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 –

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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.

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.

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 

 

A resurrected friendship

Just before Easter I spent the weekend with an old friend of mine who’s supporting the 26 Miles 4 MND project. He happens to be a successful actor these days, and the husband of Kim Wilde.

Here’s a picture of Hal and I relaxing in the jacuzzi that’s in their back yard –

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“Cheers”

Hal Fowler was my best mate during our teenage school years. At the time our lives felt very creative, quite chaotic and we enjoyed breaking the rules. In truth though it was all fairly innocent and we never actually went too far: We ended up in hospital just once due to too much “high spirits” and although we had a few encounters with the police, we were never actually arrested!

The best months were the ones we had off school to revise for our “O” and “A” levels. Not much revision got done – They were sunny summers and we spent most of the time getting pissed, pushing boundaries and pulling girls. Needless to say Hal and I both ended up “qualification challenged”, though in our individual ways that hasn’t held either of us back in life.

To be honest it was mostly Hal who did the pulling girls. He seemed to have the knack. It was a knack that continued after school, through his time at drama college and then onto the West End stage. Whilst acting in The Who’s musical Tommy, Hal “pulled” Kim Wilde. At that precise moment his pulling career ended. They fell in love and the rest, as they say, is history.

picking up where we left off

Apart from going to each others weddings, there was little contact between Hal and I in 27 years. Then I sent Hal a text about the “26 Miles” project raising money for the MND Association and he agreed to get involved. It’s resurrected our friendship which happily these days is a bit less hedonistic.

Hal regularly appears on stage, TV and the big screen. He’s acted in West End musicals and is currently playing Cheshire Cat in wonder.land at the National Theatre.

Years before Hal’s professional performing career we’d perform together in our home city of Oxford – busking – I’d sing and play guitar, Hal would sing and accompany on his double bass. We were good at it too! We’d get there and back in a battered Citroen 2 CV with the neck of Hal’s bass sticking through the open sun roof. All of the money was spent in the pub later. Fun times!

There are no pictures of us in that 2 CV, but here are some behind the scenes shots from the morning Cristian and I spent at Hal and Kim’s taking their 26 Miles portraits. We resurrected our busking duo for the day – I think you can see that we still have “it”… whatever “it” is….

(Click on the first picture to enter the gallery)

Cristian and I are having fun on our “26 Miles” journey and we hope you enjoy following us on this blog, but the reason we are doing it is deadly serious. We are trying to raise £2,600.00, or more, for the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

Click HERE for the background to our money raising campaign.

MND is a terrifyingly cruel disease that can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe. It kills a third of people within a year and more than half within two years of diagnosis.

If you’d like to help us achieve our goal 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 

Thanks so much for reading 🙂

“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 🙂

The “South African David Beckham” with motor neurone disease.

Last Friday I took my dad, who’s a big rugby fan, to Telford because I’d heard on the MND grapevine that there was going to be a screening of “Glory Game” – the documentary that tells the story of South African Rugby legend Joost van der Westhuizen and his battle with motor neurone disease.

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In South Africa, Westhuizen is treated like a rugby playing David Beckham. I couldn’t help imagining how much quicker we’d find treatments and a cure for MND if, God forbid, David Beckham developed MND.

Joost van der Westhuizen was at the screening because the film is touring the UK during the Rugby World Cup. There’s a quote of his that stood out as being typical of the spirit of MND Warriors everywhere –

“They said I would be in a wheelchair after a year. They said I had a 20% chance to live two years. And I decided ‘stuff them’. I will decide when I go.”

He’s lived more than 4 years since being given that doom laden prognosis.

It was a great evening, a chance to meet up with some of the friends we’ve made during the 26 Miles 4 MND campaign so far and to meet more inspiring people who we hope to include in our 26 portraits.

These are some snaps from the night. (Click on the pictures to see them in a light-box).

Joost van der Westhuizen played as a scrum half for the South African rugby union team. He represented South Africa in 89 test matches, scoring 38 tries, and was a member of the victorious South African rugby team at the 1995 world cup. He’s patron of a South African motor neurone disease charity called the J9 foundation (scrum half normally wears a number 9 shirt).

