Are You Ready For an Exciting Year?

2014 is starting with a BANG! Several new PWS clinical trials will be beginning around the country will be evaluating potential therapies for PWS for children and adults with PWS. The active involvement of our community will be critical to seeing these studies through.  We're very excited about our first webinar of 2014 which will discuss clinical trials and let you know what you can expect. Be be sure to join us January 30th for an informative webinar covering PWS clinical trials - what you need to know. One SMALL Step is returning in 2014 even bigger than before! We have raised nearly $3 million for Prader-Willi research in the past four years and this year promises to be our best year yet! Our 2014 One SMALL Step goal is $1.5 million: it is a big challenge but our community has risen to the challenge before and I have no doubts we will do it again!  Our OSS development committee has worked hard the past few months to make hosting a walk easier than ever before with downloadable guides, sample letters and host mentors. Join us February 16 for our One Small Step Kick Off Webinar where we will discuss how OSS is changing the landscape of PWS research and how you can join this powerful movement. As we speak our most recent cycle of grant applications are being reviewed and the proposals are fascinating! Forty-four projects from outstanding scientists from around the globe have been submitted for review, the most in FPWR history! An amazing array of scientific disciplines, know-how, and cutting edge techniques are represented, all being applied to better undertand and treat PWS. It will be a difficult to determine which projects to fund and we thank our advocate review volunteers for weighing in on the importance of each project to to our community. So are you ready? It's going to be an exciting year!

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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