The ALS ice bucket challenge has taken the social media world by storm and surprised many by how fast and far it has spread. People simply make a video of themselves dumping a bucket of ice water on their heads and then post it on a social media site and challenge others to do the same within 24 hours or make a donation to ALS research (or both).
The stunt, which began early in the summer as a challenge unrelated to amyotrophic lateral sclerosis, has resonated with many people in the dog days of summer and has been helped by many celebrities taking up the challenge. It became linked to ALS when Peter Frates, a 29-year-old man with the disease, took the challenge – albeit by nodding his head to the song "Ice Ice Baby" instead of having ice water dumped on him – and asked others to do the same.
Courtesy Wikimedia Commons/slgckgc/Creative Commons License
The ALS Ice Bucket Challenge has raised money and awareness for the disease.
According to the ALS Association, as of Aug. 19, existing donors and more than 450,000 new donors have contributed $22.9 million since July 29, compared with $1.9 million during the same period last year. The ALS has a four-out-of-four stars rating on Charity Navigator, and an overall score of 90.73 out of 100. Overall, 72% of its expenses are spent on the programs and services it delivers, 11% on administration, and 17% on fundraising.
Some critics have suggested that the stunt promotes click and post activism, keeping people from doing real activism, or is "narcissism masked as altruism," but most people have embraced it as fun for a good cause.
I asked a few Clinical Neurology News editorial advisory board members to weigh in:
• Dr. Richard J. Caselli, professor of neurology at the Mayo Clinic, Scottsdale, Ariz.: "If it is raising money for ALS research, what’s not to like? Not everyone was destined to be a molecular biologist or clinical trialist, and this gives people a way to contribute that seems to be culturally in synch with the ‘social media’ community. ... The ice water is an interesting twist in that it implies that if you turn a blind eye to this cause you should punish yourself, and I suspect many people harbor feelings of at least slight guilt when they feel they are not contributing to worthwhile needs."
Matthew J. Huentelman
• Matthew Huentelman, Ph.D., associate professor of neurogenomics at the Translational Genomics Research Institute, Phoenix: "If a campaign works (and doesn’t harm) then it is hard to argue against. I think that any awareness campaign that actually gets a response from the White House has probably been a useful one. President Obama confirmed he would be donating but not doing the ice bucket thing. ... I suspect that a lot of research foundations are going to be having ‘tough’ conversations at this month’s board meetings as they compare their awareness and fundraising attempts to the simple ALS ice bucket challenge. It just demonstrates to all of us again that social media is relevant for both spreading the word and getting results. There are a few keys from this too: (1) visual "stuff" matters – short video clips is now how the world communicates; (2) challenging your friends/colleagues by name is important, too – it sort of forces a response from them; and (3) celebs are still key to pushing something viral in a truly short period of time."
(While you contemplate taking the ice bucket challenge, you might as well visit Dr. Huentelman’s social media project, MindCrowd, a site leveraging social media to recruit participants into a brain research study.)