Posts Tagged ‘NCHC’

The Plan

February 6, 2009

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!

Writing a Lobby Day Letter

February 2, 2009

I was asked to offer help to those who couldn’t make it to Lobby Day: specifically, would letter writing help, and if it would, what should the writer say?

Yes it would help, but there are a few guidelines you need to follow. First of all, write only your Representatives and Senators. While sending a letter to Nancy Pelosi may seem like “going straight to the top”, if you live in Iowa all you are doing is wasting your time. If you don’t live in the politician’s political district, your letter is almost instantly discarded. They just have too many constituents requesting their assistance to pay attention to a non-voter.

Also, call your Senator’s or Representative’s office, and ask if faxing a letter is acceptable. Ever since the Anthrax scare in 2001, mail sent to Congress is rerouted to a postal facility for any needed decontamination before being delivered. This slows down the mail to Congress considerably. While a written and mailed letter is considered more “important” (because someone actually took the time to write and mail it; therefore the writer must care deeply about the issue they address in the letter) a fax arrives much quicker. E-mail is generally frowned upon.

State who you are and where you are from as soon as possible. “Hello, my name is Al Smith and I reside at 1294 Main Street in Sunnyvale,” is a good opening sentence. It established the fact that you do live in the district and prevents your letter from being discarded.

Politicians like personal stories, so tell your story. Let him/her know about your child that was diagnosed with a Congenital Heart Defect. The same applies if your are a CHD Survivor. I won’t elaborate any further, since we all have our own unique tale to tell. You know what you want to say, so say it! If your are a member of a CHD support group local to the area (or a national organization, like the Adult Congenital Heart Association) try to mention them. That could help them out if they send lobbyists to the Congressional office.

Next, make your request. The National Congenital Heart Coalition (the umbrella group containing the ACHA and other national heart organizations) is lobbying for a National Registry of Congenital Heart Defect survivors.

Think about it, read the links, and decide what a Registry would mean to you. Yes, the registry is aimed at adult survivors – compiling information from adults gives us instant results, since most of their surgical procedures are (hopefully) behind them. And I’m not asking you to support something that you’ll never benefit from: Statistics from the Registry can be used to plan treatment for younger patients. After all, we’ve had these surgeries and taken these medications, and generating statistics will show what works and what doesn’t. If the information is available, why shouldn’t it be used to treat your Cardiac Kid?

Now comes the hard part – condensing all of this down to fit onto one typewritten page! Thankfully, it doesn’t have to be double spaced. ALWAYS be polite and respectful, and be sure to include contact information. Try to time your fax to arrive on or just before Lobby Day – February 10, 2009.