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.