The ALS Ice bucket challenge has been hot this summer, but if the number of videos on my Facebook page is any indication, it looks like the social media phenomenon is starting to... cool off. Between July 29th and August 27th, the ALSA has received $94.3 million in donations, or about 35 times as much as the same period last year. In fact that figure is about 4 times as much as the ALSA raised last year.
The goal of the challenge besides raising money for the ALSA organization was to raise awareness about the motor neuron disease. ALS also known as Charcot disease or Lou Gehrig's disease falls into a broad category of neurodegenerative disorders that also includes Huntington's Disease, Alzheimer's Disease and Parkinson's Disease. The degeneration of both upper and lower motor motor neurons leads to at first muscle weakness and atrophy which very quickly progresses to complete loss of all voluntary and eventually involuntary motor control. 65% of those diagnosed with ALS will not live longer than 5 years. The ALS ice bucket challenge has been interesting for the attention it has brought to a "orphan disease" and ubiquity of participation from common folk and celebrities alike. However, besides raising money for the ALSA and raising awareness about ALS, this phenomenon has brought up a number of interesting broader issues, including what does "raising awareness" actually accomplish, how should we think about research/charitable giving/what happens in these windfall moments for charities, and finally what role can/will social media play in social movements.
In my experience in community engagement and helping start engagement projects, one of the first goals of every project is to raise awareness. But raising awareness is one of the most nebulous, amorphous goals one can set out to accomplish. How do you measure awareness and at what points in time do you measure it? With the ALS ICB we can measure raised awareness through number of hashtags, videos and dollars given. But are we only going to count those things while the challenge is front page news? Has a large increase in donations or tweets or videos over a month accomplished your goal of awareness? What if we look at the number of donations in six months, in 11 months?
I'm sure with a social media phenomenon this large we'll see a number of news stories that revisit it late next summer and maybe if the ALSA plays their cards right, with the right social media negotiation they can potentially turn the ICB into an annual end of summer event, a la the Movember/No shave November prostate cancer fundraiser. If the ALSA and ICB really hits the jackpot, they may even enter the realm of the Susan G Komen Pink Ribbon campaign. In 30 years since its inception, the Pink Ribbon campaign for Breast Cancer has become one of the most successful and popular charities with over $400 million in annual earnings and over 200 corporate partners (including the NFL who devotes the month of October to Brest Cancer Awareness despite their own public health crisis, traumatic brain injury (I'll save this for another post), and apparent lack of concern for women). It will be interesting to see how the ALSA handles the windfall and what they can do with their new war chest of funds in order to sustain public awareness.
Recently I've seen an infographic posted on-line comparing funding and deaths of various diseases which people are using as a critique of donating to particular diseases. I've also read blog posts and editorials (also here) where people critique giving money to one charity in lieu of another because it either 1) doesn't directly help particular individuals or 2) is "wasted" on research. I'm glad to see a social media phenomenon actually making people think about issues (what did planking, owling, icing, or Tebowing make you think about). How do charities actually spend their money, what effect does each dollar spent actually have on research, awareness or other goals of the charity? There are a number of different charity watchdog organizations that keep track of how charities actually spend their money and should be one of your first stops before handing over a dollar to any organization. I've also been interested in the posts of others who will refuse to donate to the ALSA because of what the research dollars go to fund. While I do not agree with the critiques (see this response), people taking the time to investigate the what and how of a challenge before jumping on the bandwagon is encouraging.
Some people that may have stopped to think about what they were doing before jumping on the bandwagon were the politicians who were happy to take money out of the NIH's pockets and then pour iced water on their heads for the publicity. Although the NIH budget was doubled in 1998, it has declined by 25% over the last decade with the number of researchers funded by RO1s on a trend downwards. Its quite amazing when social media is used for good, but I wonder to what extent social proofing (Sharif, 1935; Figure 1) can actually be leveraged to do good. A number of commentators, or maybe they're critics, often point to social media causes (e.g., dumping water on your head, posting a picture/video, changing your profile photo, or wearing bracelets or certain colored clothes) as examples of slacktivism at best, or narcissistic self-promotion at worst. Perhaps these minimal efforts displays may serve as a gateway to more engaged and more meaningful participation later. Its great to see something that started so small to raise discussion on a number of related and important issues, but now the question is, what will actually come from these discussions.
