Recap of SRNA’s 2022 Rare Neuroimmune Disorders Symposium
The 2022 Rare Neuroimmune Disorders Symposium (RNDS) was our first-ever hybrid symposium, where people could attend in person, online, or a combination of both. The 2022 RNDS was hosted by SRNA, Massachusetts General Hospital, UT Southwestern Medical Center, Johns Hopkins Medicine, Harvard Medical School, Children’s Health Dallas, Johns Hopkins Myelitis and Myelopathy Center, MGH NMO Clinic and Research Laboratory, and the CONQUER Program. Speakers, staff members, and attendees together resulted in 264 people gathering in person and online to discuss, learn, and connect about topics related to rare neuroimmune disorders.
“As was the case last year, it was a privilege to be able to ask questions of the top practitioners in such a complex field of medicine who give so much of their time and are eager to learn from us as well. There is such a sense of caring in this organization. I could feel it right through my computer screen! I floated on all I gained for days!!” -Laurie Sunshine, Maryland, USA
The energy and excitement of those attending in Los Angeles, California, was palpable after a two-year hiatus. That energy was mirrored by the online participants, with people logging in from their homes across the world. By offering a hybrid event, the 2022 RNDS was even more accessible and inclusive for the SRNA community and included participants from a combined total of ten different countries.
The first day began with a welcome from SRNA President Sandy Siegel and Dr. Benjamin Greenberg of the University of Texas Southwestern, followed by Panel presentations on the diagnosis and treatment of ADEM, AFM, MOGAD, NMOSD, and TM. Sandy shared the history of SRNA, formerly the Transverse Myelitis Association, the collaborative approach of the association, the research and clinical care being done by medical professionals, and the importance of education to support the rare neuroimmune community. Dr. Greenberg emphasized the importance of bringing the community of all the disorders together under one big tent: “There’s a lot we can learn from each other, regardless of the letters that come with our diagnosis”. Five SRNA community members shared their personal experiences: Chantal Banks, Hannah Stadler, Emily Martin, Jodi Arminio, and Sarah Mendenhall. The expert panel asked each person about their pathway to diagnosis, questions about which differential diagnoses were considered, and the approach their providers offered related to treatments. These panelists included Dr. Eoin Flanagan, Dr. Grace Gombolay, Dr. Benjamin Greenberg, Dr. Michael Levy, and Dr. Carlos Pardo.
“Day 1 of the SRNA RNDS brought a surprisingly emotional response from me. I must admit, it caught me off guard. I knew right then that I had found my people. Listening to people who had similar stories as myself and a lot of overlapping symptoms between each diagnosis validated how I have been feeling and provided comfort in knowing I am not alone. The experts truly are just that. They are very knowledgeable, and while they continue to learn from us the patients, we too learn from their expertise. A huge thank you to SRNA and everyone who brought us all together. It was an honor to meet Mr. Siegel in person. His passion, emotion, empathy, and genuine care could be felt by all.” – Selena Gagnon, SRNA Peer Connect Leader, Ontario, CA
Day two of the 2022 RNDS included sessions covering long-term treatments and new clinical trials for NMOSD and MOGAD, research and management of symptoms including neuropathic pain and spasticity, and respiratory complications of AFM. These were followed by three tracks: the recently diagnosed experience, topics for those who have been diagnosed a year or more, and pediatric experiences. The day wrapped up with an open moderated panel session to discuss trending topics in rare neuroimmune disorders.
“The Siegel Rare Neuroimmune Association delivers what patients need to know year after year, and this year was no exception. As an advocacy organization for MOGAD, The MOG Project not only was able to learn a great deal and make invaluable connections to better contribute to our aligned missions, but as patients, we left fulfilled. This year, the brilliant addition of a presentation of patient stories to illustrate the similarities of all neuroimmune disorders put tears in our eyes and motivation to keep advocating in our hearts. Thanks to the SRNA for including us and allowing us to contribute to this great institution!” -Julie Lefelar, The MOG Project, Maryland, USA
The final day of the symposium began with information about the cognitive, mental health, and neuropsychological aspects of rare neuroimmune disorders. Dr. Christa Hutaff-Lee shared tools to help patients cope with grief, anxiety, and loss. Subsequent sessions addressed quality-of-life topics including bowel, bladder, and sexual dysfunction, adaptive tools, and information on how to navigate insurance. Attendees heard more community perspectives from people diagnosed with transverse myelitis during a panel conversation about disability moderated by Dr. GG deFiebre. The remaining sessions covered the latest in rare neuroimmune disorders research and a final Q&A session.
We are grateful to everyone who contributed to, attended, spoke at, and supported the 2022 Rare Neuroimmune Disorders Symposium. This event was made possible through the generosity and support of our sponsors Alexion – AstraZeneca Rare Disease, Genentech, Horizon Therapeutics, and the Kennedy Krieger Institute. Anyone can revisit the sessions from the 2022 RNDS here and 2022 Pre-RNDS here.
If you are interested in participating as a speaker or sponsor of our next symposium, please contact GG deFiebre at [email protected].