Foundation for Prader-Willi Research

The Foundation for Prader-Willi Research (FPWR) is a non-profit organization dedicated to advancing scientific understanding and therapeutic development for Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS). The organization primarily builds research infrastructure, including a world-class grant program, translational research initiatives, and essential research tools like patient registries and biobanks. Their technical approach involves funding and directing studies across basic science, therapeutic development, and pre-clinical and clinical trials.

Founded in 2003, FPWR emerged from the personal experience of its founding members, including Theresa V. Strong, Ph.D. Strong, a scientist with a background in medical genetics, co-founded the organization driven by the profound insight gained as a parent of a son with Prader-Willi syndrome. This personal connection fueled a commitment to aggressively pursue treatments and a cure rather than accepting the condition's traditional definition.

FPWR's work directly benefits individuals diagnosed with Prader-Willi and Schaaf-Yang syndromes, as well as their families and caregivers. The organization's overarching vision is to eliminate the severe challenges associated with these genetic disorders, striving to discover effective treatments and ultimately a cure that significantly enhances the health and quality of life for those affected globally.