Biorepositories play a crucial role in rare disease research, acting as a central location to collect, store, and distribute samples such as tissues, blood, and cells from individuals. The Foundation for Prader-Willi Research, in partnership with COMBINEDBrain, has established a SYS biorepository of blood, urine, and saliva samples that will help speed treatments for people with SYS. 
Samples collected from our SYS community are available to researchers worldwide, supporting their efforts to identify biomarkers and conduct molecular investigations. Importantly, storing these samples in a biobank will ensure their long-term availability for future research.
We need your help to gather blood and urine samples from people with PWS and SYS
Dr. Althammer has been studying the oxytocin system and its potential role in SYS. His latest project looks at whether oxytocin levels in individuals with SYS differ from those of typical individuals. To answer this, he needs saliva samples from people with SYS—and our community can help make that happen.
Are you in the Atlanta area? This December, you can play a direct role in advancing SYS research! COMBINEDBrain will be collecting samples from people with SYS on December 4th and 5th in Atlanta, GA (location tbd). While saliva collection is the primary focus, families are also invited to consider donating blood and urine samples, which could provide even more valuable insights for researchers. To participate, email Lisa.Matesevac@fpwr.org.
FPWR is proud to be driving innovative ways to move treatments forward for SYS. Through our partnership with COMBINEDBrain and Dr. Ferdinand Althammer at the University of Heidelberg, we’re ensuring that researchers have the necessary resources to answer critical questions. We thank everyone in our community who has contributed a sample to the SYS biobank - every sample collected brings us closer to treatments that can change lives.
