Foundation for Prader-Willi Blog

FPWR

When the Impossible Becomes Everyday: A PWS Story

By Guest Blogger Tammy Galloway I have started this story many times, and each time I find myself focusing on different parts of our journey. In the early days, doctors told us what my son Kyle would likely never do. They told us what to expect, and ...

July 24, 2026 Read More

Topics: Stories of Hope

From “What If?” to “What’s Next?”

Bath time has just finished, and the sun is setting. Our daughter’s nightly routine is about to begin. What may be bath and story time for most families is just the beginning for us.

July 10, 2026 Read More

Topics: Stories of Hope

How Pretend Play Helps Children with PWS Build Social Skills

Many parents wonder how to help their child build friendships, understand emotions, and navigate everyday social situations. One powerful—and often overlooked—tool is pretend play. In this blog, guest contributor Rachel Gordon from the Neurodevelopme...

July 1, 2026 Read More

Topics: Behavior

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

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

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

Topics: Scoliosis

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

Topics: Scoliosis

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Recent Posts

When the Impossible Becomes Everyday: A PWS Story

From “What If?” to “What’s Next?”

How Pretend Play Helps Children with PWS Build Social Skills

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

Team FPWR Takes on the 2026 TCS New York City Marathon

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

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

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