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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!

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.

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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 1 - MARCH 25, 2025

Featuring: 
Tara Zier and Dr. Amanda Piquet

Kyverna is proud to sponsor our first podcast featuring Dr. Amanda Piquet, Celine Dion Foundation Endowed Chair and Director of the Autoimmune neurology program at the University of Colorado, and The SPSRF Founder, Tara Zier.

In their conversation, they debunk common misconceptions about Stiff Person Syndrome, share insights on the future of treatments, and provide tools and strategies for patients coping with SPS.

Providing Hope for SPS Patients

Understanding
SPS

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

Learn More

The SPS
Global Registry

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

Learn More

SPS Diagnostic
Criteria

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

Learn More

SPS Publications
& Literature

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

Learn More

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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.

PARTICIPATE

Participate in the SPS Global Registry.

Learn More

HOST

Host an SPSRF fundraiser to support research.

Ask Us How

SHARE

Share your SPS journey with the world.

Share Here

SIGN-UP

Sign-up for latest news about The SPSRF.

Sign Up

Support The SPSRF 

Support our mission to find a treatment and, ultimately, a cure for Stiff Person Syndrome by donating through our website.

 

Every donation directly contributes to advancing research, improving patient care, and providing hope to those affected by SPS.

Stiff Person Syndrome - In The News

Image by National Cancer Institute

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.

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