Sherif, M. (1935). A study of some social factors in perception. Archives of Psychology, 27(187), 1-60.
The goal of the challenge besides raising money for the ALSA organization was to raise awareness about the motor neuron disease. ALS also known as Charcot disease or Lou Gehrig's disease falls into a broad category of neurodegenerative disorders that also includes Huntington's Disease, Alzheimer's Disease and Parkinson's Disease. The degeneration of both upper and lower motor motor neurons leads to at first muscle weakness and atrophy which very quickly progresses to complete loss of all voluntary and eventually involuntary motor control. 65% of those diagnosed with ALS will not live longer than 5 years. The ALS ice bucket challenge has been interesting for the attention it has brought to a "orphan disease" and ubiquity of participation from common folk and celebrities alike. However, besides raising money for the ALSA and raising awareness about ALS, this phenomenon has brought up a number of interesting broader issues, including what does "raising awareness" actually accomplish, how should we think about research/charitable giving/what happens in these windfall moments for charities, and finally what role can/will social media play in social movements.
In my experience in community engagement and helping start engagement projects, one of the first goals of every project is to raise awareness. But raising awareness is one of the most nebulous, amorphous goals one can set out to accomplish. How do you measure awareness and at what points in time do you measure it? With the ALS ICB we can measure raised awareness through number of hashtags, videos and dollars given. But are we only going to count those things while the challenge is front page news? Has a large increase in donations or tweets or videos over a month accomplished your goal of awareness? What if we look at the number of donations in six months, in 11 months?
I'm sure with a social media phenomenon this large we'll see a number of news stories that revisit it late next summer and maybe if the ALSA plays their cards right, with the right social media negotiation they can potentially turn the ICB into an annual end of summer event, a la the Movember/No shave November prostate cancer fundraiser. If the ALSA and ICB really hits the jackpot, they may even enter the realm of the Susan G Komen Pink Ribbon campaign. In 30 years since its inception, the Pink Ribbon campaign for Breast Cancer has become one of the most successful and popular charities with over $400 million in annual earnings and over 200 corporate partners (including the NFL who devotes the month of October to Brest Cancer Awareness despite their own public health crisis, traumatic brain injury (I'll save this for another post), and apparent lack of concern for women). It will be interesting to see how the ALSA handles the windfall and what they can do with their new war chest of funds in order to sustain public awareness.
Recently I've seen an infographic posted on-line comparing funding and deaths of various diseases which people are using as a critique of donating to particular diseases. I've also read blog posts and editorials (also here) where people critique giving money to one charity in lieu of another because it either 1) doesn't directly help particular individuals or 2) is "wasted" on research. I'm glad to see a social media phenomenon actually making people think about issues (what did planking, owling, icing, or Tebowing make you think about). How do charities actually spend their money, what effect does each dollar spent actually have on research, awareness or other goals of the charity? There are a number of different charity watchdog organizations that keep track of how charities actually spend their money and should be one of your first stops before handing over a dollar to any organization. I've also been interested in the posts of others who will refuse to donate to the ALSA because of what the research dollars go to fund. While I do not agree with the critiques (see this response), people taking the time to investigate the what and how of a challenge before jumping on the bandwagon is encouraging.
Some people that may have stopped to think about what they were doing before jumping on the bandwagon were the politicians who were happy to take money out of the NIH's pockets and then pour iced water on their heads for the publicity. Although the NIH budget was doubled in 1998, it has declined by 25% over the last decade with the number of researchers funded by RO1s on a trend downwards. Its quite amazing when social media is used for good, but I wonder to what extent social proofing (Sharif, 1935; Figure 1) can actually be leveraged to do good. A number of commentators, or maybe they're critics, often point to social media causes (e.g., dumping water on your head, posting a picture/video, changing your profile photo, or wearing bracelets or certain colored clothes) as examples of slacktivism at best, or narcissistic self-promotion at worst. Perhaps these minimal efforts displays may serve as a gateway to more engaged and more meaningful participation later. Its great to see something that started so small to raise discussion on a number of related and important issues, but now the question is, what will actually come from these discussions.
Figure 1. Social Proofing. Note: Substitute ice bucket challenge for line.
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