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...
As Rare Disease Day approaches on February 28, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple:to inspire hope. We ...
Topics: Stories of Hope
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...
Planning for the future can feel overwhelming, but it’s essential for families of individuals with Prader-Willi Syndrome (PWS). At the 2024 FPWR Conference, two experts shared actionable insights into estate planning and insurance benefits, empowerin...
Topics: Parents
The 2024 FPWR Conference opened with a powerful session featuring a panel of experts that left attendees inspired and better equipped to navigate the challenges of PWS. From addressing behavioral challenges to securing effective Individualized Educat...
Topics: Parents
At the 2024 FPWR Conference, the session "Growing Up with a Sibling with PWS" offered a heartfelt and detailed look into the experiences of siblings of children with Prader-Willi Syndrome (PWS). Led by Dr. Lauren Schwartz Roth, a researcher and mothe...
