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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!


May is PWS Awareness Month. A time to raise awareness and advance research so we may find new treatments for Prader-Willi syndrome (PWS). By coming together this month, we can amplify our impact and propel treatments for PWS forward faster.

Since 2010, PWS Awareness Month has mobilized the PWS community to raise awareness and educate others in their communities and across the country. We invite you to join us this year and signal your commitment to PWS research.

Visit our PWS Awareness Month page for inspiration, educational resources, and fundraising ideas to help you with your awareness activities, and be sure to sign up for our PWS Awareness Month emails to receive a daily PWS fact that you can share to help build awareness.

Get involved and rally your friends and family to take part. PWS research is packed with more promise than ever before! With your help, we will find the treatments we are seeking. Help us amplify progress this month by getting involved, donating, and helping raise the critical funding we need to accelerate treatments for PWS.


Join the conversation online using #PWSAwarenessMonth.



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.