beyond no.26

This project started as a quirky idea between a couple of friends. One of them, whose name is Miles, had recently been diagnosed with a type of MND.

We decided to find 26 people who’s lives had been touched by motor neurone disease. We’d interview and photograph them, then publish the pictures and edited interviews on Instagram one at a time over 26 days leading up to Cristian running the Tallinn marathon – yes a 26(.219) mile run. To truly live up to the name “26 Miles”, Miles appeared in each of the 26 photos too!

Here we are just after the idea was hatched back in 2015 –

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We wanted to raise awareness about motor neurone disease and some money for the MND Association.

Now we are making 26 Miles 4 MND into a book that will be published next year during the 40th anniversary of the MND Association. It will include the original 26 photos plus several more people who are luminaries in the world of MND. In fact we’re just back from Torquay where we photographed a game-changing MND trailblazer. More about that on here soon.

 

 

 

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Portrait no.18

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18 of 26 26Miles4MND is very happy to have the support of some household names. Today’s portrait is of the television presenter and journalist Nick Owen. Miles was lucky enough to work with Nick Owen for more than fifteen years while working as a cameraman and TV news director for the BBC in Birmingham. They first worked together at the BBC’s iconic Pebble Mill studios. Nick had worked there during it’s heydays: From 1992 he co-presented Good Morning with Anne and Nick, the breakfast TV show with an audience of more than 15 million viewers. Miles met Nick when he joined the BBC in 1998 just before his 30th birthday. He was one of the new breed of multi-skilled technical staff and worked as a news cameraman and picture editor as well as a live news director and vision mixer. After getting his MND diagnosis, Miles struggled in vain to continue working at the job he loved but in 2014 MND forced him to retire, leaving the BBC (and Nick Owen) behind. Nick is as friendly and supportive off screen as he appears on it. When we contacted him to ask if he’d be photographed for our 26Miles4MND project he agreed without hesitation. The photo was taken in the BBC Midlands Today studio at the Mailbox in Birmingham – the studio where Miles had the pleasure of directing Nick as he presented the news programme BBC Midlands Today. To help the work of the Motor Neurone Disease Association donate via our Just Giving page: https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.17

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17 of 26 Modern computer technology has been a game changer for people with motor neurone disease. It enables those paralysed by the disease to continue to communicate and control their environment (turning on lights, closing curtains etc) and even to move around by using their eye movements and any other small bodily movement they may have left. Adam Waites is Head of Assessment for Smartbox Assistive Technology, a company that creates assistive technology solutions, helping people with disabilities to do things that everyone else takes for granted. We interviewed Adam in October 2016. “To control a computer with your eyes using “Eye Gaze” technology you have two infrared emitters either side of a computer screen and a camera underneath in the middle. Those infrared emitters create a glint in the surface of the eye. The camera is then able to see where you are “eye pointing” on the screen. So fundamentally your “Eye Gaze” then becomes a glorified mouse and you can control a computer just like using any other cursor. There was a niche in the market when Smartbox first started that no-one was really addressing which was to adapt a computer as a communication aid. Paul Hawes who founded Smartbox couldn’t understand why the assistive technology companies that were out there weren’t using computers. Those guys that made dedicated devices and were the only options ten years ago then missed the boat. We came in and took that market share and were seen as being forward thinking. We use “One size fits one” as our catchphrase when people ask “what’s the best thing?”. Our response often is “well that’s not an easy question to answer because it depends on you”. People’s communication aids are becoming more and more personalised – less generic and more about the user. So we’re seeing lots of interest in voice banking now. People who are losing their voice record and bank it and then have their own voice synthesised. There are also now a couple of teams around the world exploring Eye Gaze driving. There are some safety issues with that, but there has been some success!” . https://www.justgiving.com/fundraising/26miles4mnd

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Portrait no.16

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16 of 26. In February 2000 Sarah Ezekiel noticed some weakness in her left arm. Two months later she was given a diagnosis of ALS. Now she can only move her eyes and uses Tobii EyeGaze technology to communicate via her computer. The technology tracks her eye movements and reflects an infrared beam that acts as a cursor onto an adapted PC screen. She also uses it to create EyeGaze artwork that has been exhibited around the world. “I was thirty-four and pregnant with my second child and mentioned my symptoms at an antenatal appointment. When they referred me to a neurologist I was surprised. I thought that my symptoms were related to my pregnancy somehow. I didn’t know what motor neurone disease was. They told me to bring someone with me for my diagnosis. My husband came but he got fed up of waiting and left. So I was alone being told this most terrible news. But I’m glad now because I was able to take in the information undisturbed. I just remember thinking ‘how will I look after my children?’ My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and I spiralled into deep depression. But I pulled myself up from rock bottom and now see MND as a window of opportunity. I don’t think I would have done much with my life if I didn’t get ill. It hasn’t been easy and I still get low and have difficult times. But I’ve survived a long time and achieved more than I could have expected. I’m enjoying being an artist. I don’t think I would change anything if I could”. . To help support the work of the Motor Neurone Disease Association, please donate here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease #Tallinnmarathon

