The Lay of the Heartland, Part Four: Frenemies

After my last two posts about my love affair and break up with the American Heart Association and my dislike for Jump Rope for Heart advertising CHD but not funding it, you might be on my side of this fence.  You might still be a huge AHA fan and nothing I say will dissuade you from your support, or you might be ambivalent because where else are you going to go for support?

If you’re like me you’ll just walk away from the AHA, not try to work with them, not call them, certainly not raise money for them.  Until now, I’ve never really publicly called them out on their tactics, but I’m also so busy trying to raise money and awareness that will actually help my child that I don’t want to waste too much of my energy fighting or reforming the American Heart Association.  It’s not that I don’t have faith in myself or belief in the David and Goliath metaphor, but my son is eight and I want him to be eighteen, twenty-eight, forty-eight, eighty-eight, and this isn’t the fight for me.

What I’ve done instead was to make new friends.  I had a great day yesterday at the state Capitol with ladies from Mended Little Hearts, and I’m the president of the Colorado Chapter of the Children’s Heart Foundation.  I encourage, support, and donate to heart institute programs at several children’s hospitals from LA to Philadelphia, and I support grass roots groups as much as I can.  This is what I’ve chosen to do, and I’ll provide a list of places other than the AHA where you might make new friends if you choose to follow that path.

That said, many, many CHD families know and accept that the AHA is short-changing their CHD kids but work with them anyway.  I ascribe this to “The Devil you know,” situation.  They know that the AHA isn’t going to fund research for their kids but the AHA is huge and even a part of $10 million is better than nothing.  Some of them want to change things from the inside, and I find that noble.  I just don’t have the energy for that and after nine years I’ve seen no change at all, so my faith is weak.  I welcome success stories but I’ve not really heard any even though I’ve got my ear to the ground of the Heartland.

Then there are those who let their kids do Jump Rope for Heart because their kids don’t understand the funding lie and they want to feel they’re helping a CHD kid like their own brother or cousin.  There are families who let their kids be used for promotional materials and press, just like I let Liam be used.  I hope that like me these families don’t know when they let their children be exploited that the 99% of the money raised isn’t going to help their kids.  If they do it after knowing that I just have to imagine that they want and need the validation.  I understand that – I needed that once too.  I also understand why families do the AHA Heart Walk to feel like they’re part of something.  I get it, I don’t judge it.  I just wish things were better.

When the American Heart Association uses/exploits CHD kids and adults I also wish I could take some comfort in the fact that they’re raising awareness about CHD.  I just wish that they were given better targeted messages like:

  • Congenital heart disease is a BIRTH DEFECT and totally different from their other programs
  • CHD cannot be cured and except in very unusual circumstances cannot be prevented.
  • No amount of good habits and healthful behavior will reverse or cure a Congenital Heart Defect

Right now these messages are mixed.  There are those who would say that a healthful lifestyle is just as or more important for kids and adults with CHD, and I don’t disagree with that, but THAT is not the message.  The message is that everyone should improve their diet and exercise and CHD is a red herring.  When Kate Jackson says, I was healthy but this happened to me, it is horribly misleading.  She was BORN that way, it didn’t happen to her.  We need to take back the language of this disease and separate it wholly and completely from coronary artery disease and other adult onset heart issues.  Until the message is clear, this awareness is misleading at best and damaging at worst.


2 thoughts on “The Lay of the Heartland, Part Four: Frenemies

  1. You know I absolutely agree with you on the AHA. Our experiences were too similar – I started out with a small team the year Madalyn turned 1 to do the Heart Walk. I too had to show the nasty old bat handing out red hats Maddy’s scars before she would give her one (I wonder if they specifically recruit cranky old women to hand out the hats since you are in Colorado and I am in Ohio). The next year I stepped it up with my fundraising and specified directed donations to an endowment that existed at that time. After repeated requests that our team’s money be sent to this endowment I was nastily told, “Fine. We will do that this time – but your team won’t get t-shirts.” Really??? You think I am raising money so I can get a ******* t-shirt??? THAT was the end of my relationship with AHA.

    Now, I do have to say, two years ago our school did Jump Rope for Heart. It was arranged without staff knowledge – just an e-mail that it was happening. I did educate the person who organized it and we have not done it since. But since it was already happening, I did let my girls participate. It was the first time both of my girls stood up and became advocates for themselves. They allowed their stories to be used and Olivia spoke to the entire school about what having a CHD meant. So I feel that some good did come of the entire situation even though I was aware that none of the money we raised was going to make a difference. But it was more personal to me. My girls both took ownership of their CHD’s and found their voice to speak up – that was priceless. And I decided the dance with the devil wasn’t too much to ask to have that happen.

    But we are now finding other ways for the girls to advocate that doesn’t have to do with the AHA. We are working with a research organization at Ohio State University that is doing amazing research specifically targeting CHD’s. We are raising money for them knowing that every single penny we reach will be going specifically to the lab. And the head researcher there is amazing and loves our kids. We are also working with the CHF – their cause is much more worthy.

    Thank you for using your influence to get these issues out there! It needs to happen!

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