Foundation for Prader-Willi Blog

How Two Moms Turned Fear Into Action Through One Small Step

When Amy Reinmuller first considered hosting One Small Step Baton Rouge, the idea stayed in the “maybe someday” category for a long time. Fear kept getting in the way. “What if nobody comes?” she remembered thinking. “What if I can’t pull it off?” Li...

June 26, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

Six-Month Setmelanotide Data Show Benefits in PWS

Rhythm Pharmaceuticals recently shared encouraging six-month results from its ongoing Phase 2 clinical trial of setmelanotide in people with Prader-Willi syndrome (PWS). The findings, presented at ENDO 2026, suggest that treatment with setmelanotide ...

June 16, 2026 Read More

Topics: Research, Clinical Trials, PWS Research, Hyperphagia, Trial Results

Addison's Army Started with One Small Step

The night before One Small Step Maryland, Jen Lieberman was worried nobody would come. By the next morning, her family was scrambling to find more raffle tickets. "My brother-in-law literally ran to Staples," Jake laughed. "We were looking around thi...

June 12, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

What’s Sending People with PWS to the Emergency Department?

When you’re caring for someone with Prader-Willi syndrome (PWS), you become an expert at navigating complex medical and behavioral needs. But even with the best care, emergencies can still happen. A new study, funded by FPWR and led by Dr. James Lucc...

May 27, 2026 Read More

Topics: Clinical Issues, Research

FPWR Awards Seven New Research Grants in First Funding Round of 2026

We are pleased to announce the recipients of FPWR's first round of grants in 2026, totaling more than $1 million in funding to support innovative research and bold initiatives in Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS).

May 21, 2026 Read More

Topics: Research, Schaaf-Yang Syndrome

Parents Seek Answers, Leaders Step Forward

In January 2008, The Dallas Morning News published an article titled “Parents Seek Answers.” At the center of the story was Kathryn McGhee, a mother navigating the daily realities of Prader-Willi syndrome while also helping shape a growing research m...

May 10, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

PWS Clinical Trials Alert

FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (...

May 1, 2026 Read More

Topics: Research

Research insights into learning and behavior in PWS

Research into learning and behavior in PWS continues to provide valuable insights into how individuals with PWS experience the world and how caregivers can better support them. Two research studies explore important aspects of how individuals with PW...

May 1, 2026 Read More

Topics: Research

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

Families raising a child with Prader-Willi syndrome know how difficult temper outbursts can be. In the study “The Characteristics of Temper Outbursts in Prader-Willi Syndrome,” Drs. Rice, Einfeld, and Woodcock, experts in the field of PWS, took a clo...

April 29, 2026 Read More

Topics: Research

Foundation for Prader-Willi Blog | Research

Categories

How Two Moms Turned Fear Into Action Through One Small Step

Six-Month Setmelanotide Data Show Benefits in PWS

Addison's Army Started with One Small Step

What’s Sending People with PWS to the Emergency Department?

FPWR Awards Seven New Research Grants in First Funding Round of 2026

Parents Seek Answers, Leaders Step Forward

PWS Clinical Trials Alert

Research insights into learning and behavior in PWS

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

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