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Stories of Hope (2)

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

April 3, 2026

For lack of a better phrase to emphasize the heaviness and intensity of the beginning: those days were hard. For those who have walked this path, you’ll resonate with those initial feelings: fear, grief, shock, and overwhelm intertwined with an

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

March 28, 2026

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

Growing Into Independence: Emma’s Journey Continues

March 23, 2026

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. Emma successfully (with much support) navigated

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

February 18, 2026

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

A Grandmother’s Hope: Whitnee’s Story

February 9, 2026

My granddaughter, Whitnee, arrived eight weeks early, and from the very beginning, her journey was anything but ordinary. Soon after her birth, Whitnee was airlifted by helicopter to Cook Children’s Medical Center. The small hospital where she was born quickly

Dream, Believe, Achieve

January 5, 2026

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

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

December 11, 2025

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

Artist of the Year 2025 Winners: Celebrating Creativity and Hope

November 4, 2025

A special blog contribution from our 2025 FPWR Art Auction Participants. Our 2025 Artist of the Year competition was a tremendous success, raising more than $25,000 to advance Prader-Willi and Schaaf-Yang syndrome research! We are deeply grateful to every extraordinary

Running for Hope: Meet Team FPWR 2025

October 15, 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 syndrome. Each has

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