I am encouraging everyone to support the Congenital Heart Futures Act. This bill defines congenital heart disease as a life-long disorder and calls for federal investment in congenital heart disease research and education and the creation of a national congenital heart disease registry. This bill is the first-ever legislation introduced to address the life-long needs of congenital heart patients. As the mother of a child born with complex congenital heart defects, I know how important this bill is to every family affected by congenital heart defects. In order to follow this bill, please go to www.thomas.loc.gov. In the Senate, it is referred to as S. 621; in the House, it is H.R. 1570.
While there is bi-partisan support in both houses of Congress, there is still a lot of work to be done. For those living in MD, Sen. Barbara Mikulski is considered a pivotal vote. Other Senators considered pivotal are: Sen. Hagan (NC), Sen. Bill Nelson (FL), Sen. Whitehouse (RI), Sen. Kohl (WI), Sen Milkulski (MD), Sen. Sanders (VT) and Sen. Schumer (NY). If you know anyone in any of these states, you may want to consider reaching out to them to contact their Senators to lobby them for their support.
As part of this effort, the National Congenital Heart Coalition (NCHC) has partnered with Guide Consulting to set up appointments with individual representatives and senators for those that are interested in lobbying. If you are interested in taking place in one of these meetings, you can email NCHCLobby@gmail.com and explain that you would like to lobby, and they will take care of setting up the appointments and will provide you fact and information sheets and any other information that you need.
Presentation from Virginia State Delegate David Bulova on the resolution proclaiming February 7-14 of every year as congenital heart defect awareness week.
Video link coming.
Link to Fairfax Connection Newspaper’s coverage of the presentation of the resolution.
http://www.connectionnewspapers.com/article.asp?article=328974&paper=63&cat=104