Portrait no.4
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Category Archives: Update
Portrait no.3
Portrait no.2
Portrait no.1
The story so far –
Here is the link to our Instagram where we are publishing the 26 portraits – one a day up to Cristian’s marathon run.
Counting down…
…the 26 days leading to Cristian running the Tallinn marathon. For each of those days we will be publishing a portrait and story collected during the three years the project has been running. They’ll be published on our Instagram feed.
Click here to see the portraits and read the stories. You don’t need an Instagram account. Click here to go to our Just Giving page.
We are creating a book of the stories we have collected that will be published to coincide with the 40th anniversary of the Motor Neurone Disease Association in 2019.
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OLYMPUS DIGITAL CAMERA
Please do spread the word as we’d love to exceed the £2,600 target we’ve set ourselves.
Thanks 🙂
A 26 Miles road trip…
…actually a lot more than twenty-six
The challenge of 26 Miles 4 MND is for Cristian Barnett and myself to collect the stories of twenty-six people connected by the condition called motor neurone disease – from eminent professors to people living with MND and many interesting and often surprising people in-between. There will be twenty six stories, twenty six photographs and a lot more as well.
A few days ago Cristian and I travelled nearly a thousand miles in three days to get four more stories for the collection. It’s left me very tired and I should be resting but I’m aching (literally!) to get this blog post done because we again met some really inspirational people.
In Edinburgh we photographed Euan MacDonald and Professor Siddharthan Chandran of the Euan MacDonald MND centre.
Setting up at the Euan MacDonald Centre
Setting up at the Euan MacDonald Centre
Setting up at the Euan MacDonald Centre
Cristian doing his thing!
Euan MacDonald and Cristian
Euan MacDonald and Cristian
Cristian photographing Suzanne Maguire
Cristian and Suzanne Maguire
The day before, we visited SITraN in Sheffield and met Dame Professor Pamela Shaw and children’s author Suzanne Maguire who are also supporting 26 Miles 4 MND. All of these people in their own ways are doing their bit to try to rid the world of motor neurone disease.
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The amazing “Mr B” did all the driving and miraculously fitted in two training runs in preparation for his marathon in September. That twenty-six mile run will be the culmination of the fundraising part of the project! – please donate here!!!!
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Driving home we were treated to some beautiful scenery –
A marathon project
26 Miles was meant to take six months but three years on, after a lot of hard work and mileage, it’s only just nearing the finishing line. Many wonderful, talented and often extremely busy people have given us their time to take part. We thank them all.
A “26 Miles” book?
There’s work to do yet, and I wish we could include even more people but we’re hitting against that magic number 26 now. I’m currently transcribing and editing down the interviews, Cristian will be processing the main photos. A talented designer has offered her services and excitingly it looks like the project will become a book.
We want to make the book an approachable, entertaining resource for people touched by MND and also a tool to raise awareness amongst the general public. It will also include interviews and photos of the celebrities who have supported us – including Kim Wilde!
Money raised from “26 Miles”, which includes sponsorship for Cristian’s marathon run and any money made from the book, will go to the MND Association.
We have a Just Giving Page – Any donation large or small is greatly appreciated.
Please help us to end one of the cruellest diseases known by donating and sharing the word about our 26 Miles 4 MND project.
Next year will be the 40th anniversary of the MND Association. Let’s see if that can be the year when we have a big breakthrough for a treatment!
Some facts:
There is still no cure for MND and no effective treatment. As things are right now, it is arguably the cruellest of all diseases: All forms of MND lead to increasing paralysis taking away a persons independence and more often than not taking away their voice. It kills most sufferers within 2 years of diagnosis yet at any one time there are 5,000 people in the UK with MND – so it’s not rare! There is up to a 1 in 300 lifetime risk of developing MND. It affects over 400,000 of the world’s population and kills over 100,000 every year.
So please spread the word and if you can donate here. Thank you 🙂
“keep on going like a Duracell battery”
Actress Gina Bellman whose mum has MND
Cristian and I have taken another 6 portraits which gets us very close to the final 26!
When we started the project Sarah Ezekiel (who you’ll remember from my last post) suggested we had to include actress Gina Bellman in our 26 Miles portraits. Gina became a household name in 1989 for her performance as the title role in 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. Over in the States she has a huge fan following from her role as Sophie Devereaux on the TNT television series Leverage.
Gina’s mother has the rare primary lateral sclerosis variant of MND that I’ve been diagnosed with.
Gina’s mum on a recent family outing
In a weird way getting Primary Lateral sclerosis (PLS) is equivalent to winning the MND lottery because it’s the rarest of the 4 or 5 different subtypes. The disease usually develops very slowly and is unlikely to cause us to die. PLS can develop into ALS but most patients lead long (but increasingly disabled) lives.
I’ve heard it said that some in the “MND community” say the lucky MND patients are the ones who go early. I really disagree and think that every person we have met in the 14 months doing this project would too.
Yes it’s rubbish being ill – Attempting to do the simplest of tasks now leaves me worn out for the rest of the day, I find it increasingly difficult to walk and have to use a scooter to get around. It makes me depressed if I let it BUT the damaged motor neurones causing my body to “not work” are not me! I’m still as stubborn and determined as I was 10 years ago. In fact I’m probably more so since developing MND.
Gina says something similar about her mum:
“In a way the MND makes her even more determined to be independent than if she was a perfectly healthy 81-year-old. None of us expected her to keep going like a Duracell battery…other people in my mum’s friend group have died of age related diseases but mum’s still going strong, being stubborn, being independent.”
