2014 Year in Review

In 2014 FPWR proudly supported 20 projects and initiatives! Thanks to the keen guidance of our scientific advisory board and volunteer review panel, this portfolio of projects represent the best ideas in the world and will advance the science of PWS as well as work towards the development of novel therapies for those impacted by the disorder. As you know, several clinical trials are currently underway in the U.S. and the Global Prader-Willi Registry will be ready for launch in early 2015.  There has never been a more critical time for PWS research.

Several records were broken this year on the fundraising front with the 9th annual DC Golf Tournament breaking $220,000, the   One Small Step walk series attracting more than 10,000 participants and raising a whopping $1.5 million and the 2nd annual NYC Live Life Full gala also attracting more than 500 participants and raising over $1 million in donations! Because of your efforts, your networks and your commitment, we will be able to fund  even more worthy projects in the coming year!
The 2014 FPWR Research Conference held in Garden City, New York this past November was a great success. For the first time our families were able to engage one-on-one with representatives from Pharmaceutical companies that have a deep interest in bringing treatments to market for our children. The weekend was full of educational opportunities, networking and, most important, community-building amongst our families. It was an incredible weekend and I hope you will join us next September for the  2015 FPWR Research Conference in Austin, Texas!
FPWR continues to be the driving force in PWS research because of YOU. On behalf of our staff, the board of directors and our children living with PWS, I thank you for your incredible commitment this year.
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Watch our Year In Review Video!


Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.

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