The mission of the Utah Prader-Willi Syndrome Association is to enhance the lives of individuals and families affected by Prader-Willi syndrome.
UPWSA is a 501(c)(3) nonprofit organization providing support to individuals diagnosed with PWS, their families, communities, and care providers.
We work in conjunction with the Utah Prader-Willi Syndrome multi-disciplinary medical clinic, which provides medical care for children and adults with PWS. For information on the medical clinic, please reach out to Debbie Mason, the care manager at
We train educational professionals to create the most supportive and appropriate school learning environments.
We train professional caregivers about PWS and how to best support individuals with PWS.
We work to better PWS supported living homes in Utah.
UPWSA holds fundraisers to spread awareness and raise funds to help support our programs and provide direct grants to our families to help with respite care, summer camps, community activities, and items such as ipads and adaptive bikes.
UPWSA works in conjunction with PWSA (USA), the national organization, supporting research projects providing “the potential for immediate and high impact for the PWS community.” This national organization maintains a robust website full of help and resources: pwsausa.org
UPWSA creates coalitions working to pass legislation to effect positive change for the disability community as a whole.
We are working on solving the hard issues of providing respite to our families and long term quality residential care.
The UPWSA Grant Program
The Utah Prader-Willi Syndrome Association (UPWSA) will consider funding for programs, initiatives, research or projects within the state of Utah that support our mission of enhancing the quality of life and empowering those affected by Prader-Willi syndrome.