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FPWR Blog

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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

What New Parents Can Expect at the FPWR Family Conference

The early years after a PWS diagnosis come with a lot of questions. The New Parent Track is designed to help you build knowledge, confidence, and connections with families who understand exactly where you are.
June 17, 2026 Read More

Topics: Parents, Adults, Children 0-3, Advocacy

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

Team FPWR Takes on the 2026 TCS New York City Marathon

This year’s Team FPWR roster is something special. Our 2026 runners come from all over the country and are running for daughters, cousins, sisters, friends, nieces, and aunts impacted by Prader-Willi syndrome and Schaaf-Yang syndrome. Among them is a...
June 10, 2026 Read More

Topics: Stories of Hope, PWS People

Spinal Fusion Surgery in Prader-Willi Syndrome: Preparing for Surgery and Recovery

This article includes personal experiences shared by Lisa Matesevac and clinical guidance from Dr. Harold van Bosse, MD
June 5, 2026 Read More

Understanding Scoliosis in Prader-Willi Syndrome: From Early Curves to Surgical Decisions

Scoliosis is a common orthopedic complication in Prader-Willi syndrome (PWS), affecting the majority of individuals at some point during infancy, childhood, or adolescence. Scoliosis in PWS is not the same as the more familiar forms of scoliosis. Dif...
June 3, 2026 Read More

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

Phase 2 Clinical Trial for Prader-Willi Syndrome Now Enrolling: CSTI-500

A new phase 2 study is evaluating CSTI-500, an investigational medication being developed to address some of the most challenging symptoms of PWS, including hyperphagia and behavioral dysregulation. Researchers will study the safety, tolerability, an...
May 22, 2026 Read More

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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