Science Outreach: The importance of Getting Involved – The Ice Bucket Challenge

Why would someone take a bucket full of ice cold water and pour it on their heads? As disagreeable and illogical as it seems, millions of people have done it to take part in the Ice Bucket Challenge. This campaign, also known as the ALS Ice Bucket Challenge, started in  mid 2010 to promote awareness for Amyotrophic Lateral Sclerosis (ALS) and encourage donations for ALS-related research. The principle of the challenge is simple: a bucket full of iced-water is poured on your head either by you or someone else. In the good spirit of a challenge, you then nominate at least three other people to take the challenge within 24 hours. Oh, have I forgotten to say that you do all this while being filmed, and the video will  then be uploaded on social media?

While this kind of campaign was already taking place unrelated to a specific disease, the ALS Ice Bucket Challenge went viral in Summer 2014; the initial association with ALS has been ascribed to Pete Frates, diagnosed with the disease in 2012. In July/August 2014, social media platforms were quickly taken over by videos of people (including  celebrities) getting ice showers. Ever since, each August, the ALS Ice Bucket Challenge is revived, albeit with decreasing success compared to 2014.

ALS: causes and prognosis of a motor neuron disease
ALS, also known as motor neuron disease (MND) or Lou Gehrig’s disease, was first described in the early 19th century in some patients with progressive muscular atrophy. However, French neurologist Jean-Martin Charcot made a link between the symptoms and the neurological issues of this disease only in 1874, and coined the term amyotrophic lateral sclerosis. Motor neurons (MNs) are specialised neurons innervating muscles. Through their firing activity they control contractions of voluntary muscles, e.g. muscles involved in movement, respiration and swallowing. In ALS there is a progressive degeneration of MNs, culminating with their death and the consequent inability to contract voluntary muscles. In the long term, this leads to progressive loss of the ability to walk, talk, eat and eventually breathe. ALS is considered an always fatal disease, meaning that it eventually leads to death of the patient in all cases.

ALS is the third most common neurodegenerative disease, with a world-wide prevalence of 4.5 people per 100,000. The causes of ALS include genetic (10% cases) and environmental factors (90% cases). While there are over 20 genes associated with the disease, only about 10% of genetic cases are familial (at least another family member has it). A plethora of environmental factors, including smoking, military service and exposure to lead and several other chemicals, have been proposed as causative agents for ALS. Nevertheless, to date, there is not strong scientific study conclusively linking any of these factors to ALS onset.

The age of onset of the disease usually peaks in the late 50s (or late 40s in familial cases); in the “juvenile ALS”, the age of onset can be as low as 25 or less. Usually, the earlier the onset, the longer is the life expectancy, but there are also specific gene mutations that considerably worsen prognosis in juvenile ALS. Notably, ALS is 20% more common in men than in women, especially in earlier ages. The prognosis of patients is 2-5 years with an average survival time of 3 years, and the progression of the disease highly varies between patients; in 35% of the cases people can live as long as 5-20 years after the diagnosis.

Effects of the ALS Ice Bucket Challenge
A hard fact about ALS is that there is no cure, and medications and support for patients can be very costly. When the ALS Ice Bucket Challenge went viral, it quickly spread throughout the world thanks to social media. Millions of videos have been posted online, including those from celebrities and notable politicians such as Bill Gates, Charlie Sheen and former US president George W. Bush.

The challenge itself doesn't stop at the theatrical act of pouring ice cold water on one’s head. Participants can in fact either participate in the challenge, donate money to ALS research or do both. This world-wide campaign sparked several noteworthy effects.

Awareness about the disease and the conditions of affected patients was considerably raised, despite the fact that many videos from celebrities failed to mention ALS or the aim of the campaign to raise money for ALS research. While, originally, the participants of the challenge were supposed to state the amount of money and/or the association they would donate to in their videos. This raised doubts about the campaign and gave the perception of a visibility race, even more in today’s society where everyone seeks fast recognition and their proverbial “15 minutes” of fame. Nevertheless, the amount of donations sent to ALS associations around the world during the summer of 2014 was greatly boosted, reaching for instance about 200 million USD of donations to the American ALS Association.

The money raised through the campaign has been used in different ways, as an infographic from the American ALS Association shows. Some of the funds have supported research to discover new drugs, including international cooperations. Research leading to the discoveries of new genes involved in ALS has also been funded, as well as research to determine the role of specific environmental factors in the onset of ALS. Furthermore, the money raised has also been used  to support and help ALS patients through patient care in hospitals and through several community services.

These are definitely positive effects of the campaign started in 2014. However, we should not forget the reduced impact of the campaign’s revivals in the following years, which saw a smaller interest from the general public, culminating in significantly lower participation and donations. This is easily associated with the temporary nature of social media interactions, quick appearances in our homepage hoping to be assimilated amongst the variety of information deluging us every day. These visibility-based actions are not aimed to remain and settle in our minds, but rather speak to our instincts, including the subtle need to fit-in which prompts us to participate in such gone-viral campaigns, with the aim of feeling like we belong to something.

Perhaps we should make an effort to remember instead, and act without waiting for the next celebrity to advocate for a cause or without having to show it to the rest of the world. But what we have learnt from the Ice Bucket Challenge should also be a wake-up call to scientists and associations in the world, for a better way to appeal to the sensibilities of  the general public. It is important to educate them about the challenges of diseases, both for patients and research, and the need to constantly support endeavours in the fight against them.

Written by Chiara Galante; Edited by Radhika Menon. Featured Image: NGC/Design

Resources:
Wikipedia
https://en.wikipedia.org/wiki/Ice_Bucket_Challenge

ALS Association
http://www.alsa.org/fight-als/ice-bucket-challenge.html#  (Ice Bucket Challenge)
http://www.alsa.org/fight-als/ice-bucket-challenge-spending.html (Ice Bucket Challenge Report)

The Guardian
https://www.theguardian.com/society/2016/jul/26/ice-bucket-challenge-als-charity-gene-discovery