About Foundation for Prader-Willi Research
To eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.
Focus Areas
Prader-Willi syndrome (PWS)Schaaf-Yang syndrome (SYS)Genetic therapyNeurobiology of hyperphagiaMental health and behaviorClinical trials support and outcome measuresBiomarkers and preclinical modelsTranslational drug development
Who They Fund
people with Prader‑Willi syndromefamily members and caregiversclinical researchers and trial investigatorspatient advocacy organizations
About Foundation for Prader-Willi Research
Foundation for Prader-willi Research Inc. centers its grantmaking on Prader-Willi syndrome, with research and therapeutic development as the organizing frame. Its recent grants show a steady flow of research awards to universities and medical centers, including $486,000 to Texas Tech University for research and $472,646 to Massachusetts General Hospital for research. The foundation also appears in translational and venture-philanthropy modes, pairing traditional research grants with direct investments in early-stage companies working on treatments for PWS. That mix points to a funder that supports both discovery-stage science and the path toward therapies. The grant list includes large research awards to institutions such as Columbia University, Emory University, The Ohio State University, and Saint Louis University School of Medicine. Awards recur at common levels, especially around $162,000, while other grants sit near $108,000 and $150,000. The foundation’s stated portfolio also extends beyond PWS alone to Schaaf-Yang syndrome, neurobiology of hyperphagia, mental health and behavior, biomarkers, and translational drug development. Across those areas, the pattern is consistent: fund research that advances understanding of the disorder and supports new treatments.
What Foundation for Prader-Willi Research Funds
In translational research, the foundation backed Sanford Burnham Prebys Medical Discovery Institute with $162,000 in 2025 and The Scintillon Institute with $162,000 in 2023. Those awards fit a portfolio aimed at moving promising findings toward therapies, including preclinical studies and pharmaceutical development. The foundation also funds clinical and human-research infrastructure. It gave $215,990 to The Ohio State University in 2024 and $137,700 to University of Connecticut Health Center in 2025, both for research. Other awards support university and hospital-based work on PWS-focused research, which aligns with its emphasis on clinical and preclinical research. Its scope reaches related biology and treatment pathways as well. Examples include $135,589 to Vanderbilt University in 2023 and $132,558 to Case Western Reserve University in 2024, both for research tied to the broader PWS therapeutic pipeline.
How Foundation for Prader-Willi Research Gives
Typical awards cluster around six figures: p25 is $59,331, median grant size is $108,000, and p75 is $162,000. The recent grants list shows repeated awards at $162,000 across multiple years, alongside smaller and larger research grants, suggesting a structured program rather than highly ad hoc grantmaking. FPWR also makes program-related investments, including through its venture philanthropy program. The active programs accept unsolicited applications, including the FPWR Grant Program, Translational Programs, and Translational Research Programs.
Financial Snapshot
Annual Giving
$2.6M
Total Assets
$8.9M
Total Revenue
$6.2M
Total Expenses
$6.1M
Typical Grant Size
Most grants fall between $59K and $162K, with a median of $108K.
25th Percentile
$59K
Median
$108K
75th Percentile
$162K
Geographic Reach
National23 states funded
About 8% of grants go to recipients in NY.
Funding intensity
LowHigh
Headquarters
Leadership
SUSAN HEDSTROM
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