Nicole Stone

Valentine’s Day is often a time of expressing our affection for those in our lives who are dear to us   For Pat and Cheryl Stone, however, what they received on Valentine’s Day of 2001 touched their hearts in a very different way.  That day, instead of hearts and flowers, the Stones received a diagnosis of Prader-Willi syndrome for their precious daughter, Nicole. 

“It was the mind-numbering revelation that bonds us all,” says Pat.  â€œThis is not an experience that can really be described.” 

Everyone whose child has been given this diagnosis knows exactly what he means.  There are no words to describe the pain, the fear, and the sense of hopelessness that those words bring.  In spite of this, the Stones soon regrouped and sensed that not only did they have a challenge, but they had a “call to action.”  That’s when they joined FPWR.

“The best remedy for us was to become educated and work to change the outcome,” said Pat.  Up until an event like this happens, we measure quality of achievement.  Afterwards, you learn to measure quality of spirit.  This is the lesson that Nicole came to teach us.  It’s not what you can do, it’s who you are.” 

For the Stones, the mission of FPWR was consistent with their approach to PWS.  â€œFPWR follows what we felt was the most direct path that science has to offer for Nicole,” stated Cheryl.  â€œWe weren’t a family in need of social support per se.  We were a family in need of a treatments and a cure!  With FPWR, there was no pussyfooting around.  This was a direct line to a cure and that just felt right.”

In spite of PWS, the Stones view the future with hope.  As they continue to work day to day on Nicole’s behalf, they are encouraged by all the amazing science and the promise it holds to help Nicole and everyone else with PWS. 

The enthusiasm that Pat and Cheryl have for FPWR has spread among their family.  Cheryl’s mother, Nelda Ostgard, has generously given $60,000 over the years to support PWS research in honor of Nicole.  This is a family who knows how to put their thoughts into action!

Valentine’s Day 2001 wasn’t what the Stones had ever expected, but their love for Nicole grew stronger than ever on that day and their commitment to her future and FPWR is clear.  â€œFPWR is extraordinary.  We’re so pleased with how well the work of FPWR is going,” said Cheryl. 

Those of us in FPWR will continue to work hard and work smart so that Nicole Stone, and everyone else affected by PWS, will have the healthy and happy lives they deserve.  Thanks to families like the Stones, we are confident of our ability to do just that.  We have taken the lead.  We WILL change the future!