Topics: News
We need your help and there has never been a better time to DOUBLE your impact! From now until Thanksgiving, EVERY donation made to our organization will be MATCHED by Leon and Irina Shaulov.
A special contribution by guest blogger Elizabeth DeSimone Elizabeth shared her story via our Stories of Hope questionnaire.
Topics: Stories of Hope
A special contribution by guest blogger Natalie Neto Natalie shared her story via our Stories of Hope questionnaire.
Topics: Stories of Hope
Prader-Willi syndrome is a complex genetic disorder affecting nearly every system in the body. A challenge with this level of complexity requires a well thought out strategy to overcome. The Foundation for Prader-Willi Research, with the input of com...
Topics: Research
Mental health professionals have published 10 recommendations for Prader-Willi syndrome (PWS) research. These recommendations create urgency for further research and treatments to improve quality of life and increase independence for people with PWS....
Topics: Research
Dr. Stefan Stamm has been actively involved in the PWS research community for a number of years. His group has received FPWR funding to explore the complex biology of SNORD115 and SNORD116 in PWS, as well as pursue ways to rescue the function of thes...
Topics: Research
The Patient-Centered Outcomes Research Institute (PCORI) has awarded FPWR $30,000 to support real world data research readiness in the Prader-Willi syndrome community! This support was awarded to FPWR as a Eugene Washington PCORI Engagement Award.
Topics: News
Muscle weakness (hypotonia) is often the most obvious first symptom in newborns with PWS. While hypotonia in infants is most severe, low muscle tone continues to limit endurance and reduce participation in daily activities in children and adults with...
Topics: Research
All individuals are born with two copies of chromosome 15: one copy comes from the mother, the other the father. In the case of Prader-Willi syndrome, the paternal copy is missing a portion of the chromosome (deletion), or is gone altogether(UPD), bu...
Topics: News