26 Miles 4 MND – The book!

26 Miles is being turned into a book! We will be including the original 26 plus more people who’s lives have been affected by MND.
There will be some true luminaries including the pioneering robotics scientist Dr Peter Scott-Morgan who intends to use technology to “thrive” with MND. We visited him on Tuesday. An absolutely incredible man –

 

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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.

 

 

 

Portrait no.26

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26 of 26. Euan MacDonald MBE. Euan was 29 years old when he was diagnosed with motor neurone disease in 2003. He lives in Edinburgh with his wife and two sons. Following his diagnosis, Euan and his father Donald MacDonald CBE resolved to ensure MND research was brought to the forefront of everyone’s mind in Edinburgh and further afield. Being entrepreneurs from investment backgrounds, they established the internationally recognised centre for MND research – The Euan MacDonald Centre. We photographed Euan there in June this year. “The last 15 years have been full of ups, downs, changes and adaptations. When I was first diagnosed the situation was similar to what it is now with only one drug approved to treat MND. Its effects are minimal. But huge strides have been made in areas like genetics and stem cells. I'm convinced treatments will come. Spending time with people like Professor Siddharthan Chandran and others just gives you more confidence in that. While we're waiting for those treatments, I should mention something that has improved my quality of life and extended it – my tracheostomy. It was done 6 years ago after I was admitted to hospital with a chest infection. Tracheostomies for people with MND are rare in the UK. Research has suggested that in an 18 year period there were 38 of us. The reason I'm so passionate about it is because of what it's given me – 6 more years (and counting) with family and friends. 6 more years with my boys. It's impossible to put the value into words. It’s not for everyone but I know I was the recipient of complete pot luck, not a systematic approach. I happened to be under the care of an anaesthetist who said it was an option and they could deal with the after care in my home. There are not many home ventilation teams, experienced in keeping people with a tracheostomy in the community, in the UK. I'm asking that pot luck be taken out of it – and that it can be an option regardless of where you live. I'd like to say thanks to Miles and Cristian. What they are doing with 26Miles4MND gives more hope for people like me that MND will one day be a thing of the past!” Donate: 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.25

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25 of 26 We were absolutely thrilled when pop and rock star Kim Wilde agreed to be photographed to support 26Miles4MND. Kim is married to a good friend of Miles, the actor Hal Fowler. Close mates at school, whilst Miles went into photography and television, Hal decided to take to the stage. It was when he played the part of Cousin Kevin in the stage show of the Who musical Tommy that he met Kim Wilde who was playing Tommy’s mother. That was in early 1996. Hal proposed to Kim in June and on September 1st the same year they were married. Hal’s West End credits include Alex in Aspects of Love, Billy Bigelow in Carousel, Javert in Les Miserables and Arnaud du Thil in Martin Guerre. He’s also acted in many TV dramas as well as appearing on the big screen, most recently in Solo: A Star Wars Story. Kim is obviously most famous for her hit 1981 single Kids In America but she’s also had seven other UK top ten singles. Many of you will know she has been busy touring this year promoting her new album “Here Come the Aliens” which has put her back in the UK album charts for the first time since 1993 reaching no.21! The 26Miles4MND photoshoot took place at Kim’s beautiful 16th century barn conversion in 2015. Little did Miles know at the start of the day that he’d be playing guitar with a rock and pop legend! Slide the picture to see Hal and Miles too. To donate to the MND Association – 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.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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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.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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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.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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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 🙂