Foundation for Prader-Willi Blog

FPWR 2026 Family Conference: Deep Dive Workshops

At this year's FPWR Family Conference, you'll find more than traditional presentations. Explore interactive workshops featuring expert guidance, practical strategies, and meaningful conversations with other families.

July 15, 2026 Read More

Topics: Parents, Family Conference

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

When Will My Child Reach Milestones? A Look at Development in PWS

Families affected by Prader-Willi syndrome (PWS) often have questions about their child’s development and what they can expect throughout their child’s journey. While every individual with PWS follows their own unique path, data collected through the...

July 8, 2026 Read More

Topics: Research, Global PWS Registry

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

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, 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

FPWR Blog

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FPWR 2026 Family Conference: Deep Dive Workshops

From “What If?” to “What’s Next?”

When Will My Child Reach Milestones? A Look at Development in PWS

How Pretend Play Helps Children with PWS Build Social Skills

How Two Moms Turned Fear Into Action Through One Small Step

What New Parents Can Expect at the FPWR Family Conference

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

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