Prader-Willi Syndrome Association (USA) meets the 20 Standards for Charity Accountability.
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Year, State Incorporated
1977, MN
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Stated Purpose
"to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome."
Prader-Willi Syndrome Association (USA) (PWSA) works to provide to parents and professionals with a national and international network of information, support services and research endeavors that expressly meet the needs of children and adults affected by Prader-Willi syndrome. Programs include medical, crisis, and family support; research; parent mentoring; behavioral management; education and awareness; legislative and policy advocacy; and information and resources for individuals, families, physicians, scientists, providers, and other professionals. In addition, the organization holds a biennial conference for professionals and parents designed to share new approaches in dealing with the syndrome.
For the year ended December 31, 2017, Prader-Willi Syndrome Association (USA)'s program expenses were:
Crisis intervention and support |
$701,724 |
National conference |
$482,623 |
Advocacy, awareness, external collaborative relationships |
$322,562 |
New diagnosis support |
$318,736 |
Research |
$268,812 |
Education |
$119,143 |
Medical intervention and support |
$115,555 |
Chapter affiliate and local support |
$112,418 |
Total Program Expenses: |
$2,441,573 |
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Chief Executive
Steve Queior, Chief Executive Officer
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Compensation*
$90,000
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Chair of the Board
James Kane
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Chair's Profession / Business Affiliation
Retired Real Estate Executive
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Board Size
14
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Paid Staff Size
16
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Membership appeals, Planned giving arrangements, Telephone appeals, Cause- related marketing (affinity credit cards, consumer product sales, etc.)
Fundraising costs were 9% of related contributions. (Related contributions, which totaled $1,847,030, are donations received as a result of fundraising activities.)
This organization is tax-exempt under section 501(c) (3) of the Internal Revenue Code.It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on Prader-Willi Syndrome Association (USA)'s audited financial statements for the year ended December 31, 2017.
Source of Funds |
Donated services |
$859,743 |
Contributions |
$685,879 |
Conference income |
$333,863 |
Fundraising contributions |
$301,408 |
Investment income, net |
$119,959 |
Membership dues |
$30,330 |
Educational material sales |
$8,314 |
Total Income |
$2,339,496 |
- Programs: 84%
- Administrative: 11%
- Fundraising: 5%
Total Income |
$2,339,496 |
Program expenses |
$2,441,573 |
Fundraising expenses |
$170,579 |
Administrative expenses |
$322,351 |
Other expenses |
$0 |
Total expenses: |
$2,934,503 |
Income in Excess of Expenses |
$-595,007 |
Beginning Net Assets |
$2,363,181 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$1,768,174 |
Total Liabilities |
$306,014 |
Total Assets |
$2,074,188 |
Note: As reported in the organization's audited financial statements for the year ended December 31, 2017, PWSA received in-kind donations totaling $859,743 in the form of contributed services.