Thumb Print - Spring 2018 by MND Association

The magazine of the Motor Neurone Disease Association

Spring 2018

Our friend and patron Prof Stephen Hawking: 1942-2018

For mND

GAZE COMPATIBLE

www.mndassociation.org

, part of the

family

6-7

‘I have MND but my life is not over’ Andrew Knowlman talks to Thumb Print about his life with MND

8-9

‘He was our icon, our shining star’ The MND Association remembers our patron, Prof Stephen Hawking

12-13

Your stories Members of the MND family share their stories

16-17

At the heart of our research Learn more about the Association’s healthcare research projects

20-21

‘Becoming a trustee gave me purpose’ Jan Warren explains how being an MND Association trustee has changed her life

22-23

Coming to a town near you! Looking ahead to our regional conferences and AGM

34-35

Thank you! Turning the spotlight on our fundraisers

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

welcome… In the five years since I took over as chief executive of the MND Association there have been many moments which will stay with me forever. I will never forget those few days in the summer of 2014 when £7.2 million was raised for the Association through the Ice Bucket Challenge. Seeing that total rise – seemingly by the minute – and realising just how much of a difference the money would make to our work, and to all those who are affected by MND, was nothing short of breath-taking. I will also never cease to be amazed by the sea of faces I see each year at the International Research Symposium and the sheer dedication and brilliance of the scientists who attend from around the world – all of them united in the name of MND research. It is a tremendous privilege to be able to witness the incredible work which is being done by researchers around the world and it continues to give me great hope that, one day, we will achieve our vision of a world free from MND. But by far the biggest honour I have had over the past five years has been meeting members of our MND family whose lives have in some way been touched by this devastating disease. I have met people living with MND, volunteers who dedicate their lives to supporting those affected, passionate campaigners committed to bringing about change and fundraisers who bake cakes, run, walk or jump out of aeroplanes to raise money to support our work. I was also very proud to have met our patron, Prof Stephen Hawking who we lost to MND in March and I know he will be sadly missed by the whole MND family. While his story is in many ways unique, not least because he lived so long with MND, by helping the Association to raise awareness, he was able to demonstrate how MND can affect anyone regardless of their background or status. His story – and that of every person living with MND, every volunteer, campaigner, researcher and fundraiser – inspires me in my work every day and makes us all more determined to do everything we can to support people living with MND and all those who care for them.

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

Sally Light Chief Executive

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Rugby side tackles MND Claire and Margaret pictured taking part in Tea4MND

Prime Minister recognises Claire and Margaret

RIENDS Claire Pedrick and Margaret Gray have been recognised by the Prime Minister after raising more than £50,000 for the MND Association. Inspired by Margaret’s husband John, who is living with MND and their mutual friend Peter Jackson, who were both diagnosed with MND in 2016, the pair decided to hold a Walk to d’feet MND every month for a year in Letchworth, attracting more than 300 participants. Their hard work attracted the attention of Prime Minister, Theresa May and their local MP, Oliver Heald presented them with their awards in January. Claire and Margaret said: “We have been overwhelmed by the support received this year around a disease that brutally takes life with no treatment or cure. “The walks have been life-giving to us all and our achievement has come from hundreds of people – miles walked, cakes baked, tea served and money given. It’s been so much more than a few walks. It’s a community. We’re not stopping!” The Association’s director of external affairs Chris James said: “We rely on volunteers to raise awareness for what is a relatively uncommon disease and also to raise funds for global research. “The event started nearly a year ago with just ten people on a walk, has become a hugely successful fundraising effort and it’s all down to their incredible drive and passion to make a difference to people living with MND.” To celebrate their success, an annual Walk to d’feet will be held, the first of which will be held on 14 April. To register your Walk to d’feet MND visit www.mndassociation.org/walk-to-dfeet

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LD Reigatians Rugby Football Club is taking on its toughest opponent yet for the 2017/18 season – MND. Club chairman, David Forsyth said the team had been inspired by friends of the club who are living with MND and have pledged to raise awareness and vital funds for the MND Association during the season.

“I’m close to many people at the club, so it is immensely heartwarming to see this fantastic effort take shape.” So far, more than £12,000 has been raised and events coming up include a golf day on 5 June and a summer ball on 7 July. The club has also produced

a second team kit featuring the MND Association’s logo. David said: “Rugby Union has been hit hard by MND in recent years. The Scottish International, Doddie Weir was diagnosed in 2017 and The World Cup winning Springbok scrum-half, Joost van der Westhuizen sadly died in February. A South Africa shirt signed by him raised over £3,000 for the cause at a recent dinner. The club is being supported by David Setters, himself an Old Reigatian, who is also living with MND. David said: “I’m relatively fortunate to have a slowly progressing version of the disease. I’m close to many people at the club, so it is immensely heartwarming to see this fantastic effort take shape.”

Players from Old Reigatians take to the pitch in their kit featuring the MND Association logo

Are you receiving ESA? Contact us now for guidance and support

NYONE in receipt of Employment Support Allowance (ESA) prior to 29 September 2017 is being urged to make contact with the MND Association to ensure we can provide guidance and support amid on-going concerns over the reassessment process. The move follows a meeting with Minister for Disabled People, Health and Work, Sarah Newton MP in February where the Association called for the end of reassessments for those claiming ESA. A new severe conditions exemption for all new higher-rate claimants of ESA was introduced last year, following a hugely successful campaign.

