The Plan

As of right now, the plans for Washington are set. They’re also flexible, so that I can liveblog the event for you and also get out and lobby, also. You may notice some changes as the day goes by and there could be long breaks when I’m not around my laptop, but we plan to do our best to keep you informed during Lobby Day.

To recap what is going on: On February 10, members of the National Congenital Heart Coalition will gather in Washington, DC to lobby members of Congress for a National Registry of Adult Congenital Heart Defect survivors. I’m going as a member of my CHD support group, the Adult Congenital Heart Association. (ACHA)

We’re aiming for a registry of adult survivors not only for the ACHA, but for everyone. Gathering data from adults means there is much more data available right away. We’ve had our surgeries and have taken the medications already. If the database were to rely on following children as they age, it could be 20 years or more before there is enough useful data. Gather that information from adults with a heart defect, and it’s ready to be used as soon as it is compiled.

I’ll be traveling to DC on February 9, and Lobby Day is February 10. We’ll gather in the Capitol Hill Club for a training session, and then we’ll board buses to the Capitol and lobby our legislators. I plan to work from the Capitol Hill Club as much as possible, interviewing attendees as they return from their lobbying sessions. I’ll post updates as they happen, so check Funky Heart throughout the day. We’ll be lobbying until 5:00 PM Eastern or later!

I plan to interview some of the Cardiologists who are there in depth, and talk to… well, anyone who will talk to me! Some things I’ll report as soon as they happen (“Jane Doe from Upside Down Hearts reports that Senator James Ironbottom pledged his support!”, for example) and some of the longer interviews, I’ll bring them home and transcribe the tape before they appear on Funky Heart. You’ll see them over the following days.

Kim from The CHD Blog will be there also, and hopefully she can take over for me when I have to be away.he may have plans to do some liveblogging also, I am not sure. Keep your eyes on The CHD Blog, too. If things get quiet for a while, just keep checking: I’ll be back! I’ll also be on Twitter for “snapshot updates.” If you want to read those you can follow me there, I’m funkyheart.

The exact schedule is still up in the air; I want to get out and lobby, and I also want to keep you informed. I’ll just have to keep an open mind and “roll with the flow!”

So pack your bags, the Funky Heart is off on another adventure, and you’re invited to come along!

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2 Responses to “The Plan”

  1. Kelly Says:

    Ask the cardiologists why so many of them still present to parents that the child is “cured” via surgery. The gross misrepresentation of the realities of CHD’s long term care is a recurring refrain among the parents I know.
    p.s. Coming to the Holiday Inn at 5…hope to meet you and Kim….or I’ll search the dinner for the guy with the bluish lips from the COLD! Can’t wait to meet all y’all!

  2. gry planszowe Says:

    very interesting site, i have bookmarked your blog for future referrence, thanks

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