Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD)

In this special “Ask the Expert” collaboration between The MOG Project and SRNA, Julia Lefelar and Dr. GG deFiebre welcomed Dr. Benjamin Greenberg of UT Southwestern, who answered questions from the audience. Dr. Greenberg reviewed major advances in MOG antibody disease research and diagnostic criteria [00:05:06]. He discussed efforts to predict relapse risk using sustained antibody positivity, demographic and clinical models, and immune-cell profiling studies [00:07:55]. Dr. Greenberg detailed controversies around low-positive antibody titers and how cell-based assays and dilution thresholds affect specificity [00:21:38]. He outlined concepts and progress in tolerance-inducing approaches such as Tregs and CAR T therapy, described differences from B-cell–depleting drugs like rituximab [00:26:32] Finally, Dr. Greenberg highlighted the satralizumab meteoroid trial and the ongoing cosMOG study of rozanolixizumab, emphasizing community engagement, registries, surveys, and trial participation to accelerate access and potential curative strategies [00:38:36]. You can learn more about The MOG Project here:https://mogproject.org/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 at Children’s Medical Center [ https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program ].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.00:00 Welcome01:44 Hosts and Guest Intro05:06 Research Buckets Overview07:55 Predicting Relapse Risk11:46 Tregs and Immune Brakes17:40 Attack Severity and Relapse19:24 MOGAD Criteria Updates21:38 Titers Explained Simply26:32 Targeting MOG Antibodies29:11 CAR T and Immune Reset32:39 When Criteria Changes33:52 Tolerance Research Boom34:48 From Animals to Trials37:17 Community Drives Progress38:36 Meteoroid and cosMOG Clinical Trials41:39 How These Drugs Work44:02 FDA Approval and Access45:49 Insurance Switch Concerns48:39 Rituximab Dosing Debate52:41 Why Antibodies Develop54:18 Future Attack Patterns55:47 CAR T Versus Rituximab57:10 Lab Research and Support01:00:51 Hope for a Cure01:02:14 Closing and Resources

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 Introductions01:08 What Is MOGAD?02:42 Causes and Triggers03:23 How MOGAD Is Diagnosed04:14 Acute Attack Treatments06:35 Steroid Side Effects08:13 Testing During Treatment09:09 Long Term Therapies12:13 Interpreting MOG Positivity16:51 Eye Symptoms and Vision Fluctuations20:12 Antibody Titers and Severity21:19 Relapse Risk After First Attack23:09 Seizures and Encephalitis24:17 Vision Recovery After Optic Neuritis25:13 Acute Treatment Window25:57 Hereditary Risk Questions26:35 Stopping Azathioprine Safely29:56 Managing Post Attack Pain30:16 Steroids IVIG and Plasma Exchange32:08 Infections as Triggers33:01 Retesting MOG Antibodies35:01 Fatigue and Workup36:23 Prognosis and Life Expectancy37:45 Tinnitus and Brain Pressure39:05 Pediatric and Pregnancy Concerns41:37 Trials and Future Regeneration46:05 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 Introductions01:08 What Is MOGAD?02:42 Causes and Triggers03:23 How MOGAD Is Diagnosed04:14 Acute Attack Treatments06:35 Steroid Side Effects08:13 Testing During Treatment09:09 Long Term Therapies12:13 Interpreting MOG Positivity16:51 Eye Symptoms and Vision Fluctuations20:12 Antibody Titers and Severity21:19 Relapse Risk After First Attack23:09 Seizures and Encephalitis24:17 Vision Recovery After Optic Neuritis25:13 Acute Treatment Window25:57 Hereditary Risk Questions26:35 Stopping Azathioprine Safely29:56 Managing Post Attack Pain30:16 Steroids IVIG and Plasma Exchange32:08 Infections as Triggers33:01 Retesting MOG Antibodies35:01 Fatigue and Workup36:23 Prognosis and Life Expectancy37:45 Tinnitus and Brain Pressure39:05 Pediatric and Pregnancy Concerns41:37 Trials and Future Regeneration46:05 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 Introductions01:08 What Is MOGAD?02:42 Causes and Triggers03:23 How MOGAD Is Diagnosed04:14 Acute Attack Treatments06:35 Steroid Side Effects08:13 Testing During Treatment09:09 Long Term Therapies12:13 Interpreting MOG Positivity16:51 Eye Symptoms and Vision Fluctuations20:12 Antibody Titers and Severity21:19 Relapse Risk After First Attack23:09 Seizures and Encephalitis24:17 Vision Recovery After Optic Neuritis25:13 Acute Treatment Window25:57 Hereditary Risk Questions26:35 Stopping Azathioprine Safely29:56 Managing Post Attack Pain30:16 Steroids IVIG and Plasma Exchange32:08 Infections as Triggers33:01 Retesting MOG Antibodies35:01 Fatigue and Workup36:23 Prognosis and Life Expectancy37:45 Tinnitus and Brain Pressure39:05 Pediatric and Pregnancy Concerns41:37 Trials and Future Regeneration46:05 Research Resources and Wrap Up

