Issuu

The magazine of the Motor Neurone Disease Association

Spring 2016

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, part of the

family

4 So what is MND anyway? Take a look inside our new guide for young people affected by MND

6 Silence Speaks Sign up today and help us do more for people with MND

9 The Association needs you! Could you be a trustee? Find out more about the role and how to get involved

11 Your stories How MND has affected your lives

14 Time for a holiday? Useful advice about how to make the most of the summer

16 Champion the Charter Our campaigners need your help

23 Let’s talk about sex Relationship advice for people affected by MND

24 Meet the gene hunters The latest news from the world of MND research On the cover: Stephen Rhodes, who is living with MND, his daughter Rebecca Godfrey and grandson Ethan get ready for Silence Speaks.

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, PO Box 246, Northampton, NN1 2PR. Reg. charity number 294354.

welcome… MND used to be a disease that few had heard of, slowly but surely devastating families. Thankfully, due to the outstanding efforts of the whole MND community over many years, this situation continues to improve. More and more people are now aware of MND, of the courage and bravery shown by those who are living with it, of the need to find a cure. But more still needs to be done. With awareness of MND at an all-time high we have a unique opportunity to bring about change by making those in authority, particularly those at a local level, aware of the diverse needs of people living with MND and those who care for them. We all have the power to influence change in our communities and in March the Association launched its latest campaign Champion the Charter on Your Doorstep to help us do just that. Building on the success of our MND Charter which was signed by more than 33,600 people, this latest campaign focuses on the need for local councils to adopt it, putting the care needs of people living with MND at the very forefront of decision-makers’ minds. I’m also delighted to announce the launch of the Association’s new Young Person’s Guide, in this edition. It’s a bright, colourful resource which, together with a new web app and improved pages on our website, will give children and young people the chance to access support and information about MND whenever they need it. These two projects alone show just how much our Association has grown and how we are now able to reach out to more and more people affected by this cruel disease than ever before. It is our duty to ensure that nobody living with, or affected by MND, ever feels alone and to make sure their voices are heard.

Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org

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

Sally Light Chief Executive

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 that those products or services will be provided, funded or available via the Association.

PS: Don’t forget to sign up to Silence Speaks! You can read more about how you can get involved on pages 6 and 7.

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news

So what is MND W

HEN somebody is diagnosed with MND it is devastating, not only fo the individual but for for ev everyone around them. F younger members For of tthe family it can be a parti particularly difficult and bewild bewildering time. Some may find it d difficult to understand what is go going on around them, o while others may not want to ask too many questions. If they try to find answers on their own, they may find informa incorrect information. To help answer their questions, with empathy and clea clear explanations, the MND Association has redeveloped its original guide for teenagers, So what is wh was first published MND anyway?? which in 2009. Put together w with the help of a group c of former young carers, the new guide is designed to help young people prepare for the changes aand challenges ahead, sugges including suggestions about how to manage difficult emotions. It features war warm images and colours app to add visual appeal, and is accessible device such as smartphones on mobile devices, and tablets.

“The conten content, layout, literacy le and th levels, the types of questions as questions asked and discussed, provide all th provide the necessary options need options needed by young people of th this age.” Olly Clabburn, a former young carer who was inv involved in the development of tthe guide said: “This guide iis awesome! It’s extremely tho thorough and really easy to read read. It carefully takes you throug through the MND journey, one step at a time.” An entire year g group from The King’s SSchool, Wolverhampton kindly

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contributed as a control group, children who not affected by MND. They helped with feedback on wording and clarity, and said: “We learnt a se lot about MND and would use ne this guide if we knew someone with the disease.” er Their teacher, Teresa Badger said: “The content, layout, literacy levels, and the types of questions asked and discussed, provide all the ne necessary options needed by y young people of this age.” Other professionals assisted, including the team at Winston’s W Wish, the charity for bereaved c children and Penny from the O Online team at Carers Trust, w which hosts the forum Babble fo young carers and Matter for for you adult carers. Penny said: “I young

anyway was really impressed by the range of content covered and I’m sure that many young people close to someone with MND will find this information invaluable.” This guide is a accompanied by wider w work across the MND A Association for children and yo young people, including ou new Young Person’s our Gr Grant and new web pages for younger visitors to our site at: w www.mndassociation.org/ you youngcarers.

Why young carers felt the guide was important

The production of this guide has been generously supported by Futures for Kids and the Edith Murphy Foundation.

More information: If they have questions or need support, young people can contact the Young Connect service:

Telephone: 0808 802 6262 Email: youngconnect@ mndassociation.org Download the guide at:

www.mndassociation.org/ ypinfo or order a printed copy through our MND Connect helpline:

Telephone: 0808 802 6262 Email: mndconnect@ mndassociation.org

www.mndassociation.org

awareness month

Coming together to make our voice even louder There’s only a few weeks to go before the start of Awareness Month in June and this year there will be even more ways to get involved. In this feature you can find out how to take part in our fundraiser Silence Speaks as well as more details about our new campaign.

Phoebe Hounsome and her mum Alison

Silence Speaks is back for Awareness Month in June and this time it will be even bigger. This year, we will be encouraging schools and youth groups to get involved and have created a new pack to help teachers and group leaders organise events for young people.

ifteen-year-old Phoebe decided to get involved in raising money for the Association after losing her nanny Joan Farrington to MND just before her second birthday. Last year she raised £270 by taking part in Silence Speaks for a week at school. Phoebe’s mum Alison explained: “We approached the school first to see how they would feel about it and they were very

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supportive. They gave her a whiteboard to use in lessons. Phoebe spoke to her form about MND, giving a presentation about the disease and her nanny. “She did amazingly well. It was good because it raised awareness among a lot of young people who didn’t have a clue what MND was and raised money too.” Hundreds of you took part in Silence Speaks last year and raised over £50,000 as well as vital awareness about the work of the Association.

ebecca’s dad Stephen Rhodes was diagnosed with MND in 2014 and last year, she took part in Silence Speaks while walking 100km from Cambridge to London.

She said that sharing her fundraising activities with her son Ethan was essential. She explained: “It’s so important to me that people understand what MND is. You have to do something. “My young son Ethan comes to support me at all of the events I do. I want Ethan to understand how important it is to take part in fundraising and do your bit as well.”

ayley decided to take part to experience first hand what it’s like to have no speech. Hayley’s dad Robert was diagnosed with MND in 2007. She said: “I did it for five days and raised £1,700. I wanted to go out and do things while I couldn’t speak to see what my Dad has to go through.

Shortened stories will raise awareness in June “Doing Silence Speaks helped us as a family. I said to Dad, ‘What are we going to do to help you?’ and it made us try to face what’s ahead together.”

LAST SUMMER YOU ROSE TO ONE CHALLENGE. SINCE THEN, MANY HAVE BEEN DEFEATED BY ANOTHER.

The Ice Bucket Challenge raised awareness of motor neurone disease – a disease that kills 50% of people within two years of diagnosis. There is no cure. But thanks to you there is now greater understanding and, for those living with MND, the knowledge they are not alone.

See what we’ve been doing since last summer at mndassociation.org #LastSummer

A poster which featured in last year’s Awareness Month campaign, Last Summer

Hayley Ladbrook and her father Robert who was diagnosed with MND in 2007

Sally Light, Chief Executive of the MND Association said: “Supporting Silence Speaks will make a huge difference to people living with MND. We know that more than 80% of people with MND experience communication difficulties before they die and for many of them it is the hardest part of the disease, being unable to tell your family you love them.”

“Phoebe did amazingly well. It was good because it raised awareness among a lot of young people who didn’t have a clue what MND was and raised money too.” Silence Speaks is more than a sponsored silence, it’s about finding other ways to communicate. Whether you are taking on the challenge on your own, like Hayley, getting your workplace involved or taking part with friends and family, we have lots of tools and information to help you, including posters and flyers, ideas sheets and golden tickets.

UR annual June Awareness Month campaign will again focus on a number of powerful stories of people affected by MND. Called Shortened Stories, a poster campaign across the National Rail, London Underground and on buses for the first time, will show the devastation cause by the rapidity of the disease and the impact on families.

“Our Awareness Month in June will use real stories to show how lives are cut short and underline the devastating impact of MND.” This year we will be sharing regional stories in the media as well as striving to gain national coverage of the wider campaign. We will also be using artists to develop work inspired by people living with MND for viewing through a special MND Association microsite and through our social media channels. While the focus is on awareness, we are aiming for the campaign to be the platform for change. Better awareness gives us a strong platform to raise further funds to support research. It also grows out voice to make our campaigns more

effective and help is improve care and special provision for people living with MND now. And we know that a public campaign also means that people affected by the disease no longer feel they are alone. Previous campaigns have included Last Summer – where we showed the reality for people living with MND a year on from the Ice Bucket Challenge. Meanwhile our Voice campaign in 2014 highlighted the fact that more than 80% of people with MND will experience communication difficulties before they die. London–based PR agency Amazon has been appointed to support the Awareness Month. Chris James, Director of External Affairs at the MND Association said: “Our Awareness Month in June will use real stories to show how lives are cut short and underline the devastating impact of MND. While primarily an awareness and PR-focussed campaign it will also be a platform to engage more people in raising funds to support research or to engage in volunteering opportunities to strengthen the charity’s campaigning voice; striving to improve care of people affected by MND across England, Wales and Northern Ireland.”

Visit www.mndassociation.org/silencespeaks to register for a fundraising pack for you, or your school or youth group or call us on 01604 611860 and start raising awareness and vital funds today. The more people who join our silence, the louder our voice will become.

www.mndassociation.org

news

Tell Oliver your stories

HD student, Oliver Clabburn is looking for help from people affected by MND for his research project. Oliver, who is a student at Edge Hill University in Lancashire, would like to hear from people who are living with MND who have recorded a digital legacy or are in the process of putting one together.

to reconnect with the person they care for or remember the person who died. He said: “In 1997, Dad started having problems with his speech and weakness in his legs. He was diagnosed with MND later on that year and within a few months after first visiting the doctor he stopped work because of his deteriorating speech and regular falls.

