In 1991, a group of parents met in the waiting room of a small medical clinic in McFarland, Wisconsin. These parents all had one thing in common – they were parents of a child who had Prader-Willi syndrome (PWS). Most knew very little about PWS. What they did know they learned from experience. All felt very alone.
In 1992, these parents formed a nonprofit organization called the Prader-Willi Syndrome Association of WI, Inc. They became a chapter of the national PWSA (USA).
The mission of the Prader-Willi Syndrome Association of Wisconsin, Inc.
is to support, educate and advocate for persons with Prader-Willi
syndrome, their families and professionals in meeting the challenges of
this disability. We strive to help parents, families and professionals
gain a better understanding of the unique needs of children and adults
with Prader-Willi syndrome.
People contact the office through our toll-free number or by email. Staff answer questions, provide support and connect callers to resources. Through the quarterly newsletter, The Wisconsin Connection, new information is shared with families and professionals. When requested, staff and/or volunteers help educate others through consultations and trainings. PWSA of WI, Inc. is frequently called upon to advocate for persons with PWS. It has become the voice of all who are impacted by this disability.