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Evaluating Exercise Programs for People with PWS: New Study

Two PWS research groups are supporting a new study evaluating the effects of various exercise programs on muscle strength and size in people with PWS.

progressive-strength-training-for-people-with-pws-new-collaborationThe Foundation for Prader-Willi Research and the Prader-Willi Research Foundation Australia are jointly supporting a new research project, led by Dr. Nora Shields of La Trobe University, evaluating the effects of exercise training in individuals with PWS.


Funding provided by the two organizations will provide top-up funding for a PhD scholarship from La Trobe University in Melbourne. The PhD scholar will join a team of researchers who have received funding from the Australian government, through the Medical Research Future Fund: Rare Cancers, Rare Diseases and Unmet Need program.

“People with PWS have smaller and weaker muscles which makes it difficult for them to do daily activities, to exercise and to control their weight.” Professor Shields said. “Exercise could help people with PWS build up their muscles, burn off extra calories and encourage them to become more active.”

In this study, Dr. Shields, a Professor of Physiotherapy, will oversee a 6-month exercise program and evaluate whether the program makes it easier for people with PWS to complete daily tasks and is cost-effective.

“We’re excited to partner with the Prader-Willi Research Foundation of Australia to accelerate this important study.  Optimizing exercise in PWS is critical to helping individuals with PWS lead active, healthy and fulfilling lives”, said Theresa Strong, Director of Research Programs for the Foundation for Prader-Willi Research.

“PWRFA is sharply focused on improving life outcomes for people with PWS and their families and we are proud to be partnering with our international colleagues on this important study,” said Kathleen Jones, CEO of the Prader-Willi Research Foundation Australia.

Outcomes of this study will improve clinical care for people with PWS by making available online resources and best practice to help families, exercise professionals, and health agencies implement appropriate exercise training regimens for people with PWS.

Professor Shields will collaborate with La Trobe colleagues Professor Nicholas Taylor, Professor Christine Bigby, and Associate Professor Luke Prendergast, as well as researchers from the University of Melbourne, the University of Sydney, and Deakin University.

Several hospitals around Australia will also take part in the trial.

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Topics: News, 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 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.