Foundation for Prader-Willi Blog

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...

October 15, 2025 Read More

Topics: Stories of Hope, PWS People

How 10 FPWR Families Turned Hope Into Action and How You Can Too

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...

September 10, 2025 Read More

Topics: Stories of Hope

From NICU to Leading the Walk: Miles’ Story and the Power of One Small Step

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 ...

June 4, 2025 Read More

Topics: Stories of Hope

Share Your Rare: HopeFull Highlights for Rare Disease Day

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 ...

February 19, 2025 Read More

Topics: Stories of Hope

Meet Team FPWR: A Dynamic Force Running the NYC Marathon for Research

Meet Team FPWR, a powerhouse group of eleven incredible individuals lacing up their sneakers to conquer the New York City Marathon on November 3, 2024! Each runner brings a unique story and a shared passion for supporting Prader-Willi syndrome resear...

September 12, 2024 Read More

Topics: Stories of Hope, PWS People

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned 23), K...

July 10, 2024 Read More

Topics: Stories of Hope, Parents

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Since first tapping into our community 12 years ago, Katie and Adam Larson have been ready to do whatever it takes to find treatments and a brighter future for their son, Graham. From co-hosting One SMALL Step walks to throwing memorable Live Life FU...

June 25, 2024 Read More

Topics: Stories of Hope, Parents

Sharing Strength for PWS Awareness Month

May marks Prader-Willi Syndrome (PWS) Awareness Month, shedding light on the complex genetic disorder that brings various challenges to individuals. However, it's important to remember that PWS doesn't define the incredible individuals living with it...

May 7, 2024 Read More

Topics: Stories of Hope

Share Your Rare: HopeFull Highlights

As Rare Disease Day approaches on February 29, 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...

February 19, 2024 Read More

Topics: Stories of Hope

Foundation for Prader-Willi Blog | Stories of Hope

Categories

Running for Hope: Meet Team FPWR 2025

How 10 FPWR Families Turned Hope Into Action and How You Can Too

From NICU to Leading the Walk: Miles’ Story and the Power of One Small Step

Share Your Rare: HopeFull Highlights for Rare Disease Day

Meet Team FPWR: A Dynamic Force Running the NYC Marathon for Research

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Sharing Strength for PWS Awareness Month

Share Your Rare: HopeFull Highlights

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