Roadmap for the Future: The PWS Research Plan 2017-2021

roadmap-for-the-future-the-pws-research-plan-2017-2021-a.jpgPrader-Willi syndrome is a complex genetic disorder affecting nearly every system in the body. A challenge with this level of complexity requires a well thought out strategy to overcome. The Foundation for Prader-Willi Research, with the input of community stakeholders, has developed a strategic research plan for Prader-Willi syndrome for the next 5 years that will allow us to execute our programs in the most efficient manner possible. 

Over the last decade, we've seen many advances in our understanding of the fundamental mechanisms underlying PWS. These results have paved the way for the first drugs being currently tested in clinical trials for PWS patients and the development of promising therapies to address the root causes of the syndrome. In this time of unprecedented hope and promise for PWS patients, we’re excited to announce an ambitious 5-year strategic plan to accelerate the development of therapies that will address the causes of PWS and alleviate its symptoms. The estimated cost of completing the entire plan is $26,000,000.

Transforming PWS Research

Our Director of Translational Research, Nathalie Kayadjanian, describes the plan this way: “The FPWR strategic research plan is a roadmap of initiatives that encompasses programs, tools and policies to fill fundamental knowledge gaps, enable the development of transformative tools, foster innovative research and facilitate inter-disciplinary collaboration to address gaps and challenges at all stages along the therapeutic development pathway." Theresa Strong, Director of Research Programs, adds “We believe that as patient representatives, we are in a unique position to synergize and transform research efforts into meaningful therapies for our loved ones with PWS.”

Summary of Research Plan

Through the management of a world-class grants program, the implementation of translational research programs, and the development of critical PWS research tools, FPWR will advance PWS research in order to develop new treatments and improve the health and well being of those with PWS. Shorter-term goals of evaluating existing approaches to improve health and quality of life will be balanced with support of longer-term, potentially transformative therapeutic development.

FPWR is focused on funding research that will lead to treatments and a cure for PWS. Thanks to our many supporters, our organization has experienced exponential growth over the past several years and we are excited to begin the next chapter of PWS research. Our increasingly directed research programs will ensure that the priorities of the PWS community remain at the forefront and will accelerate progress made towards future treatments.

Steps are already underway to advance progress on the Research plan in 2017. Learn more about the plan, its programs and the critical research tools necessary for its success by visiting the research plan page on our website.

You Can Help Ensure the Plan Is Completed

Help change the future of our loved ones with PWS by making a personal contribution or fundraising for FPWR! Get started by visiting our fundraising page.

take action for pws research fundraising tool


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.

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