Foundation for Prader-Willi Blog (3)

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

May is #PWSAwareness Month!

Each May, our community comes together to shine a light on Prader-Willi syndrome and accelerate the research that is driving new treatments and transforming lives. Since 2010, PWS Awareness Month has mobilized families, advocates, and allies across t...

April 22, 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

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepiness at School

Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school.

March 10, 2025 Read More

The Power of Representation in the PWS Community

When Karine’s son, Olivier, was diagnosed with Prader-Willi Syndrome (PWS), she searched for something beyond medical information—she was looking for people who looked like him. She wanted to see a future for her child, one that felt familiar and hop...

March 4, 2025 Read More

Topics: Parents, Partners, PWS People, Advocacy

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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

May is #PWSAwareness Month!

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

School Interrupted: Three Families Share their Experiences with PWS and Excessive Daytime Sleepiness at School

The Power of Representation in the PWS Community

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