Portrait no.25

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25 of 26 We were absolutely thrilled when pop and rock star Kim Wilde agreed to be photographed to support 26Miles4MND. Kim is married to a good friend of Miles, the actor Hal Fowler. Close mates at school, whilst Miles went into photography and television, Hal decided to take to the stage. It was when he played the part of Cousin Kevin in the stage show of the Who musical Tommy that he met Kim Wilde who was playing Tommy’s mother. That was in early 1996. Hal proposed to Kim in June and on September 1st the same year they were married. Hal’s West End credits include Alex in Aspects of Love, Billy Bigelow in Carousel, Javert in Les Miserables and Arnaud du Thil in Martin Guerre. He’s also acted in many TV dramas as well as appearing on the big screen, most recently in Solo: A Star Wars Story. Kim is obviously most famous for her hit 1981 single Kids In America but she’s also had seven other UK top ten singles. Many of you will know she has been busy touring this year promoting her new album “Here Come the Aliens” which has put her back in the UK album charts for the first time since 1993 reaching no.21! The 26Miles4MND photoshoot took place at Kim’s beautiful 16th century barn conversion in 2015. Little did Miles know at the start of the day that he’d be playing guitar with a rock and pop legend! Slide the picture to see Hal and Miles too. To donate to the MND Association – https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

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Portrait no.24

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24 of 26 Children’s author Suzanne Maguire was diagnosed with ALS variant MND in 2002 at Sheffield Institute for Translational Neuroscience (SITraN), which has large laboratories carrying out research funded by the MND Association. Suzanne is one of the remarkable few with MND still alive and relatively mobile sixteen years after diagnosis. Miles interviewed her at SITraN where she spoke about how it made her feel to have seen scientists working in the labs on MND research. “I’ve been here twice on open days and we have walked around the laboratories and seen the Zebra Fish they use for research, had each department explained to us and what they are hoping to achieve. It does make me very emotional because they are trying to find a cure and help people like you and I live a longer life. When I was diagnosed by Professor Pamela Shaw, I hadn’t a clue what MND was. My mother Eve was sitting behind me and she knew exactly what motor neurone disease was but I had never heard of it before. It was only when Professor Shaw began to describe it in detail and mentioned two to five years average lifespan that I realised it was so serious. The penny dropped and I realised it was a lot, lot more serious than I had anticipated. Initially I just had a weakness in my arms. Making cups of tea and carrying the tea bag to the bin I noticed a weakness. To be honest I never thought anything of it but thought 'hey ho, let’s go to the doctors’ and then five months later I’m being told it’s likely I’ll be dead in less than five years. I certainly see life in a different way as it’s made me more aware of my mortality. I was thirty-six when I was diagnosed and at thirty-six you are in the prime of your life! Now every day I wake up and I’m stiff, I’m weak. I find I’m relying on my loved ones more – ‘can you carry this? Can you open this? Can you cook? Can you vacuum?’. But I enjoy the birds singing, I enjoy our countryside far more. My mortality has been questioned. You don’t have the luxury of waiting until you’re eighty years old to sell up and get that cabin by the sea". . To help the work of the MND Association donate here https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.23

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23 of 26 Anita Sharma-James is Chair of the Worcestershire branch of the Motor Neurone Disease Association, a role she does as a volunteer. Her mother died of ALS in early 2011 at the age of sixty-eight, many years after migrating to the UK from India in the 1970’s when Anita was a baby. “I grew up in Harborne, Birmingham. My dad had come over in the fifties with his father and just worked really hard, then went back to India, got married and came back. He had worked so hard that he’d earned enough in three years to buy a house outright. Then he invited my mother and I to come over. It was a very interesting childhood in the seventies. I was asked to become chair of our local branch after the previous chair resigned and one of the board had died from MND. I’d been inspired by my mother so much but I don’t think I could have done it around the time that she passed away. I needed that distance in time to get out of the way of myself in order to help others. You can’t bring your own baggage. But with that distance you bring the experience as well, and the empathy. So I thought that it was something I could do and I wanted to do it well. The MND Association is one of the most well run and well organised charities. There seems to be expertise in everything related to MND. I’m so well supported as a chair as well. Experts in every field are at my finger tips. That filters down to those with MND. It’s incredible really. To anybody with MND my advice is don’t lose heart. Don’t panic. There’s so much out there that’s going to cradle you. Stay being the person that you want to be for as long as you can. There’s a lot that can be done. To carers of people with MND my advice would be to make the best of each day and try not to worry too much about the future. You will need to have adequate support in place to be able to help your loved one. Don’t be afraid to reach out for support from the MND Association. Carers need respite. Don’t feel that you’ve got to do it yourselves.” . To help the work of the MND Association donate here https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.22

