Uploaded December 2024 | Updated September 2026, 1 week ago
At the 2024 RNDS, Sandy Siegel introduced Dr. Doug Kerr for the 2024 RNDS keynote address. Dr. Kerr reminisced about the early days of the association, highlighting its growth, remarkable staff, and global impact [00:01:40]. Key moments and contributions of various medical professionals, particularly Dr. Douglas Kerr's efforts in advancing research and clinical care for rare neuroimmune disorders, were emphasized [00:03:30]. Dr. Kerr also shared milestones in biotechnology advancements, underscoring the importance of early diagnosis and treatment in rare neuroimmune disorders [00:10:45]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Opening Remarks and Gratitude
02:17 The Evolution of the Association
04:44 The Birth of a Center of Excellence
09:42 Introducing Dr. Douglas Kerr
10:05 Dr. Kerr's Journey and Contributions
12:25 Advancements in Rare Neuroimmune Disorders
17:44 A Breakthrough in Spinal Muscular Atrophy
19:59 Future Directions and Closing
At the 2024 RNDS, Sandy Siegel introduced Dr. Doug Kerr for the 2024 RNDS keynote address. Dr. Kerr reminisced about the early days of the association, highlighting its growth, remarkable staff, and global impact [00:01:40]. Key moments and contributions of various medical professionals, particularly Dr. Douglas Kerr's efforts in advancing research and clinical care for rare neuroimmune disorders, were emphasized [00:03:30]. Dr. Kerr also shared milestones in biotechnology advancements, underscoring the importance of early diagnosis and treatment in rare neuroimmune disorders [00:10:45]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Opening Remarks and Gratitude
02:17 The Evolution of the Association
04:44 The Birth of a Center of Excellence
09:42 Introducing Dr. Douglas Kerr
10:05 Dr. Kerr's Journey and Contributions
12:25 Advancements in Rare Neuroimmune Disorders
17:44 A Breakthrough in Spinal Muscular Atrophy
19:59 Future Directions and Closing
![2024 RNDS | Update on the Q-Cells Study
At the 2024 RNDS, Dr. Benjamin Greenberg of the University of Texas Southwestern gave an update on the current state of stem cell therapies for rare neuroimmunologic disorders, focusing particularly on transverse myelitis. Recent studies, including the Mayo Clinics research on stem cells for spinal cord injury, were reviewed, highlighting the progress and challenges faced in the field [00:01:05]. Dr. Greenberg discussed the risks and drawbacks of unregulated stem cell clinics and emphasized the importance of rigorous clinical trials and FDA approvals [00:02:42]. The presentation concluded with an update on the current FDA-approved Phase I trial using Q cells, detailing the procedures, safety measures, and future outlook [00:09:01]. 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_Greenberg.pdf
00:00 Introduction to Stem Cell Therapies
00:37 Excitement and Challenges in Stem Cell Research
01:05 Case Study: Mayo Clinics Stem Cell Research
02:42 The Reality of Stem Cell Clinics
03:52 History and Critique of Stem Cell Clinics
06:32 Scientific Approach to Stem Cell Therapy
06:53 Types of Stem Cells and Their Challenges
09:01 Preclinical Development and Testing
09:49 FDA Approval Process and Challenges
11:40 Clinical Trials and Patient Participation
14:12 Surgical Techniques and Innovations
19:00 Current Status and Future Directions
23:01 Acknowledgements and Personal Notes 2024 RNDS | Update on the Q-Cells Study](https://i.ytimg.com/vi/ZSaKJbA3TD0/mqdefault.jpg)
![2024 RNDS | Management of Bladder and Bowel Dysfunction
At the 2024 RNDS, Dr. Philippines Cabahug explained the challenges faced by individuals with spinal cord injuries, particularly focusing on bladder and bowel function [00:07:00]. She discussed how injuries affecting the spinal cord can lead to either a spastic or flaccid bladder and bowel and the repercussions of these conditions [00:04:41]. The presentation covered various management strategies, including medications, surgical options, and lifestyle adjustments to prevent complications [00:11:14]. Dr. Cabahug also emphasized the importance of regular medical checkups and working closely with urology specialists to manage these conditions effectively [00:29:12]. 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_Cabahug.pdf
00:00 Introduction and Speaker Background
00:45 Bladder and Bowel Function Overview