“While we will continue to work with the Minister, we want all those members of the MND Association, who believe they are in the group due to have a final reassessment, to come forward.” However, as things stand, those already claiming ESA will not be automatically exempt and will need to undergo one final paper-based reassessment to receive exempt status – something we believe is absolutely wrong. The Association’s Chief Executive Sally Light said: “We want to stop people living with MND having to go through inappropriate and unnecessary reassessments in order to receive this benefit. “This situation is unacceptable and causes unnecessary anxiety and stress for those concerned. “While we will continue to work with the Minister, we want all those members of the MND Association, who believe they are in the group due to have a final reassessment, to come forward so we can make sure they are properly supported and informed of any developments.” During the meeting with Sarah Newton MP, the Association was given the opportunity to explain why the reassessment process is so difficult for people with MND, their carers and families, and presented her with an open letter calling for an end to benefit

MND Association trustee, Emma Adams, is pictured with members of the Campaigns Team at Westminster.

reassessments for people with MND, signed by 8,000 supporters. In her response to the letter, the Minister committed to investigating the issues raised by the Association and we will continue to work with the Department to seek further progress on this issue. The matter is due to be discussed at a meeting with a number of other organisations at the Department this month and we will continue to work with stakeholders to raise awareness of the impact of inappropriate and unnecessary reassessment processes on people living with MND, their carers and families.

In the meantime, if you are sent an ESA50 form for reassessment, you can contact our Benefits Advice Service on 0808 801 0620 (England and Wales) or 0808 802 0020 (Northern Ireland) for help completing the form. If you or a member of your family was in receipt of ESA prior to 29 September 2017 please contact MND Connect on 0808 802 6262 or email us at: mndconnect@mndassociation.org where the team can take your details and we can put you on a contact list for further information.

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I have MND but my life is not over

or Andrew Knowlman, finding a way to cope with MND has become a way of life since he was suddenly diagnosed with the disease in 2015 at the age of 47. Since then, like many others, Andrew and his wife Jane, have tried to keep life as normal as possible for their children Sebastian and Valentina, while also battling for the support they need to make life more comfortable. Most recently, that has meant publicly taking on the Department for Work and Pensions (DWP) to retain the right to keep a minivan which had been the only way Andrew could get out and about. Access to the minivan had been put under threat after national charity Motability had said they had not been receiving the mobility part of his Personal Independence Payment (PIP) benefit since August 2016. But thanks to Andrew and Jane’s determination, the tireless support of his friends and the 40,000 people who signed an online petition, that decision has now been reversed.

“I am going to live as long as possible, I want the best for my wife and children and will do whatever is necessary.” He said: “I was shocked to hear that I was about to lose my van, so met with friends to agree how to keep it. “If you have a good and understandable case then people get behind it. I always believed I would keep it and was pleased that I can. It means I can still get out. The Motability vehicle is the only way I can attend events at my children’s school, be away from the care home and be in nature. “It is the only way to watch my children ride their bikes, play golf and music, watch Watford FC and travel easily to hospital appointments. Although I have a terminal illness, in no way do I see my life as being over. I am a dad to my children and I need the Motability vehicle to enable me to be just that.” Andrew was diagnosed with MND in April 2015 after experiencing symptoms the previous summer. He said: “I cried and cried. Life had already changed because my dear children could see something was wrong. “My running was slower. I once put my leg down to balance on my bike and fell. I was tripped up by our dog

in June and it was hard to get up. I could do less and less with the children. By the autumn, I couldn’t lift my left foot properly. “It’s common knowledge that average life expectancy with MND is two to three years, so, of course, that can play on your mind. I told myself, ‘everyone is different,’ but it has been difficult to steadily lose the ability to walk, stand, do anything with my hands and arms, speak, eat and drink. “My progression is noticeable by the week. Sometimes steady, sometimes faster. I cry every day.” Despite his difficult circumstances, Andrew has been determined to remain as positive as possible and has started writing children’s books, using his experiences of travelling and working abroad as inspiration for his stories. He explained: “I always enjoyed learning languages and was curious about the world. At university, I spent a year in Germany. “Between 1996 and 2010, I worked and lived in Istanbul, Milan, Madrid, Sydney and Nice and, along the way, I learnt German, Turkish, French, Italian and Spanish. “Before MND, I was an active dad, and I loved it. “I worked a lot, so there was no space for the writing to emerge. The stories are based on my experiences travelling in the countries where they are set – I wrote The Little Bakery for my daughter and The Fantastic Race for my son. “I felt I was doing something the kids could be proud of, not only the books themselves but the circumstances in which I’ve written them. People say you’re still the dad, but in many practical ways I can give my children a lot less. In story-writing, I found a new skill. “I am impressed with how the children carry on, but there is a lot of sadness. Jane holds the family together in very trying circumstances. She is incredible. The fact the illness is relentless makes it very difficult.” Despite everything that MND has thrown at Andrew and his family over the past three years, he remains as determined as ever to fight on. He said: “Unfortunately you have to be very determined and organised to get what should come easily. “I am going to live as long as possible, I want the best for my wife and children and will do whatever is necessary.”

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He was our icon,

Prof Stephen Hawking pictured with fellow MND Association patron actor Benedict Cumberbatch

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, our shining star T

ributes have been pouring in from across the MND community for Prof Stephen Hawking who died from MND in March aged 76. Prof Hawking was diagnosed with MND at the age of 21 and lived for 55 years with the disease, defying all expectations. He had been heavily involved with the Association since it was first set-up in 1979, becoming a patron in 2008. Over the years, he raised awareness of the disease around the world, perhaps most memorably through the success of the Oscar-winning film The Theory of Everything which told the story of his life and relationship with his first wife, Jane Wilde.

