The Lay of the Heartland, Part Five: You Have Options

The last thing I want to add is that millions of Americans mistakenly think that the AHA has our kids covered, but we can see that both at the nonprofit and government level CHD research is sorely and dangerously underfunded.  It’s important not only that we as advocates know this but that we understand the limitations so we can motivate others to help us change things.

Now I’ve said my peace about the American Heart Association.  Unless I see some massive reform movement from them, I’m pretty much washing my hands and don’t expect me to rant and rail about them because that’s not my style. I’m a positive person, and the AHA brings out my darker side.  I like to end on a pragmatic note and share with you several organizations fight congenital heart disease that might offer you support, validation, research funding, or simply a sense of good will.  If you choose to hang with the AHA I won’t judge you – I’m don’t like judgmentality it’s an unhealthy state.  But if you’re looking for another place to raise money or make friends, here’s a starter list:

This concludes my five part series.  As I said at the beginning, I may add a rebuttal from a friend about the American Heart Association if she provides it, but for now, feel free to share your thoughts on these topics.  I may have some “influence,” but like I said I hope I only influence to make your own decisions not to follow me without thought.  I welcome your thoughts and your experiences.


10 thoughts on “The Lay of the Heartland, Part Five: You Have Options

  1. Can I respectively add another option? Chloe Duyck Memorial Fund, hope4tinyhearts.com, volunteer run, under an umbrella of a research org, all funds directly to research.

    1. Of course! This is why I want feedback. I know there are good people out there doing good stuff but I don’t have connections to all of them. Can you send me Chloe’s web site and I’ll update the page.

      1. Never mind, I figured it out! I welcome guest bloggers to contact me if you want to write about your own fundraiser and what you did to ensure the money you raised went where it was needed. Thanks!!!

      2. Great idea. And, by the way, I’ve heard there is a CHD endowment of some sort with the AHA, but it sounds like from your experience getting funds directed to it isn’t easy, if it even still exists

    2. It was called the “Legacy of Life” Endowment and it was restricted to $10,000 individual donations. I cannot find it on their site any longer. A web search finds old third-party web pages that mention it, but I can find no active endowment.

  2. You may also look at the newly formed Whole Hearts Foundation. It was started by Matt Hammitt, the lead singer of Sanctus Real, whole son has HLHS. The foundation will provide direct assistance to families in need and also fund local grass roots programs. The website is http://www.wholehearts.org

    On a personal note, thank you for posting this series. I knew a lot of this but didn’t have all of the facts. This is so important for all support groups and CHD parents to know.

  3. You are amazing and so wonderful at being that advocate we all need for our kiddos. Thank you for letting us know about your experience with the AHA. I hope one day the will wake up and do right by our children.

  4. Once again I want to thank you Amanda for your powerful and honest words that help everyone in the CHD world. You are INFLUENTIAL and an INSPIRATION! You seem to always put how I feel into perfect words. I read what you write and always think, “YES! YES! That is exactly how I feel and what I think!” So thank you and know that you are AWESOME!

  5. I just wanted to say thanks for this series. I knew this too, but as others said, I didn’t have all the facts either.

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