“My research is investigating the use of videos as a purposefully recorded digital legacy with people affected by MND. People with MND record a series of video clips about their life, memories, accomplishments and messages for their children.”

Oliver Clabburn

He would also like to speak to young people aged between 11 and 24 who are caring for a family member with MND and using a digital legacy as a means of support and those who are using a prerecorded digital legacy to support them while they grieve for a loved one. The interviews would take place either face-to-face or via Skype and would take around 30 minutes. Oliver sadly lost his father to MND and is using his research to investigate how digital legacies and how they allow people

“He became more and more reliant on his Lightwriter as he lost his voice and soon, our answering machine was the only reminder I had of what he once sounded like. “My research is investigating the use of videos as a purposefully recorded digital legacy with people affected by MND. People with MND record a series of video clips about their life, memories, accomplishments and messages for their children. These videos are then exported and given to the young person to watch whenever they need to.” For more information call Oliver on 01695 654316 or email clabburo@edgehill.ac.uk

Share your views on Association’s strategy

S the Association comes together to put together its new strategy, we are asking members to get involved by taking part in a short survey. The survey, which is available online or as a paper copy, will give members the chance to make their voices heard on the Association’s direction between 2017 and 2021. We have already been in touch with our staff, trustees and volunteers, but need the views of our members to

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complete the picture. Chief Executive, Sally Light said: “This is a really important opportunity to let us have your views as they will help to develop our thinking about the best way to work on behalf of people with MND, their families and our members in the future.” The survey is available at www.surveymonkey.co.uk/r/ MNDAStrategy but if you would prefer a paper copy please call 01604611855.

from our chair We are all part of the MND Association because we have one thing in common, we want to see a world free from MND. Whatever your reason for becoming a member, whatever your role or background, you have a very important part to play in helping the Association grow and to make sure it continues to meet the needs of people living with MND both now and in the future. We need your ideas, your experiences and your thoughts about how you would like to see the Association develop between 2017 and 2021 to help us form our strategy – the road map that will continue to drive our work forward. But perhaps most importantly of all we need you. We are currently looking to recruit five trustees to the Association’s Board, providing our members with a unique opportunity to get to the heart of what we do and help us make a difference. You don’t have to have any previous experience of working at board level or of working for a charity, we just need your skills, enthusiasm and your time. If you would like to find out more about the role, don’t miss Janis Parks’ feature opposite where she explains more about life as a trustee. If you find yourself inspired to join us, please complete the form which you’ll find inside. There’s never been a better time to make your voice heard and help us to achieve our vision of a world free from MND. Alun Owen, Chair, Board of Trustees

Could you be a trustee? Our trustees have a unique opportunity to steer the direction of the Association and to ensure it continues to do everything it can to support people living with MND, both now and in the future. In this feature, trustee Janis Parks explains what it’s like to be a trustee and why the Association needs people like you to take on this vital role.

NSPIRED by a wish to help individuals and families whose lives have been affected by MND, Janis Parks became a trustee in 2014. Her involvement with the Association began more than 20 years ago, after losing her father and uncle to MND within months of each other. This difficult personal experience led to her becoming a volunteer, with the aim of doing everything she could to ensure others facing similar challenges receive the help and support they deserve. She helped to found the West London and Middlesex branch, serving in numerous roles including Branch Chair, a position she has held since 2011. She said: “The trustee role is very important to the Association. We have ultimate responsibility for directing the Association’s work, making sure it is well-run, solvent and complies with the latest company and charity legislation. We determine the long-term aims and strategy of the Association and oversee its performance against those aims, supporting and, where necessary, challenging the Chief Executive and Directors on performance. Above all, we make sure everything the Association does is for the direct benefit of people living with MND and for their family and carers. “Anyone can be a trustee. Our board benefits from having members with a wide range of skills, experience and background. But we have two things in common – we are all volunteers and we

a background in business or finance, healthcare or research. What is most important is that you are determined to make things better for people living with MND.”

“The trustee role is very important to the Association. We have ultimate responsibility for directing the Association’s work, making sure it is well-run, solvent and complies with the latest company and charity legislation.”

are all passionate about improving the quality of life for people living with MND until, one day, a cure is found. “Personal experience of MND is very welcome. This might mean that you’re living with MND yourself, or you might be a carer, family member of friend of someone who has the disease, but is not vital. Nor is it necessary to have

Janis explained that the trustees meet formally as a board four times a year and also at board committee meetings. There are always papers to read ahead of these meetings but they are received at least a week beforehand. She said: “After 20 years of volunteering with the Association, I thought I knew all there was to know. But it wasn’t until I became a trustee that I realised the depth and complexity of the organisation. It’s fascinating. I’ve enjoyed meeting people from many different backgrounds and, while we don’t always agree with each other, our debate can be stimulating. Ultimately, we work as a team, we listen to each other’s opinions and, once a decision is reached, we all stand by it. “Being a trustee is incredibly interesting and rewarding. I encourage everyone to consider it.”

Thumb Print or you can visit www.mndassociation.org/trustees2016. You will be asked to supply some information about your knowledge and experience and you will also be required to supply a recent photo.

The closing date for nominations is June 10, our members will vote and the candidates will be informed of the result prior to the AGM in September. Our new trustees will formally take up office at the AGM on 10 September.

Janis Parks

What happens next? If you would like to apply to become a trustee you must already be a member of the Association and be nominated and seconded by existing members. You can apply by completing the form which can be found in this edition of

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news

Maguire family celebrate awards

Paula and Robert Maguire, pictured with their daughters Kelsey and Megan

An evening of entertainment

Pictured from left to right are Jonathan Atkinson, Jenny Hill and Dr Richard Wood

TRANGER Than Fiction was the title of an evening of poetry, songs and short stories held in North Yorkshire. Mulled wine and refreshments were also served during the concert, which was staged in Ugthorpe by Jenny Hill, Jonathan Atkinson and Dr Richard Wood. The evening raised £680 for the Association.

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T was very much a family affair for Paula and Robert Maguire when they were presented with their British Citizen Awards. The couple from Wakefield travelled to Westminster alongside their daughters Megan and Kelsey who watched proudly as they collected their awards in recognition of their fundraising achievements. Paula and Robert launched the Ice Bucket Challenge for MND in August 2014, helping to raise over £7 million for the Association. Over the years the family have also taken part in countless other fundraising events in memory of Paula’s uncle Stuart who died from MND in 2009. Paula said: “The recognition is wonderful but really it’s all about raising money and awareness for the MND Association – when we first started raising money that was the most important thing and it still is. Our daughter Kelsey nominated us for this award and that made it really special.” Last year, Paula received a Pride of Britain Award and the couple were also presented with an award from the Institute of Fundraising in recognition of their work.

Summer raffle tickets are on sale now

F you missed out on a prize in n our Christmas raffle, why not give our Summer raffle a try? Almost £90,000 was raised from the Christmas raffle, an incredible amount which will help the Association support people living with MND and those closest to them. We would like to pass on our grateful art and thanks to everyone who took part congratulate our winners including Sean O’Donoghue who won the first prize of £4,000, Heather Ambrose who won £500 and Suzanne Prince who won £200. Taking part in the Summer raffle couldn’t be easier. Simply complete the reply slip which can be found in this edition of Thumb Print and return it in the freepost envelope, along with the ticket stubs, by Monday 27 June and the lucky winner will be drawn on Monday 4 July.

Each ticket costs just £1 and the more sold the bigger difference we make for people living with MND. Additional tickets are available by calling our hotline 0345 6016936 or via email at raffle@mndassociation.org. You can also enter online by visiting www.raffleentry.org.uk/mnda Regulations mean that entry is open to all UK residents excluding those in Northern Ireland, Jersey, Guernsey and the Isle of Man.

Singer with MND releases fundraising album

Singer Trish Abey pictured with her friend, musician Richard Gleave

INGER, Trish Abey, who was diagnosed with MND a year ago, has released an album of songs to raise money for the Association. Trish, 62, from Bedfordshire was determined to record the album called Is That It? as a legacy to pass on to her family and friends after she was diagnosed with MND in April 2015. Since then, Trish has decided to sell copies of the CD, which features a collection of 21 of her favourite songs, to raise money for the MND Association in recognition of the support she has received. Work on the album, which includes Trish’s versions of classics such as Walk Away Renée and Georgia On My Mind, began shortly after she was diagnosed and was completed in October before her voice became affected.

She said: “I have always enjoyed singing and used to sing with a group of friends. We used to have impromptu singing sessions in nearby villages.

“The support I have received from the Association has been tremendous. I want to sell as many CDs as I can so we can raise as much money as possible.” “I love all kinds of music from classical through to jazz, folk and blues. My love of folk and blues is reflected in the album. None of it would have been possible without the support of Richard Gleave who worked with me on the album and is an incredible guitarist and a personal friend.” Richard, who owns Golden Riddy Music,

supported Trish throughout the recording of the album, which took place in his studio and more recently, when Trish’s mobility became affected, on recording equipment in her sitting room. Musicians were then brought in to add their parts to the album. She said: “Being diagnosed with MND has been like being on an out of control train. We managed to get the recording completed before my voice became affected. I now have equipment to help me and I have started banking my voice. I also rely on a wheelchair. “The support I have received from the Association has been tremendous. I want to sell as many CDs as I can so we can raise as much money as possible.” To order copies of Trish’s CD, visit her website, www.frenchlessons77.com www.mndassociation.org

your stories

Charlie tells the story of his life Anne Darcy’s father, Charlie, has been living with MND for more than three years. Here, she explains how a book encouraged him to look back over his life and share his fondest memories.

