How the ALS Ice Bucket Challenge Doesn’t Work

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If you’re on social media, chances are you’ve seen a few of your friends (and a lot of strangers) get buckets of ice water dumped over their heads recently, all in the name of ALS. Amyotrophic Lateral Sclerosis – also known as Lou Gehrig’s Disease – is a progressive degenerative neurological disorder. Now, you might be thinking to yourself, “How does dumping ice water over your head help ALS?” I found myself asking the same question. Here’s my conclusion…

It doesn’t. Well, not to its full potential anyway. [Disclaimer: I’m aware that this challenge has brought a large sum of donations and awareness to ALS. The last sentence “Not to its full potential” is very important here. This is about how to make every video matter as much as the ones that are working, not to argue that none of them have.]

Don’t get me wrong – I admire the effort and applaud those who have taken on the challenge. There’s a reason why we don’t all just run around pouring ice water over our heads every day. Being cold sucks. So, if you were one of the thousands of people who put your own comfort below the hope of raising awareness for an incurable disease, kudos to you! That’s rad.

Here’s the problem, though: Most people still don’t know what ALS is. Most people aren’t watching it because they want to learn about ALS, they’re watching it because they want to see someone get doused in ice cold water. So it’s important to teach your audience about ALS, no matter what they’re viewing for. The trouble is, most of the people making the videos aren’t really focusing on ALS much. In fact, many of them don’t mention it at all (except in the title or description of their video), or if they do mention it on camera, they say something like, “This is for ALS,” and then proceed to talk about who challenged them and who they, in turn, are challenging.

Now, if you’re just in it for the ice bath, let’s be real here – you probably don’t give a shit about who challenged them or who they’re challenging, and you probably aren’t going to take the time to Google ALS and find out what it’s all about. You’ll watch. You’ll laugh. You’ll move on. I hate to be a wet blanket (no pun intended), but that’s not helping anybody.

The fundamental issue with this challenge is that if you do it, you aren’t expected to donate (or, depending on where you’re getting your rules from, you donate a much smaller amount, like $10). This blog is geared toward those who are doing the ice bucket challenge in lieu of a donation. Can’t afford to donate? That’s fine, but make your video matter. Here’s how it goes: A person is challenged to dump ice water over their head or they “have to” donate $100 to the ALS charity of their choice. Think about this rationally for a second. Do you really think that most people would rather lose $100 than dump ice cold water over their heads? OF COURSE NOT. But, most people don’t want to do either, and so they won’t. That’s free will, baby.

Then, what’s the point, right? Well, it is helping to raise lots of funds for a great cause, but the level of awareness of what ALS is and how people can help could certainly use improvement. These videos are going viral, after all. So, if you’re planning on participating in the ice bucket challenge, it’s important that you teach your viewers about ALS. Here are a few ways that you can really do it right:

  • Explain ALSThere’s no point in raising awareness for an acronym, so dig deeper than that. Tell your audience what it is! Knowing that ALS is a thing, but knowing nothing about it except that it got a bunch of YouTubers to dump ice cold water on their heads is not awareness. Knowing how it affects those who suffer from it and what you can do to help is.
  • Provide links. These videos are going viral. Do more than just talk about ALS in your video. List links to a few of your favorite ALS-related organizations and charities in the description of your video. Encourage people to donate, even if it’s just $1. If your video went viral and every single person who watched it donated $1, it would make a huge difference.
  • Donate. What’s better than raising awareness about ALS? Donating to organizations that support ALS sufferers and are working towards a cure. Again, even if it’s just a dollar. Do both. Or take the money that you would have used on ice and donate it, then film yourself explaining why.

So what is ALS? I’m glad you asked. ALS is a rare disease that affects the nerve cells in the brain and spinal cord. Over time, the motor neurons that reach from the brain to the spine and from the spine to the muscles deteriorate, resulting in muscle weakness; trouble speaking, eating, or breathing; muscular atrophy; diminished muscle control; paralyzation; and eventually, death. Its cause is unknown and although there is currently no cure for ALS, there are medications that can significantly slow its progress.

If you’re interested in helping – ice bucket or no ice bucket – consider making a donation. Your donations will be used to provide local support and services to ALS sufferers, aid global research to find a cure, and raise awareness. For a list of charities to donate to or volunteer for, check out this great list on Network for Good.

