FPWR Proudly Awards $1.2 Million to Promising Science in Prader-Willi Syndrome (PWS)

Los Angeles, CA, August 7, 2014– The Foundation for Prader-Willi Research (FPWR), a nonprofit organization dedicated to supporting research to advance the understanding and treatment of Prader-Willi syndrome (PWS), announced today the awarding of $1.2 million in research grants.  A portfolio of 17 grants from leading researchers around the world was selected, which will advance the science of PWS and develop novel therapies for those impacted by the disorder.  Among the research topics to be addressed are studies to determine the underlying cause of excessive appetite in PWS, to examine genetic, metabolic and microbiome changes in PWS, to evaluate new approaches to reduce challenging behaviors associated with PWS, and to test novel potential therapies. The funded projects will be conducted at prestigious institutions such as Columbia University, University of California, San Francisco, Children’s Hospital Los Angeles, Baylor College of Medicine and the University of Leuven, Belgium.

For a detailed list of the newly funded projects and their potential impact, please visit the FPWR Funded Projects page.  With this new round of funding, FPWR has provided more than $4.5 million in PWS research funding to support more than 70 research projects since 2003. A downloadable listing of 2014 funded projects is available here: 2014 FPWR Funded Projects. “We are thrilled to be supporting such a strong and diverse portfolio of research projects, which includes support for clinical trials, for cutting edge basic science research, and to develop much needed PWS research tools” said Dr. Theresa V. Strong, chair of the FPWR Scientific Advisory Board.  “In today’s competitive funding environment, it is more important than ever that we are able to provide this support to foster innovative PWS research.” “This is a huge milestone for FPWR. This is the first time we have had the resources to fund 17 promising projects in a single year. Thanks to the generosity and commitment of our donors and volunteer fundraisers, we are moving quickly towards finding treatments that will greatly improve the lives our loved ones with PWS” said Susan Hedstrom, FPWR Executive Director.

About PWS: Prader-Willi syndrome is a rare, genetic disorder affecting approximately 1 in 15,000 people globally. Nearly every system in the body is impacted by a PWS diagnosis but the hallmark symptom is extreme hunger. A person with PWS never feels full.  Coupled with a slow metabolism, individuals with PWS will become extremely obese if their diet is not strictly controlled.  There are currently no effective treatments to regulate appetite in PWS.  Additional associated problems include growth hormone deficiency, behavioral challenges, intellectual disability, anxiety, sleep disturbances, and scoliosis.

About FPWR: The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead healthier and more fulfilling lives. Today, FPWR is composed of thousands of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delay, psychiatric disorders, and autism spectrum disorders. The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. FPWR supports cutting edge research studies around the world to advance the understanding of PWS, and collaborates with research institutions, pharmaceutical companies and the FDA to advance new treatments that will help those with PWS.  To date, FPWR has funded over $4.5 million in PWS research.

Topics: Research

Hannah Berger


Hannah joined the FPWR family in July 2014. With more than 12 years of non-profit fundraising experience, Hannah will provide PR and Communications support and lead all resource development efforts nationally including special campaigns, donor recognition, major gifts philanthropy and volunteer fundraiser support. Hannah is a graduate of the University of California, Irvine and holds a Master’s degree in Public Administration with an emphasis in non-profit sector management.

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