Y Dad was diagnosed with motor neurone disease just before he turned 70. He used to run four miles every other day and did weight training in his garage. The rest of his life consisted of his wife, seven children, three sons-inlaw, one daughter in-law and eleven grandchildren. By the time he was diagnosed with MND he had retired from taxi driving. He studied for a diploma in counselling half a century after leaving school. Dad is now wheelchair-bound and has almost completely lost the use of his hands. He has some mobility in his neck and sits forward with a lot of effort. His voice hasn’t been affected. Recently, we all went to the day hospice he attends to be introduced to end of life planning. Dad was not keen, but was clear he wanted to be there if the rest of us were going to be talking about him. It was difficult and emotionally exhausting, but it was necessary and helpful. Dad is accepting of his illness, and he quietly fights it every step of the way. Coming up with ways of maintaining his independence seems to keep his mind occupied. The only references he makes to MND is to quip that Stephen Hawking is proof that MND is caused by exceptional brain power draining away your muscle strength! I remember saying once that Mum and Dad’s personalities complement each other. Without Mum’s ability to accept things as they are, and her hard work as his carer, I don’t think he would be coping at all. After the meeting, I remembered Dad had shared some thoughts about life and death. I had bought him a book called From You to Me, which guides you through writing a life story for your children. Dad persisted with it, even though at that stage he could no longer write but used a keyboard to type slowly. It is lovely to look back now at what he wrote

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and realise that MND did not feature once in his life story. He wrote about his parents and his childhood friends, as well as his favourite music, film stars and the moment he fell in love with Mum. Towards the end, it asked what he would want to have as his epitaph. His final answer was: “He did not go gentle into that good night, and was always a work in progress,” but I prefer this earlier version: Here lied the bones of Charles Malone Born confused and all alone. I started out to get it right So I looked for the perfect archetype. But after some time I came to see That it would be better to be just me For I have learned and now profess We must each go through our own process Though we all start the same in this human race We don’t all go at the very same pace For some may fall or are pushed into traps That end in horrendous handicaps All we want is to love And that doesn’t come from up above Despite some clerics who try to make it look It’s built with a crane and not a sky hook Some people love you and you don’t expect it So just return it and accept it Here’re some things you should never doubt You’ll never get in what you never give out And to be as free as a bird in flight Have no need to control, possess or be right People love you because they’re good and true And it has not a lot to do with you Some will look hard and try To see a splinter in your eye For love and malice in or out of season Are for the lover or sceptics reason

The photographs Charlie selected to accompany his life story

In my case I have found it hard To give myself the right regard And if I can’t I will be offending Offering it to others is then condescending This doggerel is now long and laboured For length and wording I have favoured For one thing and that alone To get myself a large stone So even in the earth below I have a very large ego.

Caring leads to a new chapter for Gerard Gerard Blay from Croydon, South London is a carer for his father, Alan, who is living with MND and his mother, Edith who has vascular dementia. Here, he explains how his life has changed since becoming a carer and how it unexpectedly led to a new career. Gerard, inset, and his parents Alan and Edith

IKE an increasing number of people in today’s ageing society, I found myself taking on caring responsibilities for my parents Alan and Edith. What wasn’t so common was that they were both suffering from neurological diseases. Caring is an increasingly demanding role. Just when you think you have got to grips with things, there is some change, some new addition to the routine. At first you can cope, but it creeps up on you slowly, so without realising, you find you are struggling in more ways than you had realised. We were lucky that someone from Croydon Council cared enough to sit us down and talk things through with us. Without the district nurses, local GPs, council and carers, who have helped us over the years, it would have been impossible to cope. My brother comes down to stay when we are able to get away for a holiday. Key to keeping our spirits up is the ability to get a sit-in carer occasionally so we can do things as a family, with my wife and two children. Initially, when my parents moved in with me and the family, I managed to keep

my PR work going for a few years, but I soon found I was unable to juggle caring for them and working as a PR/Marketing consultant. Something had to give, so I had to let my business die away to enable me to focus on them.

“Caring is an increasingly demanding role. Just when you think you have got to grips with things, there is some change, some new addition to the routine.” I found that life and work had to fit around caring, it simply didn’t work the other way round. I couldn’t predict when I would have to call the doctor in, or accompany one of my parents to the hospital, so I found myself having to cancel meetings. Before long, I became wary of committing to new business that I knew I might struggle to handle in the way I would have wanted to. Pretty soon, I found I didn’t have a business. As the caring continued and the PR work didn’t, I assessed my situation and

decided that writing a book could be something that would utilise the skills I had developed, and was something that I could fit around the caring. Several years earlier, I had started to write a book for pleasure but hadn’t progressed too far with it. I decided to make a go of writing, and managed to get the book into reasonable shape. I got some great advice from a friend of a friend who works with screenplays. He really enjoyed my book, Mind Whispers, and said he thought it would make a good film. He gave me some very useful advice to tighten the manuscript, and said if it sold well as a book I should get in contact with him to discuss the possibility of securing a film deal. Since then someone else has suggested I should talk to them regarding film rights too. As I was proof-reading the manuscript, I got talking to a friend who mentioned that he knew a publisher he rated very highly. I submitted my copy and was thrilled when they said they were interested in publishing it. The book is now available on Amazon and from most bookshops. www.mndassociation.org

feature

A helping hand when want to get W

ITH the summer months on their way it’s a good time to get out and about to enjoy the better weather with friends and family. For people living with MND this can be much more challenging, but with the right guidance and some careful planning, days out and even holidays are all within reach. Liam Dwyer is living with MND and is currently planning a holiday to visit friends in Salou, Spain this summer for a wedding. While he admits arranging a holiday is now much more difficult and more costly, he still enjoys travelling.

He said: “I used to be very fit and active but my weight rocketed after losing my mobility to MND. “Being tall and overweight makes it difficult for people to put me onto an aircraft and it is very uncomfortable. “After a few bad experiences I stopped flying in 2013, but last year I found out about the Eagle 2 Lifter and got invited to test it. An Eagle 2 Lifter is a hoist system to help people with disabilities get to their seat on a plane without being physically carried. That was all I needed and started flying again. The first thing I did was find out how I would get on with travel

insurance and we have had two great holidays since. “Planning our holiday to Spain this year has put me out of my comfort zone as I know Spain doesn’t have the Eagle Lifter. I got a UK company to organise the holiday for us, and I asked to see photographs of all the important aspects of the hotel. They have booked a profiling bed, a mobile hoist and a commode shower chair for the hotel room. “The airport transfers were very expensive so we are going to use the train, or at least that is the plan. Being disabled will add a lot of extra cost to the holiday but I still think it is worth it.”

Liam Dwyer and his wife Anna travelled to the Grand Canyon in November last year

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you out and about Liam advised anyone interested in booking a holiday to read the Association’s travel and holiday information which can be viewed on our website www.mndassociation.org/mndsheets.

“Being tall and overweight makes it difficult for people to put me onto an aircraft and it is very uncomfortable.” For more information and advice about places to visit, websites with reviews from disabled visitors are growing in popularity.

Wheelchairworld.org is a website which was set up by Susie Twydell who was diagnosed with MS at the age of 29. She explained that before her diagnosis she had never given travel a thought and had visited more than 60 countries. But now things are very different and each trip takes a great deal of preparation. She said: “Every single one of us wheelchair users that travel has an amazing amount of knowledge and useful information about the destination. Every time I have gone somewhere I have found a few snippets of online information put on there by other wheelchair users, so I had a great idea. Create a site that brings all this information together, links to all of these really useful reviews and resources and also provides a place for people to add more reviews if they wish.”

Euan Macdonald

One of those websites, Euan’s Guide, has been created by Euan Macdonald who is also living with MND. Euan was diagnosed in 2003 and found that as a powerchair user it was difficult to find accessible places to visit. He said: “I realised that I couldn’t be alone in my search. I knew other disabled people would be able to recommend accessible places to go, and I was very keen to hear from them, their families and carers.” The result was Euan’s Guide – www. euansguide.com – a disabled access review website and app where people share their own experiences of disabled access wherever they go. Euan said: “Euan’s Guide aims to be a friendly, honest and empowering alternative to hours of web searching and phone calls, and most importantly we hope it will remove the ‘fear of the unknown’ when visiting a venue for the first time.”

Susie pictured getting on to a plane in Brazil

She said that all of the wheelchair review websites were linked, making it even easier to find the information you need. More information about things to consider when travelling are available from our factsheet 12C: Travel and Transport and 12D: Planning a holiday which can be downloaded from our website or ordered via MND Connect on 0808 802 6262. Do you have a holiday planned this year? Why not take a copy of Thumb Print with you, take a snap, send it to the address on page 3 and you could appear in the next edition.

Campaigners unite!

The Association’s Campaigns Contacts pictured at the event in March

HE Association’s Campaigns Contacts came together in London in March to connect, share experiences and ideas and receive information and materials to support their activities. During the day the campaigners, who are the driving force behind our national and local campaigns, were briefed on our new Champion the Charter campaign and also had the opportunity to put forward ideas for the new strategy. The day was a great success and it was fantastic to see so many enthusiastic volunteers coming together to create change for people living with MND and their families. We were pleased to welcome several new people to our growing team, as well as to see some familiar faces. To find out more about how you can join our team of passionate campaigners please visit www.mndassociation.org/ campaignwithus

To find out more about the Association’s Champion the Charter campaign, turn to pages 16 and 17.

Still time to sign up for cycle

HERE is still time to sign up for the London to Brighton Cycle which is taking place on Sunday 11 September. There is a £40 registration fee and a minimum fundraising pledge of £100. For more information, or to register, visit www.mndassociation.org/ brightoncycle or email stephanie. steward@mndassociation.org www.mndassociation.org

campaigning

Could you help the Charter? We need more councils to adopt the MND Charter to ensure the needs of people living with MND are met.

