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Foundation for Prader-Willi Blog | 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...

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...

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 ...

Topics: Stories of Hope

Artist of the Year 2023 Winners

A special blog contribution from our 2023 FPWR Art Auction Participants! Our 2023 Artist of the Year competition was a great success, raising critical funds for PWS research! We extend our heartfelt gratitude to all our extraordinary artists who part...

Topics: Stories of Hope

'It’s a Beautiful Gift I Never Expected' Says SYS Hero and Mom

A special blog contribution from Roya Malaekeh. People often ask what it was like getting a diagnosis, especially since we had endured a year without one. When I got that phone call from the geneticist, it felt like a boulder was lifted off my chest ...

Topics: Stories of Hope

'She Gets Stronger Every Day' Says SYS Mom Inspired by Daughter

A special blog contribution from Stephanie McDade. Last week Gibson rode a tricycle. She pedaled and steered on her own for a good five minutes on the sidewalk of our city block. This is real progress for a 8-year-old who doesn’t walk independently a...

Topics: Stories of Hope

‘He Shows Me Everyday What a True Superhero Looks Like’ Says PWS Mom

A special contribution by guest blogger Heather Osterman. Max came into the world with a bang...or more accurately, a limp body, not breathing, and blue. I went from being induced, since Max was quite cozy where he was, to a long labor, to an emergen...

Topics: Stories of Hope

‘The Amount of Love and Light He’s Brought to Our Lives Is Immeasurable’

A special contribution by guest blogger Rebecca Noel On May 25th our beautiful son Bron arrived to our tears of joy. He was so tiny and precious, and needed time in the NICU. He seemed to be making wonderful progress and we were full of hope. We had ...

Topics: Stories of Hope

'She Is Tough, She Is a Fighter' Says PWS Mom Inspired by Daughter

A special blog contribution from Krysten Leighty. Krysten shared her story via our Stories of Hope Questionnaire.

Topics: Stories of Hope