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Research (4)

Human Growth Hormone Dosing for PWS

June 15, 2025

Human growth hormone therapy for PWS has been proven to improve characteristic delays in physical and social development, and the cognitive benefits of human growth hormone for PWS are well documented too. HGH dosing recommendations for people with PWS have

Life Satisfaction, Global Health, and Mood in PWS: What a New Study Reveals

June 10, 2025

The FPWR research team recently published a new study that helps us better understand mood, general health, and life satisfaction in individuals with Prader-Willi syndrome (PWS). The findings are based on data collected through the Global PWS Registry using three

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

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

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

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

CRISPR Breakthrough Brings New Hope for Treating PWS

February 24, 2025

Exciting research funded by FPWR has brought us one step closer to an effective gene therapy for Prader-Willi syndrome (PWS). Led by Dr. Charles Gersbach, a pioneer in CRISPR technology at Duke University, a team of biomedical engineers has identified

Growing Up With a Sibling With PWS: Insights from the FPWR Conference

December 12, 2024

"Growing Up with a Sibling with PWS," recorded at our 2024 Family Conference, is a heartfelt and detailed presentation that explores the experiences of siblings of children with Prader-Willi Syndrome (PWS). Led by Dr. Lauren Schwartz Roth, a researcher and

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