Posts Tagged ‘Senate’

Capitol Tour!

April 23, 2010

Due to security, you can’t park in the Capitol Complex unless you have a pass. To get a pass, you need to be a staff member or an elected official.

If you want to visit one of the legislative office buildings, you can take a golf cart from the public area to a location close to your destination. Here’s a quick video of the ride past the U. S. Capitol. (The quality is pretty bad, but remember I was bouncing along in a golf cart!)

CHD History made at 7:00 AM Eastern?

December 23, 2009

The United States Senate plans to vote on their version of the healthcare bill at 7:00 AM Christmas Eve. Included in the Manger’s Amendment for the bill is a version of the Congenital Heart Futures Act, introduced back in March after a lot of hard work by CHDers from across the country.

But a lot still has to be done. Even though both houses of Congress have healthcare bills, the two bills do not agree (Assuming the Senate bill passes tomorrow; it should). The bills will have to be “reconciled” – a committee of both Senators and Representatives will meet and decide which parts of both bills are acceptable and then combine the two. Since there is no Congenital Heart Futures Act in the House version, it could be cut out. When all is said and done, we may have to go all the way back to the beginning.

But no matter what happens with the bill, we still have the IMPACT Registry. IMPACT stands for Improving Pediatric and Adult Congenital Treatment and Funky Heart! readers have read about it here before. An initiative of the American College of Cardiology Foundation, IMPACT is not reliant on Congressional approval and is still scheduled to begin in 2010.

DC Bound!

December 5, 2009

“I’ll be back.” – The Terminator (1984)

I thought that we had already fought this battle – CHDers have been to Washington DC to lobby for the Congenital Heart Futures Act earlier this year, 250 of us. And in early March our efforts were rewarded by introduction of the Act into BOTH the Senate and the House on March 18, 2009. The Act was given an identifing number for both versions (The Senate version is known as S. 621 and the House bill is marked H.R. 1570.) We’ve even got some good sponsorship, the most prominent being Senator Richard Durbin, the Democrat from Illinois.

So I thought we had fought this battle.

“Just when I thought I was out, they pull me back in!” – The Godfather Part III (1990)

Looks like I was wrong – the Congenital Heart Futures Act is stuck in Committee. It has happened to a lot of bills; National Healthcare Reform has dominated this session of Congress and it seems that everything else has to wait its turn.

So we’re going back to DC, to lobby for the Congenital Heart Futures Act again. And hopefully this time we can get it moving. Lobby Day 2010 is set for April 22, and I’m hopeful that you will make plans to join us in DC.

We need every voice to speak out – not only for the current generation of Congenital Heart Defect Survivors, but for the generations yet to come. And if you can’t come yourself, please consider writing a letter of support for the Act. Every little bit helps!

The Funky Heart plans to be there, once again liveblogging the event and keeping you informed of what’s going on. You can’t just say that you are working against CHDs, you have to get in the fight, put your feet on the ground and be willing to do the grunt work.

We’ll be right there in the middle of it!

“I’m on my way!” – Dick Tracy (1990)


September 30, 2009

Yep – the Congenital Heart Futures Act is getting steamrolled, and there isn’t a heck of a lot we can do about it.

Health Care Reform is pretty much THE topic of discussion in the halls of Congress these days. Nothing else matters, everything else is off the table until the Health Care issue is settled. I don’t know enough about Congressional procedure to know if a bill “expires”, so I don’t know if we’ll have to trek back to Washington and lobby for it again. My contact person who would know these things is on vacation; she deserves a break, her organization just finished a major meeting and lobbying effort of their own. Like the McDonald’s advertisment, she deserves a break today!

But if it turns out that we have to get in there and do it again, count me in! And I’ll take my laptop with me and bring Funky Heart readers along for the ride. And hopefully we’ll answer the question, How many funky hearts does it take to move Congress?

But what I am worried about is the aftermath of the Health Care Reform debate. Battle lines are being drawn and it looks like both sides are getting ready for a fight. I’m concerned that after the reform effort the atmosphere¬† is going to be so toxic, that nothing even remotely connected to health care will seriously be considered. And that could leave us out in the cold – for quite a while. And we don’t need that to happen.

But that’s why mechanics explore junkyards – sometimes a part borrowed from that wrecked clunker is exactly what you need to rebuild that dream car and make it run. Our surgeons cut us open, looked at our defective hearts, and figured out a way to made them work correctly. It ain’t perfect, and some of us seem to be held together with “baling wire and¬† bubble gum” – but we’re still going!

We’ve been down this road before, and if we have to, we’ll piece something together and make it work!

Resources for tracking the Congenital Heart Futures Act

March 21, 2009

House Version of Congenital Heart Futures Act on

House Version on Politics4All.

Senate Version of Congenital Heart Futures Act on

Senate Version on Politics4All.

While OpenCongress and Politics4All each have advantages and disadvantages, Politics4All seems to be slightly better. It was on Politics4All that I learned that the House version of the bill has picked up two additional co-sponsors: Betty Sutton and Charles A. Wilson, both Democrats from Ohio. THREE Ohio Representatives are now openly supporting the Congenital Heart Futures Act!

In it to Win it

November 9, 2008

In case you haven’t heard, Katie passed away earlier today. Hypoplasic Left Heart Syndrome (HLHS) is one of the most difficult Congenital Heart Defects to overcome: The three surgery combination that can allow the heart to function wasn’t even developed until the 1980’s. Before that, HLHS was almost 100% fatal. And Katie is proof that we are still a long way from completely beating HLHS.

Hear this and hear it well: Adventures of a Funky Heart is declaring war on Congenital Heart Defects. There shouldn’t be any Heart Moms, Heart Dads, Cardiac Kids, or Heart Warriors. That’s why I’m going to Washington, DC, to lobby the United States Congress this coming February. As of last week, 78 have signed up to participate – a few more than participated in Lobby Day 2007. There is still time to register, CLICK HERE.

“Go west, Funky Heart!”, and that’s where I’m going, to participate in an Adult Congenital Heart Association (ACHA) event in May 2009. Details aren’t finalized yet, but I’m planning on letting you know all about it. I can tell you that it’s big, it’s bold, and Funky Heart and the ACHA are gonna be right smack dab in the middle of it!

It would be wonderful if you could travel to DC and work with us during Lobby Day. If you can’t, I plan to show you exactly how to lobby your Congressional Representative through e-mail, telephone, and fax. I’ll let you know more about May 2009 when everything is finalized, and perhaps you can join us there, too!

And if there is any other opportunity to get the word out about Congenital Heart Defects, those of us living with them, and the need to beat this illness, I’ll be involved. Will you?