Just one year ago, Facebook feeds, Twitter feeds, even Tumblr, were awash with videos and photos of people pouring buckets of ice water over their heads, all in the name of medical research. Well that was the theory, most people did it because their friends were doing it and it was the hit social media issue of the day.
At the time, the Ice Bucket Challenge had become the viral campaign everyone was talking about, an online effort to raise awareness and funds for amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. The movement only gained further notoriety when celebrities aplenty jumped in on the act. The movement attracted criticism of social media “slacktivism”, a convenient way for people to act like they’re making a difference without achieving anything at all. This was seen just two years prior with the Kony 2012 movement, which rather fizzled out after a dramatic video circled the internet for a few days.
But one year and more than $220 million in donations later, that “slacktivism” has produced real results. Scientists at Johns Hopkins are claiming a major breakthrough in ALS research and are partly crediting the success to the massive influx of public interest.
“Without it, we wouldn’t have been able to come out with the studies as quickly as we did,” said Philip Wong, a professor at Johns Hopkins who led the research team. “The funding from the ice bucket is just a component of the whole, in part, it facilitated our effort.”
Wong and his team had been studying ALS for about a decade, but as Jonathan Ling, another researcher at Johns Hopkins, said in an “Ask Me Anything” thread on Reddit, the millions of dollars brought into the field has given researchers the financial stability to pursue “high risk, high reward” experiments. The funding which has entered the field can do nothing but good and according to Wong, “The money came at a critical time when we needed it. Because of the massive influx of money, and more than a little public pressure, the team at Johns Hopkins took part in the ALS Ice Bucket challenge as seen in the video below.
The breakthrough in research unravels the mystery about a protein called TDP-43. About a decade ago, researchers discovered that ALS patients often had clumps of the protein outside the nuclei of their brain cells, but it was unknown if this was an effect of the disease or potentially a cause of the crippling ailment.
In one of the studies, which could be funded due to the increase in available capital, of the protein in mice cells, published last week in the journal Science, the Johns Hopkins scientists detail how TDP-43, which is supposed to decode DNA, break down and become “sticky.” They are unable to properly read the DNA and the cell dies within a few days of the infection taking root.
When the researchers inserted a special protein designed to mimic TDP-43 into the neurons, the cells came back to life and were able to return to normalcy and functionality. That’s sparked fervent interest that the treatment could possibly be used to slow down or even halt the disease in its warpath.
It’s a big step for the 15,000 Americans living with ALS, a disease which currently has no cure, and usually ends up killing people two to five years after they are diagnosed.
Wong said the next step would be to conduct more experiments to see if mimicking the protein could be used as a therapeutic model to treat mice as a whole organism, rather than just cells. In other words they want to see if this can work in mice instead of in a Petri dish. If that goes well, it would move into the clinical trials on human subjects.
And with such a large amount of money just now being allocated to the research community, those trials are already funded, and funded well.
Despite the enormous attention brought to it on social media, ALS is a relatively rare disease. Somewhere around 7,000 Americans are killed by the disease year, according to the Centres for Disease Control, about two in every 100,000 deaths. The disease is also estimated to effect around 450,000 people globally.
That’s partly why it was so surprising to see hundreds of celebrities and politicians get caught up, and rather damp, for the cause. The campaign helped the ALS Association collect $115 million last year, a 4,100% increase in fundraising from the $2.8 million collected in 2013.
Critics have argued that such large attention to the single cause of ALS leads to “funding cannibalism”, that money given to the ALS cause is diverting resources to other research areas, perhaps for a disease that impacts more people.
Wong argued, though, that the money isn’t coming from a fixed pile, “In other diseases, you can take similar strategies to bring about awareness and have people come in to support it,” he said. “This helps to drive other foundations to promote their cause. It’s doing more good than bad.”
The researchers also believe that understanding these proteins could have much broader impact beyond the ALS community. Wong said other diseases, such as a disease most of us will have come into contact with Alzheimer’s disease, muscular dystrophy, and inclusion body myositis, may also benefit from the pioneering treatment.
“The lesson that we learned can be applied to other human diseases,” Wong said. “There’s a much greater number of people affected by this.”
Whilst “slacktivism” does give a false sense of helping a cause to the vast majority of people, there are more than a few of that number who when they are made aware of a cause can and will fight for it. If but a few people see these campaigns and contribute because of them who are we to say that social media attention is bad?