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22 of 26 Professor Dame Pamela Shaw is a big hitter in the world of MND. She was made a dame in 2014 for her internationally recognised contribution to neurosciences, and particularly through the pioneering work she leads at SITran – The Sheffield Institute for Translational Neuroscience. “The first gene that was found to cause familial MND was back in 1993 and it’s called SOD1 – Not a bad name for a disease that causes MND! That gene code is for a protein whose normal function is to scavenge the free radicals that we produce as our cells are generating energy. There are now about thirty genes we’ve found that can cause MND. A tiny change in one building block of the SOD1 gene causes familial MND. At SITran we’ve shown that if you knock out that SOD1 gene with gene therapy you can just about cure mice of MND and the mice remain fine because there are other proteins that can do the same job. We are doing a human trial. There are various ways of doing gene therapy. One, which is the method we used in the mice, is to use a viral carrier (or vector) where the virus is harmless but we put inside the viral carrier a molecule and when it gets into the nervous system it knocks down the level of SOD1. In Spinal Muscular Atrophy (SMA), which is a childhood form of MND, that viral vector has been used to knock out SOD1 in children with SMA in a US trial. Children with SMA usually die of their MND within 2 years of being born. One dose of that viral vector and those kids are now normal toddlers so it’s fantastic! It will come for adult MND as well shortly I hope. In the meantime there’s a way of injecting a substance known as ASO. A lumbar puncture injection of this and that knocks down the SOD1 gene. It’s an international study and SiTran is the UK site. We’ve been doing it for about 18 months. The first two patients that we put into the trial have been sending videos of themselves walking up the garden steps that they hadn’t been able to do for three years. I’ve done probably twenty-four new treatment trials in MND and I have never ever heard people say they have improved before in a trial.” To help donate here https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.21

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21 of 26 Jay Parker had been in his job as social media officer for the MND Association for five months when we interviewed him at their HQ, David Niven House in 2015. “MND ranks quite highly on the cruelty scale. It seems like torture to me. I couldn’t imagine having it. It has scared me and it makes me want to do things sooner in life rather than later just in case there’s something awful lurking round the corner. Since starting here I’ve seen lots of documentaries and things like that about people who have lived a normal life, quite happy then suddenly were just struck down with MND and it destroyed their lives. So yeah, it’s high up there for a terrible disease. In my job in social media we can measure success in numbers. Since the Ice Bucket Challenge the likes on Facebook and followers on Twitter have more than doubled. My goal would be to keep raising that awareness. Making sure people know what MND is. In fact I’m even doing that in my own family. I’ve only been here five months but I’ve fed back everything I’m learning in this job straight to my family – My sister and mum and dad. They’d not heard of MND either but now they feel exactly the same way as me. They all think it’s absolutely horrible.” To help the MND Association donate using this URL https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.20

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20 of 26 Belinda Cupid left a job working in cancer research as a biochemist to join the MND Association. When we interviewed her in 2015 she’d been at the Association for fifteen years and was their Head of Research. She now works at the Cystic Fibrosis Trust. “Although I had not done any research about MND before, after I got the job and started mentioning motor neurone disease to friends all these people seemed to appear who had connections to the disease. It was really staggering! I had a job working in a lab but wanted to work more with people as well as use my research knowledge. A vacancy here came up that I got and I really haven’t looked back! I meet people with MND when I go out and give talks explaining what’s going on in research. When you find out that someone with MND loses their independence and loses their voice and everything else that goes with this disease, that catches people’s attention and they want to help. That’s why there’s such a huge commitment by the staff at the MND Association. They’re always willing to do anything they can. It’s probably one of the reasons why I stayed here so long!” . To help support the work of the motor neurone disease, you can donate here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

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