Ask the Expert

Siegel Rare Neuroimmune Association (SRNA)

The goal of our “Ask the Expert” podcast series is to share the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions to experts who specialize in these disorders. The podcasts are moderated based on questions submitted by our community. We would like to hear from you. If there are topics that you would like us to address in our podcasts, you can share your thoughts by sending an email to info@wearesrna.org and please use SRNA Podcast in the subject. read less
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Episodes

1209. What is ULTOMIRIS?
May 31 2024
1209. What is ULTOMIRIS?
Dr. Michael Levy joined Dr. GG deFiebre of SRNA for the “Ask the Expert” podcast episode titled "What is ULTOMIRIS?" Dr. Levy explained that ravulizumab (ULTOMIRIS) is the newest FDA-approved medication for neuromyelitis optica spectrum disorder (NMOSD), offering a longer dosing interval compared to eculizumab (Soliris) [00:01:08]. Dr. Levy discussed the mechanism of ULTOMIRIS, which blocks the complement system to prevent relapses in NMOSD and highlighted the importance of vaccinations and possible antibiotic use to prevent infections while on this medication [00:02:48]. He also noted that ULTOMIRIS is more affordable than Soliris and emphasized the need for insurance coverage to make it accessible to patients [00:16:39]. 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.
1208. MOGcast - Understanding Cortical Encephalitis
May 3 2024
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.
1207. MOGcast - The Latest in Treatments from an Adult and Pediatric Perspective
Apr 26 2024
1207. MOGcast - The Latest in Treatments from an Adult and Pediatric Perspective
This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “The Latest in Treatments from an Adult and Pediatric Perspective.” Dr. Elias Sotirchos and Dr. Grace Gombolay joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA and answered questions from the online audience. Dr. Sotirchos and Dr. Gombolay reviewed acute treatments for MOG antibody disease (MOGAD) in adults and children and possible side effects [00:03:57]. Regarding preventative treatments, Dr. Sotirchos and Dr. Gombolay described the importance of shared decision-making with patients to consider factors like administration method, insurance coverage, and patient preferences [00:20:10]. They discussed ongoing clinical trials for MOGAD treatments and the hope for future FDA approval [00:51:38]. Finally, Dr. Gombolay highlighted the difficulties in accessing preventive medications for patients from certain demographic groups and ongoing efforts to improve access [00:56:35]. 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. Grace Gombolay, MD is a Pediatric Neurologist at Children’s Healthcare of Atlanta and Assistant Professor at Emory University School of Medicine. Dr. Gombolay attended medical school at The Johns Hopkins School of Medicine, where she was awarded a yearlong position as a Howard Hughes Medical Institute–National Institutes of Health Research Scholar in basic immunology research. After finishing medical school, she completed a pediatric neurology residency at Massachusetts General Hospital. She then completed an additional year of fellowship training in pediatric neuroimmunology at Boston Children’s Hospital, Brigham and Women’s Hospital and Massachusetts General Hospital. Over the course of her career at Children’s, Dr. Gombolay started the Pediatric Neuroimmunology and Multiple Sclerosis Clinic. This multidisciplinary clinic helps manage all aspects of patient care, including medical, psychological and school-related issues. Her goal is to have the clinic become part of multi-center collaborations for clinical care and research. Dr. Gombolay also serves as a part-time consultant for the Centers for Disease Control and Prevention (CDC), where she reviews cases related to surveillance of acute flaccid myelitis cases in the U.S.
