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For more than four decades, I lived a full, vibrant, non-stop life. I moved with purpose. I built businesses. I poured my heart into children and families. I traveled the world with my husband. I lived at a pace that felt limitless—until the day life shifted, and everything I knew about my body and my strength changed.
Being diagnosed with AQP4-positive Neuromyelitis O...
By Lynda Spencer
February is Rare Disease Month, and on February 28, people across the globe will unite for Rare Disease Day. This year marks the 18th annual observance as coordinated by ...
By Lyd Lacey
The Paralympics start in two weeks. Here’s everything you should know.
What are the Paralympics?
The Paralympics are, simply put, the Olympics for disabled athletes. There is both a summer and a winter version. The summer Paralympics have twenty-seven sports: archery, athlet...
The Siegel Rare Neuroimmune Association is excited to announce that we have extended the Centers of Excellence in Rare Neuroimmune Disorders (CERND) designation to four additional medical centers: Children’s National Hospital in Washington, DC, Cincinnati Children’s Hospital Medical Center, Koç University Scho...
We’re pleased to share that Dr. Gabrielle (GG) deFiebre is taking on the role of Executive Director. GG has been part of SRNA for 12 years, and she brings both deep program experience and lived experience as someone diagnosed with transverse myelitis.
After 14 years as Executive Director, Chitra Krishnan is transitioni...