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The magazine of the Motor Neurone Disease Association

Autumn 2018

Swimmers make waves in aid of MND research


For mND

GAZE COMPATIBLE

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www.mndassociation.org

, part of the

family


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Behind the scenes of The Ride Find out more about our new film and how you can support our campaign #TakeOverMND

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Reflecting on the past, looking to the future The latest news from the AGM, our trustees and new chair, Richard Coleman

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Your Stories Members share their stories of how MND has changed their lives

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Research news All the latest from the Association’s research team

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Help us to Scrap 6 months Support our campaign to change the rules on benefits by contacting your MP today

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‘She is a wonderful advocate for our cause’ A look back at some of the highlights from HRH The Princess Royal’s decade as our Royal Patron

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Thank you Celebrating the achievements of our amazing fundraisers across England, Wales and Northern Ireland

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, David Niven House, 10-15 Notre Dame Mews, Northampton, NN1 2BG Reg. charity number 294354. Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2018.

welcome… In my five years as chief executive of the MND Association I have been constantly impressed by the great lengths the MND community goes to, particularly when it comes to raising awareness. Whether it’s through campaigning, sharing stories, taking part in countless events, or simply collecting money in a town centre, it’s impossible to measure just how important raising awareness of MND, and the work of the Association itself, actually is. We also understand how important awareness is to our members, many of whom face the cruel reality of living with MND and want the public to know the immense impact it has, not just on them personally, but their families too. The pages of Thumb Print are filled with the stories of those who do extraordinary things to raise awareness of MND and in September I was inspired to join them again, taking part in a Walk to D’Feet MND alongside my fellow directors. Together, we walked 17 miles across London from Kings College to the Royal Free Hospital visiting research and care centres en route. It was an amazing experience and we were extremely fortunate to be able to meet so many of our clinical and research colleagues, all of them dedicated to caring for people living with MND while the search for a cure continues. We were also delighted to have raised £1,360, so a big thank you to everyone who supported us. People living with, and affected by MND, have also been at the heart of developing our latest awareness campaign, #TakeOverMND, which launched in September. Thanks to the support of our interest group, which included two people living with MND, members of staff, volunteers and trustees, the Association has developed a powerful new campaign featuring digital posters as well as a short film called The Ride. The posters show an image of a mum dropping her children off at school, illustrating how MND can change family life forever, while the film centres around Luke, a man struck down by MND in his prime, bringing to life the turmoil he faces as he fights to come to terms with his diagnosis. It’s a bold campaign, but one which we believe is necessary if we are going to raise awareness and attract more support in the months and years to come, particularly as we look ahead to our 40th anniversary next year. We have been overwhelmed with the support the film has received so far and I would like to thank everyone who was involved in its development. If you haven’t seen it yet, please take a moment to visit our website, www.mndassociation.org, where you will find more information about the film and the #TakeOverMND campaign. In the meantime, I would like to thank you for supporting the Association during 2018 and wish you all a peaceful new year.

Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint Sally Light Chief Executive

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New film shows the rollercoaster journey of living with MND Behind the scenes during filming of The Ride

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NEW awareness raising film, which tells the story of one man’s journey with MND, has been launched by the MND Association. Called The Ride, the film tells the story of Luke, a man in the prime of his life celebrating his 38th birthday surrounded by his friends and family, including his wife and young children. The party is full of love and laughter as they make plans for the future, including a family holiday. Then suddenly, without warning, Luke’s life changes forever. He finds himself on a dramatic rollercoaster ride and special effects are used to reflect the emotional turmoil he faces after being diagnosed with MND. In the final scene, it is two years later and Luke is shown marking his 40th birthday, sadly now in a wheelchair, unable to speak to guests or unwrap his daughter’s gift.

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The Ride forms the centrepiece of the Association’s new awareness raising campaign which launched in September.

“Motor neurone disease pulls no punches and that’s what we believe The Ride does by putting the viewer in the position of someone who is living with MND” Our members, including those living with, and affected by MND, have been involved at every stage of the development of the campaign, together with staff, trustees and award-winning creative agency Don’t Panic. The Ride marks a new, bolder approach to awareness raising and it is hoped it will encourage more people to support the Association’s work. David Setters was diagnosed with MND

in September 2012 and has been involved with the project from the start. He said: “MND hits a family like a bombshell. It’s devastating to all concerned. In most cases progression is so quick that you can’t keep up with the changes unless you get the right help at the right time. You can spend so much time trying to get that care in place that you can forget to make the most of what is left of your life with your loved ones. The Ride shows what MND takes away from you. Most importantly, it clearly illustrates Luke’s deterioration which is swift, out of control and not only affects him but everyone around him.” Director of external affairs Chris James said: “Motor neurone disease pulls no punches and that’s what we believe The Ride does by putting the viewer in the position of someone who is living with


What else are we doing?

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hile The Ride is the centrepiece of our campaign, we are also running other activities targeting different audiences. Adverts encouraging neurologists, speech therapists and other healthcare professionals to talk to people living with MND about voice-banking have been shared across NHS internal communications channels. And during September you might have seen our Motor neurone disease takes over lives… digital posters at around 300 sites across England and Wales and on Facebook in Northern Ireland. The posters depicted a back to school scene with a mum dropping off her children. Bold orange and blue tape then covers the mum’s face reflecting the way MND takes over lives. A number of people have already been in touch to let us know they have spotted the poster in their town and said they felt the posters accurately reflected the devastating impact MND has had on day-to-day family life, including the school run. What do you think about our campaign? Send your comments to clare.brennan@mndassociation.org

How you can get involved

Luke pictured celebrating his birthday

Luke pictured with his wife and young daughter

MND. Unfortunately, that is the reality of the disease – any one of us could develop it at any stage of our adult lives.” The Ride has been rolled out across social media and online platforms backed by

online and offline media activity as part of our #TakeOverMND campaign. To view the film and find out more about how you can get involved in our campaign visit www.takeovermnd.org

We’re asking everyone involved with the Association to use our rallying call #TakeOverMND to encourage others to join us. Perhaps your group could take over a village hall and run a day of fundraising events? Or maybe your workplace would splash images of the distinctive orange and blue #TakeOverMND tape across the back of their vehicles? Could the orange and blue tape become the ‘new’ bunting? We’d love to see how you’ve used #TakeOverMND to get family, friends and networks involved. You can visit www.mndassociation.org/ takeovermndassets to download our branded material.

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Reflecting on the past, T

HE MND community came together to say goodbye to outgoing chair of the board of trustees Alun Owen at the Association’s AGM and conference in July. Alun, who became chair in 2014, stood down at the AGM, which was held at the Radisson Blu Hotel at East Midlands Airport on 14 July. He told the audience of 130 delegates he was proud to have played an integral role in the work of the Association, adding that he would continue to be involved as a volunteer for the Merseyside Branch. Incoming chair, Richard Coleman praised Alun for his ‘dedication and calm leadership,’ adding that it was a huge privilege to be taking over after seven years as a trustee. Retiring trustee Lindsey Lonsborough also stood down while newly-elected trustees Dr Peter Scott-Morgan and Alan Graham took up office. During the day, the Association’s chief executive, Sally Light, reflected on the work of the Association during the past year and outlined her commitment to keep on doing everything possible to improve the lives of everyone affected by MND, while continuing to fund worldclass research. Keynote speaker, Prof Martin Turner, from the University of Oxford explained more about his work around biomarkers and how his research aims to shorten the amount of time it takes to make a diagnosis as well as making drug trials more efficient. The 2019 conference and AGM will be held on 13 July at the Radisson Blu Hotel at East Midlands Airport and full details of how to register will be available in Thumb Print nearer the time. If you were unable to attend the conference and AGM in person you can still catch-up online at www.mndassociation.org/videos

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t, looking to the future Want to visit Venice, swim with dolphins or fly a fighter jet? Virtual Reality can make it happen

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ISITORS to the Association’s conference and AGM had the chance to take in the wonder of the Northern Lights, the Grand Canyon and wander along the streets of Paris without the need to travel, all thanks to one of the event’s exhibitors, Flix Films. During the day, Flix Films’ managing director, Leon Ancliffe and his colleague Beth were on hand to help people living with MND experience some of the world’s most amazing sights all thanks to the way they utilise Virtual Reality software and their headsets.

“I have always wanted to see the Northern Lights, the colours were just so vibrant and beautiful and I felt as though I could reach out and touch the lions.” For Ann Franklin, who is living with MND and uses a wheelchair, pictured, the experience gave her the chance to see the natural beauty of the Northern Lights, something she had always longed to do, as well as getting up close to a pride of lions. She said: “I have always wanted to see the Northern Lights, the colours were just so vibrant and beautiful and I felt as though I could reach out and touch the lions.” Creating memories for people living with MND, and other terminal conditions, has become a real passion for Leon. It was while he was working for the MND Association on a short film called Understanding MND that he first met Sarah Ezekiel, who is living with MND. He explained: “I thought Sarah was inspiring and during filming, I spoke to her a lot about Eyegaze and how it worked. During one of our conversations she said she would have loved to have

been able to swim with dolphins.” Inspired by Sarah’s story, Leon went away and sourced a Virtual Reality experience to help her fulfil her dream. It was a moment he says he will never forget. He said: “Afterwards, Sarah said it was the first time in 16 years that she had felt able-bodied – it was a beautiful moment.” Since then, Leon and his team have increased the range of experiences

available and have developed a variety of custom virtual reality content ranging from tours to virtual reality training scenarios, using advances in technology to make the experience as immersive and unrestricted as possible. He said: “To give someone the chance to experience something they wouldn’t usually be able to is just an amazing gift. It’s very exciting.” To find out more about Flix Films, visit their website at www.flixfilms.com

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New trustees are elected to the Board Scientists Dr Peter Scott-Morgan and Alan Graham MBE have taken up their posts on the Association’s Board of Trustees. Peter and Alan were both elected to the Board by members in June and formally took up their roles at the Association’s conference and AGM in July.

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eter, who was diagnosed with MND in November last year, said he was keen to explore the use of technology and the ways it can be used to support those living with MND.

“This is the age of hi-tech and there are huge benefits in exploring just how people living with MND can benefit from all the billions being spent by the gaming industry on virtual reality” He said: “We’re now well into the 21st Century. This is the age of hi-tech and there are huge benefits in exploring just how people living with MND can benefit from all the billions being spent by the gaming industry on virtual reality, the automotive industry on driverless cars, the computing industry on expressive voice synthesisers and so on. It’s all potentially life-changing for those of us with MND.” He also said his scientific background

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lan first became involved with the MND Association’s 26 years ago when his mother was diagnosed with the disease. He has been a trustee for more than 15 years and was chair of the Board of Trustees for six years between 2004 and 2010. He was also the Association’s appointed director on the board of the International Alliance of MND/ALS Associations for 10 years until 2010.

