Striking out ALS with the #IceBucketChallenge

This summer, many people became aware of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, as their Facebook and Youtube newsfeeds were filled with videos of the Ice Bucket Challenge. The premise of the challenge was simple and fun: Dump a bucket of ice-cold water on your head, and nominate three of your friends to do the same. If they fail to comply within 24 hours, they must donate $100 to the ALS Association. 

As the movement caught traction, celebrities including Katy Perry, Tom Cruise, Bill Gates and Homer Simpson posted their own versions of the challenge, and encouraged others to do the same. Now, the ALS Association has announced that the Ice Bucket Challenge has helped to gather over $100 million from three million people to help fight ALS. The success of this campaign can be seen in the difference in donations from 2013, when the association only gathered $2.5 million total. 

But as summer winds down and so does the money, the ALS Association (and the Science & Technology Section) would like all of you to remember the real lesson to be gleaned from the Ice Bucket Challenge. Although the hilarious videos often stole the show, the true purpose of the challenge was to raise awareness of ALS, an illness that takes the lives of about 5000 Americans every year. 

ALS is a neurodegenerative disease that causes muscle weakness and atrophy while leaving cognitive and sensory functions healthy in most cases. Early symptoms include difficulty speaking, swallowing and breathing. In the disease’s final stages, patients lose control of most voluntary muscles, and they ultimately die due to respiratory failure. Only half of all patients survive longer than three years after initial symptoms. 20 percent will survive longer than five years, and only 10 percent will survive more than 10.

There are no effective treatments for ALS — or in fact, any neurodegenerative disease — because the disease mechanism has not been identified, and drugs are designed to target specific disease mechanisms. Also, ALS and other neurodegenerative diseases receive minimal attention from biotechnology and pharmaceutical companies due to their sheer complexity and smaller patient pool, especially when compared to more lucrative diseases such as cancer. 

For this reason, the donations generated by the Ice Bucket Challenge could not have come at a better time. Most of the research on ALS is currently funded by private donors, and the influx of money could help fund research about the relevance of the more than 35 gene mutations that have been linked to ALS. In addition, while approximately 10 percent of ALS cases have been attributed to genetic causes, the cause of ALS in the remaining cases are unknown. Many potential sources of ALS, including chemical exposure, military service, drug use and physical trauma, have been researched but studies have not produced consistent findings.