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

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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, ...
June 12, 2019 Read More

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.
February 8, 2019 Read More

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.
March 23, 2018 Read More

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 wi...
March 16, 2018 Read More

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 an undiagnos...
February 23, 2018 Read More

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 was probably 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’...
February 16, 2018 Read More

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...
February 9, 2018 Read More

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 th...
December 8, 2017 Read More

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 about how this all got started for our family. Like most families, we are VERY busy. At different times, we are EXTRA ...
October 27, 2017 Read More

Topics: Stories of Hope

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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Covina, CA 91723

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