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Foundation for Prader-Willi Blog | 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...

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...

Topics: Stories of Hope

Why I Will Always Celebrate the Beauty of My Son’s Rare Disease

The last day of February is Rare Disease Day. This special guest blog by Rebecca was originally published on Rare Disease Day in 2016, and we're republishing to share with you this year. If you're inspired by her story, please consider making a donat...

Topics: Stories of Hope

'The Growth Was Within Myself': A PWS Mom Counts Blessings

A special contribution by guest blogger Joni Augustine. Joni shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Branden was born 30 years ago, before there were so many wonderful resources. I was to...

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

— A special contribution by guest blogger Jacquelyn K. Jacquelyn shared her story via our Stories of Hope Questionnaire.

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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. We...

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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 ...

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

A special contribution by guest blogger Alice Shapley Our beautiful and amazing 7‑year‑old 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 rol...

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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...

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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...

Topics: Stories of Hope