01:14 Survey Insights and Patient Challenges
01:47 Bladder Function and Management
04:41 Spastic vs. Flaccid Bladder
11:14 Bladder Management Techniques
23:53 Bowel Function and Management
26:38 Advanced Bowel Management Techniques
29:12 Conclusion and Final Thoughts 2024 RNDS | Management of Bladder and Bowel Dysfunction](https://i.ytimg.com/vi/ZVOjTk3n-9g/mqdefault.jpg)
![2024 ADEM Together | Community Q&A
During the 2024 ADEM Together online event, Krissy Dilger of SRNA was joined by Dr. Cindy Wang of University of Texas Southwestern Medical Center. Dr. Wang provided a comprehensive overview of acute disseminated encephalomyelitis (ADEM) diagnosis and symptoms [00:00:50]. She addressed long-term effects, emphasizing the importance of short-term response to treatment and potential complications [00:09:35]. The discussion included the impact on children versus adults, considering aspects such as visual and mobility impairments as well as cognitive issues [00:15:24]. Dr. Wang also covered pain management strategies, both medication-based and natural, alongside the importance of multidisciplinary care in improving quality of life for ADEM patients [00:25:00]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
Dr. Cynthia Wang received her medical degree from University of Texas Southwestern Medical Center in Dallas, Texas and completed a pediatrics and pediatric neurology residency at Mott Children’s Hospital, University of Michigan Health System in Ann Arbor, Michigan. Dr. Wang completed her James T. Lubin Fellowship under the mentorship of Dr. Benjamin Greenberg at The University of Texas Southwestern and Children’s Health. Her research study was a prospective, longitudinal study on acute disseminated encephalomyelitis (ADEM) to identify the clinical characteristics, treatment methods, and follow-up interventions that are associated with better and worse patient-centered outcomes.
00:00 Introduction and Welcome
00:45 Overview of Acute Disseminated Encephalomyelitis (ADEM)
02:47 Long-term Effects of ADEM
05:53 Challenges for Children vs. Adults with ADEM
08:06 Managing Pain in ADEM
10:30 Non-Medication Approaches to ADEM
14:57 Research and Future Directions in ADEM
18:41 Testing and Diagnosis of ADEM
23:47 Treatment and Recovery
29:35 Adult vs. Child ADEM
34:26 Conclusion and Final Thoughts 2024 ADEM Together | Community Q&A](https://i.ytimg.com/vi/ZgkQlMctalQ/mqdefault.jpg)
![2024 RNDS | How Do Advocacy and Awareness Organizations Support our Community?
At the 2024 RNDS, Leah Campbell shared her personal journey with aquaporin4-positive neuromyelitis optica spectrum disorder (NMOSD) and introduced the panels focus on advocacy and awareness in rare neuroimmune conditions [00:00:20]. Jacinta Behne from The Guthy-Jackson Charitable Foundation highlighted their history and patient-centered approach to advocacy [00:03:50]. Julia Lefelar from The MOG Project explained their commitment to education and support for people who are diagnosed with MOG antibody disease (MOGAD) [00:06:20]. Jasmine Patel from The Sumaira Foundation discussed the importance of global advocacy and community building for people who are diagnosed NMOSD and MOGAD [00:10:45]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction and Welcome
00:38 Leah Campbells Advocacy Journey
03:02 Panel Introductions
07:20 Defining Patient Advocacy
12:50 Impactful Initiatives and Future Plans
21:41 Closing Remarks and Future Vision 2024 RNDS | How Do Advocacy and Awareness Organizations Support our Community?](https://i.ytimg.com/vi/ZkjCcE6wbVw/mqdefault.jpg)


![1308. Parenting is Hard | Part 4
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
In the fourth part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA continued her conversation with Barbara Babcock. In this episode, Barbara, a family therapist, discussed her research of parental fatigue and limited time distribution among families of children who have been diagnosed with a rare neuroimmune disorder. She elaborated on the non-stop nature of caregiving roles and the impact of work and daily parenting responsibilities on parental exhaustion [00:05:10]. Barbara emphasized the importance of parents finding ways to cope, from getting social support to attending to their own basic needs [00:17:35]. She highlighted the significance of confidence in navigating the complexities of family life and caregiving for a child with special needs [00:21:27].
