Saturday, December 12, 2009

We can make a difference if we make ourselves heard.


I came across a certain bill, one that may actually directly affect my life, and the life of my son. The bill is known as the Congenital Heart Futures Act. The bill addresses the issue of adults with CHD's and the shocking statistics that only 10% receive the life-long care that they need to have a longer, healthier quality of life. The bill supports research and education on congential heart diseases to promote the chances of the medical industry discovering new and better ways to help those born with CHD's later on their lives.

The bill hasn't received enough attention to be recognized as well as we need it to. But we can help our Senators understand the importance of this bill and perhaps help improve the lives of all those little boys and girls born with CHD's that spent months in hospitals undergoing surgeries to help them continue forward. We need them to know that even when they are grown they will still be cared for and taken care of.

If you want to voice your opinion there is an email template (found on this page under "action is simple") that you can fill in the blanks with your name, your personal relationship to this issue and where you are from. Then you send it to your local senators and house representatives and they will start to see how life-changing this bill is.

Email Bob Bennett: here
Email Orrin Hatch: here

The full text of the bill can be read here.

Thank you for reading.

~Mom of Jack, HLHS

4 comments:

Kyle and Alli said...

We did this and received some very nice responses from the offices of our Idaho senators and House reps. Truly a great bill that will have a huge impact on our kids futures!

Staci said...

I emailed both senators tonight and copied your post onto my blog. Thank you for getting this started. Let's get the word out.

Staci (angel Bridger's mom)

Andy's Mommy said...

Thanks for sharing this Lisa!

SteveC said...

Good Morning!

I was at Lobby Day earlier this year when we were lobbying Congress for the Congenital Heart Futures Act - there about 275 of us there, all CHDers, parents, and Cardiologists. We got the legislation introduced (in both houses of Congress!) In March but they have been stuck in committee ever since. My opinion as to why they are stuck is the Heathcare reform. Reform has so dominated Congress lately that everything else is taking a back seat. It's not just the Act, almost everything has been put on hold until healthcare passes or doesn't pass.

We are going back to DC to lobby for the Act again this April (April 22) to try to see if we can give it a shove forward. By then, the healthcare issue will be settled (one way or the other) and things should be moving in Congress again - perhaps slowly, like usual, but moving.

If you can, make plans to join us in DC and help out!

Steve
Adventures of a Funky Heart!
http://tricuspid.wordpress.com/