Raising some actual awareness of ALS

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These past few weeks, social media has been a plethoric ration of #theALSIceBucketChallenge. With celebrities causing an inevitable domino effect on the world-wide web, people from Bill Gates to the average Joe have chosen to pour ice water on themselves to “raise awareness for amyotrophic lateral sclerosis (ALS).” People can donate and/or create a video of themselves completing the Ice Bucket Challenge in support of ALS. 

But is the Ice Bucket Challenge actually helping people understand what ALS, sometimes referred to as Lou Gehrig’s disease, is? Or is it perhaps merely just another temporary social media stint? Sure, people may complete the Ice Bucket Challenge in the comforted sense that they are helping a research charity. It seems that the mass majority of participants are merely creating a video of themselves doing the Ice Bucket Challenge for just the sake of creating a video. But do people actually realize what ALS is through these videos? In other words, where is the “awareness” part to the Ice Bucket Challenge?

ALS is a neurological disease that is rapidly progressive, affecting nerve cells throughout the body. The rationality behind the Ice Bucket Challenge is that the chilling sensation from the ice water causes some of the similar sensations of a person who has ALS.  When the nerve cells are affected,  it leads to the loss of control of voluntary muscles, such as the chest and diaphragm muscles. Most victims of the disease die from respiratory failure. The prognosis of ALS after diagnosis is usually 3-5 years. These are just some of the facts and figures.

Another figure is that one research project of three to five years for a cure to ALS costs approximately $120,000-$140,000. Presently, the ALS campaign has raised over $70 million. Looking at this figure, one may suppose that it does not matter if this campaign is yet another social gimmick as it has raised more than a sufficient sum of money in a rapid amount of time. And at the end of the day, raising money for the cause is the ultimate goal. However, when it comes to the longevity of raising funds for ALS, one social media campaign may not be enough.

If people truly want to continue the efforts in fighting ALS, people should at least have the knowledge of what they are fighting against. No one goes into a battle, without recognizing who they are up against or what their soldiers may endure. The Ice Bucket Challenge is about raising “awareness.” So let us actually raise some awareness on ALS. Thus, allowing people to become cognizant on what the victims of ALS and what their families and friends have to go through.

In addition, people should be aware of the type of research their money is funding. Some, including Pamela Anderson and Grimes, have rejected the Ice Bucket Challenge due to the ALS Association testing on animals. These pieces of information seem to have become lost in this effluence of videos and compilations of the Ice Bucket Challenge’s ever-growing popularity.

The Ice Bucket Challenge should not be used for celebrity propaganda or a series of fail compilations. As the campaign has this prime-time spotlight, the Ice Bucket Challenge should be used to build that essential connection between victims and the public through information. After all, this is what the challenge was supposed to accomplish, bringing awareness to ALS.

For more information or to donate visit: http://www.als.ca/en/donate or http://www.alsa.org/