Let’s meet in the Lobby….

Here’s a press release about a Congenital Heart Defect (CHD) study that I told you about a few weeks ago. The HEART-ACHD Study will analyze data in an attempt to learn why adult survivors of CHD’s tend to fall away from Cardiac Care. It is scheduled to last two years; hopefully we can learn why these survivors get lost and improve the entire Congenital Cardiac Care System.

Even though data is being gathered from adults, they aren’t the benefactor. Look over  the blogroll at all the Cardiac Kids that we’re linked to. They are the ones that this study is designed to help… we don’t want you to fall through the cracks when you grow up!

Yesterday in snowed here in South Carolina! As much as I hate the cold, I dug out the thermals and my gloves and went outside. I wondered how my dog would react to the snow, but she didn’t pay it a bit of attention. She ran and played, took a couple of Doggie Treats from my hand, and curled up on her sleeping mat. We got about three inches of snow total.

One of our loyal Funky Heart readers wants to hear about specific meetings with legislators while at Lobby Day. That’s our intention, we’re still trying to work out the best way to do it. We have a lot of ideas on the table, and hopefully we’ll figure out a good system that will allow me to get out and lobby and keep you informed at the same time!

I was also asked to explain the lobbying process. The origin of the word  comes from the place that the general public could speak with their legislators: since you couldn’t go into the legislative chambers (Non-legislators were barred from entry), the lobby was the best place to buttonhole your representative.

The Adult Congenital Heart Association (ACHA) has no professional lobbyists. Those of us who are able to travel to Washington, DC go to our Legislator’s office. Usually we will meet with the office’s Health Care expert. Make a good case to him or her, and they will pass your request on to the legislator.

Legislative meetings are iffy things. You can be scheduled for just a few moments or as much as fifteen minutes, so get right to the point. If you have ever read a newspaper article, you know how it is written: The most important information comes first.

Make it personal. How is this issue going to affect you? How will it affect the people in the district? What do you think should be done? Legislators love it when they get a chance to help people in their area, because if you are happy, you’ll tell your friends. The Legislator wants you happy, because that means you’ll probably vote for him!

If you have any written materials you can leave with the Health Care expert, do so. Having something tangible gives them something to refer back to later. Legislative staffers see a lot of people every day, you could be forgotten or confused with someone else. But they aren’t going to forget you, right? Because you are going to have such an effective presentation, the staffer will be swept off his or her feet!

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4 Responses to “Let’s meet in the Lobby….”

  1. Kelly Says:

    You’ve inspired me to go to Lobby Day! Just booked the flight, hotel and registered. My son is only 1, but this Momma is happy to join the efforts that benefit all cardic kids. If you need help twittering, emailing or updating while there…I’m happy to help. Thanks for all the inspiration.

  2. babyluke Says:

    If we are not able to attend Lobby day what else can we do to help? I thought maybe I could write letters and mail them to the legislators and encourage my friends and family to do the same. If so, any guidance on who to send them to would be appreciated.

  3. Writing a Lobby Day Letter « Adventures of a Funky Heart! Says:

    […] 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 […]

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