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11 thoughts on “How the ALS Ice Bucket Challenge Doesn’t Work

  1. I did a Polar Plunge for the Special Olympics earlier this year. It was a minimum $50 donation to do the Plunge into the very very cold water (the water was 44 degrees). But if you wanted to do the Chicken Plunge and sit in a hot tub it was $100 minimum donation. At the event they had Special Olympians and their families you could talk to, staff from Special Olympics North Carolina you could talk to, ect. In less than 2 months I am rappelling 30 stories down a building in Raleigh,NC for the Special Olympics, minimum donation to participate is $1000. They have held one get together so far, another one this coming Friday for people interested in participating, or who have already signed up. There is info about the Special Olympics you can take and share with people, but they also do a 15 minute presentation on what the Special Olympics are, how your funds are really helping, ect. And again, staff and Olympians and their families are there to chat with you at the event. So I totally agree, doing crazy things brings some attention (in the case of the Special Olympics North Carolina, lots of money) but the education/awareness component has to be there as well.

    Liked by 3 people

    • Tricia, thank you for your comment. We completely agree! Good luck with all of your Special Olympics endeavors – especially repelling down 30 stories!

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  2. Tricia,
    It seems like all the challenges you are doing are very well structured and clear on participant expectations- that’s awesome! Other than the Special Olympics, are there any causes that you support regularly? Good luck in all of your upcoming events! Go you!

    Liked by 1 person

  3. Amen, sista! A friend’s mom has this disease and it frustrates me the lack of knowledge sharing that is occurring. Plus what of the 10s of other of diseases that deserve similar attention!

    Liked by 4 people

    • Hi Traci,

      I realize that there have been many donations since this has started and that’s wonderful. If you read the piece, I clarify that I think the ice bucket challenge simply doesn’t work to its full potential. Mainly because there are a ton of videos out there that do not mention ALS at all, or do not discuss the disease more than just saying “This is for ALS.” Also, a lot of people who are doing these uninformative videos are doing them in lieu of a donation, which really isn’t helping the cause in any regard. There are, clearly, plenty of people who are doing it right and making a difference with their videos. There’s no argument here that it has raised a lot of money, but the awareness could certainly improve.

      Liked by 1 person

  4. Actually, you’re wrong. Donations to the ALS have gone up 10x the last month over the averages of this time if the past 5 years. If people don’t exactly know what it is, but they’re willing to donate, so be it. Anyone attached to ALS donates sites will tell you the calls of small donations, $10-$50, have gone up 50 times recently.

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    • Corey,

      Again, the argument here is not that they aren’t raising money. One of the first sentences of this post asks how the ice bucket challenge works and answers, “it doesn’t. Well, not to its full potential anyway.” I am not arguing that donations haven’t been happening. My argument is that a large portion of the videos do nothing to explain the disease, and therefore, are not as effective as they could be, both for general awareness and inspiring others to donate. I don’t think that viewers of uninformative videos are very likely to donate because they don’t understand what it’s for.

      Liked by 1 person

  5. Hmmm. I think then the title of the blog entry is the issue. Even if further down you say that the donations have increased, by titling your blog, “Why the ALS Ice Bucket Challenge Doesn’t Work” , you are potentially hurting ALS charities by discouraging people. If your followers think that you think this is a waste of time or no big deal, they are more likely to roll their eyes and ignore it. Your title is what shows up prominently in search results and when the blog is shared. Additionally, you use bold type when you answer, “How does dumping ice water over your head help ALS?” with “It doesn’t” . I am not surprised then that readers want to point out the upsurge in donations and attention (clicks) on ALS pages in defense of the challenge.

    My answer to you is Baby Steps. Getting people to be aware of the existence of a condition called ALS even if they do not understand it or know what the letters stand for is just the first step in public awareness. And there will be those whose curiosity will cause them to google it and find out more. And that increased public awareness is priceless to ALS organizations.

    I hope you redo or change the title because your idea that in addition to the fun of watching your friends dump ice water on themselves it would be good to get more information out is a good idea. I agree that using the full name at least once is a wonderful suggestion, as is including links to an ALS information site. However, these great ideas seem to be lost because people are distracted/confused by what appears to be a negative title that by itself would discourage people from participating.

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  6. Ok I so do not agree at all.. the ice bucket challenge is working!!! I know ppl with als and also ppl with als are doing this challenge. .. yea your right people prob arent going right to google and looking up als but I personally know people who didnt even know als existed until this challenge happened so it is absolutely doing what its supposed to do… There is a significant growth in concern and awareness for the disease. Even if people dont have the money to donate or even if they do they are willing to look silly and be “uncomfortable” for maybe someone who didnt know about als to be challenged or to watch and be willing to donate or even just know this horrible disease exists and are willing to do what they can to raise awareness or to raise money.. go ice bucket challenge!!

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    • That’s awesome, Kendra. Videos that do a good job of creating awareness for the cause are absolutely working. You’ll notice the line that it simply isn’t working to its full potential. If everyone made their videos more informative, the impact could be even larger!

      You’re correct that not everyone has the money to donate, and of course that’s okay. When it’s not helping anyone (or when I feel it is not) is when they neither donate nor mention ALS in their videos. This is about how to make videos that matter.

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