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Health : Medical Research (Grantmaking)

Familial Dysautonomia Foundation

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

impact data icon

Impact Information is available from our partner, GuideStar

four stars

94.25

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 94.25 four stars
  Financial 91.88 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 08/01/2019 and includes data from FY2017, the most recent 990 received at that time.

The Familial 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 Familial 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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Reported Results
Showing 3 of 5
Total in 2018
Number of invitations for advocates to speak as experts
12
Number of volunteers
15
Number of groups/individuals benefiting from tools/resources/education materials provided
350
Number of clients served
1,500
Number of health outcomes improved
350
This impact information is current as of July 2019, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Financial

four stars

91.88

Accountability & Transparency

four stars

100.00

This rating was published 08/01/2019 and includes data from FY2017, 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)
88.9%
  Administrative Expenses 8.6%
  Fundraising Expenses 2.3%
  Fundraising Efficiency $0.04
  Working Capital Ratio (years) 1.08
  Program Expenses Growth 1.4%
  Liabilities to Assets < 0.1%
All data for Financial Performance Metrics calculations was provided by Familial Dysautonomia Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Familial Dysautonomia Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Familial Dysautonomia Foundation (NY) 94.25 four stars
Scleroderma Research Foundation (CA) 96.80 four stars
American Psychiatric Association Foundation (DC) 86.81 three stars
Macula Vision Research Foundation (PA) 86.25 three stars
Autism Research Institute (CA) 92.92 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $401,813
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $401,813
   Program Service Revenue $0
Total Primary Revenue $401,813
   Other Revenue $1,311,471
TOTAL REVENUE $1,713,284
   
EXPENSES  
   Program Expenses $2,173,254
   Administrative Expenses $208,559
   Fundraising Expenses $45,573
TOTAL FUNCTIONAL EXPENSES $2,427,386
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-714,102
   
Net Assets $2,077,052

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.

Due to an error on this organization's Form 990, we are unable to display program information.

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2017-12 08/01/2019 94.25 four stars
2017-12 04/01/2019 85.38 three stars
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, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$170,831 7.03% Paul Schack Executive Director
Other Salaries of Note
$32,614 1.34% Lanie Etkind Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
Familial Dysautonomia Foundation (NY) 94.25 four stars
Rheumatology Research Foundation (GA) 92.80 four stars
Steadman Philippon Research Institute (CO) 86.07 three stars
International Rett Syndrome Foundation (OH) 91.42 four stars
Children's Tumor Foundation (NY) 87.86 three stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Familial 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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