By now most of us have seen or at least heard about the ALS ice bucket challenge and all the celebrities that have taken up the cause, but is the ice bucket challenge really helping raise awareness about ALS?
What is ALS?
According to the ALS Association, Amyotrophic lateral sclerosis (ALS) or ”Lou Gehrig’s Disease” is a progressive neurodegenerative disease that attacks the body’s motor neurons. When motor neurons die, the regions of the brain that initiate and control muscle movement can no longer exercise that control, leading to a progressive loss of muscle control for the sufferer which, in time, may cause some sufferers to become totally paralyzed. The disease is, unfortunately, fatal.
In the United States, new ALS diagnoses are given to about 5,600 people every year, or roughly 15 cases a day, with about 30,000 Americans having the disease at any on time. Usually, ALS impacts people between the ages of 40 and 70, though rarely it can affect people in their 20s and 30s. ALS tends to impact men over women but, as a person’s age advances, the more equal is the chance of developing ALS no matter one’s biological sex.
There is currently no cure for ALS and treatment options are limited — though are steadily getting better. Today, about half of all people given an ALS diagnosis live for at least three more years, while a quarter live for five years or more. Only about 10 percent will survive beyond ten years, but more research funding could help change that.
Why the Ice Bucket Challenge?
The ice bucket challenge as we know it today began with Pete Frates, resident of Beverly, Massachusetts, and his family. Frates is a 29-year-old former Division 1 college athlete who was recently diagnosed with ALS. The Frates wanted to raise awareness about ALS and so began the ALS ice bucket challenge as a local fund-raising event. They posted some videos to social media (under what would become #TeamFrateTrain) and, from there, the ice bucket challenge grew into the version we know today.
Nominees must donate money or poor a bucket of ice water over themselves (they usually do both) after which they nominate around three people to also take up the challenge which must be completed within 24 hours. The challenge has now been taken up by thousands of people, many of whom have recorded videos of themselves, including many celebrities like Oprah, actor Tom Hiddleston and singer Britney Spears.
Is the ALS Ice Bucket Challenge Doing Any Good?
Well, it depends how you measure “doing good,” but by most standards yes.
The ALS Association has announced that, as of Saturday, it has received $11.4 million in donations compared to $1.7 during the same period of July 29 to August 16 last year. Those donations have come from existing donors and about 220,255 new charitable people.
If we wonder whether the challenge is actually raising awareness for ALS, we have some data on that too. I’ll shamelessly steal this from #TeamFrateTrain’s Facebook page, but this is a look at Google’s search data over the past month or so. The red line represents the uptick in searches relating to ALS as of August 13 and as you can see, it is quite dramatically outpacing the ice bucket challenge in blue:
We would expect that, with a new wave of celebrity involvement, the ice bucket challenge term will start to catch-up, but even so this is quite compelling evidence that, at the very least, people are wanting to know what is behind the ice bucket challenge and why this is a worthy cause.
There have been criticisms relating to the challenge, though. Many seem simply disdainful that a charity is benefiting from our viral meme culture, but a more substantial concern is that while the ice bucket challenge is definitely doing good in the short-term, it might be that fatigue will quickly set in and within a few months at most, attention and charitable giving will dry up and return to normal levels. We might say that this is to be expected, but it does raise the interesting question of how we can sustain such attention without giving in to crass ad campaigns, like the sexualizing ads used by PETA (which, incidentally, don’t work) or the constant bombardment of political ads from both Democratic and Republican candidates alike.
However, looking at the situation right now, and from what little data we do have, it really seems that this campaign is not only working but encouraging a lot more people to take notice of this cause — and people are having a lot of fun doing it.
You can follow the latest news on this charity drive with the hash tag #IceBucketChallenge on either Facebook or Twitter, or a trusted websearch. And now to finish, I provide you with what is my absolute favorite ice bucket challenge video so far, the Foo Fighters and their horror film Carrie twist. Enjoy:
Photo credit: Thinkstock.