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Partnership with CombinedBrain Establishes Biorepository for PWS & SYS

FPWR has partnered with COMBINEDBrain to collect & store blood and urine samples for PWS research.


Biorepositories play a crucial role in rare disease research, serving as central locations for collecting, storing, and distributing samples such as tissues, blood, and cells. The Foundation for Prader-Willi Research, in partnership with COMBINEDBrain, has established PWS and SYS biorepositories for blood, urine, and saliva samples that will help accelerate the development of treatments for our community.

Our biorespository samples are available to researchers worldwide, supporting efforts to identify biomarkers and conduct molecular investigations. Importantly, storing these samples within a dedicated biobank ensures their long-term availability for future studies.

Creating resources, like biorepositories, ensures researchers have the tools they need to drive discoveries forward. We are deeply grateful to the families whose past contributions have helped build the biobank—this shared resource is already strengthening research efforts and bringing the field closer to meaningful treatments.

 

 

 

FPWR Enewsletter

Topics: PWS People, Volunteer, Schaaf-Yang Syndrome

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.