Motor Neurone Disease: More than just a bucket of ice

Recently the fluoro colour block campaigns were not the only thing flooding Facebook newsfeeds – so were videos of your friends or celebrities tipping buckets of ice and water over their heads. However the Ice Bucket Challenge is about more than just a bucket of ice – it’s about bringing into the public focus something which isn’t normally talked about.

The Ice Bucket Challenge is a social media campaign aiming to raise awareness and funds for Amyotrophic Lateral Sclerosis (ALS), better known as Motor Neurone Disease (MND) in Australia. MND is a progressive, terminal neurodegenerative disease, caused by the death of nerve cells that control muscle action. This leads to muscle weakness and degeneration, difficulty with speech, swallowing or breathing, and in later stages, paralysis.

The challenge involves tipping a bucket of ice and water over your head, then nominating three others to do the same or make a donation to an MND organisation. Since the beginning of the month, the challenge has gone global and viral, with videos posted by celebrities from Bill Gates to Benedict Cumberbatch.

Though the challenge has received much attention, as an awareness campaign the Ice Bucket Challenge itself does not convey the difficulties faced each day by those living with MND and their family and friends. Awareness comes from talking about the disease and the fears and struggles of those affected by it.

Anthony Carbajal, a 26 year old American recently diagnosed with the ALS, posted a video of the challenge, then described the fear he feels as the disease progresses; his hands are starting to atrophy and he struggles do simple tasks like buttoning his shirt. ‘ALS is so, so fucking scary,’ Carbajal said. ‘That’s probably why nobody talks about it. No one wants to see a depressing person that’s dying.’

In Australia, it is estimated that two people are diagnosed and two people die from MND each day; 1900 people live with the disease with an average life expectancy of 27 months from the time of diagnosis. There is no known cure or effective treatment.

Prior to the campaign, these things were not commonly known or talked about publicly. The challenge is successful in that it brings MND into the public focus, creating an environment in social and conventional media for information and stories, such as Carbajal’s, to be told and listened to.

‘This is the first successful advocacy we’ve ever really had,’ said Carbajal. ‘You have no idea how every single challenge lifts […] every single ALS patient’s spirits.’

Over the past month, many people at ANU have taken the challenge, including the ANUSA ticket Fetch. They were inspired by their candidate, Ben Kremer, whose grandmother passed away from MND in 2013. He said, ‘a year ago, if I told someone that my grandmother had ALS, I would be immediately questioned by them about what the disease was.’

He described the impact of the MND as ‘extraordinarily vicious and rapid’. He believes that the campaign has brought the disease ‘to the forefront of social discussion’, but it needs to include ‘discussion about the disease itself and its effects not only on sufferers but on their friends and families.’

The challenge aimed not only to promote awareness of MND but also to raise money for MND organisations. Carbajal stated that ALS patients are ‘not profitable’ and there is little incentive for pharmaceutical companies to invest in the costly process of clinical trials for treatments.

As of August 26th, donations to the American ALS Association reached USD$88.5 million; MND Australia has received $500 000, over one hundred times the amount the organisation normally receives at this time of year. Donations go towards researching the causes and treatments of the disease as well as advocacy for disability support and services, care and support for carers.

Kremer described the amount of money raised so far as ‘disappointing’. He said, ‘the campaign needs to encourage people to donate what they can to fundamental research which will one day provide a cure for ALS.’ Presidential candidate Oscar Morgain donated $200 to MND Australia on behalf of Fetch.

Kremer sees the main aims of the campaign as to raise awareness and to raise funds. ‘To be part of a team that was able to achieve, to any extent, these two things makes me extremely proud,’ he said.

Paul Cooper, from the Research School of Biology, took the challenge in the science courtyard. Cooper lectures about muscles and nerves in BIOL1008 (Human Biology) and hoped to prompt students to think about what happens when nervous tissue slowly deteriorates and how that affects muscles. His challenge raised $150 in gold coin donations.

Regarding the campaign’s lasting impact, he commented, ‘although this may just be a spike, hopefully the long term effect will be continued funding for understanding how this disease occurs as well as supporting the families and victims of the disease.’

You can find out more and donate at the MND Australia website: https://www.mndaust.asn.au/