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Health : Medical Research (Grantmaking)

Dysautonomia Foundation

59 years of care, treatment, research and advocacy for the FD population

three stars

86.64

315 West 39th Street Suite 701
New York, NY 10018
tel: (212) 279-1066   Web Site
EIN: 13-6145280

Board Leadership
Faye Ginsburg
President

CEO
Lanie Etkind
Executive Director

  Score
(out of 100)
Rating
Overall Score & Rating 86.64 three stars
  Financial 88.53 three stars
  Accountability & Transparency 85.00 three stars
This rating was published 05/01/2018 and includes data from FY2016, the most recent 990 received at that time.

The Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care and scientific research for the benefit of people afflicted with Familial dysautonomia (FD). The Foundation also conducts social service and public awareness programs for the benefit of the FD community and for those in the general population who may be at risk for FD. FD is a rare genetic disease that affects the autonomic and sensory nervous systems of children from birth. The most striking symptoms of FD are reduced sensitivity to pain and temperature, and the inability to produce tears. But FD is much more than 'no pain and no tears', it affects every major system of the body, causing severe respiratory, cardiac, orthopedic, digestive and vision problems.

The Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care and scientific research for the benefit of people afflicted with Familial dysautonomia (FD). The Foundation also conducts social service and public awareness programs for the benefit of the FD community and for those in the general population who may be at risk for FD. FD is a rare genetic disease that affects the autonomic and sensory nervous systems of children from birth. The most striking symptoms of FD are reduced sensitivity to pain and temperature, and the inability to produce tears. But FD is much more than 'no pain and no tears', it affects every major system of the body, causing severe respiratory, cardiac, orthopedic, digestive and vision problems.

Impact Information

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Financial

three stars

88.53

Accountability & Transparency

three stars

85.00

This rating was published 05/01/2018 and includes data from FY2016, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
89.4%
  Administrative Expenses 8.1%
  Fundraising Expenses 2.3%
  Fundraising Efficiency $0.02
  Working Capital Ratio (years) 1.49
  Program Expenses Growth -1.0%
  Liabilities to Assets < 0.1%
All data for Financial Performance Metrics calculations was provided by Dysautonomia Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Dysautonomia Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Dysautonomia Foundation (NY) 86.64 three stars
Dystonia Medical Research Foundation (IL) 88.66 three stars
The Hastings Center (NY) 89.53 three stars
Vascular Cures (CA) 87.25 three stars
Scleroderma Research Foundation (CA) 97.17 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,249,304
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $350,380
   Related Organizations $0
   Government Grants $4,000
Total Contributions $1,603,684
   Program Service Revenue $0
Total Primary Revenue $1,603,684
   Other Revenue $116,238
TOTAL REVENUE $1,719,922
   
EXPENSES  
   Program Expenses $1,434,735
   Administrative Expenses $146,211
   Fundraising Expenses $45,731
TOTAL FUNCTIONAL EXPENSES $1,626,677
   
Payments to Affiliates $0
Excess (or Deficit) for the year $93,245
   
Net Assets $2,791,154

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Dysautonomia Scientific & Clinical Research $858,982 59.9%
Dysautonomia Treatment $512,056 35.7%
Dysautonomia Public Education and Awareness Campaigns $50,177 3.5%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2016-12 05/01/2018 86.64 three stars
2015-12 04/01/2017 84.81 three stars
2014-12 06/01/2016 86.56 three stars
 
CN 2.0
2014-12 03/01/2016 85.98 three stars
2013-12 05/01/2015 84.58 three stars
2012-12 12/01/2013 89.12 three stars
2011-12 12/20/2012 87.41 three stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 13-6145280
Name in IRS Master File DYSAUTONOMIA FOUNDATION INC
NTEE Code G50
NTEE Classification Nerve, Muscle and Bone Diseases
NTEE Type Diseases, Disorders, Medical Disciplines
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (927) Fundraising
Foundation Status Organization that normally receives no more than one-third of its support from gross investment income and unrelated business income and at the same time more than one-third of its support from contributions, fees, and gross receipts related to exempt purposes.  509(a)(2)
Deductibility Contributions are deductible
Affiliation Central - the organization is a parent (group ruling) and is not a church or 501(c)(1) organization.
Group Name DYSAUTONOMIA FOUNDATION INC
Ruling Date October, 1976
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
  • December, 2012

The data displayed in this profile is provided by the IRS for free in the form of Publication 78 and the Business Master File (BMF).

Compensation % of Expenses Paid to Title
Not compensated -- Lanie Etkind Executive Director
Other Salaries of Note
$133,551 8.21% Paul Schack Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
Dysautonomia Foundation (NY) 86.64 three stars
Children's Tumor Foundation (NY) 90.25 four stars
Rett Syndrome Research Trust (CT) 85.85 three stars
Monell Chemical Senses Center (PA) 86.45 three stars
Rheumatology Research Foundation (GA) 92.22 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Dysautonomia Foundation
315 West 39th Street
Suite 701
New York, NY 10018
tel: (212) 279-1066
fax: (212) 279-2066
EIN: 13-6145280

Visit Web Site

Board Leadership

Faye Ginsburg
President

CEO

Lanie Etkind
Executive Director

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