Thursday, February 12, 2009

Carrying the fight to the enemy

175+ people affected by Congenital Heart Defects (CHDs) attended Lobby Day 2009 in Washington, DC! The attendees were CHD Survivors, their family members, and their cardiologists. Brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care.

After a briefing/training session, attendees were split into groups by geographic location and sent to meet with their Senator or Representative. Steve didn't lobby, but stayed in contact with the groups via telephone and Twitter and blogged the event. His contacts reported fourteen congressional visits, with a high majority of them receiving a positive or very positive reaction. And obviously, those were only a fraction of the total number of visits.

Steve had personally been worried that the vote on the Stimulus bill that was occurring in the Senate would be a "distraction" from our promoting the Congenital Heart Futures Act. It may have been; we will never know. But Lobby Day had been scheduled many months in advance and just happened to fall on the same day as the vote; the only thing that could be done was to work around it.

Although from different groups with varying levels of lobbying experience, our lobbyists meshed quickly and worked together as a team. After all, we have a common enemy: Congenital Heart Defects are the #1 birth defect. A new CHD is detected (diagnosed either at birth or later in life) every 14 minutes! So in the ten hours of Lobby Day 2009, there were 42 NEW cases of a Congenital Heart Defect reported.

The Congenital Heart Futures Act will ensure that their life experience with CHD will be vastly different than ours. That's why this fight is so important.


Mom 2 Andre said...

Hello Steve,

Thanks for sharing this post. I've been wondering what actually happened on Lobby Day. I also felt that timing may not have been right because the stimulus package distraction, but we have to start some time, right? I've only just started on talking about my personal journey because I just couldn't face 2008 all over again. Deep in my heart, I wanted to be a voice for our little one with CHD and the CHD community. When I decided to write our heart story as part of the lobby day efforts for our local heart organization chapter, it was when I decided I wasn't going to stop; this was the time for me to be another voice for CHD. It felt like my decision for my participation couldn't be more timely.

In the short amount of time, I've noticed that people talk a lot about heart problems to include CHD. I believe that there should be a clear distinction - heart disease and heart defects at birth. Do you agree?

Thank you again for your post.

From My Heart To Yours,
Mom 2 Andre, our CHD Survivor

Jenna said...

Where can I read Steve's blog of the event?