Posts Tagged ‘Lobby Day 2010’

Overheard at Lobby Day

April 27, 2010

This is a selection of phrases, sayings, quotes, and general conversations I overheard at the Lobby Day activities in Washington DC. “Lobby Day” is a bit of a misnomer, as events began Wednesday night and didn’t conclude until Saturday evening. (Since I wasn’t involved in the Saturday events I was not there.)

Sometimes I knew the person speaking, and sometimes I didn’t. But in either case, I have chosen to protect their privacy.

*

“I cut a photo of Jim Wong out of the newsletter and put it in my wallet. Where ever I go tomorrow, he’s going with me.”

*

“Did you ever think you’d be in a room full of people just like us?”

“No way. I didn’t even know anyone else with a heart defect until college.”

*

“The doctor told me `At my medical school, they taught us that people like you didn’t survive.’ I didn’t know what to say to that. A few moments later he asked `So, have you thought about the medical school you want to attend?’ I told him, `Not the one that you attended.'”

*

“One day people with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

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“Don’t worry, it’s all going to fall into place tomorrow. We’ve got a good message. And if it doesn’t work, I’ll kick somebody in the knee.”

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“Let’s win this for everyone who never had the chance to get here.”

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(To US Capitol Police Officer:) “I have a pacemaker, I’d like a hand search rather than walk through the metal detector.”

“There seems to be an unusual number of people with pacemakers coming through today.”

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Congressional Staffer: “Why aren’t there enough doctors trained to serve these adults with heart problems?”

Cardiologist: “Because twenty years ago, kids with heart defects usually didn’t live long enough to grow up.”

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Cardiologist: “I told the Senator `Adults living with Congenital Heart Disease are receiving third world level care, right here in America. This law is the first step in doing something to fix that.'”

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“Starting an Adult CHD Survellience System may sound strange, but it will help more in the end. We’ve already had the surgeries, taken the medications, and all that. If the people at CDC can gather data on us, analyze it, and figure out what works, and what doesn’t, it’ll save a lot of children from all the trial and error that we had to go through.”

*

“How far do you think you have walked today?”

“I don’t think my pedometer can count that high.”

*

“My feet are killing me. But I wouldn’t trade a moment of this for anything.”

Birth of a CHD Advocate

April 27, 2010

I’ve written about Amy Verstappen’s entry into the world of Congenital Heart Defect (CHD) Advocacy before, but her story is so powerful that you have to hear it firsthand for the full impact. Amy was kind enough to take a few moments on Lobby Day and tell her story once again.

Thank you!

April 25, 2010

Thank you for being a friend
Traveled down the road and back again
Your heart is true you’re a pal and a confidant

Thank You for Being a Friend, Andrew Gold (1978)

A very big THANK YOU to the people who helped make Lobby Day 2010 such a wonderful experience:

Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), and her husband Richard; my wonderful hosts and tour guides;

Anna, Fatima, and Nicole; all members of the ACHA Office Staff who welcomed me and put me to work;

Amy Basken; who works for several Congenital Heart Defect (CHD) organizations, serves as ACHA’s Advocacy Director, and coordinated most of our Lobby Day activities;

Molly Nicholson of the American College of Cardiology; for her work in helping this bill become a law and also for her friendship;

Paula Miller, a great friend and fellow heart warrior who accompanied me on two of my legislative visits;

Dr. Mike McConnell, my Cardiologist at Emory University in Atlanta, and my partner on my third legislative visit;

And especially to all 150+ CHDers and Advocates who brought their message to Capitol Hill!

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!)

Work Together

April 21, 2010

We must all hang together or most assuredly we shall hang separately. – Benjamin Franklin

There is a sheet included in the information packet for Lobby Day 2010 that reads:

I pledge to stay focused on Lobby Day 2010 key message points:

A) Increased federal funding for NIH Research in CHD

B Increased federal funding for health surveillance in CHD

This sheet must be signed and submitted before your registration for Lobby Day is complete. Why? To maintain unity of message. There will be a couple of hundred people walking around Capitol Hill, trying to obtain funding for the Congenital Heart Futures Act. And while we each may feel that funding for our area of interest is important, the surveillance system created by the act is the building block. With it, we can come back later and request funding and needs assessment for all of the different Congenital Heart Defect issues that we focus on: Adult Congenital Care, Fetal Echocardiograms, causes, racial disparities, PulseOx, and anything else. Without the Congenital Heart Futures Act, we ain’t got nuttin’. So think of it as the foundation for everything else to build on.