Sarah Ezekiel, who is living with MND, pictured with Prof Hawking at the premiere of The Theory of Everything

Chief executive Sally Light said: “All of us at the MND Association have been extremely saddened by Prof Hawking’s passing. “I was fortunate to meet Prof Hawking on several occasions and I share the sadness of the whole MND community. We have been so grateful for his support over many years. He did a huge amount to raise awareness of MND, yet he never allowed himself to be defined by his illness. His approach to life with MND is an example to us all. “We were involved from the very start with the production of the film The Theory of Everything and it was an incredibly powerful tool for further raising awareness of MND. “We were honoured that Prof Hawking was a patron of the Association and we are inspired by his tenacity to keep pushing boundaries. “We will continue to do all we can to support people living with MND in England, Wales and Northern Ireland.” Martin Anderson, a founder member of the Association who still volunteers on

our behalf today, said: “On 6 October 1979, a small group of people from Yorkshire and London came to Nottingham and formed the National Executive Committee. Later we adopted a constitution, taken and amended from the local garden society and we then applied to become a registered charity. “As such a young charity, Prof Hawking did help put us on the map and as his fame grew his name was able to open doors for us among celebrity supporters too.” Members of the MND family were also keen to pay tribute to Prof Hawking and praised his work in raising awareness of the issues faced by people living with MND. Sioned Roberts Jones, who is living with MND, said: “Rest in peace Stephen Hawking – you gave me hope when I was diagnosed 11 years ago.” Campaigner Greg Broadhurst, who lost his grandfather to MND said: “I’ve long admired Stephen Hawking, both as a volunteer for the MND Association and as a total space nerd! His desire to know what is out there had me really interested in space, but the example he set living with MND was admirable. “As a campaigner myself, he always pushed issues, helping us to make our voice heard with the public and he had my total respect for his desire to get involved. He will be sadly missed.” Sarah Ezekiel, who is also living with MND, said: “I met Stephen Hawking at The Theory of Everything film premiere but he couldn’t use his computer. I was so disappointed, I think he was tired because it was after the film. I kept asking him questions which probably really annoyed him! “When I was diagnosed and found out that he had MND I was terrified! But later on, I admired how he didn’t let MND define him and got on with his work. Also, everyone with MND was hopeful because of his longevity.” Lee Millard, who is living with MND, said: “The MND Association provides vital support for people with MND. Stephen Hawking was our icon, our shining star.” Do you have any memories of Stephen Hawking you would like to share? Please email clare.brennan@mndassociation.org Remembering Roger Bannister – Page 31

He did a huge amount to raise awareness of MND, yet he never allowed himself to be defined by his illness. His approach to life with MND is an example to us all As such a young charity, Prof Hawking did help put us on the map and as his fame grew his name was able to open doors for us among celebrity supporters too His desire to know what is out there had me really interested in space, but the example he set living with MND was admirable When I was diagnosed and found out that he had MND I was terrified! But later on, I admired how he didn’t let MND define him and got on with his work The MND Association provides vital support for people with MND. Stephen Hawking was our icon, our shining star We were honoured that Prof Hawking was a patron of the Association and we were inspired by his tenacity to keep pushing boundaries www.mndassociation.org

Understanding the origins of

MND In the latest of our interviews with the Association’s PhD researchers, Thumb Print meets Matthew Nolan, who is based at John Radcliffe Hospital in Oxford, where he is looking at the ways MND affects the brain and spinal cord under the supervision of Dr Olaf Ansorge.

Matthew Nolan

“M

Y project is based around two distinct but biologically related concepts – selective vulnerability and somatic mosaicism. “‘Selective vulnerability’ is the term used to describe the susceptibility of particular cells to different disease-causing processes. In particular, I am looking at whether certain subgroups of neurons within an area of the brain called the primary motor cortex, which is responsible for the execution of movements, are more vulnerable than others, and whether they are more likely to accumulate aggregations of TDP-43, a key protein in MND pathophysiology. “The question is, ‘Why are some cells more susceptible than others?’ “The other concept my research focuses on, ‘somatic mosaicism’, relates to the slight genetic variations in the cells of our body. “During cell division (mitosis), the resulting cells sometimes develop tiny alterations in their DNA. The majority of neurons in the adult human brain are ‘post-

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mitotic’, which means they are no longer capable of dividing. However, during the development of our nervous system, when neural precursor cells are actively dividing, cells develop these tiny alterations and it is likely that every cell in the human body contains a slightly different genetic makeup because of this. We are investigating whether these tiny alterations in the brain contribute to the development of MND, and whether their presence is associated with cells that are selectively vulnerable to the disease. “My first connection to MND research was during my master’s degree, where I used zebrafish to investigate a rare type of MND called LCCS1. During my PhD, I have investigated which proteins are most likely to accumulate within the primary motor cortex in the different genetic forms of MND and whether the disease affects certain types of neurons more than others. “I am now in the final stages of my studentship, currently writing up the

findings of my research for submission to an academic journal. “I also had the chance to present my work in the form of a scientific poster at the International Symposium on ALS/MND in Dublin and in Boston last year – both invaluable opportunities to hear about the latest research in the field and discuss my work with others.

“My first connection to MND research was during my master’s degree, where I used zebrafish to investigate a rare type of MND called LCCS1.” “After my PhD, I’m aiming to continue working in the field as a post-doctoral researcher in the hope that I might contribute to our understanding of MND in the future. I am extremely grateful to both the MND Association for funding my PhD, and to the patients who kindly donate the tissue which is essential to our research.”

Being a trustee has been a rewarding experience

“B

eing elected as Chair of our fantastic charity was not only a huge surprise, it was also an immense privilege for me. I just wanted to be involved somehow 17 years ago, mainly because the Association had been such a help when my partner was diagnosed and living with MND. Whenever I rang up, the Association proved to be a reliable and constant source of guidance and reassurance as our lives became ever more complicated and confusing. “I never intended to do more than be a local fundraiser and attend meetings, but like many of my colleagues on the Board, eventually becoming a trustee allowed me to draw on this devastating personal experience, turning feelings of helplessness into feelings of hope for a future free from MND. “It has been such a rewarding experience and one which I would recommend to all our members – whether you are someone who is living with MND, a carer, volunteer, campaigner or fundraiser. “If you are thinking about becoming a trustee, now is the time to put your name forward and you will find details of how you can get involved within this edition of Thumb Print. You will also find important information about the election process.