OULD you help us Champion the Charter on your doorstep? We need our members and volunteers to talk about the MND Charter with their local councillors. The MND Charter is a five-point document which describes the care people living with MND and their carers should expect. Last summer, our campaigners presented the Charter, which had been signed by 33,630 individuals and organisations, to 10 Downing Street and now we want it to be adopted by councils across England, Wales and Northern Ireland. By encouraging more councils to get involved, our new campaign Champion the Charter will help make sure that people living with MND receive the right care, in the right place, at the right time in your local community. So far, 16 councils have adopted the Charter, and a further 32 councils have been approached to adopt it. But we need more to sign up. We need you to speak to your local councillors about MND and ask them to get their local council to adopt the Charter. By adopting it, your council will commit to promoting it with councillors and colleagues working for, and with, the council. To get involved please take a look at our new campaign website www. mndcharter.org. Here you will find some exciting features including the interactive map, quick and easy ways to get in touch with your councillor and lots of useful resources to help you take part.

www.mndassociation.org

champion Councils which have adopted the Charter so far

Berwick Town Council

Belfast City Council

Colin’s story

Redcar & Cleveland Council

Blackpool Council Wakefield Council

Rochdale Council

Tameside Borough Council Trafford Borough Council Sheffield City Council

South Holland District Council

Bridgend Borough Council

Oxford City Council Swindon Borough Council Kent County Council

Portsmouth City Council Torbay Council

Promotional material

A guide for councillors (England and Wales)

Life with motor neurone disease (MND) is hard. As a councillor you can help to make it a bit easier. You can champion the MND Charter

30%

of people with MND die within 1 . 2 months of diagnosis

The MND Charter The journey so far…

MND Charter: the journey so far...

themndcharter

Motor neurone disease: a guide for councillors

Achieving quality of life, dignity and respect for people with MND and their carers

This short guide is designed to help you understand motor neurone disease (MND) and how you can support your constituents with MND.

Guide to MND for councillors

Champion The Charter: a guide for councillors

The MND Charter full document

Colin Hardy is from Northumberland and joined the MND Association as a volunteer Campaigns Contact in 2014 following the death of his sister Pauline, who had MND. Working closely with the Association, Colin initially approached Berwick-upon-Tweed Town Council in 2014 to ask them to support and adopt the MND Charter. Colin said: “Asking councils to adopt the Charter was so important to me, not only as a way to raise awareness of MND, but also to highlight the issues and difficulties that people living with MND in Berwick were facing. “I asked individual councillors to do everything in their power to assist people living with MND residing in their constituencies to have the access they needed to care, adaptations and communication equipment. “I have already been able to see the difference the MND Charter has made in my area. My council and councillors are very supportive and Berwick town councillors have taken part in various fundraising events including Ice Bucket Challenges and pub quizzes. “To anyone else who is interested in getting their local council to adopt the Charter in 2016, I would say that it’s no big ask. Most people would see the Charter as a minimum requirement in this day and age and there’s a great amount that can be gained from getting your local council on board.”

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campaigning

“If we all do a little we With elections in Wales and Northern Ireland this year Campaigns Manager Tim Atkinson explains the process and how you could help to make a real difference.

N 2016, we’re looking to increase our MND campaigning powers in Wales and Northern Ireland – but we can’t do it without your help. Every email sent helps us reach politicians in a position to influence MND care and every local campaign volunteer is a local voice for change. In short, if we all do a little then we can change a lot. Where better to start than with the ern elections to the Northern Ireland and Welsh Assemblies in May. These elections matter more than you

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might think. Decisions about health and social care are mostly taken in Belfast and Cardiff rather than in Westminster. We’ve launched two new campaigns – one for Northern Ireland and one for Wales – asking Assembly election candidates to commit to championing MND. For some politicians, this may begin a journey of sympathy and support for our cause throughout the their career. To help them understand the BeT cl im impact of MND, we’ve picked a m n re relevant local issue to lead on in N Northern Ireland and Wales.

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Northern Ireland: Every Breath Counts

Wales: MND Won’t Wait

The starting point for our Every Breath Counts campaign is the fact that respiratory failure is the most common cause of death in people with MND. That means specialist health professionals play a vital role in care as breathing becomes more difficult. Every Breath Counts is calling for an increase in the provision of respiratory care in Northern Ireland – especially in the community – to improve quality of life and reduce unplanned hospital admissions.

Our MND Won’t Wait campaign emphasises that a timely and accurate diagnosis is essential for the right care at the right time to occur. In 2013, we found that one in five people with MND in Wales waited longer than a year between first visiting their GP and seeing a neurologist for diagnosis.* Though some progress has been made, three years later, we still believe there remains much to be done to raise standards and awareness.

For more information including our briefing paper see www.mndassociation.org/nielection

For more information including our briefing paper see www.mndassociation.org/waleselection * Source: MND Association, Improving MND Care 2013

www.mndassociation.org

can change a lot” How you can help

Keep in touch with us

We know that politicians respond best to local people telling them about MND in their own words, so we would really appreciate your help in Northern Ireland and in Wales in sending them a friendly message, asking them to champion MND. And it only takes five minutes – all you need to do is go to the homepage for the campaign and send an email to candidates in your area.

Do you have questions about the campaign or responses from candidates you would like to share? Maybe you are interested in local campaigning. Contact Campaigns Manager Tim Atkinson, at tim.atkinson@ mndassociation.org or 01543 415121.

www.mndassociation.org/ everybreath www.mndassociation.org/ mndwontwait If you have a little more time, you might want to personalise your email or adapt one of our template letters, available from the same page.

Join in on Facebook and Twitter Please do also raise awareness of MND in Northern Ireland and Wales by retweeting and sharing our campaign news to your followers and friends.

Follow us on Twitter at @mndcampaignsNI and @mndcampaignsWLS Use the Twitter hashtags #everybreath #mndwontwait Like us on Facebook at www.facebook.com/ mndcampaigns

Your campaigning stories: Please send your stories and photos to editor@mndassociation.org or Editor, Thumb Print, MND Association, PO Box 246, Northampton NN1 2PR

Wheelchaircars.co.uk

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Tel: 0161 793 5934 Full details on our website, www.wheelchaircars.co.uk

www.mndassociation.org

fundraising fundraising

Powering on to find a cure After losing his Mum, Genifer to MND, Steven Smith became focused on raising as much money as possible to help find a cure. He’s raised £116,000 so far and has no intention of stopping.

OR Steven Smith, fighting MND is personal. “If I’m honest, it really scares me,“ he said. “I lost my Mum, Genifer, to MND when she was 60, she was diagnosed at 58. I’m approaching that age now and it makes you think. “It’s a horrendous, disgusting disease, as anyone who has been close to it will know and I won’t stop until a cure is found.” It’s this single-minded approach which has driven Steven, an entrepreneur from High Wycombe, to raise an incredible £116,000 for the MND Association by organising a number of Rave and Ride events. Rave and Ride brings together teams of indoor cyclists who take it in turns to ride while some of the biggest DJs in the world play sets, turning the whole event into one big nightclub. In May, Steven, who has worked in IT and once owned his own nightclub, will host his biggest event yet at Stoke Park in Buckinghamshire, where it is hoped two world records will be broken. The first will be for the most money raised during an eight hour period at a fundraising event, and the second will relate to the amount of power generated by the cyclists themselves. He said: “It’s going to be massive and I am working to get as many celebrities as I can along on the day. I’m hoping

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we will raise around £100,000. The money I have raised so far has been used to fund a PhD student at the Oxford Centre for Research and Care at the John Radcliffe Hospital to support their research into MND. “The money from the event at Stoke Park will fund another student so we can get closer to a cure. “When I went over the £100,000 mark at a Rave and Ride event in Gravesend, someone came up to me and said, ‘Well that’s it – you must be finished now?’ “I said, ‘There’s still no cure,’ and I won’t rest until we find it.” Steven was also keen to point out that people wanting to join in don’t have to be Olympians or serious cyclists, as the emphasis is very much on teamwork and having fun. He said: “There will a big team of professionals on hand to offer support and keep everyone hydrated and safe so the cyclists can concentrate on teamwork and having fun.” To donate during the eight hour event between 11am and 7pm, please visit www.justgiving.com/raveandride, download the JustGiving app or text 70070 – RAVE60 - £ any amount. If you are interested and would like to join in, there’s still time to register, visit www.raveandride.com for more information.

Jez gets shirty against MND

EZ Denton has been getting a bit shirty recently – and his friends and family don’t mind one bit! That’s because Jez, from Banbury in Oxfordshire Jez pictured in one of his has been flamboyant outfits taking part in an unusual challenge to raise money for the MND Association. For the past 204 days, Jez has worn a different shirt every day and the more colourful and flamboyant they were the better. The challenge was the idea of wife, Sharon who said he had too many shirts he didn’t wear. She agreed to pay £1 for each shirt he wore and fundraising grew from there. The challenge also raised money for the Association in memory his grandmother who died from MND in the 1980s. Jez explained: “It was coming up to the 30th anniversary of her passing away and I decided I wanted to give something back. “The shirts have been donated by all sorts of people and some have come from charity shops.” Jez managed to raise £2,171 and has now vowed to continue with his fundraising efforts, with an annual Get Shirty Day on June 1.