If you’d like to help find treatments and a cure for motor neurone disease, click here for the “26 Miles” Just Giving page. Any amount, however large or small, will be greatly appreciated. 

Or donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070

The money we raise will go to the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

Thank you very much 🙂

The Fighter

Since Cristian and I began this fundraising project, we’ve been astounded at the positive attitudes and happiness of everyone we’ve met.

I wasn’t really expecting another such uplifting experience from our meeting with ex-amateur boxer Richard Jones because of his gruelling history with motor neurone disease: He developed a genetic variant of the illness 3 years after his twin brother died from MND.

As if that wasn’t enough his wife, after watching her brother-in-law wasting away to death, couldn’t bear to watch her husband do the same. She decided to leave Richard and he was left to fight his own corner. His consultant told him he had between 3 and 5 years to live.

Jump ahead 11 years and Richard is still very much alive!

Richard Jones

“When I got to 5 years, I thought that was it. I was waiting for something to happen but nothing did – laughs – I celebrated with a few pints!”

Although he uses an electric wheelchair to get around, has lost some of his speech and lives in a supported housing complex, he comes across as a happy man and is very philosophical about MND.

We were invited into the shared lounge in the building where he lives and while Cristian set up his Hasselblad I interviewed Richard. He was obviously a man with some inner steel, but I sensed kindness in his eyes, and real happiness. It’s a character combination that keeps recurring – every time we meet someone affected by MND.

“I used to do martial arts, my dad was a champion boxer in the army, my dad and my uncle were boxing champions in Worcester. I played rugby, cricket and cycled.”

When he was told that his twin brother had motor neurone disease 17 years ago, he had to go to the doctors to ask what it was. No one around him knew anything about it and he collected leaflets to help educate his friends and his brother. The more he found out, the more he thought “that can’t happen to Andy, my brother”.

Richard and his ex-wife nursed Andy through the illness –

“I used to feed him, bath him, wash him, take him to the toilet – all of which I loved. He was the funniest person you could meet. I was the one that could look after myself. Andy was funny.”

Cruelly, MND developed in Richard 3 years after Andy’s death. The first symptom he noticed was difficulty walking during his job at Worcester Porcelain. As Richard talked to me he kept chuckling as he remembered that he was still alive and the doctors gloomy prognosis had been wrong. His advice to anyone who is diagnosed with motor neurone disease?

“Enjoy life as much as you can, and if you’ve got a twin like I did, stay close because your twin will always stand by you. Live life to the full!”

Richard Jones

Richard Jones

Richard Jones

Richard Jones

Richard Jones

If you’d like to help people with MND like Richard, you can donate to the MND Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

Donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

OR

Click here for the “26 Miles” Just Giving page. Any amount, however large or small, will be greatly appreciated. 

Thankyou 🙂

Getting quite excited now…you could say Wilde even…

Tomorrow we will be photographing Kim Wilde and her husband the actor Hal Fowler for 2 more of our 26 Miles celebrity portraits. Can’t wait to see her and my old mate Hal again.

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Kim Wilde singing Kids In America in 1981

http://www.kimwilde.com/

After that we’ll be interviewing and photographing Sarah Ezekiel for another of our 26 MND portraits. We are slowly but surely getting closer to our target (and nearer to Cristian having to run 26 miles – the poor git!).
Here’s a link to Sarah’s website. She creates amzing art using Eye Gaze technology. Well worth a look if you are already thinking about Christmas –
http://sarahezekiel.com/#/eyegaze-art/4562566580

Stories and photos will be on here soon 🙂

Meeting a warm hearted Ice Queen

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Cristian getting a bit too excited at the thought of Paula and I having icy water thrown over us (he stayed behind the camera!).

I suppose if you visit the home of newly crowned Pride of Britain “Fundraiser of The Year” Paula Maguire, Ice has to make an appearance at some point.

Paula was the lady that spotted the fund-raising potential of humans throwing buckets of icy water over each other.

She started the UK version of the phenomenon called the Ice Bucket Challenge, to raise much-needed money for the Motor Neurone Disease Association.

Starting with a humble target of five hundred pounds, by yesterday afternoon the total on her Just Giving page stood at four million, fourteen thousand, two hundred and seventy-nine pounds!

