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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 🙂

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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 🙂

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11 of 26. Karen Morrison, professor of neurology at University Hospital Southampton. When interviewed in 2016, Professor Karen Morrison was Bloomer Professor of Neurology, University of Birmingham and Honorary Consultant Neurologist at the Queen Elizabeth Hospital in Birmingham. She’s now Associate Dean, Education and Student Experience, Professor of Neurology and Director of Education, Honorary Consultant Neurologist at University Hospital Southampton. She was the specialist who confirmed Miles’s diagnosis of primary lateral sclerosis variant MND in 2013. “I have seen hundreds if not thousands of people with MND and every one of them is an individual. As I’ve got older and wiser I realise that just the interaction with the individual patients is what counts as being a good doctor for them. Yes, we have been working towards finding effective treatments but actually at the end of the day patients want you to be a good doctor above all, and certainly that’s what I feel I have in my control at the moment. We don’t have a treatment that stops the neurodegeneration. If only we had a treatment that slowed it down so that even if it progressed, if it progressed over thirty or forty years on average, that would be a real step forwards. So we don’t have that, but our knowledge about what causes the disease has increased so much over the last twenty years. I do think that treatments that really will make a difference will be here within the next ten years. From my experience, people with MND can live with such spirit. I’m a big advocate of never giving up hope and actually there’s much more to a fulfilled life than being able to wiggle your big toe! I am constantly amazed by the resilience of the human spirit in the face of this disease. I think it's really important that everyone, doctors included, travels with hope because I think travelling hopefully is a so much better way to travel than to travel with none.” ___________________________________________ 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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10 of 26 portraits for @26miles4mnd Sally Light, CEO of the motor neurone disease association. We photographed Sally Light in October 2016. She is the Chief Executive of the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland helping people affected by MND and the charity your donations to 26miles4mnd are supporting. “I didn’t have a connection to motor neurone disease when I started here but now I strongly feel I do have a personal connection because I’ve lost so many people that I’d come to care for. Most recently in the last twelve months we lost two trustees from the board which was very, very hard. But I’m optimistic. Last Thursday for instance, I went up to Nottingham and I presented a long service award to a volunteer who’d been with us for thirty years. So those things give you such a feeling of optimism about the ability that the community has to all get behind the cause and really make a difference. I think one of the really important parts of the Association is the massive contribution that’s made by volunteers. We have these eighty-eight branches and groups right across England, Wales and Northern Ireland and they provide fantastic local support to people. They really are the heart of the Association and we couldn’t do a proportion of what we do without them.” ___________________________________________ 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 #motorneuronedisease

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Portrait no.9

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9 of 26 Hilary Rowberry Hilary Rowberry was living with a slowly developing ALS variant of MND and working as a branch MND Association volunteer when we interviewed her in October 2015. She sadly died after a stroke on June 9th 2017. She told us she had not heard of motor neurone disease before she was diagnosed and felt that she should have done because she worked as a nurse for forty years. She was amazed at how varied the symptoms of MND can be. “I just say that the brains not connected with the muscles and the muscles have become weak in my legs – in my case in my legs – but that’s me. There was another lady near here who’s one arm went completely and there are people who look perfectly well up and about but they have no voice. I find this quite staggering – the different ways it affects people. I’ve been to a couple of the big MND Association meetings and you meet all sorts of different people with MND. Some are quite obvious as they’re in neurological wheelchairs and others are walking around looking like normal and then you notice they have a device that helps them communicate with you because MND has taken away their voice.” https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease

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8 of 26. Michael Wenham. Michael Wenham worked as an English teacher before training as a vicar. For many years he was the vicar of three village churches in Oxfordshire before MND caused him to retire. He’s been living with the primary lateral sclerosis form of motor neurone disease for more than eighteen years. A journal written throughout his illness has been turned into a book called “My Donkey Body”. It tracks the despair he’s felt at times as his body gives up, and the darkness that descends as his mind feels trapped. “I didn’t want to preach, nor give false comfort. I just wanted to say this is a bit what it’s like. It’s pretty awful. But it’s not all darkness. I feel grateful, apprehensive and occasionally very tired! The worst thing about living with PLS is the frustration and its prolonged nature. The good thing is being forced off the treadmill of activity. My consultant is right – There are pluses and minuses about living with PLS as opposed to ALS – It's a long haul living with PLS.” www.justgiving.com/fundraising/26miles4mnd #mnd #pls #als #PrimaryLateralSclerosis #running #TallinnMarathon

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5 of 26. Professor Martin Turner. Professor Martin Turner is a consultant neurologist based at Oxford University and is researching MND Biomarkers for use in drug trials. We interviewed him in September 2015. "The closest thing is Sherlock Holmes – when all the letters are dropping down in front of his vision and he’s assimilating masses of information just by looking at someone – that’s exactly what most neurologists do. We can assimilate huge amounts of information just watching someone get up from a chair, come into the room, how they introduce themselves. And that’s one of the massive draws of neurology because then you listen to the story. As a consultant 95% of the time, by the time you’ve heard the story you know the diagnosis. Then you examine the patient to confirm your thoughts and that examination in many ways certainly in MND is far more important than any test. In my research the buzz word is BIOMARKER – a biological marker of the disease activity. I’m looking for markers at the system level and that’s using very, very high resolution scans of the brain which both look at the structure of the brain and the individual nerve tracts and how they function – the individual nerve impulses that are being fired between these tracts – and looking at how that changes over time. If I can measure damage to tracts and show that they’re not getting worse or perhaps something that the nerve cells are releasing into the spinal fluid or the blood and we have some of these markers to measure and we can show that these levels have changed, we know that that drug (or we think) it might be working. I’ve never been more optimistic about better treatments for MND ever in my career. There’s more going on now than there ever has been. When I first started fifteen years ago it seemed intractable and now it seems absolutely practical, it’s just a question of when and not if." #mnd #ALS #running #tallinnmarathon www.justgiving.com/fundraising/26miles4mnd

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