Writing a Lobby Day Letter

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.


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