Although disabled people make up a large percentage of internet users, it wasn't until 2014 that a social media campaign focusing on a profound disability was used to change the world's view of a life-altering medical condition. The "Ice Bucket Challenge" was a mitigated success that taught many lessons beyond how it feels to have Lou Gehrig's Disease, but it had a purely organic beginning. So organic were its roots that the organization the campaign would fund knew nothing about the social media hashtag and where the funds were originating until several weeks into it.
In the summer of 2014, a social media campaign was launched by a personal challenge to encourage donations for research into Amyotrophic Lateral Sclerosis (ALS), also referred to as "Lou Gehrig's Disease" by the ALS Association:
It can be traced back to a personal event that July. "It was not like traditional health campaigns that were created by official associations, but an activity that went viral on social media at first and was then reorganized by the ALS Association."
The first incidence of the "Ice Bucket Challenge" related to ALS was issued by Chris Kennedy on Twitter to his wife's cousin Jeanette Senerchia, whose husband Anthony has ALS. Chris was hoping to cheer Anthony up, with this tweet, "Thanks @JonBullas. You're up next @KevinAylwin, Jeanette Senerchia and @mattdodson7 #IceBucketChallenge http://youtu.be/WpJCWjs6kYA" on Jul 15, 2014 he had no idea what he had started. He had just made the official first "ALS Ice Bucket Challenge."
After the first challenge was thrown down, it took just a short time to go viral. In an article written in August of 2014 for Time, Alexandra Sifferlin traced the virility of the hashtag #IceBucketChallenge to a man named Pete Frates in Boston who is an active member of the ALS online community. Pete had been challenged by a man named Pat Quinn for whom Pete was a mentor and fellow ALS sufferer.
Pete's extensive network took a hold of the hashtag and it spread like wildfire. "Frates posted his own video on Facebook on July 31, using both the hashtags #StrikeOutALS and #Quinnforthewin—and that's when the campaign really went viral."
During the 8-week viral campaign, the ALS Association, or ALSA received millions in contributions. ALSA's website claims the 2014 Ice Bucket Challenge netted $115 million in donations. ALSA's site also provides a detailed list of where the donations have been allocated.
Not only did the organization gain money for research of this disease that attacks adults from the ages of 40-70, but the challenge got people talking about the disease and searching for more information. The change in the level of awareness about ALS has been significant.
Beyond money and awareness, there was a third effect. The funding went partially towards a development that was announced in 2016 that "identified a new gene associated with the disease, which experts say could lead to new treatment possibilities."
Unfortunately, no other campaign, in fact, absolutely no non-organic social media campaign designed to raise disability awareness in the history of media has ever gone viral. If the Internet is to truly "give voice to those typically denied expression," the disabled are the group that fits the best within that category, but when will social media campaigns represent them as a valued audience?
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