Sunday, December 27, 2009

National Prader-Willi Awareness Month!

I just found out that the House passed HR 55 which establishes National Prader-Willi Awareness Month and encourages continued federal research.

This is HUGE -- the increased awareness will pave smoother paths for all kids with PWS as they struggle with the challenging aspects of this syndrome. Awareness has changed O's life -- but educating people is so hard. This will help Oscar, but it will really help babies yet to be born, and families who are struggling in their own schools and communities to be heard, to be taken seriously.

So I send a big thank you to all the parents, local and national PWS organizations, and legislators who obviously worked so hard to make this happen!

Here is a video of Representative Ed Royce (R-CA) presenting the bill that he co-authored with Representative Jean Harman (D-CA):


  1. Terrific -- I'll pass it on! Do you know of a "button" that one can download on our sites? That would be a great thing, too...

  2. Thanks Elizabeth! I don't know of one, yet, but I will keep any eye out. I need a whole day dedicated to editing my blog layout etc!!

  3. That is excellent news, Mary! I can only imagine how frustrating it must be when educating people that come into Oscar's life! Congratulations and here's to much awareness growing in 2010!

  4. that is great news I live across the bay from u come vist my blog sometime