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Foundation for Prader-Willi Blog | Research (2)

FPWR Awards More Than $2.1 Million in Research Grants in 2025

We are pleased to announce the recipients of our second round of grants for 2025, totaling $925,117 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing innovative research and bold initiatives in Pr...

Topics: Research, Schaaf-Yang Syndrome

Endocrine Care for Children with Prader-Willi Syndrome: 2025 Conference Insights

Understanding the endocrine system is essential for managing Prader-Willi syndrome (PWS). From infancy through adulthood, hormone-related challenges shape growth, development, metabolism, and overall health. In this 2025 FPWR Conference presentation,...

Topics: Therapeutic Development, Research

PWS Clinical Trials: 2025 Conference Recap and How Families Can Help

Clinical trials are the bridge between discovery and real-world treatments, and families in the Prader-Willi syndrome (PWS) community play a critical role in making them possible.

Topics: Research, Clinical Trials Opportunities

What's Happening in PWS Research: Summer 2025

Welcome to an inside look at some of the impactful research taking place to improve the lives of individuals with Prader–Willi syndrome (PWS). In this interview, four FPWR research team members—Theresa Strong, Lauren Schwartz-Roth, Marc Ridilla, and ...

Topics: Research

Should I Talk with My Child About Their PWS Diagnosis?

How should I talk with my child about their PWS diagnosis? This is a question many parents ask as their child grows, and differences between them and their typical peers may become more apparent. Will discussing the PWS diagnosis empower their child ...

Topics: Research

Clinical Trial Results Show Promise for Managing Aggression and Hyperactivity in PWS

A published study on the use of guanfacine extended release (GXR) in individuals with Prader-Willi syndrome (PWS) marks an important step forward, showing that guanfacine can improve challenging PWS behaviors, including aggression, skin-picking, and ...

Topics: Research, Behavior

Acadia’s COMPASS PWS Study Fully Enrolled – Results Expected Early Q4 2025

We’re excited to share that Acadia Pharmaceuticals has officially completed enrollment for its Phase 3 COMPASS PWS clinical trial of ACP-101 in individuals with Prader-Willi syndrome (PWS)—three months ahead of schedule!

Topics: Research

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

Did you know that swallowing issues are extremely common in babies with Prader-Willi syndrome (PWS)? A recent study from Cook Children’s Medical Center (CCMC) in Texas took a closer look—and what they found is something every clinician and parent of ...

Topics: Research, Parents, Children 0-3

Top 10 Learnings from the Global PWS Registry

Thanks to nearly 2,000 participants completing a collective 61,795 surveys, the Global PWS Registry continues to be a vital resource for the PWS community—adding to our body of knowledge, improving how we care for our loved ones, and helping inform a...

Topics: Research, Research Blog