Advancing research for more treatments and ultimately a cure, promoting awareness and education, and supporting the needs and well being of affected individuals and families.
Real LifeEvery story matters - your story, their story, our story…
Stephanie, an outgoing, athletic teen with a bright perspective on life, was diagnosed with idiopathic early onset generalized dystonia at the age of 18. Because of the severity of her symptoms, it was recommended that she undergo deep brain stimulation (DBS) surgery. Following surgery, Stephanie was ecstatic and thinking about all the possibilities in her future; of getting out of her wheelchair, or walking, and even going back to competitive swimming, an activity she enjoyed before dystonia entered her life.
Several months later, a dystonia storm struck, forcing doctors to put her in a medically-induce coma to help calm her tremors and spasms. Intensive physical therapy followed and her condition improved until another dystonia storm struck. Since the second storm, Stephanie is no longer able to sit upright and is forced to use a back and neck brace so as not to arch out of her wheelchair. Many things have changed for Stephanie. But, what hasn't changed is her perseverance and hope for a better future, one free of dystonia. Every story, Stephanie's story, our story, and the stories of more than 300,000 men, women, and children affected by dystonia have been bound into a book that is waiting for an ending.
Help us close the book on dystonia - help us find a cure.
On behalf of all who are affected by dystonia and their families, thank you for your support.