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New research brings hope for treating the sleep challenges faced by children with PWS and SYS.

Can We Treat Circadian Rhythm Disruption in PWS? New Research Offers Hope

May 7, 2025

Human beings have adapted to our planet's 24-hour days. The body goes through daily cycles that affect things like metabolism, physical functions, and mood—these 24-hour cycles are called the circadian rhythm. What you may not know is that this adaptation

We Need 15 Minutes of Your Time: Help Advance PWS Treatments by Joining the MY-HQ Project

May 1, 2025

We’re excited to share an important opportunity for families in the Prader-Willi syndrome (PWS) community to contribute to groundbreaking research that could help shape the future of treatments for hyperphagia. The MY-HQ ("my hyperphagia questionnaire") project, led by Elizabeth Roof

Summary From the PWS Community Town Hall: Sharing Experiences with VYKAT XR

April 29, 2025

On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for caregivers and guardians to hear more about people's lived experiences with VYKAT XR. Experiences were shared from individuals who participated in the phase 3

PWS Awareness Month: How You Can Support Research

April 22, 2025

May is PWS Awareness Month. Awareness is where it starts. Action moves research forward. Whether you have 30 seconds or 30 days, there’s a way for you to make a difference. Here are 3 ways you can take action this

Three family members smiling together in a field of yellow flowers, with one child giving a thumbs-up and mountains in the background.

Growing Up Alongside PWS: The Hidden Struggles and Strengths of Siblings

April 10, 2025

Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares insights on supporting siblings and recognizing serious mental health challenges in her new guide. Raising a family is never easy, and parenting a child with PWS adds

DCCR (VYKAT XR) Approved for Treating Hyperphagia in Prader-Willi Syndrome

March 26, 2025

We are thrilled to share that the FDA has approved the first treatment for hyperphagia (excessive hunger) in individuals with Prader-Willi syndrome (PWS). VYKAT XR (previously referred to as DCCR) is now approved for adults and children 4 years of

Your Impact 2024

March 13, 2025

Everything we do is made possible by you—our dedicated supporters and partners on this journey. Since 2003, FPWR has been committed to finding and funding the most promising research to advance treatments for Prader-Willi and Schaaf-Yang syndromes. Thanks to your

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepiness at School

March 10, 2025

Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school. For some children living with PWS and excessive daytime sleepiness (EDS), settling into the school year can be a challenge. In fact,

The Power of Representation in the PWS Community

March 4, 2025

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 hopeful.

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