Ask the Expert SRNA
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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.
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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. -
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. -
1201. A Conversation about Grief and Loss with Lisa McDaniel
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. This episode is part of a special series on grief and loss. Lisa McDaniel joined Krissy Dilger of SRNA to share about her family’s experience with neuromyelitis optica spectrum disorder (NMOSD).
Lisa McDaniel’s awareness of rare disease began in 2007, after the onset of neuromyelitis optica spectrum disorder (NMOSD) in her 5-year-old son, Collin. She learned what it took to be a “Rare Mom” and fought for her son’s life. After Collin’s passing in 2012, Lisa switched gears and went to work for the Guthy-Jackson Charitable Foundation (GJCF), where she is now the Director of Patient Advocacy. She now uses her extensive caregiver experience to help other patients and families living with NMOSD. Through GJCF, Lisa is able to engage with the NMOSD community to provide resources, information, and education, as well as lead support groups and raise awareness of rare diseases through educational events. -
1115. A Conversation about Grief and Loss with Chris Lopardi
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. This episode is part of a special series on grief and loss. Chris Lopardi joined Krissy Dilger of SRNA to share about his family’s experience with acute disseminated encephalomyelitis (ADEM).
Chris Lopardi is the father of Mason Lopardi. Chris lost his son, Mason at age seven to ADEM in May of 2020. Chris, his wife Amanda, and their family have made it their passion to help spread the word of what ADEM is and to help those affected by it. Through their organization, The Miles for Mason Memorial Foundation, they hope to help those affected by ADEM. -
1114. Neurosarcoidosis and Rare Neuroimmune Disorders
In this "Ask the Expert" episode, Krissy Dilger of SRNA interviewed Dr. Giovanna Manzano about neurosarcoidosis and rare neuroimmune disorders. They explored the definition of neurosarcoidosis, its symptoms, and the diagnostic process, emphasizing the challenges in identifying the condition due to its diverse manifestations. Dr. Manzano delved into the potential causes of neurosarcoidosis, highlighting immune system dysregulation and the formation of granulomas. Treatment options, including steroids and immune suppressants, were discussed, and the chronic nature of the disease was explored, with considerations for relapses and long-term effects. The conversation concluded with insights into patient advocacy, the importance of early diagnosis, and ongoing research efforts in the field.
Giovanna S. Manzano, MD is a neuroimmunologist/MS specialist and neurohospitalist at the Massachusetts General Hospital and the Brigham and Women's Hospital in Boston, Massachusetts. She provides care to patients with neuroimmunologic diseases inclusive of CNS demyelinating disorders, autoimmune/paraneoplastic encephalitis and cerebellar degeneration, neurosarcoidosis, and neurotoxicities from oncologic therapies. Her research is focused on optimizing care delivery and approach to treatment of neuroimmunologic conditions by way of studies that emphasize patient reported outcomes, quality improvement, and clinical trial design. -
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.
Customer Reviews
Great podcast
This podcast is so informative, thank you! I’d also really love a MOG Antibody Related Disorder follow up episode. A neuropsychiatric symptoms and treatment episode would be great too!
Very informative!
Can u please do an updated interview with Dr. Greenberg about MOG antibody?