May is Prader-Willi Syndrome (PWS) Awareness Month
Thank you for visiting Jacob’s 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. It occurs when a certain set of genes on the 15th chromosome are either missing or inactive.
Since PWS is so rare, most pharmaceutical companies don't have a lot of interest in investing to find treatments or cures: not a lot of patients = not a lot of money to be made. That's where the Foundation for Prader-Willi Research (FPWR) comes in. FPWR is dedicated to funding high quality, critical research to find a cure and help eliminate the challenges of PWS -- for Jacob, all his friends with PWS, and their families.
Jacob is an awesome, lovable, cheerful, positive, hopeful, strong, resilient, courageous, valiant, never-quitting, superhero force of nature! 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 NOW that will help him along his journey to lead a FULL, independent life.
Please join us to find a cure for Jacob and donate now!
Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research (FPWR). You can learn more about PWS and the research that is underway at http://www.fpwr.org/.
Please wear orange for Jacob, your Prader-Willi Syndrome Warrior!!