Congenital Heart Future Act

To all my friends,
Please help us to distribute this letter to help those kids born with heart defect. Your help is very much appreciated! Thanks a lot!

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Dear Members and Friends of Mended Little Hearts,

I am very excited to inform you that The Congenital Heart Futures Act was introduced in the Senate and House of Representatives on Tuesday March 17th! This bill calls for increased funding for research, a national registry, and funding for a national awareness and public education campaign.

Mended Little Hearts, along with our partners in the National Congenital Heart Coalition, need your help to get this important piece of legislation passed! Please take a moment to read the information below and find out how you can help and send an email to your representatives today!

Please feel free to pass this email along to your friends and family to ask for their support, and to post the information on your Facebook, MySpace, Caringbridge and Carepage pages!

In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi . In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida . We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944

So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. 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. - Please see the attached 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.

What amazing progress!

Amy Basken

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National Advocacy Chairperson

Mended Little Hearts

www.mendedlittlehearts.org




Sample Email:

Dear [Lawmaker name here]



I am writing as a member of the Mended Little Hearts to ask for your help in making a brighter future for all those born with heart defects. On Tuesday, March 17th, the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.



Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.2 million Americans now living with congenital heart disease.



[2-3 sentences saying why you care – some examples:

From an adult patient:

Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.



For a parent:

My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.



From a health care provider:

As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.





To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.



Thanks in advance for your help in securing a future for all those living with congenital heart disease.



Sincerely,



[name]

[full mailing address]

[email]

Day 48: Still doing great!

Day 48.Cow on his head!

He just woke up at 8pm. I sat him on that chair and later he was playing with those med pumps:). He likes to pushed buttons.

I was able to get out of the hospital yesterday and be home with my hubby last night. I attended a party hosted by the cardiac department here at St. Joe's. It was a fun event. I just didn't get a chance to get pictures when I was there. The event was dedicated for all the families who have babies with the heart defect. In this way, some parents can meet other families with different kinds of heart defect and share their experiences. I was in this kind of group before and those families that I met were really helpful to my family. I had a lot questions that I couldn't get any answers by just asking myself or the internet, personal experiences is more informative than online services.

Anyways, we have Nurse Gigi (Filipina)last night, and we were very comfortable leaving GJ with her. I knew her and took care of GJ since he was a baby and she is a trustworthy person. I get to go home last night, and I was hoping to get some good night sleep. However, my poor husband couldn't sleep and keep tossing and turning that wake me up all the time. I had to get up at 3:30 am and had some cereal for an very early morning snack:). I went back to bed afterwards. We got up early to be at the hospital with Gerald. We came here about 6 am and Gerald just woke up according to the nurses. Gerald slept through out the night. That is good! He probably didn't know that I was gone home.

Overall, Gerald looks really good. He have some breathing issues, but his lungs sounds clear according to all the doctors. Hoping to go home by Wednesday:) I am so excited! Then mommy can go in labor hehehehe.

Also, I would like to extend my gratitude to nurse Gigi for taking such a good care of my Gerald.
Thanks a lot nurse Gigi!