Lobby Day 2009 – from a distance


(Note: This page updated at 10:00 Eastern time, February 11, 2009, to add links and correct misspellings.)

10:17 AM Eastern – It has been a strange morning! After the prep session at the Capitol Hill Club, everyone left for their assigned Congressional visits. I stayed behind, because my hernia is acting up. I had given cards with my telephone number and asked people to call with results of their visits, and sat down to get ready to blog.

No Wi-Fi. Actually the computer said there was Wi-Fi, and even locked onto the signal. But that is it. So I have retreated back to the hotel, where the Wi-Fi is working, and I’ll blog from here. I’d rather be in the middle of the action, but everyone has my cell phone number, and when they call in, I’ll report. But I wanted to get out a quick report because I know the readers are wondering what’s going on.

10 :30 AM – Kim from The CHD Blog isn’t here, she had something to come up at the last moment. She told me that she was hoping things would break her way and she would be able to attend, but it seems that they didn’t. Really miss getting to meet her!

10 :35 AM – Nice interview with Molly Nichelson of the American College of Cardiology (ACC)!

10:50 AM – Call from Anne Gammon of Palmetto Hearts. She and her husband Bill visited South Carolina Representative Henry Brown‘s office and spoke with his Legislative Aide for 15 minutes. The aide was very kind and receptive, and stated that Representative Brown was willing to be a co-sponsor of the Congenital Heart Futures Act!

11:01 AM – Funky Stomach says “Feed me!” Snacks available downstairs. Back in a flash!

11:20AM – Congenital Heart Futures Act is being presented to Congress by the National Congenital Heart Coalition (NCHC), which is seven diverse Congenital Heart Defect support groups working together. The Act would recognize that Congenital Heart Defects (CHDs) are the #1 birth defect. It would also recognize it as a chronic disease, affecting patients throughout their lifetime. The Bill would instruct the National Heart, Lung, and Blood Institute (NHLBI) to allocate funds for research on the causes of CHD; long term outcomes in CHD patients; diagnosis, prevention, and treatment of CHD; and eliminating barriers to care for CHD patients. An actual law such as the Act would make funding mandatory, rather than having to return to Congress every year and lobby for another budget allocation.

11:25 AM – Word has come from the Capitol Hill Club that the Wi-Fi is up and running! I’m going to pack up and return to Lobby Day HQ, hopefully back online in 30 min or less (or the next update is FREE!)

12:10 PM – I guess this update is free! The Congenital Heart Futures Act will also get the Centers for Disease Control (CDC) involved in CHD issues. Once Congenital Heart Defects are identified as a chronic disease, the CDC
will begin to compile statistics about occurrences of CHD, survival rates, mortality, etc. They do not do that now (they have never been assigned this task).

12:23 PM – Lobbying Congress to get a bill started is a bit like going out on a date! You don’t just want anybody… a Representative on the Agriculture Committee isn’t going to have much pull on a health care bill. You want someone who has been in office long enough to have some seniority and is on a powerful committee! (health care or a money/budget committee)

12:38 PM – Lobby Day snack! Don’t worry, I’m scraping the salt off! 0210091233

12:51 PM – Yanked the memory card out of my phone too fast. Phone pouted for a while, but is working now. Hope I didn’t miss  anyone’s call!

1:09 PM – The Florida delegation visited Representative Adam Putnam. They met with his Legislative Aide; the Aide was very receptive. The Aide repeated Representative Putnam’s previous statement that “All health care issues are important, and it is challenging to prioritize one issue over another.” Our delegation was quick to point out that CHDs are the number one birth defect and currently has very little federal funding. The Aide assured our group that she would take this issue up with Putnam specifically.

1:21 PM – The Ohio lobbyists have called in! They visited Representative Charles Wilson. His Legislative Aide was very supportive and feels that Wilson would be interested in helping co-sponsor the bill!

1:30 PM – Rep. Mike Doyle of Pennsylvania was visited by our team. Doyle’s Legislative Aide said they had received telephone calls about the Congenital Heart Futures Act before, and it was being considered. Doyle could be a potential sponsor! If you have been calling Representative Doyle’s office, Thank You!

1:45 PM – Senator Mark Udall was going to meet with the Colorado group, but was not present. More than likely he has his hands full with the stimulus bill. This issue is so big that it could be a distraction for every other issue being presented to both houses of Congress, especially today.

1:58 PM – New Jersey reports that Representative Rush Holt himself spoke with the delegation. Holt is very enthused and could very well be a co-sponsor!

2:07 PM – Ohio strikes again! They visited Betty Sutton, who plans to introduce “Josh’s Heart Bill” later in the legislative session, which would put an Automatic External Defibrillator (AED) in every school in the nation.

2:41 PM – Several teams have returned to the Capitol Hill Club to rest and grab a bite to eat. Rhode Island reports that Senator Sheldon Whitehouse will co-sponsor the bill! Senator Jack Reed, also of Rhode Island, is willing to co-sponsor the Congenital Heart Futures Act but wants to see the exact language first. Representative Patrick Kennedy is non-committal. Representative Dianne DeGette of Colorado is interested and is a potential co-sponsor.

Charles Gonzalez of Texas is very interested. His staff requested more information and email addresses to stay in touch with our Texas Delegation.

