I Am Breathing

Guest blog by Sally Light, Chief Executive, Motor Neurone Disease Association

Sally Light, the Chief Executive of the Motor Neurone Disease Association on a right Royal week or two including winning gold at Chelsea Flower Show and causing a stir on the London Underground…

I was sitting on the train on my way to work this week. Nothing unusual about that though it is a rather long and tedious commute.

Based in London I make the two hour jaunt up to the head office of the MND Association in Northampton at least twice a week. On this particular Monday I was still in the bowels of the London Underground when I caught my first glimpse of a poster promoting our Motor Neurone Disease Association Awareness Month campaign. I just about managed to avoid an involuntarily yelp of joy; it was incredibly exciting and a real buzz to see the campaign on such a public platform… southbound, Camden Town, Charing Cross branch of the Northern Line, to be precise!

In nutshell, our Awareness Month in June is based around a documentary. Called I Am Breathing, the 70 minute short film tells the story of Neil and his family and his last few months living with motor neurone disease (MND). Neil started writing a blog fairly soon after diagnosis and soon became driven by two things; the need to leave some sort of legacy for his son Oscar, then just a few months old and also to spread the word about exactly what MND is.

He blogged about his desire to have film-makers chronicle the impact the disease was having on his life and that of his family and soon was the focus of a crack team associated with the Scottish Film Institute.

To read more about his story and that of the film please read the feature published in The Telegraph last weekend.

Hours and hours of filming were edited to tell Neil’s story as he wanted it told. Neil passed away in 2009 but thanks to the ongoing support of his wife Louise I Am Breathing has been released this summer and is being premiered at the Edinburgh Film festival on June 20, the night before Global MND Awareness Day.

As an awareness tool for anyone with little or no experience of MND you can’t get much better than Neil’s documentary. In partnership with the Scottish Doc Institute Neil’s message will reach to thousands of people through community screenings in the UK and much, much further afield. They range from a small gathering in someone’s home to full cinema screenings hosted by our amazing volunteers.

Neil said he wanted to be the poster boy for MND and appear on the side of London buses. Well we haven’t quite managed buses but the National Rail network is a great alternative thanks to some amazing supporters who have offered us free advertising space that we just couldn’t have afforded alone.

My exciting first poster viewing was extra special because it was the sixth month anniversary of my joining the Association. I am under no illusions of the challenges I face as a head of a fairly niche charity of a relatively rare albeit devastating disease.

Putting and keeping the Association on the map in the public consciousness is not an easy ask but we manage to punch well above our weight thanks to a dedicated, passionate and inventive staff and a massive number of equally enthusiastic volunteers.

Some of them have been with us since the very early days in the 1970s when Roger Carus a young father of two young children devastated by MND told his story to the Nottingham Evening Post and also persuaded accountant friend Martin Anderson to be the first Association Treasurer. Martin has since cultivated a second career as a garden designer and so it was that I found myself joining the waterproofed and wellied masses on their way to the Chelsea Flower Show.

Martin and his team of supporters from right across the UK did us proud and actually scooped a gold medal. Our Hebridean Weaver’s Garden for the Motor Neurone Disease Association was brilliant but equally impressive was the fact that Martin’s support of the Association is undimmed. He spent long days in all weather by his garden at Chelsea handing out thousands of leaflets on the design and all about the Association and MND itself.

The Association seems to hang on to our supporters and hopefully that is in part because they mean so much to us. We had the chance to thank just a few of those that do so much

to campaign for people with MND at a very special reception at the Royal Society the same week as the Chelsea Flowers Show. We were honoured that the event was attended by our Royal patron HRH The Princess Royal. It was the second event she had attended since I joined the Association and once again I was hugely impressed by her knowledge and empathy. Before the reception we held a formal round table with just some of those bodies and organizations that play a part in supporting people living with and affected by MND and they unanimously pledged their support of our MND Charter.

So a whirlwind couple of weeks that was topped off with a major fundraising event at Woburn Abbey yesterday. A generous benefactor inspired by the legacy of a family member who suffered a less than perfect service during his lifetime has committed to raise hundreds of thousands on our behalf for a specialist wheelchair service that we are now rolling out across new regions.

So no two days are the same. But in some ways they are. MND is a devastating disease and everyday I am reminded of that but also equally inspired by the efforts of so many people that join us in our unstinting effort to work towards a world free of MND..

Help us in that journey and spread the word this month. Oh and keep your eyes peeled when you are on the train or tube and send us a picture of our posters wherever you are!