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Honoring Leaders Who Inspire: 2025 FPWR Award Recipients

August 18, 2025

Each year, the Foundation for Prader-Willi Research (FPWR) recognizes outstanding individuals who have made a profound difference in the lives of those affected by Prader-Willi syndrome. This year, we honored two remarkable leaders for their contributions to the PWS community:

Welcoming Karla Blair and Nicci Peterson to the FPWR Team

August 12, 2025

We’re excited to introduce two new members of the FPWR team: Karla Blair and Nicci Peterson! As parents, advocates, and passionate members of the PWS community, Karla and Nicci bring heartfelt commitment and a personal perspective to our work. Their

Post-Conference Glow: Highlights from United in Hope 2025

July 7, 2025

Still United, Still Inspired We're still riding the wave of connection, energy, and inspiration from United in Hope 2025! This incredible event brought together three powerful organizations - the Foundation for Prader-Willi Research (FPWR), the Prader-Willi Syndrome Association | USA

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

July 2, 2025

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

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

June 10, 2025

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 Registry using three

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

June 9, 2025

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. Through our PATH for PWS study, families shared their lived experiences with

RareCAP: An Important Resource Bringing Expert PWS Care Within Reach

May 19, 2025

Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy, especially in urgent or emergency situations. RareCAP is a free tool that puts trusted PWS medical guidance into the hands of those who need it most: families, caregivers, and

PWS Awareness Month: How You Can Support Research

April 22, 2025

May is PWS Awareness Month. Awareness is where it starts. Action moves research forward. Whether you have 30 seconds or 30 days, there’s a way for you to make a difference. Here are 3 ways you can take action this

Three family members smiling together in a field of yellow flowers, with one child giving a thumbs-up and mountains in the background.

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

April 10, 2025

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 adds

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