“I continue to believe passionately in the organisation and look forward to contributing further in any way that I can” Alan was a founder member of the North West London Branch, of which he is still honoray treasurer and his wife, Jenny, is an Association visitor. Alan’s post-retirement life comprises

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Dr Peter Scott-Morgan pictured with chief executive Sally Light and chair of the Board of Trustees Richard Coleman

had helped him cope with his diagnosis. He explained: “I draw immense strength and comfort from my exceptionally deep faith in three things – science, because if anything can improve my life with MND, it can; humanity,

a portfolio of non-executive and trustee roles in the public and voluntary sectors and includes membership of the Board of the Parliamentary and Health Service Ombudsman, whose audit committee he also chairs, and the Board of Trustees of Peace Hospice Care in South West Hertfordshire. Alan was awarded an MBE in 2011 for services to the voluntary sector and the MND Association. He said: “There has been huge change over the years, particularly surrounding governance and what we are able to do to help people living with MND. “The level of support we now have and the awareness we continue to raise, both of the organisation and the condition, have both grown exponentially and it is always tremendous to see researchers from around the world coming together and sharing their work at the International Symposium on

because despite our supreme stupidity at times, together we’ll work things out – for MND and lots of other things too and love, because when all else fails unconditional love is one of the greatest forces in the universe.”

Alan Graham MBE

ALS/MND. “I continue to believe passionately in the organisation and look forward to contributing further in any way that I can.”


“It’s a privilege to be part of the MND family”

Richard Coleman, chair of the Board of Trustees

“I

first became aware of MND in early 2004, when my wife, who was working as a nurse in a local hospital, was tentatively diagnosed with the disease. What she had initially thought was arthritis, a condition which her aunt had suffered from for many years, soon proved to be way more debilitating. Visits to neurological clinics, accompanied by some often quite uncomfortable tests, confirmed our worst fears. Our first experience of the Association, came in the form of a call from our Association visitor, and I will always be grateful for the support and advice we received from her, as well as our local branch, over the next two years. Those two years were far from easy, as I know many of you will understand, but my wife set the tone for them in what she wrote in her diary the day after her diagnosis was confirmed, ‘Today is the first day of the rest of my life.’ “To now find myself as chair of this amazing charity, and to be able to offer support to those who find themselves facing the same challenges as my wife and I did, is an immense honour for me. I feel privileged to be able to work alongside a great team of fellow trustees as well as with Sally, her team of directors, their staff, and most importantly, with you – our members. “In September, I was able to meet some of you at the Association’s first regional conference in Northern Ireland as well as many volunteers, supporters and fundraisers who do tremendous work to support people living with MND across the region. While I was there, I was reminded once again of the great sense of family which exists among us all, driving us forward and spurring us on as we continue to fight for a world free from MND. “By working together and nurturing this strong sense of unity, I know we will continue to achieve much more on behalf of people living with MND and all those who care for them, both in the coming year and beyond.”

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Play our biggest ever Christmas raffle and help those living with MND

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UR Christmas raffle is back, and this year the prizes are bigger and better than ever! The winner of this year’s festive fundraiser will take away £5,000, while our second prize winner will collect £1,000. Our third prize is £500 and ten runners-up will each receive £20. Best of all, by taking part in our Christmas raffle you can help improve the lives of people living with MND. Each ticket costs just £1 and the more that are sold the bigger difference we can make for people living with MND. Taking part couldn’t be easier. Simply visit www.raffleentry.org.uk/ mnda to enter online or call our ticket hotline on 0345 6016 936. You can also order books of tickets to sell to friends, family and colleagues by emailing raffle@mndassociation.org. The raffle closes on 13 December and the lucky winners will be drawn on 20 December. We would also like to thank all of our members who entered and sold tickets for our summer raffle; you helped raise an incredible £86,000 to support people with MND and their families. Congratulations to the summer raffle prize winners including Helen Everton who won the first prize of £4,000, Sharon Oaten who won £500 and Mary Kitching who won £200. For the full list of winners, please visit www.mndassociation.org/raffle Regulations mean entry is open to all UK residents excluding Northern Ireland, Jersey, Guernsey and the Isle of Man. Tickets are not for sale to or by anyone under 16 years of age.

Film star patron drops in for charity screening

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ILM star Lily James took time out from promoting her hit film Mamma Mia! Here We Go Again! to attend a special charity screening of the film. Lily, who is patron of the North London Branch, attended the special event, which was held at the Phoenix Cinema in East Finchley on 22 July and also hosted a question and answer session at the end, much to the delight of her many fans. Committee member, Tina Di Fruscia said: “Lily stayed for the whole duration of the event and did not disappoint. The meet and greet and photos went on for almost four hours and far exceeded any of our expectations. She is such a hands-on patron and was so kind, patient and generous with her time for every single person who attended. We are so honoured to have her as our patron.” For more news from our branches and groups turn to pages 34 and 35

www.raffleentry.org.uk/mnda Ticket hotline 0345 6016 936 Film star Lily James pictured with members of the North London Branch

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yourstories

“MND: In my own words”

Phil Wathall was diagnosed with MND in 2011 at the age of 47. Here in the first of a series of articles he describes how he heard about MND for the first time.

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HE first time MND reared its ugly head was without me really recognising it. “Many years ago, as a young man at work, I found myself on my tea break talking with some colleagues about a gentleman called Stephen Hawking. The fact that he had just written a book called A brief history of time and also that he was in a wheelchair with a synthesized voice and a computer on his knee. In those days computers were just coming out and not that commonplace. One of the guys asked, ‘What’s the matter with him.’ A reply came, ‘I don’t know but he’s clever and he’s got a computer.’ No-one knew what was wrong with him but he was talked about many, many times after that, although still not knowing what his disability was.

“Little did I know these were the first symptoms of motor neurone disease knocking on my door.” “We can put that down to the lack of awareness of the late eighties and early nineties, but years later there are still many people who don’t know what Stephen Hawking had, or about MND. The second time MND reared its ugly head “After working a night-shift I would go to sleep until dinnertime, when I would wake up and go about my daily business. “I remember waking up in a darkened bedroom with the light coming round the sides and cracks of the curtains, lying there before the big push to get up to go to make a cup of tea before getting on with my busy life and thinking, ‘What is motor neurone disease?’ “Not knowing where I had heard these words, or what they

meant, I decided in my head to work it out. Motor – to do with cars. This is the body, so it must be to do with what moves you; Neurone – not a clue; Disease – something you catch? Tell you what, I’ll get up, wash, dress, go downstairs, make a cup of tea, switch the computer on and Google it. Guess what? Somewhere between getting up and the kettle, something else came into my head and I forgot all about it. The moral to this story is that most people go about their daily lives not realising what could affect their future. “The third time MND reared its ugly head was on a trip to Australia in 2008. “On the day we left Sydney to continue our road trip back to Brisbane with a group of friends, one of our party wanted to visit the Hard Rock Café to pick up a trinket for her work colleague. Before we left the hotel, a walking route was chosen of how to get there, taking us through a suburb of the city. What a beautiful day to walk through this lovely park! I remember passing a couple of people standing behind a small table, which had banners with the words ‘motor neurone disease’ wrapped around it and my daughter, Rosie, saying to her mum, ‘What’s motor neurone disease?’ “The fourth time MND reared its ugly head was the start of my journey. “Out walking with our dog Molly one weekend we noticed I was walking a little strangely. I was wearing heavy walking boots and my left foot was making a distinctive slapping sound when put on the ground. How strange, as when I put my normal every day shoes on it went away. We put this down to a combination of my walking boots and the slopes we had been walking on. “Little did I know these were the first symptoms of motor neurone disease knocking on my door.” www.mndassociation.org

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yourstories

“Hospice staff were won In the spring edition of Thumb Print, Stephen Bluff, who is living with MND, shared his experiences of hospice care. Since then, we have been contacted by many readers, all eager to share their stories of how hospices have helped them. Here, reader Colin Brain explains how the care and support he received at Salisbury Hospice will never be forgotten.

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hen Sylvia and I sat down for our first meal together neither of us realised it would be the start of a love affair that would make few concessions to our advancing years. “We had been neighbours for over 40 years. Sylvia’s husband Tim, who had been suffering from cancer, had died in Salisbury Hospice about ten years earlier. My wife Sue had also died of cancer in Salisbury Hospice, but that had been only weeks before and I was trying to come to terms with her loss after 47 years of marriage. “Our meal together had come about almost by accident. Days before, Sylvia had taken in a parcel for me. When collecting it, I mentioned I was organising an event and asked if she wanted to come along. She couldn’t, but as she seemed disappointed, I suggested she join me in the evening to help eat up the leftovers from the event lunch.

Sylvia and Colin at their wedding

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“As things developed, we were both concerned it was too soon after Sue’s death for me to start another relationship. Fortunately, Sue had told me that as soon as she had gone I must make a clean break and find someone new. She had been diagnosed with breast cancer in her late 50s. After we had safely got through the first round of surgery, chemotherapy and radiotherapy she tried to make sure I would be able to manage on my own. In fact, we were given another 11 years of very happy marriage before cancer finally took its toll. “I remember the day Sue went into Salisbury Hospice. She had been on a cancer treatment ward in the main hospital and was becoming increasingly troubled. She did not want to waste any more time being treated and knew it was nearly time to go. At the time, I had little idea about hospices or the detailed workings of hospitals,

so sought an urgent appointment with our GP to try to find a way forward. After some discussion, our GP suggested we talk to the Macmillan nurse at the hospital because she knew all the staff involved. After that, things moved quickly and it was only hours before Sue was on her way to the hospice at the opposite end of the site. She had originally said she would like to die at home, but that changed and she was happy to stay in the hospice with its wonderful caring staff. I slept there for a lot of the time and was with her when she died. The staff were very kind to me as well. This was all fresh in my mind when Sylvia and I had this meal together. “A couple of months went by and Sylvia had a fall in her living room. She was not hurt, but she mentioned it to her GP some weeks later. As a precaution, he referred Sylvia to


yourstories

onderful and caring” see specialists and so we began a round of out-patient visits at the hospital. After Sue’s death I had been approached to join the hospice’s user group – an invitation I had gladly accepted, despite some misgivings about how I would feel going back to the building. The group had been set up to provide feedback to hospice staff. My misgivings were unfounded and I felt very positive about going back, helped no doubt by the lovely ambience.

