Foundation for Prader-Willi Blog | 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, 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.

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 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

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 low tone and poor feeding. Now, our Catherine was fighting for her life against bacterial spinal meningitis and the neonatologist was telling me that if she survived there was worse news. The next morning we receive a preliminary diagnosis: Prader-Willi Syndrome. The doctor listed all of the problems our precious baby would face and when she explained the hunger I lost it. It sounded like a life sentence of misery. Would my baby ever be happy?
 

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 didn’t seem too concerned. They kept telling us he had WWBS, Wimpy White Boy Syndrome. Funny I thought, I’ve been fighting that for the past 36 years myself with limited success. By the end of the day 3 though everything had changed, we went from what we thought was a healthy little boy in the morning to total despair by dinner time.

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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 more than 5 years! Dedicated to finding treatments for the challenges that their sons, Brandon and Kieran, face on a daily basis, Sam and Becky have hosted walks, galas and other fundraising activities which have collectively raised over $1.7 million! 

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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 the day to day.

Topics: Stories of Hope

Two Moms Harvest Hope With 5K for PWS Research

While most of us will be relaxing on Thanksgiving Day, watching football or entertaining family, Rachael Fischer and Julie Foge will rise before the sun to host the Harvesting Hope 5K run. 

This will be the third year in a row that these two amazing, determined women will host this family-focused event — which also includes a 1K — to raise funds for PWS research.

Topics: Stories of Hope

Taking Charge and Changing the Futures of Our Children With PWS

A special contribution by One Small Step host Lisa Matesevac 

As we embark on hosting our 5th One SMALL Step event, I stop and think how this all got started for our family. Like most families, we are VERY busy. At different times, we are EXTRA busy.

When our son, Evan, was born in 2006 my husband and I had different perspectives on how to manage his future. Being in the medical field, I was certain with enough research I could find the best specialists, devour mountains of research and make a plan of care to ensure his best outcomes. My husband, Michael, was determined to make his quality of life the biggest priority. Laughing, playing, and enjoying family activities was his center of focus. Together we knew we had to be impactful on the PWS community as a whole. We both passionately believed research was the future and we cultivated hope from our visits to specialists and by surrounding ourselves with a local community of families like ours.

Topics: Stories of Hope

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