Disease, Disorders, Medical Disciplines

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 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.

Main Programs

  1. ADS National Teleconference Support Initiative

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service areas

International

Self-reported by organization

ruling year

2010

chief executive for fy 2010

Mr Noel Valero

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Keywords

Dystonia spasmodic Torticollis Myoclonus Blepharospasm Oromandibular Cervical Writers Cramp Focal Generalized

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EIN

27-1254291

Physical Address

17 Suffolk Lane

Princeton Jct, NJ 08550 1217

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Impact statement

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.

Programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

Self-reported by organization

Program 1

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.

Category

Diseases, Disorders & Medical Disciplines

Budget

$0.00

Population Served

General Public/Unspecified

service areas

International

Self-reported by organization

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Financials

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Operations

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

American Dystonia Society, Inc.

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2011 and 2010
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
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CHIEF EXECUTIVE FOR FISCAL YEAR

Mr Noel Valero

BIO

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.

STATEMENT FROM THE CEO

"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."

Governance

BOARD CHAIR

Mr Noel Valero

No Affiliation

Term: Nov 2019 - Nov 2029

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

BOARD ORIENTATION & EDUCATION

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

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?