“Whoever you are, whatever your background, whatever your skills or your age, we welcome nominations from all members of the MND family – all that matters is you have some time to spare and a genuine desire to help. “At the Association, people living with MND are at the heart of everything we do and it is important that this continues to be reflected within our Board. “So, with that in mind, we are actively encouraging people living with MND to put themselves forward for this important role. We are committed to making sure that any candidates with MND have all the support they need to be a trustee – whether this is help with travel to attend meetings, access to video-conferencing or practical help at the meetings. “If you thinking about becoming a trustee, I would urge you to read Jan Warren’s moving account of how she cared for her husband David, who she sadly lost to MND. This experience became Jan’s motivation for wanting to become a trustee. “I look forward to seeing you at the regional conferences over the coming months.” Alun Owen, Chair, Board of Trustees

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yourstories

Stars shine only in the darkness In May 2012, Anne Springer’s world was turned upside down when her husband, Marc, was diagnosed with MND. Anne and Marc had no idea what MND was and were unprepared at how it would go on to affect their lives. In this open letter, she thanks all those who offered love and support during dark times as well as a message of hope to those who have just been diagnosed.

“T

O anyone recently diagnosed with MND. “You and your family will be going through a multitude of different emotions and have hundreds of questions. That’s what it was like for our family when my husband Marc, an amazing runner, was diagnosed in May 2012. “We didn’t know anything about MND and initially felt helpless, confused and frightened about the future.

“We decided to accept we didn’t know what was to come and that we would deal with any changes as they arose and in the meantime just get on with enjoying life.” “I asked the registrar who broke the news to tell us about it and he directed us to the MND Association website. That did give us some useful information, but didn’t really allay any of our initial fears. “It wasn’t until Marc was allocated a specialist nurse called Linda, that the ‘stars’

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started to appear one by one and the darkness we were feeling started to fade. “Linda came to our home and became our first contact with an amazing team which supported Marc and all our family in many different ways. “It took us a long time to realise everyone’s experience of MND is different and there are no simple answers as to how it will affect each individual. “We decided to accept we didn’t know what was to come and that we would deal with any changes as they arose and in the meantime just get on with enjoying life. “The stars who helped us every step of the way were numerous and included a specialist MND nurse team, carers, mobility team, MND volunteers, tech team, nutritionists, sleep service, our priest, district nurses, hospice staff and many, many more. Marc took advantage of everyone’s help and every gadget available to him, but he especially loved his tablet which enabled him to keep in contact when he could no longer use his phone. “He also used it to help him write a

Marc, who was ‘an amazing runner’

final book for our grandchildren. He had already written There is a Spider and There is a Mouse, but his final book, There is a Worm, completed just before he died, has been snapped up by family and friends in return for a donation to MND research. “Family and friends also raised funds joining in The Ice Bucket Challenge, cycling from Leeds to Edinburgh, doing skydives and running. “Thanks to the support of our doctor, a nurse from our local hospice and our amazing district nurse team, Marc died at home on 28 July 2017. A collection was taken at his funeral and a Just Giving page increased this contribution. “A lot of help is available and a great deal of research is being done to find a cure, so don’t feel alone. “I’m sure you will all find stars of your own.” Do you have any stories or advice you could offer other readers of Thumb Print? Please get in touch by emailing clare.brennan@mndassociation.org.

yourstories

Hospice care is positive and enlightening Stephen Bluff, who is living with MND, wrote to Thumb Print to share his experiences of hospice care with our readers.

“I

have motor neurone disease, just one of many varying medical conditions facing the hospice staff on a daily basis. “The hospice staff not only manage a wide range of individual medical conditions but also collectively implement specialist care, complementary therapies, counselling, bereavement services and medication. “I really never thought I would go to a hospice. I have always wrongly assumed, as many of us do, that the words ‘hospice’ and ‘palliative care’ relate to a place where people go for end of life care. “I now realise this assumption is only partly correct and, in reality, it is only a small part of the complex care infrastructure. “Over many months, as a day care patient, my experience has been nothing but positive. I will try to explain my feelings, emotions and observations during my weekly day care within this hospice environment. “NHS Staff, assisted by experienced volunteers, arrange daily activities to

stimulate the patients emotionally, physically and mentally. “Activities include craft sessions, such as painting, basketry, model-making and pyrography, all mentally-stimulating and generally physically beneficial. “I’m physically unable to do most activities due to immobility, but support and assistance is always available from staff and volunteers. “I have personally been cheered up by observing, listening, discussion and conversation. The majority of hospice staff go above and beyond their expected job requirements. “On November 10 last year, we experienced a Remembrance celebration and service. “Displays were set up in the day centre which stimulated memories and thoughts, there was also an outside display of cascading poppies simulating a waterfall. “The display was constructed by hospice staff, who had also painstakingly hand-made the poppies from plastic drink bottles then painted them. I must

say I felt humbled by the efforts of the staff who went that extra mile to make Remembrance Day extra special for us all. “I was very emotionally affected with thoughts of my late father and his friends who sacrificed their youth for freedom. This type of event is not a one-off, the nursing staff continually strive to make hospice routine memorable, colourful and inclusive.

