Slacktivism Seems To Have Paid Off For ALS (Lou Gehrig's Disease)
Slacktivism gives people the sense they are doing something -- making a difference -- yet with very little effort.
But Nicholas Kristof writes in The New York Times that one example of slacktivism -- the Ice Bucket Challenge to combat deadly Lou Gehrig's Disease (ALS) -- may have worked:
Scientists studying A.L.S. have reported a breakthrough that could lead to therapy, not just for A.L.S. but for other ailments, too. And they say the money raised in the ice bucket challenge was crucial.The breakthrough, published in Science, was summarized thus: "TDP-43 repression of nonconserved cryptic exons is compromised in ALS-FTD."
Got it?
Here's a translation: The research focused on a protein called TDP-43 that in some circumstances is linked to cell death in the brain or spinal cord of patients. The scientists found that inserting a custom-designed protein allowed cells to return to normal.
"That becomes our therapeutic strategy," said Philip Wong, a professor at Johns Hopkins University whose lab conducted the research. He said the research team was now testing gene therapy strategies in mice to see if these can halt A.L.S. symptoms.
If it works in mice, the following step would be to seek to conduct a clinical trial in humans, he said.
The researchers are also hoping the therapy will work for a common cause of mental deterioration, frontotemporal dementia, and for inclusion body myositis, a progressive disease that leads to muscle weakness.
It may also lead to a diagnostic test for Alzheimer's.
For the people who did the Ice Bucket Challenge -- the social media-postable action selfie with the momentarily painful addition of ice water and the annoyance of having to change clothes -- combined the illusion of doing something with the ability to show it off to the world. Stunt volunteerism with minimal effort.
And how much is it really about the cause? From Wikipedia:
Focus on the stunt rather than donations American stunt performer and TV personality Steve-O questioned the campaign, suggesting that celebrities' videos generally forgot to share donation information for ALS charities, and that the initial $15 million in funds was insignificant, given the star power of the celebrities participating. He noted that, of the videos he viewed, only Charlie Sheen and Bill Gates mentioned that the point is to donate money.[119] A similar criticism was made by Jacob Davidson in Time Magazine[120] and by Arielle Pardes in Vice.[91]
Then again, it raised the bucks for the research. A lesson in exploiting ego and social media for fundraisers. (Best to kick it off with a celebrity doing the first bit of slacktivism.)
My favorite useless slacktivism is petition-signing. Few petitions ever do a thing or matter.
Scientists studying A.L.S. have reported a breakthrough that could lead to therapy, not just for A.L.S. but for other ailments, too.
That's great and all, and I like to be hopeful, but I've been doing science long enough to wait until someone else can replicate their results.
I R A Darth Aggie at September 3, 2015 6:44 AM
If someone is donating money, that doesn't strike me as slacktivism. Signing useless petitions and "liking" a page, then not doing anything else, is slacktivism. If you make a video to raise awareness of a cause, then write them a check, you've actually done something. That it's not the same thing that somebody else would have done, or doesn't meet someone else's standards, really doesn't matter.
ahw at September 3, 2015 6:48 AM
A lot of celebrities view lending their image or just speaking about a topic a charitable gift. Since their image is their job there is some truth to it. But personally it just exemplifies the shallow and narcissistic nature of most celebs.
Ben at September 3, 2015 9:30 AM
I'm a bit surprised at your petition comments. I mean, sure many are stupid wastes of time. However, in many places a person needs petition signatures to run for any public office. Also, we shouldn't forget the California ballot initiatives. :)
Shannon at September 3, 2015 10:44 AM
The ALS Foundation was pretty good about riding this horse. They helped the videos go viral, and tracked down people who did it to ask for donations. I think it helped a bit that doing it involved a bit more work than just typing in a hashtag -- people that did it had to get a bag of ice and set up video, and it was obvious to others that they were doing something unpleasant, at least momentarily. Also, I think it helped them that ALS, unlike a lot of other uncommon diseases, still has some public recognition factor because of Lou Gehrig.
Cousin Dave at September 3, 2015 11:14 AM
Yes, petition signing DOES work:
https://www.youtube.com/watch?v=c7uVxHLT-aY
Or ask anyone who signed this one:
https://www.youtube.com/watch?v=DYwY85K1MB0
Whether these videos are real or not; I do think that a lot of people will sign just about any petition!
However, I do suggest that you watch to the end of the second one.
charles at September 3, 2015 12:21 PM
As a service to anyone raising "awareness" I like to pretend to be completely un-aware. Its the least I can do. Are you raising awareness of child obesity? You mean there is a problem with little kids getting fat? I just thought they were cute. Diabetes? What is that? Genetically modified food? Holy shit we got scientists that modify the genes of food. I didn't even know corn wore jeans.
I figure if I can make some one feel like they have raised my awareness I have done my job. Like I said it is the least I can do.
Shtetl G at September 3, 2015 12:27 PM
There was much grousing on my FB feed during the ice bucket challenge about "Slacktivism" and how laaame the challenge was.
I responded to those people with a link to a video of the guy diagnosed with ALS (and whose sister has it) doing the Ice Bucket Challenge. I got unfriended a lot during that time.
sofar at September 3, 2015 12:39 PM
. Ohhh yeaash, petitions reaaaally work.
adambein at September 3, 2015 11:35 PM
The thing is, most people who doused themselves also gave money. it wasn't like posting their bra color something like that, that really accomplishes nothing.
crella at September 4, 2015 5:36 AM
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