The Congenital Heart Futures Act

It was great to meet with congressional staffers. It turns out that one of Senator Robert's staffers has a brother with a Congenital Heart Defect (CHD). So she was just as passionate about it as we were. Both staffers had said that this issue had never been brought to their attention before.
Our purpose for lobbying was to look for a co-sponsor or support for the Congenital Heart Futures Act. This act is 3 fold. First, there is a need for congenital heart specific research. It is the #1 birth defect in our country and there is currently NO research being done on this disease. Secondly, the bill is intended to promote awareness. Third, to increase surveillance with a national registry. This will hold patient and medical information. In the 1950s only 20% of babies born with CHD survived into adulthood. Now 90% of these babies live into adulthood. As you can see the congenital heart population is growing. The Congenital Heart Futures Act could be beneficial to this population and their families.
This was a successful trip because of the fact that we were able to bring about congenital heart defects awareness.

Thank you for your support.

Please click on the link below to see more pictures.

http://picasaweb.google.com/feekeymarie/CongenitalHeartLobbyingDay#5301989338506051762

Mission Accomplished

I am officially an experienced federal lobbyist. I had an empowering experience today. As some of you may or may not know I am a member of the Adult Congenital Heart Association (ACHD). This association is a part of the Congenital Heart Coalition (CHC), as are The Children Heart Foundation, Mended Little Hearts, It's My Heart, Adult congenital & Pediatric Cardiology and the Congenital Heart Information Network. It was reassuring to see all of us come together for one common interest...to support congenital heart disease.
I am still processing my lobbying experiences. My mission for the day was to inform Congressmen about a bill that will be introduced to the Senate. The Congenital Heart Futures Act is a bill that is in the process of being crafted by CHC and Senator Durbin. This act will 1) increase research 2) promote awareness. This bill will need their support.
Unfortunately, I was not able to personally speak with a congressmen. However I met with Senator Brownbacks' and Roberts' staffers.
I look forward to sharing more very soon.

We are in Washington D.C.

I want to start off by thanking all of you who made this possible. I am very happy to say that the $1000 goal was met. So thank you again.
Devin and I arrived to Washington D.C. We got lucky and got to got to a few memorials. Tomorrow we meet up for a dinner with all of the other CHD (congenital heart defects) people . I'm looking forward to sharing my scars and see others with them.
I will be posting a new blog soon.