Lead the Way...Change Their Future
Prader-Willi syndrome Research Annual Conference 2008
This year's conference, held in Washington, DC September 7-9, was a huge success! PWS families from around the country were able to come together and share their experiences, insights, and triumphs. Over the course of three days they heard from top researchers about the most cutting edge PWS research and treatments that are currently being developed. They also had the unique opportunity to storm Capitol Hill and speak with their Members of Congress about House Resolution 1386 (HR 1386).
HR 1386 supports a National Prader-Willi Awareness Month and additional research into Prader-Willi Syndrome. It recognizes the commitment of parents, families, researchers, health professionals, and others dedicated to finding an effective treatment and eventual cure for PWS. Perhaps most importantly, it supports increased funding for research into the causes, treatment, and cure for Prader-Willi syndrome.
Through the efforts of the FPWR families who advocated on Capitol Hill for the rights of all those affected by PWS, HR 1386 now has 26 cosponsors - truly an incredible feat and one to be very proud of. However, HR 1386 still needs more support. Click here to find out what you can do to truly make a difference! This year's conference took the first step to changing the face of PWS. FPWR Annual Conference 2009 is already in the planning stage where we can continue to Lead the Way...Change Their Future!
3rd Annual Foundation for Prader-Willi Research Charity Event
On September 8, 2008, in conjunction with the conference, The California State Society sponsored the 3rd Annual Foundation for Prader-Willi Research Charity Event at Belle Haven Country Club. This year the event was expanded to not only include a golf tournament, but a tennis tournament, family fun day by the pool, and silent auction as well! The families attending the conference had the opportunity to relax by the pool and speak with the tournament participants about what it is like to live with PWS. Once again this event broke FPWR records by raising over $225,000, making it the most successful event in FPWR history!
This year's conference, held in Washington, DC September 7-9, was a huge success! PWS families from around the country were able to come together and share their experiences, insights, and triumphs. Over the course of three days they heard from top researchers about the most cutting edge PWS research and treatments that are currently being developed. They also had the unique opportunity to storm Capitol Hill and speak with their Members of Congress about House Resolution 1386 (HR 1386).
HR 1386 supports a National Prader-Willi Awareness Month and additional research into Prader-Willi Syndrome. It recognizes the commitment of parents, families, researchers, health professionals, and others dedicated to finding an effective treatment and eventual cure for PWS. Perhaps most importantly, it supports increased funding for research into the causes, treatment, and cure for Prader-Willi syndrome.
Through the efforts of the FPWR families who advocated on Capitol Hill for the rights of all those affected by PWS, HR 1386 now has 26 cosponsors - truly an incredible feat and one to be very proud of. However, HR 1386 still needs more support. Click here to find out what you can do to truly make a difference! This year's conference took the first step to changing the face of PWS. FPWR Annual Conference 2009 is already in the planning stage where we can continue to Lead the Way...Change Their Future!
3rd Annual Foundation for Prader-Willi Research Charity Event
On September 8, 2008, in conjunction with the conference, The California State Society sponsored the 3rd Annual Foundation for Prader-Willi Research Charity Event at Belle Haven Country Club. This year the event was expanded to not only include a golf tournament, but a tennis tournament, family fun day by the pool, and silent auction as well! The families attending the conference had the opportunity to relax by the pool and speak with the tournament participants about what it is like to live with PWS. Once again this event broke FPWR records by raising over $225,000, making it the most successful event in FPWR history!