Putt for PWS
in 2011
About PWS and PWSA
PRADER-WILLI SYNDROME
Prader-Willi syndrome is a birth defect resulting from a disorder in chromosome 15. It occurs once every 12,000 to 15,000 births and equally affects males and females of all races and ethnic groups. The disorder develops in two stages: infants have poor muscle tone, feeding difficulties and poor growth. During childhood, these symptoms are replaced by an insatiable appetite, slow metabolism, behavioral problems and learning difficulties. This can be a life threatening condition if food intake is not strictly controlled.
It is estimated that one in every 12,000-15,000 children born in this country has Prader-Willi syndrome. That estimate equates to 20,000 people. PWSA (USA) only knows of 5,565 cases. Therefore, approximately 15,000 individuals are still at large (70%) without a diagnosis. The good news is that in the last two years, due to PWSA (USA)'s New Parent Mentoring program and more awareness, 43% of the estimated infants born with the syndrome are getting diagnosed and referred. Without early diagnosis and medical intervention; they cannot survive the battle that will quickly overcome them as they mature, so please help us with your financial support. Someone you know may have Prader-Willi syndrome.
THE SUPPORT OF PWSA
The Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi syndrome (PWS), their families, and interested professionals. To provide information, education, and support services to its members, PWSA offers:
- research funding to expand knowledge and treatment options
- a bimonthly newsletter, The Gathered View
- an annual national conference for families and professionals
- a toll-free phone number for information and referrals
- publications and audiovisual presentations about PWS
- representation on the international level