Please click to go to our Just Giving page or text to donate so that the MND Association can help more of us stubborn MND patients remain independent. Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070.
There will be more about Gina and her mum when we publish the portrait Cristian took of us in her lovely Kensington garden. That will be during the 26 days leading up to Cristian’s marathon run.
For the time being here are some snaps “behind the scenes” of the shoot.
(Click on the first photo to view in a lightbox)
Sarah’s story
The 26 Miles photography fundraising project is drawing to its conclusion – a conclusion when poor old Cristian will have to run 26 miles!
There are people that we’ve photographed and interviewed who have not yet featured in this blog. One of them is legendary MND warrior Sarah Ezekiel. She’s perhaps the most inspirational person I’ve ever met – and that’s saying something because literally everyone we’ve met on the 26 Miles 4 MND journey has been inspiring in their positivity.
One of the reasons I haven’t blogged about our photo shoot at Sarah’s is that I wanted to avoid defining her by her illness. She was diagnosed with motor neurone disease in 2000 at the age of 34 but Sarah is so much more than the MND that has ravaged her body and left her paralysed and unable to speak.
She studied art and art history and at first thought that developing MND meant she would never paint again but Tobii eyegaze technology has changed that and she now paints with her eyes. Her pictures have been exhibited all over the UK and as far afield as Qatar.
Click here to see her amazing art.
This is a photo of Sarah and I just before her 26 Miles 4 MND photo was taken last year –
Sarah and I chat before the 26 Miles 4 MND photo is taken a whole year ago!
A few months ago Sarah invited me to exhibit some of the street photography I take from my mobility scooter at a London exhibition she was helping to organise for the neurological charity Movement for Hope. She has a fun sense of humour and at the private view people became very excited because of a rumour that Russell Brand was going to visit.
I was sitting next to Sarah chatting when all this fuss was going on. I won’t repeat what she said about Russell Brand by privately typing with her eyes on her “Eye Gaze” assistive screen. Let’s just say it was quite rude but very funny!
Here are some pictures from the evening and of that famous surprise guest.
Sarah and I at the Movement for Hope Neurocreativity exhibition private view
Sarah and I at the Neurocreativity exhibition private view
Sarah and I at the Neurocreativity exhibition private view
Movement for Hope Neurocreativity exhibition private view
yours truly being photographed next to his street photos
The exhibitors and organisers and Russell Brand
The exhibitors and organisers and Russell Brand
The “Brand” effect
Sarah with Russell Brand
Sarah up close and personal with Russell Brand
Sarah up close and personal with Russell Brand
Sarah up close and personal with Russell Brand
Sarah up close and personal with Russell Brand
Sarah up close and personal with Russell Brand
Movement for Hope Neurocreativity exhibition private view
Movement for Hope Neurocreativity exhibition private view
People liked my photos!
hob nobbing with Russell Brand
Cristian and I are attempting to shoot the last of our 26 photos in the next few weeks.
I hope we make it because Cristian has been accepted to run in a very special marathon. More on that soon.
On each of the 26 days leading up to his marathon we’ll be publishing one of our 26 Miles 4 MND portraits. Click here and support us by donating to help us reach our target of £2,600 for the Motor Neurone Disease Association.
Putting the MND message out there
A couple of months ago I was asked to write a contribution for a book from the point of view of somebody with motor neurone disease. The Academy of Medical Royal Colleges were celebrating their 20th anniversary with a publication called 20 / 20 that looked at the past and future twenty years of healthcare.
I really appreciate the MND Association for passing my details onto the book’s creators. It’s given us another opportunity to create publicity about motor neurone disease – an illness that can seem like a taboo subject in non MND circles.
Expecting a tiny photo and a short paragraph I was bowled over to see that I’d been given a double page spread near the front of the book. It’s wonderful that my contribution will be read by a lot of health professionals who might not otherwise think about MND.
The launch was at the House of Lords on the hottest day of the summer so far. Here I am braving the sun before ducking back inside for another canapé.
Chris Van Tulleken (of twin brother TV doctors fame) was at the reception and I got to chat with him about MND. He admitted that, like most doctors, he actually had very little knowledge about it. That’s not surprising when you consider on average a GP will refer only one or two patients with suspected MND to a neurologist in their whole career.
He seemed like a great guy and was genuinely interested. Wouldn’t it be fantastic if we could feature MND in one of his TV items? – I’m going to email the MND Association VIP department and ask them to make contact.
I also found a new portrait subject for the 26 Miles 4 MND project – The Academy’s publications manager Rosie Carlow whose father sadly died of ALS.
You know, I am no longer amazed that virtually everyone I speak to knows someone who has been affected by MND. It is definitely not the rare condition we’ve always been told it is.
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26 Miles 4 MND – Near the finishing line!
Cristian and I expect to have all the photos finished before the end of the year and we now hope to exhibit them at an Academy of Medical Royal Colleges venue too…..all exciting stuff.
I also have a backlog of blog posts from behind the scenes of our photo shoots arriving here very soon. Keep watching this space.
It’s a photographic marathon but we are reaching the home stretch!
Don’t forget, the money we’re raising is helping the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
If you want a reminder of what we are all about, click HERE.
Nearly a thousand pounds has already gone to the MND Association. If you’d like to help us achieve our goal of £2,600 here is the link to our donation page or you can donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070
26 MILES 4 MND 