Uploaded April 2026 | Updated September 2026, 1 week ago
In this SRNA "Ask the Expert" episode moderated by Krissy Dilger, Dr. John Chen of the Mayo Clinic answered audience questions about MOG antibody disease (MOGAD). He discussed diagnosis and the importance of titers and live cell-based assays given possible false positives [00:02:42]. Dr. Chen reviewed acute management with early high-dose steroids, prolonged tapers, and escalation to plasma exchange for severe or steroid-refractory attacks, as well as evolving long-term options including IVIG/subcutaneous IG and IL-6 blockade [00:04:14]. Audience questions covered relapse prediction, vision recovery timelines, fatigue, pregnancy, heredity, symptom interpretation, and whether to stop immunotherapy when antibodies become undetectable [00:12:13]. Finally, Dr. Chen described current and upcoming research, including a trial that is currently enrolling participants, and future prospects for optic nerve regeneration while cautioning against unproven stem cell clinics [00:41:37].
John J. Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees and completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa. He then took a position at the Mayo Clinic in 2014 where he specializes in Neuro-Ophthalmology. Currently, he serves as a Consultant and Professor of Ophthalmology and Neurology, and Neuro-Ophthalmology Fellowship Director at the Mayo Clinic.
Among Dr. Chen’s awards and honors are the AAO Senior Achievement Award, Top Doctors in Minnesota, the Heed Fellowship, Real World Ophthalmology Inspiring Academic Leader Award, Ophthalmology Teacher of the Year Award four times leading to induction to the Educators Hall of Fame, and the Mayo Clinic Distinguished Educator Award – awarded to the top educator at Mayo Clinic in Rochester. He is an Associate Editor for Ophthalmology and the Journal of Neuro-Ophthalmology, has authored more than 250 peer-reviewed publications, and focuses his research on ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, particularly NMOSD and MOG antibody–associated disease.
00:00 Welcome and Introductions
01:08 What Is MOGAD?
02:42 Causes and Triggers
03:23 How MOGAD Is Diagnosed
04:14 Acute Attack Treatments
06:35 Steroid Side Effects
08:13 Testing During Treatment
09:09 Long Term Therapies
12:13 Interpreting MOG Positivity
16:51 Eye Symptoms and Vision Fluctuations
20:12 Antibody Titers and Severity
21:19 Relapse Risk After First Attack
23:09 Seizures and Encephalitis
24:17 Vision Recovery After Optic Neuritis
25:13 Acute Treatment Window
25:57 Hereditary Risk Questions
26:35 Stopping Azathioprine Safely
29:56 Managing Post Attack Pain
30:16 Steroids IVIG and Plasma Exchange
32:08 Infections as Triggers
33:01 Retesting MOG Antibodies
35:01 Fatigue and Workup
36:23 Prognosis and Life Expectancy
37:45 Tinnitus and Brain Pressure
39:05 Pediatric and Pregnancy Concerns
41:37 Trials and Future Regeneration
46:05 Research Resources and Wrap Up
In this SRNA "Ask the Expert" episode moderated by Krissy Dilger, Dr. John Chen of the Mayo Clinic answered audience questions about MOG antibody disease (MOGAD). He discussed diagnosis and the importance of titers and live cell-based assays given possible false positives [00:02:42]. Dr. Chen reviewed acute management with early high-dose steroids, prolonged tapers, and escalation to plasma exchange for severe or steroid-refractory attacks, as well as evolving long-term options including IVIG/subcutaneous IG and IL-6 blockade [00:04:14]. Audience questions covered relapse prediction, vision recovery timelines, fatigue, pregnancy, heredity, symptom interpretation, and whether to stop immunotherapy when antibodies become undetectable [00:12:13]. Finally, Dr. Chen described current and upcoming research, including a trial that is currently enrolling participants, and future prospects for optic nerve regeneration while cautioning against unproven stem cell clinics [00:41:37].
John J. Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees and completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa. He then took a position at the Mayo Clinic in 2014 where he specializes in Neuro-Ophthalmology. Currently, he serves as a Consultant and Professor of Ophthalmology and Neurology, and Neuro-Ophthalmology Fellowship Director at the Mayo Clinic.
Among Dr. Chen’s awards and honors are the AAO Senior Achievement Award, Top Doctors in Minnesota, the Heed Fellowship, Real World Ophthalmology Inspiring Academic Leader Award, Ophthalmology Teacher of the Year Award four times leading to induction to the Educators Hall of Fame, and the Mayo Clinic Distinguished Educator Award – awarded to the top educator at Mayo Clinic in Rochester. He is an Associate Editor for Ophthalmology and the Journal of Neuro-Ophthalmology, has authored more than 250 peer-reviewed publications, and focuses his research on ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, particularly NMOSD and MOG antibody–associated disease.
00:00 Welcome and Introductions
01:08 What Is MOGAD?
02:42 Causes and Triggers
03:23 How MOGAD Is Diagnosed
04:14 Acute Attack Treatments
06:35 Steroid Side Effects
08:13 Testing During Treatment
09:09 Long Term Therapies
12:13 Interpreting MOG Positivity
16:51 Eye Symptoms and Vision Fluctuations
20:12 Antibody Titers and Severity
21:19 Relapse Risk After First Attack
23:09 Seizures and Encephalitis
24:17 Vision Recovery After Optic Neuritis
25:13 Acute Treatment Window
25:57 Hereditary Risk Questions
26:35 Stopping Azathioprine Safely
29:56 Managing Post Attack Pain
30:16 Steroids IVIG and Plasma Exchange
32:08 Infections as Triggers
33:01 Retesting MOG Antibodies
35:01 Fatigue and Workup
36:23 Prognosis and Life Expectancy
37:45 Tinnitus and Brain Pressure
39:05 Pediatric and Pregnancy Concerns
41:37 Trials and Future Regeneration
46:05 Research Resources and Wrap Up


