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.

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.

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.

No. FPWR is a nonprofit disease foundation, not an investment entity. It holds no disclosed endowment or assets under management profile comparable to a family office. Its financial resources are driven by annual fundraising, not by managing a corpus of wealth generated by a family enterprise.

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.

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.

FPWR focuses singularly on Prader-Willi syndrome and does not fund research into unrelated rare diseases. Within PWS, its emphasis is on translational science that can reach human trials; it typically avoids pure basic-science projects that lack a clear pathway to clinical application within a reasonable timeframe.