Hi! We're joining together for Claire to support her in her fight against Prader-Willi Syndrome. PWS is a rare, non-hereditary genetic disorder that encompasses a wide range of medical and developmental issues. It is complex, life-threatening and there is no cure.
Claire was born at Hinsdale Hospital just outside of Chicago where she spent the first five weeks in NICU. At four weeks she was diagnosed with this rare disorder which stems from the 15q chromosome. When we were able to finally bring Claire home, she had a feeding tube and LOTS of instructions.
There are many challenges associated with PWS, including physical and cognitive disabilities, but the most challenging symptom those with PWS face is chronic hunger. The unrelenting, physiological drive to eat. PWS effects the hypothalamus, tricking the brain into thinking the body is starving...all the time. There is no cure, but current research efforts give us HOPE!
This is a team for Claire's family, friends, and supporters that love her and want her to Live Life Full - in ALL aspects of her life. That is why we are fundraising for The Foundation for Prader-Willi Research, a 501(c)3 charitable organization. FPWR is urgently working and funding research to advance treatment options, eliminate challenges, and find a cure. Claire's future depends on this important research.
There are several options to show your support! You can sign up to join our team and share your connection with Claire on your personal fundraising page, then share that page with friends and family. You can make a donation to our team and share our page. Our One SMALL Step main event will be in February 2019 in Estero, date TBD. We will also be posting events leading up to the walk, so check in frequently!
100% of proceeds from One Small Step events advance Prader-Willi Research! You can learn more about Prader-Willi and the research that is underway at http://www.fpwr.org/.