American Dystonia Society

Dystonia is a very complex, highly variable neurological movement disorder characterized by involuntary muscle contractions or spasms. An estimated 300,000 people in the United States have been diagnosed with Dystonia or awaiting proper diagnosis, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. It is a disorder that knows no age, ethnic, religious, sexual, or socioeconomic barriers – it can affect young children to older adults of all races, creeds, ethnicities, or social status. Dystonia results from abnormal functioning of the basal ganglia, a deep part of the brain which helps control coordination of voluntary movement and inhibition of involuntary movements. This region of the brain controls the speed and fluidity of movement and prevents unwanted movements. Because this important basal ganglia function is altered in Dystona patients, they experience simultaneous contractions of opposing muscle groups, resulting in abnormal postures, twisting or repetitive movements. These can affect any part of the body, including the hands, feet, arms, legs, trunk, neck, face, eyes and vocal cords. Symptoms may or not be obvious to the casual or even a trained observer. Depending on the affected body part, Dystonia can seriously impact daily functions. For example, if neck muscles are affected, a patient may have difficulty with balance, posture, chewing, or swallowing. In some cases, Dystonia may also be quite painful. Though not life-threatening, the involuntary nature of the disorder may be embarrassing, causing emotional distress or depression in some individuals. The American Dystonia Society has an on-line Dystonia networking site to provide peer support at ADS Community Center that can help address some of these issues, but patients may need to be treated separately for mental health issues caused by the challenges of coping with this disorder. American Dystonia Society (ADS) is dedicated to advancing Dystonia research, promoting patient advocacy and increasing public awareness of this debilitating disease. Our top priority is to maximize delivery of donations and grants to fund Dystonia Research in order to realize a cure and develop more effective diagnosis/medication/treatment protocols for Dystonia. ADS are dedicated to improving the quality of life for a person living with Dystonia. American Dystonia Society (ADS) will turn the foundation world upside down. We guarantee that at least 90% of all donations will go toward research and supporting awareness and advocacy. By using 21st Century tools, dedicated volunteers from the top down, and an innovative business model, ADS will reduce overhead costs to unheard of levels for a research foundation. Dystonia is the third most common movement disorder with over 300,000 diagnosed patients and possibly at least another 1,000,000 others that are undiagnosed or misdiagnosed. Yet Dystonia lags significantly behind in research funding when compared to other neurological disorders.