26 Miles 4 MND is an awareness and fundraising campaign inspired by friendship, photography, my name “Miles” and the lunacy of my friend Cristian who wants to run 26 miles!
The aim is to create a book, raise £2,600 (or more please!) for the Motor Neurone Disease Association and to increase public awareness and knowledge about this cruelly degenerative, terminal illness.
I now live with a type of MND but until a few years ago I led an active life with a family and my career as a news cameraman and director working for the BBC. Less than a year after being diagnosed I was forced to stop working as I’d become too disabled to lift a TV camera and could barely walk across the office. Since then I’ve almost lost the ability to walk but use small lightweight stills cameras from the seat of my mobility scooter.
I feel lucky because my MND (called primary lateral sclerosis) is developing slowly – A third of people die within a year of their diagnosis. I’m still coming to terms with the fact that there is no cure or treatment. My mind will remain intact as my body slowly becomes paralysed. It’s likely that I will also lose the ability to speak.
Any one of us could get MND but a lot of people still don’t know what it is. Cristian and I are hoping to change that and raise a lot of money for the Motor Neurone Disease Association too.
There is up to a one in three hundred lifetime risk of developing MND. It kills most sufferers within 2 years of diagnosis yet at any one time there are 5,000 people in the UK with MND – so it’s not rare!
So what is 26 Miles 4 MND?
The man to the right of me here is my friend the photographer (and keen runner) Cristian Barnett. He’s going to photograph 26 people affected by MND – from those living with the illness to the clever people researching for a cure and lots of interesting people in-between.
I’ll be in each of the pictures (a bit like the one above) and will be writing the background story of everyone we photograph.
- So we’ll have 26 photographs and 26 stories of people whose lives have been touched by MND.
- Near the end of the “26 Miles” project, Cristian will run a marathon raising sponsorship for the Motor Neurone Disease Association.
- 26 Miles + 26 portraits + 26 MND stories and a 26 mile run all adds up to “26 Miles 4 MND”.
The collection will be published as an entertaining and informative book of human stories behind the words “motor neurone disease”.
Throughout the project people can donate via this link. Or donate via your mobile – Text mmnd99 £5.00 to 70070
During 26 days leading to the marathon, 1 portrait and story from each of the 26 will be published on this 26 Miles 4 MND website and across social media too.
There will be a book of the stories and photographs we’ve collected available for the 40th anniversary of the MND Association in 2019.
We have the support of some household names including the legendary Kim Wilde. They’ll be photographed and interviewed just the same as everyone else and you’ll be able to read their stories and see their pictures here too.
Or donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070
Unlike many cancers and other life threatening diseases, there are still no effective treatments for motor neurone disease. Please help us put a stop to this awful situation.
- In 2012, 1 out of every 232 people who died in England had MND.
- MND paralyses and relentlessly weakens sufferers’ muscles.
- Many people with MND can be trapped within bodies that refuse to move, unable to talk but perfectly able to think.
- The average life expectancy for the commonest form of MND is just 3 years from diagnosis.
- 5 people a day die from MND in the UK.
- The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
- The estimated risk in any one person’s lifetime of getting MND is 1 in 300.
Follow our journey –
Cristian and I would love you to join us on our “26 Miles” adventure as we move closer to the marathon run. We’ll be meeting and photographing some amazing, fun and uplifting people on the way that we’d love you to meet as well. To keep up with “behind the scenes” news click on this BLOG link or the one at the top of the page.