We are pleased to announce the recipients of the second round of grants for 2023, totaling $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and Schaaf-Ya...
Did you know that by simply sending a card, you have the power to make a difference in the lives of those affected by Prader-Willi syndrome? It's true! Every time you send a card, you not only spread awareness about this rare genetic syndrome but als...
Topics: Advocacy
Soleno Therapeutics recently shared data from their DESTINY PWS study, an international, placebo-controlled Phase 3 study of DCCR (Diazoxide Choline Controlled-Release) drug trial. To further establish the effects of DCCR administration on hyperphagi...
Topics: News, Hunger Satiety, Research
The Harvesting Hope Distance Challenge is back, and it's your chance to join a heartwarming community, get moving, and make a real difference. Whether you're a seasoned walker, a jogging enthusiast, or someone who just loves the idea of taking positi...
Topics: News
PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR ...
We are excited to share the news that Soleno has announced positive, statistically significant top-line results from the randomized withdrawal period of study c602 of DCCR for Prader-Willi Syndrome. In the study, patients taking DCCR showed a highly ...
It is well known that individuals with Prader-Willi syndrome (PWS) display muscle weakness, hypotonia, and decreased lean muscle mass. Those with PWS have a 25–40% decrease in muscle mass compared to non-affected individuals, and muscle strength is a...
Topics: Research
Attending a conference means being around people who get it—they understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new...
Topics: News
Being a mom and a psychologist, I have often wondered about the impact of growing up with a person with Prader-Willi Syndrome (PWS) on siblings. There are research studies that indicate that growing up with a sibling with a developmental disability c...
