This Sept. Gary, Ayden Jane and I went to Washington and walked Capital Hill speaking with a few Senators and Representatives. It was all set up for us by FPWR, so we just went to the appointments and talked about PWS, Ayden Jane and the hope that is out there for research and for those diagnosed early. To us this was very exciting news!!!
FOR IMMEDIATE RELEASE
December 10, 2009
Audra McGeorge (202) 340-8147
Royce Legislation Establishes National Prader-Willi Syndrome Awareness Month
WASHINGTON, D.C. - Today the House of Representatives passed H.Res.55, legislation offered by Rep. Ed Royce (R-CA) which establishes a National Prader-Willi Syndrome Awareness Month, and encourages continued federal research of this syndrome -- a recognized, common genetic cause of childhood obesity.
"With this legislation we can increase awareness of this genetic disorder among health care providers, pediatricians, parents, teachers, and communities. Additionally, we can begin to provide opportunities for fuller, more independent lives for those affected by this disease," said Royce.
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