Wednesday, March 18, 2009

Please Read!!

Act Now By Contacting Your Senators & Congressman!

Dear Family and Friends

You did it! Thanks to all your letters, emails, and visits, and the efforts of our partners in the National Congenital Heart Coalition and at the American College of Cardiology, late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! 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 - (Templates below)
3) Make your letter personal to you. The 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! Please forward this email to friends and family to request their participation.

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.

Need more information? Contact advocacy@itsmyheart .org with any questions.

TEMPLATE SAMPLE LETTER

Dear [Lawmaker name here]

I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday 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 1.8 million Americans now living with congenital heart disease.
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Insert 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.

For a family member or friend:
My grandson was born with a complex heart defect and underwent three open heart surgeries before he was three. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help my grandson 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.
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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.

Sunday, March 1, 2009

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Updating with Photos

I bet everyone has been wondering where I have been and why there are not more photos! Well two kids can keep you busy! Plus my new volunteer work with the Dell Childrens/Milagros Foundation has had me very busy also. Today Jason took the kids to the park and I have some alone time and decided to catch everyone up on the Todd family.

Everyone is doing great. Joshua turns 3 on March 7th!!! I cant believe it. He is getting too big:-) for his own good! We are tackling the potty training. And well....it is a work in progress. Seems he is like me and very stubborn. But we will get there. He has his own friends and is a very smart and happy boy. His favorite thing to do is build things. Can spend the whole day doing that! He also just got a bunk bed. His Granddad and Grammy took him out shopping for new sheets for it. He enjoyed going on his first outing with them. And, from what I hear so did his grandparents, so they might be doing that more:-)

Nathan is doing well also. On March 28th we will celebrate one year post op!!! I can not believe it has been a year since his heart surgery. Time has flown. His scar is hardly noticeable. He is walking, and saying some words (only me and Jason can understand;-) ) He has an appointment for his 15 month checkup next Friday so I will fill everyone in on how he is doing. He also has a cardiologist appointment on April 3rd. I always get nervous before those appointments but I am slowly learning to never look too far ahead. It just makes it hard to enjoy what I have at this minute. Nathan is completely off his beta blocker and is sleeping much better. Now we are dealing with teething pain but I can handle that! I am completely amazed by Nathan. He has such a cute personality. He is learning to get his way too:-) Just like his brother!

Ok so I am going to post some random pictures but I will need to split them in multiple posts.

Hope everyone is well!

Laura