Tuesday, March 24, 2009

Egregious??? I'll show you egregious!

Last week, I heard some FABULOUS news! The Congenital Heart Futures Act was introduced in both houses of Congress. For those who don't know, this Act seeks to recognize that Congenital Heart Defects are the most common birth defect, promote awareness, create a registry of defects to aid doctors and patients, and a whole host of other people find out more about the defects, and best practices. It also seeks extra funding for research from the National Institutes of Health and the CDC. Worthy worthy goals I'd say, especially for something that is responsible for more deaths than all forms of childhood cancer combined, and roughly 1 out of every 100 babies being born with one - 40,000 per year. Thanks to better treatments, more and more kids are surviving to adulthood. Surviving but not necessarily thriving - check out this blog to see a personal story of why they're not necessarily thriving.
Anyway, I got a shocking wakeup call tonight when I saw this post on a heart blog I read. Here's the link - http://libertymaven.com/2009/03/20/how-is-congress-spending-its-time-%E2%80%94-and-your-money-part-11/4855/
I didn't comment on it, but I gotta say THE SHAME!!!! HOW DARE YOU CALL THIS EGREGIOUS!!!! As a mom - this got my hackles up, especially as a heart mom, and how personal this issue is to me. I WANT people to know more about heart defects! It shocks me that no one knows about it! We don't have a Michael J. Fox, a Susan G. Komen foundation, or any number of other celebrities throwing their weight behind this. My husband thinks I'm ridiculous, but I find myself sometimes hoping that other people will find themselves in the position that I have been in because then there will be 1 more family that knows about this! Of course I don't really, but hopefully you understand my point and how I just want other people to know what this is like and how desperately we need more awareness, and more funding for research. I have never seen a Public Service Announcement on TV about it, there is not a Heart Defects Awareness Day or Week on a National Level that is really recognized everywhere (Yes I know there is a Heart Defects Awareness Week and Day on Valentine's Day, but at this point it's not really taken root and it's kind of grass roots still).
Anyway, to anyone that reads this - please please please let your Representative and Senator know that you support the Congenital Heart Futures Act, and they should too.
1 person's pork spending is another's life and death struggle apparently, and hopefully there are enough of us who care that this thing can pass - if not this session then next!