“I have always wrongly assumed, as many of us do, that the words ‘hospice’ and ‘palliative care’ relate to a place where people go for end of life care.” “I have found attending Hayward House a positive, enlightening environment far exceeding my expectations. “I have genuine respect for the dedication of all Hayward House staff, their hard work, which is overflowing with compassion. I’m certain the hospice services are appreciated by patients and their loved ones.” Do you have experience of hospice care? Send your thoughts to clare.brennan@mndassociation.org

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Are you a Super Seller? Sell all of your tickets to be entered into an additional £250 cash prize draw! Closing date: 3 July 2018 Draw date: 10 July 2018

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To find a cure together In the latest of our series of interviews talks to Pietro Fratta

”U £5,000 in cash prizes

ITH more than £5,000 in cash prizes there has never been a better time to take part in the MND Association’s Spring Raffle and show your support to people living with MND at the same time. Last year, our Summer and Christmas raffles raised a combined total of almost £172,000 to support people living with MND and fund vital research. You could help make this year’s raffle our biggest ever by buying or selling tickets today. Each ticket costs just £1 and the more we sell the bigger the difference we can make. For the first time, those who sell all of their tickets will be entered into a prize draw to win a bonus £250 cash prize. To be in with your chance to win, return the reply slip along with your ticket stubs and payment in the Freepost envelope provided with this edition of Thumb Print. Alternatively, you can enter online at www.raffleentry.org.uk/mnda. For extra tickets email raffle@mndassociation. org or call our raffle hotline on 0345 601 6936. Raffle entry closes on Tuesday 3 July, and the winner will be drawn on Tuesday 10 July. Regulations mean that entry is open to all UK residents excluding those in Northern Ireland, Guernsey and the Island of Man. Thank you to all those who entered last year’s Christmas Raffle and congratulations to our winners.

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NDERSTANDING MND and finding a cure is not something that will emerge from one single project – it will require collaborative work from MND researchers throughout the world. We’re up for it.” That’s the view of Dr Pietro Fratta, a Clinician Scientist at the UCL Institute of Neurology who is currently involved in major research funded by the MND Association which aims to discover more about the causes of MND. He explained: “Through the NECTAR study we are looking at the genes of patients participating in the large national MND Association biomarker study, AMBROSIA. “We are basically looking at the ‘spelling mistakes’ in DNA that can cause or modify the course of MND.

“There is much more to do and we will not stop until we start delivering trials and have an impact on this disease.” “The AMBROSIA study is essential because we desperately need effective biomarkers to improve diagnosis and to predict and monitor how the disease progresses – these are two key features for running good clinical trials and we really do need good trials to identify drugs that work in MND. “AMBROSIA will collect many different types of samples including blood, urine and fluid from the spinal cord from 1,000 MND patients. NECTAR will provide key genetic information about all these samples and, combined with detailed clinical information, this will be a transformative resource for the whole MND community.” Pietro said he had always been fascinated about finding out more about how the brain works which led to him deciding to study medicine.

He said: “During medical training there was lots of running around, needles, decision-making paperwork and very, very long hours. It was wonderful, exciting, but still the research interest prevailed and I moved to choosing neurology. “I will always remember my first MND patient as a fifth year student. What struck me was how thin the person’s past medical history was, basically, just good health. The neurological examination was so clear and pointed to the pure involvement of the upper and lower motor neurons. Everything was so well-defined, clear cut, but at the same time incurable. That stayed with me.” Pietro has also been heavily involved in research into Kennedy’s disease, a rare genetic condition with symptoms similar to MND, and set up the national Kennedy’s disease clinic at The National Hospital in London in 2015. He explained: “My interest in Kennedy’s started with a corridor meeting with Prof Michael Hanna, while I was starting my PhD. Mike had set up a registry five years before, but there was no fellow to follow it up at the time. “I was working on MND, I had always been fascinated by repeat expansion disorders, and he asked me to take that on. I thought it would be a brief side project. “We started with a basic assessment of people on the registry and what struck me were the responses to the open questions in our survey – patients clearly felt left alone, many were not aware of any other people living with the disease and many had not been seen by a neurologist. That’s when I decided to set up a clinic. “We are now seeing more than 50 patients, are carrying out imaging and biomarker studies and in 2016 we held the first UK Kennedy’s disease day, which was probably the largest meeting of people living with Kennedy’s in the world. “It has been quite a journey and the

we need to work – we’re up for it with key MND researchers, Thumb Print about his work and his hopes for the future support from patients and their families has been fantastic. There is much more to do and we will not stop until we start delivering trials and have an impact on this disease.” Pietro also said he was optimistic about the future of MND research and the huge progress that had already been made, particularly in the past ten years. He said: “A lot of the work in our lab aims at understanding how the protein TDP-43 is failing in MND and how this leads to the disease. “This TDP-43 failing happens in nearly all MND patients and therefore this question carries huge relevance. The mysterious and problematic issue is that TDP-43 is present in all cells of our body, where it carries out essential maintenance functions. The mystery

is, why do problems in TDP-43 specifically cause motor neurons to die and not all other cells? “It is such a vital protein that we can’t think of genetically eliminating it – it has to be a more subtle and refined intervention. “Hopefully this will be something we can target with therapies. “Although a transformative therapy has not yet been developed, the progress in our understanding of MND in the last decade has been huge. “I started work on MND in 2009 and if I think of what we have learned about the disease, what causes it and what the mechanism is, it really is extraordinary.” To get involved with AMBROSIA visit wwww.mndassociation.org/ ambrosiastudy

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Putting people with MND at

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the heart of our research W

HILE much of the Association’s research centres around finding ways to diagnose MND faster, how to delay its onset and most importantly developing possible treatments and ultimately, a cure, we also fund important research into healthcare. Our current healthcare portfolio covers a vast range of topics, from capturing the precise number of people living with MND in England, Wales and Northern Ireland through the MND Register, to targeting psychological well-being and managing physiological symptoms.

