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Foundation for Prader-Willi Blog | Stories of Hope

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.

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?

Topics: Stories of Hope, hopefull

Growing Into Independence: Emma’s Journey Continues

It’s been quite a journey since I first wrote about Emma for FPWR. In the years since, she has moved through many milestones, each one bringing its own mix of challenge, growth, and pride.

Topics: Stories of Hope

Why I Will Always Celebrate the Beauty of My Son’s Rareness

A Rare Disease Day Tribute by Rebecca McWilliams, Mom to Kieran In my wildest dreams, I never thought this day would hold such profound meaning for me. Yet when your beautiful child is born and swiftly diagnosed with a disorder that randomly affects ...

Topics: Stories of Hope

A Grandmother’s Hope: Whitnee’s Story

My granddaughter, Whitnee, arrived eight weeks early, and from the very beginning, her journey was anything but ordinary.

Topics: Stories of Hope

Dream, Believe, Achieve

I’m a mom, so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to remember something that was said within the past 5 minute...

Topics: Stories of Hope

One Small Step 2025: A Record-Breaking Year of Impact

One Small Step set out with a bold goal in 2025: raise $250,000 for Prader-Willi syndrome research. Thanks to an unstoppable community, that goal was blown right out of the water. This year, One Small Step raised $354,000, bringing real momentum to b...

Topics: Stories of Hope, PWS People

Artist of the Year 2025 Winners: Celebrating Creativity and Hope

A special blog contribution from our 2025 FPWR Art Auction Participants.

Topics: Stories of Hope

Running for Hope: Meet Team FPWR 2025

They’re parents, siblings, friends, and advocates, and this November, they’ll take on 26.2 miles together for a cause close to their hearts. Meet Team FPWR, a passionate team of athletes raising awareness and accelerating research for Prader-Willi sy...

Topics: Stories of Hope, PWS People