What is the Prader-Willi Syndrome Association?

Prader‐Willi Syndrome Association | USA was formed in 1975 to unite parents, professionals, and other interested citizens to enhance the quality of life of those affected by Prader‐Willi syndrome. PWSA | USA empowers the PWS community through shared experiences, research, education, advocacy, and support. With chapters in most states, ours is the only national PWS support organization whose sole purpose is to assist individuals with the syndrome, and their families, every step of the way.

Our History


  • “Prader-Willi Syndrome Parents and Friends," soon to be renamed “Prader-Willi Syndrome Association," was established by Gene and Fausta Deterling, parents of a son with PWS, with the support of Dr. Vanja Holm, of the Child Development and Retardation Center in Seattle, Washington


  • Association grows to 140 members, including some from other countries


  • PWSA officially incorporates, with Gene Deterling as first President, and Delfin Beltran as first Chairman of the Board


  • In addition to the newsletter, the Gathered View, PWSA’s first publication, a booklet entitled Prader-Willi Syndrome, A Handbook for Parents, by Shirley Neason (also editor of the GV) was made available


  • The first annual national conference was held in Minneapolis, Minnesota. 165 adults, 15 with PWS, and 15 siblings attended