Foundation for Prader-Willi Research Inc
The Foundation for Prader-Willi Research (FPWR) is a public charity based in Covina, California. It supports research and therapeutic development aimed at improving the health and well-being of people with Prader-Willi syndrome (PWS); its website also describes support for research on Schaaf-Yang syndrome (SYS).
Foundation for Prader-Willi Research Inc at a glance
In short: Foundation for Prader-Willi Research Inc gave $2.6M across 20 grants in 2024 (avg $130K), top state Pennsylvania. 42% of 2024 grantees were new. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $2,597,062
- +16.5% vs 2023
- Grants made (2024)
- 20
- +25.0% vs 2023
- Average grant
- $129,853
- -6.8% vs 2023
- Median grant
- $149,849
- Total assets
- $8,871,895
- -6.8% vs 2023
- New grantees (estimate)
- 42% first-time grantees (8 of 19, 2024; small sample)
- Primary geography
- Pennsylvania (15% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to Foundation for Prader-Willi Research Inc
- Contact
Mailing address: 440 N Barranca Ave 3620, Covina, CA 91723
Phone: (888) 322-5487
Website: https://fpwr.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Open Grants
1 open opportunity from Foundation for Prader-Willi Research Inc
Who Foundation for Prader-Willi Research Inc funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
The largest 2024 recipient was Emory University ($300K). Together the top 10 received $1.9M.
Grant Size Distribution
83 grants across all recorded years
The most common grant size was in the $100–250K range: 46 grants of 83 (55%).
Geographic Focus
Where this funder awards grants
FPWR’s 2024 grants went to recipients in multiple states. The largest shares of grant dollars by recipient state were Pennsylvania (15%), New York (14%), Connecticut (12%), Georgia (12%), and North Carolina (10%).
Grant Distribution by State
Share of 2024 grant dollars across all 20 itemized grants.
States
Cities
Is Foundation for Prader-Willi Research Inc open to new grantees?
42%
first-time grantees, 2024
In 2024, 8 of 19 grantees (42%) were first-time recipients. With only 19 grantees, that is a small sample: one grantee more or less moves the share by about 5 points. First grants averaged $138K; repeat grants $136K. How we count
Medians: $117K first-time, $162K repeat.
Estimate from itemized grant lists in IRS Form 990 filings (2020–2024). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $990K (2020) to $2.8M (2022). In 2024 it made 20 grants totaling $2.6M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Emory University Atlanta, GA | Research | $300,000 |
| Saint Louis University School of Medicine St. Louis, MO | Research | $222,156 |
| Albert Einstein College of Medicine Bronx, NY | Research | $162,000 |
| Duke University Charlotte, NC | Research | $162,000 |
| Rockefeller University New York, NY | Research | $162,000 |
| Sanford Burnham Prebys Medical Discovery Institute La Jolla, CA | Research | $162,000 |
| University of Nebraska Lincoln, NE | Research | $162,000 |
| Yale University New Haven, CT | Research | $162,000 |
| University of Pittsburgh Pittsburgh, PA | Research | $161,999 |
| Carnegie Mellon University Pittsburgh, PA | Research | $161,998 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $8,871,895 | $6,173,660 | $6,062,339 | $2,597,062 | 20 | $495,956 |
| 2023 | $9,519,457 | $6,535,580 | $6,352,142 | $2,229,127 | 16 | $294,425 |
| 2022 | $8,344,580 | $5,083,937 | $5,088,497 | $2,801,475 | 24 | $83,302 |
| 2021 | $6,744,610 | $3,838,959 | $3,149,610 | $1,037,551 | 12 | $16,585 |
| 2020 | $6,285,928 | $3,655,364 | $3,053,653 | $990,011 | 11 | $26,556 |
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
FPWR’s stated mission is “to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.” Its website says it funds basic, translational, and clinical research related to PWS and SYS, with the goal of advancing understanding and developing treatments.
