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Health : Diseases, Disorders, and Disciplines

Prader-Willi Syndrome Association (USA)

Saving & Transforming Lives

three stars

88.00

8588 Potter Park Drive Suite 500
Sarasota, FL 34238
tel: (800) 926-4797   Web Site
EIN: 41-1306908

Board Leadership
James Kane
Chair

CEO
Steve Queior
Chief Executive Officer

  Score
(out of 100)
Rating
Overall Score & Rating 88.00 three stars
  Financial 92.08 four stars
  Accountability & Transparency 85.00 three stars
This rating was published 06/01/2020 and includes data from FY2018, the most recent 990 received at that time.

Organized in 1975, Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi syndrome (PWS), their families, and interested professionals. To provide information, education, and support services to its members, PWSA offers: a toll-free telephone number for information and referrals; a bimonthly newsletter, The Gathered View; publications and audiovisual presentations about PWS; an annual national conference for families and professionals; a nationwide network of local chapters, parents, and professionals; research funding to expand knowledge and treatment options; and representation on the international level. PWS is a complex non-hereditary birth defect resulting from an abnormality on the 15th chromosome.

Organized in 1975, Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi syndrome (PWS), their families, and interested professionals. To provide information, education, and support services to its members, PWSA offers: a toll-free telephone number for information and referrals; a bimonthly newsletter, The Gathered View; publications and audiovisual presentations about PWS; an annual national conference for families and professionals; a nationwide network of local chapters, parents, and professionals; research funding to expand knowledge and treatment options; and representation on the international level. PWS is a complex non-hereditary birth defect resulting from an abnormality on the 15th chromosome.

Impact Information

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This impact information is current as of August 2020, 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

92.08

Accountability & Transparency

three stars

85.00

This rating was published 06/01/2020 and includes data from FY2018, 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)
82.9%
  Administrative Expenses 11.7%
  Fundraising Expenses 5.3%
  Fundraising Efficiency $0.06
  Working Capital Ratio (years) 0.93
  Program Expenses Growth 4.2%
  Liabilities to Assets 9.3%
All data for Financial Performance Metrics calculations was provided by Prader-Willi Syndrome Association (USA) on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Prader-Willi Syndrome Association (USA) on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Prader-Willi Syndrome Association (USA) (FL) 88.00 three stars
National Fragile X Foundation (VA) 86.92 three stars
The Progeria Research Foundation (MA) 91.57 four stars
The Cornelia de Lange Syndrome Foundation (CT) 96.66 four stars
MiracleFeet (NC) 96.99 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,087,289
   Federated Campaigns $0
   Membership Dues $29,425
   Fundraising Events $93,283
   Related Organizations $0
   Government Grants $0
Total Contributions $1,209,997
   Program Service Revenue $0
Total Primary Revenue $1,209,997
   Other Revenue $51,661
TOTAL REVENUE $1,261,658
   
EXPENSES  
   Program Expenses $1,007,739
   Administrative Expenses $141,534
   Fundraising Expenses $74,689
TOTAL FUNCTIONAL EXPENSES $1,223,962
   
Payments to Affiliates $0
Excess (or Deficit) for the year $37,696
   
Net Assets $1,659,294

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
Crisis & Intervention Training $423,672 42.0%
Distribution of Educational Materials $229,642 22.8%
Conference for Professionals and Parents $57,724 5.7%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-12 06/01/2020 88.00 three stars
2017-12 10/01/2019 83.93 three stars
2017-12 05/01/2019 84.42 three stars
2016-12 03/01/2018 85.60 three stars
2015-12 05/01/2017 88.23 three stars
2014-12 06/01/2016 86.40 three stars
 
CN 2.0
2014-12 12/22/2015 79.89 two stars
2013-12 12/22/2014 80.58 three stars
2012-12 11/01/2014 81.29 three stars
2012-12 12/01/2013 80.23 three stars
2011-12 02/01/2013 89.90 three stars
2010-12 04/01/2012 84.94 three stars
2009-12 09/20/2011 89.15 three stars
 
CN 1.0
2009-12 04/01/2011 85.04 three stars
2008-12 04/01/2010 98.25 four stars
2007-12 12/17/2008 89.97 three stars
2006-12 11/01/2007 85.98 three stars
2005-12 12/01/2006 91.79 four stars
2004-12 12/01/2005 83.58 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 41-1306908
Name in IRS Master File PRADER-WILLI SYNDROME ASSOCIATION
NTEE Code [Not Provided by IRS]
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (125) Giving information or opinion (see also Advocacy)
(120) Publishing activities
(160) Aid to the handicapped (see also 031)
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 September, 1977
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
$91,117 7.44% Stephen Queior Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
Prader-Willi Syndrome Association (USA) (FL) 88.00 three stars
The Cornelia de Lange Syndrome Foundation (CT) 96.66 four stars
The Progeria Research Foundation (MA) 91.57 four stars
MiracleFeet (NC) 96.99 four stars
Alpha-1 Foundation (FL) 93.26 four stars

Compare These Charities (Highly Rated)

This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive
Suite 500
Sarasota, FL 34238
tel: (800) 926-4797
fax: (941) 312-0142
EIN: 41-1306908

Visit Web Site

Board Leadership

James Kane
Chair

CEO

Steve Queior
Chief Executive Officer

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