May is PWS Awareness Month

May is Prader-Willi Syndrome Awareness Month, and FPWR is making an effort to help it's community members raise LOTS of awareness in their homes, communities, places of work, and across the world. Each week during the month of May, FPWR will take on a different venue and provide tips, ideas, and downloadable documents to make spreading the word about PWS as easy as can be. You can look forward to PWS friendly recipe ideas, letters, inspirational photo cards, and so much more, that can all be shared via Facebook, Twitter and email.

We invite you to learn more about your influential community members as we highlight a new person each week. And of course there'll be prizes! Watch the FPWR Facebook page for trivia questions that you can answer to win really cool swag! Our first event of the month will take place on May 1st, when we'll invite you to DITCH YOUR LUNCH and donate what you would've spent on the meal to our One SMALL Step Ditch Your Lunch event page! We look forward to spending the month with you reaching out, teaching, and sharing inspiration. As always, we thank you for being such a wonderful dedicated community of parents, family and friends. Happy Awareness Month!

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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