Free phone Connect number is now live

Entrepreneur Steven Smith who will host his biggest fundraising event to date in May

UR new MND Connect free phone number is now live. The number to call is 0808 802 6262 and it is free for those using mobile phones, including those on contract or pay as you go, and landlines. Our MND Connect service offers advice, practical and emotional support and information about other agencies and organisations who can help people living with MND and all those affected. The helpline is available from 9am to 5pm and 7pm to 10.30pm Mondays to Fridays. Help is also available via email at mndconnect@mndassociation.org www.mndassociation.org

care

Kennedy’s clinic is ‘making a real difference’

Caring and MND: support for you

HE launch of a weekly clinic at the National Hospital for Neurology and Neurosurgery in London is making a real difference to the lives of people living with Kennedy’s disease, so says Katy Styles, whose husband Mark is living with the disease. Katy, who campaigns on behalf of the MND Association said: “We have been to the clinic twice now and it is wonderful to be around people who understand Kennedy’s. “Having said that, it has also been difficult as we have been forced to face the realities of the disease head on.” Kennedy’s disease is a rare condition which affects an estimated one in 40,000 people. It is hereditary and mainly affects men. It has been a busy time for the couple, who have been helping the Association to campaign on behalf of people living with MND. In December, the couple attended the All-Party Parliamentary Group on MND’s meeting in Parliament to discuss access to benefits for people living with MND. The couple spoke about the financial impact of being diagnosed with a disease like MND and emphasised the importance of financial support. Earlier this year, the couple also attended the Disability Benefits Lobby in Westminster and Mark has recently become a Patient and Public Voice member of the Rare Disease Advisory Group for NHS England. For more information about the clinic email sbma@ucl.ac.uk or call the hospital on 020 3448 3899. For information about Kennedy’s disease call MND Connect on 0808 8026262 or visit www.mndassociation. org/publications

www.mndassociation.org

Caring

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LONGSIDE our new guide for young people affected by MND we have re-developed our guide for family and unpaid carers, who support someone living with MND. The new format of the guide Caring and MND: support for you focuses on carer wellbeing and how to help carers prepare for the challenges that may lie ahead. The content explores how the title of ‘carer’ can help open doors to support and services. The updated publication also covers the new Care Act in England and ongoing social care reforms in Wales and Northern Ireland. The aim is to help carers become more aware of their rights and how to access a carer’s assessment. This can lead to vital support, as the demands of care with MND can increase over time.

“I particularly like the writeon forms at the back and wish these had been available when my husband and I started on the MND path.” Sonja Woodhouse, Commissioning Manager Carers Lead, Northamptonshire County Council was delighted with the guide and felt that it represented, “A fabulous job of simplifying very comprehensive, sometimes confusing legislation – well done. I would like to share the information with my providers, as I think it is an excellent template to

help carers, whoever they are caring for… well-written and easy to understand.” Carers who kindly helped with the testing of the guide recognised how the content may help carers to seek support when needed, “This information is so useful. I think that sometimes people take on a caring role, but don’t realise they are carers and don’t get the help that is available to them.” Pages at the back of the guide help carers to plan for appointments and assessments, “I particularly like the writeon forms at the back and wish these had been available when my husband and I started on the MND path.” Available in book format, the new guide can also be downloaded as an interactive PDF or as separate sections. See: www.mndassociation.org/carerguide Printed copies of the guide can be ordered from our MND Connect helpline: Telephone: 0808 802 6262 Email: mndconnect@mndassociation.org The MND Association would like to thank The Pixel Fund, The Hedley Foundation and the Hazel and Leslie Peskin Charitable Trust for their kind support, which has made the production of Caring and MND: support for you possible. Turn to pages 4 and 5 for information about our new Young Person’s Guide. So what is MND anyway?

Let’s talk about sex

LTHOUGH MND does not directly affect fertility or sexual function, sexual expression can become more difficult if movement, mobility, or speech and communication are affected. Having an illness or disability of any kind can also affect how we feel about ourselves. Anxiety, fear and depression can reduce interest in sex, and fatigue with MND may affect sex drive. MND can cause normal routines and lifestyles to be turned upside down, and the balance of relationships can change. For some couples, the sexual side of a relationship becomes less important, while shared activities and time together become more valuable. Love-making could be very important to you and, after diagnosis, can become even more so. If your sex drive does change in any way, it is not surprising. MND can cause strong emotions, and you are likely to need time to adjust. MND causes change, which can make you focus on things that are no longer the same. Lisa Cousins, care information developer at the MND Association says, “Medical equipment, such as noninvasive ventilation or tube feeding, can cause concerns about intimacy. Selfesteem and sexual confidence can be affected. Our information about sex and relationships, written by experts, may help provide reassurance.” It can also help to discuss your feelings with your partner, a close friend or

If you have concerns about sex and relationships after being diagnosed with MND the Association is here to help. In this feature, we explain the changes you or your partner may experience and some of the information which is available. someone from your health and social care team. If you feel less attractive, it can be easy to assume your partner is less attracted to you. You may wait for them to initiate sex, while your partner waits for you to show interest to avoid putting you under pressure. This can lead to misunderstandings. Open communication and letting your partner how you feel about them is important in maintaining intimacy. If you value the closeness of kissing, hugging and cuddling, make sure your partner knows this. They may value this more than they used to. Accepting external support for some of the care may help you both hold on to what was unique about your close relationship before MND. When a partner becomes a main carer, it can bring couples closer together. However, some carers have told us how it causes strain as roles shift and change, “It is easy for the person

with MND to withdraw and for the carer to be preoccupied with caring. It’s important to take time to remember to show each other that you still care.” Discuss how to create times within your day to spend quality time together. Something as simple as going to bed at the same time can provide opportunities for intimacy and companionship.

“Medical equipment, such as non-invasive ventilation or tube feeding, can cause concerns about intimacy. Selfesteem and sexual confidence can be affected.” Ask a health and social care professional if you have concerns about sex. They may worry about causing offence or being intrusive if they raise the subject themselves, but if you ask for help, they can advise or refer you to a specialist. For more detailed information about sex and relationships with MND, see our information sheets: 13A – Sex and relationships for people living with MND 13B – Sex and relationships for partners of people living with MND You can download these from www.mndassociation.org/publications or order printed copies from MND Connect on 0808 802 6262. They can also provide you with further information, support and guidance. www.mndassociation.org

research

Meet the gene hu For the first time the MND Association is funding four non-clinical fellowships and two of them aim to identify possible genetic links in people living with MND. Meet two gene hunters Dr Ashley Jones and Dr Russell McLaughlin and find out more about their work.

R Ashley Jones works at King’s College, London. His fellowship builds on similar research he carried out funded by the ALS Association (USA) and the MND Association. Dr Russell McLaughlin, from Trinity College Dublin, has just finished a PostDoctoral fellowship with the ALS Association. Our funding of their work emphasises that developing researchers is an international effort, and that collaboration is key to keeping talented individuals working in MND research.

Their mission For approximately 5-10% of people living with MND, the cause of the disease is primarily due to a mistake within the genes. However, for the majority of cases of MND, genes are thought to play a more subtle role. However, it is becoming increasingly difficult to find these genes. The current method of identifying disease-causing genes, called whole genome sequencing, involves comparing people’s genetic codes to identify similarities or differences. This has pinpointed some of the genes associated with MND.

“This project may answer questions over if populations with a certain ancestry seem to be at greater risk of developing ALS than others. Rare genes that might be responsible are harder to find, as these genes are almost invisible to traditional gene hunting methods. On average, every person has between 40 and 100 rare gene variants (versions of a gene). Because of their rarity, it is hard to work out which, if any, of these variants may be associated with disease.

www.mndassociation.org

You could compare MND gene hunting to panning for gold. It is easy to spot the large gold nuggets by eye, representing the MND genes found by current methods, but you need to use a different technique to separate the small flecks of gold, the rarer disease-causing gene variants, from the gravel and dirt, or the ‘normal’ rare gene variants. Both Ashley and Russell will be using new approaches to find these rare MND causing gene variants.

Why do MND genetic research? There is now evidence that there is a significant genetic aspect to all MND, regardless of family history. Studying genes can help us understand their influence in the cause, onset, and the speed of progression of MND. It can also help researchers develop models for studying MND and ultimately in developing new treatments.

Project MinE Project MinE is a global project hunting for MND-causing genes. The UK arm of this project is using samples from our MND DNA Bank, and is one of the main research areas that received monies raised through the Ice Bucket Challenge. So far 768 DNA Bank samples from people with MND, and samples from healthy people for comparison, have been sequenced, and a further 672 have been sent for analysis this year.

Dr Russell McLaughlin

Russell’s objective: To identify the genetic causes of MND in specific populations Russell will study the impact of ancestry on the development of MND. Sometimes looking deeper into a family tree throws out unexpected relations, such Benedict Cumberbatch as King Richard III being very distant relatives. Russell will sequence the genetic code of over 1,000 Irish individuals, 700 of whom have ALS (amyotrophic lateral sclerosis, a form of MND). Using these, Russell will construct large family trees. It is likely that these will link ALS patients previously assumed to be unrelated. These ‘superfamilies’ will give researchers a greater chance of identifying rarer gene variants linked to ALS development. Talking about this research, Russell said: “This project will help to answer questions

nters about whether populations with certain ancestries might be at greater risk of developing ALS than others. “It could also help explain if the geographical differences in risk of ALS seen throughout Ireland are linked to genetics, or down to local environmental effects. “The sequencing data from this study will also contribute towards Project MinE and will be used to discover genes that cause ALS.”

“Our invaluable partnership will defeat MND”

OT all people with MND show the same symptoms in a physical examination, and the rates of disease progression may also vary substantially. However the reasons for this are poorly understood. The ability to measure disease activity and progression in MND requires the identification of biological markers – these are called biomarkers. The Oxford Study for Biomarkers in MND (BioMOx, www.biomox.net) began in 2009, funded through the MND Association’s Lady Edith Wolfson Fellowship Scheme in conjunction with the Medical Research Council (MRC). In non-therapeutic research like BioMOx, there is no direct benefit to the participants, because no new treatment is being offered. However, the enormous enthusiasm of patients, their friends, and family to actively contribute to the common goal of a world free from MND has been very striking to all the researchers working on this study. Part one of the study involved over 70 participants with MND who underwent tests every six months for up to two years, along with a similar number of healthy individuals who participated on one occasion for comparison.