“During all this time Sylvia was fantastic – determined to be as positive as she could despite the increasing frustrations involved.” “On one of these out-patient visits, Sylvia had been called in to see the consultant and I was startled to hear a nurse call my name. I followed her into a side room to find Sylvia in tears. She had just been given a probable diagnosis of MND. We were used to taking one day at a time, but now we had to try and make sure every day counted. However, as MND began to bite, mobility, eating, drinking and talking were starting to become more difficult for Sylvia. It was time to do some serious thinking about my future. Yes, the experience with Sue had made me stronger and yes, I could cope. What better way of doing this than to make a marriage vow to love and honour Sylvia ‘till death do us part.’ Sylvia was delighted and so we began to plan for our wedding. It was a lovely day. “Many reading this will be familiar with the rounds of appointments and the increasing need for equipment and supplies to support continued living at home. It seemed as though each new addition brought with it an increase in my workload. I was so glad that I had made a positive decision to care for Sylvia, rather than just drifting into it. My list of specialist contacts has 27 entries and I am sure some have been missed out. However, the big difference from the previous time with Sue was the amount of co-ordination between them all. It started with the consultant’s multi-

disciplinary team (MDT) and flowed down to the community neurological team and to virtually all the specialists involved. This meant that most people we dealt with knew exactly what was happening with Sylvia’s care and came fully briefed. Sylvia and I met regularly with hospice staff for a year before she was admitted and this led to a timely offer of a day-centre place. Although usually a little reluctant to go, Sylvia enjoyed the day, with its mix of crafts, a short holy communion service, complementary therapy and other varied activities. For me it was great because it gave me free time knowing that Sylvia was well looked after. One member of the consultant’s MDT team was the MND Association visitor and it was good to finally make contact with her. The hospice also ran an excellent carer’s training course. We still tried to live life as fully as we were able and celebrated monthly wedding anniversaries, just in case we did not make the full year. “During all this time Sylvia was fantastic – determined to be as positive as she could despite the increasing frustrations involved, such as not being able to wipe her own nose. Bursts of laughter were more frequent than bursts of tears, though naturally the balance began to shift as her condition progressed. Despite the best efforts of our speech and language therapists, communication became more of a problem. Even trusty pen and paper eventually became too difficult. A Valentine card to me was the last thing she wrote. “Early on we had both written wills and registered lasting powers of attorney. In her guidance to her health and welfare attorneys, Sylvia had written that she wanted to die at home or in the hospice. She was keen to remain at home for as long as possible, partly I think because she was very fond of her west highland terrier, Codie. We became reliant on an increasing amount of carer support, culminating in having live-in carers. I was delighted when the hospice offered us night-time sitters. I was still called on a number of nights, but it was a great comfort to know there was a nurse

watching over her. Then the call came through to ask if I thought Sylvia would like a hospice bed. Initially, she said, ‘No, thank you’ but when the same question was asked a week later the situation had changed and it was an eager, ‘Yes, please’. In no time, the staff had made Sylvia comfortable. Once again, I was made very welcome and included in discussions on her future care. “Sylvia had been admitted to the hospice on a Monday and died peacefully in her sleep on the Thursday morning. Coincidently, Sue had also gone into the hospice on a Monday and died on a Thursday morning, but her stay had been longer.

Sue and Colin in Vancouver for their 40th wedding anniversary

“Do I regret that Sylvia went into the hospice for those last few days? No, I don’t. If she had stayed at home and the NIV machine had failed I would have never forgiven myself. The hospice staff and their care for Sylvia were just as special as they had been for Sue two-anda-half years earlier. In fact, some of the nurses were the same. “When Sylvia and I had that first meal together she voiced her concern that it might be too early to get together and that in time I would regret it. As always, her first thought was for others rather than for herself. However, she had gladly accepted my assurances and I still have absolutely no regrets. Sure, I am now grieving after two lovely ladies, but that serves to remind me of what I am grieving about and the lives and loves that we shared right through to those memorable final days in Salisbury Hospice.” www.mndassociation.org

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Katy’s siblings, pictured before and after their head shave which raised more than £6,000

Community shows its love for Katy and her family A

COMMUNITY in Devon has come and would move immediately to the breathing together to show its love and support mask as soon as the front door had closed.” for a family who lost their much-loved Maria said she had asked a number of friends wife, mother, sister and friend to MND last for three words to describe Katy and soon September. found there were some recurring themes. Mum-of-two Katy Jones was just 51 when She said: “She was described as kind, funny, she was diagnosed with MND in November generous, hard-working. One former colleague 2016 after first experiencing symptoms while told me that Katy had made her believe in on holiday in Turkey with her husband Mark, herself, another said she had a skill in bringing earlier the same year. After returning to work, together very different people. She was hugely she complained of feeling tired and clumsy and energetic and enthusiastic about life; she was in June, had a serious fall which left her unable one of those people who was always there to get up. After a full medical check-up, she was when you needed help. If you had to move a sadly diagnosed with MND. wardrobe, dig the garden, paint a room or walk In the months that followed, her beloved the dog, just ask Katy!” family, including her children, Megan and Rhys Maria explained that Katy’s husband Mark and four siblings, Karen, Andrea (Andy), Maria and her children had always been at the centre and Pete, surrounded her with love and care, of her world. spending as much time with her as possible, She said: “She was the ultimate ‘mum taxi’, before she died on 25 September 2017. Since taking both the children to 6am swimming Katy, pictured days before she sadly died in then, the family has been overwhelmed by classes three mornings a week, plus evening September last year the kindness and generosity they have been training sessions and weekend galas. In her last shown by the people of Teignmouth, who have continued to month, she just wanted time with Mark and the children, so the support the family as they raise money for the Association in family stayed very close together until she died on 25 September. Katy’s memory. Two days earlier, she had sent a last message out to her friends, a Maria said: “The first thing Katy said to me after she was photo of herself on Facebook sipping a mini bottle of Champagne diagnosed was that she was determined to live with MND, not through a straw with a slightly cryptic quote: ‘Smoke me a die from it. Unfortunately for our brave sister, she did not have kipper and I’ll be back for breakfast.’ Many friends recognised the very long as it progressed rapidly and took everything from her reference from her favourite sci-fi show Red Dwarf and understood quickly. She tried hard to protect her friends and loved ones from it was a goodbye, so the news of her death was not unexpected.” the disease. As it progressed, she would gather her strength to After her death, Katy’s family, led by her three sisters and brother, talk to visitors who went away feeling cheery and happy, but decided they wanted to show their support for the MND Association after they left, Katy would be in a state of complete exhaustion by setting up The Katy Jones Tribute Fund in her memory.

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Maria said: “Andy first heard about the Tribute Fund and felt it would be a really useful thing to do. She saw the fundraising as part of a long-term healing process and was keen to start immediately. Pete and Karen both felt they needed time before they did anything, but she convinced me to join in, and we gradually brought the other two along. “We had no problem setting up the Tribute Fund. I find it very helpful, looking at the messages and being able to light a candle for Katy or share a thought.” One of the first events the family held was a bag pack at Waitrose in Teignmouth shortly before Christmas. Andy knew many of Katy’s friends and colleagues were keen to help, so encouraged them to wear MND Association t-shirts. Andy said: “Supermarkets often want to limit the number of people helping at these events, but we organised a blue army of 43 people to help throughout the day! The event raised £2,100, which was amazing as we were told to expect about £700. It was highly emotional, but the people of Teignmouth were amazingly generous and we all found it very healing. Many of the helpers felt the event was the highlight of the Christmas season.” Following their success, Katy’s siblings decided they wanted to come together to take part in a sponsored head shave and decided to do it publicly. Andy said: “I thought it would show how much Katy had meant to us all. It took a bit of time persuading the others as we are all in our late 50s and 60s, but I eventually got them on board. I asked the council if we could use The Triangle, a public space in the centre of Teignmouth and a councillor suggested we should have refreshments. We ended up with a fete and a fire engine! Tesco sent its community team to give out free fruit and Morrison’s provided most of the prizes for the tombola. Friends ran stalls and a choir came to draw in the crowds. We had lots of support from cafes who made cakes and around 36 businesses supported us either through direct donations or by providing prizes for the tombola. “We were all dreading the head shave, but it was actually very uplifting. The crowd was fantastic and gave us lots of support.” In little over a year since Katy died, the family, with support from the wider community, has raised an incredible £17,351 on behalf of the Association, with money from the head shave, which has already raised more than £6,000, still coming in. Andy said: “We are overwhelmed by the support we have had

from the people of Teignmouth in memory of our wonderful sister, who was very well known in the town. So many people have said to us, ‘I don’t normally give to charities, but this is for Katy.’ All of us have had people walk up to us in the street and hand over £10 notes as they felt they wanted to do something to celebrate her life.” For more information about Tribute Funds visit www.mndassociation.org/tributefunds or call 01604 611864.

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‘Understanding MND is crucial in researching new treatments’

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y name is Daniel Solomon and I have recently completed my MND Association-funded PhD at Kings’ College London under the supervision of Dr Frank Hirth, which allowed me to study the reasons why motor neurons die in MND. Understanding what causes the disease to develop is fundamental in researching new treatments. “Recently, alterations in the gene C9ORF72 were identified in a high number of MND cases and it currently represents the most common genetic abnormality in the disease, being found in around 40% of people with inherited MND. These genetic alterations cause excessive repetition of a section of the C9ORF72 protein that can accumulate in nerve cells and cause them to die. The reason for this is unknown. “My project established a fruit fly model of these genetic alterations in order to study how the C9ORF72 protein repetitions might lead to the loss of neurons in MND. The motor impairment and subsequent neurodegeneration of the flies were dependent on the levels and type of the C9ORF72 proteins, with some causing severe changes in the flies’ motor performance. “As the highly toxic C9ORF72 protein also causes the ‘build-up’ of TDP-43, a protein which accumulates in motor neurons and causes their degeneration, this work has

“My PhD was a great experience which allowed me to develop myself as a researcher and do exciting science, fuelling my passion for research into MND”

Daniel Solomon

provided a direct link between these two important proteins and their association with MND. We also found that the C9ORF72 protein caused an accumulation of ‘transport’ proteins, important for regulating the movement of TDP-43 within the cell, with similar findings observed in patients’ brain tissue. Targeting these ‘transport’ proteins as potential treatment targets can directly guide clinical research and the development of strategies for the

treatment of MND. “My PhD was a great experience which allowed me to develop myself as a researcher and do exciting science, fuelling my passion for research into MND. I have now successfully passed my oral exam and am currently continuing to research MND as a post-doctoral researcher at King’s College London, with the aim of improving our understanding of MND and finding an effective treatment.”

Annual Symposium is heading to Glasgow

G 29th international

on ALS/MND

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LASGOW is the venue for the 29th International Symposium on ALS/ MND which is taking place from December 7-9. Organised by the MND Association, the Symposium is the largest event of its kind in the world, bringing together leading researchers, healthcare professionals and clinicians. Last year’s event in Boston, USA was the largest in the Association’s history with more than 1,200 delegates attending.

