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“The Foundation for Prader-Willi Research was established in 2003 by parents of children with Prader-Willi syndrome (PWS). Today, FPWR is composed of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity and autism spectrum disorders.
The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burden of PWS, allowing them to lead full and independent lives.
Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities.
PWS is recognized as the most common genetic cause of life-threatening childhood obesity. PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they examined. The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia (weak muscles) at birth, insatiable hunger, extreme obesity and intellectual disability.
In recent years, the syndrome has been genetically characterized as an abnormality of chromosome 15, and definitive diagnosis is now based on genetic testing.”