Everything we do, we do it for you!

Remember that old Bryan Adams hit?

The Adult Congenital Heart Association (ACHA) will be sending a group to appear at next week’s Social Security Administration Policy Conference concerning “Cardiovascular Disorders in the Disability Programs.” The conference is going to be held in Baltimore, Maryland, and we’re on the schedule next Wednesday, September 24, 2008. The President of the ACHA will speak; so will one of the doctors on our Medical Advisory Board, someone from the Pediatric Cardiology Department of Johns Hopkins Hospital… and me. As a typical Congenital Heart Defect survivor, my role will be to explain what it is like to live with a heart defect.

And even though we are going to be approaching the issue from the perspective of the Adult Congenital patient, the session we’re participating in is titled “Cardiovascular Issues in Children and Congenital Heart Disease in Adults.” I’m very hopeful that some of the issues we bring forward will be incorporated into both the adult and children’s programs. For example, some of the current rules that determine disability status use measurements of the heart structure. For a normally developed heart that’s fine. But a CHD heart has underlying structural problems – the measurements won’t work for us.

I leave next Tuesday, flying out of Charlotte-Douglas Airport. I’m taking my laptop, but that doesn’t mean I’ll be able to post. If I miss a day or two, don’t worry: This Funky Heart is still having adventures!

Wish us luck!

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3 Responses to “Everything we do, we do it for you!”

  1. Christina Davis Says:

    I hope you post your talk! I think it is wonderful how much you are actively promoting CHD awareness. Have a fun and safe trip!

    Christina
    Jacob’s momma

  2. Lauren Says:

    Best of luck! Thanks for all you do 🙂

  3. Vanessa Says:

    That is awesome that you get to do and speak. You’ll have to fill us in when you get home. Thank you SO much for being a voice for so many children and adults!

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