By Matthew Miller
It is almost as easy to deride social media activists as it is to be one. A click of the mouse enables people to feel like they have joined and furthered a worthy cause. The low effort required is appealing to those who want to be involved in something, but would rather not spend their most valuable resource (time) doing so. This leads to the not always unfounded criticism of those who believe that real change involves physical action more involved than sitting in front of a computer. But, it is the very same ease with which an online activist can press “Like” or “Share” that allows certain causes and messages to be able to garner the massive viewership and recognition that might otherwise go unnoticed by the masses.
On July 27, armchair activists and their detractors could both claim a victory of sorts: an event that utilized both social media and a modicum of physical outdoor exertion to further a worthy cause. On the same Wednesday, the ALS Association reported that the “Ice Bucket Challenge” had led to a significant discovery in the effort to find a cure for ALS. Researchers from Project MinE published a paper reporting that they had found a gene called NEK1 that they believe contributes to the disease. This is significant because of the nature of gene therapy, a nascent but promising new development in science which could prove instrumental in the curing of previously incurable diseases. Homing in on NEK1 could provide the clues necessary to better understand the gene and its variants and lead researchers into the proper avenues required to develop a cure.
According to the ALS Association, Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The first word Amyotrophic derives from Greek, meaning “no (A) muscle (myo) nourishment (trophic). When a muscle is unable to receive nourishment it atrophies, or shrinks. The second word Lateral describes the locations of the muscles affected by the disease. More specifically, these locations are the portions of the spine that send controlling signals to the body’s muscles. The last word is Sclerosis, which means “to harden.” This is what occurs during the degradation of these particular areas of the spine that control the muscles. The discovery of NEK1 should go a long way in helping to develop the solutions necessary to reverse these severely painful, debilitating and deadly effects.
In 2014, the Ice Bucket Challenge became the cause du jour of the summer. It was a case of online activism that actually required participants to involve themselves in a physical activity. Partakers would record themselves verbally accepting the challenge for the ALS Association (ALSA) and then challenging friends to do the same. They would then dump a bucket of ice water over their heads providing viewers with a comical reaction to the invigorating activity whilst making them aware of the deadly disease. The challenge succeeded in raising awareness by providing a worldwide forum for people to be individually recognized as supporting a worthy cause. The requirement to challenge those close to you reinforced the viral aspect of the campaign. Facebook reported 2.4 million videos associated with the cause had been uploaded to its site.
All said, the attention garnered in the summer months of 2014 produced a successful campaign. The ALS Association raised $115 million domestically and $105 million more internationally for a grand total of $225 million. Contributions came in so quickly that the group’s President Barbara Newhouse requested that charity watchdogs suspend their ratings as the association’s cash on hand could negatively affect its standing (Charity Navigator currently gives the ALS Association an overall rating of four stars, the highest rating). ALSA has spent the past two years allocating funds to multiple research efforts in order to attack the problem from different angles.
The disease usually affects those in the 40-70 year old range and the Association estimates that in the United States around 20,000 people are living with the disease at any given time. It is considered almost 100 percent fatal. Five to ten percent of cases are inherited (known as familial ALS), while the remaining majority is considered sporadic. It was discovered in 1869 by French neurologist Jean-Martin Charcot and was made infamous in 1939 by Hall of Fame baseball player Lou Gehrig, for whom the disease obtained its eponymous nickname. Gehrig concluded his celebrated farewell address by saying, “… I might have been given a bad break, but I’ve got an awful lot to live for.” It seems that a good bit of online fun, properly implemented, can provide a good break for those who have been given bad ones.