Research Blog

Our FPWR funded researchers are working hard to eliminate the challenges of PWS. How about spreading some cheer this season by sending a holiday card thanking them for their work? Mailing addresses for FPWR's currently funded researchers are below or can be downloaded here. 
Source: FPWR Blog | Published: November 11 2018 - 07:34 AM
The Foundation for Prader-Willi Research and the Angelman Syndrome Foundation are funding the world’s largest newborn screening study for four rare genetic disorders: Angelman, Prader-Willi, Fragile X and Dup15q syndromes. The Victorian Medical Research Acceleration Fund this year also contributed...
Source: FPWR Blog | Published: November 11 2018 - 09:03 AM
On Wednesday, October 10th, the inaugural Live Life Full DC took place at Army Navy Country Club in Arlington, VA. The event raised nearly $300,000 for PWS research and included guest speakers President Bill Clinton, Special Olympic Chairman, Tim Shriver, and Gold Medalist Special Olympic Swimmer,...
Source: FPWR Blog | Published: October 10 2018 - 11:06 AM
In celebrating five years of success with its comprehensive patient registry, the National Organization for Rare Disorders (NORD) has called special attention to FPWR’s PATH for PWS study. The study stems from improvements made to the NORD registry that allow greater collaboration and engagement...
Source: FPWR Blog | Published: October 10 2018 - 08:00 AM
FPWR is happy to announce that Lisa Matesevac has joined our team as our coordinator for the PATH for PWS Study, facilitating families’ involvement in the study. PATH for PWS will help us understand the medical complications that people with PWS experience, and what factors can decrease or increase...
Source: FPWR Blog | Published: October 10 2018 - 08:00 AM