Prader-Willi Syndrome Association (USA) has been providing life-saving research, crisis and medical support, education and newly diagnosed family support since 1975.
Prader-Willi syndrome is the leading cause of childhood obesity that affects approximately 1 in 15,000 births. We are 1 in 8,000 rare diseases worldwide. It is caused by the deletion of the 15th chromosome. People with this syndrome constantly feel hungry. They do not have the ability to ever feel full, so without support, this can lead to life threatening obesity along with many other medical complications. If not closely monitored, individuals with PWS can potentially die from over eating. In addition people with PWS suffer from a number of other symptoms including medical, psychological, and developmental challenges.
Our target audience are families, caregiver and professionals such as researchers and doctors. We help people all over the world. Those are the people we give our services most to. We get over 2,000 crisis and medical situations a year that people call in seeking for our help. Whether its a problem at home, at school or a major medical problem, we have professional support people on staff that helps them through the process. So that could mean going to their school to help with a problem or sending someone to the home. We also raise funds for research projects as well.
Please feel free to message me if you have any questions.