SRNA Soundwaves

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.

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.

For this episode of “Ask the Expert,” Krissy Dilger of SRNA was joined by Dr. Elizabeth Wilson. Dr. Wilson discussed her research into how a patient's environment, including life stressors, interacts with their body, genetics, and inflammatory neurologic conditions. She also described the ways that healthcare providers and the community can bridge the gap for those who are negatively affected by health disparities.

Krissy Dilger of SRNA was joined by Dr. Robert Shin. Dr. Shin began by summarizing the role of neuro-ophthalmologists and how they specialize in the intersection of neurology and ophthalmology, and address vision-related issues, including those associated with neuromyelitis optica spectrum disorder (NMOSD). Dr. Shin talked about the tests used to diagnose visual issues. He discussed how distinguishing NMOSD from other conditions that cause optic neuritis, like multiple sclerosis (MS) and MOG antibody disease (MOGAD), can be challenging. He emphasized the importance of rapid and proper treatment of optic neuritis. Finally, Dr. Shin described how low-vision therapy may help those with significant visual impairment.

SRNA's Krissy Dilger was joined by Dr. Hamza Coban to discuss neuromyelitis optica spectrum disorder (NMOSD) relapses. They discussed distinguishing between true relapses, pseudo relapses, and Uhthoff's phenomenon. Dr. Coban discussed the importance of early diagnosis and prompt treatment to prevent severe and debilitating symptoms. He described various treatments to prevent relapses. He also talked about the timing of relapses and when to consider switching therapies.

For this episode of “Ask the Expert: Research Edition,” Dr. GG deFiebre of SRNA was joined by Dr. Monique Anderson. In 2023, Dr. Monique Anderson was awarded a research grant funded through the Pauline H. Siegel Eclipse Fund of SRNA. Dr. Anderson described the study, the background, and what led to the development of this particular research project, which is investigating whether novel neuronal biomarkers within exosomes are found in the blood of patients with transverse myelitis. Dr. Anderson discussed the possible impact of this research on the areas of genetics and diagnostic criteria.

Krissy Dilger of SRNA was joined by Kathy Costello of Can Do MS for an “Ask the Expert” podcast on "Can Do MS: TAKE CHARGE® and Coaching Series." Kathy began by explaining the history and mission of the organization Can Do MS. She then discussed why Can Do MS partnered with SRNA to bring some of its programs to the rare neuroimmune community. Finally, Kathy described the goals and logistics of the TAKE CHARGE® program and the Coaching Series.

For this “ABCs of NMOSD” episode, Rebecca Whitney of SRNA was joined by Dr. Michael Levy. Dr. Levy gave an overview of I-CAN, a Phase 2 study of inebilizumab in children with aquaporin-4 positive neuromyelitis optica spectrum disorder or NMOSD. As one of the principal investigators for the study, he shared details about inclusion criteria and inebilizumab, brand name Uplizna™. Dr. Levy also discussed what someone can expect if they choose to participate in this trial, how participation would impact someone’s current treatment, and the timeline of this trial. Additional information is available here:

⁠https://wearesrna.org/clinical-studies-and-trials/study-of-inebilizumab-in-pediatric-subjects-with-neuromyelitis-optica-spectrum-disorder/⁠

⁠https://clinicaltrials.gov/study/NCT05549258?term=NCT05549258&aggFilters=status:not%20rec&rank=1

For this episode of “Community Meets Clinic,” Rebecca Whitney of SRNA was joined by Dr. Kelsey Poisson and Dr. Camille Wilson of Nationwide Children's Hospital in Columbus, Ohio. Dr. Kelsey Poisson shared what led her to pediatric neurology and neuroimmunology, as well as her work researching social determinants of health and pediatric neuromyelitis optica spectrum disorder (NMOSD). Dr. Wilson discussed her work as a clinical psychologist with specialty training in neuropsychology. She spoke about her interest in long-term outcomes from a neurocognitive perspective of people who experience events with a neuroimmune basis. Next, they gave an overview of the multidisciplinary team at Nationwide Children's Hospital and which specialists a new patient might expect to see. Dr. Poisson and Dr. Wilson also described how they look after themselves and stay grounded. Finally, they provided details on Neuroimmune Family Education Day which will take place on September 9, 2023. You can view the medical profiles of our guests here:

https://www.nationwidechildrens.org/find-a-doctor/profiles/kelsey-e-poisson

https://www.nationwidechildrens.org/find-a-doctor/profiles/camille-s-wilson

Dr. Poisson is a board-certified child neurologist at Nationwide Children's Hospital and assistant professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine.  She received her medical degree from Wake Forest School of Medicine prior to completing her Child Neurology residency at Cincinnati Children’s Hospital Medical Center. She pursued a fellowship in pediatric and adult neuroimmunology at the University of Alabama at Birmingham and Children’s of Alabama prior to joining the team at Nationwide Children’s Hospital. Her clinical and research interests include pediatric neuromyelitis optica spectrum disorder, social determinants of health, transitions of care to adulthood, and long-term quality of life in pediatric-onset multiple sclerosis.

Dr. Wilson is a board certified clinical neuropsychologist. She graduated with a doctorate in clinical psychology from the University of Maryland, Baltimore County. She completed a predoctoral clinical psychology internship and postdoctoral fellowship at Nationwide Children’s Hospital with a specialization in pediatric neuropsychology. She is an assistant clinical  professor in the Department of Pediatrics at the Ohio State University. She is actively involved in clinical research to better understand neurocognitive and psychosocial functioning of individuals affected by neuroimmune diseases. She cares deeply for helping patients and families learn how to navigate their diagnosis to achieve the best outcomes at home, school, and their community.

Dr. Cyrena Gawuga returned to speak with Dr. GG deFiebre of SRNA for an “Ask the Expert” episode titled "Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability Pride." Dr. Gawuga discussed accessibility, accommodations for employment and education, and inclusion in classrooms. She shared possible solutions for a lack of accommodations in health care settings. Finally, Dr. Gawuga described the meaning of Disability Pride Month.