Uploaded September 2024 | Updated September 2026, 1 week ago
In “I have MOGAD. Now what?” the first episode of the “ABCs of MOGAD” series, Krissy Dilger of SRNA was joined by Dr. Michael Levy. Dr. Levy explained the MOG antibody disease diagnosis, including its autoimmune nature and symptoms [00:01:12]. The discussion covered the history and evolution of the disorder, distinguishing it from other disorders like multiple sclerosis and neuromyelitis optica [00:05:24]. Dr. Levy detailed the diagnostic process, including antibody tests, MRIs, and clinical criteria [00:13:47]. The episode also explored treatment options, long-term effects, and the prognosis of the disease [00:29:30].
Michael Levy, MD, PhD is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology & Neuroinfectious Disease. He completed the MD/PhD program at Baylor College of Medicine with a focus on neuroscience. In 2009, Dr. Levy was appointed to the faculty as Assistant Professor at Johns Hopkins where he started the Neuromyelitis Optica Clinic and Research Laboratory and in 2019 he moved to the Massachusetts General Hospital and Harvard Medical School to develop the research program in neuroimmunology.
Clinically, Dr. Levy specializes in taking care of patients with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease, acute disseminated encephalomyelitis and optic neuritis. In addition to neuroimmunology clinics, Dr. Levy has a special interest in patients with superficial siderosis of the central nervous system. Dr. Levy is the principal investigator on several clinical studies and drug trials for all of these conditions.
In the laboratory, Dr. Levy’s research focuses on the development of animal models of neuromyelitis optica and transverse myelitis with the goal of tolerization as a sustainable long-term treatment.
00:00 Introduction and Guest Introduction
01:33 Understanding MOG Antibody Disease
03:09 History and Discovery of MOG Antibody Disease
06:13 Diagnostic Process for MOG Antibody Disease
09:09 Acute and Long-Term Treatment Options
14:33 Choosing the Right Treatment
16:01 Rehabilitation and Follow-Up
18:42 Long-Term Effects and Prognosis
22:19 Conclusion and Future Discussions
In “I have MOGAD. Now what?” the first episode of the “ABCs of MOGAD” series, Krissy Dilger of SRNA was joined by Dr. Michael Levy. Dr. Levy explained the MOG antibody disease diagnosis, including its autoimmune nature and symptoms [00:01:12]. The discussion covered the history and evolution of the disorder, distinguishing it from other disorders like multiple sclerosis and neuromyelitis optica [00:05:24]. Dr. Levy detailed the diagnostic process, including antibody tests, MRIs, and clinical criteria [00:13:47]. The episode also explored treatment options, long-term effects, and the prognosis of the disease [00:29:30].
Michael Levy, MD, PhD is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology & Neuroinfectious Disease. He completed the MD/PhD program at Baylor College of Medicine with a focus on neuroscience. In 2009, Dr. Levy was appointed to the faculty as Assistant Professor at Johns Hopkins where he started the Neuromyelitis Optica Clinic and Research Laboratory and in 2019 he moved to the Massachusetts General Hospital and Harvard Medical School to develop the research program in neuroimmunology.
Clinically, Dr. Levy specializes in taking care of patients with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease, acute disseminated encephalomyelitis and optic neuritis. In addition to neuroimmunology clinics, Dr. Levy has a special interest in patients with superficial siderosis of the central nervous system. Dr. Levy is the principal investigator on several clinical studies and drug trials for all of these conditions.
In the laboratory, Dr. Levy’s research focuses on the development of animal models of neuromyelitis optica and transverse myelitis with the goal of tolerization as a sustainable long-term treatment.
00:00 Introduction and Guest Introduction
01:33 Understanding MOG Antibody Disease
03:09 History and Discovery of MOG Antibody Disease
06:13 Diagnostic Process for MOG Antibody Disease
09:09 Acute and Long-Term Treatment Options
14:33 Choosing the Right Treatment
16:01 Rehabilitation and Follow-Up
18:42 Long-Term Effects and Prognosis
22:19 Conclusion and Future Discussions



![102. Dr. Paula Barreras
The Community Meets Clinic podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Paula Barreras. Dr. Barreras discussed her journey into neuroimmunology, emphasizing the impact of patient interactions [00:01:31]. Her early research focused on misdiagnoses in disorders like transverse myelitis, later expanding to neurosarcoidosis, aiming to improve diagnostic accuracy [00:02:42]. She shared how Cedars-Sinais multidisciplinary clinic, enhanced by specialists, offers comprehensive care, aiming to address patients various needs efficiently [00:05:41]. You can view the medical profile of Dr. Barreras here:
https://www.cedars-sinai.org/provider/paula-barrerascortes-4003480.html#fad-provider-bio featured
Dr. Paula Barreras is a board-certified neurologist with expertise in neuroimmunology. She is an assistant professor of neurology at Cedars-Sinai Medical Center in Los Angeles. Dr. Barreras specializes in immune mediated conditions affecting the brain and spinal cord, including neurosarcoidosis and spinal cord disorders such as neuromyelitis optica, MOG associated disease, transverse myelitis, and their mimics.
Dr. Barreras completed her medical school at the University of the Andes, followed by a postdoctoral research fellowship in neuroimmunology at Johns Hopkins University. She completed her neurology residency and clinical neuroimmunology fellowship also at Johns Hopkins before joining the team at Cedars-Sinai Medical Center. Her research focuses on identifying predictors of final diagnosis after the initial diagnosis of myelopathy, as well as predictors of outcomes in myelitis and neurosarcoidosis. 102. Dr. Paula Barreras](https://i.ytimg.com/vi/STrcnYrR_4Q/mqdefault.jpg)