Work on the 2018 Symposium began in January and to date, a record number of 850 people have already registered to attend. A full programme, as well as full information about our speakers, is now available to view online at www.mndassociation.org/symposium. You can keep up to date with events at the Symposium on our website or via Twitter by following @mndresearch or by using the hashtag #alssymp


A precious gift that could help MND Research This article contains sensitive information about tissue donation which some readers may find distressing

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eople with MND play a vital role in scientific research by taking part in studies to improve our understanding of the disease and to find treatments that will halt or stop the disease altogether. We are always extremely grateful for their support. There are many ways to get involved, such as through questionnaire-based studies, by donating biological samples to study biomarkers, taking part in clinical trials or by donating their brain and spinal cord after death, something the Association’s research team is frequently asked about. Unlike organ donation, where organs or tissues are donated directly to help another individual through a transplant, brain and spinal cord tissue is used for research and education. The donation of this tissue – whether it is from people with MND, or those who are unaffected - is a precious and unique gift. By examining tissue from people without the disease, researchers can make comparisons between healthy and diseased tissue and spot the damage caused specifically by MND. Ultimately, it is hoped that work of this kind will lead to more accurate diagnoses and better and more effective treatments.

Three steps to tissue donation Anyone considering tissue donation should first make a plan to allow enough time to discuss their wishes with their family, next of kin and healthcare professionals. There are three important steps to follow:

a tissue bank can change their mind at any time without giving a reason. 2. Once a decision for tissue donation has been made, appropriate consent will need to be provided by the tissue donor themselves, next of kin or a legal representative, and witnessed by a healthcare professional. 3. Let your family, friends, carers and doctors, including your GP, know about your decision. Family members may need time to discuss the issue with you. It is important to remember that while arrangements for tissue donation can be made after someone’s death, it is not always possible to do this in time as the tissue needs to be collected less than 72 hours after death.

Can I take part in research as well as being an organ donor? Due to logistical issues, it is not usually possible to donate brain and spinal cord tissue for research and organs for transplant at the same time. If a person with MND wishes to donate tissue for research but carries an organ donor card, or is registered as an organ donor, this may cause confusion at the time of death. It is important that the individual’s wishes are made clear to help avoid difficulty for the family at this sensitive time. Often, however, organs from people with MND are not accepted for transplant, and a wish to do so should be discussed with a healthcare professional.

More information

1. Contact the nearest tissue bank to register interest. There are several of these around the country and they are specially licensed to carry out retrieval of tissue for research purposes. Anyone who has registered with

For more information about tissue donation, and an overview of UK tissue banks, see our Research Information Sheet I: Tissue Donation, or contact the Research Development Team at research@mndassociation.org or 01604 611880.

MND Register News Update

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he MND Register of England Wales and Northern Ireland now holds data about more than 930 people living with MND. Funded by the MND Association and supported by the Betty Messenger Charitable Foundation and an anonymous family trust, the Register is the first comprehensive source of information collected by experts about people living with MND. Pioneered by MND Specialists Professor Ammar Al-Chalabi of King’s College London and Professor Kevin Talbot of Oxford University, the MND Register aims to: • C  ollect information about people with MND, to understand more about why certain people are vulnerable to the disease

• F ind out precisely how many people currently have the disease and how this is changing over time • E stablish where people with MND live, to help improve care in those areas • C  ollect detailed information about the disease to detect patterns of change in incidence and outcomes. If you would like more information about taking part in the MND Register of England Wales and Northern Ireland please visit the website www.mndregister.ac.uk alternatively you can email mndregister@kcl.ac.uk or call Oxford 01865 227 714 or KCL 0207 848 5258

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Silence Speaks louder than words

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N TOWNS and cities across England, Wales and Northern Ireland, people have been falling silent to raise money for the Association as part of Silence Speaks. Throughout the year, our amazing supporters have been taking part in sponsored silence events to raise awareness of MND and the difficulties people living with the disease can face when their speech becomes affected.

Astrid pictured with her dad, Derek

Not being able to speak has a huge impact. People have been really generous and supportive, so it’s been really worthwhile. I raised an incredible £2,810!” Peter Hogg also took part in a 24hour sponsored silence on Global MND Awareness Day in June. His friend, Chris has been living with MND for the past two years. Peter said: “Chris is doing remarkably well considering, but often he has difficulty with his words and I know that the prospect of the condition worsening and causing him to lose his voice completely is really terrifying.” Peter’s friend, Kellie Saul, also agreed to join his challenge and together they raised more than £1,300. Taking part in Silence Speaks is simple and will help us to continue making a positive difference to the lives of those affected by MND. For more information visit our website: www.mndassociation.org/silencespeaks

One of those who took part was Astrid Hartland who fell silent for 24 hours in July. Her dad Derek was diagnosed with MND in November last year. She said: “He has now lost the ability to speak, eat and drink. They were three basic things he probably enjoyed most in life and that we take for granted. I miss just talking to him so much, so I wanted to share Dad’s experience to raise money and awareness. “I mostly used a tablet and a free ‘text to speech’ app but found that harder. It was much more difficult than I imagined but I got great support from my family, friends and colleagues at Nestle Confectionery.

Peter taking part in Silence Speaks at work

Maryam, who is six, has raised more than £4,000 with her family

Supporting those with MND is the icing on the cake

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T’s autumn, The Great British Bake Off is back and there has never been a better time to brush off your baking skills and host a bakeit! sale. Throughout the summer our fantastic bakers have been busy cooking up all kinds of delicious treats to raise as much money as possible for the MND Association. Among those getting involved this year is Debbie Burrells, who is living with MND. She has been busy promoting bakeit! events and encouraging family and friends to hold cake sales in various venues across the country during October, as well as supporting Silence Speaks by filming a weekly vlog to tell her story. To find out more about bakeit! visit www.mndassociation.org/bakeit For more stories about bakeit! turn to pages 34 and 37.

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Every Breath campaign fights for better respiratory care

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CAMPAIGN called Every Breath has been launched by the Association to support people living with MND in Sussex who are currently being forced to travel up to 140 miles to access vital respiratory care. The Non-Invasive Ventilation (NIV) service was created three years ago, with input from experts at the MND Association, to ensure people living with the MND – as well as other patients coping with on-going respiratory issues – were able to access comprehensive assessments and care in their own homes or local centres. A three-year contract to provide the service was awarded to Brighton and Sussex University Hospitals NHS Trust, East Sussex Healthcare NHS Trust and Western Sussex Hospitals NHS Foundation Trust.

Minister for Care, Caroline Dinenage meets representatives from the MND Association

appointment, not wanting to miss out on the care and specialist advice she needs as the disease progresses but worried about making the trip. The Every Breath campaign is calling for the service to commence as originally commissioned, or for urgent interim arrangements for home-based respiratory care to be developed without delay so people like Liz can access support without leaving the county. Tony Lloyd MP meets Brian Jackson

Rachael McClean MP speaks to carer Jessica Devnani

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“Having MND is challenging enough without having the hassle of travelling all the way to St Thomas’ to have my respiratory issues looked at” As an interim measure, people living with MND are being offered respiratory assessments and monitoring appointments at the Lane Fox Unit in London – around 70 miles away. Since January, 23% of MND patients in Sussex have declined referral to the unit because it is too far to travel. Liz Currier, who was diagnosed with MND in March 2015, is one of those affected. She said: “Having MND is challenging enough without having the hassle of travelling all the way to St Thomas’ to have my respiratory issues looked at. It can take us up to two-and-a half hours to get to the hospital and there’s often a lot of waiting. After the appointment we have to travel home through rush hour traffic. By the time we get back to West Sussex it’s very late and I’m exhausted. I find it all too much for me. There should be a facility for people in West and East Sussex where we don’t have to travel so far.” Liz is already worrying about her next

Carers share their stories at Westminster event

Liz Currier

Thanks to the support of local people affected by MND the issue has attracted cross-party support with 12 MPs now actively engaged with Care Commissioning Groups (CCGs) across Sussex. The Conservative MP for Chichester, Gillian Keegan, Labour MP for Hove, Peter Kyle and Green Party MP Caroline Lucas have also given their support. In August, our supporters on Twitter urged Amanda Philpott, Chief Officer of Hastings and Rother CCG, to work closely with the MND Association to find a solution to this gap in respiratory care for vulnerable adults across Sussex. To show your support for Every Breath please tweet @MNDCampaigns. To find out more about Every Breath follow us on Twitter @mndcampaigns or on Facebook

ELEBRATING carers and their unique contribution was the aim of an event held in Westminster to mark Carers Week during the summer. The MND Association was one of eight partner organisations to hold a drop-in event for MPs in Parliament as part of Carers Week, which was attended by 85 MPs and Peers as well as six Government Ministers. Two volunteers, Brian Jackson and Jessica Devnani also shared their experiences of what it’s like to care for loved ones who are living with MND and how the Government could do more to support people like them. Jessica said it had been a wonderful opportunity to share her experiences and concerns with decision-makers, while Brian said attending the event had been, ‘a very worthwhile experience.’ Carers Week is an annual campaign to raise awareness and highlight the challenges carers face while recognising the contribution they make to families and communities throughout the UK. The campaign is brought to life by thousands of individuals and organisations who come together to organise activities and events, drawing attention to just how important caring is. The focus for Carers Week 2018 was building communities that support the health and wellbeing of carers. Around 6.5 million people in the UK are carers, looking after a parent, partner, child or friend.

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“My life with MND through a lens”

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After being diagnosed with MND in his 40s, Miles Pilling was keen to raise awareness of MND and to shine a spotlight on the work of the whole MND community. In this feature, Miles talks about 26miles4MND, a unique project which has seen him travel the length and breadth of the country with his close friend, Cristian Barnett, taking photographs of some of the people who continue to inspire him.

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ILES Pilling was just 46 when he was diagnosed with MND. As a camera-man, editor and director for the BBC and ITV specialising in news and current affairs, Miles had a busy life, but he knew something was wrong when he started to experience problems with his back. He said: “At first, I thought it was just one of those things, particularly as I was in my mid-40s, but it became more and more of a problem and was affecting my work. “In the end, I decided to go and see an orthopaedic surgeon who sent me for an MRI scan. They found a small bulge in one of my discs and that was that – they thought they had found the reason for all my pain.” His symptoms continued for another couple of years with his GP suggesting that he could have multiple sclerosis (MS). Anxious for answers, Miles sought the help of a neurologist. Miles said: “When I finally got to meet him he was shocked that someone of my age had been forced to wait so long. I should have been a priority. Shortly afterwards, I was at work when my phone rang and I was told to go into hospital straightaway. Ten days later, I was diagnosed with Primary Lateral Sclerosis (PLS), a form of MND. I was told there was no treatment, but at least I had a diagnosis.” For a while, he returned to work at the BBC studios in Birmingham, relying on strong painkillers to help him get through the day. In April 2014 he took medical retirement. He said: “Suddenly, at the age of 47, I found myself using a mobility scooter to get around. “Having studied at art college I loved photography, so I went out and took photos while using my mobility scooter. I wanted to show people what the world looks like from my point of view. I came up with the name Scooter Shooter and put my photographs on my website.” When his friend of 25 years, Cristian Barnett, heard about his diagnosis he was keen to do whatever he could to help. Miles explained: “I had met Cristian at art college. He is one of my best friends and is also a professional editorial photographer. When he heard I had been diagnosed with MND he said we