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Paula began raising money for the MND Association in 2009 after her uncle Stuart died just nine weeks after being diagnosed with motor neurone disease. Her initial aim was mainly to raise awareness because, before her uncle’s death, most of her friends and family had not even heard of the illness.

Since then she’s run every Great North Run, two Great Yorkshire Runs, a Great South Run, the Leeds Half marathon, Tough Mudders, the London Marathon, abseiled down a viaduct and jumped in the sea on Boxing Day amongst many other challenges.

But the thing that really caught the great British public’s attention, was the video she posted of herself having a bucket of iced water thrown over her. It immediately went viral, and began the Ice Bucket Challenge craze that swept the UK and raised unprecedented amounts of money for the Motor Neurone Disease Association – half of their annual income for the year!

In her uniquely selfless style, after Paula received the award, she’s quoted as having said “You only have to meet someone with motor neurone disease to see how devastating it is. I just hope Pride Of Britain will boost that awareness. I don’t do this for me, I don’t do this for awards, I do it to help all those people who are living with motor neurone disease. This award is for all of them and for those not here anymore”.

Cristian and I visited Paula and her husband Robert to photograph them as one of our 26 Miles 4 MND portraits. You’ll be able to see Cristian’s ice sharp portrait during the 26 days leading up to his marathon attempt in November / December this year. Until then, here are some more snaps taken by myself and Robert of us setting up for what was to become Paula’s TENTH Ice Bucket Challenge!

If you’d like to help the great work of the Motor Neurone Disease Association, click HERE for the “26 Miles” Just Giving Page…. We’re aiming at raising two thousand six hundred pounds. That’s a bit more ambitious than Paula’s initial five hundred pound target – Watch this space!

(click on any picture to enter the gallery)

The Blood Moon Legend has it that –

– “on a Blood Moon night and day you must donate to your favourite charity campaign”…

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…..so go on then -Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070  or visit our just giving page

Thank you 🙂

An emotional real life meeting for the couple who met on the internet!

I met Neicey Mann online and sent her a message one evening asking if we could meet in person so I could photograph her….. Being a well brought up lady, she would normally have refused point-blank and told me where to get off, but the photos were the first of our “26 Miles” pictures – the beginning of Cristian’s and my campaign to raise money for the Motor Neurone Disease Association.

Miles and Neicey

Neicey runs a Facebook support group for people who live with PLS (or primary lateral sclerosis), which is the type of MND I was diagnosed with. You have to live with PLS or be a carer of someone with it to join, so whatever is said there feels private and in the 2 years that I’ve been a part of it, the group’s been a great source of comfort to me and also the cause of a lot of laughter! As you can see when I met Neicey in person the laughs continued.

Neicey is a nickname that was given to “Denise” – Neicey’s real name – by her friends when she was a kid and it stuck. She’s a Brummie through and through and wanted to set up a support group for this “rare” type of MND where people could support each other, ask personal questions and have a laugh as well.

When I was invited into Neicey’s real home, I felt very emotional as it was the first time I’d met somebody else with my type of MND – I recognised she had PLS straight away, and so did Cristian – she was walking and moving in just the same crooked, awkward and stiff way as me!

cdAs Neicey’s symptoms first began to affect her, she was a singer in a band and had a CD released called “Decree Neicey” – shortly after getting divorced. Sadly she’s had to give up singing because of how much MND has weakened her voice. She’s also lost the strength to play the guitar.

She seems to be a pure extrovert (which is probably why she enjoyed performing so much) – I interviewed Neicey whilst Cristian set up his photographic gear and, I’m sure she won’t mind me saying, it was hard for me to get a word in edgeways! We both enjoyed ourselves immensely in the couple of hours that we spent with Neicey and I hope she did too. I feel as though our virtual friendship has become a real world one now!

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Here are some more shots that I took as Cristian was doing his photography thing. I hope you enjoy them.

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When we start publishing Cristian’s “26 Miles” portraits in the 26 days before his marathon fundraising run, there will be a “Personal MND story” accompanying each picture, where you can find out more about the person in the photograph and of how motor neurone disease has altered their life.

