This summer, the ALS Ice Bucket Challenge videos went viral, largely supported by buzz about celebrity videos. I mean, who doesn’t wanna watch their favorite actor get soaked? And if the three GLORIOUS minutes of watching some hot guy get wet aren’t already good enough, it’s raising money for charity. What could possibly be the downside?
Soon enough, I found myself watching my own mother’s challenge video, in which I was finally nominated. We’ve all seen the kind of activism that spreads via social media, and the fact is, it usually doesn’t amount to much. So before I took that plunge, I took the time to read up on the concept behind it and the benefits provided by the influx of donations. It turns out, the ALS Association had reported $41.8 million donated between July 29 and Aug 21. Just eight days later, the organization reported that the amount received totaled $100.9 million. I’m no doctor, but I think any medical research will benefit from a donation that size.
Slacktivism accusations laid to rest, I happily nominated my uncles (Ahem—I have yet to see results, guys) and a local family doctor before having five gallons of ice water dumped on my head. All is well that ends well, as no one says anymore.
A couple weeks later, a respiratory therapist in the hospital where I work told me about an article claiming the majority of funds were used in salaries. I’ve seen the spreadsheet of charitable organizations whose use of donations are pretty questionable, but I just didn’t buy it in this case. The ALS Association isn’t the only foundation of that nature in the US, and the UK has their own version. The likelihood that a research foundation was misappropriating donations seemed a little unlikely. Still, I looked it up for myself.
The article originated on PoliticalEars.com, and made the statement that only 27% of the money is used for “the cause.” Regardless of the graphic posted in the article, taken straight from the ALSA site, the tone of the article implies that only 27% is going to anything related to the disease. So, I read the 22-page financial report produced by an independent auditor. And the multiple pages of information on the website. Here’s how it shakes down:
The ALS Association allocates a total of 7% to “Administration.” The rest are divvied up between research, fundraising, public and professional education, and patient and community services. All told, 93% of the funds received via donations are used for services of some kind. Regardless of whether or not the company intends to spend your personal donation on their salary, there are contingency options in the donation process. If you want to specify what area your money does or does not fund, you simply fill it out on the form. Already donated? You can submit an email to the association to clarify what purpose your donation was intended for.
Yes, the internet played a huge role in sending this fundraising activity into overdrive. Yes, it was a very simple and easy way to be involved in a charitable event. But while it may seem easy to draw parallels from this to other “Facebook activism,” that just isn’t the case. The ALS Association has more than doubled their received donations from last year, as have the other similar organizations. Let’s all just take a second to think about what medicine might be like in ten years because of this influx in cash.
ALS is a terminal diagnosis in which the patient slowly loses motor control, becoming increasingly paralyzed over time. This may be a year, it may be ten, but it will always result in the death of the patient. Prior to the recent events in ALS awareness, only about 50% of the population was aware of what the disease was. After the viral video sensationalism of the ice bucket challenge, there is a little more hope to unraveling the disease and finding more effective treatment. I just hope it’ll work again, on other causes, with similar success. We could change a lot in this world with results like these, and we should be trying, whether the video camera is on or not.
To learn more about the kind of research that may lead to these treatments someday, I encourage you to check out the ALSA website, which is an absolute cornucopia of information.
To read the article that sparked doubts, click here: