Uploaded May 2024 | Updated September 2026, 1 week ago
During the 2024 NMOSD Together online event, Krissy Dilger of SRNA was joined by Dr. Elias Sotirchos of Johns Hopkins Hospital in Baltimore, Maryland. Dr. Sotirchos answered the audience’s questions about neuromyelitis optica spectrum disorder (NMOSD), exploring common symptoms like optic neuritis and myelitis, and rarer symptoms like area postrema syndrome, while distinguishing NMOSD from other diseases such as MOG antibody disease and multiple sclerosis [00:02:00].
The discussion also addressed the ongoing revisions in diagnostic criteria and the complexity faced by patients and neurologists due to overlapping symptoms and antibody statuses [00:10:45]. Additionally, it highlighted FDA-approved treatments for NMOSD, mentioning accessible therapies for people who are aquaporin-4 antibody positive and the challenges faced by people who are seronegative [00:22:15]. The talk concluded by examining the future prospects for NMOSD, focusing on the potential for immune education and myelin repair therapies [00:34:10]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
Elias Sotirchos, MD is a neurologist at Johns Hopkins Hospital in Baltimore, Maryland. He specializes in the diagnosis, management, and treatment of neuroimmunological disorders that involve the central nervous system, including multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), and myelin oligodendrocyte glycoprotein-immunoglobulin G (MOG-IgG)-associated disorder (MOGAD). His research focuses on developing and validating novel imaging and blood-based biomarkers of these conditions, and clinical trials of experimental therapeutic agents.
00:00 Introduction to NMOSD Diagnosis
01:23 Common Presentations of NMOSD
02:42 Distinguishing NMOSD from MOG Antibody Disease
04:55 FDA-Approved Treatments for NMOSD
07:29 Challenges with Seronegative NMOSD
10:03 Antibody Development and Immune Deficiency
16:37 Impact of Infections on NMOSD
21:37 Global Access to NMOSD Treatments
24:22 Diagnosing Sarcoidosis and NMOSD
26:46 Unusual Symptoms and Prodromal Phase in NMOSD
37:46 Choosing the Right Treatment for NMOSD
44:35 Future Directions: Cure and Repair for NMOSD
48:58 Conclusion and Final Thoughts
During the 2024 NMOSD Together online event, Krissy Dilger of SRNA was joined by Dr. Elias Sotirchos of Johns Hopkins Hospital in Baltimore, Maryland. Dr. Sotirchos answered the audience’s questions about neuromyelitis optica spectrum disorder (NMOSD), exploring common symptoms like optic neuritis and myelitis, and rarer symptoms like area postrema syndrome, while distinguishing NMOSD from other diseases such as MOG antibody disease and multiple sclerosis [00:02:00].
The discussion also addressed the ongoing revisions in diagnostic criteria and the complexity faced by patients and neurologists due to overlapping symptoms and antibody statuses [00:10:45]. Additionally, it highlighted FDA-approved treatments for NMOSD, mentioning accessible therapies for people who are aquaporin-4 antibody positive and the challenges faced by people who are seronegative [00:22:15]. The talk concluded by examining the future prospects for NMOSD, focusing on the potential for immune education and myelin repair therapies [00:34:10]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
Elias Sotirchos, MD is a neurologist at Johns Hopkins Hospital in Baltimore, Maryland. He specializes in the diagnosis, management, and treatment of neuroimmunological disorders that involve the central nervous system, including multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), and myelin oligodendrocyte glycoprotein-immunoglobulin G (MOG-IgG)-associated disorder (MOGAD). His research focuses on developing and validating novel imaging and blood-based biomarkers of these conditions, and clinical trials of experimental therapeutic agents.
00:00 Introduction to NMOSD Diagnosis
01:23 Common Presentations of NMOSD
02:42 Distinguishing NMOSD from MOG Antibody Disease
04:55 FDA-Approved Treatments for NMOSD
07:29 Challenges with Seronegative NMOSD
10:03 Antibody Development and Immune Deficiency
16:37 Impact of Infections on NMOSD
21:37 Global Access to NMOSD Treatments
24:22 Diagnosing Sarcoidosis and NMOSD
26:46 Unusual Symptoms and Prodromal Phase in NMOSD
37:46 Choosing the Right Treatment for NMOSD
44:35 Future Directions: Cure and Repair for NMOSD
48:58 Conclusion and Final Thoughts

![1208. MOGcast | Understanding Cortical Encephalitis
This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “MOGcast 2: Understanding Cortical Encephalitis.” Dr. Eoin Flanagan and Dr. Cristina Valencia Sanchez joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA to discuss cortical encephalitis, its symptoms, and the connection to MOG antibody disease (MOGAD) [00:04:21]. Audience members asked about the distinction between ADEM and cerebral cortical encephalitis, their treatments, diagnostic methods, and long-term impacts [00:35:34]. Dr. Flanagan and Dr. Sanchez agreed that the preventive treatment approach remains similar regardless of the MOGAD phenotype [00:40:36]. The discussion touched on recent studies on the diagnostic utility of MOG antibody testing in cerebrospinal fluid, and ongoing research on treatments, including clinical trials for developing FDA-approved medications for MOGAD [00:43:05]. Dr. Flanagan and Dr. Sanchez addressed community questions on fulminant cortical involvement cases [00:50:00], the long-term effects of Rituximab treatment [00:51:23], anxiety attacks and mood swings in ADEM [00:53:34], and treatment decisions based on antibody levels [00:54:49].
