Portrait no.11

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

Cristian doing his thing!

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.

SITran and the Aubergine van .

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!!!!

Driving home we were treated to some beautiful scenery –

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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”

Posted on 04/11/2016 by Miles Pilling

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)