Basic Organization Information
American Dystonia Society, Inc.
- Physical Address:
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Princeton Juntion, NJ
08550 1217
- EIN:
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27-1254291
- Web URL:
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www.dystonia.us
- NTEE Category:
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G Disease, Disorders, Medical Disciplines
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G96 Neurology, Neuroscience
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T Philanthropy, Voluntarism, and Grantmaking
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T12 Fund Raising and/or Fund Distribution
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H Medical Research
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H80 Specifically Named Diseases Research
- Ruling Year:
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2010
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Mission Statement
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.
Financial Statements
Audited Financial Statement is not available for this organization.
Leadership
Mr Noel Valero
Term:
Since
Nov
2010
Profile:
Graduated Magna cum Laude, Princeton University, 1982 BSE Mechanical and Aerospace Engineering.
Master of Science Engineering, Princeton University, 1986 Mechanical and Aerospace Engineering.
Mechanical Systems Manager responsible for $500M Interplanetary Spacecraft and 5 Systems Engineers and 25 Design engineers.
President and Owner of IT Consulting Company from 1996 to 2008 when dystonia forced cessation of work activities.
Leadership Statement:
Our call for volunteers has had tremendous response. When we got into full swing in Spring 2010, we have become a major presence in the Dystonia research and advocacy world. We have started national teleconference based support groups that enable people with dystonia (most of whom are unable to travel alone) to get peer support that is relevant to life with Dystonia. Our philosophy is both innovative and compassionate. We will vest our volunteers with the autonomy to work with minimal direction from the ADS as long as they follow our mission statement. Our intent is not to solicit donations from fellow Dystonians, although voluntary unsolicited donations will be accepted. Rather, we ask our fellow Dystonians to share their passion and compassion by volunteering their time and energy to help others. Furthermore, our pledge is 100 percent of every dollar collected from external public and private donations and grants will go toward research, awareness, and patient support. We will not waver in that guarantee as we keep our overhead low and covered by our founder.
Officers for Fiscal Year
Officers information is not available for this organization.
Highest Paid Employees & Their Compensation
Highest Paid Employee data is not available for this organization.
Program:
ADS National Teleconference Support Initiative
- Budget:
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$0
- Category:
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Diseases, Disorders & Medical Disciplines
- Population Served:
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General Public/Unspecified
Program Description:
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.
Program Long-Term Success:
Program Short-Term Success:
Program Success Monitored by:
Program Success Examples:
Impact Summary from the Nonprofit
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.