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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

  • Part 2 - Staci Visser - Law Enforcement and Criminal Involvement Training
    Part 2 - Staci Visser - Law Enforcement and Criminal Involvement Training
    Thu, Apr 25
    Law Enforcement & Criminal Involvement
    Apr 25, 2024, 7:00 PM – 8:00 PM
    Law Enforcement & Criminal Involvement
    Join the Utah Prader-Willi syndrome Association for a 2 part virtual training regarding law enforcement encounters for persons with disabling conditions. Join Zoom Meeting https://us02web.zoom.us/j/82684216323?pwd=RjNrbStMR0dvME9raFRXK21UbUpGZz09
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  • UPWSA Fitness Fun-Raiser 2024
    UPWSA Fitness Fun-Raiser 2024
    Sat, May 11
    Olympic Park
    May 11, 2024, 11:00 AM – 2:00 PM MDT
    Olympic Park, 2650 W Parkside Dr Lehi, UT 84043
    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).
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  • 3rd Annual Golf Tournament Benefiting UPWSA
    3rd Annual Golf Tournament Benefiting UPWSA
    Tue, Jun 25
    Birch Creek Golf Course
    Jun 25, 2024, 8:00 AM – 2:00 PM MDT
    Birch Creek Golf Course, 550 E 100 N, Smithfield, UT 84335, USA
    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!
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  • UPWSA Swim Party
    UPWSA Swim Party
    Fri, Aug 30
    Lehi
    Aug 30, 2024, 6:00 PM – Aug 31, 2024, 9:00 PM
    Lehi, City Recreational Facility, 451 E 200 S, Lehi, UT 84043, USA
    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 6:00 p.m. and then swimming and swim games from 7-9 p.m.
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