Foundation for Prader-Willi Blog

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

From the NICU to Hosting a Walk for Prader-Willi Syndrome Research

For lack of a better phrase to emphasize the heaviness and intensity of the beginning: those days were hard.

April 3, 2026 Read More

Topics: Stories of Hope, hopefull

A Grandmother’s Love: Showing Up for Miles and the PWS Community

When our family learned that Miles had Prader-Willi syndrome, everything changed. I had never heard of PWS before, and I was in shock. I was scared and heartbroken for Josh and Carolyn. All I could think was, What are we going to do?

March 28, 2026 Read More

Topics: Stories of Hope, hopefull

Foundation for Prader-Willi Blog | hopefull

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Addison's Army Started with One Small Step

Parents Seek Answers, Leaders Step Forward

From the NICU to Hosting a Walk for Prader-Willi Syndrome Research

A Grandmother’s Love: Showing Up for Miles and the PWS Community

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