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  #1 (permalink)  
Old 06-06-2006, 07:17 AM
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Every once in a while I think about all the work it takes to raise money for Cystic Fibrosis and ask my self “Why do I work so hard for this”. Why form a corporation, deal with all the IRS headaches, spend countless hours asking for donations, and spend hundreds more building a raffle car and trying to sell tickets. Why? For what?

This morning, I decided to remind myself. Please read on because one out of every twenty eight, or less, of you reading this, carry Cystic Fibrosis. Who knows, maybe I do.

We all know that CF is the number one genetic killer of children and young adults in the US (and other countries) today, that it causes digestive and irreparable lung damage, diabetes, liver damage, kidney and lung failure, pneumonia, … But what I didn’t realize, is that you could be diagnosed with it at any time, any age, since it often ‘hides’ itself as appearing to be another type of decease.

“Happily ever after is something Kate and I never got to experience. We never got to experience the joys of raising children, or celebrating a 25th year anniversary, or simply just growing old together.” http://www.princesskatherine.net/ownwords.html

Progress is being made. But it is not easy an easy existence…

“In an odyssey that took her through every major hospital in New England, from Bangor's Maine Medical Center to Boston's Children's Hospital, year after year she made the rounds. No-one seems to know how many days Karen spent in hospitals. As the years rolled by, days in began to match days out, the time between hospitalizations becoming shorter and shorter. With operations buying time and constant medication a finger in the dike, her normal life became in, not out.” http://karensclimb.com/karen.htm

Karen died six days before Christmas… she was 25.

As I sat and read story after story about people that suffer from CF and those who have lost the battle, I couldn’t help but think how my wife and I would feel knowing that it was from us, our genes, from which the decease killing my child came. They even have a name for it, “carrier guilt”. I read page after page telling parents not to feel guilty… but I still can’t help but wonder how I would feel. There are counseling and support groups set up just to help the parents and the healthy siblings of people with CF. For those people, please take care of yourself, your child needs you.

As a child, my father worked for St. Jude Children’s Research Hospital. I saw first hand the tragedy of kids, some my own age, wither away and die. I know there is much tragedy in this world, Cystic Fibrosis is one of them.

I remind myself that 100% of the proceeds from the raffle car go to the CF foundation… and I remember why I do this.
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Old 06-06-2006, 07:53 AM
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Rick, what a powerful reminder, with just over two weeks to LCS, when everyone will get together with their good friends and great cars, to share another one of those life event times, its good to remind everyone about this devastating disease, and why the LCS has become so large and why we all work so hard to put it together.

I hope that all who have bought a ticket for the raffle car buy another, and for those who havent yet bought a ticket do so.

It shouldn't matter that most everyone already has a Cobra, that's not what it's about!
It's about donating for a great cause and to say " I joined in the Battle " and I had a great time with all my Cobra Friends while doing so!

See ya ll there!
Kumpie
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Old 06-06-2006, 08:32 AM
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Makes you aware of what "time you have" is all about.

Great post!!!!!
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Old 06-06-2006, 06:57 PM
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Well said Rick.
Work for the cure! Every ticket sends more money to CF!
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Old 06-07-2006, 12:11 PM
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Rick:
What I remind myself is that this could effect someone else's child and what that would do to their lives and in all the reminding I tell myself there is no difference between you and that "other" family. If it's important enough to them then by God it is important to me. I am very happy to see that the new cervical cancer treatment for women was engineered in my hometown. Be Patient Be Vigilent and don't blink.

If you need help with the IRS crap get in touch with me when I get there that is my backyard dude! Anything to help

J.A.
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Old 06-07-2006, 12:17 PM
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Thanks! The only IRS headache at the moment is we filed our 501(c)3 paperwork with them AGES ago and they still have not got back to us. They just say it has been "... assigned to an agent."
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