FPWR Gives Thanks – To All Who Give Us Hope for the Future!

This Thanksgiving, the FPWR team is thankful for:

The amazing group of dedicated researchers and clinicians around the world working to tackle the hard problems of PWS. From defining new clinical trial endpoints to helping parents improve how we care for our children and giving us hope for the future.

2017 Clinician power - cropped

The parents who are taking ACTION. Raising the critical funds to support research, completing research surveys and participating in the PWS registry, our parents are ensuring we are a research ready community.

2017 Indiana moms

And most importantly, we are thankful for YOU because it is through YOUR support that this research is happening.

You have taken us this far, and we know that with your support, we will continue to fund the best PWS research in the world so that one day, our loved ones with PWS will lead FULL and independent lives. We are so thankful of all you have given us!

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 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.