1206. Community Spotlight - Voices of SRNA Volunteers | Part 2
Apr 15 2024
1206. Community Spotlight - Voices of SRNA Volunteers | Part 2
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, titled, “Voices of SRNA Volunteers, Part 2,” Minaal Zahid and Doug Kirby joined Lydia Dubose of SRNA. Doug shared his journey with NMOSD, emphasizing the role of volunteers in providing support and education [00:01:49]. Minaal discussed her motivation to volunteer stemming from her brother’s diagnosis of NMOSD [00:02:42]. Minaal and Doug delved into their volunteer activities, including organizing events and contributing to educational resources, highlighting the impact of volunteering on both personal growth and community support [00:07:13]. Minaal Zahid is an incoming neurodevelopmental disabilities resident physician whose journey in medicine was shaped by her family's history of autism and NMOSD. She witnessed firsthand the challenges her family faced in obtaining a diagnosis for her younger brother, who struggled with NMOSD symptoms for nearly a year before diagnosis, resulting in the unfortunate loss of vision in his left eye. Assuming the role of caretaker as the eldest daughter, Minaal was inspired to pursue a career in neurology to assist families facing similar struggles with neurological disorders. This pursuit led her to SRNA where she is excited to educate the general public and her colleagues about rare neuroimmune disorders and help enact policy changes to better serve patients with neurological disabilities. Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his master's degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife Holly for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environmental field working at two different hazardous waste disposal sites and then switched to information technology. During his career, Doug has been a developer and manager. He currently lives in Herriman, Utah where he and Holly are looking forward to retirement in a little over three years. Doug was diagnosed with NMOSD when he was 56 in 2017. His vision is fine, but he has some physical difficulties including numbness and trouble walking that he has learned to live with. Doug enjoys meeting with and learning from others who are going through similar challenges.
1205. Community Spotlight - Voices of SRNA Volunteers | Part 1
Apr 8 2024
1205. Community Spotlight - Voices of SRNA Volunteers | Part 1
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, Alexandra Goulimi and Angela Jackson joined Lydia Dubose of SRNA share their backgrounds and how they got involved with volunteering for SRNA [00:01:43]. Alexandra and Angela discussed their experiences with rare neuroimmune disorders and the support they found through SRNA's programs [00:13:41]. They also shared what they hope to see in the future related to rare neuroimmune disorders and SRNA [00:22:53] and offered advice for anyone who might be interested in getting involved [00:30:51]. Alexandra Goulimi was born in 1969 and lived in Germany until she moved to Greece in 2011. She has a background in Human Resources Development and holds a master’s degree in Sociology and a PhD in Communications. In 2009 Alexandra met the Human Design System and has been experimenting since then with making decisions guided by her body’s intelligence. In 2017 Alexandra was diagnosed with NMOSD. It was challenging to meet the initial shock and deal with the symptoms. She has navigated her NMO-journey guided in her decisions by her intuitive response. Alexandra’s experience of NMO has led her to a profound understanding and a deeper love of herself and life. Angela Jackson has been a member of a book club for 20 years. She is also a published author. Angela was a VP of Account Management working for a software company responsible for Customer Success. On February 27, 2019, she woke up with a numb left thigh. 12 hours later she was paralyzed from the waist down, diagnosed with idiopathic transverse myelitis, and hospitalized. Her lifestyle changed: acceptance of the diagnosis, therapy, limitations, working from home, depending on others... Moving forward with a positive outlook on life, Angela joined SRNA, serving as a Peer Connect Leader and hosting the first Houston, Texas Walk-Run-N-Roll. Angela has an awesome family. She is thankful for loving and supportive family and friends.
1204. Community Spotlight - Ilona Williams
Mar 22 2024
1204. Community Spotlight - Ilona Williams
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Ilona Williams joined Lydia Dubose of SRNA to discuss her journey with neuromyelitis optica spectrum disorder (NMOSD). Ilona described her initial symptoms and the challenges she faced in receiving a correct diagnosis [00:01:22]. Despite experiencing skepticism and frustration, she persisted in seeking medical care and advocating for herself [00:02:38]. Eventually, after enduring significant health challenges, she was correctly diagnosed [00:12:07]. Despite ongoing symptoms and lifestyle adjustments, Ilona highlighted the importance of education, advocacy, and supportive communities in managing NMOSD [00:18:55] and mental health [00:37:56]. Ilona grew up as a military brat, spending most of her youth in Germany. She attended high school and community college in Maryland and has worked in Intellectual Property (IP) as a secretary and coordinator in two large international law firms over the last 25 yrs. Originally, she was diagnosed with transverse myelitis (TM) in 2006. Then, after additional issues and relapses, she was diagnosed with and treated for relapsing and remitting multiple sclerosis (MS). Finally, in 2018, Ilona was diagnosed with NMOSD AQP4+. In 2018 and 2019, she also battled breast cancer and was treated with radiation, chemotherapy, double mastectomy surgery, and complete hysterectomy. After five months of being transferred in and out of different hospitals and two years of very intensive speech therapy and physical therapy, she lives independently and on her own. Her mother is a great advocate and caretaker. She keeps Ilona motivated, strong, with her spirits up, and looking forward to every day. She’s helped to motivate Ilona to become her own best advocate.
