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    The Foundation for Prader-Willi Research

    Our mission: to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

    Our Strategy

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    Our Impact

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    The Foundation for Prader-Willi Research was established with one aim in mind: to eliminate the challenges of Prader-Willi and Schaaf-Yang syndromes through the advancement of research and therapeutic development.

    We are uniquely focused on supporting research and developing new therapies. Our devotion to finding new forms of treatment, and ultimately cures, is what drives us.

    At FPWR, we’re all in. We operate with focus, determination, and accountability. We deliberately hold no endowment, because we believe funds should be invested with urgency toward our mission, not sitting idle. Every dollar raised is directed strategically to advance the most promising research and bold initiatives that can change lives.

    Our work is made possible by an extraordinary community—especially parents and family members—who are driven to accelerate progress. Their dedication fuels our mission every day.

    We’re proud of how far we’ve come, but we’re not done yet. Success isn’t measured just by awards or publications. It’s defined by real, tangible improvements in the lives of those living with PWS.

    We know what's at stake because we live it alongside the families we serve. Until every person with PWS and SYS has access to effective treatments—and ultimately cures—we will continue to push science forward with urgency, purpose, and unwavering determination. 

    Woman speaking at a podium during an FPWR conference presentation.

    Leading the Science. Inspiring Progress.

    Dr. Theresa Strong is a co-founder of FPWR, our Director of Research Programs, and the parent of a person with Prader-Willi syndrome. Her scientific expertise and personal connection to the mission have helped shape FPWR's work since the very beginning and continue to guide our pursuit of better treatments and, ultimately, cures.

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    Our Story

    FPWR was founded by families who believed that more could—and should—be done for people living with Prader-Willi syndrome. At a time when research funding was limited and there were no treatment options for PWS, they set out to create an organization focused on accelerating the science needed to understand PWS and develop meaningful therapies.

    More than two decades later, that vision continues to guide everything we do. What began as a grassroots effort has grown into an internationally recognized research foundation that partners with leading scientists, clinicians, industry, and the PWS community to move research forward faster.

    Our Approach

    Group of researchers and conference attendees posing together at an FPWR event.Research doesn't advance through funding alone. It requires collaboration, infrastructure, and a deep understanding of the needs of both scientists and families. FPWR serves as a catalyst, bringing together researchers, clinicians, industry partners, and families to accelerate discovery and move promising ideas toward meaningful treatments.

    Our work includes:

    • Funding innovative research with the potential to develop new treatments and improve care.
    • Building resources that can be used across research efforts,  making it easier for scientists to study PWS and SYS.
    • Supporting clinical research and helping connect families with research opportunities.
    • Fostering collaboration across academia, industry, and the clinical community to accelerate progress.
    • Educating the community about research advances and emerging treatment opportunities and providing a forum for scientists and clinicians to report their progress back to families. 

    Together, these efforts help remove barriers, speed scientific discovery, and bring promising therapies closer to the people who need them.

    Our Commitment to Transparency

    FPWR is committed to using every dollar responsibly and sharing progress with the community that moves our mission forward. Learn more about our leadership, governance, and how your support advances our mission.

    Join Us in Accelerating Progress

    Researcher presenting and discussing a scientific poster with two attendees at the FPWR Research Symposium.Every breakthrough begins with people who believe a better future is possible.

    Whether you participate in research, make a donation, volunteer, or raise awareness, you are helping accelerate discoveries that can transform the lives of individuals and families living with PWS and SYS.

    Together, we are building a future with better treatments, and more opportunities!

    Two researchers wearing lab coats standing together in a laboratory.
    SUPPORT RESEARCH

    Help accelerate new treatments and, ultimately, a cure for people with PWS.

    Donate

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    DRIVE DISCOVERY

    Research depends on families like yours. Help drive the next PWS breakthrough.

    Take Action

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    Healthcare professional in a white coat smiling with a young boy during a clinical visit.
    Stay Informed

    Get the latest PWS research news and updates delivered to you each month. 

    Subscribe

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