Uploaded December 2024 | Updated September 2026, 1 week ago
At the 2024 RNDS, this panel of community members discussed the benefits of setting boundaries while travelling and with colleagues, family members, and friends [00:00:10]. Rebecca Salky shared her journey on learning to say "no" and prioritizing her rest [00:01:12]. Philip Rive highlighted the challenges of accepting limited capacities and focusing on quality over quantity [00:03:24]. Leah Campbell emphasized the importance of time management and clear communication about invisible disabilities [00:06:45]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction to Community Perspectives
00:24 The Importance of Setting Boundaries
01:00 Personal Experiences with Boundaries
03:13 Invisible Disabilities and Communication Challenges
07:10 Navigating Work with Health Conditions
11:56 Adapting to Changes and Finding Balance
16:34 Travel Challenges and Solutions
23:18 Living Life to the Fullest Despite Limitations
25:18 Conclusion and Final Thoughts
At the 2024 RNDS, this panel of community members discussed the benefits of setting boundaries while travelling and with colleagues, family members, and friends [00:00:10]. Rebecca Salky shared her journey on learning to say "no" and prioritizing her rest [00:01:12]. Philip Rive highlighted the challenges of accepting limited capacities and focusing on quality over quantity [00:03:24]. Leah Campbell emphasized the importance of time management and clear communication about invisible disabilities [00:06:45]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction to Community Perspectives
00:24 The Importance of Setting Boundaries
01:00 Personal Experiences with Boundaries
03:13 Invisible Disabilities and Communication Challenges
07:10 Navigating Work with Health Conditions
11:56 Adapting to Changes and Finding Balance
16:34 Travel Challenges and Solutions
23:18 Living Life to the Fullest Despite Limitations
25:18 Conclusion and Final Thoughts




![2024 RNDS | A Conversation: How Do I Identify a Relapse?
At the 2024 RNDS, Rebecca Salky, RN shared her journey of living with MOG antibody disease (MOGAD) from childhood to adulthood and the numerous relapses she experienced [00:00:00]. Dr. Cynthia Wang discussed the complexities of diagnosing and treating relapses, using a fire analogy to illustrate her points [00:02:34]. Audience members shared their personal experiences and challenges with managing symptoms, emphasizing the need for better communication and support among doctors [00:10:15]. Rebecca and Dr. Wang provided practical tips for patients on how to handle relapses and pseudo-relapses, and the importance of seeking comprehensive care [00:18:59]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction and Personal Story
00:43 Understanding Relapses: Dr. Wangs Perspective
01:25 Fire Analogy: Explaining Relapse and Treatment
03:32 Personalizing Treatment and Recognizing Symptoms
05:59 Challenges in Diagnosis and Treatment
10:15 Patient Experiences and Questions
16:59 Community Support and Future Improvements
18:59 Emergency Strategies and Final Advice 2024 RNDS | A Conversation: How Do I Identify a Relapse?](https://i.ytimg.com/vi/HJADluTdy1E/mqdefault.jpg)
![1302. Pelvic Floor Therapy for Bladder and Bowel Management
Krissy Dilger of SRNA moderated this Ask the Expert episode, “Pelvic Floor Therapy for Bladder and Bowel Management,” featuring Jessica Ekberg, a certified pelvic floor therapist. Jessica explained the various conditions treated by pelvic floor therapy, emphasizing the importance of posture and breathing [00:01:05]. She discussed how pelvic floor therapy is adapted for individuals with rare neuroimmune disorders [00:04:59]. The discussion included both physical exercises and emotional work integral to the therapy [00:07:42]. Practical tips for seeking pelvic floor therapy and insurance considerations were also covered [00:10:42]. The episode concluded with encouragement to explore this underutilized service [00:19:23].
00:00 Introduction
02:03 Understanding Pelvic Floor Therapy
04:59 Pelvic Floor Therapy for Rare Neuroimmune Disorders
07:42 The Emotional and Mental Aspects of Pelvic Floor Therapy
10:42 Practical Insights and Patient Experiences
19:23 Getting Started with Pelvic Floor Therapy
27:38 Conclusion
Jessica Ekberg, OTR/L is a business owner, avid runner, former pants peer, prolapse owner, postpartum pain sufferer, mom of two, and certified pelvic floor therapist. Jessica is extremely passionate about helping men and women be the best version of themselves they can. Her goal is to bring Pelvic Floor Health discussions to the forefront of what she does, to help dispel myths and educate about facts. The lack of information and effective treatment in the community can leave people suffering in silence. Now that she has been working in pelvic health for almost five years, she realizes just how critical pelvic health is to all of us. She started her pelvic health journey after experiencing “a lot of problems” when returning to running post baby.
Jessica’s advice is to stop ignoring or putting off taking care of yourself. The core makes up the foundation of the body and if it is not functioning properly, it can impact several systems within the body. Some of the problems that clients present with are incontinence, hernias, pelvic pain including hips/back/genital/rectal/tailbone, respiratory difficulties, heavy/painful periods, menopause, endometriosis, pre/during/postpartum care, constipation, and sexual (including erectile) dysfunction. Jessica’s approach involves assessing the whole body, putting the puzzle together in order to determine the driver of the dysfunction and then developing a treatment plan to solve the problem. Her goal is to help clients return to doing all of the things they love, as quickly and safely as possible. 1302. Pelvic Floor Therapy for Bladder and Bowel Management](https://i.ytimg.com/vi/HgN1enJqJ2E/mqdefault.jpg)
![ABCs of NMOSD 702. CAR-T in NMOSD
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, key risks such as infection, cytokine release syndrome and ICANS, 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.
00:00 Welcome and Guests
01:37 CAR-T Explained Simply
03:27 Immune Reset vs Suppression
04:37 Why Target aquaporin-4-positive NMOSD
06:05 One-Time Remission Goal
07:02 Trial Overview and Patient Journey
09:10 Eligibility and Medication Rules
11:20 Conditioning Chemo Purpose
13:02 Safety Risks and Monitoring
16:30 Why Criteria Are Strict
20:24 How to Join the Study
22:58 Future Questions and Wrap-Up ABCs of NMOSD 702. CAR-T in NMOSD](https://i.ytimg.com/vi/HlAlJl97NQ0/mqdefault.jpg)



![1312. Parenting is Hard | Part 6
In part six of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock, a family therapist from the UKs National Health Service, to discuss the role of siblings in families with a child diagnosed with a rare neuroimmune disorder. Barbara shared findings from her research on how siblings provide crucial support to parents and the positive impacts this has on family dynamics [00:04:31]. They explored the concept of parentification and the importance of assigning age-appropriate tasks to siblings [00:25:10]. Barbara also provided advice on fostering healthy sibling relationships and the significance of open communication [00:35:34].
At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit
Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdoms National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at Kings College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk
00:00 Introduction
00:28 Meet Barbara Babcock
02:08 Theme Four: Support from Siblings
04:31 Siblings Characteristics and Their Impact
06:57 Voluntary Help from Siblings
25:10 Parentification: Understanding the Concept
36:34 Fostering Healthy Sibling Relationships
39:20 Conclusion and Final Thoughts 1312. Parenting is Hard | Part 6](https://i.ytimg.com/vi/Ixzhe0MXZTQ/mqdefault.jpg)