I think it is our realization of the sense of urgency in finding treatment/cure that sets us apart. Although it is important to contribute to an eventual answer, we are all parents of children who need help NOW! Our children do not have another chance to experience childhood and their adult years will be here well before we are ready.

I look at Erin and, as she keeps reminding me, she will soon be "double digits." In a way it seems like forever since PWS became a common word to us. But in another way, she could have been born yesterday. No matter how it seems, she is almost 10 and I am feeling the crunch to be sure that I am doing everything I can so she can lead the full life that she deserves. I have learned along the way that you have to visualize the future you want for your child and then put in place a process for that to happen. FPWR is very important in that process and we will do whatever we can to help fulfill the mission. That, in turn, will help the future we dream of come true more quickly.

What we do in FPWR takes work, but when we are working out of the love in our hearts for our children, it is worth every unit of energy it requires. Just look at what we have done, a relatively small group of hard-headed parents. We have raised $350,000, and this is just the beginning. 🙂 No matter how you look at things, the future looks brighter because we are here, all working together for the sake of our wonderful children, and every other child/family who is dealing with the challenges brought by PWS.

Keep up the good work, everybody! We have everything to gain, and nothing to lose but PWS.

Rachel

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