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode hosted by Krissy Dilger of SRNA, we meet Dr. Elizabeth Wilson, a pediatric neurologist at Cincinnati Children’s Hospital and Director of its Multiple Sclerosis and Neuroimmunology Center. Dr. Wilson described her interest in individualized, longitudinal neuroimmunology care and the rapid evolution of treatments [01:47]. She highlighted her research on social determinants of health, including environmental stressors, caregiver impacts, and the roles of race and ethnicity in pediatric neuroinflammatory outcomes [05:21]. Dr. Wilson outlined how patients can self-refer or be referred, and described the center’s multidisciplinary model involving neuroimmunology, rheumatology, neuro-ophthalmology, neuropsychology, mental health, school support, social work, rehabilitation, and research resources [07:49]. She shared self-care strategies and expressed hope for faster diagnosis, earlier treatment, and biomarkers to better track disease activity and prevent attacks [13:31].Elizabeth Wilson, MD is a pediatric neurologist at Cincinnati Children’s hospital with specialized training in neurology and neuroimmunology. She received a Bachelor of Science in Neurosicence from Lafayette College in Pennsylvania. She then completed medical school at Boston University, Pediatric residency at Boston Children’s Hospital/Boston Medical Center, and Pediatric neurology residency at Boston Medical Center. She went on to pursue a fellowship in Neuroimmunology at Massachusetts General Hospital/Boston Children’s Hospital. She recently became the director of the Multiple Sclerosis and Neuroimmunology Center (MS-NIC) at Cincinnati Children’s Hospital. Through her research she aims to understand how a patient’s environment, including life stressors, interacts with their body and genetics in inflammatory neurologic conditions, such as multiple sclerosis. She believes that by studying this relationship we can better manage these disorders and advocate for changes that will improve patient outcomes. You can view her medical profile here: https://www.cincinnatichildrens.org/bio/w/elizabeth-wilson00:00 Introduction01:47 Why Pediatric Neurology03:27 Choosing Neuroimmunology05:21 Research And Health Equity07:49 Inside Cincinnati Children’s Hospital and the Multiple Sclerosis and Neuroimmunology Center11:07 Multidisciplinary Team Support13:31 Clinician Self Care15:14 Considering The Clinic17:29 Hope For The Future18:50 Closing

In this SRNA “Ask the Expert” episode, Krissy Dilger of SRNA spoke with neuroimmunologist Dr. Shailee Shah about paraneoplastic neurologic syndromes—immune-mediated, “off-target” effects of cancer that can affect the brain, spinal cord, or peripheral nerves. Dr. Shah described updated diagnostic criteria and scoring that combine neurologic phenotypes, cancer risk, and high-risk autoantibodies, and she explained how immune checkpoint inhibitors can trigger immune-related neurologic adverse events that don’t always fit classic rules [00:01:48]. She reviewed how these syndromes differ from other autoimmune neurologic disorders and outlined common subacute presentations such as limbic encephalitis, brainstem encephalitis, cerebellar ataxia, seizures, and neuropathies [00:08:09]. Dr. Shah emphasized prompt evaluation with neurologic exam, MRI/EEG/EMG as appropriate, blood and CSF antibody testing, cancer screening, and coordinated oncologic and immunosuppressive treatment to prevent worsening disability [00:17:24].Shailee Shah, MD is a Clinical Assistant Professor in the Neuroimmunology Division with Northwestern Medicine and Northwestern University. She is an autoimmune neurologist with expertise in the management of paraneoplastic and autoimmune neurological diseases. She also treats rare neuroimmunological diseases such as neuromyelitis optica and MOG associated disease. She is co-director of the Northwestern Medicine Paraneoplastic Neurological Disease Clinic.00:00 Welcome and Guest Intro00:58 What Is Paraneoplastic01:48 New Criteria and Antibodies04:59 Diagnostic Challenges and ICI08:09 Paraneoplastic vs Autoimmune10:22 How Common Are They13:03 Early Symptoms to Watch17:24 When to Seek Care19:09 Testing and Workup24:20 Paraneoplastic Myelitis27:55 Delays and Specialty Centers31:38 Cancer Link and Treatment37:16 Changing Therapies38:19 Recovery and Prognosis39:58 Patient Advice and Hope42:52 Closing