Knowing that, it is imperative that all of our lobbying teams stay on message. In a way, a lobbying group is like a choir. Imagine what would happen if every member just sang whatever they wanted to? The audience would be screaming – and then they’d get up and leave! And could you blame them?

This is why you are asked to give your word, and to signify such by signing your name.


Either we win together as a team, or we will die as individuals.
Any Given Sunday (1999)

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!

Hey!


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!

HEY!

We’re going hopping…down Philadelphia way!

April 15, 2010

Live from Studio B of WFIL-TV, located in the heart of Philadelphia, Pennsylvania, this is American Bandstand!”  – 3:30 PM August 5, 1957

The schedule is set! I’ll be in Philadelphia April 19-21, helping the Adult Congenital Heart Association (ACHA) prepare for Lobby Day 2010. I won’t be speaking while in Philadelphia – this will mainly be “behind the scenes” work, setting up the meetings between our attendees and the members of Congress. No liveblogging is scheduled either, but I am planning to post regularly.

Then on April 21 we’ll start the day in Philadelphia, but we’ll ride the train down to Union Station in Washington DC. And Lobby Day is set for Thursday, April 22.  Feel free to surf to Adventures of a Funky Heart! on April 22 and look over my shoulder, so to speak!

The recently passed healthcare bill (known as The Patient Protection and Affordable Care Act) contains some exciting provisions for those of us with Congenital Heart Defects (CHDs). The law creates a Congenital Heart Defect Surveillance System – the CHD Registry that ACHA campaigned for at Lobby Day 2007 – to be maintained by the Centers for Disease Control (CDC). It will also give the Director of the National Institutes of Health (NIH) the authority to “expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease…”

But there is a catch – the programs are authorized, but not funded. So we’ll be heading to Capitol Hill to convince our elected officials to supply the funds. So keep us in your thoughts – this will affect every Congenital Heart Defect (CHD) patient, not just adults. So call or write your Representative, and ask him or her to fund the Congenital Heart Disease provisions of The Patient Protection and Affordable Care Act! (That’s Section 10411, Section 399-V2, and Section 425, should you be asked. )

This will be my third Lobby Day; I attended Lobby Day 2007 and 2009. In 2007 my Cardiologist and I teamed up to visit 12 different Senators and Representatives, all from the Carolinas and Georgia. In 2009 my hernia was acting up so I stayed at our HQ and blogged the event, you can read that account HERE. The blogging was fun and got our message out to the entire world, but I felt a little bit “out of the loop” so I think I am going to try to blog and lobby this year. You may have a “Guest Blogger” for an hour or so while I lobby my Congressman, but I think I have a workable plan. And don’t worry – I’ll leave you in good hands! If I have to use a Guest Blogger I’ll get a Champ, not a chump!

I will also have a small video camera with me! I’m not going to promise anything – you know how electronic gremlins like to crash this type of event – but I hope to get several short interviews during this upcoming week!

The ACC… and Philadelphia!

March 14, 2010

No, not the Atlantic Coast Conference! (In that ACC’s Men’s Basketball Tournament, today’s championship game will feature Duke vs. Georgia Tech – a pretty good matchup!) I’m talking about ACC10, the American College of Cardiology’s annual scientific session being held in Atlanta, Georgia.  Atlanta’s not far away and I hoped to be able to actually attend it myself, but neither time nor money are on my side. But I have a couple of friends down there, and I’m keeping an eye on the Congenital Cardiology presentations. If there is anything that looks interesting I’ll pass it along. You can follow along yourself by searching for the #ACC10 hashtag on Twitter!

Also everything has fallen into place and I am off to Philadelphia in April! There aren’t any public appearances scheduled – I’m going the main office of the Adult Congenital Heart Association to help prepare for Lobby Day 2010; then take the train down to DC to actually be a part of Lobby Day myself!

My plan is to liveblog Lobby Day, just like I did last year. There is still time for you to be involved – click the Lobby Day 2010 link for information on registration and the host hotel!