The Foundation for Prader-Willi Research UK was founded in 2010 by Prader-Willi parents, joining forces with FPWR and FPWR Canada to combat Prader-Willi Syndrome (PWS).

 

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.

 

Research is getting us closer to treatments for hyperphagia, skin picking, behaviour problems to name but a few. Many exceptional project proposals are sent to FPWR every year: research studies that may have the potential to dramatically change our children’s lives. Unfortunately, only a small portion of these grants can be funded, the unfunded grants are postponed: perhaps to be funded in subsequent years or maybe that research opportunity has been lost. So our aim is to continue to raise awareness and funding to enable as many studies to be completed as possible.

 

Today, FPWR is composed of parents, family members, researchers, and others who are dedicated in addressing the many issues related to PWS. To date the FPWR worldwide family has committed over $1.6 MILLION to support PWS related research. FPWR-UK contribution to this is growing each year thanks to support of PWS families across the UK, all with one common goal ‘to better the lives our loved ones through the advancement of research into PWS’.

 

 

How FPWR Operates

Through a professionally managed grant process, FPWR selects research projects based on the collaborative input of researchers and parents, choosing projects that are both scientifically meritorious and highly relevant for the individuals with PWS and their families.

Thirty four research projects have been funded since 2003 covering:

Genetics and pathophysiology of PWS

Development of mouse models of PWS

Hunger, obesity and reward circuits

Development of new therapies for PWS

Understanding sleep disturbances in PWS

Improving academic and learning skills for children with PWS