I spent two days in Washington, D.C., last week. My friends and I were gathered there to lobby for funding for the Congenital Heart Futures Act, which became law when the President signed the Health Care Reform bill. Whether or not I am a fan of the Health Care bill is of no consequence here. What matters is that what we lobbied for last year is now a law. However, there are currently no funds appropriated for this act.

So, I went to Washington. It was an interesting experience, and I enjoyed the process of meeting with Legislative Directors and Health Care Aides, to discuss how their bosses---my senators and representative---feel about $7.25 million for a Congenital Heart Defect Surveillance System that will help doctors and researchers look at trends, compare cases, and ultimately, wipe out an enemy that affects 1 of every 100 children in this country. I found out that there are actually people in power, people whose paychecks are paid by US, who just really don't care about what matters to their constituents. They are more concerned with who's lining their pockets and paying for their box seats at the ball games. They don't support "disease-specific legislation," even though they once delivered babies, and, if you go by simple statistics, delivered about 40 with a Congenital Heart Defect. They don't want to take the time to visit with people from their own state, but will give a paid lobbyist their undivided attention. I wish I understood this thinking.

On the up-side of this story, we met with some really nice people who promised to talk to their bosses about our concerns, and see what they could do to help us out. I also met some really incredible people who were there to help us. There's Chad, who is 17 and has lived with CHD, and who came to D.C. by himself to help lobby for our cause. There was Dr. Vergosy, who came just to offer his support and his professional input. Then there were Christine and Sarah, who both lost babies last November. They put on a brave face, and showed strength that you could never imagine. I had the privilege of going with Sarah to talk to her representative from West Virginia. This rep was a woman who had just become a grandmother the week before. Sarah's story broke her heart, and gave her a face to remember when the time came to vote on appropriations. I hope she will think about Sarah and her little Jacob.

All in all, it was a productive trip. I am so glad I went! Now, I need a vacation....