American Dystonia Society, Inc. Overview
The concerns with Dystonia support groups have been with frequency and relevancy. Our support netwok addresses these issues by holding one hour sessions at least every other week. The three or more months between meetings, typical of more traditional format support groups, is too long between meetings, especially when one of the biggest issues for Dystonians' is being alone and isolated. Travel is also an issue, with many people living as far as 2 hours or more from the closest support group. Many of us cannot drive let alone travel comfortably in cars. By making the support groups teleconference and internet based, there is no need to travel nor impose that demand on friends and family. For those who find it easier to type than talk, we will have a chat room available for some meetings.
The relevancy of discussions offered at traditional support groups will be addressed. Some people have sat through meetings that were irrelevant to their needs. We will have a full range of topics relevant to the Dystonia Community and patients participate only in the ones of interest.
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 is dedicated to improving the quality of life for a person living with Dystonia.
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