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What is PWS?

Prader-Willi syndrome (PWS) is a complex genetic disorder resulting from abnormality on the 15th chromosome.  PWS causes low muscle tone, short stature if not treated with growth hormone, cognitive deficits, problem behaviors, and most notable, a chronic feeling of hunger which, when coupled with a metabolism... 

What We Do

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...

Make a Donation

Funds donated to UPWSA are used to help provide respite care to parents, sponsor Utah PWS conferences, provide educational materials and adaptive equipment for Utah families, and make available summer stipends for children with PWS to enjoy summer camps and engage with the community around them.

Upcoming Events

  • 1st Annual Golf Tournament Benefiting UPWSA
    Tue, Jun 28
    Birch Creek Golf Course
    Come join us for an event benefitting the Utah Prader-Willi Syndrome Association. The tournament will begin at 8 a.m. with a shotgun start. There will be a raffle, and lunch will be provided. For questions call Alyssa Nielsen (435) 881-9903. Thank-you for your support!
  • UPWSA Swim Party
    Thu, Jul 21
    Mark your calendars for our annual Utah Prader-Willi syndrome family swim party at the Lehi outdoor pool! We will have dinner and fun first at the adjacent pavilion and playground starting at about 6:30 p.m. and then swimming and swim games from 8-10 p.m.
  • UPWSA Fitness Fun Raiser
    Sat, Sep 17
    Olympic Park
    The purpose of the Prader-Willi Syndrome Fitness Fun-Raiser is to promote awareness, to support children and family members who struggle with this syndrome every day, and to raise funds for the Utah Prader-Willi Syndrome Association (UPWSA).