The ALS Ice Bucket Challenge has gone from awareness-raising campaign to a social phenomenon in a matter of days.
I was nominated by my friend Rosie. I’m currently in California, where the state is facing the most severe drought on record, so I’m electing not to waste the water.
But I have an alternate challenge that I will nominate you all to engage in: learning about some of the people who have lived with, and campaigned about, ALS/MND without the aid of a bucket of ice.
These viral campaigns are great for short-term awareness raising purposes, but are you engaging in the issue for longer than a 5-second bucket-dump?
ALS (aka Lou Gehrig’s disease) is known as MND (Motor Neurone Disease) in the UK. According to Wikipedia:
It is characterised by muscle spasticity, rapidly progressive weakness due to muscle atrophy, and difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea). ALS is the most common of the five motor neurone diseases.
Here are a couple of film recommendations which will teach you more about the disease.
Stephen Hawking is the most famous person with MND, and has survived a remarkably and unusually long time with the disease.
The documentary about his life, Hawking (2013), is written and narrated by Hawking himself. The film also goes some way to describe and explain his journey with the disease.
I Am Breathing
Another fantastic film that explores a man’s life with the illness is I Am Breathing (2013) – a Scottish feature which follows Neil Platt, a 30 year-old father who fought with determination to raise awareness of the disease.
The cause of the disease is unknown and there is no known cure. Around 5,000 people in the UK have MND at any one time, with half of people with the disease dying within 14 months of diagnosis. It kills five people every day in the UK.
Neil Platt’s widow, Louise Oswald, and the Scottish Documentary Institute team have also accepted the challenge. Click here to watch their videos and to learn more.
I have made a donation of £10 to MND Association via the I Am Breathing documentary campaign. Click here to donate.