Stated priorities include PWS genetics and genotype-to-phenotype research; the neurobiology of hunger, feeding behavior, and metabolism; cognition, behavior, and mental health; evaluation of existing drugs, devices, and interventions; and development of new drugs, devices, and genetic therapies. FPWR says all scientifically meritorious research related to PWS and SYS will be considered, and highlights projects with potential to improve care or advance therapeutic approaches.
The 2024 grants listed include universities and medical or research institutions. For example, Emory University describes its mission as creating, preserving, teaching, and applying knowledge in the service of humanity. Sanford Burnham Prebys Medical Discovery Institute says its mission is to advance biomedical sciences and make discoveries that improve human health.
Grantmaking
FPWR’s 2024 filing reports 20 grants totaling $2,597,062. Grants ranged from $5,400 to $300,000, with a median of $149,849. The listed grants were for research.
The largest 2024 award was $300,000 to Emory University. Other notable awards included $222,156 to Saint Louis University School of Medicine; $162,000 each to Albert Einstein College of Medicine, Duke University in Charlotte, Rockefeller University, Sanford Burnham Prebys Medical Discovery Institute, the University of Nebraska, and Yale University; and $161,999 to the University of Pittsburgh.
FPWR’s website describes two competitive grant cycles each year, supporting investigator-initiated research from investigators around the world. Applicants to the research grant program may request up to $150,000 in direct costs for an initial 18 months, with the possibility of a second 18-month period through competitive renewal. The program allows indirect costs of up to 8%; applicants may request a smaller budget or shorter duration. FPWR says its grant process considers scientific merit and relevance to people with PWS and their families, with scientific merit assessed by expert reviewers and community perspective provided by advocate reviewers.
FPWR also describes a venture philanthropy program that makes direct investments in early-stage companies developing treatments for PWS. Companies may submit a preliminary application with scientific details; scientific and biotech experts review applications and make recommendations to FPWR’s Venture Philanthropy Committee.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2024 filing lists Paul Wissman as chairperson; Justin Nelson as vice chairperson; Amber Roberson as secretary; and Brian Carucci as treasurer. Directors listed are Annamarie Huttunen, Karine Kabundi, Kristin White, Mark Joseph, Matt Blickley, and Renee Snyder.
Foundation for Prader-Willi Research Inc is led by Susan Hedstrom, Executive Director on every filing since 2020; 2 of 13 officers listed in 2024 are compensated.
Officers on the 2024 filing
Susan Hedstrom
Executive Director
On filings since 2020
35 hrs/week
$73K (2020) → $132K (2024)
Paul Wissman
Chairperson
Board Member → Treasurer, 2021
Treasurer → Chairperson, 2023
On filings since 2020
1 hr/week
No compensation reported
Theresa Strong
Director of Research Program
Director of Research Programs → Director of Research Program, 2022
On filings since 2020
40 hrs/week
$135K (2020) → $173K (2024)
Scott Arant
Director
Board Member → Director, 2021
On filings since 2020
0.5 hrs/week
No compensation reported
Kristin White
Director
On filings since 2022
0.5 hrs/week
No compensation reported
Renee Snyder
Director
On filings since 2022
0.5 hrs/week
No compensation reported
Annamarie Huttunen
Director
New on the 2024 filing
0.5 hrs/week
No compensation reported
Karine Kabundi
Director
New on the 2024 filing
0.5 hrs/week
No compensation reported
Mark Joseph
Director
New on the 2024 filing
0.5 hrs/week
No compensation reported
Matt Blickley
Director
New on the 2024 filing
0.5 hrs/week
No compensation reported
Amber Roberson
Secretary
Board Member → Secretary, 2021
On filings since 2020
0.5 hrs/week
No compensation reported
Brian Carucci
Treasurer
Director → Treasurer, 2023
On filings since 2022
0.5 hrs/week
No compensation reported
Justin Nelson
Vice Chairperson
Director → Vice Chairperson, 2024
On filings since 2022
0.5 hrs/week
No compensation reported
Former officers (17)
- Former: Drew Harman (2020–2023) — Vice Chairperson
- Former: Ian Alberg (2020–2023) — Director
- Former: Mike Sims (2022–2023) — Director
- Former: Renay Snyder (2023) — Director
- Former: Alicia Secor (2020–2022) — Director
- Former: Daniel Chorney (2020–2022) — Director
- Former: Guy Niedorkom (2020–2022) — Director
- Former: Jack Jones (2020–2022) — Director
- Former: Jason Waldrop (2020–2022) — Director
- Former: Jeannine Kowal (2020–2022) — President
- Former: Karen Shahinian (2020–2022) — Director
- Former: Paul Wissman President (2022)
- Former: Brent Snyder (2020–2021) — Director & Vice President
- Former: Brian Dula MD (2020–2021) — Director
- Former: David Pfieffer (2020–2021) — Director
- Former: John Walter (2020–2021) — CEO
- Former: Nathalie Kayadjanian (2020) — Director of Translational Research
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $173K, to Theresa Strong (Director of Research Progr). 2 officers or directors reported compensation on that filing.
