I don’t know what parts of the country this will resonate with, but where I live, here in the heart of the Bluegrass State, this is the summer of the cicadas. Every 17 years (or 13 for one species), these little creeps come out of the ground en masse and change outdoor life as we know it for a time. Anyone who lives with these creatures of ultimate annoyance cannot help but be aware when it is the year for cicadas.

(See http://www.ivyhall. district96. k12.il.us/ 4th/KKHP/ 1INSECTS/ cicada.html for more information. )

The very first thing you notice about cicadas is how LOUD they are. You cannot escape from this deafening, hovering sound, similar to what you would expect to hear if you were standing directly beneath ET’s mother-ship as it was landing. The second thing you notice is their infernal swarming. When you walk out the door, you have to make a mad dash for the car because they are out there, waiting and watching, for the next human to appear. They have no problem flying right into you and although they don’t bite, it’s quite unnerving to have these big, winged creatures heading right at you. As soon as you dodge one, here comes another one. I have taken to keeping a broom with me when we dart for the car. This serves two purposes. First, I can sweep up the carcasses of those who have gone on into their next life (and that can’t happen quickly enough for me!) and second, I can literally bat these little buzzards into next week as they make their approach.

Now, the obvious question is why in the world I am writing about this on the FPWR message board. Well, I’m glad you asked. I was thinking about the qualities that cicadas have that, although annoying, are unarguably effective in communicating to the world the idea of “cicada power.” They burst onto the scene, scream their message to the world, and once you have lived through this, your memory of cicadas never fades.

In a real way, this is what we are planning to do when we “Hike the Hill” in September. PWS families live our lives quietly, much as the cicadas do when they are underground, and nobody thinks much about us. We are all aware that we have a message and that we need those in charge to pay attention, but, for the most part, we go on with our lives, just trying to survive from day to day and hope that somebody somewhere will do something, that something will change . At least until now….

Come September, we have an opportunity to create a ruckus of cicadian proportion when we storm into DC with our message. If there were only two or three cicadas buzzing and darting around, they would be easily ignored, but because there are thousands, there is no chance of ignoring them. If only two or three of us take on the task of spreading the message of the urgent need for PWS research to those in power in DC, we can be easily ignored, but if we go in with such a number that the noise and commotion we make there is impossible to ignore, then we will get the results for which we hope.

I realize that my cicada story may not be something that all of you can relate to if you have never met a cicada personally. This, too, is a reminder of the challenge we face when we tell our stories to the senators and representatives on Capitol Hill. We live PWS 24/7 and we know what it means for our children and ourselves. They do not. Our job is to make PWS real for them, to tell our story in such a way that our children’s lives come to life for them. They need to SEE us. They need to HEAR us. If you need to encounter a cicada personally to understand one, how much more do you need to meet a PWS family, see our children, and hear our stories first-hand in order to understand WHY we need to have the maximum amount of funding for PWS research and have it NOW!

Let’s make so much noise, so much commotion, that no one can ever forget PWS and FPWR! When legislation containing funding proposals come up for a vote, let’s have made such a lasting impression that our children’s faces pop up in front of those in charge of the money and they can’t help but vote “YES” every time they see an appropriations bill for PWS research.

Friends, we have been quiet for far too long. Now is the time to emerge and Washington, D.C. is the place. Going straight to the seat of power with our message is not for a few, not just for the board members, not just for the locals. It is for every one of us! Let’s swarm the capitol, deliver our message in a powerful and never-to-be- forgotten way, and leave with the satisfaction of knowing that we have put PWS and FPWR on the radar of government leaders from coast to coast.

We can do this. We MUST do this! As I have said many times before, and will probably say many times again, EVERY DAY WITH PWS IS ONE DAY TOO MANY!!! Go to DC. Hike the hill. Tell your story. Lead the Way….Change Their Future!


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