Florida · Nonprofit
PRADER-WILLI SYNDROME ASSOCIATION (USA)
PRADER-WILLI SYNDROME ASSOCIATION (USA) (Florida) receives grants from 67 organizations whose IRS filings report $3,071,028 to it, the largest being THE PITTSBURGH FOUNDATION ($676,650). 33 of them have funded it in more than one year, and 73% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $3.0M
- Funders on record
- 67
- Grants received
- $3.1M
- Net assets
- $3.5M
What Prader-Willi Syndrome Association (Usa) does
Mission
To enhance the quality of life and empower those affected by prader-willi syndrome.
As stated on its FY2025 Form 990.
Programs
Family support: pwsa/usa's family support team provides individuals diagnosed with prader-willi syndrome, their families, and care providers with critical information and resources on pws. We also provide education to medical providers, schools, and professional care givers through ongoing training, toolkits and other valuable resources. We support the family from nicu through all stages of the pws journey. In 2025, pwsa's family support team responded to 4,567 family support inquiries providing support to families in all 50 u.s. States and more than 20 different countries.
$858,901 spent$749,554 earned by the program39% of program spendingAdvocacy and awareness: increasing awareness and effectively advocating for prader-willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change for our loved ones.
$363,560 spent$298,208 earned by the program16% of program spendingResearch: pwsa/usa seeks to support research projects with the potential for immediate and high impact for the pws community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal. In 2025, pwsa paid out research and healthcare developments grants totaling $50,000 and received the findings from 2 of our grant funded projects.
$138,166 spentof which $50,000 as grants$23,200 earned by the program6% of program spendingNational convention and miscellaneous
$859,925 spent$1,047,634 earned by the program39% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $2,220,552.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $2.8M to $3.7M (+34%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2020 10% · 2021 9%. Grants only. Government contracts and fees sit inside program revenue.
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Stacy Ward
CEO
Board chair
Marguerite Rupnow
Chairman of the board
As listed on its FY2025 Form 990.
The chief executive listed changed between the FY2017 and FY2018, and between the FY2019 and FY2020 filings.
Who funds it, year by year
2017 → 2023: the base broadened from 18 funders to 20 funders, grant income rose $207k → $418k.
19 of 67 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 73% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of PRADER-WILLI SYNDROME ASSOCIATION (USA)’s funders (the co-funder graph). Top 30 of 67 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
PRADER-WILLI SYNDROME ASSOCIATION (USA) has a broad base — no single funder exceeds 22% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
75% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund PRADER-WILLI SYNDROME ASSOCIATION (USA).
Largest funder’s share by year: 2017 50% · 2018 31% · 2019 23% · 2020 28% · 2021 35% · 2022 44% · 2023 51% — broadly stable.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
31% of PRADER-WILLI SYNDROME ASSOCIATION (USA)'s funders are still giving 3 years after their first grant; 49% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
73% of PRADER-WILLI SYNDROME ASSOCIATION (USA)'s grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $824k that is directly attributable, 89% of it comes from funders outside Florida, across 26 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $2.2M arriving through sponsors registered in 14 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Government funding PRADER-WILLI SYNDROME ASSOCIATION (USA) receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $100 on record.
- DIRECT STATE SERVICES - NON-SALARY$100
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like PRADER-WILLI SYNDROME ASSOCIATION (USA)
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Florida
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
83% of spending goes to programs.
Governance
Public support
80%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for PRADER-WILLI SYNDROME ASSOCIATION (USA): IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds PRADER-WILLI SYNDROME ASSOCIATION (USA)?
- PRADER-WILLI SYNDROME ASSOCIATION (USA) (Florida) receives grants from 67 organizations whose IRS filings report $3,071,028 to it, the largest being THE PITTSBURGH FOUNDATION ($676,650). 33 of them have funded it in more than one year, and 73% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does PRADER-WILLI SYNDROME ASSOCIATION (USA) have?
- IRS filings report 67 organizations giving $3,071,028 in grants to PRADER-WILLI SYNDROME ASSOCIATION (USA), 33 of which have funded it in more than one year.
- Who is the largest funder of PRADER-WILLI SYNDROME ASSOCIATION (USA)?
- THE PITTSBURGH FOUNDATION is the largest funder on record, with $676,650 in grants. The full list of funders is on this page.
- How can an organization like PRADER-WILLI SYNDROME ASSOCIATION (USA) find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Florida. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 67 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing