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.

Miles in book

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.

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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 

 

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“The brain is plastic…..”

If this 26Miles4MND marathon fundraising project was a real, human entrant in the London marathon, it would be in a pantomime horse outfit, dodging London traffic, only half finished two weeks after the race was officially over.

Sorry. I’ve got no excuse – I’ve just had a ton of stuff going on in my personal life and Cristian has been inundated with photographic work.

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Climbing the wall….

So we seemed to have hit a wall of the sort marathon runners (apparently) experience, but we’re teetering at the summit and are about to come down the other side. Recently we took another portrait and more are in the pipeline.

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A few days ago we interviewed and photographed the formidable Professor Karen Morrison (pictured above with Cristian). She is my neurology consultant and the person who diagnosed me as having a variant of motor neurone disease back in 2013.

The pictured “plastic brain” was used as a prop in her portrait. I’d definitely count her as one of the most intelligent people that I’ve ever met. She really is quite awe inspiring –

Professor Morrison trained at both Oxford and Cambridge universities, also trained in America and once spent time amongst Inuit people living in their traditional accommodation – again as part of the journey  to being one of the foremost experts on motor neurone disease in the UK.

….Whilst chatting to her and hearing the fascinating information about her life, I also found out that my joke about brains being “plastic in real life too”, is something she’s heard many, many times before. I think she actually shook her head in disbelief when I said it. Brains are plastic though – look it up if you don’t believe me 😉

Here are some photos of one great brain and some others doing what they do best – hanging around pointing cameras at people. There’s also a sneak preview of what the finished portrait could be like if you click on the pictures and look closely.

I’ll be writing more about Professor Morrison and why she chose to specialise in neurology and motor neurone disease in particular when we publish the 26 portraits in the month leading up to Cristian’s marathon.

  • In case you’d forgotten, or this is your first time here, 26Miles4MND is a marathon portrait photography project being undertaken by the editorial photographer Cristian Barnett and his close friend Miles Pilling (who happens to have a type of MND).
  • We are taking 26 portraits of people who’s lives are / have been affected by motor neurone disease. Cristian has persuaded me to be in each of the portraits alongside every subject. They are all being shot in a similar unique style.
  • Cristian will be running a marathon once all the portraits have been taken.
  • On each of 26 days leading up to the marathon, we will publish one of his photographic portraits and a brief piece of writing to accompany it.
  • So there will be 26 pictures of Miles alongside the individuals that we have persuaded to take part and Cristian will be running 26 miles. Hence: 26miles4mnd
  • We have also persuaded some household names with links to Miles in his former life at the BBC and beyond to be photographed. These portraits will be separate from the other 26 and will hopefully help to raise awareness in what we are trying to achieve. Keep in touch with the project at @26miles4mnd or https://www.facebook.com/26miles4MND or bookmark this website to see their photos when we publish them.

We’ve already raised just under a thousand pounds. Our target is two thousand six hundred. The money people have kindly donated so far has already gone to the Motor Neurone Disease Association.

Our hope is that during the 26 days leading up to Cristian’s heroic marathon attempt, people around the web and also in the real world will become interested, start talking and sharing about the project and the money will start to flow in. It would be absolutely fantastic to make more than our target figure.

If you’d like to help us achieve that, here is the link to our donation page again, or you can donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thanks for reading 🙂