Foundation for Prader-Willi Blog | 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 finally shouted from across the room. Twenty minutes later, our nurse handed Evan to me. “He’s ... I ... he,” I tried to find the words to tell her what she already knew — Evan was struggling for breath. I handed him back, she placed him in an isolette and quickly wheeled him to the NICU. 

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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-focused event — which also includes a 1K — to raise funds for PWS research.

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 capable and happy he is by the strength of that hug — and he offers it to everyone he meets. It's one of the things that has powered our fundraising for PWS research and brought our community together to secure a "hopefull" future for people with PWS. 

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

A special contribution by guest blogger Laura Achlabach

Laura shared her story via our Stories of Hope questionnaire.

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'My Life Was Enriched By Having a Sibling With PWS'

A special contribution by guest blogger Deb Cooper

Deb shared her story via our Stories of Hope questionnaire.

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Uncle Paul Cycles America to Build Awareness of PWS

Paul Golub’s 30th anniversary working for Walmart in Athens, GA, was just around the corner, when his upper management approached him and asked what he would like to do to celebrate the occasion. After spending some time thinking about it, he remembered something that his brother Larry had suggested about 5 years back — that they should ride their bikes coast to coast someday. 

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Camaraderie & Joy : Walking in Washington, DC

I recently had the joy of attending the One SMALL Step walk in Washington, D.C. on June 1, 2019. 

Being that I am involved daily in the One SMALL Step community, often helping in the background with technology, logistics, communications and coaching, one might think that by now I am used to the camaraderie, joy, feeling of acceptance and love that comes from attending a One SMALL Step event.  But with each One SMALL Step event that I attend or host, the feelings never fade or dull, they only grow stronger.

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Two Silver Medals: A Child's Achievement Inspires Strength and Hope

A special contribution by guest blogger Allison Shelton

Allison shared her story via our Stories of Hope questionnaire.

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My Son Can Do Anything He Sets His Mind To

A special contribution by guest blogger Marissa Marinan

Marissa shared her story via our Stories of Hope questionnaire.

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From the CEO's Desk: Together We Can Make Cutting-Edge PWS Research Possible

As my second month in my new role as FPWR's CEO concludes, I would like to reflect on some of my early observations and experiences with this truly incredible Prader-Willi community. 

During the short time I've been in this role, I've met or spoken with many volunteers and caregivers and now have begun to build an understanding of the enormous challenges you face on a daily basis and the incredible investment you're making in FPWR’s research to improve the lives of individuals with PWS.

Topics: Stories of Hope