Nonprofit Report for American Dystonia Society, Inc.

GuideStar Summary

	GuideStar Exchange	Organization has not reached a GuideStar Exchange Participation Level This organization is a GuideStar Exchange participant, demonstrating its commitment to transparency. Is this your nonprofit? Update your information today!
	Registered with IRS	Legitimacy information is available
	Financial Data	Organization has not reported Revenue & Expense data to GuideStar
	Mission Objectives	Mission Statement is available
	Impact Summary	Impact Summary from the nonprofit is available
		Average rating from 12 Personal Reviews \| Write a Review

Basic Organization Information

American Dystonia Society, Inc. Organization Name provided in the GuideStar Exchange* as of 10/10/2013: American Dystonia Society, Inc. Organization Name as listed in the IRS Business Master File as of 06/09/2014: AMERICAN DYSTONIA SOCIETY * The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Physical Address:	Princeton Juntion, NJ 08550 1217
EIN:	27-1254291
Web URL:	www.dystonia.us
NTEE Category:	G Disease, Disorders, Medical Disciplines G96 Neurology, Neuroscience T Philanthropy, Voluntarism, and Grantmaking T12 Fund Raising and/or Fund Distribution H Medical Research H80 Specifically Named Diseases Research
Ruling Year:	2010

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.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses

Summary financial information has not been provided by the nonprofit. Click here if you are associated with this organization and want to provide this information.

Revenue & Expenses

Revenue and expense information has not been provided by the nonprofit. Click here if you are associated with this organization and want to provide this information.

Balance Sheet

Forms 990 Received from the IRS
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

Forms 990 Provided by the Nonprofit

Financial Statements

Audited Financial Statement is not available for this organization.

Annual Reports

Formation Documents
A Letter of Determination is a letter from the IRS to a nonprofit organization stating that the organization has successfully applied for tax-exempt status. In this document the IRS indicates under which section of the Internal Revenue Code an organization is qualified.

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Leadership (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

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.

Board Chair (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Board of Directors (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Officers for Fiscal Year (IRS Form 990)

Officers information is not available for this organization.

Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in October 2013

Click here if you are associated with this organization and want to provide updated information.

Programs

Program: ADS National Teleconference Support Initiative (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

Budget:: $0
Category:: Diseases, Disorders & Medical Disciplines
Population Served:: 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.

GuideStar Summary

Basic Organization Information

Mission Statement

Legitimacy Information

Annual Revenue & Expenses

Revenue & Expenses

Balance Sheet

Forms 990 Provided by the Nonprofit

Financial Statements

Annual Reports

Formation Documents A Letter of Determination is a letter from the IRS to a nonprofit organization stating that the organization has successfully applied for tax-exempt status. In this document the IRS indicates under which section of the Internal Revenue Code an organization is qualified.

Leadership (GuideStar Exchange,The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. October 2013)

Board Chair (GuideStar Exchange,The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. October 2013)

Board of Directors (GuideStar Exchange,The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. October 2013)

Officers for Fiscal Year (IRS Form 990)

Highest Paid Employees & Their Compensation (IRS Form 990)

Programs

Program: ADS National Teleconference Support Initiative (GuideStar Exchange,The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. October 2013)

Impact Summary from the Nonprofit

Reviews

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Formation Documents
A Letter of Determination is a letter from the IRS to a nonprofit organization stating that the organization has successfully applied for tax-exempt status. In this document the IRS indicates under which section of the Internal Revenue Code an organization is qualified.

Leadership (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

Board Chair (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

Board of Directors (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)

Program: ADS National Teleconference Support Initiative (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
October 2013)