Foundation for Prader-Willi Blog (3)

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

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, Carolyn is rallying ...

June 4, 2025 Read More

Topics: Stories of Hope

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

FPWR Announces 1st Round of 2025 Grants

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 S...

May 14, 2025 Read More

Topics: Research, Schaaf-Yang Syndrome

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

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

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 clinical tr...

April 29, 2025 Read More

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

FPWR Blog

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

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

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

FPWR Announces 1st Round of 2025 Grants

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

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

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

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