How Do You Know Which CHD Organizations to Trust?

Chances are if you or someone you know is affected by a CHD at some point you’re going to want to donate time, money or goods to an organization helping with some angle of congenital heart disease. I read a lot of updates accusing this organization or that organization of not helping.
I’m not going to name names here. That’s not what this post is about. In fact, it was inspired this morning by another charity. One that has allegedly duped a lot of people, Angel Food Ministries, whose founders are facing fraud charges. I’ve heard of Angel Food a million times and know a lot of people that used them at one point or another.
I have no reason to believe, and am not accusing, any CHD-related org of doing anything fraudulent, but truth be told, nonprofits are not created equally. I think many of us, myself included, have a Utopian notion when it comes to nonprofits. We think that everyone involved only wants to help and is scrimping, saving and doing without to further the cause. It’s not the case. Nonprofit does not mean greed doesn’t exist. It does not mean that all the organizations working on a similar cause sit down and work wonderfully together. There is competition. People and organizations do elbow out other people that could perhaps do a task better and more efficiently, just to get recognition.
It’s easy to read about something like Angel Food Ministries or a status on Facebook about this charity or that charity not helping and shut down. To not support any of them and to trust none of them. I urge you not to do so. We need good, accountable non-profit organizations with good interests.
Research
Did you know you can look at an organization’s IRS tax papers on Guidestar and Charity Navigator? Before you donate and get too wrapped up, do so.
This is an extremely simple one, but Google the name of the nonprofit. Also Google the name of the nonprofit and phrases like “scam” or “drama” to see what pops up.
Is the organization acting with transparency. On the group’s web page and social media pages, do they make it clear where they get their funding and where it’s going to?
Ask Around
Don’t cause a scene, but privately ask others in the cause community, in this cause the CHD community for reviews of different nonprofits.
Email the executive director, communications person or membership director and start a dialogue. All the CHD orgs are small enough that you should get and deserve a tailored response to your inquiry. Call them up. You can tell a lot by a phone call.
If you’re going to give time, money or resources to a group, you should expect to be able to reach their leaders and to speak to them. Don’t discount your worth.
Personally, I think one of the best ways to decide to support a group is to spend time and speak with them.
Is It Legit?
Before you give money to any nonprofit, make sure that it’s legal. While most of them have good intentions, there are a lot of groups that call themselves “Foundations” or “Organizations,” but have no legal standing. It can be confusing, but if that’s the case, see if they organization holds the money or if it goes directly to somewhere else. For example, with Operation Healing Hearts, the money donated goes right to Preemptive Love. I don’t even have access to the money part of things because OHH is a grassroots organization, not a legal and registered nonprofit. Know what the group you’re donating to is doing and how they’re set up.
Don’t just take their word for it if they have the word Foundation behind the name. Cora’s Story is a registered nonprofit in Indiana, so we’re legit. We don’t fundraise much, if at all, so we didn’t see the government 501 status. But, you can still find that we’re registered by searching.
Remember, grassroots organizations are just fine, but to my knowledge, they really shouldn’t be accepting money without some sort of legal standing. Sometimes grassroots organizations can do things that the bigger organizations can’t so don’t think that they’re bad, at all.
If the organization doesn’t appear on Guidestar, most likely they’re just a state charity, which is fine, but look into it. Find out what state their registered in. I think you can find this online in most states. Cora’s Story wouldn’t appear on Guidestar because we’re registered only with the state (and have an IRS tax number, but aren’t a registered charity). For example, to search for Indiana, I’d search for “Indiana secretary of state” or something similar. I then look over the website until I find business registrations and search for Cora’s Story. Presto, here it is.
I’m using my charities as an example, not to say that they’re better than any others. In fact, we’re not even focused on the same goals as many of the other groups, and I consider us to always be a small entity. I hope that by using my groups as an example, you can learn a bit more about how to see if a group is legit.
If you really like a group, but can’t find anything online about them, call or write and ask them to direct you to the information. They should be more than happy to do so.
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Please don’t let one bad apple ruin the entire harvest. Your help is needed.
Any other words of wisdom? How do you research a nonprofit? Please DO NOT name the names of any organizations in the comments.
- Spreading Congenital Heart Disease research, resources, and information in memory of Cora.









