Prader Willi Syndrome, Extreme Makeover, The Starkweathers and Making Miracles Happen
Tonight everything changed for the Prader-Willi Syndrome community. With only 1 in 15,000 people affected by Prader-Willi Syndrome the community is small and often very spread out. On top of that Prader Willi Syndrome is so complex it has been difficult for researchers to make any significant progress. Finally, with our children getting older, time is not on our side. With all of that said, tonight everything changed in the Prader-Willi Syndrome community.
Amy and Toen Starkweather and their family were featured on Extreme Makeover Home Edition. The show was extremely well done. It was accurate, touching and really told the story of families and children living with Prader Willi Syndrome. For the last couple of months the Prader-Willi Syndrome community has really been coming together online with new facebook groups and families with Prader-Willi Syndrome becoming friends.
Tonight the visibility and awareness raised by the show has really put Prader-Willi Syndrome on the map. Looking at the google trends right now you can see that Prader-Willi Syndrome is the # 1 search term!
If you didn’t believe it was possible to make a difference, now you should. To top it off, the Prader-Willi Syndrome community is just getting going. The researchers in the PWS community have been hard at work as well. Last year www.fpwr.org brought together 50 of the top scientists in the world to pull together a plan to find more treatments and eventually a cure for PWS. The research plan is now in place and soon to be published. With the research plan and the momentum on the community coming together, things are now getting interesting. We’re just getting started. If you’d like to help let us know.
keegan.johnson@fpwr.ca
Jocelyn Murray Says:
The programme really was well done and I’m so glad
for all the PW families to finally get a big boost.
Posted on May 12th, 2010 at 3:18 pm