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Foundation for Prader-Willi Blog | Stories of Hope (3)

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‘She’s Changed Our Family Forever’: Claire Carucci’s Story of Hope

A special contribution by guest blogger Claire Carucci. Our 17-month-old daughter Caroline has Prader-Willi syndrome (PWS), and it has forced me to be stronger than I ever thought I would need to be. When I was looking at this little baby in the hosp...
September 20, 2022 Read More

Topics: Stories of Hope

'Change Invites Us to Reimagine, and That’s Such a Gift' Says PWS Hero

A special contribution by guest blogger Julie Foge Eliza turned eight this month, and it’s hard to put into words just how much our life has changed in that span of time. I knew it would the moment we got her diagnosis, of course, but it didn’t happe...
August 30, 2022 Read More

Topics: Stories of Hope

​​Why I’m Crossing the Globe for FPWR’s Annual Conference

A special contribution by guest blogger Will Greene When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to...
August 5, 2022 Read More

Topics: Stories of Hope, Parents

'It's a Decade of Declan!' Says PWS Hero and Mom

A special contribution by guest blogger Allison Shelton On the occasion of Declan’s tenth birthday this past April 14th, I wrote, “It’s a decade of Declan!” More completely, it has been a decade of our family living in the world of Prader-Willi syndr...
June 1, 2022 Read More

Topics: Stories of Hope

‘Most exceptional human being that I know’: Mom Inspired by Son with PWS

A special contribution by guest blogger Rebecca Krylow. From the start, Joey has had his own way of doing things — and his own timing, too. Every milestone he’s reached has come with a mix of patience, perseverance, and a whole lot of pride. We used ...
May 4, 2022 Read More

Topics: Stories of Hope

Find What Brings You Hope

A special contribution by guest blogger Jeannine Kowal Caitlin's birth was uneventful. She was induced at thirty‑nine and a half weeks because of growth concerns. Her Apgar score was 8/9, and we were discharged from the hospital two days later. We no...
February 22, 2022 Read More

Topics: Stories of Hope

Pushing Beyond Her Comfort Zone, PWS Mom Advocates for Child's Future

A special contribution by guest blogger Charlotte Kellar.
December 31, 2021 Read More

Topics: Stories of Hope

Diane Takes One SMALL Step for PWS Research

A special contribution by guest blogger Diane Schantin When Austin was born, our whole family was up at the hospital celebrating. I vividly remember the nurses coming in to check his vitals, watching their faces, and hearing, “Oh my God.” His blood s...
August 26, 2021 Read More

Topics: Stories of Hope

Dispelling the Myths Of Our Life With PWS

A special contribution by guest blogger Lisa Matesevac Our youngest child, Evan, was born in 2006. Little did I know what big changes were coming in our lives. I knew we would be outnumbered with three children. I knew we would have sleepless nights....
August 5, 2021 Read More

Topics: Stories of Hope

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Phone: 888-322-5487
Email: info@fpwr.org

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