“There’s a lot of research looking for new treatments and a cure but it’s also really important that we think about the health and wellbeing of those who are already living with MND.”

Professor Carolyn Young and the team from The Walton Centre

but it’s also really important that we think about the health and wellbeing of those who are already living with MND. It’s about putting the patient first.” To find out more about Prof Young’s study, or to get involved, please visit https://tonic.thewaltoncentre.nhs.uk/ tonic-mnd

This work is vital to ensure that people who are living with MND receive the care they need now – and that their views and opinions are taken into account when shaping future care services. The Association’s Head of Research, Dr Nicholas Cole said: “At the MND Association, while our overarching vision is a world free from MND, funding research into the causes of MND with the hope of developing treatments, we also invest in projects that develop better care for those living with MND.” Optimising quality of living in MND (Opt-Life) Among the projects currently being funded by the Association is Optimising quality of living in MND (Opt-Life) which is being led by Professor Carolyn Young of The Walton Centre. By talking to people living with MND about the problems they face through interviews, focus groups and questionnaires, the project will identify ways in which quality of life can be improved at different stages of the disease, shaping the provision of care in the future. Prof Young, who is a Consultant Neurologist, said: “There’s a lot of research looking for new treatments and a cure

lack of empathy as well as problems with planning and decision-making. This can contribute to issues with disease management and prognosis and can also put huge additional strain on carers. People living with MND will be invited to contribute to the project and the findings will be included in a draft toolkit, produced by clinical and academic experts. Further testing in clinical settings will help to improve the toolkit and its impact on quality of life, disease management and symptom progression will be measured.

You can find out more about our other healthcare projects by visiting the following websites: MND Register of England, Wales and Northern Ireland https://mndregister.ac.uk Prof Eneida Mioshi

Developing the MiND Toolkit Another project being funded by the MND Association centres around providing a toolkit to support people who are experiencing cognitive and behavioural symptoms as a result of MND and develop clinical guidelines to be used nationally and internationally. Called Developing the MiND Toolkit, the project is being led by Professor Eneida Mioshi of the University of East Anglia. A large number of people who are living with MND experience behavioural difficulties such as lack of interest and

Evaluation of post-gastrostomy management in MND (PostGas) http://bit.ly/PostGas Acceptance and Commitment therapy for people with MND (COMMEND) http://bit.ly/COMMEND Projects co-funded under the Marie Curie Palliative and End of Life Care grant scheme http://bit.ly/mc-mnda To get involved in MND research studies, please visit our dedicated webpages: www.mndassociation. org/get-involved-in-research

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Power of Attorney – what you need to know

OR many people living with MND, getting as much information as possible and planning ahead is an important part of coping with the disease. One of the ways you can start to prepare for the future is by taking out a Lasting Power of Attorney (LPA) – known as an Enduring Power of Attorney in Northern Ireland – to ensure you have a relative or trusted friend to make decisions if you are unable to communicate your wishes. It is important this is done while the person retains mental capacity. An LPA is a legal document which is registered with the Office of the Public Guardian (OPG) and there are two types, one for property

and finance and one for health and personal welfare. You can choose to make one, or both. In Northern Ireland, the EPA is registered through the Office of Care and Protection and only covers property and finance. One man, who is living with MND, said he had now decided to take out an LPA having learnt about it through his local hospice. He said: “The interesting thing was that an LPA can cover day-to-day things such as banking, paying of bills and general housekeeping matters as well as health and medical issues and decisions that need acting upon, especially in the latter

stages of a person’s illness.” The cost of registering an LPA has recently fallen to £82. A 50% reduction can also be applied for if the person for whom the LPA is required has an income of less than £12,000 per year before tax or is on certain means-tested benefits. You can apply to make an LPA by visiting www.gov.uk/powerofattorney or by writing to The Office of the Public Guardian, PO Box 16185, Birmingham, B2 2WH. In Northern Ireland, you can write to The Office of Care and Protection Room 2.02, First Floor Royal Courts of Justice, Chichester Street, Belfast, BT1 3JF or visit www.nidirect.gov.uk

The challenges faced by carers on a daily basis will also be highlighted and the MND Association will be meeting with MPs to discuss this in greater detail.

Hosting an event is a great way of raising awareness about the work of our carers and more information is available by visiting www.carersweek.org

Healthy and connected

HE MND Association is once again proud to be involved in Carers Week this year. Being held between 11-17 June, the event aims to raise awareness of the different ways caring can affect the health and well-being of carers and how this might be lessened in communities where carers feel supported to look after their family and friends and are recognised as people with individual needs of their own. During the week, the contribution of the UK’s 6.5 million carers will be celebrated and there will be opportunities to access support, advice and information.

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Information updates Eating and drinking with MND – web app Our new companion web app to the eating and drinking guide. This enables mobile access to the easy-swallow recipes, when shopping for ingredients or preparing food. The web app can be used on smart phones, tablets, laptops and PCs. All of the recipes from the guide are featured, along with key points, summarised from the information section. The web app even features a handy search facility to help you find recipes by key word or ingredient. You can find details about the guide and the app at: www.mndassociation.org/eating

What is MND? A new animated short video to provide a quick audio-visual overview on MND. This is aimed at people with or affected by MND following a diagnosis. You can find the animation at: www.mndassociation.org/whatismnd A further animation is in development, called What is Kennedy’s disease? This will launch soon and be announced in the next edition of Thumb Print.

Information sheet 3A – MND care centres and networks

Information sheet 14A – Advanced decision to refuse treatment (ADRT):

This sheet has been revised to ensure all details are correct. It explains how our partfunded MND care centres and networks help people with MND and their carers.

