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Foundation for Prader-Willi Blog | Research (2)

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Excessive daytime sleepiness (EDS) is one of those symptoms of Prader-Willi syndrome (PWS) that often does not get the attention it deserves. EDS can profoundly undermine success in older children and adults with PWS. It is hard to learn anything in ...

Topics: Therapeutic Development, Research, Research Blog, Sleep

Are GLP-1s Safe and Effective for People with PWS?

You have probably heard of GLP-1 receptor agonists (GLP-1s). You may even know someone who has successfully lost weight using one of these popular medications. But what about their safety and effectiveness for people with Prader-Willi syndrome (PWS)?

Topics: Hunger Satiety, Obesity and Energy Balance, Research, PWS People

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...

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...

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...

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