[VIDEO] Making the Future Brighter

How can we make the future a bit brighter for our loved ones with Prader-Willi syndrome? It starts with us! Five potential drug treatments for Prader-Willi syndrome are currently in clinical trials and more are coming down the pipeline. Staying informed of research opportunities and participating when possible is critical to move the research forward. 

We thank all the participants who have taken part in these clinical trials or submitted samples such as blood, teeth and even poop, so that the future can be brighter for our loved ones with PWS!

There is a tremendous need for new treatments for PWS and much more we need to learn so that we can bridge this medical gap. The Global PWS Registry is compiling critical information on patients so that we can better understand the clinical complications of PWS, answer research questions, improve standards of care, and enroll clinical studies faster. As a community member, enrolling in the Registry and completing the surveys is one of the most important actions YOU can take to help the research move faster.

We are working diligently to find treatments for our loved ones with PWS. Community involvement has been crucial in our success to date and will be even more important in the years to come as more therapies move through the research and development pipeline. Join us as we work to find effective treatments for our loved ones with PWS -- we can’t do it without you!

Join us and get involved today!:

Together, we will eliminate the challenges of Prader-Willi syndrome.

Every year, we take One SMALL Step so that we can fund the best research in the world, supporting studies that will provide a better understanding of PWS, address the challenges of PWS, find new drugs, and develop entirely new therapeutic approaches. More than 8,000 participants come out each year to support our research programs - thank you for taking one SMALL step with us! Watch the video below to hear from parents about why they've taken one SMALL Step.

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.