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What Can We Learn From the ALS Ice Bucket Challenge?

I think it may have finally happened. For the first time in approximately two months there doesn’t appear to be any mention of the ALS Ice Bucket Challenge in my Facebook news feed. But even if the extensive coverage of this subject is finally waning, I still find myself thinking about this viral fundraising sensation.

If you’ve been on the internet or read the news at all in the past two months, there’s basically no way you could have missed the ALS Ice Bucket Challenge. It’s a viral social media phenomenon that involves a person dumping a bucket of ice water on their head to promote awareness of amyotrophic lateral sclerosis, or ALS. Also known as Lou Gehrig’s disease, ALS is a neurodegenerative disorder that results in difficulty speaking, swallowing, and breathing. ALS is an extremely serious disease – the average rate of survival from onset to death is only three to four years and consequently ALS is 100 percent fatal.

There appears to be some debate over the exact origins of the ALS Ice Bucket Challenge, but in general here’s how it works: a person is nominated and, within 24 hours, that person is supposed to record a video of themselves pouring a bucket of ice water over their own head. That person then posts the video on social media and nominates several additional people to keep the challenge expanding.

Whether participants choose to donate to the cause, perform the challenge, or do both seems to vary. But what is clear is that the ALS Ice Bucket Challenge has been phenomenally successful in raising funds for the ALS Association. Between July 29 and August 12 the ALS Association received an astonishing $4 million in donations, compared to just $1.12 million during the same period last year. And, according to the most recent numbers, fundraising from the challenge is up to $110 million and probably still growing. There have also been more than 700 thousand new donors this year. If even a fraction of those donors give again in the future it will hugely benefit ALS fundraising.

Even though the specific act of dumping a bucket of cold water on your head may do little to raise awareness of a very serious disease, the fact that so many people have done the challenge does help raise awareness. I’d say at least 10 or 20 of my personal Facebook friends have already done the challenge. And from our own friends and family members the viral sensation has expanded rapidly to include celebrities, musicians, athletes, and even politicians (Oprah Winfrey, Jimmy Fallon, Justin Beiber, Taylor Swift, Leonardo DiCaprio, George W. Bush, Bill Gates, Lady Gaga, Gwen Stafani, LeBron James, Cindy Crawford, Weird Al, Matt Lauer, the full cast of The Tonight Show…the list goes on and on and on). While the monetary donations are indeed incredible, the visibility that the disease is getting as a result of the challenge may be even more valuable. People who have never heard of ALS are now not only interested in donating towards research but also have greater empathy and understanding of the individuals who live daily with this terrible disease.

Given that everybody views things from their own, personal perspective, I find myself wondering what the arthritis community might be able to learn from the ALS Ice Bucket Challenge? But first I want to make it clear that I am in no way comparing these two diseases. And I’m honestly not trying to take anything away from the success of the challenge in promoting funds and awareness for people living with ALS – I think that is completely fantastic. But I have to admit that it does make me wonder.

For example, if any one of the celebrities on the list above talked about supporting people with autoimmune arthritis on their social media platform, what might it do for our fundraising and awareness efforts? I think it could be quite influential, but how would we ever get a celebrity interested in the first place without a personal link? What was it about this donor-focused viral campaign that resonated so well with so many people? How did this particular challenge encourage so many people with no personal link to ALS to get involved?

I don’t think this type of viral challenge campaign can necessarily be re-created, at least not anytime soon, but can we still learn something from it? Because, despite a multitude of criticism, there’s no doubting that the ALS Ice Bucket Challenge was ultimately a success. And wouldn’t it be amazing if we could figure out how to similarly increase funds and understanding for people living with arthritis?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Amy
    5 years ago

    To learn more about how and why things go viral, I would suggest reading Malcolm Gladwell’s “Tipping Point”. It’s well researched, well written, and insightful. Basically, the ALS Ice Bucket Challenge was a fluke that no one could have predicted. I agree that we need new ideas on spreading awareness and fundraising, but I personally thing we should not look to tweet the ice bucket challenge. Rather we should look to create an original idea with more of a lasting presence. What do most arthritis patients need help with, and can we create a program that involves others by helping them as well?

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Amy ~ I totally agree that the challenge was a rare event/fluke that can probably not be created. But I still think there might be something we can learn from it. Something about this particular challenge made people with no connection to ALS interested in participating, and I think that is valuable! But I also think you are right that we need more brainstorming, because a lasting presence would certainly be more useful in the long run.

  • Kelly Mack moderator
    5 years ago

    Thanks for bringing this up Mariah! I was wondering the same thing. My husband was contemplating creating the “warm water challenge” because cold is so painful for people with RA like us. I liked his idea of turning the concept around to highlight the experience of people with RA and the effects of temperature on our joints. Maybe someone has other ideas for raising awareness. Would love to brainstorm!

  • Helen Opczynski
    5 years ago

    I’m very familiar with the ALS Ice Bucket Challenge that was the craze a month or so ago. 3 of my sisters were nominated, with 2 of them actually doing the ice water over their heads the other one opting to make the donation to charity of her choice. I remember actually feeling left out I wasn’t nominated. My twin sister told me you wouldn’t have handled it well because of the freezing cold water. I STILL FELT LEFT OUT! Not an uncommon feeling as I have had JRA since age 8. This challenge was very personal to me as I had a friend who passed away from ALS almost one year ago, after suffering with it for 7-8 years. He would have been 46 a couple weeks ago.

    I’ll be 45 in a month or so and agree with needing to brainstorm on raising awareness for RA other than walking. Until recently, I could barely walk at all without extreme pain in my ankles. If I do walk considerably, it is almost a guarantee I’ll be using a cane at the end of the day to get around. With the loss of weight I had put on the last couple years, it is better but I do still have to limit some activity. I could go on and on as I have almost a lifetime of experiences which I’m excited to hopefully share with this community.

    Good day to all! 🙂

  • Mariah Z. Leach moderator author
    5 years ago

    Kelly – I think this is certainly a topic that requires more brainstorming!! It goes hand in hand with the issue of why do we walk for arthritis when it is often hard for people with arthritis to walk? Sometimes I think we really need to re-think/re-vamp our fundraising and advocacy methods!

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