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From NICU to Leading the Walk: Miles’ Story and the Power of One Small Step

June 4, 2025

When Carolyn’s son Miles was diagnosed with Prader-Willi syndrome, she faced a new world of unknowns. But it didn’t take long for her to channel that uncertainty into action. Now, in her second year hosting a One Small Step walk,

Inside the Cell: MAGEL2 Mislocalization and What It Means for SYS Research

May 27, 2025

What if the key to treating a rare genetic condition lies not just in whether a protein is present—but in where it ends up inside the cell? This is the case with the MAGEL2 protein, which plays a critical role

RareCAP: An Important Resource Bringing Expert PWS Care Within Reach

May 19, 2025

Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy, especially in urgent or emergency situations. RareCAP is a free tool that puts trusted PWS medical guidance into the hands of those who need it most: families, caregivers, and

FPWR Announces 1st Round of 2025 Grants

May 14, 2025

We are pleased to announce the recipients of our first round of grants for 2025, totaling $1,198,949 in awards, as part of the Foundation for Prader-Willi Research’s (FPWR) ongoing commitment to advancing research in Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome

Clinical Trials Matter: Three PWS Families Share Their Views

May 13, 2025

Harmony Biosciences recently met with three families impacted by Prader-Willi syndrome (PWS) to better understand their views on clinical trials for PWS symptoms including excessive daytime sleepiness. A lot has changed since PWS was first identified and named in 1956,

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

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