1203. Community Spotlight - Rick Telander
Mar 15 2024
1203. Community Spotlight - Rick Telander
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Rick Telander joined Dr. GG deFiebre of SRNA to talk about his journey with transverse myelitis (TM). Rick shared about his diagnostic process [00:08:05], the testing that took place, and the treatment and rehabilitation that he received [00:09:25]. He emphasized the importance of early diagnosis, research for better treatments, and support from organizations like SRNA [00:25:02]. Rick also discussed ongoing symptoms, his experience of living with TM, and the children’s book of poetry that he published [00:26:11]. Rick Telander is the Senior Sports Columnist for the Chicago Sun-Times. He is the author of ten books and was previously a senior writer for Sports Illustrated and ESPN, the Magazine. An original member of “The Sportswriters on TV” television show, Rick has been named Illinois Sportswriter of the Year nine times, and his work has been collected in over a dozen anthologies. He has been awarded the Sigma Delta Chi Award by the Society of Professional Journalists and the Dan Jenkins Lifetime Medal for Excellence in Sportswriting from the University of Texas. In 2021 he was inducted into the National Sportswriters Hall of Fame in Winston-Salem, North Carolina. Rick’s book, Sweet Dreams: Poems and Paintings for the Child Abed is available online: https://www.skyhorsepublishing.com/9781510778337/sweet-dreams/
1202. Increased Intracranial Pressure in Pediatric MOG Antibody Disease
Feb 16 2024
1202. Increased Intracranial Pressure in Pediatric MOG Antibody Disease
For this episode of “Ask the Expert: Research Edition,” "Increased Intracranial Pressure in Pediatric MOG Antibody Disease," Krissy Dilger of SRNA was joined by Dr. Cynthia Wang and Dr. Linda Nguyen. They discussed MOG antibody disease and the significance of MOG antibodies in diagnosis (00:00:02-00:03:36). Dr. Nguyen highlighted the background of the study and how this research focused on determining the impact of elevated intracranial pressure on patient outcomes (00:03:52-00:06:56). She reviewed the implications of the findings for patient management, emphasizing the importance of early recognition and intervention to mitigate disability (00:10:34-00:14:02). Dr. Wang and Dr. Nguyen anticipated future studies and stressed the collaborative effort required for better patient outcomes and the need for ongoing research in this field (00:17:16-00:20:30). Dr. Linda Nguyen completed her MD, PhD training at West Virgina University in 2017, and then pediatric neurology residency at University of California San Diego in 2022. Currently, she is a neuroimmunology fellow at University of Texas Southwestern. 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.
1113. Acute Treatments and Rare Neuroimmune Disorders
Nov 28 2023
1113. Acute Treatments and Rare Neuroimmune Disorders
Krissy Dilger of SRNA was joined by Drs. John J. Chen and Elias S. Sotirchos for an “Ask the Expert” podcast episode titled “Acute Treatments and Rare Neuroimmune Disorders.” The experts began by providing an overview of treatments for an acute demyelinating attack and how they are administered. They also discussed side effects, safety concerns, and the decision process for escalation. Finally, the experts shared age considerations and upcoming research. John Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees. He 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/honors are the AAO Achievement Award, resident and fellow teaching awards at the University of Iowa, Ophthalmology Teacher of the Year Award three times at the Mayo Clinic, 2023 Mayo Clinic Distinguished Educator Award, Top Doctors in Minnesota, and the Heed Fellowship. He is a board member for the North American Neuro-Ophthalmology Society and is on multiple committees for the AAO, co-chairs the Upper Midwest Neuro-Ophthalmology Group, is a member of the American Ophthalmological Society and American Eye Study Club, previously served as the President for the Minnesota Academy of Ophthalmology and participated in the AAO and AUPO Leadership Development Programs. He has over 200 peer-reviewed publications, has received several research awards, and is currently RO1 funded through the NIH. He has given over 200 oral presentations, including multiple named lectureships, and visiting professorships, on his interests in ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, especially NMOSD and MOG antibody-associated disease. 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.