Portrait no.24

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24 of 26 Children’s author Suzanne Maguire was diagnosed with ALS variant MND in 2002 at Sheffield Institute for Translational Neuroscience (SITraN), which has large laboratories carrying out research funded by the MND Association. Suzanne is one of the remarkable few with MND still alive and relatively mobile sixteen years after diagnosis. Miles interviewed her at SITraN where she spoke about how it made her feel to have seen scientists working in the labs on MND research. “I’ve been here twice on open days and we have walked around the laboratories and seen the Zebra Fish they use for research, had each department explained to us and what they are hoping to achieve. It does make me very emotional because they are trying to find a cure and help people like you and I live a longer life. When I was diagnosed by Professor Pamela Shaw, I hadn’t a clue what MND was. My mother Eve was sitting behind me and she knew exactly what motor neurone disease was but I had never heard of it before. It was only when Professor Shaw began to describe it in detail and mentioned two to five years average lifespan that I realised it was so serious. The penny dropped and I realised it was a lot, lot more serious than I had anticipated. Initially I just had a weakness in my arms. Making cups of tea and carrying the tea bag to the bin I noticed a weakness. To be honest I never thought anything of it but thought 'hey ho, let’s go to the doctors’ and then five months later I’m being told it’s likely I’ll be dead in less than five years. I certainly see life in a different way as it’s made me more aware of my mortality. I was thirty-six when I was diagnosed and at thirty-six you are in the prime of your life! Now every day I wake up and I’m stiff, I’m weak. I find I’m relying on my loved ones more – ‘can you carry this? Can you open this? Can you cook? Can you vacuum?’. But I enjoy the birds singing, I enjoy our countryside far more. My mortality has been questioned. You don’t have the luxury of waiting until you’re eighty years old to sell up and get that cabin by the sea". . To help the work of the MND Association donate here https://www.justgiving.com/fundraising/26miles4mnd

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Portrait no.23

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23 of 26 Anita Sharma-James is Chair of the Worcestershire branch of the Motor Neurone Disease Association, a role she does as a volunteer. Her mother died of ALS in early 2011 at the age of sixty-eight, many years after migrating to the UK from India in the 1970’s when Anita was a baby. “I grew up in Harborne, Birmingham. My dad had come over in the fifties with his father and just worked really hard, then went back to India, got married and came back. He had worked so hard that he’d earned enough in three years to buy a house outright. Then he invited my mother and I to come over. It was a very interesting childhood in the seventies. I was asked to become chair of our local branch after the previous chair resigned and one of the board had died from MND. I’d been inspired by my mother so much but I don’t think I could have done it around the time that she passed away. I needed that distance in time to get out of the way of myself in order to help others. You can’t bring your own baggage. But with that distance you bring the experience as well, and the empathy. So I thought that it was something I could do and I wanted to do it well. The MND Association is one of the most well run and well organised charities. There seems to be expertise in everything related to MND. I’m so well supported as a chair as well. Experts in every field are at my finger tips. That filters down to those with MND. It’s incredible really. To anybody with MND my advice is don’t lose heart. Don’t panic. There’s so much out there that’s going to cradle you. Stay being the person that you want to be for as long as you can. There’s a lot that can be done. To carers of people with MND my advice would be to make the best of each day and try not to worry too much about the future. You will need to have adequate support in place to be able to help your loved one. Don’t be afraid to reach out for support from the MND Association. Carers need respite. Don’t feel that you’ve got to do it yourselves.” . To help the work of the MND Association donate here https://www.justgiving.com/fundraising/26miles4mnd

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

Thank you 🙂

Portrait no.22

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22 of 26 Professor Dame Pamela Shaw is a big hitter in the world of MND. She was made a dame in 2014 for her internationally recognised contribution to neurosciences, and particularly through the pioneering work she leads at SITran – The Sheffield Institute for Translational Neuroscience. “The first gene that was found to cause familial MND was back in 1993 and it’s called SOD1 – Not a bad name for a disease that causes MND! That gene code is for a protein whose normal function is to scavenge the free radicals that we produce as our cells are generating energy. There are now about thirty genes we’ve found that can cause MND. A tiny change in one building block of the SOD1 gene causes familial MND. At SITran we’ve shown that if you knock out that SOD1 gene with gene therapy you can just about cure mice of MND and the mice remain fine because there are other proteins that can do the same job. We are doing a human trial. There are various ways of doing gene therapy. One, which is the method we used in the mice, is to use a viral carrier (or vector) where the virus is harmless but we put inside the viral carrier a molecule and when it gets into the nervous system it knocks down the level of SOD1. In Spinal Muscular Atrophy (SMA), which is a childhood form of MND, that viral vector has been used to knock out SOD1 in children with SMA in a US trial. Children with SMA usually die of their MND within 2 years of being born. One dose of that viral vector and those kids are now normal toddlers so it’s fantastic! It will come for adult MND as well shortly I hope. In the meantime there’s a way of injecting a substance known as ASO. A lumbar puncture injection of this and that knocks down the SOD1 gene. It’s an international study and SiTran is the UK site. We’ve been doing it for about 18 months. The first two patients that we put into the trial have been sending videos of themselves walking up the garden steps that they hadn’t been able to do for three years. I’ve done probably twenty-four new treatment trials in MND and I have never ever heard people say they have improved before in a trial.” To help donate here https://www.justgiving.com/fundraising/26miles4mnd

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

Thank you 🙂

Portrait no.21

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.20

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 

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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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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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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 🙂