"It’s the disease that most health professionals say they’d least like to get. It’s the most cruel and undignified end."
(Louise Platt, The Plattitude blog, 2008)
This year, on 21 June, in a wee village in Scotland a small group will get together to watch a film about a man who dies from Motor Neurone Disease (MND), also known internationally as ALS, ELA, or Lou Gehrig’s disease. At the same time, in a cinema in Mexico City, people are arriving from all over to see the the film, I AM BREATHING. In Russia, Mexico, Kosovo, Kenya, India, Bahrain, Australia and across the world others have volunteered to screen the film – in village halls, schools, churches, living rooms, pubs, and theatres.
They have been inspired by the story of Neil Platt, who died aged 34, 14 months after being diagnosed with MND/ALS. He was determined more people should know about the disease.
Within a year, he went from being a healthy young father to becoming completely immobile from the neck down. As his body got weaker, he used his remaining months to communicate about his illness. He collaborated with the filmmakers on I AM BREATHING, wrote a blog, and committed himself to raising awareness around this devastating disease. He was determined to play a part in making MND/ALS history and this fuelled his desire to share his story and build a community of people to join the fight.
Neil began a campaign –
– a campaign that he expected us all to finish. He wanted to be the poster boy for MND/ALS, he wanted to be on billboards, in every newspaper and across television channels around the world. During the short time that he lived with MND/ALS, he achieved a great deal – but it was really only the beginning...
"At the end of this campaign lies a cure... I am not talking about miraculous cures, you will all have gathered by now that I am a realist. I'm talking about my living a little longer, giving me the chance to impart more knowledge."
(Neil Platt, The Plattitude blog, 2009)
I AM BREATHING has been critically acclaimed since its world premiere at the International Documentary Film Festival in Amsterdam in late 2012:
"Intimate documentary examining a normal-but-remarkable man and wife's handling of his fatal disease ranks among the year's most moving films."
(The Hollywood Reporter)
June 2013 will see the documentary burst on to screens big and small across the world. Fuelled by Neil’s vision we will share his story and build a community of people to join the fight – and you should be part of it.
It is by raising awareness of MND/ALS that we further Neil's vision to combat ignorance of the disease and create an army of people across the globe, all working towards a world free of MND/ALS.
You can support Neil's campaign by holding your own screening of I AM BREATHING on 21 June 2013, Global MND/ALS Awareness Day, or shortly after. Your screening can take any form – we encourage you to be as creative as possible.
We know Neil would have loved the social side of Global Screening Day and would have reminded you all to have a little fun while raising awareness. He thought it useful to remind people that even just donating the price of a pint of beer can go a long way to supporting all of the research currently being done for MND/ALS, and we would encourage you all to raise a virtual glass in his memory.
We'll guide you through the whole process with detailed instructions. The first thing you should do is register your interest so we can start a dialogue about your ideas. If you have already done that, you can now book your copy of the film and publish your event on our website.