Prader-Willi Syndrome Association (USA)
To enhance the quality of life and empower those affected by prader-willi syndrome.
Prader-Willi Syndrome Association (USA) at a glance
In short: Prader-Willi Syndrome Association (USA) gave $45K across 1 grant in 2025 (avg $45K), mostly in Illinois. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $45,000
- Grants made (2025)
- 1
- Average grant
- $45,000
- Median grant
- $45,000
- Total assets
- $3,636,718
- -1.1% vs 2024
- Primary geography
- Illinois (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Prader-Willi Syndrome Association (USA)
Open Grants
3 open opportunities from Prader-Willi Syndrome Association (USA)
Prader-Willi Syndrome Mini-Fellowship Grant
Prader-Willi Syndrome Association (USA)
Amount
Up to US $25,000
Deadline
Deadline not published
Prader-Willi Syndrome Research Grant - 12 Month Larger Grant
Prader-Willi Syndrome Association (USA)
Amount
Up to US $100,000
Deadline
Deadline not published
Prader-Willi Syndrome Research Grant - Individual and Rolling Basis Smaller Grant
Prader-Willi Syndrome Association (USA)
Amount
Up to US $25,000
Deadline
Deadline not published
Who Prader-Willi Syndrome Association (USA) funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was The Chicago School ($45K).
Grant Size Distribution
6 grants across all recorded years
The most common grant size was under $50K: 5 grants of 6 (83%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
Cities
How Prader-Willi Syndrome Association (USA) gives
- Giving fell 62% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $44K (2023) to $149K (2020). In 2025 it made 1 grant totaling $45K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Chicago School Chicago, IL | Education an Dhome Based Support | $45,000 |
Ready to take the next step with Prader-Willi Syndrome Association (USA)?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $3,636,718 | $3,014,155 | $2,681,770 | $45,000 | 1 | $71,330 |
| 2024 | $3,678,825 | $1,585,370 | $1,567,125 | — | — | $61,509 |
| 2023 | $2,753,019 | $1,577,352 | $1,847,424 | $44,460 | 1 | $71,134 |
| 2022 | $2,880,192 | $2,242,320 | $1,555,709 | $119,812 | 2 | $100,611 |
| 2021 | $2,440,137 | $1,719,245 | $1,238,362 | $69,460 | 2 | $34,625 |
| 2020 | $1,920,086 | $1,219,448 | $1,200,266 | $149,272 | 5 | $40,952 |
About Prader-Willi Syndrome Association (USA)
Based on IRS filings
Prader-Willi Syndrome Association (USA) is a public charity, based in Brandon, FL. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $3.6M in total assets. In 2025, it awarded 1 grant totaling $45K. Net investment income was $71K.
Leadership & Key People
Officers and directors from IRS filings
Prader-Willi Syndrome Association (USA) is led by Stacy Ward, CEO since 2025 (on filings since 2023); 1 of 14 officers listed in 2025 is compensated.
Officers on the 2025 filing
Stacy Ward
CEO
Interim Executive Director → Chief Executive Officer, 2024
Chief Executive Officer → CEO, 2025
On filings since 2023
40 hrs/week
$81K (2023) → $135K (2025)
Marguerite Rupnow
Chairman of the Board
Director → Chair, 2021
Chair → Chairman of the Board, 2025
On filings since 2020
3 hrs/week
No compensation reported
Matt McCleery
Director
On filings since 2020
3 hrs/week
No compensation reported
Tim Hearn
Director
On filings since 2020
3 hrs/week
No compensation reported
Ann Scheimann
Director
On filings since 2021
3 hrs/week
No compensation reported
Clint Hurdle
Director
On filings since 2021
3 hrs/week
No compensation reported
Jeffrey Covington
Director
On filings since 2021
3 hrs/week
No compensation reported
John Lens
Director
On filings since 2021
3 hrs/week
No compensation reported
Michelle Torbert
Director
On filings since 2021
3 hrs/week
No compensation reported
Kathryn Lucero
Director
On filings since 2022
3 hrs/week
No compensation reported
Lisa Lamb
Director
On filings since 2022
3 hrs/week
No compensation reported
Mitch Cohen
Director
Vice Chair → Director, 2025
On filings since 2024
3 hrs/week
No compensation reported
Denise Servais
Secretary
Director → Secretary, 2023
On filings since 2020
3 hrs/week
No compensation reported
Tina Ihenfeld
Treasurer
New on the 2025 filing
5 hrs/week
No compensation reported
Former officers (17)
- Former: Jeff Covington (2024) — Director
- Former: Tina Thlenfeld (2024) — Treasurer
- Former: Mitchell Cohen (2020–2023) — Vice Chair
- Former: Tammie Penta (2020–2023) — Director
- Former: Paige Rivardresigned (2023) — Executive Director
- Former: Julie Doherty (2020–2022) — Secretary
- Former: Paige Rivard (2020–2022) — Executive Director
- Former: Pam Zambrotta (2020–2022) — Treasurer
- Former: James Kane (2020–2021) — Director
- Former: Joan Gardner (2020–2021) — Director
- Former: Rob Lutz (2020–2021) — Director
- Former: Jenny Gibbons (2021) — Director
- Former: Christine Geraci (2020) — Director
- Former: Crystal Boser (2020) — Director
- Former: Dan Driscoll (2020) — Director
- Former: Mitchell Torbert (2020) — Chair
- Former: Pete Girard (2020) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $135K, to Stacy Ward (CEO).
Frequently asked questions about Prader-Willi Syndrome Association (USA)
How much does Prader-Willi Syndrome Association (USA) give each year?
Prader-Willi Syndrome Association (USA) gave $45K across 1 grant in 2025, according to its 2025 IRS Form 990.
How large is Prader-Willi Syndrome Association (USA)?
Prader-Willi Syndrome Association (USA) reported $3.6M in total assets on its 2025 IRS Form 990. Its revenue that year was $3.0M.
Where does Prader-Willi Syndrome Association (USA) operate?
Prader-Willi Syndrome Association (USA) has awarded grants in California, Florida, Georgia, Illinois, Nebraska.
What is Prader-Willi Syndrome Association (USA)'s EIN?
Prader-Willi Syndrome Association (USA)'s EIN (Employer Identification Number) is 41-1306908. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(2)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2025 (received by the IRS June 24, 2026)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in Prader-Willi Syndrome Association (USA)'s focus areas in our free grants database
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Prader-Willi Syndrome Association (USA) down — hundreds of funders to go?