7 Years

On average, it takes 7 years to be diagnosed with SPS.

4-5 per 1MM

SPS affects 4-5 people out of a million.

Age 30-50

Age when symptoms most commonly develop.

5% of cases

Percentage of SPS cases reported in children.

Join the Fight to End SPS

Stiff Person Syndrome (SPS) is a neurological disease with autoimmune features. Usually progressive over time, SPS symptoms include severe muscle spasms, rigid limbs and body, debilitating pain, and chronic anxiety.

We're on a mission to END SPS!

Learn About SPS

Join the SPS Global Registry

The SPS Global Registry serves as a pivotal resource to unite the global community, centralize data, and help advance SPS research.

Join The Registry

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.

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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

RESEARCH SPOTLIGHT

The New England Journal of Medicine recently featured a two-part case study on SPS, a significant step in disseminating information widely across the medical community.

Read Now

Providing Hope for SPS Patients

Understanding
SPS

While SPS is a rare disease, more people are likely affected than reported due to misdiagnoses.

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The SPS
Global Registry

The SPS Global Registry and Natural History Study will improve our understanding of SPS.

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SPS Diagnostic
Criteria

This initiative will develop a clear definition of the criteria to diagnose SPS and its subtypes.

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SPS Publications
& Literature

From symptoms to diagnosis, from treatment to living with SPS, these are the resources you need.

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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.