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What is the ALS Ice Bucket Challenge and Is It Doing Any Good?

What is the ALS Ice Bucket Challenge and Is It Doing Any Good?

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:

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Photo credit: Thinkstock.

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9:54PM PDT on Sep 13, 2014

In California we're experiencing a drought. There isn't another way to raise awareness and fundraise?

4:25PM PDT on Aug 27, 2014

Thanks for sharing.

9:40AM PDT on Aug 27, 2014

If you are concerned with the waste of water, take the rubble bucket challenge from Gaza. In order to participate in the challenge, they use buckets of rubble and sand, since there is no longer any water there to pour, nor electricity to make ice, due to the Israeli bombings. This is real:

http://www.fastcompany.com/3034806/fast-feed/gaza-based-journalist-launches-rubble-bucket-challenge-to-support-palestinians

12:58AM PDT on Aug 26, 2014

Its a fun idea, but I do not support the Ice Bucket Challenge due to it is a HUGE Waste of Water!! I am glad to see they are raising awareness & money though. Hopefully they will find a cure soon.

5:06PM PDT on Aug 25, 2014

I did the challenge! I wish there were more things like this getting mass attention. could you imagine how much better the world would be if we addressed issues with this kind of marketing and awareness every few months!

3:05PM PDT on Aug 25, 2014

Hard to criticize a campaign that benefits so greatly people suffering from this disease. I hope with all this new money inside their research coffers that they find new, better and more beneficial ways to research than to use animals-- didn't know they used animals for research before Pamela Anderson refused to take the challenge-- I guess this challenge has highlighted this fact as well. However I'm still very happy that this challenge has raise awareness and raised a lot of money for them. Thanks for posting.

12:26PM PDT on Aug 25, 2014

Yes, genes can definitely play a role in this awful disease, but since it's on the rise, one has to question WHY? I've known many, many people, of all ages, who have been misdiagnosed with neurological diseases such as ALS, MS, Parkinson's (and Lupus), all of whom had Lyme disease as the underlying cause of their neurological symptoms. No small wonder that Lyme is referred to as the Great Imitator.
Please understand that I'm not minimizing ALS or any other disease, but always consider Lyme disease as a possibility when being given such a dire neurological disease diagnosis. Knowledge is power...

10:58AM PDT on Aug 25, 2014

It's an attention getter a silly fun idea and a great way to raise money.....but people should realize that you don't need a bucket of ice dumped over your head in order to give money to ALS research.

1:20AM PDT on Aug 25, 2014

Anytime you can find people willing to do something for a good cause it can't be that bad. I just wish more money actually went to ALS funding only a small portion goes to help fight this horrible decease.

10:31PM PDT on Aug 24, 2014

Thank you

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