Paying dividends

The ALS Ice Bucket Challenge, a social media trend all the rage two years ago that involved participants pouring a bucket of ice water over their heads on video, may have seemed a bit silly at the time. Some of the most pessimistic even criticized the activity as “slactivism”, or lamented the waste of water the challenge entailed. Two years later, however, scientists believe that they have pinpointed the gene responsible for ALS, and it is in large part thanks to the funding and awareness raised by social media activists around the world.

The campaign, which saw participation from over 17 million people, raised more than $115 million for the ALS Association, a million of which went to support Project MinE at the University of Massachusetts Medical School.


It was here that the magic happened, as researchers were able to identify a gene called NEK1 as the culprit behind the deadly degenerative disease. By understanding exactly which gene is responsible, scientists can better focus their efforts on gene therapy to help combat the illness.

The funding was used in large part to help the lab procure much needed samples of the ALS DNA. As Dr. Lucie Bruijin, Chief Scientist at the ALS Association, explained, "the ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE's work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result." The samples were collected from researchers in 11 countries, studying over 1,000 families and 13,000 individuals who displayed the disease.



This is not the first breakthrough made thanks to the increased funding from the Ice Bucket Challenge either. Last summer, researchers at Johns Hopkins used their funding to identify the TDP-43 protein, which they now believe may be an important marker for ALS. This protein has been seen to accumulate in unusually high numbers in individuals with the disease.

ALS, also known as Lou Gehrig’s disease, is a degenerative disease that attacks the brain and spinal cord of those afflicted. In time, the patient gradually loses control of voluntary muscles, and in time leads to paralysis and death. The terrifying illness sees almost 5,000 new cases appear in the United States each year, but despite this it is still not well understood. According to the Mayo Clinic, genetics plays a role in roughly 5-10% of the cases seen, but in the vast majority of instances, the causes are not well understood. Hopefully, with continued funding and donations, scientists will continue to take steps toward finding the answer, and one day even finding a cure. #News