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

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

Singing, Dancing, Changing the World: Our Mighty Girl With PWS

A special contribution by Noelle Scalzo Our story started out as so many others do, with the dream of a "perfect" and "healthy" baby. We wanted to bring just one more tiny human into our world, a sibling for our now 4-year-old Danica to play with and...

September 22, 2017 Read More

Topics: Stories of Hope

Proud Brothers Cheer On Their Sister With PWS

A special contribution by Jessica Mitchell What did you feel when you first heard the words “Prader-Willi syndrome”? Did you feel sadness? Anger? Relief? If you were anything like me, you felt the “normal” slip right through your fingertips. You read...

September 1, 2017 Read More

Topics: Stories of Hope

'We Believe There Will Be Relief For Children With PWS': A Mom's Story

A special contribution by One SMALL Step host Samantha Kalasek Once upon a time, there was a "boy mom" blessed to be outnumbered. She believed she was living a very basic tale until she turned the page and realized it was actually a choose-your-own-a...

August 4, 2017 Read More

Topics: Stories of Hope

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

Categories

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

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

Dad Believes In an Amazing Life For His Son With PWS

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

10 Lessons In Strength From a PWS Mom and Fundraiser

Taking Charge and Changing the Futures of Our Children With PWS

Singing, Dancing, Changing the World: Our Mighty Girl With PWS

Proud Brothers Cheer On Their Sister With PWS

'We Believe There Will Be Relief For Children With PWS': A Mom's Story

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