When Julie S. suddenly lost the ability to move her leg at a concert, she knew something was terribly wrong. What followed was a long, painful search for answers—until a rare diagnosis changed everything. In this honest and powerful account, Julie shares how Stiff Person Syndrome turned her life upside down—and how treatment, community, and resilience helped her find a new path forward. Read her story of strength, setbacks, and hope.

We’ve been counting down to this moment—and we’re thrilled to share everything you need to know about the biggest event of the year for the SPS community.

Here's everything you need to know going on at The SPSRF this month!

The SPSRF is proud to announce its support for increasing awareness and enrollment of Kyverna's groundbreaking clinical trial for SPS.

The Stiff Person Syndrome Research Foundation Celebrates Five Years of Milestones and Progress in SPS Research, Awareness, and Support.

Here’s what’s happening in November at The Stiff Person Syndrome Research Foundation:

For several months, I had difficulty putting on socks and shoes. I thought it was all due to my sedentary lifestyle, then, the spasms began.

National Academies report highlights recommendations to accelerate the approval of rare disease treatments.