Sending MND awareness out into the world.

Great news! At this rate in about three weeks all of our books may be sold. Every copy sent into the world is helping raise awareness of motor neurone disease. I hope you’ll agree it’s worth continuing this and to do so we’ll need another print run. So starting from now, ten pounds from each book sold will go towards having more printed. The other five pounds will still go directly to the MND Association. Every book sold creates more awareness and more cash to defeat MND! Thanks everyone who’s bought a copy so far.

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Lift your post lockdown blues – buy a copy of our book!

At Christmas we had an unexpected donation to help us get more copies of the 26 Miles 4 MND book printed. That has enabled us to get another 50 copies printed which means we are now officially published with a copy on its way to the British Library for cataloguing! We’ve had fantastic feedback from everyone who’s read one of the original 20 copies. You can buy one yourself using the link below.

The book is professionally designed, edited and printed, with photography by the immensely talented Cristian Barnett and has 26 insightful, interesting and often very uplifting interviews with people ranging from a robotics scientist with ALS hoping to become a cyborg to ITV Pride of Britain winner Paula Maguire who began the the Ice Bucket challenge in the UK and personally raised nearly £5million.

Miles was hoping to sell the books in person at “real world” events but Covid-19 has put a stop to that for now. So you can now order a copy online for £15.00 plus £4.50 postage by clicking the link below. All money (except postage costs) will go to the MND Association.

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To whet your appetite here’s a sneak peek inside –

20 copies of the book printed and over £3,600 raised so far!

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Miles with Sarah Ezekiel at “Art Beyond Limits”

Just in time for the Art Beyond Limits MND Association exhibition at OXO Tower in London during October, we managed to get 20 copies of our book printed. We sold many of them at the exhibition (where sales of Miles’s “Scooter Shooter” street photos also raised over £5,000 for the MND Association).

Over Christmas we had an unexpected and very generous donation of money that will let us get another 50 copies printed.

They will be ready for sale soon.

Thanks everyone who has donated so far via our Just Giving Page. I had a look today and we have raised over £3,600 all of which has gone to the MND Association to support their invaluable work. Please keep the money coming. Won’t it be great if we can get the figure above £4,000!

Keep an eye out for the new print run of books coming very soon.

Thanks again,

Miles

 

Let’s finish off MND!

 

Click here to see a PDF of the 26Miles4MND book.

It took five years to get to this point but 26Miles4MND completed the Hull marathon on Sunday 22nd September with a three person team taking part in the four person relay!

Dean Collins, Cristian Barnett and Richard Brown (back left to right), came in 69th out of 143 relay teams. Cristian ran the two middle legs – just under half of the marathon!

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That’s me in the front of the picture at the finish line – The four of us met nearly 30 years ago at Art college. It was quite an emotional day for me as I would have loved to join them as the 4th runner. Developing motor neurone disease put a stop to anything like that for me.

But I’m lucky! I have the rarest and slowest developing type of MND (PLS). Ninety percent of people die within five years of an MND diagnosis. There is no effective treatment and no cure. That is why I’m making the most of my extra time raising awareness of this truly crap disease and money for the MND Association to help find a treatment and cure.

 

It’s hard to believe that’s me with Cristian, Richard and Dean in the pictures above from 2011. But if I hadn’t won the MND lottery with primary lateral sclerosis rather than the more aggressive ALS type I’d probably be dead by now.

Thanks so much everyone who has donated so far. We are very near the £3,000 mark. If you want to help us get there, you can donate here 26Miles4MND donations

And don’t forget, you can see the PDF of the upcoming book here 26Miles4MND The Book

 

 

The result of five years of hard work –

Click here to read 26Miles4MND The Book

It’s been five years in the making and is free to read and share, but if you can please consider donating on our Just Giving page to make the effort worthwhile  – Donate to 26miles4MND

A marathon date for your diary 

As a fitting finale to the 26Miles4MND project, on Sunday September 22nd Cristian Barnett, Dean Collins and Richard Brown will be running the Hull marathon relay. That’s got to be worth a few donations – Donate to 26miles4MND

Here’s the link to the book again – 26Miles4MND The Book and some photos of the guys in training for the marathon!

Thanks all of you who have donated so far.

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26Miles4MND – The Run!

Put Sunday September 22 in your diaries. That’s when the 26Miles4MND marathon relay team will be running the Hull Marathon to raise publicity and funds for the MND Association.

Here are some snaps of them suffering a bit in training –

 

You may remember that Cristian damaged his knee just weeks away from taking part in the Tallinn Marathon last year. Determined to complete a marathon, we press ganged some friends and partners into creating a relay team to run in this years Hull marathon (a bit closer to home this time!). As well as Cristian Barnett, they are Richard Brown, Dean Collins and Cristian’s partner Jackie Swanson.

They’ll each be running slightly different lengths from 5 miles to just over 10.

Why not let their pain be the MND Association’s gain by considering a donation on our just giving page justgiving.com/26miles4mnd.

Thanks so much to everyone who has already donated.

Watch this space and the 26Miles4MND instagram feed for news of the soon to be published book.

 

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 🙂