...And Where to Donate to SMA. If that's all you're here for, just jump to the bottom.
The recent success of the ALS ice bucket challenge has been phenomenal. But I have been surprised by all the articles popping up on Facebook as well that are slandering the ALSA. I guess no one can stand for an organization to get such wide spread attention without feeling the need to dig up some dirt. So it made me start doing a little digging of my own.
To be honest here, I have never really done much (if any) research on different organizations. But in the two years SMA has become a part of my life, that has started to change. And the last month has brought a completely new perspective for me. I am by no means an expert and I am still learning a lot. I am sure there is better advice out there, but here are a few things I have learned.
#1 Dig up your own dirt.
I found that a lot of the articles about ALSA were misleading. And the headlines definitely made it sound worse than it was. Before you go believing any article on the web, check their sources. Also go to the website of the organization and look around. Most charity rating sites require tax documents being tied into the webpage somewhere for the organization to get a good rating. I only found one site with them. Although that doesn't mean they aren't there.
I found this website to be the most helpful for a breakdown of the organization's finances. However, it didn't have many of the small organizations that I am aware of for SMA. So it is not a complete list. But it covers the "big" ones. When you are looking at a particular organization, if you click on the link of "full report" it brings up details of their finances. It lists program expenses and how much went to each area. It also has a handy little graph at the bottom to show approximately what percentage went to programs, fund raising, administrative, and other.
I have found it interesting to peruse the salaries of the CEOs for these organizations. After reading an article stating the CEO of MDA made over $350,000 I was floored. I didn't think a non-profit would have such a well paid staff. But I guess CEO is still CEO, even if it's non-profit. Imagine my surprise when I saw that the CEO of the American Cancer Society had a cool $2.4 million in total benefits in 2012. However, I should add that the most recent tax statement online for them was 2011 and it said he only had a salary of $832,000.
#2 Read their Mission Statement
I found this article particularly harsh regarding the ALSA. However, if you go back and read the mission statement of the ALSA, it states that their mission is care, support, and research. So no, obviously 100% of their funds are not going to research but that does not make them a fraud. It makes them fulfilling their mission goals. Support for families is a big part of most organizations' missions.
#3 What are you most passionate about?
Research? Care? Awareness? Prevention? Most organizations set up for a particular disease are going to cover care, support, and research with their funds. If you want your money going 100% to research you are most likely going to have to find a lab doing research for your disease. There are over 200 universities within the United States classified on Wikipedia as having high to very high research activity. It may take some googling, but I am betting you can come up with a university or hospital doing a study on the disease you want to give a donation.
#4 Ethical Objections
When it comes to research, I think of embryonic stem cells. They are an ethical battleground. This article was opposed to donations to the ALSA because they gave funds to a clinical trial that used embryonic stem cells. This is such a personal opinion matter that only you can decide how you feel about donating. I know that CureSMA (the largest SMA organization) is not currently doing any stem cell research but, when you donate to them you can specify that you don't want your funds being used for stem cell research. This may be true for other organizations as well if you were to contact them.
However, there are other areas to consider as well. There is a huge movement within the SMA community for everyone (like everyone planning to have a baby) to get tested for carrier status. It is not something I am passionate about and don't feel it a useful part of funding. Totally a personal thing. I was also turned off by another organization that took a stand on a political issue I strongly disagreed with.
#5 How much of your dollar goes to the cause?
MDA's site says that 77 cents of every dollar goes to their mission to fight muscle disease. The Gwendolyn Strong Foundation is completely volunteer and says that 100% of funds go to SMA. Other sites, like American Cancer Society, I couldn't find a simple statement of how much of donations fight the cause, however, they had their tax documents linked on their site. So if you are an accountant, you can figure it out yourself.
I think there is a lot to be said for donating to a "big" name charity because it's quick and easy. Most people don't have a ton of time to spend finding and researching smaller, local chapter charities. Charity is charity and whether it's 77cents of your dollar or all of it, it is going to make a difference. If you know someone that is involved with a particular disease, they most likely have the inside scoop and can tell you the small organizations. And that is what leads us to my inside scoop.
In my opinion (and definitely biased, that's why it's my opinion) the best places to donate to SMA:
For pure research: The Kaspar Lab
For research, care, and support: CureSMA
No comments:
Post a Comment