More and more friends!

Funky Heart has another friend! Meet Jillian!

There’s getting to be a lot of us here, and I would be remiss if I didn’t mention Lobby Day to our newcomers. I’ve already signed up, and I have my hotel reservation. There’s still time to sign up if you want to attend!

Lobby Day is sponsored by my CHD support group, the Adult Congenital Heart Association (ACHA). A lot of other CHD support groups are involved, and you do not have to be an ACHA member to participate. We’re lobbying for a National Congenital Heart Defect Registry – if we can create a database of as many CHD survivors as possible, we can study the resulting statistics and determine what treatments work, which ones don’t, and perhaps come up with better treatments. And maybe reduce some medication needs.

I understand that not everyone can just put their lives on hold long enough to travel to Washington. So as Lobby Day gets closer, I plan to show you how you can help support Congenital Heart Defect research from the comfort of your own home.

One thing you can do to help yourself (or your child) is to read the Bethesda 32 report. What is the Bethesda 32 Report? Every year, the American College of Cardiology meets in Betheda, Maryland. At their 32nd annual meeting (which is where the term “Bethesda 32” comes from), they presented a paper entitled “Care of the Adult with Congenital Heart Disease”.

As the title implies, the report is geared toward adults. But there are important points that apply to all people with Congenital Heart Defects. All thirty five defects are divided in to categories, with moderate and severe defects needing more advanced health care options.

Bethesda 32 is almost required reading for anyone associated with a CHD, either as a survivor or as the parent of a cardiac kid. You can read the highlights at the ACHA webpage, or download a two page .pdf  fact sheet here.  Read the entire report online at the American College of Cardiology’s website, or print out the entire report here. (Be prepared, it’s 38 printed pages!)


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