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Health : Diseases, Disorders, and Disciplines

National Fragile X Foundation

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four stars

93.33

2100 M Street, NW Suite 170, Box 302
Washington, DC 20037
tel: (800) 688-8765   Web Site
EIN: 84-0960471

Board Leadership
Brian Silver
President

CEO
Linda Sorensen
Executive Director

  Score
(out of 100)
Rating
Overall Score & Rating 93.33 four stars
  Financial 91.46 four stars
  Accountability & Transparency 96.00 four stars
This rating was published 03/01/2018 and includes data from FY2016, the most recent 990 received at that time.

The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X. Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene. Fragile X includes: fragile X syndrome, fragile X-associated tremor/ataxia syndrome, and fragile X-associated primary ovarian insufficiency.

The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X. Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene. Fragile X includes: fragile X syndrome, fragile X-associated tremor/ataxia syndrome, and fragile X-associated primary ovarian insufficiency.

Financial

four stars

91.46

Accountability & Transparency

four stars

96.00

This rating was published 03/01/2018 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)
81.4%
  Administrative Expenses 14.7%
  Fundraising Expenses 3.8%
  Fundraising Efficiency $0.05
  Working Capital Ratio (years) 0.62
  Program Expenses Growth 4.0%
  Liabilities to Assets 5.6%
All data for Financial Performance Metrics calculations was provided by National Fragile X Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by National Fragile X Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
National Fragile X Foundation (DC) 93.33 four stars
Cerebral Palsy (WI) 88.50 three stars
The Progeria Research Foundation (MA) 94.88 four stars
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 93.82 four stars
Prader-Willi Syndrome Association (USA) (FL) 85.60 three stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,291,104
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $165,729
   Related Organizations $0
   Government Grants $0
Total Contributions $1,456,833
   Program Service Revenue $487,266
Total Primary Revenue $1,944,099
   Other Revenue $8,697
TOTAL REVENUE $1,952,796
   
EXPENSES  
   Program Expenses $1,249,421
   Administrative Expenses $254,236
   Fundraising Expenses $78,568
TOTAL FUNCTIONAL EXPENSES $1,582,225
   
Payments to Affiliates $0
Excess (or Deficit) for the year $370,571
   
Net Assets $1,007,537

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
Education & Support $776,962 62.2%
Research Grants $330,298 26.4%
Community Support Network $90,282 7.2%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2016-12 03/01/2018 93.33 four stars
2015-12 03/01/2017 84.27 three stars
2014-12 06/01/2016 89.02 three stars
 
CN 2.0
2014-12 12/01/2015 91.51 four stars
2013-12 04/01/2015 82.92 three stars
2012-12 10/01/2013 92.76 four stars
2011-12 09/01/2012 81.23 three stars
2010-12 11/01/2011 87.73 three stars
2009-12 09/20/2011 --Donor Advisory

Prior to 9/1/2016, Charity Navigator issued Advisories under the name CN Watchlist and Donor Advisory. For more information on the CN Advisory system click here. This charity was issued a DA.

This donor advisory was published on Tuesday, September 20, 2011

In accordance with our policy for removing Donor Advisories, Charity Navigator  removed the Donor Advisory for the National Fragile X Foundation in November 2011 because  the organization filed an amended FYE 2010 Form 990 with the IRS which reports fundraising expenses.

Charity Navigator had published a Donor Advisory for this charity because we became aware of the following information in connection with this charity:

  • National Fragile X Foundation historically reported fundraising expenses on their Forms 990.  But its FYE 2010 Form 990 listed no fundraising expenses. Based on our experience, charities only rarely are able to raise substantial sums of money without incurring any associated fundraising costs. We reached out to National Fragile X Foundation for clarification, but did not received an adequate explanation. We were therefore unable to evaluate National Fragile X Foundation and thus issued a Donor Advisory. 
 
CN 1.0
2009-12 10/01/2010 83.57 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 84-0960471
Name in IRS Master File NATIONAL FRAGILE X FOUNDATION
NTEE Code H20
NTEE Classification Birth Defects, Genetic Diseases Research
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (161) Scientific research (diseases)
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 Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date August, 1983
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
$135,971 8.59% Tony Ferlenda CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
National Fragile X Foundation (DC) 93.33 four stars
National Down Syndrome Society (NY) 86.97 three stars
The Progeria Research Foundation (MA) 94.88 four stars
Prader-Willi Syndrome Association (USA) (FL) 85.60 three stars
United Ability (AL) 96.14 four stars

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Charity Contact Info

National Fragile X Foundation
2100 M Street, NW
Suite 170, Box 302
Washington, DC 20037
tel: (800) 688-8765
fax: (925) 938-9315
EIN: 84-0960471

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Board Leadership

Brian Silver
President

CEO

Linda Sorensen
Executive Director

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