Celebrating SRNA’s 29th Anniversary
This year marks 29 years of the Siegel Rare Neuroimmune Association (SRNA). We are a not-for-profit international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM). In a recent blog, SRNA President Sandy Siegel reflected on the life of his wife Pauline and remembered the early days of the organization. “Pauline changed the world for people who have been diagnosed with one of these disorders and for anyone who will get these diagnoses in the future. We recognize July as the birth of The Transverse Myelitis Association. We do so to remember how and why this organization was established, and we do so to honor Pauline’s memory. We’ve always been advocates for people with ADEM and NMOSD–from the beginning. AFM and MOGAD are relatively newly discovered disorders and we immediately included them under our umbrella. To be clear, our members also include people who have had spinal strokes, radiation myelopathies, Lupus, various direct infections of the central nervous system, related autoimmune disorders such as Sarcoidosis and Sjogren’s, different cancers of the spinal cord, and all sorts of other central nervous system maladies where people don’t have a home. We have become their home.” You can read Sandy’s full blog here. In the past year, we have funded critical research projects that have led to promising breakthroughs in treatment and understanding of these conditions. Our educational initiatives have reached a wider audience, providing invaluable resources and support to people diagnosed, care partners, and healthcare professionals alike. Additionally, we strengthened our support network, offering vital assistance and guidance to those navigating the complexities of rare neuroimmune diseases. See what some of our community members have had to say about our work: “I have to commend SRNA for the amount of information they have on hand to help people who have been so negatively affected by such rare and problematic diseases. Thank you for giving me the opportunity to help others.” -SRNA Peer Connect Leader “It was great to have the opportunity to communicate one-on-one with other attendees. And it was great to be able to listen to the “Ask the Experts” section when I had the time to do so.” -NMOSD Together attendee “With extreme paralyzing pain leaving me spending most of my day in bed, I turned to the internet. I searched “#transversemyelitis” on Instagram, found the SRNA, and things started going in a better direction. I found videos from a physiotherapist at an SRNA conference, and she said the most important thing to have in your evidence-based physiotherapy rehab was hope. I was able to attend an online meetup where I met other people who have been impacted by rare, life-changing medical conditions.” -Laura Murray, SRNA community member “I just want to extend extreme gratitude to your program and all the work of advocacy, community building, and most importantly providing information! Thank you. It has really helped with my processing through these beginning stages of diagnosis.” -SRNA community member In honor of our 29th anniversary, we’re dedicating the entire month of August to sharing about our work over the last year. We encourage you to participate in our 2023 Anniversary Campaign and invite you to make a gift of any size to help us continue our efforts to improve the quality of life, support research efforts, and find a cure for rare neuroimmune disorders. Thank you for being a driving force in our mission and celebrating our 29th Anniversary with us! Together, we can create a brighter and more hopeful future for all those affected by these challenging conditions.
