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
1 comment:
Hi..my name is Meredith Atkinson and I'm the mom of twins, one with CHD, who also participated in lobby day. I was the one in the red jacket helping do the role play at the breakfast. I just came across your blog and wanted to say thanks for coming to lobby day and having such enthusiasm. I'm a local DC person and have been involved for a while with lobby day and I sometimes wonder if it's worth it for all the people to fly in, but reading your blog has confirmed that, YES, it is worthwhile. I hope you're still inspired. I deeply appreciate people like you who, through your efforts, will improve the life of my daughter. Thanks again!
Post a Comment