Posts Tagged ‘Lobby’

Make it Easy!

April 21, 2010

Sung to the tune of Take it Easy, by The Eagles:

Well, I’m a standing on a corner in Washington, DC
Such a fine sight to see!
Hundreds of people showing up to lobby
Most of us with a CHD!
Come on Congress, don’t hold up progress;
We’re gonna find out today who is with us.
We can’t lose, but if we don’t win
we’ll keep coming back again and again.
So clear your schedule we’re coming in,
let’s make this easy!

C.H.D. in the USA!

April 18, 2010

Sung to the tune of R.O.C.K. in the USA by John Cougar Mellencamp

They come from the cities

And they come from the smaller towns

From all walks of life

With hearts that go

Crack! Boom! Bam!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Yeah, Yeah!

Fighting for the U.S.A.!

Said goodbye to their families

Said goodbye to their friends

With pipe dreams in their heads

And very little money in their hands

Some are black and some are white

Headin’ to DC to set things right

Solid as a rock with our eyes on the prize

‘Cause we’re gonna be…

Fighting CHD in the U.S.A!


Voices from nowhere

And voices from the larger towns

A head full of dreams

Gonna turn the world upside down

There were people with stenosis, pig valves, and Fallot

(They were fightin’!)

Bad aortas, switched vessels, ASDs,  Cardiomyopathy

(They were fightin’!)

Spotlight on the HLHS team

And don’t forget the Funky Heart!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting for the U.S.A!


What comes next

March 20, 2009

“The mark of a good team,” Green Bay Packers coach Vince Lombardi once said, “is the ability to win on the road.”

Well, Vince would be proud. Heart Defect survivors, parents, and Cardiologists must be a good team, because we played the ultimate road game. We went into the jungle known as Congress and with the introduction of the Congenital Heart Futures Act, we won.

Trouble is, the only thing we won was a trip to the playoffs. We’re playing in the Big Leagues now, gang. We were just a group of interested amateurs, working for an admirable cause. Now that we actually have legislation under consideration and a voice at the table, this time we’re for real.

So we need to step up.

Have you received an email from one of the Congenital Heart Defect Advocacy groups yet? Most of them have sent them out to their members and friends, but if you haven’t, here’s what you need to do:

Get the contact information for both of your Senators and your member of the House of Representatives. Get the information for both their Washington offices and their local offices.

Sit down and write each one of them a letter. Be polite and courteous, and be sure to say that you are asking them to co-sponsor the Congenital Heart Futures Act if possible, and to support it if/when it comes to a vote. You must use the bill number, the act is known as H.R. 1570 on the House side and S. 621 in the Senate. Tell them why the Act is important to you – personal stories work well. Are you a Heart Mom with a Cardiac Kid who always seems to be ill? An Adult Survivor? A Cardiologist? Give details, but be concise. Your letter should not be over one page long. Now, mail that letter!

Step Two: Sit down at your computer and compose a similar e-mail. Don’t copy your mailed letter word for word, but approach the issue from a different angle. For example, tell them how much your medication costs per month, and your hopes that the Act can eventually reduce the number of medication that you require. Again, use the bill numbers! Now type in the correct e-mail address and hit SEND.

Now, for your third task: Find out where that local office is. Is it nearby? Once a week, (and sometimes more often than that) one of the Legislator’s staffers will be in the office. Find out when he/she is there, make an appointment if you need to, and go to the office! This time, you’re expressing your support in person, so you have to be calm, cool and collected. Your best behavior is required, and use your indoor voice. In a famous TV ad, Shaft would threaten to “turn this place into a parking lot!” if he didn’t get what he wanted. But that won’t work here! (This city has enough parking spaces, the cop will say as they lead you away!)

And be prepared to repeat these actions at a later date, when the Act hits the floor for a vote or there is a chance it could be altered. Get yourself on the mailing list of one of the national CHD groups; they will let their members know when action is needed.

Congratulations! You have now done 80% more than the average concerned citizen! And with your dedication, the Congenital Heart Futures Act has a much better chance of passing.

If I had Heart Surgery, then I can deal with Congress!

August 22, 2008

If you live in the Washington, DC area (or can take a few days off and travel to DC), plan to Join the Adult Congenital Heart Association as we lobby Congress!

In 2007 we lobbied for the National Registry of CHD patients, and while we won the battle, we lost the war. The Registry initiative was included in the Federal Budget, but the political process delayed passage of the budget. When it finally was passed, the budget was “stripped” – in other words, many extra spending initiatives, including the registry, were dropped.

Lobby Day is scheduled for February 10, 2009, and if you can attend, we would love to have you. We especially need ACHDer’s who feel comfortable telling their story… even to someone you may see on the national news each night. And since appointments with Congressional staff almost always last 15 minutes or less, the quicker you can “cut to the point” the better! Congress is a strange beast: it can move painfully slow as a group, but individual meetings occur at a rapid pace.

If you do get to come, the following tips should come in handy:

Bring a good suit or dress, and gentlemen, don’t forget the tie. Business attire is standard dress for Congressional offices.

Bring a pair of good, comfortable shoes. You may be familiar with the size of the Capitol, but what you may not know is that all of the legislator’s offices are located in seven office buildings that surround the Capitol building. All of the buildings are connected by a system of tunnels, so while you won’t have to venture outside, there will be a lot of walking involved.

Don’t be disappointed if you don’t actually meet with your favorite legislator. A member of the staff familiar with the subject being discussed often takes the meeting and reports to his/her superior.

Getting to your hotel should be easy if you select a hotel near a Metro stop. Reagan National Airport has a Metro stop located a short walk from the baggage claim area.

When we lobby in 2009, we’ll be teamed up with other Congenital Heart Defect groups. Legislators and their staffers have come to expect visits from various heart related groups around Valentine’s Day: It’s a natural day to choose. When we lobbied in 2007, I met several people from other heart groups who were lobbying for their cause, too. It seems a bit “scattershot”, with five or six heart groups walking the halls, each one lobbying for their own cause. So in 2009 the ACHA is going to join forces with several other heart groups and lobby together. The more constituents you can put together the more Congress will respond, so joining together can only help each group.

So listen up Congress… We’re back!