Amytrophic Lateral Sclerosis, widely known as ALS, is a neurodegenerative disease that causes the deterioration of nerve cells and the consequential loss of function in muscles controlled by these cells. Life expectancy after diagnosis is about three to four years, and a cure has yet to be found. Though it is such a lethal disease, little funding goes into researching ALS treatment due to the rarity of patients. A cure for ALS may not save millions of lives each year, but if even one life can be saved, it is worth being found. Enter Pete Frates.
In 2012, Frates was diagnosed with ALS, and his life was changed forever. Though the disease picked away at his brain, his heart (in a non-physical way) was left untouched. Immediately following his diagnosis, Frates began campaigning and fundraising for ALS awareness and research. In 2014, Pat Quinn, a friend of Frates, was also diagnosed with ALS; soon, the two joined forces, and the results went viral.
Summer months are always the hottest, and what better way to cool down than to dump a bucket full of ice water on your head? Frates and Quinn surely couldn’t find one, and so the ALS Ice Bucket Challenge was born. Throughout July and August of 2014, over 17 million participants drenched themselves in their own mini Arctic Ocean, and nominated friends and family to do the same. For most people, the ALS Ice Bucket Challenge was simply a fun thing to take part in on social media while spreading awareness for the disease. However, others that “failed” the challenge (did not complete it within 24 hours of their nomination) actually held true to its terms and made a donation to an ALS organization. In fact, so many people made donations (having not completed the challenge or simply wishing to help a good cause) that the ALS Association alone received upwards of $100 million in the span of one month.
As trends do, the ALS Ice Bucket Challenge slowly faded away, taking a backseat to new social media crazes like selfies, TBTs, memes, etc. Two years later, no one was really thinking about that hot summer day that quickly became very, very cold (all for the temporary enjoyment of our followers, of course). However, by July 2016, the Ice Bucket Challenge had once again made headlines.
Throughout the period of time when ALS had disappeared from everyone’s daily conversation topics, millions of dollars were poured into ALS research that would hopefully find a treatment superior to the existing one that merely delays inevitable death. A portion of that funded the international Project MinE, which worked to sequence the genomes of thousands of ALS patients, an arduous, costly, and yet very helpful process. Scientists working on the project recently discovered a new gene, NEK1. Further more, they noticed that a significant percentage of the sequenced ALS patients’ samples contained variants on this neuron-associated gene. The discovery of NEK1 and these variants has created a potential target for new ALS treatment using the up-and-coming gene therapy process.
Now, this may not be the much-needed, highly awaited “breakthrough” as labeled by some news reports, but it is certainly a step in the right direction. If we can take anything away from this story, science and medicine aside, it should be the acknowledgement of the power of social media. Living in a time when there is a constant argument between generations over the usage of new technology, it is nice to see that a “trend” often labeled as dumb and pointless by others, actually did some good in the world. :)