Miles and Christian Barnett

Miles and Sarah Ezekiel

should do something to raise awareness and money, but we wanted it to be something different. We merged photography with his love of running and came up with 26Miles4MND.” Their unique project has seen Miles and Cristian travelling the length and breadth of the country, photographing people with a strong link to the MND community. There are photos of people living with MND, including Association supporter, Sarah Ezekiel, famous faces such as actress Gina Bellman and 80s superstar Kim Wilde, pictured, as well as MND researchers and Association staff including chief executive, Sally Light. Miles said: “I have met some truly amazing people through this project. We travelled to Edinburgh to meet Euan MacDonald, who was diagnosed with MND when he was 29. He has set-up the Euan MacDonald Centre – an internationally-recognised centre for MND research. “We met the creators of the puppet show CELL, which tells the story of someone’s journey with MND as well as some of the country’s leading MND researchers. I met Professor Dame Pamela Shaw at the Sheffield Institute for Translational Neuroscience (SITraN) and found myself becoming really emotional when I saw all the work that is being done to find new treatments and a cure. “One of my favourite pictures has to be the one with Kim Wilde – I had no idea I would be pictured playing the guitar with an 80s legend! Kim is married to one of my friends and I have known her for a long time. We went along to their home to have the picture taken and it was a lot of fun!” The portraits, which are now available to view via Instagram at 26miles4MND, or at www.26miles4MND.co.uk, will now form a book which will be available to buy during the Association’s 40th anniversary year in 2019. In addition, Cristian, will be taking part in a marathon – the 26-mile element of the project – to boost the amount raised. If you would like to support Miles and Cristian, you can donate via their Just Giving page at www.justgiving.com/ fundraising/26miles4mnd You can also view Miles’ gallery of photographs at www.scootershooter.co.uk

Miles and Prof Martin Turner

Miles and Sally Light

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We need your help to In the meantime, we need your support Within this edition of Thumb Print you will find a postcard to send to your MP. The postcard has a pre-printed message outlining the campaign and what your MP can do to help. It is important that postcards are sent in before 13 November 2018, but if you don’t have time to post it, you can send your MP an email instead at www.mndassociation.org/ scrap6months. You can join our Campaign Network by visiting www.mndassociation.org/ campaignnetwork or contact us at campaigns@mndassociation.org, if you have an experience of applying for benefits which you would like to share. If you are living with MND or know someone with MND who needs help to access disability benefits, please contact our Benefits Advice Service on 0808 801 0620 (England and Wales) or 0808 802 0020 (Northern Ireland).

Martin Burnell, who is living with MND and Association trustee Dr Nik Sharma were among those who attended a meeting of the All-Party Parliamentary Group to discuss Scrap 6 Months on MND in July.

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CHIEVING a benefits system which works well for people living with MND is the aim of the Association’s Scrap 6 Months campaign - and we need your help to ensure our message continues to be heard. The Association, together with its supporters and members, is calling upon the Government to change the law to ensure people living with MND can access benefits, such as Personal Independence Payment (PIP) and Universal Credit, through the Special Rules for Terminal Illness (SRTI) fast-track. At present, to access the fast-track, there needs to be a ‘reasonable expectation of death within six months’ – something which is incredibly difficult to predict in

people living with MND. The Association believes there should be a change in the law to bring England, Wales and Northern Ireland in line with Scotland, where new legislation has replaced the need for lengthy forms and stressful reassessments with a decision made by the claimant’s clinician. Throughout the summer, the Association, its supporters and the All-Party Parliamentary Group on MND, have been busy raising awareness of this important issue with MPs and our best chance of getting the law changed will come in November, when the Second Reading of the Access to Welfare (Terminal Illness Definition) Bill takes place in Parliament.

The time it takes to access services is key for those with MND

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HE time it takes to access services and the cost of adaptations or moving to a new home were the key concerns raised by people affected by MND in a recent housing survey. Earlier this year, the Association launched the survey to get a better understanding of the issues faced by those affected by MND when it comes to housing and around 850 people took part. The results of the survey will be used in the Association’s campaigning. For more information, see the infographic, right, or visit www.mndassociation.org/ housingsurvey

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Swimmers with MND bravely take to the water to raise money and awareness

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ORMER footballer Len Johnrose, who recently announced he is living with MND, was among those who took part in the Intertrust London City Swim for MND in September. Len started the first race with a klaxon before taking part in the second race supported by his daughter, Elizabeth, Lucy Hawking, daughter of the late Prof Stephen Hawking and staff from the MND Association.

Len Johnrose is pictured with the Association’s chief executive Sally Light, left and Lucy Hawking

David Setters with his wife, Helen

In a tweet following the event, which was held in the Royal Victoria Dock, he described taking part as ‘an absolute privilege.’ David Setters, who is also living with MND, was among the 325 swimmers who took part.

He said: “It was a very uplifting evening. How fantastic to see so much awareness being raised by many people who will not have known about MND previously but, at the same time, experience the positivity of others living with MND who came along with their carers and families to participate. The support – whether it was vocal, getting me into and out of my wetsuit, the sponsorship or getting me into the water, around the circuit and back out again safely was amazing. Well done to all the organisers and roll on next year!”

Guide is highly commended in national awards

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HE Association’s guide Eating and drinking with motor neurone disease (MND) was highly commended at the BMA Patient Information Awards in September. The cook book and its companion web app were shortlisted to the final five in the Self Care category and were described as ‘a good resource for patients.’ The reviewer even said they had tried a couple of recipes themselves before passing it on to someone living with MND. The Association’s Care Information Team would like to thank all those living with or affected by MND, and their expert panel, for their support during development. For more information about our guide visit www. mndassociation.org/eating. To read more about the Association’s Care Information turn to page 26 and 27.

“How fantastic to see so much awareness being raised by many people who will not have known about MND previously but, at the same time, experience the positivity of others living with MND” The event was organised to raise money for the MND Association and The Stephen Hawking Foundation. To date, more than £100,000 has been raised for MND research.

Could you share your story? Would you be willing to share your story in one of our forthcoming publications? Whether you are living with, or affected by MND, the Association is always keen to hear about your experiences, which could feature in future issues of Thumb Print or our Impact Report. If you are interested in finding out more, please contact clare.brennan@mndassociation.org

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Documentary is a ‘fitting tribute’ to Roch

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HE story of a family whose lives have been touched by MND featured in a Channel 4 documentary in August. The four-part series Grayson Perry: Rites of Passage looked at how landmark moments in our lives could be reinvented. The Turner prize-winning artist helped people to tailor their own personal ceremonies with four weekly themes; Death, Marriage, Birth and Coming of Age. In the first episode, Grayson met Roch and Deirdre Maher who were long-term campaigners in the MND community, and their family. Roch shared his experience of living with MND with filming taking place at his home, while watching his beloved Brentford FC and also at a moving ‘living funeral’ which saw Roch and his family and friends share stories and place mementos in a memory jar made by the artist. Sadly, Roch died at his local hospice just weeks after filming ended, but was committed to the programme being broadcast and the way it openly discussed end of life decisions and planning.

Deirdre said: “It wasn’t always an easy process but we were very pleased with the result and I think the opportunity to take part came at the right time. It was also a huge boost for Roch and a wonderful thing for him to hear how much his support of others was valued and how loved he was. He had a great rapport with Grayson, and throughout the process, which started back in August 2017, the whole production team was sensitive, respectful and fun to work with too.” The episode featuring the Maher

Roch, Deirdre and Grayson Perry are pictured at Brentford FC during filming

Special day is held for carers

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CARERS’ Day was held in Northern Ireland during the summer to mark Carers’ Week. The Burrendale Hotel and Spa was the venue for the event which was hosted by the Northern Ireland Branch. During the day, carers came together and shared experiences and made use of the health club’s facilities. They also enjoyed individual spa treatments and lunch. One carer said: “It was such a lovely treat for us all and I enjoyed every minute! I really felt as if I’d been away for a holiday.” Northern Ireland branch secretary Marie Holmes, who is also an Association visitor, said: “As a branch we wanted to provide

something special for carers during Carers’ Week in June. The day went really well, and everyone enjoyed themselves.” To read more about Carers’ Week turn to page 19.

ROVIDING people living with MND with a bigger and better volunteer support service is the aim of a new project. In the coming months, the Association will be looking in greater detail at what it can do to improve the support it currently offers to those affected by MND, as well as developing ways to reach even more people who need our help. This could mean building on our highly-valued Association visitor network as well as exploring new ways in which volunteers can help. You can find out more about this project and give us your views by visiting www. mndassociation.org/supportvolproject – we’d really welcome your feedback.

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Make a date to attend a conference

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Share your views about support by volunteers

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family was broadcast in August, receiving widespread recognition and positive reviews in the media. Grayson and Deirdre also appeared on the sofa of The One Show to discuss the issues raised. Grayson said: “It’s been a moving and humbling experience working with Roch, Deirdre and their family for this documentary. The courage with which they all faced Roch’s condition, and the clear-eyed honesty with which Roch was willing to discuss it, should be an inspiration for everyone living with a terminal diagnosis. I want to say a massive thank you to everyone involved.” Chris James, the MND Association’s director of external affairs said: “We were proud to support the Maher family though the production process and so grateful to them for sharing their experience and raising awareness of MND and difficult conversations around death. It was a hugely moving and powerful programme and a fitting tribute to someone who did so much for the MND community.”

ORE than 71 people attended the West Regional Conference which was held in Northern Ireland in September. During the day, Association chief executive Sally Light explained more about the Association’s work during 2017 as well as highlighting the important projects which are making a real difference to the lives of those affected by MND. Delegates also found out more about the progress being made in MND Research as well as the work of the Northern Ireland branch. If you were unable to attend the conference in Northern Ireland, the first regional conference of 2019 will also be held in the West region, this time in Birmingham on 9 February. Other conferences will be held in Manchester on 22 June, Exeter on 21 September and London East on 12 October. Entry is free to people living with MND, their families, carers and MND Association volunteers. For more information, or to register, visit www.mndassociation.org/ conferences


Information updates NO W

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An easy read guide to Motor Neurone Disease (MND)

An easy read guide to motor neurone disease: Our guide for people with learning disabilities or reading difficulties has been revised and user tested to improve the content. It now includes symbol images as well as photographs to add more visual guidance.

Information sheet 10C – Disabled Facilities Grants: We have revised this sheet to help people with MND or Kennedy’s consider possible funding of home adaptations and equipment installations through a Disabled Facilities Grant (DFG).

Care information vlog: Our second vlog about our information provision for people with or affected by MND has now launched. The vlog explains who gets involved in the development of our information, including clips from a member of our User Review Group. See also our article about user review on pages 26 and 27. You can watch the vlog at: www.mndassociation. org/careinfo

New animation What is voice and message banking?: This animation has been made possible through Credit Suisse fundraising in 2017. It provides an audio-visual introduction to voice banking and message banking, and the differences between them. It includes what to expect when going through the recording process. To watch this, see the dropdown for the animation at: www.mndassociation.org/ speech

Information sheet 1D – How we use your information: This sheet has been revised to better explain how we use your information, following changes in data protection regulation.

