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Partnership with CombinedBrain Will Establish Biorepository for PWS & SYS

FPWR has partnered with COMBINEDBrain to collect & store blood and urine samples for PWS research. Specimens will be collected at ROADSHOW events this year.

partnership-with-combinedbrain-will-establish-biorepository-for-pwsThe Foundation for Prader-Willi Research has partnered with COMBINEDBrain to establish a biorepository of blood and urine samples that will help speed treatments for people with PWS and other neurodevelopmental disorders. 

Biorepositories play a crucial role in rare disease research, acting as central location to collect, store, and distribute samples such as tissues, blood, and cells from individuals. Samples collected for our PWS-COMBINEDBrain Biorepository will be made available to researchers across the world to support biomarker discovery and molecular investigations, and will ensure the long-term availability of these rare disease samples for future research. We are particularly excited about the possibility of identifying biomarkers for PWS, because these may be useful in measuring the effectiveness of new treatments in PWS clinical trials.  

We need your help to gather blood and urine samples from people with PWS and SYS.

We have a unique opportunity to collect these samples in collaboration with the COMBINEDBrain team. They will be collecting specimens at conferences and meetups across the country between now and the end of the year. You can visit the team at a roadshow event near you and donate a specimen for deposit into the PWS-COMBINEDBrain Biorepository.

People diagnosed with PWS, SYS, and other neurodevelopmental disorders can provide a blood sample at NO COST at any of the following events:

For more information and to sign up for one of our roadshow events, please email Lisa Matesevac at FPWR:  

FPWR Enewsletter

Topics: PWS People, Volunteer, SYS

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.