Uploaded February 2026 | Updated September 2026, 1 week ago
Una actualización sobre terapias emergentes, estudios clínicos en curso y lo que significan para el futuro del tratamiento de trastornos neuroinmunes raros. Se explica cómo funcionan los ensayos y qué considerar antes de participar.
María Isabel Reyes Mantilla, MD | Hospital Simón Bolívar, Colombia
Una actualización sobre terapias emergentes, estudios clínicos en curso y lo que significan para el futuro del tratamiento de trastornos neuroinmunes raros. Se explica cómo funcionan los ensayos y qué considerar antes de participar.
María Isabel Reyes Mantilla, MD | Hospital Simón Bolívar, Colombia

![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)

![2024 RNDS | Plasma Exchange for Acute Inflammatory Demyelination: How We Got Here and Where to Next?
At the 2024 RNDS, Dr. Ben Greenberg provided context on the history and evolution of the Siegel Rare Neuroimmune Association (SRNA) celebrating its 30th anniversary, with a special mention of Brian Weinshenkers pioneering work on plasmapheresis 25 years ago [00:00:47]. Dr. Brian Weinshenker then shared the results and impact of his research on plasma exchange for treating acute demyelinating diseases, including a significant study from the late 1990s [00:07:26]. He discussed the challenges of implementing this treatment and compares it with other approaches, emphasizing the need for further research and careful trial design [00:14:03]. The video concluded with insights into future directions and emerging treatments to enhance the management of these diseases [00:20:30]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction and Context
00:39 Personal Story: Early Days of Plasmapheresis
02:45 Brian Weinshenkers Introduction
04:04 Historical Background and Early Research
07:26 Breakthroughs in Plasma Exchange
14:04 Clinical Trials and Results
19:45 Media Coverage and Public Reaction
24:20 Comparative Studies and Ongoing Research
32:00 Future Directions and Conclusion 2024 RNDS | Plasma Exchange for Acute Inflammatory Demyelination: How We Got Here and Where to Next?](https://i.ytimg.com/vi/_uhlkK_8xvA/mqdefault.jpg)
![2024 RNDS | Rare Neuroimmune Disorders: Diagnostic Criteria
At the 2024 RNDS, Dr. Shruti Mahale, a 4th year medical student at UT Southwestern, presented a project on patients with rare neuroimmune disorders and emphasized the challenges in diagnosing these conditions due to overlapping symptoms with other neuroimmune diseases [00:03:12]. The study involved a questionnaire to assess patients understanding of their condition, revealing that individuals with idiopathic conditions scored lower on knowledge tests compared to those with better-characterized diseases [00:10:45]. It was noted that high health literacy and educational levels among respondents might not represent the broader population, suggesting the need for targeted educational resources [00:12:24]. The discussion with Dr. Kyle Blackburn also covered the evolution of diagnostic criteria for conditions like multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), and MOG antibody disease (MOGAD), stressing the importance of regular updates to improve early diagnosis and treatment [00:14:07]. 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_Blackburn.pdf
00:00 Introduction and Speaker Background
00:28 Overview of Rare Neuroimmune Disorders
01:41 Challenges in Diagnosing Neuroimmune Disorders
03:20 Study on Patient Understanding of Their Condition
03:30 Study Methodology and Demographics
04:54 Study Results and Conclusions
07:23 Importance of Diagnostic Criteria
09:11 Evolution of Multiple Sclerosis Criteria
10:46 Historical Perspective on Neuromyelitis Optica
14:07 Discovery and Impact of Aquaporin-4 Antibody
16:51 MOG Antibody Disease: A New Entity
21:31 Acute Flaccid Myelitis and Need for Updated Criteria
23:37 Conclusion and Final Thoughts 2024 RNDS | Rare Neuroimmune Disorders: Diagnostic Criteria](https://i.ytimg.com/vi/aS-Wr3eZSiw/mqdefault.jpg)
![2024 RNDS | Management of Visual Symptoms
At the 2024 RNDS, Dr. Peter Sguigna and Dr. Kory S. Cummings discussed the prevalence of visual symptoms in various rare neuroimmune disorders [00:01:20]. Emphasis was given to the pathophysiology and recovery phases of optic neuritis, detailing inflammation and the roles of remyelination and neuroplasticity [00:10:22]. Dr. Cummings explained her approach to patient care, particularly in the context of low vision, stressing the importance of personalized strategies [00:14:03]. The session concluded with questions from the audience about segment addressing photopsia, managing blindness with technology, and mobility aids for partial vision loss [00:29:39]. 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_Sguigna.pdf
00:00 Introduction and Personal Story
02:23 Understanding Visual Symptoms
04:55 Optic Neuritis: Causes and Recovery
06:56 Case Studies and Diagnostic Challenges
09:18 Management of Visual Symptoms
14:03 Low Vision Specialist Insights
18:55 Chronic Phase and Pain Management
27:19 Assistive Technologies and Resources
29:39 Audience Q&A 2024 RNDS | Management of Visual Symptoms](https://i.ytimg.com/vi/aVFN7miJHlI/mqdefault.jpg)
![2024 RNDS | Management of Neuropathic Pain: Medical and Surgical Options
At the 2024 RNDS, Dr. Paula Barreras Cortes and Dr. Michael Levy explained neuropathic pain and how it differs from nociceptive pain [00:00:10]. They described the various sensations associated with neuropathic pain, such as burning, pins and needles, and hyperalgesia [00:05:22]. The presentation also covered the prevalence of neuropathic pain, its impact on quality of life, and common treatment options [00:11:40]. Lastly, they answered audience questions regarding treatments like transcranial magnetic stimulation and cognitive behavior therapy [00:21:40]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction to Neuropathic Pain
00:25 Types and Causes of Neuropathic Pain
01:30 Symptoms and Sensations of Neuropathic Pain
03:09 Affected Areas and Frequency
05:53 Impact on Quality of Life
06:43 Mechanisms Behind Neuropathic Pain
14:33 Treatment Options and Medications
21:40 Alternative Therapies and Patient Questions 2024 RNDS | Management of Neuropathic Pain: Medical and Surgical Options](https://i.ytimg.com/vi/a_dlAAJqufs/mqdefault.jpg)
