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The Stiff Person Syndrome Research Foundation is now part of the @ChanZuckerbergInitiative’s #RareAsOne Network — a group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases!
Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries. We’re excited to join @ChanZuckerbergInitiative’s #RareAsOne Network to learn from and work with other patient-led organizations to accelerate progress on rare disease together.
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.
Scared Stiff
Emotional Trauma May Have Triggered Maryland Woman’s “Human Statue” Disease
WJLA-TV, Washington, D.C.
“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.
“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.”
Jacquie Naughton
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 Mission
Our mission is to raise awareness and funds for research to find better treatments and a cure for Stiff Person Syndrome.
Our Philosophy
Research
We need research for better treatments to improve the quality of life for those suffering with Stiff Person Syndrome.
Support
Patients and families of those suffering with this disabling condition need support.
Education
People need to be educated about this disease since it is often misdiagnosed and not as rare as once thought.
Advocacy
How to be a patient advocate is crucial in communicating with doctors who are not knowledgeable about this disease.