American Dystonia Society, Inc.

Princeton Juntion, NJ   |  www.dystonia.us
This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.
This organization's exempt status was automatically revoked by the IRS for failure to file a Form 990, 990-EZ, 990-N, or 990-PF for 3 consecutive years. Further investigation and due diligence are warranted.

Mission

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.

Ruling year info

2010

Principal Officer

Mr Noel Valero

Main address

17 Suffolk Ln

Princeton Juntion, NJ 08550 USA

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EIN

27-1254291

NTEE code info

Neurology, Neuroscience (G96)

Fund Raising and/or Fund Distribution (T12)

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

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.

Population(s) Served

Where we work

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Financials

American Dystonia Society, Inc.

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Operations

The people, governance practices, and partners that make the organization tick.

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American Dystonia Society, Inc.

Board of directors
as of 10/10/2013
SOURCE: Self-reported by organization
Board chair

Mr Noel Valero

No Affiliation

Term: Nov 2019 - Nov 2029

Noel Valero Executive Director and President

No Affiliation

Christopher Walsh Director

Harvard Medical School

Rosemary Flynn Director of Information Research

No Affiliation

Michele Weber Director of Corporate Outreach

No Affiliation

Nora Ortiz Director of Communications and Hispanic Outreach

No Affiliation