I'm a photographer who takes photos from a mobility scooter: After developing a variant of motor neurone disease a few years ago I was forced to give up my career as a TV cameraman and director. .
I raise funds and awareness for the MND Association, selling pictures at exhibitions and through my website scootershooter.co.uk. I have also co-created a book titled "26 Miles 4 MND" that tells the diverse stories of 26 people whose lives have been touched in different ways by motor neurone disease - 26miles4mnd.co.uk
Through my photography and writing I would like to challenge my own and other peoples' preconceptions of "disability" and "the disabled".
Cristian is out running the Vitality Big Half marathon in London today (Sunday 22nd August). He’s raising even more much needed cash for the MND Association to help defeat the monster called motor neurone disease. We’ve just passed the £5,000 mark on our fundraising. Can you help us take it higher?
If you can, please make Cristian’s efforts worthwhile by donating here. Thank you 🙂
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.
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.
To whet your appetite here’s a sneak peek inside –
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.
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!
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.
walking weekend 2011
walking weekend 2011
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
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!
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 –
Cristian Barnett 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.
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 –
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 –
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.