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May is #PWSAwareness Month | We Have Your PWS Awareness Resources

May is Prader-Willi Syndrome Awareness Month, and FPWR has the resources you need to help spread #PWSAwareness around the globe!

On May 1 we are kicking off Prader-Willi Syndrome Awareness Month! Since 2010, PWS Awareness month has mobilized the PWS community to raise awareness and educate others in their communities and across the country. 

Visit our PWS Awareness month page on the FPWR website for inspiration, educational resources and fundraising ideas to help you with your awareness activities! And don't forget to sign up for our PWS Awareness Month emails to receive a daily PWS fact that you can share to help build awareness.

You can spread #PWSawareness on Facebook with our 'I Love Someone with PWS' profile frame! Simply go to update your profile photo and select 'Add Frame'. Search for 'prader-willi awareness' and apply the frame. 

PWS Awareness Month Background

Introduced by Reps. Ed Royce (R-CA) and Jane Harman (D-CA), the House of Representatives passed House Resolution 55 on December 8, 2009. The resolution established May as an awareness month for Prader-Willi syndrome (PWS).

"This important resolution marked a real turning point in the fight against PWS," said Lauren Schwartz Roth, Ph.D., former President of the Foundation for Prader-WilliResearch (FPWR). "In addition to establishing an awareness month, the resolution recognizes the importance of awareness and early diagnosis and recognizes the efforts and commitment of patient advocacy groups such as the FPWR. We are deeply appreciative to Reps. Royce and Harman for their hard work and support."



Topics: News

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 future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.