I am Jenna and I am hoping to bring awareness, more research and better treatments for the “One in a Million” autoimmune disease called Stiff Person Syndrome that has afflicted my Mom. It attacks the neurological system, causing spasms, stiffness and pain making it extremely difficult to walk. In a split second your body can stiffen up like a mannequin, causing a fall.

It’s so rare that many doctors have never heard of it. Diagnosis typically takes years. It can present in various parts of the body, affecting everyone differently. It is a Progressive Disease, which has caused my once very active mother to rely on a wheelchair to get around, due to her many falls.

On Sunday, April 24, 2022, I am running the Brooklyn Half Marathon as part of The Stiff Person Syndrome Research Foundation #Move4Rare initiative. I want to raise awareness of SPS and funds to promote education and sponsor research for a cure to SPS. You can join me by making a donation today.

 

Your donations help SPSRF sponsor research, build awareness, and promote education as we fulfill our mission to find better treatments and a cure for SPS.   

Stiff Person Syndrome (SPS) is a neurological disorder 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 likely affected than reported due to misdiagnosis. It takes on average seven years to identify and is often mistaken for Multiple Sclerosis, Parkinson’s Disease, 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.

The Stiff Person Syndrome Research Foundation is on a mission to change that. Join us.