Welcome to Team Evan's 2019 fundraising page!
Hi, I'm Evan, and I have Prader-Willi Syndrome. PWS is a rare, non-hereditary genetic disorder that encompasses a wide range of medical and developmental issues.
When I was being made, a tiny piece of my 15th chromosome fell off. I spent the first several weeks of my life at Riley Hospital NICU because I couldn't eat or breathe on my own. With the help of over a dozen doctors and therapists, I continue to grow stronger and overcome obstacles!
There are many challenges associated with PWS, including physical and cognitive disabilities, but the most challenging symptom those with PWS face is chronic hunger. PWS tricks the brain into thinking the body is starving…all the time. There is no cure, but current research efforts give us HOPE!
My family and friends love me and want me to live life full, not just in my belly, but in all aspects of my life. That's why they are fundraising for The Foundation for Prader-Willi Research. We love FPWR because they are urgently working to find a cure. My future depends on this important research.
100% of proceeds from One Small Step events advance Prader-Willi Research!
One Small Step Walk – Fall 2019, stay tuned!
Evan's 4th birthday - December 2019, stay tuned!