Social Media and the ALS Ice Bucket Challenge
December 28, 2022
Since social media has evolved, it has also generated and spread a variety of social media trends. While some are recreational and facilitate creativity and community with makeup, fashion, singing, and various hobbies, others such as the Tidepod Challenge, the Cinnamon Challenge, or the Coronavirus Challenge have proven to be questionable and sometimes even dangerous (Patton, 2022; Perry, 2020; Today Show, 2022). However, while social media can be used to promote and advocate for unhealthy or dangerous behaviors, it has also demonstrated to have the capacity to initiate significant and lasting change. For instance, a widely popular trend in 2014 was the Amyotrophic Lateral Sclerosis (ALS) Ice Bucket Challenge. Celebrities, athletes, politicians, and influencers were dumping buckets of ice water on themselves and challenging their friends to do the same to raise awareness and money for ALS medical research. While entertaining for viewers, according to the ALS Association (ALS Association, 2022a), over 17 million people participated in the Ice Bucket Challenge during the summer of 2014 alone. Now, eight years later, it’s been announced that a new drug for combatting ALS was approved by the FDA (Davis, 2022). Not only is this a milestone for those impacted by ALS, but it also illustrates the impact social media can have, as this drug was developed and trialed because of the donations received from the Ice Bucket Challenge.
As the ALS Association explains, ALS is a progressive neurodegenerative disease that affects motor neurons. Motor neurons are responsible for voluntary movement and are located in and operate out of the brain and spinal cord to the muscles of the body. ALS causes these motor neurons to degenerate, and over time those affected may lose their ability to speak, eat, move, and breathe. The ALS Association reports that someone is diagnosed with ALS and someone passes away from ALS every 90 minutes (ALS Association, 2022b). The Centers for Disease Control and Prevention (CDC) reports that patients will live two to five years after symptoms develop and approximately 5,000 new cases of ALS are diagnosed each year (CDC, 2017).
With no determined cause for ALS, research is crucial for a better understanding of the disease and expanding treatment options. The 2014 ALS Ice Bucket Challenge was so impactful that the ALS Association was able to increase its annual funding for worldwide research by 187 percent, spending approximately $90 million on research grants and international work. With approximately $115 million raised from this social media challenge, the researchers who were able to have their grants funded reported a 20 percent increase in their scientific output. Furthermore, because of this increase in funding, societal awareness, and scientific production, the National Institute of Health awarded an additional $415.9 million to ALS researchers (ALS Association, 2019). While this new drug is not a cure, it does slow the effects of this disease, extending ALS patients’ lifespans.
While social media can be used purely for entertainment purposes and sometimes encourages questionable trends and challenges, it also has the potential to benefit society. While the funding received from the ALS Ice Bucket Challenge and the FDA approval of the new drug was a milestone, the ALS Association still has work to do. Those interested in contributing to the ALS Association should consider getting involved as an advocate, acting as a liaison who educates and calls on policymakers to support the policies that are helpful to the ALS Association and ALS patients (ALS Association, 2022c). Additional ways to get involved include participating in a Walk to Defeat ALS, starting a fundraising campaign, or getting in touch with a local ALS chapter (ALS Association, n.d.).
ALS Association. (2019, June 4). Ice Bucket Challenge dramatically accelerated the fight against ALS [Press release]. https://www.als.org/stories-news/ice-bucket-challenge-dramatically-accelerated-fight-against-als
ALS Association. (2022a, September 29). FDA approves first ALS treatment funded by Ice Bucket Challenge [Press release]. https://www.als.org/stories-news/fda-approves-first-als-treatment-funded-ice-bucket-challenge
ALS Association. (2022b, November 11). Understanding ALS. The ALS Association. Retrieved December 3, 2022, from https://www.als.org/understanding-als
ALS Association. (2022c, November 23). ALS advocacy. The ALS Association. Retrieved December 3, 2022, from https://www.als.org/advocacy
ALS Association. (n.d.). Get involved. The ALS Association. Retrieved December 3, 2022, from https://www.als.org/get-involved
CDC. (2017, April 5). Amyotrophic lateral sclerosis. Centers for Disease Control and Prevention. https://www.cdc.gov/als/WhatisALS.html