You can download our resources at: www.mndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org

Sixth MIROCALS UK recruitment centre has opened in Glasgow The MIROCALS UK clinical trial, partfunded by the MND Association is investigating low-dose Interleukin-2, a molecule that helps to regulate our immune system, as a potential treatment for ALS, the most common form of MND. Since June 2017, the trial has been recruiting newly-diagnosed people not yet on the riluzole treatment via 10 recruitment centres in France, and six in the UK; Brighton, Sheffield, three centres in London, and most recently at the Queen Elizabeth University, Glasgow. For more information about the trial and to see who is eligible to take part, please visit www.mndassociation.org/mirocals-clinical-trial This project is funded by the Garfield Weston Foundation and J P Moulton Charitable Foundation

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How you can make a diffe W

HEN someone is diagnosed with MND, it is vital that they, and their carers, have access to information which is clear, easy to understand and appropriate for each stage of their journey. With support from members, the MND Association has created a wide range of information for everyone affected by MND, from sheets and guides to alert cards

and small booklets. Some resources are available in different languages, Braille, or other formats, including PDF, audio, video and animation. Watch out next year for e-readable documents, with easy-to-read text for mobile devices. In this feature, you can find out more about how you can influence our care information and get involved with our User Review Group.

Colm Davis, living with MND and a reviewer Colm lives in Northern Ireland and recently joined the User Review Group. He said: “I was delighted to get involved and would encourage others to do so. The information team is friendly, hard-working and welcoming. The review process is simple, encouraging and easy to manage.” Now retired from a career in education, Colm spent many years working with people who have special needs, for which he was awarded an OBE. He is also the former Vice President of the National Association of Head Teachers (NAHT) and has a keen interest in information. He feels it’s important for the end user to check if content is fit for purpose, meaningful and functional, while being easy to comprehend. He says he finds the MND Association range of literature, ‘user-friendly, informative and useful,’ with something suitable for all ages and levels of reading ability. “Each resource whets the appetite to explore other publications in more detail, and the MND Connect helpline offers further help,” he said.

From you to us
 Evidence We use evidence-based research to support our content, which often includes input from people with or affected by MND. We seek out these studies and published research for wider understanding of your needs.

A feedback form or survey link is included in each publication, so you can let us know what you think. See the feedback form drop-down selection at: www.mndassociation.org/careinfo or email your thoughts to: infofeedback@ mndassociation.org

From us to you
 We produce a short video, or vlog three times a year to explain our work and new resources. Each vlog features someone with or affected by MND to share how they’ve been involved. See our vlogs at: www.mndassociation.org/ careinfo

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ference to our information How we use your input As data protection law has changed in 2018, we revised information sheet 1D – How we use your information. You can download this sheet and most other publications at: www.

User Review Group 
 People with MND, carers and former carers help shape our content and we’re currently looking for more reviewers. All you need is an internet connection, with access to email, and each task is optional. You read a draft, complete a short confidential survey and we amend our content where relevant. All quotes are used anonymously. We’d love to hear from you, at: infofeedback@mndassociation.org  

mndassociation.org/publications or order printed copies through our MND Connect helpline: 0808 802 6262 or via email at mndconnect@mndassociation.org

We’d really like to hear your thoughts… We’re currently running a short questionnaire to find out more about your information needs, including how you want content to be presented. Find the survey at www.surveymonkey.co.uk/r/information2018 which should only take 10-20 minutes to complete. It will remain open until Friday 9 November 2018. We welcome your input.

Cyndy Mepham, former carer and reviewer Cyndy is passionate about there being clear information about support, as her husband Roy, who sadly died from MND in December 2010, sometimes found it difficult to access appropriate care. Cyndy joined the User Review Group in 2012. She said: “Having cared for my husband, I felt I could add a few personal views and thoughts to help others with MND.” Cyndy has been involved in many review tasks over the years. She said: “Although some of the topics are tough after going through the illness, the actual review process is easy and clear. I am amazed at how much more information and help is available now, from the point of diagnosis and to inform people throughout their time with MND.

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May 2009: Opening the Association’s 17th MND Care Centre at St Bartholomew’s Hospital in East London

April 2011: Visiting the Euan MacDonald Centre for MND Research at the University of Edinburgh where HRH met its founder Euan MacDonald who is living with MND

May 2013: Attending a roundtable discussion to promote the Association’s MND Charter

July 2014: Launching the Leeds MND Wheelchair Centre at Seacroft Hospital with people living with MND, volunteers, healthcare professionals and fundraisers

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“She is a w advocate fo F OR the past ten years, the MND Association has been extremely fortunate to have the support of our Royal Patron, HRH The Princess Royal. Since 2008, she has attended 22 events on the Association’s behalf, spending countless hours meeting volunteers, researchers, campaigners and fundraisers as well as those whose lives have been affected by MND. The Association’s chief executive Sally Light said: “It is a great honour to have HRH The Princess Royal as our Royal Patron and we are extremely grateful for everything she has done to support our work over the past decade. “HRH has tremendous knowledge of MND and understands the challenges those living with the disease face. She follows our work with great interest. “In my five years as chief executive, it has been a privilege to attend many events alongside the Princess and I know HRH particularly enjoys those where she is able to thank our amazing volunteers and supporters personally for everything they do. Seeing how much it means to the guests is always very special and we are fortunate to have such a wonderful advocate for our cause.” The Princess’ first official engagement as the Association’s Royal Patron was the opening of our 17th MND Care Centre at St Bartholomew’s Hospital in East London in May 2009. During her visit, the Princess took a tour of the clinic, including the treatment rooms, before unveiling a plaque. She was accompanied by the Association’s President, Prof Sir Colin Blakemore. During 2018, Her Royal Highness will have attended seven events on our behalf including an event at Cheltenham Racecourse to thank supporters in the West of England in June and our annual research dinner in October.

October 2014: Joining volunteers for the Association visitors’ forum in Stratford-upon-Avon


wonderful or our cause” Earlier in the year, the Princess attended a reception in London to highlight the importance of communications aids. One of those who met her during the evening was Sarah Ezekiel, pictured right, who is living with MND. Sarah said: “I first met The Princess Royal at St. James’s Palace several years ago. I remember that she was very kind to me and touched my hand, which was very caring. “The second time, in February this year, was more nerve-wracking because I was doing an interview with the Association’s patron, Jeremy Vine. The Princess asked me about my artwork and seemed very interested, which was great. I really like her and think that the MND Association is very lucky to have her.” Association trustee Jan Warren first met the Princess at the launch of the Norfolk MND Care and Research Network in January. She said: “I was terrified my nerves would get the better of me, but she was exceptionally warm and immediately put me at ease. The room was full of excited groups and she made everyone feel important.” Kate Byron, pictured right, met the Princess at an event held in Aberystwyth in January to thank branch and group volunteers from across Wales. She said: “I have been a fundraiser for the Cardiff and Vale branch for more than five years now since losing my brother Sam to MND and have more recently taken on the role of a campaigner. Myself and the Princess chatted about how I was running the London Marathon for the second year in a row and she jested that the hard part was the training before. She went on to wish me luck.”

February 2018: Highlighting the importance of communication aids at an event in London

January 2018: Meeting branch and group volunteers from across Wales at a reception in Aberystwyth

March 2016: Thanking inspirational fundraisers and donors from across the Association at a drinks reception

Do you have memories of meeting our Royal Patron? Send your comments to clare.brennan@mndassociation.org

February 2015: Celebrating the success of the Ice Bucket Challenge which raised more than £7 million for the MND Association in just three weeks

March 2015: Encouraging involvement from high profile supporters at a black-tie dinner in Buckingham Palace www.mndassociation.org

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The Broad Appeal raises

£200,000 at fundraising ball Former Strictly Come Dancing professionals, Ian Waite and Erin Boag perform

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OUR hundred guests came together to help The Broad Appeal raise more than £200,000 for the MND Association at a fundraising ball held in September. The evening, which was held at The Dorchester in London and hosted by TV presenter Clare Balding, was organised by Association patron and former England cricketer Chris Broad, who set-up The Broad Appeal in memory of his second wife Miche, who sadly died from MND in 2010. The Appeal, which has raised more than £570,000 for the Association over the last seven years, is run by Chris, his son, England cricketer Stuart Broad and his daughter Gemma Broad, who spoke movingly during the event about Miche, while explaining more about the Appeal’s work. Among the guests were Cold Feet star Jimmy Nesbitt, Strictly Come Dancing 2016 champion Ore Oduba, Association patron Charlotte Hawkins and a host of England cricketers, including James Anderson, Jonny Bairstow, Alex Hales, Eion Morgan and Matt Prior. Former Burnley and Blackburn Rovers midfielder Len Johnrose and his wife Nadine also attended, just weeks after announcing that he had been diagnosed with MND. Highlights of the evening included a cricket question and answer session chaired by David Gower with Stuart Broad, Jos Buttler and James Anderson making up the panel. Former Strictly Come Dancing professional dancers Ian Waite and Erin Boag also wowed the guests with a flawless Latin and ballroom routine, including a Tango and American Smooth. Among the many auction prizes was a signed cricket shirt worn by Alastair Cook at The Oval where he reached a century against India before retiring from Test cricket, which raised £11,000 alone. To find out more about The Broad Appeal please visit: www.thebroadappeal.org

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Top: David Gower chairs a question and answer session with Stuart Broad, Jos Buttler and James Anderson. Centre: Pictured from left to right are Nadine and former footballer Len Johnrose, Association chief executive Sally Light and Association patrons Chris Broad and Charlotte Hawkins. Left: Gemma Broad


Rugby legend pledges support

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AMILIES affected by MND will directly benefit from a £100,000 donation to the MND Association from the Foundation set-up by former Scotland rugby star Doddie Weir. In 2017, Doddie, a former British and Irish Lion and Scottish international, announced that he had been diagnosed with MND and set-up the My Name’5 Doddie Foundation to help improve the lives of those living with MND in his native Scotland, as well as across England, Wales and Northern Ireland. The donation will be used by the Association to help people living with MND adapt their homes as well as funding respite activities for carers, such as a pamper day or short break. Doddie said: “We are delighted to be investing £100,000 to help families affected by MND across England, Wales and Northern Ireland. This follows our commitment to MND Scotland and reflects the level of support we have received across the whole of the UK since we launched the Foundation last November. “To be told you have motor neurone disease is devastating news. It has a profound effect on the whole family and, from the start, I wanted to do something to help people who were going through the same as me. We are committed to helping find a cure for this devastating disease, but also helping people whose lives have been affected. “We have already been able to help people through some individual grants, but we also know that charities such as the MND Association have the necessary experiences and resources to administer and manage this process, making sure we help people who need it most.”

Doddie Weir, pictured, centre, with Dr Brian Dickie director of research development left, and director of external affairs, Chris James.

