Foundation for Prader-Willi Blog

FPWR

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

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

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 ag...

March 26, 2025 Read More

Topics: News

Your Impact 2024

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. T...

March 13, 2025 Read More

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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

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

Your Impact 2024

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