This sheet has been revised to help people with MND create valid and applicable ADRTs, in case they become unable to make or communicate decisions about refusal or withdrawal of treatments in the future. The sheet includes a completed example of an ADRT and a blank form to use if wished.

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

good. When I have done this sort of thing at home, I have felt quite sick but this time I didn’t feel sick at all.”

Our vision could be your legacy More information can be found at: www.mndassociation.org/legacies. Alternatively, call fundraising on 01604 611860 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, while 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. 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.

Becoming a trustee has given me purpose One of the many ways you can get involved with the Association’s work is by becoming a trustee. Our trustees come from all walks of life and have a very important part to play in how the Association is run. Here, Jan Warren explains how caring for her husband David, who sadly died from MND in 2015, led to her becoming a trustee and how her very personal journey with MND continues to this day.

“D

AVID loved to laugh. He was a big man with a million stories to tell. He was a real raconteur, he was so funny and most of all he was my best friend.” Jan Warren and her husband, David, a graphic designer and typesetter, had been happily married for 30 years, had five children between them and had recently moved from London to Northamptonshire to begin the next chapter of their lives when he was suddenly diagnosed with MND. Jan explained: “In 2009, David had a heart attack and a stroke but he had fully recovered. He had been working in London when he told me he had been experiencing pain in his legs. He said he thought it was because he was getting old, but it got worse. He was a typical man, didn’t want to go and see the doctor, but I made an appointment for him. “I went with him and our GP asked him to undress. I was immediately struck at how thin his legs had become and how I could barely see any muscles in the top part of his legs. I remember saying, ‘What has happened to your legs?’ “He struggled to sit back up again and I asked the GP what she thought could be wrong. She said she thought it might be MND, multiple sclerosis (MS) or a problem with his kidneys, but she wanted him to go to hospital to see a neurologist.” The couple continued with their lives and celebrated Jan’s birthday with a trip to The Ritz Hotel in London.

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“It was wonderful,” she said, “but I knew something was seriously wrong when he fell out of a cab. “I immediately rang the hospital and said he couldn’t wait for an appointment and that he needed to be seen urgently. We got an appointment and were told we would receive the results within a week to ten days. Later that afternoon I received a phone call to say his results were back. “I remember going to the hospital and the consultant said, “You have MND. You will need to go into palliative care,’ and that was it. My world shattered.” Jan and her family started to research the disease in greater detail and soon realised the extent of his condition. She said: “I had never heard of MND until the Ice Bucket Challenge, but when you start to research it, it is awful.

“Becoming a trustee has given me purpose and I want to make sure people living with MND never have to experience what we did.” “David was being very brave and stoic but I just cried, I realised he had been handed a death sentence.” Desperate for help, Jan called the Northamptonshire branch of the MND Association where she spoke to chairperson, Kate Inchley. She said: “I was in floods of tears, not knowing where to turn and I said to Kate, ‘I need help.’

“She was amazing and told me the Association was there to support us and that we should go along to their drop-in session the following Wednesday. “I just cried through the whole thing but David spoke to a man whose wife had MND about different types of cars. I just said I didn’t want to be his chauffeur! “We always had a strong sense of humour and that helped us get through it. We did laugh a lot, but there were a lot of dark times too.” Jan described how his condition worsened after being diagnosed with pneumonia and how shocked she was at how little those who were treating him seemed to know about MND. She said: “We had huge support from our local hospice which helped us in every way it could. We also could not have coped without the support of our neighbours and friends, but the treatment he received in hospital was just awful.” Just two days after being admitted to the hospice, and just 20 weeks after being diagnosed, David died with Jan by his side, as she had always been. A year after David’s death, Jan became a trustee of the MND Association – determined to put her years in accounting and her experience as a carer to good use. She said: “Becoming a trustee has given me purpose and I want to make sure people living with MND never have to experience what we did. “The training course is brilliant. I have a very fertile mind and I already feel as

“We need people with MND to join our board”

EOPLE living with MND are at the very heart of everything we do and it is vital their voices are heard within our Board of Trustees.

“Our trustees have a unique opportunity to steer the direction of the Association and influence the work we do in the future.”

Jan’s daughter Janaya with her father, David

though I have made a difference. “The MND family is amazing and it is fantastic to be able to learn more about the work the Association does.” During 2018, Jan will also be taking part in a Year of Challenges to raise money for the Association. She said: “People can go onto my JustGiving page www.justgiving.com/

fundraising/JanWarren184 and suggest challenges for me to do in exchange for a donation. I’m hoping to do an Ice Bucket Challenge or hose down at our local fire station as well a cocktail crawl and anything else that gets suggested. I just want to do anything I can to help. David’s journey with MND ended on 9 September 2015, but mine will continue forever.”

How you can become a trustee To become a trustee you must already be a member of the Association and be nominated and seconded by existing members. Nominations for election in June are now being taken. You can apply by completing the form which can be found in this edition of Thumb Print or you can visit www.mndassociation.org/trustees2018. You will be asked to give some information about your knowledge and experience of MND. The closing date for nominations is 8 May, our members then vote and successful candidates informed of the result prior to the AGM in July. Our new trustees formally take up office at the AGM on 14 July.

While many of our trustees bring valuable experience of caring for loved ones with MND, the Association is also particularly interested in hearing from people who are living with MND and are willing to put themselves forward for election. Chief executive Sally Light said: “To ensure the Association continues to represent the views of people living with MND, it is of paramount importance to have people living with the disease on the Board. “Our trustees have a unique opportunity to steer the direction of the Association and influence the work we do in the future, so being able to draw on the personal experience of those who are living with MND is absolutely essential.” The Association is committed to support any trustee living with MND – or any other disability – with their role and will do everything possible to meet individual needs, as well as those of their carers. Help is also available with transport, travel and accommodation. In addition, trustees living with MND do have the option to cut short their three year term should they wish to. To find out more about becoming a trustee, visit our website www.mndassociation.org/ getinvolved or speak to Sally Light, chief executive on 01604 611820.