Through collaboration with Dr Andrea Malaspina’s biomarker programme at Queen Mary’s University London, BioMOx helped to confirm neurofilaments, which are breakdown products of nerve cells, as a leading biomarker for MND. The levels of neurofilaments in spinal fluid and blood show promise not only as a test to aid diagnosis, but also as a tool to monitor future treatment effects. Biomarker development is not the only research area which depends on the involvement of people affected by MND. Patients donate skin samples to help with stem cell research, and give information about lifestyle and environmental factors which may affect the development of MND. To all those who gave their time and effort so enthusiastically, and to those thinking of doing so in the future, thank you on behalf of MND researchers across the globe who are all using the information gleaned to further the development of tests and treatments for MND. It is through invaluable research partnerships between scientists and those affected by MND that will defeat this disease. Prof Martin Turner Lady Edith Wolfson Fellow

Dr Ashley Jones

Ashley’s objective: To prioritise rare genes to investigate further Ashley will begin by creating a list of candidate MND-causing rare genes using information on how motor neurones develop, together with data from Project MinE. This will guide him towards rare genes to prioritise for further investigation, by studying post-mortem brain tissue and DNA sequencing. Ashley explained: “My research will examine how the genome (the body’s genetic instructions) interacts with itself in the motor cortex of the brain, and how this interaction contributes to MND. Identifying these interactions will give us promising candidates for gene-based therapies.”

The BioMOx team (clockwise from bottom left): Martin Turner, Malcolm Proudfoot, Ricarda Menke, Alex Thompson and Liz Gray

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campaigns

NICE guideline on MND is published

HE National Institute for Health and Care Excellence (NICE) published its guideline on MND on 24 February. NICE is an independent body which provides a range of advice on costeffective healthcare to the NHS and those who use it. This guideline comprehensively sets out best practice across many aspects of care for someone with MND and will prove invaluable in making sure that care is relevant and appropriate. Chief Executive, Sally Light, said: “The MND Association strongly welcomes the publication of the NICE guideline on MND. This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters. It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered. It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers. We look forward to working with our members and

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supporters to ensure the NICE guideline on MND has a positive impact on the care and support available to people with MND, their families and carers in England, Wales and Northern Ireland.”

“This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters. It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered.” “After careful analysis we will be looking at how we can best support implementation of the guideline over the months and years ahead. This will include tools to help professionals understand what care they should make available to people with MND and tools to help people with MND and their families understand what care they should have access to. We

look forward to working with our members and supporters on this piece of work.” The new guideline covers MND care from referral and support at diagnosis through to organisation of care and includes managing symptoms and planning for end of life. It urges a joined-up approach where different specialists work together to improve overall quality of life, this ensures the availability of appropriate support to help people cope with a disease that can progress rapidly. Following on from the publication of the guideline, a quality standard is currently being developed. The quality standard includes shorter, more accessible information and will provide ways of measuring whether, and by how much, MND care has been improved. The Association has responded to NICE’s consultation on the quality standard which is due to be published in August. You can find more information on our website: www.mndassociation.org/ niceguideline

Picture by Myles Fisher

Mixed outcomes from debate on welfare bill

The Association’s Campaigns Contacts travelled to Westminster to make their views known about The Welfare Reform and Work Bill

EOPLE living with MND who receive Employment and Support Allowance (ESA) will be £250 worse off by 2019/20 – but carers will be exempt from the benefits cap. The news comes after The Welfare Reform and Work Bill was debated

in the House of Lords. Before that 42 parliamentarians heard the views of the Association’s Campaigns Contacts as part of our Make Benefits Work for MND campaign. Organised by the Disability Benefits Consortium, the lobby event gave our

campaigners the opportunity to come face to face with MPs and voice their concerns about the proposed changes. To find out more about our campaign and what we’re doing next visit www.mndassociation.org/ omes mixedoutcomes

Campaigns toolkit is launched

NEW resource offering guidance for the Association’s campaigners has been launched. The Campaigning Toolkit is the brainchild of Katy Styles, one of the Association’s many dedicated Campaigns Contacts, who volunteers for East Kent group. Inside, the toolkit offers information about running different campaign events and activities as well as guidelines for arranging meetings with key political decision makers and health organisations. The pack includes ten factsheets, which outline a variety of different

lobbying techniques. These range from information about meeting with members of Parliament, and members of the Welsh or Northern Ireland Assembly, to hosting public meetings and demonstrations, and the effective use of social media by branches, groups and individuals. Each factsheet provides a step-by-step guide and the practical input our national and regional staff can offer throughout the process to ensure our campaigns volunteers are supported in the best possible way. The factsheets are housed in an easy to carry campaigns folder, which also include

an ‘Ask me why I campaign’ pin badge. it The toolkit content and design has been d created, and h input refined, with h P li and dC i from both the Policy Campaigns team and our regional and national campaigns contacts. Copies are available from the Campaigns Team at campaignsmaterials@ mndassociation.org www.mndassociation.org

tribute funds

“We want to help find When Elsie Reade lost her beloved husband James to MND she set up an MND Association Tribute Fund to raise money in his memory. Together with her three children she has raised more than £23,000. This is their story.

T the very heart of Elsie Reade’s family lies a strong desire to help others. For many years, Elsie, her husband James and their children, Hilary, Victoria and Julian selflessly took part in all kinds of fundraising events to support those in need. When Elsie’s friend was diagnosed with breast cancer, Elsie, Hilary and Victoria completed the Pink Ribbon Walk from Lechlade to Gloucester to raise money for Breast Cancer Care. Similarly, when Elsie read about a young girl who had been treated at the Wigan and Leigh Hospice, Elsie thought nothing of taking part in the Manchester to Blackpool Bike Ride, all the time being cheered on by her beloved husband James. So when James was diagnosed with MND and sadly died in 2007, it felt natural for the family to raise money for the Association in his memory. Elsie said: “James and I met at the Belle Vue Dance Hall in Manchester where we had both gone to dance. I was with my friends and he was with his. “He asked me to dance, but I refused twice. He persisted and swept me off my feet. He sent flowers in abundance, I was in love. We married and moved into our new home and we had three beautiful children.” James worked as a maintenance engineer within the paper-making industry

www.mndassociation.org

Elsie, centre, pictured with James, far left and their three children at a family wedding

and was a keen football player. He was also a Queen’s Scout and a scout leader. In 2000, he appeared on the TV show The Generation Game, with the couple’s daughter Hilary and won a place on the famous conveyor belt, taking home all the prizes. Having experienced some falls at home and finding he was struggling to climb the stairs, James went to hospital for tests. In November 2006, he was diagnosed with MND. Elsie said: “Long hospital days while James was having his first tests done were spent playing cards and games, doing crosswords and reading books. Sadly MND robbed him of all these pastimes as he was no longer able to hold a pen or turn the page of a book. His independence was gone.

“I have to be involved for peace of mind, knowing that I am doing my best to alleviate this dreadful disease. We want to help find a cure for MND.” “In February 2007, four days after his birthday, James, my brave, wonderful husband died in hospital. It gives me great comfort that I was with him when

he died, holding him right to the end of his life. “A couple of months later I set up The James Reade Tribute Fund as a focus for our fundraising.” All three of the couple’s children take part in fundraising events which include everything from barn dances, to quiz evenings, bring and buy sales to larger events such as The Three Peaks Challenge. Elsie said: “In 2012, I had a double hip replacement and afterwards I started to think of my own challenges. “Hilary, Victoria and I went to Anglesey and took part in the South Stack Lighthouse Challenge. On another occasion, in Llandudno, we walked up the great Orme and back home we walked up Rivington Pike. Then in 2015 I did the Zip Wire Challenge in Snowdon.” Elsie describes having a Tribute Fund as ‘therapeutic.’ She said: “I have to be involved for peace of mind, knowing that I am doing my best to alleviate this dreadful disease. We want to help find a cure for MND.” If you would like information about setting up a Tribute Fund in memory of someone special, please visit www.mndassociation.org/tributefunds. Alternatively, please call 01604 611864.

a cure” Photo ©Warren Shaffer Studios

James by Elsie Reade That cheeky grin, the knowing wink, How amazing our thoughts were always in sync. We didn’t need words, we knew with a look, We could read each other like an open book. You made me laugh with your ready wit, Always on target, always so quick. The whistle, the work, you were always so willing, All of my dreams you were ever fulfilling. With your talent and skills I was always amazed, Whatever the task you were never fazed. The dining room was our dance space, To bop and jive at a super pace. You loved to surprise me with poems and flowers, I shall store in my heart those wonderful hours. Your sweet talk, your compliments, I loved so much, The warmth of your body, your tender touch. How happy I was that you made me your bride, Our beautiful children, our joy and our pride. Your wonderful smile so warm and true, James my darling, I will always love you.

James and Elsie pictured on their 30th wedding anniversary

Our vision could be your legacy We rely on voluntary donations of which legacies are a vital source, accounting for almost a third of our total income over the last decade. Without legacies, we could not maintain the same high level of investment in research or the breadth and quality of our care and support services.

So we are asking for your help, to ensure we can continue our fight against MND, by leaving a legacy to the MND Association in your Will. It’s straightforward to do and it’s free of inheritance tax. For more information and to request your free Legacy Information Pack, please visit: www.mndassociation.org/legacies. Alternatively, call Stephen May on 01604 611865 or email legacies@mndassociation.org.

Please remember people with MND in your Will.

www.mndassociation.org

Registered Charity No. 294354

If we are to achieve our vision of a world free from MND, whilst also providing the best possible care and support for people affected by this cruel disease, then we must continue to raise the substantial income to meet the costs involved.

volunteering

Are you the next piece in our jigsaw?

Role: Branch Secretary Name: Christine Naylor Responsibilities: “I have been Secretary of the South Yorkshire Branch since 2014. “I support the chair by dealing with the administrative side of branch proceedings and ensure good communication between all members of the branch and the staff at David Niven House. “I help to raise awareness, fundraise and generally champion the Association whenever I can.” Qualities: “You need good organisational skills and to be aware of the need for forward planning. Of equal importance are excellent inter-personal skills, the ability to communicate confidently and being discreet.” What does it mean to you?: “I lost my husband to MND in June 2004. I had attended open meetings of the South Yorkshire Branch with him, but lost contact when he died. I began attending meetings and was eventually co-opted onto the committee and then took on the role of Secretary. It keeps my brain active and I feel as if I am giving something back to the Branch whose members supported us as a family during tough times. “MND is such a wicked illness and raising awareness is important. Everyone has something of value to offer so come along and join us, make new friends and support our efforts to defeat this disease.”

www.mndassociation.org

Role: Campaigns Contact

Role: Social Media Officer

Name: David Setters

Name: Jodie Stephenson

Responsibilities: “I am the Campaigns Contact for the East Surrey Branch. “I was involved with the Don’t let die without a voice campaign and in January 2015 I attended the Parliamentary reception where the All Party Parliamentary Group report was published. “In September 2015, I attended the Labour Party conference in Brighton. “I also helped the Association campaign make amendments to the Welfare Reform and Work Bill.”

