Topics: Stories of Hope
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 ...
My granddaughter, Whitnee, arrived eight weeks early, and from the very beginning, her journey was anything but ordinary.
Topics: Stories of Hope
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 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
A special blog contribution from our 2025 FPWR Art Auction Participants.
Topics: Stories of Hope
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
Thinking about fundraising for PWS research but not sure where to start? You’re in good company! These 10 parents all started in the same place—unsure, maybe even a little intimidated. But they took the leap. Not because it was easy, but because they...
Topics: Stories of Hope
When Carolyn’s son Miles was diagnosed with Prader-Willi syndrome, she faced a new world of unknowns. But it didn’t take long for her to channel that uncertainty into action. Now, in her second year hosting a One Small Step walk, Carolyn is rallying ...
Topics: Stories of Hope
As Rare Disease Day approaches on February 28, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple:to inspire hope. We ...
Topics: Stories of Hope