Please help us to reach our target of £2,600 for the Motor Neurone Disease AssociationThe MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning and is the charity “26 Miles” is fundraising for. Please help them to help more people affected by MND by DONATING to our Just Giving page or donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Nick Owen’s just the ticket

TV personality and supporter of the “26 Miles” Motor Neurone Disease Association campaign Nick Owen will be appearing at the Palace Theatre in Redditch this week – on Thursday September 24 – talking about his experiences interviewing stars from the world of sport, entertainment and news. Tickets are nearly sold out so hurry if you want one!

You can find out more here – Palace Theatre, Box Office

Rumour has it that co-stars from his past may be in the audience (including Suzanne Virdee)! I worked alongside Nick (and Suzanne) a great many times during my 17 year career as a TV cameraman and director.

Here’s what happened as I was reunited with Nick when we visited the BBC studios in Birmingham to take his “26 Miles” portrait recently.

(click on the first image to enter a slide show of all the pictures)

It was so great to meet him again. If you can get to his show on Thursday, you’ll find him as warm and witty in the flesh as he is on TV.

Nick’s portrait will be amongst pictures of a group of celebrities who are supporting the “26 Miles” Motor Neurone Disease Association campaign. These will be published during the final 26 MND portraits in the days leading to Cristian’s marathon.

Please help us to reach our target of £2,600 for the Motor Neurone Disease Association. The MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning and is the charity “26 Miles” is fundraising for. Please help them to help more people affected by MND by DONATING to our Just Giving page or donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Groin strain after a little training session – The Great North Run

Cristian has been preparing steadily for his 26 mile MND Association fundraising marathon and at the weekend completed the Great North Run in a time of just over 2 hours. He was disappointed with his time as a few years ago ran the 13 miles in under 2 hours, but hey, we all slow down as we get older 😉

Cris Grt Nrth Run

Here he is showing off his medal. I did ask if he fancied doing another 13 miles, but he wasn’t impressed.

Afterwards the crowds were so great that he had to stand around for a long time getting cold which caused a minor groin injury to flare up.

We were worried that it would throw the marathon training schedule out of kilter, but a trip to the physiotherapist has sorted him out and his groin is now apparently working just as it should!

Nick Owen supporting “26 Miles”

I used to work closely with Nick Owen for 17 years! He’s one of the nicest people I had the pleasure of working with and in real life is as warm and friendly as he appears on TV.

Yes, that was his silhouette in my previous post (as if you didn’t know), but I thought I’d add a bit of “cheese” of the variety that used to be served at tea time on BBC regional news programmes….after all, Nick became the main presenter for Midlands Today the BBC regional TV news in the Midlands just a few years before I started at Pebble Mill.

Here’s a snap of the 2 of us having our picture taken by Cristian at the Birmingham BBC studios.

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and this is a snap of me on a snowy day working for BBC news when I worked with Nick –

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I never thought I’d get something terrible like MND. In fact, like a lot of people, I’d hardly heard of it – Just goes to show it can happen to anyone….

Keep coming back, I might just give away a few secrets of behind the scenes life at Midlands Today and BBC News……perhaps I could auction a few saucy secrets to raise cash for this campaign????hmmmm good thought 😉

Pre – photo shoot at the BBC

26miles4mndTomorrow Cristian and I will be taking more portraits for the 26 Miles project – The first will be of a fantastic lady who runs a Facebook support group for one of the rarer forms of MND. After that, we’ll be visiting the BBC where we will be meeting and photographing a “national treasure” (well I think he is!) as well as some other personalities. At the moment I can’t reveal who, but I promise it will be worth the wait to find out.

I’ll take some pictures of Cristian setting up and working, before I have to get in front of the camera myself! We’ll be publishing some of those photos on our Facebook page, Twitter and here in the next few days.

Hopefully it will be interesting to see “behind the scenes” as we create the portraits that will make up the 26 we will publish in the days leading up to Cristian’s marathon!

Our photos of celebrities and other public figures will be published before the others – on here and Facebook and Twitter – so keep visiting to make sure you don’t miss any.

We’ll also be launching this site, our Just Giving page and our campaign “officially” in the next few days (in the meantime, you can still donate here) – so watch this space!

Thanks

Miles 🙂