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:
- The Children’s Heart Foundation
- The Adult Congenital Heart Association
- Mended Little Hearts
- Your Local Hospital’s Pediatric Heart Institute (if you need help – contact me and I’ll help you find one)
- Saving Little Hearts
- Saving Tiny Hearts
- Camp Del Corazon
- Camp Odayin
- Hope for Tiny Hearts (Chloe Duyck Memorial Fund)
- Whole Heart Foundation
- There are many more heart camps, care package groups, support groups, and other foundations. If you’d like me to add yours to the list, just contact me and let me know about your organization and what you do. Note: I will not post any organizations that charge heart families for access or membership.
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.