New call-to-action
New call-to-action
New call-to-action

FPWR Blog

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepiness at School

Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school.

Topics: Parents, Partners, PWS People, Advocacy

FPWR Announces Executive Committee Appointments and Welcomes New Board Members for 2025

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...

CRISPR Breakthrough Brings New Hope for Treating PWS

Exciting new research funded by FPWR has brought us one step closer to an effective gene therapy for Prader-Willi syndrome (PWS). Led by Dr. Charles Gersbach, a pioneer in CRISPR technology at Duke University, a team of biomedical engineers has ident...

Urgent Action Needed: NIH Cuts Threaten Critical Research

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...

Share Your Rare: HopeFull Highlights for Rare Disease Day

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 IPO Brings $94M to PWS Drug Development

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...

New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS

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...

New Resource for Parents: Helping Siblings Thrive in a PWS Family

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