Topics: Research
In this 36-minute Return of Results session, David Ryman of Levo Therapeutics provides insights into the Phase 3 clinical trial of carbetocin, including next steps for making the drug available to treat hyperphagia and anxiety behaviors in PWS. This ...
A new study sheds light on the clinical characteristics of Schaaf-Yang Syndrome in adults. In addition to other important findings, the study suggests there is more overlap between PWS and Schaaf-Yang Syndrome than previously understood, and confirms...
Topics: Research
Soleno Therapeutics continues to progress their novel therapeutic, DCCR, forward as a potential treatment of hyperphagia in PWS. On November 12th, Soleno met with the FDA to discuss the best path forward for DCCR. In their most recent press release, ...
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...
Join Dr. Theresa Strong and the FPWR Research Team to learn more about what is happening in PWS research. In this 68-minute video, the FPWR Research Team members summarize highlights, recent findings and the latest on PWS research and available resou...
Topics: Research
Originally published in August 2020, this blog has been updated with significant new data. The Global PWS Registry launched a survey this summer to capture the impact of COVID-19 on PWS families, and how our community is navigating this unprecedented...
Topics: Research
PWS clinical trials are taking place around the world to help us understand Prader-Willi syndrome and investigate new treatments. In this 60-minute video, Dr. Strong summarizes the drug development pathway, followed by trial representatives describin...
Topics: Research
A special contribution by guest blogger Joni Augustine. Joni shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Branden was born 30 years ago, before there were so many wonderful resources. I was to...
Topics: Stories of Hope
High quality sleep is essential to a child’s growth and development. Obstructive sleep apnea (OSA) occurs when the muscles in the airway relax during sleep, causing a narrowing or closure of the airway, with temporary interruptions of breathing and s...