Give them a break

I heard it again last night!

Every so often I’ll hear (or read on a blog) frustration or anger aimed at the American Heart Association. “The American Heart Association only allocates 2% of its funds (or 3%, or 1%… the number always seems to change) to Congenital Heart Defect research! This is a shame and disgrace!”

Umm… I hate to be the bearer of bad news, but that is not their job. As proof, I offer the Association’s own Mission Statement, copied from their website:

The American Heart Association is a national voluntary health agency whose mission is: “Building healthier lives, free of cardiovascular diseases and stroke.”

In fact, the American Heart Association deserves a pat on the back – even though they normally only work to eliminate cardiovascular disease and stroke, for many years they were the only Heart Advocacy group around. Because of this, their website maintains several good pages about Heart Defects (look HERE and HERE for two examples; there are other pages as well ); they offer a 64 page booklet titled If Your Child has a Congenital Heart Defect, and also has a good webpage for Adults living with a Heart Defect.

The American Heart Association controls the Legacy of Life Endowment, a national campaign to raise one million dollars for Congenital Heart research. Florida also has the American Heart Heroes, an Association program that helps sends kids with Heart Defects to Camp Boggy Creek, a camp for seriously ill children north of Orlando. Broken Hearts of the Big Bend, the great CHD Support group located in Tallahassee, works closely with the American Heart Heroes program. And you can designate a donation to the American Heart Association for CHD causes, with the assurance that is where it will go. Just write “For Congenital Heart Defect causes” or “Legacy of Life Endowment” on the memo line of your check.

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7 Responses to “Give them a break”

  1. Carolyn Compton Says:

    Is it a volunteer organisation?

    • Steve Says:

      Yes it is, Carolyn! The largest Heart organization in the US, and probably one of the larger volunteer groups in the world!

  2. Carolyn Compton Says:

    Thanks Steve; People criticising volunteers is very strange!

  3. Barbara Charles Says:

    Steve, I understand what you are saying. But here is some of my frustration.

    The overall organization of the AHA is very good at what they do, and you are right, they follow their misison statement. And some of the local and regional chapters are very helpful to families of children with CHD’s. However, I have tried to work with our local chapter and that is where my frustration came from.

    I have been told repeatedly that I CANNOT have donations earmarked for CHD or Legacy of Life. I finally gave up, even after copying and sending them notes from their own website and speaking with “higher ups.” So much of our frustration stems from working with our local chapters. And no, these are NOT volunteers. The people I spoke with are AHA employees and receive a salary for the work they do.

    The final straw came at the last heart walk we participated in when the woman working at the registration tent did not want to acknowledge my daughter as a survivor. I had to finally ask her if she wanted me to show her her scar! Now that is ridiculous! I realize that woman may have only been a volunteer – but they at least need to better educate their volunteers. It was not her place to argue with me especially when I had just handed them a check for $2,000.00!

    The biggest beef we have is that if you are NOT going to support CHD research in a bigger way then quit using our kids!!! If this subset of heart disease is NOT your focus, then quit pretending it is! I KNOW our children are much cuter than the middle-aged, overweight American that is your main target group. HOWEVER – they don’t make such pretty pamphlets now do they?

    THAT is my biggest beef with the AHA. Don’t parade our kids up and down when it comes time to raise money and use them on national commercials – and then pretend they don’t exist when it comes time to hand that money out.

    Climbing off my soapbox now!

    Thanks!

    • Steve Says:

      Barbara, it sounds like the AHA Home Office needs to have a heart to heart talk (pardon the pun) with your local chapter. Legacy of Life is a NATIONAL program. (American Heart Heroes is Florida only, I’m pretty certain)

      Of course, if they persist, I would find a local CHD support group and donate directly to them, if CHD causes is what you choose to support. A hospital with a good Pediatric Cardiology department can probably steer you to one.

      Thanks for reading;

      Steve

  4. Andrea Says:

    I’m with you Steve. We have supported the AHA every year since Drew was born and I often hear other CHD families criticizing them. The fact is that the research that the AHA does benefits our children. Their research on CPR, bypass, new valves, and other biomedical research all affects our children who are having heart surgery. I have had a hard time finding information specific to how much they donate to CHD research, but I finally met someone that I am working with at the AHA and she shared some statistics with me. Their funding for pediatric cardiac research is second only to the federal government and much of this money goes to research how the heart develops before birth and how congenital heart defects develop. We are happy to support them and will continue to do so.

  5. Karen Thurston Chavez Says:

    Steve,

    Thanks for this post. It’s easy to get frustrated with the AHA for not putting CHD more at the forefront. But the fact is, 500,000 Americans die each year from heart acquired disease — a preventable disease. While AHA may not focus on CHD, they do support us. AHA updates this document each year: http://www.americanheart.org/presenter.jhtml?identifier=3028662. It gives specific info about what they do for children’s heart disease.

    And if AHA wants me to share my story about my son, I will do it every chance I get. What a fabulous and credible platform to talk about and educate an audience about CHD. I’ll take it!

    Keep up the great posts, Steve! You rock!

    KTC

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