Responsibilities: “I am the Social Media Officer for the South Yorkshire branch and run their Facebook and Twitter accounts. “This involves advertising fundraising events and open branch meetings as well as updating everyone on the Association’s features and campaigns.”

Qualities: “We need to understand that public servants are there do exactly that – serve us. Taking some time to make sure you are prepared with the right information is all-important.” What does it mean to you?: “Living with MND can, of course, be bewildering and frightening, but I can think of no other way that I would have been exposed to the uplifting and inspiring humanity which those in the MND community display on a daily basis. By volunteering, you will soon find that you make a difference, even if it’s just in small steps. Every step is pushing us towards better care and the ultimate goal, a cure.”

Qualities: “You need organisational skills as well as a good understanding of social media sites.” What does it mean to you?: “I feel more integrated in the MND community and it’s given me a great opportunity to meet the committee who are an incredibly inspiring group of people. “I am also a scientist at the Sheffield Institute for Translational Neuroscience and my role gives me the chance to bring a bit of science to the MND community. “You don’t need to give up much time – my role takes approximately 60-90 minutes a week – but ultimately it makes a difference.”

Had it not been for the commitment of a handful of volunteers almost 40 years ago the MND Association would not exist at all. Here, we look at the many volunteering roles which are available and how they fit together to support people living with MND. To find out more about how you could become a trustee turn to page 9.

Role: Benefits Navigator Name: Stacey Kerr Responsibilities: “The aim of my role is to assist people living with MND by helping them to complete the necessary forms in order for them to receive their benefits. “It is a practical role which takes away the stress of dealing with the financial aspect and worry that can come with diagnosis.” Qualities: “You have to be a good listener and communicator, caring and dedicated with some knowledge or experience of MND. “You have to be good at recording information and filling in forms as well as being organised.” What does it mean to you?: I lost my Mum to MND and I think that offering my time to help others like her gives me an immense sense of pride and self worth that I can do something in her honour. “The Association is a fantastic charity, doing wonderful work and the personal rewards in helping those with MND and their loved ones are priceless.”

If yo u ar e volu ntee interes ted ring like to fin and w in ou d ema il vo out mo ld lun re mnd asso teering or c all 0 ciation. @ o 345 6044 rg 150

Role: Association Visitor

Role: Publicity Officer

Name: Malcolm Chubbock

Name: Sarah Walker

Responsibilities: “I am currently the Chairman of the Norwich and Waveney Branch of the Association and an Association Visitor (AV). I have been a volunteer for the Association for more than 21 years. “As an AV, I make and maintain contact with people living with MND, their families and carers by phone, email or in person. “We advise on the support available from the branch and the Association as well what should be given by health and social care professional. “We also try to identify problems and challenges and assist in helping with practical solutions.”

Responsibilities: As Publicity Officer for the Cheshire Branch, my role is to promote the work of the branch and raise awareness of the Association in the area. “I draft media releases about a range of branch-related activities, from fundraising events we are organising to the national awareness campaigns we are taking part in. “I have acted as a spokesperson for the Branch during radio interviews and have developed good contacts with the local press which helps to encourage positive coverage.

Qualities: “You need to have good listening skills and be able to work as a team with health and social care professionals. “You have to develop a supportive relationship without being judgemental and maintain a need for confidentiality.” What does it mean to you?: I have gained a greater understanding of the challenges facing families confronted with MND while also appreciating that everyone is an individual and their circumstances and needs are different. “Being an AV is rewarding knowing that whatever you can do is making a positive difference to peoples’ lives.”

Qualities: “Strong writing skills, a good news sense and the ability to interact with a variety of different people are all-important. “Attention to detail and a tenacious approach are also key.” What does it mean to you?: “I gain satisfaction from knowing that I am doing something practical and positive to raise awareness of what MND is and the impact it can have on people’s lives. “Knowing that you are contributing towards a vital support service for people still fighting the condition is very rewarding. “Don’t think that volunteering is just for those with personal experience of MND – you could enhance your CV, meet people and have fun.”

www.mndassociation.org

fundraising “Until we find a cure there will be no finish line”

Team Run MND at The Great North Run

Facebook network is helping runners to share stories and messages of encouragement with other members of the MND family. Run MND currently has 220 members from all over the country who go online, to chat, discuss their plans, motivate and support each other. It was set-up in 2014 by Mike Mesher as a support group for those running the London Marathon. Since then it has grown to become an increasingly popular virtual community. All of the members are training to take part in running events to raise money for the Association. So far they have raised an incredible £224,416. Member Helen Barber said: “It is a supportive group for those united in their fight to raise funds and awareness for MND. “We have members ranging in age from early 20s to 65 and over, ranging in abilities of speed and distance,

but all constant in their support and encouragement of one another. We now regularly get together at various events up and down the country. “We have a motto – it sums up our purpose, our goal, determination and hope, ‘Until we find a cure there will be no finish line.’”

I found out about Run MND via a Facebook post and joined immediately, as I wanted to do something positive with my running and show my support for my Dad.” Emma Broome said all of Run MND’s members had either cared for someone with MND or lost someone close to them. She said: “We run because those with MND can’t. “Running together and supporting each other, wherever we are in the country, strengthens our resolve, lifts our

Footballers give MND the boot

24-HOUR soccerthon raised more than £5,500 for the MND Association. Organised by the Huncote Tuesday Knights in Leicestershire, 50 footballers took to the pitch to play football from 5pm-5pm to raise money for Association. The efforts have been inspired by club member Tony Edwards who is living with MND. Paul Johnson from the Leicestershire and Rutland Branch of the Association is pictured collecting the cheque.

www.mndassociation.org

spirits and increases our determination to keep fighting.” Another member, Michelle Pickard said she joined after her father was diagnosed with MND. She said: “I had started running to lose weight for my wedding, but when Dad was diagnosed, running was a release for me, it helped me to cope. “I found out about Run MND via a Facebook post and joined immediately, as I wanted to do something positive with my running and show my support for my Dad. “I was warmly welcomed to an inspiring, caring, wonderful group of people who understand the devastating impacts on those affected by MND but motivate me to keep running.” To find out more about the group, search for Run MND on Facebook and click ‘ask to join.’ If you would like more information about running on behalf of the MND Association visit www. mndassociation.org/running

Stuart conquers the mighty Amazon

S he made his way down the Amazon River, battling severe sleep deprivation and rowing in temperatures of up to 40°C, the simple rubber MND Association bracelet on Stuart Manley’s wrist was all he needed to keep him going. He said: “At times the row was tough, really tough. But I knew it was nothing compared with what people with MND face every day. I kept looking at the bracelet, which I wore for the whole journey, and it really helped to remind me.” Stuart decided to take part in the row, which started on November 4 and ended on December 3, alongside four friends to raise money for the MND Association after being inspired by his uncle, Bryan Challenor, who is living with disease. It took the amateur rowers 28 days to complete the 2,077 mile row from Iquitos in Peru to Macapa in Brazil – a feat which he hopes could land them in the record books. Stuart, who lives with his family in Shropshire, explained: “The row should take 32 days so the Ocean Rowing Society is applying to the Guinness Book of Records to see if they will recognise our achievement.” During the adventure, the crew navigated around river barges the size of football pitches, encountered extreme weather and survived a close encounter with pirates. He said: “We knew there were a lot of risks but our encounter with some masked pirates was scary. “Because of the heat and humidity we rowed with as few clothes on as possible and when the pirates saw us they soon left us alone. I don’t think they knew what to make of us!” Stuart hopes the row will have raised around £7,000 for the Association is planning to take part in other fundraising events during the year.

Family pulls together to raise £3,330

IFTEEN members of one family came together to take part in a Santa Run at Victoria Park in London just before Christmas. Each member of the family took it in turns to push Paul Paddick, who is 28 and living with MND, around the course. Together, they managed to raise an

incredible £3,330 for the MND Association. Paul’s aunt Lorraine White was one of those who took part. She said: “Paul was diagnosed with MND seven years ago and we wanted to do something to raise money for the Association. We hope to do even more, including a half marathon this year.”

Paul Paddick, centre, pictured with his family who all took part in the Santa Run alongside him

www.mndassociation.org

fundraising

Thank you...

Cheque it out: Thirteen branches of HSBC supported the Colchester and North East Essex Group and adopted it as their Charity of the Year in 2015, raising a total of £10,000. Among the fundraising activities was a very popular quiz night and a sponsored walk on Mersea Island which saw 65 members of staff take part. HSBC manager Steve Hutt is pictured presenting members of the group.

to all those who raise vital funds and awareness to support our work. Share your pictures at www.facebook.com/mndassociation

When the going gets tough: Thomas Vale from Ipswich, got some friends together to take part in the Whole Hog Race which consists of 20 plus obstacles over a five mile course. The team was inspired to take part by Thomas’ mum Patricia. Pictured, from left to right, are Lewis BrownSawyer, Lee Grimwood, Thomas Vale, Rob Calver, Lee Battley and Luke Richardson. The event raised a fantastic £3,000.

Carried away: Shirley Dando who works for M&S in Bath celebrated her 70th birthday and asked colleagues to make donations to the MND Association in lieu of birthday presents. Colleague, Laura Penney organised bag pack collection days at the store which not only raised £1,030 but a massive amount of awareness for the disease and the Association’s work. Pictured from left to right are Frances Wimpress, Laura Penney, Karen Wilkins, Shirley Dando, Hannah Meeking and Wendy Peplar.

