Home from The Foundation for Prader-Willi Research's Research Symposium and Family Conference. I finally got a moment to soak it all in and process everything.
I had a woman who just learned about PWS this weekend at the conference (I participated in an interview for medical delivery equipment), look at me and say, "after meeting your community I'm blown away. If my child had PWS I wouldn't be scared knowing I had this group of amazing parents and medical professionals behind me. You all truly are amazing."
And that's what I take away year after year from this conference. These people are our family, and the grit, determination, and willingness to do whatever it takes to find teatments and a cure for PWS is what rallys and ignites my soul. I love them something so fierce.
I couldn't help but look back to our first conference in Philly in 2012. Looking back provides perspective and truly shows the growth of this fastastic organization we're lucky to be part of.
I see the tenacity and joy in Ellie's eyes then, and 7 years later it's absolutely still there. It's a hard road we're on with Ellie and PWS...but FPWR has instilled a fight and hope in us that's indescribable.
I see Ellie 7 years ago fighting PWS...rocking her oxygen, and taking in the world around her. 7 years later, on this year's closing video, she's still fighting PWS...rocking her CPAP, and changing the course of her life and the lives of her friends by participating in a clincial trial for PWS.
5 years ago there were NO trials for the treatment of PWS. Today SIX drug trials are actively recruiting in different phases to treat different debilitating symptoms of PWS. And, there are MORE coming.
We took HOPE, turned it into ACTION and now we have POSSIBLITIES!
And everyone of us ISN'T giving up.
We will FIGHT til our last breath.
