Liberty!

Proclaim LIBERTY throughout all the land unto all the Inhabitants thereofInscription on the Liberty Bell

I am at the offices of the Adult Congenital Heart Association (ACHA) helping out during our preparations for Lobby Day 2010. We’ll be here all day, and tomorrow take a passenger train to Washington, DC. Lobby Day is Thursday.

The ACHA offices are located on the third floor, and there are no elevators. Even though I walk every day and do an exercise that involves step walking as fast as possible, I almost couldn’t handle it. Last night during a short tour of the city we visited the Philadelphia Museum of Art. If you don’t recall, this museum is the location of the famous steps from the movie Rocky, and also the location of the Rocky Statue featured in the movie Rocky III.

I’m pretty healthy, in average shape, but with my Congenital Heart Defect (CHD) I couldn’t run the Rocky Steps.

It is appropriate that the ACHA offices are in Philadelphia – the city where freedom began. The city where both our Declaration of Independence and the United States Constitution were signed. Because we are planning the best way to obtain funding for the Congenital Heart Futures Act – something that could set future generations free from the scourge of CHDs.

This fight will not be over in a week. We’ve been fighting Heart Defects for years, and we were only able to add surgical corrections to our arsenal sixty six years ago. One operation which relieved one defect at first – that’s it. Everyone else was still out in the cold. But over time our knowledge grew, and we learned how to stay in the fight longer.

And maybe we’re heading for the day when we know enough to get this disease under control – if we can’t stop it completely, at least learn how to keep it at bay. Because the Congenital Heart Futures Act is our Declaration of Independence –  but just like the document signed here in Philadelphia, we have to work hard to make it mean anything.

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