# Foundation for Prader-Willi Research

Foundation for Prader-Willi Research is a Research foundation based in Walnut, United States.

## Overview

- **Organization type:** Research foundation
- **Headquarters:** Walnut, United States
- **Region:** North America
- **Address:** Walnut, CA, United States
- **Founded:** 2003
- **Assets under management:** Undisclosed
- **Website:** fpwr.org
- **LinkedIn:** https://www.linkedin.com/company/fpwr

## Regulatory record

- **Reports private funds:** No

## About

Foundation for Prader Willi Research is a collective of thousands of parents, family members, researchers, and others focused on addressing PWS-related issues. The organization has made 4 investments, including a Series C investment in Aardvark Therapeutics on May 09, 2024. Their portfolio includes a single exit, Aardvark Therapeutics, which occurred on February 13, 2025.

## Sectors

- Healthcare Services

## People

- Susan Hedstrom — Executive Director

## Questions

### Who runs the Foundation for Prader-Willi Research?

Susan Hedstrom serves as Executive Director, a position she has held since co-founding the organization. She is a parent of a child with Prader-Willi syndrome, and her leadership anchors the foundation’s patient-driven mission. A board of directors composed largely of parents and scientific advisors supports the strategic direction.

### What is the foundation’s approach to funding research?

FPWR operates as a venture-philanthropy organization. It issues direct, milestone-based grants to academic labs and biotechs, requiring regular reporting and data sharing. The goal is translational: to bridge basic genetic research and clinical trials for Prader-Willi syndrome therapies, rather than open-ended academic inquiry.

### How does FPWR source investment opportunities in drug development?

The foundation does not make equity investments. It sources research proposals through an open application process reviewed by its scientific advisory board. FPWR’s Global PWS Registry also generates real-world data that helps identify high-potential therapeutic targets, making the organization a critical partner for biopharma firms planning PWS trials.

### What is the Global PWS Registry and how is it used?

The Global PWS Registry is a patient-reported outcomes platform managed by FPWR. It aggregates standardized data on the natural history of Prader-Willi syndrome from families worldwide. The registry is used to demonstrate trial feasibility to pharmaceutical companies, reducing the risk and timeline for clinical trials in the PWS space.

### How is this foundation related to other PWS organizations?

FPWR is distinct from service-oriented PWS groups like PWSA | USA. FPWR focuses exclusively on translational research and clinical-trial enablement. It collaborates with other PWS advocacy bodies but operates with an independent scientific strategy and funding model.

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Last updated: 2026-06-03T20:00:00.000Z

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