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Portrait no.15

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15 of 26. Actor Gina Bellman, interviewed and photographed in October 2016. Gina Bellman became a household name in 1989 for her performance in the title role of Dennis Potter’s drama Blackeyes. She’s also well-known as Jane in the sitcom “Coupling” and for acting alongside James Nesbitt in the BBC drama Jekyll. In the US she has a huge fan following from her role as Sophie Devereaux on the TNT television series Leverage. Gina’s mother has the PLS variant of MND. “One of the first things I did was to get in touch with the Motor Neurone Disease Association and send off for the ‘Newly Diagnosed’ pack that they have . That was an amazing resource for me. I made a pack for each family member. We each had a little handbook about the diagnosis and what the symptoms would progress to. It was really useful to talk about depression and to read about how antidepressants could be a useful tool for people diagnosed with PLS. My mum had never been depressed, she’d always been a cheerful person. For her it went straight from the dragging foot to the uncontrollable laughing and crying – emotional lability. That was a really terrifying period. Helping to care or support someone with MND is not a burden, but a wonderful opportunity to relearn everything you thought you ever knew about the majesty of the human spirit. Although, I would do anything to turn back the clock or obliterate this disease, the fact is, my mum has it and we have to cope with it, and I am grateful for the opportunity it has given my family to look after and support one another and to learn from everything that MND chucks at us everyday.” . To help support the work of the Motor Neurone Disease Association, please donate here: https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.14

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14 of 26 Matthew Hollis – Communication Aids Co-ordinator at the MND Association. Interviewed August 2015. Matthew wakes up each morning knowing he has a 50/50 chance of developing motor neurone disease. His family DNA carries a faulty genetic code that can cause the inherited form of the disease. “MND runs in my family – I lost my mum to it in 2011, my gran in 2002, my great gran in 1954. I haven’t traced it back any further than that yet so we don’t quite know when it started, but it seems to be running down the female side of my family. So the disease is obviously close to my heart. My job role is to help get communication aids to people with MND. The NHS has a requirement to provide them, but it doesn't happen in a timely manner. There are delays of 18 months in some areas. So we help health professionals deal with those problems and loan equipment to bridge the gap. It angers me to an extent but to be fair, the NHS is now moving in the right direction in terms of communication aids. Ultimately there’s a 50/50 chance that I could get MND myself, but to be honest I don’t really think about it. I looked after my mum for about three years and that puts a totally different perspective on life. If it happens it happens and I’ll be ready for it. Otherwise I try and enjoy myself, have nice holidays and just get out there with life.” ___________________________________________ To help support the work of the Motor Neurone Disease Association, you can donate here: www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease #Tallinnmarathon

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you.

Portrait no. 13

 

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13 of 26. Paula Maguire – champion fundraiser. Paula Maguire was crowned Fundraiser of the Year at the ITV Pride of Britain Awards in 2015 after personally raising four million twenty-seven thousand pounds and starting the ALS/MND Ice Bucket Challenge in the UK. “In June 2009 my uncle Stuart was diagnosed with motor neurone disease. At that time I’d heard of it but couldn’t have told you what it was and none of my family had even heard of it. Then only nine weeks later he died. At that point we were all still coming to terms with what MND was and what it would mean and how it would affect him. It was so very, very quick. The day after he died I decided that people needed to know what MND is because of how devastating it was and the fact it’s terminal and no one actually knew about it. I thought, money aside, we needed to raise awareness. People would ask how he died and you’d explain he had motor neurone disease and every time you had to got through the whole back story of what MND is. I used to watch my Auntie going through that and I thought to myself she shouldn’t have to explain all the time. People should just be aware of what it is. So I’ve now done 7 Great North Runs, 2 Great Yorkshire runs, a Great South Run, the Leeds half marathon. I’ve also jumped out of planes, abseiled down a viaduct in Derbyshire, done Tough Mudders, jumped in the sea on Boxing Day. There’s lots and lots I’ve done but there’s still lots I want to do as well to keep trying to raise awareness". ___________________________________________ Help find an effective treatment for MND by donating here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease

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Donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you.