health promotion and health maintenance.
Florence Hanssen, RN is a nurse coordinator at the Kennedy Krieger Institute’s International Center for Spinal Cord Injury. She obtained her licensure in 1993, and her bachelor’s in nursing science from Ohio University in 2014. Her primary interests are in wound care and the continuous outpatient healthcare for those living with spinal cord injury/ disease. She earned her wound care nurse certification in 2023.
00:00:00 Introduction
00:00:17 Meet the Experts
00:01:48 Understanding Skin Structure and Function
00:03:59 What is Skin Breakdown?
00:05:49 Impact of Paralysis on Skin Health
00:08:15 Causes of Skin Breakdown
00:11:48 Preventing Skin Breakdown
00:14:00 Mechanical Injuries and Skin Health
00:16:21 Hygiene Practices for Skin Health
00:17:51 Nutrition and Skin Health
00:20:17 Rehabilitation and Skin Health
00:23:15 Preventing Pressure Ulcers
00:28:58 Managing Muscle Spasms
00:31:28 Identifying and Treating Minor Skin Breakdown
00:34:14 Understanding and Treating Minor Skin Irritations
00:36:24 Identifying Pressure Points and Vulnerable Areas
00:40:17 Managing Scrapes and Tears During Transfers
00:43:21 Preventing Skin Breakdown Under Braces
00:47:20 Addressing Skin Breakdown in Perineal Areas
00:50:18 Recognizing and Treating Serious Skin Breakdown
01:03:46 The Role of Technology and Resources in Skin Care
01:06:32 Final Thoughts and Advice 1310. Prevention and Treatment of Skin Breakdown](https://i.ytimg.com/vi/Nc0olVcowIg/mqdefault.jpg)
![2024 RNDS | Clinical Analysis of Children Presenting with ADEM with or without MOG-IgG
At the 2024 RNDS, Dr. Linda Nguyen discussed the characteristics and outcomes of children with acute disseminated encephalomyelitis (ADEM), focusing on those with and without the MOG antibody [00:00:10]. She highlighted the clinical features, including vision changes and intracranial pressure differences, as well as MRI and spinal fluid findings [00:01:18]. The study included patients from the Childrens Health in Dallas between 2017 and 2024, analyzing differences in age of onset, race, and hospitalization outcomes [00:02:58]. Dr. Nguyen emphasized the importance of early OCT testing and managing increased intracranial pressure in MOG-positive ADEM patients [00:13:46]. Concluding, she answered questions form the audience [00:16:00]. 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:
https://files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Nguyen.pdf
00:00 Introduction to ADEM and MOG Antibody
01:18 Study Objectives and Methodology
02:58 Patient Demographics and Initial Findings
04:15 Clinical and Paraclinical Features
07:29 MRI and Cerebral Spinal Fluid Analysis
09:00 Hospital Course and Treatments
10:42 Long-term Outcomes and Follow-up
13:46 Summary and Conclusions
16:00 Q&A Session 2024 RNDS | Clinical Analysis of Children Presenting with ADEM with or without MOG-IgG](https://i.ytimg.com/vi/O4i_x1s4o88/mqdefault.jpg)
![501. Transitioning from Pediatric to Adult Care with NMOSD
For this “ABCs of NMOSD” episode titled, “Transitioning from Pediatric to Adult Care with NMOSD,” Dr. Jonathan Galli joined Krissy Dilger of SRNA. Dr. Galli provided insights into the disorder and its presentation across age groups, emphasizing the importance of aggressive treatment [00:01:35]. He highlighted differences in treatment approaches and medication availability between pediatric and adult populations [00:05:54]. The discussion also explored the transition process, including timelines, support systems, and considerations for patients and families, aiming to ensure a smooth shift in care [00:10:45].
Dr. Galli received his medical degree from the University of Vermont College of Medicine in Burlington, VT, and completed his neurology residency at The University of Utah in Salt Lake City, UT, where he worked with Fellowship mentor, Dr. Clardy. As part of his fellowship training, he conducted research to look for biomarkers in individuals with NMOSD. The research investigated whether individuals have aquaporin¬-4 (AQP¬4) autoantibodies prior to their symptom onset of NMOSD, and also looked for other inflammatory biomarkers. He hopes the study will help us to understand how biomarkers occur over the course of the disorder, which will hopefully help identify predictors of disease development, and ultimately therapeutic targets. 501. Transitioning from Pediatric to Adult Care with NMOSD](https://i.ytimg.com/vi/O7RltAoMPh8/mqdefault.jpg)
![103. Dr. Jennifer Graves
The Community Meets Clinic podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Jennifer Graves from UC San Diego Health. Dr. Graves shared her journey into neurology and neuroimmunology [00:02:14]. She discussed the multidisciplinary approach of her clinic at UC San Diego Health, emphasizing the importance of holistic care for patients with rare neuroimmune diseases [00:08:45]. Dr. Graves highlighted the significance of learning from rare disorders and her hope for future advancements in treatment and cures [00:16:32]. The conversation concluded with insights on maintaining well-being as a clinician and her faith in the collaborative efforts of the medical community [00:24:09]. You can view the medical profile of Dr. Graves here:
https://providers.ucsd.edu/details/32993/neurology
Jennifer Graves, MD, PhD, MAS is a Professor of Neurosciences and Vice Chair of Human Clinical Research at UCSD. She is Division Chief of Neuroimmunology and directs clinics at UCSD, the San Diego VA Hospital, and the Rady Children’s Hospital. She completed an MD and PhD in Biophysics at the University of Texas Southwestern. She trained in neurology at the University of Pennsylvania receiving the Arthur K. Asbury Award for Clinical Excellence. She completed two fellowships in Neuro-ophthalmology at the University of Pennsylvania and in Multiple Sclerosis and Clinical Research Methods at the University of California, San Francisco. Her current research focuses on the role of biological age on neuroinflammatory disease expression and the development of wearable sensors to instrument the physical exam for 21st century neurological vital signs. Her past work has included the study of genetic, environmental, and sex-related factors in neuroimmunological diseases and the application of visual outcome measures in these diseases. She is currently the North American Editor for the Multiple Sclerosis Journal.
00:00 Introduction and Welcome
00:59 Meet Dr. Jennifer Graves
01:35 Journey into Neuroimmunology
02:35 Clinic Overview and Services
03:31 Focus on Rare Neuroimmune Disorders
04:42 Multidisciplinary Clinic Team
06:27 Accepting New Patients
07:19 Self-Care as a Clinician
09:41 Commitment to Patients and Research
10:54 Hope for the Future
12:07 Conclusion 103. Dr. Jennifer Graves](https://i.ytimg.com/vi/OSRt19RtxsQ/mqdefault.jpg)
