PWS in the News: Researchers studying rare genetic disorder

Dr. Marc Lalande is leading a team of researchers trying to unlock the key to improve the quality of life for children born with Prader-Willi Syndrome by growing stem cells from blood and skin samples in an effort to come up with breakthrough therapy. And so far, the results appear promising. This news clip, which aired May 14th, features the Geraci family of Farmington Connecticut who will be participating in our upcoming One SMALL Step, Middleton walk.

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.