Amyotrophic lateral sclerosis – also known as ALS or Lou Gehrig’s disease – is a motor neuron disease that causes dysfunction in the nerves that control muscle movement.  There is currently no cure for ALS, although some of the symptoms can be managed with medication in the short term. Most people who receive a diagnosis of ALS will live from 3-5 years after experiencing their first symptoms, but around 10% will live for 10 years or longer.

The onset of ALS usually occurs when a person is in their late 50s or early 60s, but some individuals can start to exhibit symptoms and even receive a diagnosis much earlier. In the early stages, the symptoms may not be very visible, according to ALStreatment.com, but over time the disease will affect all of the body’s voluntary muscle movements. In time, the inability to breathe unsupported can also lead to respiratory failure and death.

The ALS Ice Bucket Challenge

Back in the summer months of 2014, the ‘ALS Ice Bucket Challenge’ went viral on social media and saw millions of people drenching themselves with a cold bucket of water.  The campaign was created to help raise awareness of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, after the famous American baseball player who suffered from the condition.

To complete the challenge, people filmed themselves being doused in cold water, before going on to nominate two friends to do the same. Everyone one who took part was encouraged to make a donation to the Amyotrophic Lateral Sclerosis Association. During the campaign, more than 17 million people posted videos online, including big names such as Bill Gates and former U.S President George W. Bush, as well as host of other celebrities including Dwayne Johnson, Will Smith, Vin Diesel, Oprah Winfrey and Lady Gaga.

Over a two year period, the Ice Bucket Challenge raised over $115 million for the ALS Association. While 67 percent of the funds raised were designated to research, another 20 percent was used to support patient and community services for ALS sufferers.

5 Years on – What we have learned

By far the longest reaching legacy of the Ice Bucket Challenge was the identification of a new gene, NEK1, that can contributes to the disease. This breakthrough was achieved using funds raised by the challenge itself.

Funds were also used to create new technology to help patients with ALS communicate with the world, and also facilitated further research into TDP-43, which is believed could slow or even eventually halt the progress of the disease.

Another huge part of the success of the Ice Bucket Challenge was the way in which it was able to harness the power of social media to help spread awareness of ALS and encourage millions of people to give money to improve the lives of those with the disease.

As a charitable campaign, it outperformed virtually every other viral promotion of this kind and set a new standard for internet fundraising.

It worked so well, because:

It identified the objective from the outset – the objective of the challenge was simple and clear – be filmed pouring a bucket of water over your head, share it on your social media page and invite your friends to do the same. Participants were then encouraged to donate money if they could.

The timescale was immediate – people very quickly get bored if they have to wait to see results.  Those nominated to do the ALS Ice Bucket Challenge were only given 24 hours to do so.

It multiplied quickly – by asking participants to nominate at least two more people to take part in the challenge, it was easy to multiply the number of people involved. This in turn, automatically increased exposure to the cause.

It was entertaining – watching people tip water over their head was funny. It wasn’t dangerous, nor was it difficult to set up.  It could be filmed in virtually any location and it made a great talking point both on and off of social media as people tried to make their video more unique than the ones they had seen before.

It had an authentic back-story – ALS is a scary disease that was not so well known amongst the general population.  The challenge is believed to have initially come from the story of a caring BC Baseball captain who started the challenge to raise money for their colleague Pete Frates, who was diagnosed with the disease at just 27 years old.

The Ice Bucket Challenge not only provided much-needed funds for ongoing research into the causes of ALS and potential cures, but it was also a master class in how to successfully use social media to engage with the public and spread awareness about a disease that was not particularly well known.