FPWR Receives award from the Moriah Foundation to support the development of a Mental Health Guidebook for Prader-Willi Syndrome

The Foundation for Prader-Willi Research is excited to announce the receipt of a financial award from the Moriah Foundation which will be used to support the development of a Mental Health Guidebook for Prader-Willi Syndrome (PWS). Mental health and behavior challenges affect a large percentage of individuals with PWS and their families. These challenges are often under-appreciated and yet the impact on families and individuals with PWS can be profound. 

With support from the Moriah Foundation, the Foundation for Prader-Willi Research is developing a guidebook which will help families better understand potential early warning signs, the best ways to meet these challenges head on, and work with health care providers to get appropriate care for their loved one with PWS. The guidebook will help families become empowered to cope with these symptoms as they arise, know when to get help and provide reassurance for families going through this difficult aspect of PWS. We expect the Guidebook to be available mid-2020.

FPWR thanks the Moriah Foundation for the support which will make this invaluable resource possible!

Topics: News

Susan Hedstrom

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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 future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.

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