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.
What is Prader-Willi Syndrome?
Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000. PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, motor and social development delays and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Children with PWS can be sweet and loving, but they display characteristics of the Prader-Willi personality that can cause social and behavioral problems. They also have many complex and unique medical issues. With knowledge, support and understanding, persons with PWS can and do become valued members in our communities. They need to be supported by parents, care givers and professionals who have the knowledge and tools needed to assist them in doing this. PWSA of WI, Inc. provides a variety of services to make this possible.
With knowledge, support and understanding, persons with PWS can and do become valued members in our communities. They need to be supported by parents, care givers and professionals who have the knowledge and tools needed to assist them in doing this. PWSA of WI, Inc. provides a variety of services to make this possible.