Lobby Day 2010: Let’s win this…

“Let’s win this for everyone who never had a chance to get here.” – Hoosiers, 1986

(LIVE UPDATES – REFRESH THIS PAGE OFTEN!)

6:26 AM: Good Morning from Lobby Day 2010, from our home base here at the Phoenix Park Hotel! I have actually been here since 5:45, but unable to get online for some reason. Then suddenly, the internet connection worked and we are in business!

I plan to liveblog throughout the day, giving updates as events warrant. If you are getting this through Facebook or through an email subscription, it might be better for you actually head over to the Funky Heart website (https://tricuspid.wordpress.com) and follow us LIVE!

The quote above is from the movie Hoosiers, about a very small (64 Students) Indiana high school Basketball Team that makes it to the state finals. As the quote says, let’s win this for everyone who never had a chance to get here – The child in the ICU at Johns Hopkins who passed away the night I was admitted in 1967. Karen McNaulty, the driving force who formed the ACHA. and my friend Jim Wong, who was here for Lobby Day 2006, 2007, and 2009, but who passed away due to Cancer earlier this year. Jim, we’ll do our best to make you proud, my friend.

6:42 am: Pace is picking up, states are being assigned to tables in ball room. SC crew will share table with Iowa, Tennessee, and Oregon. I asked for SC to be put here because I FINALLY got an internet connection and it might be bad luck to move! (No, I’m not a bit superstitious! Not at all!)

I don’t know when my lobbying assignments will take place, so I might disappear for a stretch of time. And if the internet goes out again, I might be out of luck  but we’ll deal with problems as they occur!

6:55 AM: Time for breakfast!

7:20 AM: Training session is beginning! We’re reviewing the “ask” – an “ask” is just that – what we want our legislator to do. The Congenital Heart Futures Act is law, but only words on paper until money is allocated. So the thought for today is a familiar line from the movie Jerry McGwire: “SHOW ME THE MONEY!”

Our Ask is 7.25 million dollars. 3.75 million for the Congenital Heart Defect Surveillance System, 3.5 million for pediatric CHD research. (Surveillance system for Pediatrics already exists, but does not include CHDs.)

The National Institutes of Health (NIH) does not like for Congress to say “Spend XXXX on this type of research.” They are top notch scientific minds, everything is tested and evidence based. NIH would rather be allocated total amount of funds with recommendations on how/where to spend it. They’re very good at sorting through data and finding what needs a higher level of funding.

Taking a moment to remember the warrior who are no longer with us…. and to make this a celebration of them. In the words of Paul Cardall, “Let’s Celebrate Life!”

8:09 AM: Got my Schedule: John Spratt at 10 AM, Lindsey Graham at 2:30, Jim DeMint at 4. Liveblogging is going to be a bit of a challenge this afternoon, but we’ll work it out!

I’ll have to leave about 9 to get to my meeting, need to clear up a few things before then. May be a while before I update again.

8:31 AM: Here we go! Back in a while!

8::41 AM: Slight Delay, but all good. Almost ready to catch the shuttle to the Hill.

11:07 AM: Just back from a meeting in the offices Representative John Spratt (D-SC)! His staff are well informed and seem to be on board with CHD research funding! I think he is with us!

11:41 AM: It is quiet right now, as most of the lobby teams are out. I’ve filled out my Visit Report and written a thank you note to the young lady we spoke with. Lobbying isn’t just about walking in and saying what you want – that happens all day, every day. It’s too easy to get lost in the crowd. Lobbying is really about building relationships, and a thank you card goes a long way. After all – how many people send thank you cards there days? You gotta stay in the front of people’s minds!

1:01 PM: Off on another visit, on the Senate Side this time!

4:41 PM: Had a meeting with the staff of Senator Lindsey Graham. Excellent meeting! Mr. Colin Allen remembered me from two years ago wand was very receptive to our request! He understands where we are coming from, and why we need more survellence and research. I think we can count Senator Graham as a WIN!

I hung around in a Senate office building cafe rather than return to the hotel and then have to go back, and later had a good meeting with Senator Jim DeMint’s staffer. This young man just started – he doesn’t even have business cards yet. but he warmed to the subject and before long, he had a good understanding of what we were looking for. Of course, we left our Ask Sheet and in a few moments I’ll write the visit reports.

I was happy to have my Cardiologist, Dr. Mike McConnell, with me during the visit to DeMint’s office!

5;57 pm: I’m going to close the liveblogging now, it has been a great day, I think a lot of progress has been made! Tomorrow, ACHA is presenting the Vision 2020 forum – changing the way Adult Congenital Care is done. Read tomorrow for a look at the future of CHD care !