The Association’s chief executive, Sally Light said: “We are extremely grateful to the Foundation for this very generous contribution to our grants programme. For some people living with MND, these grants are essential, whether it’s to allow them to make the adaptations necessary for them to continue to live as independently as possible or for carers to be given a chance to recharge their batteries and make their vital role a little easier.” To find out more about the grants available from the MND Association, visit www.mndassociation.org/grants. For more information about the work of the My Name’5 Doddie Foundation visit www.myname5doddie.co.uk Have you received a grant from the MND Association which has made a big difference to you or your family? Email Clare Brennan at clare.brennan@mndassociation.org.

“I hope we have made our family and the Association proud”

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HIS was the moment Lauren Smith leapt from a plane into a perfect blue sky to raise money for the MND Association on behalf of her grandad, Philip Brindle, who is living with MND. Lauren took part in the challenge at Skydive Hibaldstow in North Lincolnshire, alongside her brother Ethan in August and has, so far, raised £1,320 for the Association. Afterwards, she said it was the best thing she had ever done. She said: “We were inspired to do a skydive because it’s something neither of us have done before. We knew a skydive would be an extraordinary experience and we really hoped it would raise a large amount of money for the MND Association and make our family and everyone at the Association proud. “We were really excited when we were getting ready for take-off and in the aeroplane. It did get quite nerve-wracking when we reached altitude and the door opened, but it was very exciting! The actually skydive was amazing, like nothing I’ve ever experienced, it’s something I’ll never forget.” Lauren also had this advice for anyone wanting to try skydiving for themselves: “No matter how nervous you are, without a doubt it’s the most exciting thing you will ever do and when you see the total amount you’ve raised you will feel so proud of yourselves!” Inspired by Lauren’s story? Contact the Association’s fundraising team on 01604 611860 to find out more about the ways you can get involved.

Turn to pages 36 and 37 to read more stories from our amazing fundraisers. For more information about Skydive Hibaldstow visit www.skydiving.co.uk

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g n i h Pus s e v l e s m e th t i m i l e h t to t r o p p u s o t h t i w e l p o pe MND

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T has been a busy summer for many of our incredible supporters who have cycled hundreds of miles in blistering heat to raise money for the MND Association.

Among them was Alex Gibson who has recently been diagnosed with MND. He decided to take part in the Outer Hebrides Cycling Challenge in a bid to raise awareness of the disease and raise as much money as possible. He explained: “Having always been a keen athlete, I once represented Great Britain in the decathlon, I wanted to choose a physical challenge that could be adapted to my condition. I came across a cycling challenge in the Outer Hebrides which involved covering 185 miles across ten islands.” Having persuaded a group of friends to join him, Alex started training using a recumbent tricycle, often cycling up to 82 miles a day. He said: “The training was intense, but adaptation was key. “The real joy of the challenge was the beautiful scenery and the occasional sightings of dolphins, golden eagles and puffins along with the hospitality and generosity of the locals.” To date, Alex and his team have raised more than £32,000. He said: “The generosity that people have shown is overwhelming and a big thank you goes out from the bottom of my heart.”

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en Davies also had his own very personal reason for taking part in the Cheltenham to Paris bike ride. He explained: “About 18 months ago my uncle ‘Big’ Tony was diagnosed with MND. As a family we had never been fully aware of what MND was. “The impact that it had on his independence and well-being had been very difficult to watch and even harder for my auntie and his children to deal with. To see a loved one deteriorate and become dependent on others was very hard for the whole family as we felt so helpless.” Ben decided that he wanted to do something to raise money for MND research so together with two friends, Alex and Matt, they took on the Cheltenham to Paris bike ride. He said: “We all like cycling and thought going to Paris would be a good challenge for us as this was our first big cycle. “The excitement got us through the first day. The biggest low point was getting on the ferry, having three hours sleep and then having to cycle at 5.30am on the wrong side of the road for three hours before we could stop, but the thought of why we were doing it helped us to power through and we got to Paris.” Ben said he was delighted to have raised more than £1,900. He said: “The biggest thing for me was that my uncle was able to see how much we had raised. Unfortunately, he has since passed away, but his family will always be grateful for the support they received and he will never be forgotten.”

“The beauty of retirement is that you choose how you spend your life and we all do something to make our own lives meaningful”

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N July, 20 #TeamMND cyclists took part in a 300-mile bike ride from London to Paris in 40 degree heat. Association trustee Nikhil Sharma, staff members Nick Goldup, and Clare Salter and MND researchers Andrew Barritt and Isabella Kaczmarczyk were among the group which completed the ride in just three days. Emma Jacques and Liz O’Connor completed the ride on a

tandem and powered up even the biggest hills. Emma, who cycled in memory of Liz’s uncle Bryan, said: “It gave me greater determination to know that everyone was doing it for a reason close to their hearts.” Nick Woolven completed the challenge to mark his 60th birthday and cycled in memory of his wife Yvonne. He said: “The date of the last day in Paris would have been our 24th wedding anniversary. Yvonne and I went to Paris together, where I proposed to her under the Eiffel Tower. I carried our wedding rings on the ride and had many thoughts of Yvonne, especially around Paris. I’m sure she would have loved it and been very proud.” Association visitor Alison Jones was also celebrating a landmark birthday as she turned 70 just a couple of weeks before the ride. She became an Association visitor after being inspired by an MND Association volunteer she met at her local hospice. Alison said: “The beauty of retirement is that you choose how you spend your life and we all do something to make our own lives meaningful.” The group has raised more than £32,000.

“The generosity that people have shown is overwhelming and a big thank you goes out from the bottom of my heart.”

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im Marshall and Coram Williams took part in the 2018 Prudential Ride London on fold-up Brompton commuter bikes, raising more than £13,000. The event saw the colleagues cycle 100 miles from Surrey to London on one of the wettest days of the year. Both were inspired to take part by personal connections with MND. Coram had sadly lost a close family friend to the disease and Jim’s wife Association trustee Janis Parks, lost her father and uncle to the disease. Jim said: “About a year ago, Coram and I had one of our regular catch-up meetings. I had just completed Ride London 100 a few days before and had passed someone doing it on a Brompton Bike. “Coram had just bought one and I joked that he should do the 2018 Ride London on it. He said he would as long as I did it on a Brompton as well. I agreed as long as he raised money for the MND Association and he kindly agreed to do so. “Our ride happened on the one day when the heavens opened. I can’t remember the last time I got so wet on a bike, but it was worth it. The support we got from family, friends and colleagues on the road and the number of spectators who shouted out ‘Brompton!’ as an encouragement was simply staggering.”

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team of MND Association staff took on the 54-mile London to Brighton bike ride in September. Darren Carr, Colin Morris, Phil Day, Richard McManus, Teresa Deacon and Association supporter Elaine Cooke all took part in the event on 16 September raising more than £1,000. Teresa said: “It was an incredible experience and one that we will never forget. It was a real challenge, particularly the ride up to Ditchling Beacon, the third highest-point on the South Downs, but we were determined to get there. We linked up with so many supporters who shared their stories with us and helped us over the finish line.” Have you been inspired? To join us for the London to Paris bike ride next year visit: www.mndassociation.org/l2p or for any other challenges email fundraising@mndassociation.org To find out more about becoming an Association visitor visit: www.mndassociation.org/associationvisitors www.mndassociation.org

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branchesandgroups

Loved ones are remembered as group comes together for 20th annual fundraising walk

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HE sun shone as around 150 people took part in the 20th annual fundraising walk organised by the West London and Middlesex Branch. Beautiful Bushy Park in Hampton, Middlesex was the venue for the event which saw branch members, volunteers and people living with MND all come together to raise awareness as well as much-needed funds. Regional fundraiser Lou Blair said: “It was heart-warming to see the incredible turnout but also the bond that the branch committee and volunteers have with those affected by MND. It was a wonderful opportunity to support those who have gone through, or are going through, such devastating and difficult times.” Geetha Menon was one of a group of friends who took part in the walk to raise money in memory of Lekshmi Krishnan, who died from MND. She said: “The reception to this year’s walk, on a hot summer’s day, had the same warmth and welcoming atmosphere as in

years past. We found the dedication and passion of the branch volunteers to be truly remarkable. We are extremely glad to have taken part and hope to be there every year to help with the fundraising.” Zoe Kyriacou and her family took part in memory of her mum, who died from MND in 2014. She said: “The walk was so lovely and I want to thank everyone involved in making it such a special day. We thought it would be a great way to give back while

A delicious way to raise money

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ELICIOUS cakes were among the treats on sale at a summer fete organised by 10-year-old Noah Lambert. The event was held in Combs Ford in Suffolk in July and was organised by Noah in memory of his grandfather, Gordon Paton, who died from MND in 2010. More than £270 was raised by Noah and his friends which was donated to the Suffolk Branch. Noah is pictured, centre, with his schoolfriends at the event. Put your baking skills to good use by organising a bakeit! sale – for more information turn to page 18

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remembering my Mum. The branch does incredible work and during my Mum’s struggle the Association helped my family so much and for that we will forever be grateful. The Association needs events like this to raise money to continue to help the families affected by this terrible disease. We will never stop fundraising.” The event raised an incredible £9,300. It is estimated that the event has raised more than £160,000 over the past 20 years.


branchesandgroups

Street collection raises £242

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ORE than £242 was raised by the Association’s East Surrey Branch during a collection outside the Sainsbury’s store in Dorking. Amanda Skelly, pictured, was one of the volunteers who took part in the collection on 30 June. Branch chairman Simon Edmands thanked all the branch members and supporters who gave up their time throughout the day.

Musical comedy duo Bounder and Cad perform

Evening of entertainment raises far more than just a smile!

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N evening of music, comedy and laughter was held by members of the Norfolk, Norwich and Waveney Branch in June. Featuring a performance by musical comedy duo, Bounder and Cad, as well as a raffle and auction, more than £28,000 was raised. The event was held in a marquee provided by branch committee member Jane Wickstead and her husband Mike who kindly allowed the branch to use it following their daughter’s wedding. During the evening, Judy Burns Thomson spoke movingly about the challenges people living with MND face and David Dick, a consultant neurologist at Norfolk and Norwich University Hospital also attended. Jane and her fellow committee members, Pat Amey, Paris Back, Janey Chadd, Jules Savory and Jane Wickstead were delighted the evening was such a huge success.

Gifts in Wills

hope A gift in your Will could give

of a world free from MND

Please help us create a world free from MND for future generations with a gift in your Will To request an information pack please contact Emma Fellows, Legacy Manager on 01604 611898 or email emma.fellows@mndassociation.org www.mndassociation.org/wills

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thankyou

Share your pictures at www.facebook.com/mndassociation If you are sending in photographs to feature on these pages please ensure you have full permission to use the images before sending.