![Ask the Expert 1411. All About the Rare Neuroimmune Disorders Symposium
In this SRNA “Ask the Expert” episode, Krissy Dilger of SRNA introduced the Rare Neuroimmune Disorder Symposium (RNDS), a three-day hybrid event in Dallas, Texas (October 15–17, 2026) that connects individuals and families with leading experts for education on diagnosis, symptom management, rehabilitation, mental health, and research. You can view details about RNDS, including the agenda and registration, on the event page:
https://www.srna.ngo/2026-rnds
SRNA founder and president Sandy Siegel recounted how early community isolation and a 1999 gathering helped spark ongoing symposia [00:08:37]. He described the development of a medical advisory board and collaboration with Johns Hopkins that supported research growth, evolving diagnostic definitions, and advances such as plasma exchange and newer therapies for conditions including TM, NMOSD, ON, ADEM, AFM, and MOGAD [00:12:11]. Community support coordinator Leah Campbell shared about her neuromyelitis optica (NMO) diagnosis and described RNDS as invaluable for expert access, treatment decision support, and meaningful connection with others who share similar experiences [00:34:45].
Sandy Siegel is the President of SRNA. Sandy got involved with SRNA shortly after his wife, Pauline, contracted TM in 1994 at the age of 35. At the time of her onset, Pauline was a kindergarten teacher. Sandy has been an officer and a board member of SRNA since its inception. Sandy has also served as SRNA’s newsletter and journal editor during his more than two decades of service to the organization. Sandy is a cultural anthropologist with specializations in Native Americans, psychological anthropology, and culture change. Sandy has worked as an adjunct professor at Capital University, Franklin University, the Urban/Rural Program of the College of Great Falls, and the Intertribal Education Center of the Fort Belknap Reservation. Sandy retired from the State of Ohio in 2011 after more than 35 years of service. Sandy returned to college in the fall of 2011 as a photography student at Columbus State Community College. Sandy and Pauline have two sons, four grandsons, and one granddaughter.
Leah Campbell is SRNAs Community Support Coordinator. Leah was diagnosed with neuromyelitis optica (NMO) in May 2006 after 17 years of unexplained symptoms and misdiagnosis. She was the first blind student and salutatorian of Altus High School and the first blind graduate of Rhodes College, earning a BA in mathematics. Following graduation and after a treatment for a disease she had been misdiagnosed with, she became quadriplegic and lost sensation of touch, having to relearn how to navigate life as both blind and paralyzed. She is dedicated to using her experiences to support and advocate for others.
00:00 Welcome
01:03 What the Rare Neuroimmune Disorders Symposium Offers
02:35 Meet Sandy and Leah
03:13 Origins of RNDS
08:37 1999 Breakthrough Symposium
12:11 Centers of Excellence Growth
22:31 How RNDS Evolved
31:30 Why RNDS Still Matters
34:45 Leahs Journey with NMOSD
35:43 Leahs RNDS Experience
38:40 Advice and Closing Ask the Expert 1411. All About the Rare Neuroimmune Disorders Symposium](https://i.ytimg.com/vi/TW04wCPKhSE/mqdefault.jpg)

![2024 RNDS | What’s my Diagnosis? Community Members Share their Diagnostic Journey
At the 2024 RNDS, Dr. GG deFiebre of the Siegel Rare Neuroimmune Association (SRNA) spoke with community members, Angela Jackson, Andrew Jopson, Ashley Harrington, Lyd Lacey and Andreas Melitsanopoulos about their diagnostic journey. The participants shared their diagnostic journeys and the onset of their symptoms [00:00:30]. The conclusion revealed the specific diagnoses of each participant and emphasized the similarities and differences in their experiences [00:35:55].
00:00 Introduction and Panel Overview
00:37 Panelist Introductions
01:29 Initial Symptom Onset
07:39 Detailed Symptom Experiences
21:49 Diagnostic Tests and Challenges
27:22 Initial Treatments and Responses
30:24 Personal Reflections and Support
35:55 Revealing the Diagnoses
37:36 Conclusion and Organizational Impact 2024 RNDS | What’s my Diagnosis? Community Members Share their Diagnostic Journey](https://i.ytimg.com/vi/U4awgJE6lxo/mqdefault.jpg)
![Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD)
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 Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD)](https://i.ytimg.com/vi/Un3Sx3YzPi4/mqdefault.jpg)
