Best Idea Grants for Hyperphagia in Prader-Willi Syndrome Announced

The Prader-Willi Syndrome Association (USA) and The Foundation for Prader-Willi Research (FPWR) announce support for three research grants aimed at advancing the understanding and treatment of hyperphagia in Prader-Willi syndrome (PWS).  Hyperphagia, or excessive hunger, is a defining feature of PWS, a rare genetic disorder. Individuals with PWS require constant supervision and highly restricted access to food or they will rapidly develop life-threatening obesity. Compounding the problem, a slower than normal metabolism means that people with PWS require far fewer calories than those in the general population.  Constant hunger is part of life for those with PWS.

Research projects were submitted in response to a request for “Best Idea Grant” proposals, following the second International Hyperphagia Meeting at the Pennington Biomedical Institute in Baton Rouge, Louisiana in late 2012.  This meeting brought together leading scientists in obesity, appetite and PWS research, to share findings and generate new ideas about hyperphagia.  Grant proposals submitted for consideration were reviewed by world experts in hyperphagia and PWS.  Funding to support the research is provided by One SMALL Step walks, an international fundraising effort in the PWS community.

Three projects have been selected for funding. Dr. Rudolf Leibel of Columbia University will use stem cells derived from individuals with PWS to learn how loss of a key PWS-region gene leads to hyperphagia.  Dr. James Houghland of Syracuse University will develop a drug to target ghrelin, a ‘hunger hormone’ that is abnormally high in persons with PWS.  Dr. Eric Hollander of Albert Einstein School of Medicine will determine if treatment with oxytocin curbs appetite and improves behavior in children with PWS.  Additional support for Dr. Hollander’s project is provided by Prader-Willi Angels.

“We’re thrilled to be collaborating with PWSA(USA) to support these exciting projects to improve the lives of those with PWS.  Currently, hyperphagia and the resulting life threatening obesity represent the major obstacle to healthier, more independent lives for those with PWS” said Theresa Strong, Chair of FPWR’s Scientific Advisory Board.  Ken Smith, Executive Director of PWSA(USA) agreed.  “These cutting edge research projects will help us better understand what drives hunger in PWS, and how we might reduce the burden of hunger in people with PWS.  We also believe that insights into hunger and satiety in PWS will provide a window into understanding the obesity epidemic in the general population.”

About the Prader-Willi Syndrome Association (USA) (

For over 35 years PWSA (USA) has taken the lead, internationally, in raising vital funds, promoting key advocacy and encouraging collaborative research in support of Prader-Willi syndrome and providing support and educational materials for families and caregivers. Hyperphagia and obesity are cardinal features of PWS and a focus of its research efforts.

About the Foundation for Prader-Willi Research (FPWR) (

Established in 2003, the mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. FPWR is dedicated to fostering and supporting research that will advance the understanding and treatment of PWS, allowing individuals with PWS to lead more healthy and fulfilling lives.

About Prader-Willi Angels (

Founded in 2011 by Jeannine & Jerry Kowal after their daughter Caitlin was diagnosed with PWS, Prader-Willi Angels (PWA) seeks to raise funds to support research initiatives geared toward solving the challenges of PWS, with a particular focus on curing hyperphagia. PWA partners with fellow research-oriented organizations to help accomplish its goals.

About One SMALL Step

The One SMALL Step walks for Prader-Willi syndrome research are an international, PWS community-wide fundraising effort.  In 2013, One SMALL Step walks were held in more than 70 locations around the world, and raised more than $1.3 million to support PWS research.

About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s