Confession time

I have a confession to make: I hate Jump Rope for the Heart.

Then another confession to make: I hate that I hate Jump Rope for the Heart.

Yes, I’m totally conflicted on the subject. I know it’s a good thing as far as raising money for our school. They teach kids the importance of healthy eating and living an active lifestyle, which are all good things. As someone who is interested in children’s health issues in general, I think education on the dangers of childhood obesity is crucial to our children growing up and living healthy lifestyles.

So every year, when our elementary school sends out the AHA’s flyer, I try not to be annoyed with the whole Jump Rope for the Heart thing. And every year, I fail miserably.

Maybe it’s because I know that of every dollar donated to the American Heart Association, only $0.30 is used for research. The remainder goes to administration, education and fundraising efforts. Of that $0.30 only $0.01 is directed to research for congenital heart defects.

Maybe it’s because I know that their main focus is adult onset heart disease, which is admittedly a huge problem in this country. But it’s not the type of heart disease Colman suffers from. Adult onset heart disease is brought on by lifestyle choices such as unhealthy eating, drinking to excess and smoking.

In contrast, kids with congenital heart disease make no choices in regards to the health of their hearts. It’s through no fault of their own their hearts are messed up. They’re born that way, and little is known about the cause of most congenital heart defects. There is no known prevention or cure for any of them. Each year, 40,000 babies are born with a congenital heart defect. Thousands of those babies will not live to see their first birthday.

Maybe it’s the fact that year after year the AHA exploits the stories and pictures of the adorable kids who suffer from congenital heart disease on their shiny brochures and educational materials while funneling the majority of their research dollars to help somebody like this guy.

Image

I think you can understand why he might not be quite as persuasive in getting people to open their checkbooks as a chubby toddler with a chest scar.

I wrote a letter several years ago to the principal when our school first started doing Jump Rope for the Heart that stated pretty much the same thing I’m saying now, but I know I was a lot nicer about it then. My request was simply that parents of students who were participating in Jump Rope for the Heart be given the option to write “Legacy of Life Endowment” in the memo line of their check. I’m told that if you specify the funds in this way, the AHA cannot use the funds for administration fees, but the entire amount goes into the endowment fund which is specifically used for congenital heart defect research. The principal said he’d look into it. I received a reply back that was something like, “Thank you for your letter…The AHA states that they’re the biggest contributor of congenital heart defects research behind the federal government.”

I died laughing in my coffee.

The truth of the matter is, federal funding for CHD research is pretty low, so the fact that the AHA is second behind the federal government is not necessarily something to be proud of. Don’t get me wrong. I appreciate the dollar they set aside from every $100 they receive to fund research into kids like Colman, but I’m disappointed in the AHA because they have the ability and infrastructure to do so much good in the congenital heart defects arena and they just don’t do it. It’s such a lost opportunity.

When it comes down to it, I will donate to Jump Rope for the Heart. There’s always some little toy (Think dime store junk.) that Colman would like to have and I don’t want him to feel excluded because of my personal beliefs on the subject, even though I doubt he could jump rope for five seconds without his heart tiring out.

And I’ll write “Legacy of Life Endowment” in the memo line and cross my fingers that they don’t use my money for old man angioplasties.

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5 thoughts on “Confession time

  1. Hi heart mom,
    I just started reading your blog and I am outraged by the AHA even more now. My son has HLHS and every year we raise over 20k for the AHA. I knew not all of the money went to research and even a smaller portion went to CHD but now I refuse to continue supporting AHA. That being said do you know any organizations that are based on CHD? Also, I am in the process of starting my own non-profit organization to help support families through their heart journey. Any suggests as a heart mom on things that you would have liked to receive during one of your stays at the hospital. Thanks for sharing your story and your information.

    Sarah-heart mom to Kayden

    • Hi, Sarah.

      The Children’s Heart Foundation is committed to congenital heart defects research. I think they are the biggest nonprofit committed to helping our kiddos through research. They have a very low administrative cost so that you get more research out of each dollar.

      As far as care packages, I think maybe some little gowns that snap up the front, pens and paper for writing down questions, chapstick (hospital air is so dry!) and that sort of thing would be helpful. I know Aden + Anais have some blankets devoted to congenital heart defects. They may be willing to part with some as a donation or maybe at cost if they were going to heart families.

      Let me know when you get the nonprofit up and running. Good luck to you. 🙂

  2. I agree with this 100%! I am very thankful to the Children’s Heart Foundation for their commitment to raising funds for congenital heart defect research. My family also has an organization, Hearts of Promise. We are a non-profit organization and give every dime we make to Dr. John Mayer’s cardiac tissue engineering research at Children’s Hospital Boston, in which Dr. Mayer hopes to one day grow a valve from a child’s own tissue. We have raised over $200,000 so far. We even pay for expenses out of our own pocket because we want every penny possible to go to research that will help our daughter and so many other children. I think the AHA is a great organization, but like this article states, very little of their funds go to CHD research. It makes me cringe when I see them use our children to raise money. So many CHD parents raise funds for AHA vs. other organizations, like Children’s Heart Foundation and others that send all of the funds raised to CHD research. Heart parents can make a huge impact if we all work to raise funds for research, like Dr. Mayer’s, that will actually benefit our children. Parents can hold a walk, have a bake sale, etc.. and even send a check straight to the Children’s Hospital Boston (or CHOP, etc.) themselves, and designate it for CHD research.

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