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?

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