Foundation for Prader-Willi Blog (7)

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

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 Registr...

June 10, 2025 Read More

Topics: Mental Health, Research, Parents

Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS

Behind the recent FDA approval of the first treatment for hyperphagia in PWS is a powerful story of patient data and community collaboration—driven by the Global PWS Registry.

June 9, 2025 Read More

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

FPWR Blog

Categories

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

Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS

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

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