With a little help from my friends: Irene Jones, who is living with MND, organised a coffee morning and Silence Speaks event at her care home in Kidderminster. Irene is pictured centre with, her friends, Lee Williams, Maureen Howlett, Sarah Brehony and Dee Gough, who dressed as famous mime artist Marcel Marceau. It was a very successful event which raised over £2,000.

www.mndassociation.org

Pulling together: Jill Rowland and her friend, Christina Collins, from West Sussex made quilts, bags, buttons and cards to raise money for the MND Association. They became inspired to raise funds by their friend’s husband John, who sadly died shortly after the event. John’s son and daughter-in-law supported the sale and bought a quilt for John’s wife. Jill and Christina, who raised over £1,500 are hoping to take part in another event soon.

Silence Speaks: Andrew Sleeman and sister Karen Lang held a silent bucket collection at their local Tesco branch in Launcester to promote Silence Speaks and raise vital funds and awareness.

Bazaar in Qatar: Ten-year-old Aoife Glasswell, from Stamford, Lincs, who is currently living in Qatar, made crafts to sell at her school Christmas Fair. Aoife spent hours making all these beautiful items and was thrilled to have raised a fantastic £250.

Music to their ears: Music in the Park was held in Crantock Village in Cornwall on 4 August 2015. Ian Inskip, who is living with MND, was joined by his daughter Katherine, wife Marianne, son-in-law Jeremy and grandchildren Matthew and Daniel who helped to run a stall to raise money for the Cornwall Branch. Ian was the navigator on board the HMS Glamorgan during the Falklands War in 1982 and during the day they sold homemade buns, plants, copies of Ian’s book, Ordeal by Exocet and embroidered cards. They raised £48.48.

WHY SIT IN THE BACK?

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fundraising Pedal power raises pounds

Diane Trollope, right and Michelle Brennan pictured at the 5K Major Series Max and Barrie Burgess are pictured at the finish line

ATHER and son Max and Barrie Burgess cycled 50 miles around Norwich on behalf of the MND Association. Max’s mum, Ann is living with MND and inspired them both to take part in the ride which was held in September. Max said: “I cycled to support the amazing work that the Association does. It’s hard for Mum and for us as a family because every day she gets a little bit worse and there is nothing anyone can do about it.” Max raised £232 on his JustGiving page and has already presented a cheque for £494 raised offline to the Norwich and Waveney Branch of the Association.

Remembering those whom we have lost

Cherry Tree was planted at Ryton Pools Country Park in Warwickshire in October in memory of those who have died from MND. The moving event, pictured right, was organised by the Coventry and Warwickshire Group of the Association and was attended by a large number of families.

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Where there’s mud there’s money!

HERE was plenty of mud and plenty of laughs when Diane Trollope and Michelle Brennan took part in the 5K Major Series at Eridge Park in East Sussex in October. The friends were inspired to take part in memory of former triathlete, Paul Eldred, who died from MND last year leaving his wife, Lynne and two young sons. Lynne said: “These amazing ladies both have boys in the same class as my son

and were both very helpful during Paul’s struggle with MND. “I like to think that Paul was an inspiration to them as they only started running in January last year. “They were challenged by friends to enter this event and I was very grateful and proud when they asked if they could run in memory of Paul and for the Association.” Diane and Michelle raised £905.

obituaries Mark Stone

SSOCIATION Trustee, Mark Stone sadly lost his fight with MND in February aged 55. Over the years, Mark had worked in health and social care in a number of roles including training, testing, business analysis and project management. He worked across the sector, for software development companies, for those managing change and directly for the public sector in the NHS and local authorities. After being diagnosed with MND in 2012, he continued his work on behalf of the NHS and campaigned on behalf of those with disabilities. Later the same year, he became an MND Association trustee and was a highly valued member of the Care Committee. The Association’s chief executive, Sally Light said: “We have benefited enormously from Mark’s commitment, energy and wisdom. His passing will leave a very hard to fill gap around the Board table and at his local Oxfordshire Branch.” Lesley Ogden from the Oxfordshire Branch said: “I used to tell him he was the face and voice of MND in Oxfordshire. He certainly did a lot to raise the profile of MND locally as well as nationally. “We will miss him hugely but remember all he contributed and are glad

Mark pictured at the Association’s AGM in September

to have known him so well.” Mark was a regular contributor on BBC Radio Oxford and in October 2015 was interviewed by Jeremy Vine for his Radio 2 show. He eloquently described the progression of his MND and the impact

on both himself and his family and friends. In a poem taken from his blog, he listed the things he could no longer do as a result of the disease. The thoughts of the Association and the whole MND family are with Mark’s family and friends.

Jean Brown

EAN Brown, who had been a member of the Durham Group of the Association for many years sadly died in December aged 75. Jean became involved with the Association when her husband George was diagnosed with MND and continued her work after he died. Every year Jean had a new idea on how she could bring people together, support those affected and raise awareness of MND and the work of the Association. She would also try and find a new twist on the annual Walk to D’Feet event, which one year involved the tower of Durham Cathedral and a troupe of Morris Dancers in the centre of Durham on another. Our thoughts are with Jean’s family at this difficult time.

Jean pictured at an event to raise money for the Association

www.mndassociation.org

your voice 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 Voice, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email at editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.

Frank’s memories of a visit to Buckingham Palace We went to tea at Buckingham Palace, The Farmer’s Boy with Isabel and Alice. I carried my Thumb Print for all to see, To raise awareness of MND. My family and friends made me feel proud As, we mingled with other guests in the crowd. I had to look my very best As on table 12 we were seated with the rest. I felt as though I wore a crown! Many stars said “Are you well?” “Yes” I replied – but I ached like Hell! The sun blazed down, that day in June But the day was over much too soon. We must remember why we were there To “Honour Our Heroes” who couldn’t share, But we bless them all as we see My thanks to you all with MND. Frank Bushnell Frank Bushnell and fellow residents from his care home prepare for a trip to Buckingham Palace

diary dates 17 April: Brighton Marathon 24 April: London Marathon May-September: Fruit Shoot Mini Mudder 2 May: Belfast Marathon 18-22 May: London to Paris Cycle Challenge 22 May: Great Manchester Run 10K June: Awareness Month and Silence Speaks 4-5 June: Nightrider Cycle Challenge – London 2 July: MND Association Regional conference – Crewe

www.mndassociation.org

Talking Twitter How Twitter is keeping our MND family connected – follow us @mndassoc

Rae Martin Smith @Rae_MS – 16 February Happy to welcome @Hwallace32 as newest @mndcampaigns #CampaignsContact & looking forward to visiting @MNDCornwall together this Thursday #MND Harry Wallace @Hwallace32 – 16 February Thanks Rae. I’m excited to get involved and meet people from @MNDCornwall on Thursday. Rae Martin Smith @Rae_MS – 16 February @Hwallace32 @mndcampaigns @MNDCornwall You’re welcome. Can’t wait to talk ‘Champion the #MND Charter on your doorstep’ w/ you & others Thursday. Tracy Thomas @lara63655239 – 16 February @Rae_MS @Hwallace32 @mndcampaigns @MNDCornwall great to welcome Harry to the Cornwall MND family. Shout if I can help at all.

In her own words Beatrice Parvin was inspired to write this poem after losing her mum to MND 13 years ago while she was expecting her first child. She said: “After her death I wanted to move away as far as possible from MND, but wrote this poem about three My mother came in to wish me Good morning As she wanted to know if I liked my room In the new house. It wasn’t really my room – I’d left home years before But she liked to think That I still had a room.

years ago. I wanted to express the nature of the disease through prose as I am mostly a fiction writer, but felt these split, abrupt sentences better expressed the progression of the illness and its sudden unexpected twists.” “Typical actress, what a drama Queen,” we teased. The new house was more Practical than the old. All those staircases Became impossible.

She’d chosen turquoise paint, A bold chintz for the curtains Where parrots and butterflies flew. Four Chinese ladies were on the wall, Old favourites.

From her chair she redesigned The entire ground floor so that a Wheelchair could glide unheeded. The electrician, plasterer and carpenter Were all very kind And worked round the clock To finish it in time.

It was nice to see her, standing. She smiled to see me there Then stumbled and began to Lose her balance.

My mother had a good voice For speaking. I first noticed a slight slur and Rounding of the vowels on the phone.

I leapt out of bed and caught her, We fell down, her whole weight on mine. I was nervous for the child I carried And so was she.

It was like this for some time. The woman who did her feet said, “I always thought you were posh Mrs Lane But now you sound really posh.”

We narrowly missed the stairs But she hit the banister Her head was bleeding. Together with my brother We helped carry her to her chair. “I was always good at falls,” she joked.

Then it disappeared altogether Like the car radio Inside a tunnel. Beatrice Parvin, via email

‘Thank you for all your help and support’ This lovely message was recently received by our branch from the daughter of a lady who had died from MND and I wanted to share it in Thumb Print. I’ve been wanting to get around to writing to you, and finally, I have! I just wanted to say thank you for all the support, practical, emotional and financial, that you and the Association brought to Mum and all of us. As you well know, it’s such a hard time, regardless of whether it was expected or not. Things moved so fast in Mum’s final few weeks, and I know that we should be grateful for it not being prolonged to agonies, but obviously it is still very hard. Your support and care has been so appreciated over the last two

years or so, I don’t know what Mum and Dad would have done without it. I just wanted to say thank you, because while I was in Jersey, I wasn’t capable of saying these things, and now that I have had time to process a little and am calmer, I didn’t want to leave it unsaid. Your work is so essential and for us it has been a godsend. I know Mum was blown away by your generosity, attention and care.

about us: The Motor Neurone Disease (MND) Association 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.

Website www.mndassociation.org

Social media 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 directing to other services and agencies. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 8026262

mndconnect@mndassociation.org

Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org

get involved: telephone: 01604 250505 website: www.mndassociation.org

Janine Borny Hon. Secretary, Jersey Branch

email: enquiries@mndassociation.org

www.mndassociation.org

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Thumb Print - Spring 2016