‘In memory of Grandad’: Andrew Kearns has raised a fabulous £925 after taking part in the 112-mile Fred Whitton Challenge through the Lake District. Although beating all the iconic and tough climbs on this ride, he couldn’t slow down on the final downhill section and crashed after 99 miles. Despite the setback, he was delighted with the amount he raised in memory of his grandad whom he sadly lost to MND four years ago.

Golden girls: Orla Bell proudly shows off her medal after taking part in a 12km cross country relay race on 7 July. Orla, together with three friends, who call themselves the Rapid Runners took part in the event for her Uncle Stephen, who was diagnosed with MND a year ago. Her mum, Joolz said: “Orla and her friends had an amazing time. They had intended to run 12km, but actually had so much fun they ended up running 24km. The spirit and support they gave each other and other runners was lovely to see and Orla raised £562. We are very proud and her Uncle Stephen thinks she is amazing.”

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A monumental effort: The flag was flying on the landmark Peel Tower in Bury, Lancashire on 24 June when sisters Barbara and Vivien, along with sister-inlaw Christine, opened up the historic building for a fundraising day in memory of their brother Colin. Barbara said: “More than 150 people bought tickets and went to the top of the tower, and even more came in to enjoy a cuppa along with a piece of cake or a scone. So many people came to wish us well, and to support with donations – it was overwhelming. The amount raised, which was over £800, far exceeded my expectations.”

‘We are family’: When Dawn was diagnosed with MND, she immediately wanted to do something positive so started fundraising on behalf of the MND Association by setting up a Fightback Fund. Dawn and her family, friends and colleagues have been busy baking, climbing mountains, running and jumping out of planes. Dawn, who is pictured with her family and colleagues after they climbed Mount Snowdon, said: “I feel so lucky to have such good family and friends. We’ve always been close but since my diagnosis we’ve got closer. I’m proud to have such good work colleagues too. I never knew how special I was to them until now.”

Pedal power: Inspired by his mum, Lynda, who is living with MND, Stuart Shepherd cycled 365 miles from Chelsea in London to Land’s End. The five-day event, which started on 21 July saw Stuart and two friends ride around 70 miles a day. He explained: “Last year, I decided to run my first ever marathon, so I could raise money and awareness for the MND Association. This year, I came up with a new challenge. It was tough, but a stunning and very rewarding journey. Arriving at Land’s End felt like a massive achievement and quite overwhelming. I set myself a target of raising £1,000 and I can proudly say I have raised over £1,600 so far!”


thankyou Let’s rock! Olivia and Isabelle Hargreaves joined a popular trend of painting rocks and hiding them for others to find to raise awareness of MND. Their Uncle Martin is living with MND and they wanted to do something different to show their support. They are pictured showing off their brilliant designs.

If at first you don’t succeed: Jasbir Thumber and his intrepid team have finally completed their Three Peaks Challenge, 10 months after their first attempt was cut short due to bad weather. They were determined to go back and finish the task and here they are, celebrating at the top of Ben Nevis. The trip was made even more poignant by the sad loss of Jasbir’s brother, who died from MND in July. The team raised a wonderful £1,189 in his honour. Jasbir said: “It has been an emotional rollercoaster for the whole family but we have come out the other end. We believe my brother is in a peaceful place now.” Best feet forward: Walkers taking part in the Kings Lynn Walk to D’feet MND on 16 June were treated to an unexpected performance by the Red Arrows. During the event, a cheque for £300 from Rosella Clare was presented to the group. She had completed the Mini Great East Anglian Run and had 21 inches of her hair cut off to raise money, in memory of her aunt, Mandy Gamble. A total of £86 was donated in the group’s collecting tins and two supporters from North Walsham also raised £350 for the Norfolk, Norwich and Waveney Branch.

Flying high: Wendy Mills, who is living with MND, braved her fear of heights and flew 5,000 feet high in a glider! She said: “My flight was wonderful, despite the earlier trepidation about heights. I never expected to raise £1,000, even glider club members who I had never met before had a whip round! My family and friends are waiting to see what I do next!”

Recipe for success: Ricki Hale and friend, Wendy, held a bake off in memory of his Uncle Bob. An afternoon tea and cake sale held in June raised an incredible £590. Ricki has also applied for matched giving from his employer, The Bank of Ireland.

Back to school: Tony and Janet Plant organised a ‘blingo’ night and a Silence Speaks in their local school, raising £4,500. Tony, who is living with MND, gave a talk to the children at Bolton by Bowland Primary School about MND and a demonstration of his ‘banked’ voice. The school, which has 47 pupils went on to raise an amazing £1,000 by keeping quiet. Tony and Janet also raised £3,500 from their ‘blingo’ evening and raffle in their village hall near Clitheroe, Lancashire.

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yourletters If you have something you would like to share with other members of our MND family, we would love to hear from you. Letters, which must include your full address, can be sent to Your letters, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email to editor@mndassociation.org Please note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

“Giving hope to others in memory of a wonderful husband, grandfather and friend”

I

never cease to be amazed and humbled by the courage and resilience of the people living with MND who I read about in Thumb Print. I am both sad and proud to count my husband, Ian, among them. Ian died in early April of this year, a day before the second anniversary of the terrible diagnosis of bulbar onset motor neurone disease which turned his fit and healthy 70-year-old body into that of a frail and stooped old man. MND quickly robbed Ian of his voice and his ability to smile or swallow, but not his sense of humour or his insatiable interest in life and people. His iPad was his voice and his contact with the world, almost to the very end.

Ian, pictured helping to build a bridge as a Natural England volunteer

Despite embarrassing and debilitating hyper-salivation and increasing muscle weakness, he continued to play tennis until the incumbrance of a syringe driver

diarydates

forced him to stop, six months before he died. He had been treasurer of the local tennis club and actively encouraged new members to join, as well as working hard to improve the facilities. His friends at the club have very touchingly organised a tournament in his memory this summer, having fun and raising funds for the MND Association. Another passion of lan’s was his weekly involvement as a volunteer with the East Dartmoor National Nature Reserve Tuesday team at nearby Yarner Wood. Together with his four companions, he enjoyed many practical activities such as building a wooden bridge, helping to set up a new bird hide with wheelchair access, making bird and bat boxes, hedge laying and monitoring breeding patterns. The team was runner up in the national Natural England Green Award for Terrific Achievers in July 2017. Tuesdays were the highlight of Ian’s week. He was often out for eight hours and stoically put his liquid nutrition through his PEG feeding tube at lunchtime while his mates tucked into sandwiches and crisps and enjoyed mugs of hot tea. He carried on working until the last six months of his life. During that time, he enjoyed being taken to see his friends and, when he became too weak even for this, reading the Tuesday emails they very kindly wrote was both poignant and entertaining. Motor neurone disease must surely be

Sue, with her husband Ian, who died from MND in April

one of the cruellest and most complicated of illnesses. I shall never forget the impact of being told at diagnosis that there is currently no cure or treatment. Our daughters set up a JustGiving appeal in lan’s memory for donations to the Association for research so that, hopefully, this will not always be the case. The response has been incredible: a fitting legacy to our brave, funny and hugely missed husband, father, grandfather and true friend. Sue Patterson, via email

More of Your Stories: Pages 11, 12 and 13

• West regional conference: Birmingham, 9 February, 2019 • Vitality Big Half, London: 10 March 2019 – www.mndassociation.org/mnd-event/big-half-marathon • Brighton Marathon: 14 April 2019 – www.mndassociation.org/mnd-event/brighton-marathon • London Marathon: 28 April 2019 – let us know if you have your own place at www.mndassociation.org/mnd-event/london-marathon • Walk to d’feet MND: All year round – organise a Halloween, bonfire night or festive walk in your area www.mndassociation.org/walk-to-dfeet

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aboutus

Hotels offer a mixed experience

I

read the article in Thumb Print about Ashley Morgan’s stay in Jersey and thought I would contact you about our recent holiday. My husband has MND. He can walk indoors on flat surfaces with a walking frame but cannot manage any steps and uses a wheelchair outdoors. We visited Cornwall and stayed at the King Arthurs Arms pub and bed and breakfast in Tintagel, Cornwall. It has five ground floor wheelchair accessible bedrooms, suitable for the use of disabled guests. Ground floor en-suite rooms are suitable for guests using a wheelchair or crutches. A wet room, shower wheelchair or shower stool are available and an adjustable bed, adjustable chairs, ramps and grab rails are all provided. Other equipment such as hoists can be arranged with a local company and personal assistance can be arranged directly with a local care agency for the duration of your visit. Our room had two televisions - one in the sitting area and one in the sleeping area and I counted 17 double electrical sockets at waist height around the room so any electrical equipment could be plugged in exactly where you wanted it.  It is rated M3a under Visit Britain’s National Accessible Scheme. We also booked to stay in a couple of other hotels to break our journey to Cornwall from Essex.  We followed the guidance on one company’s website to ring the specific hotel and confirm they had accessible accommodation with a wet room available for our booking.  Despite this, when we arrived at the one in Wells, they had allocated us an accessible room with a bath which is no use for my husband and they could not move us as the rooms with wet rooms had already been given to other guests.   Gill Gibson, via email

What is your experience of travelling with MND? Send your stories to clare. brennan@mndassociation.org

“How cruel MND can be”

The Motor Neurone Disease (MND) Association

His speech is slurred every word is blurred he struggles to be heard

We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. As a charity we rely on voluntary donations. Our vision is a world free from MND.

Day by day his life ebbs away but there’s no relief come what may

Social media

A

mateur poet Norma Graves wrote the following poem after a friend of hers was diagnosed with MND. Once he was a giant of a man, everyday was a walking holiday The sport of golf was his lifelong thrill Now he sits in his chair unable to move in spite of his will

His eyes are bright and full of life, he gives a loving look to his wife Oh, how cruel motor neurone disease can be One day he will pray to God for release from this earthly plain So that in the heavens above he can watch his golf ball soar into eternity again. Norma Graves, via email

“Olga did so much for people with MND”

I

have received my copy of the summer edition of Thumb Print and I want to thank you for including me in an excellent edition of the publication. I also wanted to say that it was wonderful to see a tribute to Olga Bannister who did so much for people living with MND in the South Yorkshire area. I got to know her quite well and she was a very special person. Philip Brindle, via email

In the summer edition of Thumb Print we featured a story about Dean Halkes, who is living with MND. Dean creates items out of copper and his work is available to buy via the website Etsy. Unfortunately in the summer edition, the wrong web link was printed and we apologise for the error. To find out more you can visit www.etsy.com and search for Halkescopperwork.

Online forum A place for people affected by MND to share experiences and support each other. http://forum. mndassociation.org Facebook www.facebook.com/ mndassociation Twitter @mndassoc

MND Connect Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 802 6262 mndconnect@mndassociation.org Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org Please let us know if you would prefer to receive your copy under plain cover.

Get involved Telephone: 01604 250505 Email: enquiries@ mndassociation.org www.mndassociation.org

www.mndassociation.org

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Thumb Print - Autumn 2018  

Thumb Print - Autumn 2018