Frequently asked questions about Foundation for Prader-Willi Research Inc
How much does Foundation for Prader-Willi Research Inc give each year?
Foundation for Prader-Willi Research Inc gave $2.6M across 20 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $2.2M across 16 grants.
What is Foundation for Prader-Willi Research Inc's typical grant size?
Foundation for Prader-Willi Research Inc's median grant in 2024 was $149,849, and its average grant was $129,853, across 20 grants on its 2024 IRS Form 990. Organizations receiving their first grant from Foundation for Prader-Willi Research Inc that year got $138K on average.
Where does Foundation for Prader-Willi Research Inc give grants?
Foundation for Prader-Willi Research Inc's top state is Pennsylvania, with 15% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were New York (14%) and Connecticut (12%). The most frequent recipient cities were Pittsburgh, PA (2 grants) and New York, NY (2 grants).
Does Foundation for Prader-Willi Research Inc give general operating support?
Not in 2024: none of the 20 grants with a stated purpose on Foundation for Prader-Willi Research Inc's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Research" (20 grants).
Who are Foundation for Prader-Willi Research Inc's largest grantees?
Foundation for Prader-Willi Research Inc's largest 2024 grantees include Emory University ($300,000), Duke University ($270,000 across 2 grants) and Saint Louis University School of Medicine ($222,156), according to its 2024 IRS Form 990. Together they received 31% of its itemized 2024 grant dollars.
How large is Foundation for Prader-Willi Research Inc?
Foundation for Prader-Willi Research Inc reported $8.9M in total assets on its 2024 IRS Form 990. Its revenue that year was $6.2M.
What does Foundation for Prader-Willi Research Inc fund?
FPWR’s stated mission is “to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.” See mission & focus areas ↑
How do I apply for a grant from Foundation for Prader-Willi Research Inc?
Foundation for Prader-Willi Research Inc has no public application process in the sources Grantable reviewed. Check fpwr.org for current guidelines, or contact the foundation directly before submitting a request.
What is Foundation for Prader-Willi Research Inc's EIN?
Foundation for Prader-Willi Research Inc's EIN (Employer Identification Number) is 31-1763110. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 12, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS October 24, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 7, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 21, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Foundation for Prader-Willi Research Inc funds
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Cite this profile
Grantable. (2026). Foundation for Prader-Willi Research Inc funder profile. GrantGraph. Retrieved October 20, 2026, from https://grantable.co/funders/foundation-for-prader-willi-research-inc-morg_8fa40f12b72640dc9313b0bb514f9965
BibTeX
@misc{grantable_311763110_2026,
author = {{Grantable}},
title = {{Foundation for Prader-Willi Research Inc funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/foundation-for-prader-willi-research-inc-morg_8fa40f12b72640dc9313b0bb514f9965},
note = {Accessed 2026-10-20. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from Foundation for Prader-Willi Research Inc's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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