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

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. Rebecca shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Joey is truly the most exceptional human being that I know. He is kind; considerate...

May 4, 2022 Read More

Topics: Stories of Hope

Schaaf-Yang Syndrome Heroes Say, 'You Can Do Hard Things!'

A special contribution by guest blogger Leslie Born “No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins These words ring so true that some days I can’...

April 19, 2022 Read More

Topics: Stories of Hope, Schaaf-Yang Syndrome

Find What Brings You Hope

A special contribution by guest blogger Jeannine Kowal Share your story via our Stories of Hope Questionnaire. Caitlin's birth was uneventful. Caitlin's birth was induced at thirty‑nine and a half weeks because of growth concerns. Her Apgar score was...

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. Charlotte shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Let me count the ways … To doubt your own child is one of the worst feelings in...

December 31, 2021 Read More

Topics: Stories of Hope

Grandma 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 su...

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

Hoops to End Hunger - How One Family Turned March Madness into PWS Awareness

Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports. Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could not begin to explain how fearful we were for our sweet bo...

March 12, 2021 Read More

Topics: Stories of Hope

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

Categories

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

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

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

Schaaf-Yang Syndrome Heroes Say, 'You Can Do Hard Things!'

Find What Brings You Hope

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

Grandma Takes One SMALL Step for PWS Research

Dispelling the Myths Of Our Life With PWS

Hoops to End Hunger - How One Family Turned March Madness into PWS Awareness

About FPWR

Main Menu

Our Mission

Contact Us