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7 Years
On average, it takes 7 years to be diagnosed with SPS.
A few per 1MM
SPS affects only a few people out of a every one million.
Age 30-50
Age when symptoms most commonly develop.
5% of cases
Percentage of SPS cases reported in children.
Our Mission
The Stiff Person Syndrome Research Foundation envisions a world where all people with Stiff Person Syndrome (SPS) receive a prompt diagnosis, compassionate care, effective treatments, and a cure.
We exist to raise awareness of SPS and to support research for better treatments and a cure for SPS while strengthening our community through education and collaboration.
The SPSRF Podcast
EPISODE 2 - Jan 2026
Featuring:
Tara Zier and Dr. Scott Newsome
In this conversation, Dr. Scott Newsome discusses the significance of the SPS Global Registry, emphasizing the importance of patient-reported outcomes and longitudinal data in understanding Stiff Person Syndrome (SPS).
Dr. Newsome also addresses who can participate in the registry and the importance of capturing diverse patient experiences to inform future research and treatment options
Providing Hope for SPS Patients
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Get Involved
Join us in making a difference in the lives of those affected by Stiff Person Syndrome. Your involvement, whether through volunteering, donating, or spreading awareness, plays a crucial role in advancing research and finding a cure.
Stiff Person Syndrome - In The News
