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

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

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

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

The Global PWS Registry: Turning Lived Experience Into Better Care

Families living with Prader-Willi syndrome are changing how PWS is understood, studied, and treated.

February 24, 2026 Read More

Topics: News, Research, Parents

Anxiety and Repetitive Behaviors in PWS: Understanding the Cycle and Ways to Help

This blog is based on the presentation “Managing Repetitive Behaviors & Improving Motivation,” given by Elizabeth Roof.

February 4, 2026 Read More

Topics: Parents, Behavior

Self-Care for Caregivers: Your Well-Being Matters

Caring for a child or adult with Prader-Willi syndrome (PWS) often means juggling medical appointments, behavior plans, daily routines, and the emotional ups and downs that come with them. Too often, caregivers put their own needs last — not because ...

December 9, 2025 Read More

Topics: Parents

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and...

November 25, 2025 Read More

Topics: Research, Parents, Learning

Managing Behavior and Flexibility in PWS: Expert Strategies

Behavioral challenges are one of the most complex parts of Prader-Willi syndrome (PWS). Anxiety, rigidity, difficulty with transitions, and emotional overwhelm can affect daily life at home, at school, and in the community. Families often ask: Will t...

November 18, 2025 Read More

Topics: Parents, Behavior

Foundation for Prader-Willi Blog | Parents

Categories

How Two Moms Turned Fear Into Action Through One Small Step

What New Parents Can Expect at the FPWR Family Conference

Addison's Army Started with One Small Step

Parents Seek Answers, Leaders Step Forward

The Global PWS Registry: Turning Lived Experience Into Better Care

Anxiety and Repetitive Behaviors in PWS: Understanding the Cycle and Ways to Help

Self-Care for Caregivers: Your Well-Being Matters

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Managing Behavior and Flexibility in PWS: Expert Strategies

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