Portrait no.21

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21 of 26 Jay Parker had been in his job as social media officer for the MND Association for five months when we interviewed him at their HQ, David Niven House in 2015. “MND ranks quite highly on the cruelty scale. It seems like torture to me. I couldn’t imagine having it. It has scared me and it makes me want to do things sooner in life rather than later just in case there’s something awful lurking round the corner. Since starting here I’ve seen lots of documentaries and things like that about people who have lived a normal life, quite happy then suddenly were just struck down with MND and it destroyed their lives. So yeah, it’s high up there for a terrible disease. In my job in social media we can measure success in numbers. Since the Ice Bucket Challenge the likes on Facebook and followers on Twitter have more than doubled. My goal would be to keep raising that awareness. Making sure people know what MND is. In fact I’m even doing that in my own family. I’ve only been here five months but I’ve fed back everything I’m learning in this job straight to my family – My sister and mum and dad. They’d not heard of MND either but now they feel exactly the same way as me. They all think it’s absolutely horrible.” To help the MND Association donate using this URL 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 🙂

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Portrait no.20

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20 of 26 Belinda Cupid left a job working in cancer research as a biochemist to join the MND Association. When we interviewed her in 2015 she’d been at the Association for fifteen years and was their Head of Research. She now works at the Cystic Fibrosis Trust. “Although I had not done any research about MND before, after I got the job and started mentioning motor neurone disease to friends all these people seemed to appear who had connections to the disease. It was really staggering! I had a job working in a lab but wanted to work more with people as well as use my research knowledge. A vacancy here came up that I got and I really haven’t looked back! I meet people with MND when I go out and give talks explaining what’s going on in research. When you find out that someone with MND loses their independence and loses their voice and everything else that goes with this disease, that catches people’s attention and they want to help. That’s why there’s such a huge commitment by the staff at the MND Association. They’re always willing to do anything they can. It’s probably one of the reasons why I stayed here so long!” . To help support the work of the motor neurone disease, you can donate here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn

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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.19

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19 of 26 Professor Siddharthan Chandran is the MacDonald Professor and Head of Neurology at the University of Edinburgh and director at the Euan MacDonald Centre for Motor Neurone Disease Research. His research combines specialist clinics with laboratory research on human stem cells. “I always advise newly diagnosed people to look at the MND Association website as that’s a very good website. I encourage them to sign up for research studies and I talk to them about research. I do that for various reasons, not least that we need it, but what I’ve learnt from people with the disease and their families is the value of research to the person and their family. Riluzole is the only globally licensed medicine and it is marginally beneficial – giving an extra one, two or three months to a persons lifespan. What everybody wants is something that will profoundly slow MND down. Even by six months or twelve months. Delay time for breathing support, for feeding support. It would be spectacular if we could buy a year! I’m professionally an optimist. I’ve seen great change in my career time in other diseases – MS has undergone a revolution in treatment since I was at medical school. I think MND is ripe for change and it would be terrific to contribute to that. I’m also hopeful because all the people I meet with the disease and all the families are up for promoting and enabling research. They want it. They need it. The least we can do is try and meet their expectations. My ambition, and the reason for coming up to Edinburgh (it wasn’t for the weather) is because Edinburgh has made a claim and has prioritised and continues to make strategic investments in this emerging area of medicine called regenerative medicine. There will come a day when neurologists will not only slow MND down and stop it, but in some instances begin to devise ways that you can restore and give back, to an extent, that which has been lost. I’m a great believer in that. I think it will happen.” . 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.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 🙂