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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.

 
Princeton Juntion, NJ

GuideStar Summary

&1002;                GuideStar Exchange Organization has not reached a GuideStar Exchange Participation Level ?
This organization is a GuideStar Exchange participant, demonstrating its commitment to transparency.

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Organization has not reported Revenue & Expense data to GuideStar
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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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 


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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.

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

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Balance Sheet

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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,
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October 2013)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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October 2013)

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Board Leadership Practices (GuideStar Exchange,
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October 2013)
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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

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

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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.

Reviews

Organization Data Available

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