myhungryboy.blogspot.com

Let's walk for the cure! So, it has been a while since I have posted, but with great and fun news! Since Max's diagnosis, Steve and I went from devastation to realization of what Max's condition means for our lives as a family. We dove into understanding it all, going to conferences and I am on every support group and research group I can find. One to learn, then to be part of the community. I have found that I learn the most from the parents of kids of PWS who have been through it before me and have older children. In these groups and at the conferences I have now also met the next generation of parents with kids of PWS...and the hope we all share for cure for the hunger, which seems to be the biggest devastation to hopefully having a life of independence as an adult.The movement has started with parents to raise money for research to find a cure. It started about 8 years ago with one family in Toronto saying, there is money for support, but where is the money in research? They decided to raise money and help and feel like they were working towards something and name their first walk, One Small Step for Prader-Willi - and with that success of raising money, they felt empowered. And now, just last the One Small Step walks around the world have raised over 1 million dollars! This year they hope to raise 1.3 million or more! So, now I decided to join that band wagon and along with another mom, I am hosting the 1st Chicago One Small Step walk! I am completely a wreck that it will flop, but so excited to be doing this and doing my part for Max! If you want to check it out, please visit http://onesmallstep.fpwr.org/dw/walking/location/721 for our main page or just check out my personal fundraising page http://onesmallstep.fpwr.org/dw/users/heatherosterman/Deerfield2013 - So if your reading this, come out and have some fun and walk for Max and a cure! :)