In SRNA’s Ask the Expert episode moderated by Krissy Dilger, Dr. Elena Grebenciucova described neuromyelitis optica spectrum disorder (NMOSD) symptoms including optic neuritis, transverse myelitis, brainstem syndromes, and intractable hiccups [00:01:05]. She outlined diagnostic evaluation using MRI and correct blood-based antibody testing (preferably cell-based assays), common diagnostic pitfalls, and the need to rule out infections before immunosuppressive treatment [07:08]. Dr. Grebenciucova reviewed urgent relapse management with IV steroids and early plasma exchange, side effects, long-term preventive therapies (FDA-approved and off-label) [14:02]. Finally, she answered community questions on supplements, chronic optic neuritis, rehab appeals, pain/spasticity, pregnancy planning, long-term treatment duration, mental health, seronegative syndromes, follow-up frequency, and recovery expectations [25:22].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 Welcome and Introduction01:05 What Is NMOSD?01:59 Symptoms and Relapse Signs03:27 What Causes NMOSD?07:08 How NMOSD Is Diagnosed10:09 Key Tests and Pitfalls14:02 Acute Attack Treatment17:18 Steroid Side Effects22:19 Long-Term Therapies Worldwide25:22 Community Questions, Beginning with Vitamins27:40 Optic Neuritis Breakthroughs28:47 Chronic Optic Nerve Inflammation29:19 Winning Insurance Appeals31:23 Waist Band Pain and Spasticity34:04 Pregnancy and Family Planning37:40 Stopping Long-Term Treatment39:40 Long-Term Side Effects43:04 Mood and Personality Changes49:47 Trials for Seronegative NMOSD52:55 Follow Up Visit Schedule55:34 Relapse Recovery Timeline58:02 Closing

In this episode, Krissy Dilger of SRNA interviewed Dr. Vivien Xie regarding the significance of brain lesions in pediatric MOG antibody disease (MOGAD). Dr. Xie explained the autoimmune nature of MOGAD and the common occurrence of optic neuritis in young patients [00:01:28]. She described her study comparing children with optic neuritis who had brain lesions to those who did not, revealing that brain lesions often did not result in additional symptoms [00:02:41]. The findings suggested that brain lesions didn't significantly impact long-term outcomes, which may provide reassurance for patients with concerning MRI results [00:06:43]. Finally, they discussed the study’s implications for better understanding different phenotypes of MOGAD and improving patient prognosis. Future research directions include more detailed MRI analysis and cognitive outcome assessment [00:12:29]. You can read about this multicenter study here:https://pubmed.ncbi.nlm.nih.gov/41167051/. This work was completed with philanthropic support from the Global Autoimmune Institute and Fighting Fires with Owen.Vivien Xie, MD, is a pediatric neurologist and neuroimmunology fellow at Children’s National Hospital and MedStar Georgetown University Hospital. Originally from Baltimore, she earned her undergraduate degree in biology from the University of Maryland, College Park and her medical degree from the University of Maryland School of Medicine. She then completed a child neurology residency at Children’s National Hospital, where she discovered a passion for helping young patients and their families navigate rare and often life-long neuroimmunologic disorders. Dr. Xie's research interests include pediatric multiple sclerosis and MOG antibody–associated disease, with publications and presentations spanning national and international conferences. She is a committed academic clinician dedicated to advancing clinical trials and research initiatives to improve diagnosis and care for children with rare neuroimmunologic conditions.00:00 Introduction01:28 Understanding MOG Antibody Disease02:41 Research Motivation and Background05:33 Study Design and Methodology06:43 Key Findings and Implications12:29 Future Research Directions14:10 Conclusion and Acknowledgements

In this "ABCs of MOGAD" episode, "Steroid Dependence," Krissy Dilger of SRNA was joined by Dr. Eoin Flanagan from the Mayo Clinic in Rochester, MN. They began with a summary of how steroids are used to manage MOG antibody disease, particularly during acute attacks [00:01:25]. Dr. Flanagan described the mechanics of steroids in reducing brain inflammation and the importance of early treatment [00:04:14]. They discussed the concept of steroid dependence and the complications that arise when tapering down the steroid dose [00:05:46]. Dr. Flanagan highlighted alternative treatments to manage steroid dependence and emphasized the importance of working closely with healthcare providers to safely reduce steroid use over time [00:09:42].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 master's 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.00:00 Introduction01:25 Understanding Steroids in MOG Antibody Disease04:14 Steroid Dosage and Administration05:46 Steroid Dependence in MOGAD Patients09:42 Managing Steroid Dependence14:02 Balancing Inflammation Control and Steroid Risks17:31 Conclusion

BIG ANNOUNCEMENT! Beginning January 5, 2026, SRNA is bringing all five of our podcast series together into a single, unified podcast channel called “SRNA Soundwaves.” This means that all episodes of "Ask the Expert, ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, and Community Meets Clinic" - past and present - will now be found in one feed on Apple Podcasts, Spotify, and other podcast streaming platforms.What this means for you: If you are already subscribed to our "Ask the Expert" series, you will automatically be subscribed to "SRNA Soundwaves" once the merge happens on January 5th. If you are subscribed to "ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, or Community Meets Clinic," make sure to subscribe to "Ask the Expert," which will be renamed “SRNA Soundwaves” on January 5th, to continue to get new episodes in your feed. You can subscribe here: https://creators.spotify.com/pod/profile/srna-ask-the-expert/We hope this change helps our community navigate our educational content more easily and enjoy a smoother, more organized podcast experience. If you have questions about the upcoming change, please email: [email protected]