The Stiff Person Syndrome Research Foundation
Breaking through barriers to find a cure
What Is Stiff Person Syndrome?
Imagine a full body Charley horse that stops you in your tracks.
Stiff person syndrome (SPS) is a neurological disease with autoimmune features. Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Muscle spasms can be so violent they can dislocate joints and even break bones.
SPS is labeled as a rare disease. But more people are affected than reported due to misdiagnoses. It takes on average seven years to identify. It is often mistaken as Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic Illness, Anxiety, Phobia, and other autoimmune diseases.
Patients can be disabled, wheelchair bound or bed-ridden, unable to work and care for themselves.
If you have been diagnosed with SPS and tested positive for any of the neural antibodies (i.e., GAD65, Glycine receptor, DPPX, or amphiphysin), you could participate in the IGNITE study conducted at Stanford University.
This study aims to investigate the genetic predisposition to autoimmune neurological diseases with neural antibodies, diseases such as autoimmune encephalitis and SPS. While SPS and autoimmune encephalitis may have some common features, this does not mean that anyone with SPS has had or will have autoimmune encephalitis.
Your participation in this study is completely voluntary and there would be no cost to you to participate.
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“When people have full body spasms they are like a brick wall from top to bottom, and they freeze up. They don’t have the warning.”
Dr. Scott Newsome
Director, Stiff Person Syndrome Center
Johns Hopkins Hospital
Why the Urgency?
People are suffering right now.
We need your help.
The disease is often misdiagnosed for years.
We need more information.
Treatments available now don’t work well.
We need more research.
“Raising research funds for the autoimmune condition Stiff Person Syndrome is a deeply personal mission for me. I lost my mother, uncle, and aunt to the autoimmune disease MS. Finding treatments and a cure for SPS could open a world of possibilities for other devastating autoimmune disorders.”
About the Foundation
The Stiff Person Syndrome Research Foundation is a Maryland based nonstock corporation organized and operated exclusively for general charitable and educational purposes that satisfy the requirements of Section 501(c)(3) and 170(c)(2) of the Internal Revenue Code.
Our vision is that all people with Stiff Person Syndrome receive a prompt diagnosis, compassionate care, effective treatments, and a cure.
Our mission is to raise awareness of Stiff Person Syndrome (SPS), to support research for better treatments and a cure for SPS, while strengthening our community through education and collaboration.