![Community Meets Clinic 305. Dr. Elena Grebenciucova
The Community Meets Clinic podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA spoke with Dr. Elena Grebenciucova, an assistant professor of neurology and neurological infections at Northwestern University in Chicago, Illinois, leading its Transverse Myelitis Center, a designated Center of Excellence in Rare Neuroimmune Disorders. She described Northwestern’s multidisciplinary clinic for transverse myelitis, NMOSD, MOGAD, neurosarcoidosis, and related autoimmune conditions, including collaboration with Shirley Ryan AbilityLab and specialists such as pain management, neuro-urology, rehabilitation, and neurosurgery, with an emphasis on faster access to care [04:08]. Dr. Grebenciucova outlined research and clinical trial efforts, including studies on transverse myelitis natural history, optic neuritis therapies, plasma exchange timing, and CAR T-cell strategies [08:36]. View the medical profile of Dr. Grebenciucova:
https://www.nm.org/doctors/1467708305/elena-grebenciucova-md
Elena Grebenciucova, MD completed neurology residency at the University of Chicago in Chicago, Illinois. Dr. Grebenciucova has been interested in autoimmune disorders of the central nervous system, including rare neuroimmune disorders, since medical school. After residency, she completed a neuroimmunology Fellowship under the mentorship of Dr. Brenda Banwell and Joseph Berger at the Perelman School of Medicine of The University of Pennsylvania. Currently she is an assistant professor of Neurology (MS/Neuroimmunology) and neurological infections at Northwestern University in Chicago, Illinois, and she runs the Transverse Myelitis Center there. Dr. Grebenciucova sees patients with rare autoimmune conditions including NMOSD, MOGAD, transverse myelitis, and autoimmune encephalitis.
00:00 Series Introduction
00:52 Meet Dr. Elena Grebenciucova
01:38 Her Path to Neuroimmunology
04:08 Northwestern TM Clinic Overview
08:36 Research and Clinical Trials
11:16 How to Access the Clinic
12:46 Multidisciplinary Care Team
15:32 Self Care and Lifestyle
18:55 Why Choose Northwestern
21:45 Hope for the Future
23:17 Closing Community Meets Clinic 305. Dr. Elena Grebenciucova](https://i.ytimg.com/vi/VcTv_MOWst8/mqdefault.jpg)



![2024 NMOSD Together | Community Q&A
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 2024 NMOSD Together | Community Q&A](https://i.ytimg.com/vi/XU1gGGHEnCY/mqdefault.jpg)

![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)