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Foundation for Prader-Willi Blog | Stories of Hope (5)

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‘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

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

Your Child Will Be Your Hero

A special contribution by guest blogger Lindsey Larson Elliot earned the nickname “hero” before he was even born. I was 20 weeks along with our triplets, and I had noticed our only boy (Elliot) hadn’t moved in quite some time. Concerned, I called my ...
March 2, 2021 Read More

Topics: Stories of Hope

Seeing What Can Be: Branden’s Story

A special contribution by guest blogger Joni Augustine. When Branden was born 30 years ago, there weren’t nearly as many resources or support networks for families affected by Prader-Willi syndrome (PWS). Doctors told me he would never walk and that ...
November 16, 2020 Read More

Topics: Stories of Hope

I’ve Spent My Life Preparing For This: PWS Mom Shares Sources of Strength

Jacquelyn first shared her experience through our Stories of Hope questionnaire. What emerged was a powerful portrait of resilience—hers, and her daughter’s.
October 26, 2020 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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