Foundation for Prader-Willi Blog

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

Mom of Triplets Celebrates Son's Progress, Finds Hope In PWS Research

A special contribution by Lindsey Larson, Host of Live Life Full Lewistown, IL Being a first time mom is hard. Having triplets makes it even more challenging. Add to that a rare diagnosis, and it’s ... well, interesting is the only word that I can fi...

January 1, 2024 Read More

Topics: Stories of Hope

Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

A special blog contribution from Abbie Ogilbee Training for an Ironman is no small commitment. It takes planning, preparation, dedicated time away from family, special equipment, and countless hours of practicing the different sports. Preparing for t...

December 5, 2023 Read More

Topics: Stories of Hope

Grandma Runs the NYC Marathon in Honor of Grandchild

A special blog contribution from Karla Leighty. Prior to Lana's birth, our daughter-in-law, Krysten, knew something wasn't right with her pregnancy. The baby wasn't moving as much as she should have been,and the ultrasounds indicated she was smaller ...

November 15, 2023 Read More

Topics: Stories of Hope

Foundation for Prader-Willi Blog | Stories of Hope

Categories

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

Mom of Triplets Celebrates Son's Progress, Finds Hope In PWS Research

Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

Grandma Runs the NYC Marathon in Honor of Grandchild

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