FPWR is, and always has been, about BIG ideas. We came together years ago with BIG dreams, dreams that sprang from BIG love for our dear, dear children with BIG challenges. We have used the money we have been able to raise to fund a BIG list of projects in a few, short years. We have done everything we can to use BIG technology effectively, to get BIG brains together to come up with BIG ways to solve our children’s BIG problems, and to create an environment of BIG hopes based on realistic expectations. It’s all about the BIG.
Well, maybe not ALL….
When you look at FPWR as a whole, we are hundreds of families joined together into an organization whose common purpose is to fund PWS research at the highest level possible. When you take the time to look more closely, you see not just the whole, but the precious individuals who make up this body. You see the individuals whose lives have been clouded by the diagnosis of Prader-Willi syndrome. You see parents, siblings, families, and friends who suffer along with these individuals and want so desperately to help. You see networks of professionals in a wide array of fields who struggle to provide the level of care needed to improve the quality of life of everyone involved.
When you look closely at FPWR, you see that it is made up of relationships–lots and lots of relationships. Hearts and heads and hands are joined in a way that none of us would have ever dreamed necessary before coming into this world of PWS. Most of us did not volunteer for this life, but we are here, and it is these relationships that will get us through. It is too, too much to handle alone.
In a very real sense, strong individuals lead to strong families, and these strong families build a strong organization. How, then, do we, the families of FPWR, as wounded as we are, do anything to help each other that is BIG enough to matter? We are tired, we are worried, we are hurt, and we often feel very alone. With these limitations, what could we possibly do that would matter?
Leo Buscaglia said, “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around…”
While we are working hard to fund research in a BIG way, let’s not forget that the small things matter, too. Let’s strengthen FPWR by strengthening each other. Take a minute today and think about someone you know who needs a little extra help dealing with PWS today. Choose one of the small things above, or any way that you feel led, to help shore up that person or family. It well may be that your act of kindness will be just the ticket to “turn a life around.” And who knows but that on some tomorrow, when the weight of the struggle is more than you feel you can bear, someone will think of you, and do the same.