Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school.
FPWR
Recent Posts
When Karine’s son, Olivier, was diagnosed with Prader-Willi Syndrome (PWS), she searched for something beyond medical information—she was looking for people who looked like him. She wanted to see a future for her child, one that felt familiar and hop...
Topics: Parents, Partners, PWS People, Advocacy
The Foundation for Prader-Willi Research (FPWR) is excited to announce key updates to its board leadership and membership for 2025. With these changes, FPWR continues to prioritize its mission of eliminating the challenges of Prader-Willi syndrome (P...
On February 7th, the National Institutes of Health (NIH) announced a drastic, immediate reduction in overhead funding for universities, medical centers, and research institutions—cutting indirect costs to a flat 15% rate. This significant reduction j...
Aardvark Therapeutics achieved a major milestone last week by launching its initial public offering (IPO) and joining the NASDAQ as a publicly traded company (ticker symbol AARD). This marks an exciting step forward for Aardvark and for the entire Pr...
Individuals with PWS often exhibit rigidity, obsessive-compulsive tendencies, emotional outbursts, as well as unusual thoughts and behaviors. However, the onset and severity of these behaviors vary among individuals with PWS depending on age, genetic...
The challenges of Prader-Willi syndrome extend beyond the individual diagnosed to the entire family. Siblings growing up in a household with a person with PWS may need extra support to help them navigate their new normal and the unique family situati...
Topics: Resource Development, Parents
A special contribution by guest blogger Will Greene. The future of PWS research depends on more than just scientists—it also needs the voices of parents, caregivers, and PWS advocates to guide meaningful progress. Becoming an Advocate Reviewer for FP...
As 2024 draws to a close, we at the Foundation for Prader-Willi Research (FPWR) are reflecting on a year filled with progress, promise, and hope. This year’s achievements wouldn’t have been possible without the incredible dedication of our community—...
Topics: Research
