Causes: Health, Nerve, Muscle & Bone Diseases, Neurology & Neuroscience Research, Specifically Named Diseases, Specifically Named Diseases Research

Mission: 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.

Target demographics: patients with Stiff Person Syndrome (SPS), or who are enduring the odyssey of diagnosis in the rare disease space. (The average time to diagnosis for SPS is 7 years, by which time many patients are fully disabled, wheelchair-bound, or bed-ridden. )

Programs: a Patient Contact Registry and Natural History Study (PCR/NHS), directly funding research into SPS, building awareness and community by sharing patient stories.