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

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 how this all got started for our family. Like most families, we are VERY busy. At different times, we are EXTRA busy. ...

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

The Nelson Family: Paving the Way for Schaaf-Yang Research

In 2014, when Emma Nelson was born, NICU staff told her parents, Kim and Justin, to prepare for the worst. But for the next two years, Emma had no diagnosis. Kim and Justin were directed from one specialist to the next trying to find answers to their...

September 6, 2017 Read More

Topics: Stories of Hope, SYS

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

Your Child With PWS Can Have a Beautiful Life

A special contribution by guest blogger Loraine Hernandez Loraine shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? With the horrible scenario at the hospital when she was born, I really didn't hav...

July 7, 2017 Read More

Topics: Stories of Hope

For This Dad, PWS Means Exceeding Expectations

A special contribution by guest blogger Blake Brenneman Blake shared his story via our Stories of Hope questionnaire.

June 30, 2017 Read More

Topics: Stories of Hope

Mom's Message to PWS Parents: Pride and Love Will Fill Your Heart

A special contribution by guest blogger Laura Capone Laura shared her story via our Stories of Hope questionnaire. Has your child exceeded your expectations? A million times yes! We were given a very low expectation for Tommy's future, but he is a wa...

June 23, 2017 Read More

Topics: Stories of Hope

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

Categories

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

The Nelson Family: Paving the Way for Schaaf-Yang Research

Proud Brothers Cheer On Their Sister With PWS

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

Your Child With PWS Can Have a Beautiful Life

For This Dad, PWS Means Exceeding Expectations

Mom's Message to PWS Parents: Pride and Love Will Fill Your Heart

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