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.
Cristina Valencia Sanchez, MD, PhD is an Assistant Professor of Neurology and Senior Associate Consultant in the Department of Neurology at the Mayo Clinic (Phoenix, AZ). She completed her medical school training and PhD in Neuroscience at the Universidad Complutense de Madrid. She did a Neurology residency in the Hospital Universitario Clinico San Carlos and then completed Neurology residency and fellowships in ARZ Multiple Sclerosis and RST Autoimmune Neurology at the Mayo School of Graduate Medical Education, Mayo Clinic College of Medicine, in Arizona and Minnesota.
The research interests of Dr. Valencia Sanchez focus on autoimmune disorders involving the central nervous system. These include neuromyelitis optica spectrum disorders, myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), autoimmune encephalitis, and paraneoplastic neurological syndromes. She is particularly interested in the neurological complications of immune checkpoint inhibitor cancer immunotherapy. The clinical trials that she leads at Mayo Clinic in Arizona are among the first studies that may lead to approval of new targeted therapies for MOGAD and autoimmune encephalitis. Additionally, Dr. Valencia Sanchez’s clinical research allows for increased recognition of autoimmune neurological disorders. Also, her work is helping to avoid misdiagnosing autoimmune encephalitis in the clinical setting. Her research leads to earlier diagnosis and appropriate treatment to ultimately improve patient outcomes. 1208. MOGcast | Understanding Cortical Encephalitis](https://i.ytimg.com/vi/Y_AIf6s14Bc/mqdefault.jpg)
![Ask the Expert 1408. Open Q&A on Transverse Myelitis (TM)
Krissy Dilger of SRNA welcomed University of Washington neuroimmunologist Dr. Shuvro Roy for an open Q&A on transverse myelitis (TM). Dr. Roy explained how TM can be both a presentation and a diagnosis, with “idiopathic TM” used when extensive testing finds no underlying cause, and noted that recurrence should prompt reevaluation for conditions like NMOSD, MOGAD, or neurosarcoidosis and consideration of preventive immunotherapy [00:06:16]. He addressed audience questions about lifestyle and rehabilitation topics including diet, metabolic health, exercise, sleep issues, and safe considerations around CBD or THC-containing gummies, and reviewed approaches to chronic pain, spasticity, physical therapy timelines, and spinal cord stimulation (including ArcX) [00:13:20]. Dr. Roy also discussed the current status of peptides and stem cells, highlighted emerging cell-based therapies like CAR-T, and answered a case question about a high MOG antibody titer and its diagnostic implications [00:24:53].
Shuvro Roy, MD is an Assistant Professor of Neurology at the University of Washington, specializing in neuroimmunology, with a specific focus on multiple sclerosis (MS) and related neuroimmunologic disorders. He is Co-Director of the UW SRNA Center of Excellence for Rare Neuroimmune disorders. He is also a core teaching faculty member for the UW Medicine Multiple Sclerosis Center’s fellowship program, contributing to clinical education and research initiatives like the ECHO MS program in collaboration with the National MS Society.
Dr. Roy is actively engaged in projects aimed at improving access to care, addressing healthcare disparities, and enhancing patient safety for individuals living with MS and related conditions. He has co-authored recent research articles in medical journals on a variety of topics, including studies on stiff person syndrome, encephalomyelitis, MOG-antibody disorder, and multiple sclerosis treatment protocols. Dr. Roy is dedicated to helping his patients thrive amid challenging, lifelong neurological conditions.
00:00:00 Welcome and Introductions
00:01:24 What Is Transverse Myelitis
00:03:30 Common Causes and Mechanisms
00:06:16 Diagnosis Versus Presentation
00:10:39 Monophasic or Recurrent
00:13:20 Diet Do’s and Don’ts
00:17:25 Aging and Long-Term Health
00:24:53 Peptides and Stem Cells
00:33:07 Fatigue Sleep and CBD or THC-containing gummies
00:37:58 Chronic Pain Options
00:43:55 Physical Therapy Recovery
00:47:56 Spinal Cord Stimulation ArcX
00:51:46 Stopping Pregabalin Safely
00:52:59 Trials and Rehab at Any Age
00:56:00 MOG Titer and Diagnosis
01:00:02 Closing Ask the Expert 1408. Open Q&A on Transverse Myelitis (TM)](https://i.ytimg.com/vi/ZEm_nDbAhf8/mqdefault.jpg)
![2024 RNDS | Keynote
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 Kerrs 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. Kerrs 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 | Keynote](https://i.ytimg.com/vi/ZJ7Nf1Rke-M/mqdefault.jpg)
![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)