Our oldest daughter was born with a ventricular septal heart defect. She weighed just over 3 pounds when she was born and is a part of the first generation of babies to survive congenital heart defects to adulthood. More research and follow-up of adults living with congenital heart disease (CHD) is needed.
Currently, there is a piece of legislation being presented, that our family asks you to support. This piece of legislation will allocate increased federal funding for the research in ADULT congenital heart disease through the National, Heart, Lung, and Blood Institute (NHLBI). It will also allow for funding to create a National Congenital Heart Disease (CHD) Registry that will allow researchers to follow infants born with heart defects who survive into adulthood-such as our daughter. There are several more areas in which this Act will allocate funds but these are the primary ones.
It is with immense excitement that I can say the Congenital Heart Futures Act was introduced on the Senate and House floors 2 weeks ago (bipartisan sides) on Capitol Hill by Senator Dick Durbin (D-IL). There is now Senate support and House support (both Democratic and Republican) for this Bill. It was given a bill number today and is moving forward very rapidly! For it is THIS bill that will provide the funding and research on treatments that will, more than likely, directly affect the life of our daughter and so many others…her future and many others who live with the complications of heart defects.
We have 20 states co-sponsoring this bill but would still like to see the other 30 states as a Co-Sponsor. If those of you who live in a different state from myself would like to email your Senators or Representatives requesting Co-Sponsorship of this bill-let me know. For the Congenital Heart Futures Act to become a LAW it MUST have majority support in House and Senate.
Below is the link on further information regarding the CHFA and the introduction of this Bill.
http://durbin.senate.gov/showRelease.cfm?releaseId=309944
Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it:
1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses
2) Draft your email - Here is a template to get you started.
3) Make your letter personal to you. The attached template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.
4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.
That's all there is to it!
If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.
THANK YOU!
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