Foundation for Prader-Willi Blog | Stories of Hope (6)

With PWS Research, There Is Renewed Hope for Peyton

On April 18th, 2012, our beautiful daughter, Peyton, was born. At 5lbs, 7oz, she was little, but everyone thought she was just weak and that she would get stronger as she grew. Peyton was not strong enough to nurse, and she struggled with a bottle. W...

October 20, 2020 Read More

Topics: Stories of Hope

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee Three little words changed our lives forever: Prader-Willi syndrome. Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research ...

August 11, 2020 Read More

Topics: Stories of Hope

Once She Sets Her Mind to Something, Nothing Can Stop Her!

A special contribution by guest blogger Alice Shapley Our beautiful and amazing daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the role of hard w...

May 14, 2020 Read More

Topics: Stories of Hope

Fundraising for PWS Research Has Empowered Our Family

A special contribution by guest blogger Felicia DiMuccio Growing up, I was never quite sure what I wanted to be, but I always knew I wanted to be a mom. Finding out I was pregnant with Siena was a dream come true, and I couldn't wait for her to enter...

April 8, 2020 Read More

Topics: Stories of Hope

PWS Research Provides the Hope We Desperately Needed As New Parents

A special contribution by guest blogger Natalie Brenneman Evan emerged into the world lifeless and blue. I remember watching my husband shifting back and forth on his tiptoes behind the medical team working to resuscitate him. “It’s a boy!” he finall...

February 18, 2020 Read More

Topics: Stories of Hope

Two Moms Harvest Hope With 5K for PWS Research

While most of us spend Thanksgiving Day, relaxing, watching football or entertaining family, Rachael Fischer and Julie Foge rise before the sun to host the Harvesting Hope 5K run. Since 2015 these two amazing, determined women have hosted this family...

November 12, 2019 Read More

Topics: Stories of Hope

Aaron Dunn and Family: Hugging Our Way to a 'Hopefull' Future

A special contribution by Amanda Dunn, Host of HopeFull: Funding a Cure for Prader-Willi Syndrome, Cincinnati, OH For our 5-year-old son Aaron, it all starts with a hug. Not just any hug. He has a signature, enthusiastic hug. It’s clear just how capa...

October 14, 2019 Read More

Topics: Stories of Hope

Our Challenges Are Opportunities To Be Better People, Says PWS Mom

A special contribution by guest blogger Laura Achlabach From the very beginning, Anthony has exceeded every expectation set for him. “He stopped using his g-tube before he was even four months old,” his mom shared proudly. “Now, he’s eating solids ju...

August 2, 2019 Read More

Topics: Stories of Hope