Foundation for Prader-Willi Blog (6)

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

Planning for the Future: Estate and Insurance Insights for Families

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...

January 21, 2025 Read More

Topics: Parents

Navigating PWS: Stories, Strategies, and Insights from the FPWR Conference

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...

January 8, 2025 Read More

Topics: Parents

Growing Up With a Sibling With PWS: Insights from the FPWR Conference

"Growing Up with a Sibling with PWS," recorded at our 2024 Family Conference, is a heartfelt and detailed presentation that explores the experiences of siblings of children with Prader-Willi Syndrome (PWS). Led by Dr. Lauren Schwartz Roth, a research...

December 12, 2024 Read More

Topics: Research, Parents

Inside FPWR’S Research Program: An Interview with the Research Team

Welcome to an inside look at some of the impactful research FPWR is supporting to improve the lives of individuals with Prader-Willi syndrome (PWS). In this interview, four of our dedicated research team members—Theresa Strong, Marc Ridilla, Lisa Bur...

December 10, 2024 Read More

Topics: Research, Research Blog

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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

Planning for the Future: Estate and Insurance Insights for Families

Navigating PWS: Stories, Strategies, and Insights from the FPWR Conference

Growing Up With a Sibling With PWS: Insights from the FPWR Conference

Inside FPWR’S Research Program: An Interview with the Research Team

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