Thank you for visiting our personal campaign page!
Think about what it would feel like to be Hungry all the time! For those of you who didn't know..Our daughter Rachel has Prader-Willi Syndrome (PWS). This is a genetic birth defect where a piece of chromosome 15 is missing and one of the main characteristics is that people with this syndrome never feel full & gain weight on half the calories of a normal person's diet!
We were very fortunate to find out that Rachel had PWS when she was only 1 month old, and have been active advocates for her ever since. Rachel is doing well and is now almost 17, but we would like to help raise money to fund further research into this syndrome and its symptoms. The ulimate goal, of course, would be to irradicate PWS, but there are a lot of things that can be done before that day comes to help with the symptoms of the syndrome. You can learn more about PWS by going to the National support organization- Prader Willi Syndrome Association of USA (www.pwsausa.org).
This walk that we are participating in will help to raise money for the Foundation for Prader-Willi Research. All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Learn more about PWS and this event at http://www.fpwr.org/.