Foundation for Prader-Willi Blog

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

Families and caregivers in the Prader-Willi syndrome (PWS) community whose loved one experiences excessive daytime sleepiness (EDS) know just how challenging it can be in daily life. Data from the Global PWS Registry show that 55% of participants exp...

December 23, 2025 Read More

Topics: Research

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and...

November 25, 2025 Read More

Topics: Research, Parents, Learning

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...

November 14, 2025 Read More

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,...

November 11, 2025 Read More

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.

October 20, 2025 Read More

Topics: Research, Clinical Trials Opportunities

Two Exciting Research Opportunities for Families of Children with PWS

Families of children with Prader-Willi syndrome (PWS), your participation has the power to make a real difference—not only for your own child, but for the PWS community at large. Below are two research studies currently recruiting through the Neurode...

October 7, 2025 Read More

Topics: Research

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 ...

August 19, 2025 Read More

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 ...

July 29, 2025 Read More

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 ...

July 15, 2025 Read More

Topics: Research, Behavior

Foundation for Prader-Willi Blog | Research (3)

Categories

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

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

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

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

Two Exciting Research Opportunities for Families of Children with PWS

What's Happening in PWS Research: Summer 2025

Should I Talk with My Child About Their PWS Diagnosis?

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

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