Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in May 2001.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
87 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
13 people listed on the 990; $306K paid to officers and key staff.
Theresa Strong’s $173K as Director of Research Progr is at the 66th percentile of top reported officer pay among 733 $1–10M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 4 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| John Walter | — | — | — | $242,434 | $251,636 |
| Theresa Strong | $173,430 | $168,974 | $158,830 | $146,847 | $135,085 |
| Susan Hedstrom | $132,351 | $129,671 | $73,353 | $64,433 | $73,132 |
| Nathalie Kayadjanian | — | — | — | — | $120,916 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
See Foundation for Prader Willi Research executive salaries →On this list? Claim this org
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Funds research to improve understanding and treatment of Prader-Willi Syndrome.
Questions for Foundation for Prader Willi Research
Your first name shows with your question. Foundation for Prader Willi Research answers here, for everyone.
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Through the implementation of translational research programs, the management of a world-class grants program, and the development of prader willi syndrome (PWS) research tools, the foundation for prader-willi research (FPWR) advances research in order to develop new treatments for PWS and improve the health and well-being of those with…
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $8.9M | $7.6M |
| InvestmentsLn 11–13 | $378K | $501K |
| Land, buildings, equipmentLn 10c | $4K | $5K |
| Total assetsLn 16 | $9.5M | $8.9M |
| LiabilitiesLn 26 | $4.2M | $3.5M |
| Net assetsLn 32 | $5.3M | $5.4M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $2.6M | $2.6M | ||
| Grants and assistance to foreign recipientsLn 3 | $816K | $816K | ||
| Pay of current officers, directors and key staffLn 5 | $132K | $94K | $12K | $26K |
| Other salaries and wagesLn 7 | $952K | $680K | $85K | $188K |
| Other employee benefitsLn 9 | $13K | $4K | $926 | $8K |
| Payroll taxesLn 10 | $84K | $62K | $5K | $18K |
| Legal feesLn 11b | $2K | $2K | ||
| Accounting feesLn 11c | $83K | $83K | ||
| Other fees for servicesLn 11g | $543K | $435K | $89K | $19K |
| Advertising and promotionLn 12 | $1K | $680 | $560 | |
| OccupancyLn 16 | $54K | $48K | $6K | |
| TravelLn 17 | $74K | $61K | $5K | $9K |
| Depreciation, depletion and amortizationLn 22 | $2K | $2K | ||
| InsuranceLn 23 | $29K | $20K | $9K | |
| Other expenses (24a–d)Ln 24 | $591K | $466K | $96K | $29K |
| All other expensesLn 24e | $87K | $18K | $11K | $59K |
| Total functional expensesLn 25 | $6.1M | $5.3M | $396K | $362K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $6.2M | $6.1M | $111K | $5.4M | 990 PDF |
| FY2023 | $6.5M | $6.4M | $183K | $5.3M | 990 PDF |
| FY2022 | $5.1M | $5.1M | −$5K | $5.1M | 990 PDF |
| FY2021 | $3.8M | $3.1M | $689K | $5.3M | 990 PDF |
| FY2020 | $3.7M | $3.1M | $602K | $4.4M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $6,173,660 revenue, 12 lines filed
Part VI · Governance 11 of 11 board members independent, no flags
Part VIII · Statement of revenue $6,173,660 across 8 lines filed
Part IX · Statement of functional expenses $6,062,339 across 16 lines filed
Part X · Balance sheet $8,871,895 assets, 14 lines filed
Part XI · Reconciliation of net assets $5,391,322 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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