00:00 Introduction
01:29 Theme Two: I Can Only Split Myself So Many Ways
05:10 Parental Exhaustion and Coping Mechanisms
17:35 Balancing Social and Extracurricular Activities
21:27 Building Confidence as a Family
23:28 Conclusion
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 1308. Parenting is Hard | Part 4](https://i.ytimg.com/vi/_FXYjc3Gpso/mqdefault.jpg)
![2024 RNDS | Advances in Immunotherapies and Tolerance
At the 2024 RNDS, Dr. Michael Yeaman of UCLA shared an overview of the advances in immunotherapy and tolerization, focusing on the progress made in the field of neuromyelitis optica spectrum disorder (NMOSD) over the past 15 years. Key points included the significant milestones in NMOSD research, the revolution in clinical care, and the emerging technologies aimed at restoring immune tolerance [00:02:03]. Dr. Yeaman discussed the unmet needs in the field, such as the risks associated with current therapies and the need for safer treatments [00:08:12]. The presentation concluded with insights into the exciting future of antigen-specific tolerance as a cure for autoimmune diseases [00:29:39]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction and Meeting Context
00:17 Overview of Advances in Immunotherapy & Tolerization
00:48 Disclosures and Contributions
01:07 Key Points in NMOSD Research
02:03 NMOSD Revolution and Progress
04:40 Scientific Summary of NMOSD
08:12 Unmet Needs in NMOSD Treatment
11:24 Crash Course in Immune Tolerance
18:18 Restoring Immune Tolerance
20:26 Emerging Technologies in Tolerization
25:19 Recent Advances and Clinical Trials
29:39 Conclusion and Future Outlook
31:23 Closing Remarks and Resources 2024 RNDS | Advances in Immunotherapies and Tolerance](https://i.ytimg.com/vi/_KbK56pIMhA/mqdefault.jpg)
![2024 RNDS | Care for the Caregiver
At the 2024 RNDS, Jeff Harrington and Paula Hardeman shared their personal caregiving journeys and emphasized the importance of self-care [00:01:00]. Both highlighted their initial struggles, with Jeff talking about his daughters acute disseminated encephalomyelitis (ADEM) diagnosis and Paula discussing her mothers Alzheimer’s diagnosis [00:10:37]. The session included audience questions. They underscored the need for effective communication, seeking external help, and the value of family support [00:20:42]. The discussion also featured insights from the audience, including planning for future care and the benefits of utilizing various resources [00:45:50]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction to Jeff and Paula
00:19 Jeffs Caregiving Journey
04:51 Paulas Story and Caregiving Experience
07:58 Strategies for Self-Care and Support
13:12 Resources and Community Support
16:34 Personal Stories and Emotional Insights
22:25 Balancing Caregiving and Personal Life
36:55 Planning for the Future
37:37 Facing the Reality of Caregiving
38:33 Financial and Legal Preparations
41:46 Daily Life and Advocacy
44:04 Travel Challenges and Solutions
47:15 Understanding Hospice and Palliative Care
49:49 Maintaining Relationships and Self-Care
51:52 Practical Tips for Caregivers
01:00:39 The Importance of Advocacy and Communication
01:05:22 Final Thoughts and Reflections 2024 RNDS | Care for the Caregiver](https://i.ytimg.com/vi/_Q8398Ii_jE/mqdefault.jpg)
![1212. The Role of Physicians and Patients in Legislative Advocacy
In this episode of Ask the Expert, hosted by Krissy Dilger of SRNA, Dr. Shuvro Roy talked about the importance of legislative advocacy in healthcare [00:01:10]. Dr. Roy discussed how physicians can engage in legislative advocacy by sharing their practice stories and providing technical expertise [00:05:05]. He emphasized the crucial role of patients in advocacy, highlighting that their personal stories carry significant weight with legislators [00:07:45]. Dr. Roy also shared examples of successful advocacy efforts, such as telemedicine policy changes and Medicare reforms, contributing to better patient outcomes [00:15:10].
Shuvro Roy, MD is an assistant professor of Neurology at the University of Washington, specializing in Neuroimmunology. He completed his neuroimmunology and neuroinfectious disease fellowship at Johns Hopkins University. He graduated from Medical School at Ohio State University and completed his neurology residency at University of California, Los Angeles. Dr. Roy is actively engaged with a number of projects to improve access to care, healthcare inequality, and patient safety for people with MS and related conditions, with a special interest in neuromyelitis optica and MOG antibody disease. His primary research focus examines how to better leverage health systems to understand and treat neuroimmunologic disorders. He chose to work with people who have MS and rare neuroimmunologic conditions because of the opportunity to build longstanding patient-provider relationships and to help his patients thrive in the face of challenging lifelong conditions.
00:00 Introduction to the Podcast
00:36 Meet Dr. Roy: Our Expert Guest
01:05 Importance of Legislative Advocacy in Healthcare
02:54 Physicians Role in Legislative Advocacy
06:13 Patients Role in Legislative Advocacy
07:51 Examples of Successful Advocacy Efforts
11:52 Current Legislative Issues Impacting the Community
15:28 Effective Communication with Legislators
18:15 Barriers to Advocacy
20:34 The Role of Medical Research in Advocacy
23:47 Collaborating with Stakeholders
27:58 Advice for New Advocates
31:37 Conclusion and Final Thoughts 1212. The Role of Physicians and Patients in Legislative Advocacy](https://i.ytimg.com/vi/_V8IKqkS8y8/mqdefault.jpg)