2:50 PM: – Just heard that the stimulus package passed the Senate.

2:56 PM:  – Estimated cost per year of the Congenital Heart Futures Act is 12 million per year! Not bad! Medication time; let me find a water fountain.

3:07 PM – things are slowing down a little bit; several of the teams have returned and are filling out their “visit reports”. The reports are important so that the organization can follow up on any needs or requests for information. Several people are writing Thank You notes to the staffers in the offices the visited. Perhaps it seems old fashioned, but you want to keep your organization (and it’s causes) in the front of the legislator’s minds.

3: 38 PM – It’s Tennessee Tuesday! Senator Bob Corker and Senator Lamar Alexander hold “Tennessee Tuesday” when Congress is in session. It’s a Continental Breakfast for their constituents, who then can get a photograph taken and talk to staffers. Several of our lobbying team attended Tennessee Tuesday, got a chance to meet with their Senators AND get some breakfast. I’m jealous!

3:56 PM – Things are definitely starting to slow down… more and more people have come back to the Capitol Hill Club to do the paperwork. Some have finished their tasks and are leaving tonight. Safe travels, everyone! The major event of the last twenty minutes has been seeing former Senator Trent Lott downstairs!

4:50 PM: – Closing Comments: What has Lobby Day 2009 meant to you?

From a Survivor: “Hope”

Survivor: “The day that someone from the CDC gets on TV and talks about Congenital Heart Disease as much as they have spoken on Peanut Butter will be a great day.”

Survivor: “Lobby Day today has been a dream come true, we’ve seen actual progress being made.”

Organizer: “We worked together today as a coalition to get things done.”

Organizer “You guys are really amazing!”

The Funky Heart: “We rocked today!”

And with that….We’re outta here!

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17 Responses to “Lobby Day 2009 – from a distance”

  1. Anonymous Says:

    I’m glad that you are doing this. We appreciate the updates because even have a child with a chd, this is important for us too even though he has not reached adulthood yet.

  2. Molly Nichelson Says:

    Steve, it was great chatting with you. The Wi-Fi is up here, and people are coming back from their visits. If you want to live blog here, I can get you all hooked up.

    Thanks again for all that you do for congential heart patients like my sister! I do hope to keep in touch.

  3. Kim Says:

    Sounds like things are off to a good start. As you noticed, no, I didn’t make it. Sadie’s a pretty pathetic sight today. I just didn’t have the heart to leave her when she’s feeling so poorly.

    Looking at her little bluish nails this morning as she was coughing was an ardent and powerful reminder of why change must be made. I’m glad “the cause” has you as one if its champions!

    I missed meeting you too! Can’t wait to hear the full report!

  4. Kerri Pennington Says:

    How exciting…I sat reading each update biting my nails! (It is now 8:11 PM, so I missed the “real time” action…still exciting!) So glad that today went so well!

  5. Teri Martin Says:

    Thanks for posting all day!

  6. carolyn compton Says:

    wow! i’m from australia and i think this is an exciting day…but i am a little confused and don’t understand the whole lobby day thing. it sounds great to get polititians to listen up and know what the real issues are. well done steve blogging all day.

    i wonder if we have registers etc in aussie. we signed up to be part of the statistical data with our boy, clarence. we answered questions about diet etc during pregnancy and they also took dna at the time of his first procedure. the cardiac team has a research arm that does this with everyone who comes through their doors. i wonder when it started? it would be interesting to see if they have a national register of adults. seems like the way to fully understand CHD.

  7. Kelly Says:

    Steve, You did a great job. So glad we were able to meet, work hard and laugh. You were right, our metro adventure was certainly the quickest way back. Your dedication to all things CHD is so inspiring. Safe travels back.

  8. Sara Wallace Says:

    Thank you thank you for blogging the days events!!! How exciting to see this coming about for all of our “Heart” patients!! Thank you to everyone involved in seeing this through!


  9. Laurel Nelson Says:

    Oh I wish I could have been there. I was approached last month by Ellen (can’t remember her last name) from the Children’s Heart Foundation to see if I would be interested since 1 of Alaska’s Senator’s (Lisa Murkowski) was identified as a key person to reach and no one from Alaska had signed up to go. Unfortunately I am out of a job now, and without funds so I couldn’t be there. I was totally bummed too since I would have LOVED to have been there and make my voice heard on behalf of my own heart kid, and everyone else out there who is a survivor and who will be affected in the future. And BTW – I think that is stinky of that 1 Congressman to say that he couldn’t prioritize any health issues above another. What a bunch of BS when you’re talking about the #1 birth defect in the country. Shows how much more we have to go to raise awareness – he clearly had NONE.

  10. Laura Albovias Says:

    I feel so proud to be associated with such a cool guy who is part of health history in the making! What you are doing is amazing. Hope you are feeling all the prayers and positive energies I am sending your way.

  11. Christopher D Bryson Says:

    Good Job Comrade.You are so professional and eloquent it would be hard for anybody not to listen to you and take your cause seriously. I hope you are not overdoing it even though it sounds like you are having the time of your life. My prayers are with you and i’m so proud to have you as a friend.

  12. NEWSFLASH! « Adventures of a Funky Heart! Says:

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