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Foundation for Prader-Willi Blog | Stories of Hope

'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.

Topics: Stories of Hope

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 remembe...

Topics: Stories of Hope

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,...

Topics: Stories of Hope

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.

Topics: Stories of Hope

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.

Topics: Stories of Hope

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 w...

Topics: Stories of Hope

PWS Mom's Courage Grows as the Story of Her Daughter Unfolds

A special contribution by One Small Step host Bailey Beasley “Something came back on the microarray.” We had just landed after being care flighted to a large children’s hospital. We had been in the NICU in our hometown for two weeks with undiagnosed ...

Topics: Stories of Hope

Dad Believes In an Amazing Life For His Son With PWS

A special contribution by Brian Kalasek My introduction to PWS probably started very similar to other PWS families. We were admitted to the NICU on day 3 of Paxton’s life. He hadn’t really “woken up” yet, but the nurses and doctors up to that point d...

Topics: Stories of Hope

Two Moms, 5 Years and $1.7M for PWS Research

Becky McWilliams and Samantha (Sam) Chipetz are a force to be reckoned with! In addition to managing successful careers and juggling a family, therapy appointments and play dates, these two hard working moms have been fundraising for PWS research for...

Topics: Stories of Hope

10 Lessons In Strength From a PWS Mom and Fundraiser

Larisa Martiniak, mother of two, hosted her first One Small Step walk this fall in Berkeley, California.  We asked her to share a bit of her perspective on what it’s like to find out her child has PWS, and how it has empowered her to take action in t...

Topics: Stories of Hope