Lately, social media sites have been invaded by videos of people upending buckets of icy water over their heads. The goal behind this watery exercise is to raise funds, as well as awareness, for amyotrophic lateral sclerosis (ALS) research. The ALS ice bucket challenge is simple: douse yourself in icy water, record it, post it online—on Facebook or Twitter, for instance—including a message about doing it for ALS research, and donate money to the ALS Association (ALSA) through its donation webpage. In the UK, people can donate to the Motor Neurone Disease Association.
The final step is to nominate several friends to do the same. This chain reaction strategy has generated publicity and money for ALSA. So far, 1.7 million people have donated, raising $79.7m (€60.4m; £48m).
The trend is similar to the “no makeup selfie” campaign, where girls and women were encouraged to post pictures of themselves without makeup—and men with makeup—online under the hashtag #nomakeupselfie, which raised more than £8m (€10m; $13.2m) for Cancer Research UK within six days. The extra money was enough to cover the costs of 10 clinical trials.
The concept has not escaped disapproval. Critics say that posting bare faced selfies or videos of yourself being soaked in water have little to do with cancer or ALS, and that these stunts undermine the plight of people with the disease. However, the aim of the campaigns is to generate money, which can be pumped into research efforts. As short term fundraising exercises, these have clearly been successful. There is now an incentive to donate, even if it is only narcissism: announcing to the world that you have joined the fight against a disease. Nevertheless, it has created awareness about ALS, a relatively lesser known disease.
ALS is a neurological disease that causes nerve cells to gradually break down and die, leading to muscle weakness and impaired physical function. Eventually, ALS can affect your ability to control the muscles needed to move, speak, eat, and breathe. It cannot be cured and eventually leads to death.
Population based studies have estimated that the incidence of ALS in Europe is 2.16 for every 100 000 person years. Although ALS affects people worldwide, the global incidence of this disease is not yet known, but the overall population based lifetime risk of ALS is 1:400 for women and 1:350 for men. Estimates were available for the number of Americans with ALS, which is about 30 000. The small number of patients who have the disease means that drug companies have little incentive to pour funds into research, as is so often the case with rare diseases.
Its relative rarity means that there is debate over whether ALS is the worthiest cause to donate to; especially when other health emergencies, such as Ebola or HIV, are wreaking so much havoc—and often in resource poor countries. ALS’s rarity, however, does nothing to alleviate the suffering of patients, so it is commendable that the condition is for once at the forefront.
The psychological impact on sufferers of the disease being campaigned for is uncertain; it is possible that they may feel their disease is being trivialised in some instances, or they could be overwhelmingly grateful for the support. Anthony Carbajal, who has ALS, says in his ice bucket challenge: “This is the first successful advocacy we’ve ever had . . . you have no idea how every ice bucket challenge lifts my spirits, lifts every single ALS patient’s spirits, you are really truly making a difference.”
In our digital age, a fundraising effort going viral online is a novel and efficient method for medical organisations to amass money quickly, although I think it will eventually lose steam, and both the spotlight and the level of donations seem unlikely to continue in the long term.
Lavanya Malhotra has just finished her first year of medicine at the University of Cambridge.
Competing interests: I, Lavanya Malhotra, declare that I have read and understood the BMJ policy on declaration of interests and I have no relevant interests to declare.