In it to Win it

In case you haven’t heard, Katie passed away earlier today. Hypoplasic Left Heart Syndrome (HLHS) is one of the most difficult Congenital Heart Defects to overcome: The three surgery combination that can allow the heart to function wasn’t even developed until the 1980’s. Before that, HLHS was almost 100% fatal. And Katie is proof that we are still a long way from completely beating HLHS.

Hear this and hear it well: Adventures of a Funky Heart is declaring war on Congenital Heart Defects. There shouldn’t be any Heart Moms, Heart Dads, Cardiac Kids, or Heart Warriors. That’s why I’m going to Washington, DC, to lobby the United States Congress this coming February. As of last week, 78 have signed up to participate – a few more than participated in Lobby Day 2007. There is still time to register, CLICK HERE.

“Go west, Funky Heart!”, and that’s where I’m going, to participate in an Adult Congenital Heart Association (ACHA) event in May 2009. Details aren’t finalized yet, but I’m planning on letting you know all about it. I can tell you that it’s big, it’s bold, and Funky Heart and the ACHA are gonna be right smack dab in the middle of it!

It would be wonderful if you could travel to DC and work with us during Lobby Day. If you can’t, I plan to show you exactly how to lobby your Congressional Representative through e-mail, telephone, and fax. I’ll let you know more about May 2009 when everything is finalized, and perhaps you can join us there, too!

And if there is any other opportunity to get the word out about Congenital Heart Defects, those of us living with them, and the need to beat this illness, I’ll be involved. Will you?

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