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.
New Medication Approved in March 2025 for PWS! VYKAT XR
“Today marks a historic day for the PWS community. The FDA’s approval of VYKAT XR represents a monumental step forward in addressing the longstanding unmet needs of individuals living with PWS and their families,” -Stacy Ward, Chief Executive Officer of the Prader-Willi Syndrome Association | USA.
Read These 2023 PWSA National Conference Articles About our Utah ChapterWritten by Christopher Rich
Upcoming Events
Sat, May 31KaysvilleCome join us for a UPWSA Family Picnic and online fundraiser in May! This will be a exciting opportunity to connect with other families living with Prader-Willi syndrome in Utah and raise funds for the Utah Prader-Willi Syndrome Association!
Wed, Jun 11Cedar Hills Golf ClubCome join us for an event benefitting the Utah Prader-Willi Syndrome Association. Breakfast and registration start @ 7am. The tournament will begin @ 8am with a shotgun start. A raffle and lunch will be provided. For questions call Danny Shelton (801) 466-1000. Thank you for your support!
Tue, Jun 17Birch Creek Golf CourseCome 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!