Foundation for Prader-Willi Blog

FPWR

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

Did you know that swallowing issues are extremely common in babies with Prader-Willi syndrome (PWS)? A recent study from Cook Children’s Medical Center (CCMC) in Texas took a closer look—and what they found is something every clinician and parent of ...

July 2, 2025 Read More

Topics: Research, Parents, Children 0-3

HERO Study Now Enrolling People With PWS

A new clinical trial aims to provide relief from hyperphagia for people with Prader-Willi Syndrome. HERO is a global Phase 3 clinical trial investigating ARD‑101, an investigational oral medication aimed at reducing hyperphagia. This trial is current...

June 12, 2025 Read More

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

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 in cell function and is missing or alter...

May 27, 2025 Read More

Topics: Research, Schaaf-Yang Syndrome

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy—especially in urgent or emergency situations. That’s why we’re excited to introduce a new tool that puts trusted PWS medical guidance into the hands of those who need it m...

May 19, 2025 Read More

Topics: Resource Development, Parents, Advocacy

Clinical Trials Matter: Three PWS Families Share Their Views

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.

May 13, 2025 Read More

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

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 adapt...

May 7, 2025 Read More

Topics: Research, Sleep

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

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 questionnair...

May 1, 2025 Read More

Topics: Hunger Satiety, Research, Parents, Adults, Children 12-18

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

Much of the research supported by FPWR is considered “basic science” or “discovery” research. The goal of these projects is to make measurements and collect data that define Prader-Willi syndrome (PWS) and advance our understanding of the molecular b...

April 24, 2025 Read More

Topics: News

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

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 ad...

April 10, 2025 Read More

Topics: Resource Development, Research, Parents

FPWR Blog

Categories

FPWR

Recent Posts

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

HERO Study Now Enrolling People With PWS

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

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

Clinical Trials Matter: Three PWS Families Share Their Views

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

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

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

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

About FPWR

Main Menu

Our Mission

Contact Us