American Dystonia Society, Inc.
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
ADS National Teleconference Support Initiative
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 grouthere 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.
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Operations
The people, governance practices, and partners that make the organization tick.
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Connect with nonprofit leaders
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American Dystonia Society, Inc.
Board of directorsas of 10/10/2013
Mr Noel Valero
No Affiliation
Term: 2019 - 2029
Noel Valero
No Affiliation
Christopher Walsh
Harvard Medical School
Rosemary Flynn
No Affiliation
Michele Weber
No Affiliation
Nora Campos Ortiz
No Affiliation