Thank you for visiting our team page! As you may know, our son, Jacob, has a rare genetic disorder called Prader-Willi Syndrome (PWS). PWS affects approximately 1 in 15,000 people, equally across gender, races, and ethnicities.
PWS comes with many challenges: low muscle tone, learning disabilities, developmental delays, behavioral issues, and later in life, the trademark characteristic of hyperphagia (a chronic, incurable, insatiable hunger). Individuals with PWS never feel full, no matter what or how much they eat. There is no cure...yet.
Jacob has come a long way, but not without the help of numerous doctors, specialists, nurses, therapists, teachers, preschool teachers, friends, and family. He still has a long road ahead, with many challenges facing him around every corner, but we believe in his potential and the critical research being done that will help him along his journey to lead a FULL, independent life.
We are taking One SMALL Step to help raise funds for the Foundation for Prader-Willi Research (FPWR). FPWR is dedicated to funding high quality, critical research to find a cure and help eliminate the challenges of PWS -- for Jacob, all of his friends with PWS, and their families.
Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research, You can learn more about PWS and the research underway at http://www.fpwr.org.
Please join us and donate now!