Acadia Pharmaceuticals has initiated its pivotal Phase 3 COMPASS PWS study of carbetocin nasal spray (ACP-101) in the United States. COMPASS PWS is a 12-week study evaluating the efficacy and safety of carbetocin nasal spray for hyperphagia in approx...
A special blog contribution from Abbie Ogilbee Training for an Ironman is no small commitment. It takes planning, preparation, dedicated time away from family, special equipment, and countless hours of practicing the different sports. Preparing for t...
Topics: Stories of Hope
It has been an exciting time for PWS research and clinical trials. The field has been working hard to find effective treatments for the symptoms of PWS to help our children lead more independent and fulfilling lives. In the last several years, there ...
Topics: News, Clinical Issues, Resource Development
One of the most important roles FPWR serves is that of a ‘convener’, bringing together those with an interest in advancing the science of PWS, and the care of those living with PWS. On Oct 5-6, 2023, FPWR held its annual PWS Research Symposium – our ...
A special blog contribution from Karla Leighty. Prior to Lana's birth, our daughter-in-law, Krysten, knew something wasn't right with her pregnancy. The baby wasn't moving as much as she should have been,and the ultrasounds indicated she was smaller ...
Topics: Stories of Hope
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
