Foundation for Prader-Willi Blog (2)

The Power of Representation in the PWS Community

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...

March 4, 2025 Read More

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...

February 24, 2025 Read More

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...

February 24, 2025 Read More

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...

February 20, 2025 Read More

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 ...

February 19, 2025 Read More

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...

February 17, 2025 Read More

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...

February 7, 2025 Read More

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...

February 4, 2025 Read More

Topics: Resource Development, Parents

Help Drive Progress: Become an Advocate Reviewer for PWS Research

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...

January 28, 2025 Read More

Topics: Parents, Advocacy

FPWR Blog

Categories

The Power of Representation in the PWS Community

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

CRISPR Breakthrough Brings New Hope for Treating PWS

Urgent Action Needed: NIH Cuts Threaten Critical Research

Share Your Rare: HopeFull Highlights for Rare Disease Day

Aardvark IPO Brings $94M to PWS Drug Development

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

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

Help Drive Progress: Become an Advocate Reviewer for PWS Research

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