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Coming to a town near you!

ANTRIM

SATURDAY 15 SEPTEMBER

KENDAL SUNDAY 29 APRIL

UR regional conferences, which give people living with MND, their families and carers the chance to find out more about the work we do, are coming to a town near you. Held throughout the year, the conferences enable our members to meet staff from the Association, find out more about the work which is going on in their area and how we can offer support. Chief executive, Sally Light said: “We’re delighted to invite you to our friendly, informal conferences and hope we will see you at one of the events during the year, whether you are living with MND, are a family member, a volunteer or if you have a professional interest in the work we do. “Each event has a bespoke programme and the Care and Campaigning sessions always have a local feel. During the Research session, an invited speaker will also give an update on a project of local interest. “If you are unable to make it in person, all of our conferences are broadcast live via our website to make sure as many people as possible are able to hear the latest news.”

BEDFORD SATURDAY 24 MARCH

BRISTOL

(TAKEN PLACE)

SUNDAY 20 MAY

Each venue is hand-picked by our Conference and Events team to ensure they have the best possible disabled access and offer value for money for anyone who wishes to stay overnight.

“Each event has a bespoke programme and the Care and Campaigning sessions always have a local feel.” The day begins at 10am and runs until 4pm and there is always plenty of time to network and make friends with other delegates. Our next regional conference will be

held at Castle Green Hotel in Kendal on April 29 and there is still time to register. There is no fee for people living with MND, family members, carers or registered Association visitors. For other delegates there is a registration fee of £15, which includes lunch and refreshments. Parking is free. Other regional conferences will be held on May 20 at the Holiday Inn Bristol Filton and on September 15 at Dunsilly Hotel, Antrim, Northern Ireland. For more information visit our website. Have you visited a regional conference and found it useful? Email clare.brennan@ mndassociation.org with your views.

To book your place, visit www.mndassociation.org/regionalconferences, email conference@mndassociation.org or call 01604 611837

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Looking ahead to our

AGM You will be able to learn more about virtual reality at this year’s AGM

EADING MND researcher Prof Martin Turner will be the speaker at the MND Association’s AGM and annual conference in July. Prof Turner, who is a leading professor of clinical neurology and neuroscience, will discuss his latest research investigating potential biomarkers of MND at the event which takes place at the Radisson Blu Hotel East Midlands Airport on 14 July. During the day, delegates can choose to take part in one of three workshops covering legacies, the Care Survey or the work of MND Connect, as well as meet staff, volunteers and trustees and enjoy treatments courtesy of complementary therapists. This year, we will also be offering the chance to try out virtual reality, a computer generated technology which simulates 360° real life experiences from the comfort of your chair. Immersive,

therapeutic and moodenhancing, you can choose from sports, nature or travel experiences. In the afternoon, the formal business of the AGM will take place and there will be opportunities to ask our trustees questions as well as look back over the year’s events. For more information, or to register, visit our website at www.mndassociation.org/ agmandannualconference

Prof Martin Turner

Calling all members – Sign up now to get your AGM Voting Pack by email and help us save money!

HE 33rd Annual General Meeting (AGM) takes place on Saturday 14 July 2018. As a membership organisation it’s important to us that as many members as possible take the opportunity to vote on key decisions for the Association, like elections to the Board of Trustees. In previous years, we have printed and posted more than 8,400 election packs to members. This is an extremely costly process, diverting vital resources away from our work for people with MND. In an effort to conserve precious funds, this year we are asking members to send us their email addresses

to receive all the information they need about voting at the AGM. Your email address will only be used for this purpose and future membership communications and will help us to save substantial costs on printing and postage. You can change or stop these communications at any time. If you have already given us your email address there is no need to complete this form as you will automatically receive your pack electronically. Please note, if you are unable to receive email we will continue to print and post out your AGM Voting pack as before. To sign up please go to www.mndassociation.org/agmnopost

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Campaigners push for change T

he MND Association parliamentary reception took place in October 2017, with a record attendance from those living with MND. Among them was Heather Twine, a Campaigns Contact volunteer, who lives in Somerset with her husband Tony, and is a member of the South and East Somerset Branch. Heather had taken part in constituency engagement with two of her local Members of Parliament (MPs) in 2017 to discuss the financial impact of living with the disease.

“Alex seemed genuinely upset by my situation and agreed someone with a terminal illness should never have to go through a reassessment nor be asked to complete excessive paperwork in order to make the original application.” While at the parliamentary reception, Alex Chalk, MP for Cheltenham, expressed an interest in discussing MND Costs, and the campaign to scrap benefit reassessments with local residents who had personal experience of the condition. On 2 February, Mike Crisp, who is living with MND and Alan Marsh, the Campaigns Contact volunteer for the Gloucestershire Branch, met with Mr Chalk to share their experiences of MND, and why they believe scrapping benefit reassessments for Personal Independence Payment (PIP) is so vital for all those living with this MND. Alan, sadly lost his wife Lena to MND, said: “The meeting demonstrates the importance of awareness raising at conferences and receptions. His meeting with Heather gained him an insight into MND, which led to him wanting to meet someone living with the disease locally, to discuss how he could help. “The more people we can talk to will potentially enable us to speak to the

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Mike Crisp

Alan Marsh, pictured with his wife Lena who sadly died from MND

decision-makers. “This will hopefully make the lives of people living with MND more bearable, until one day we are living in a world free from MND.” Mike added: “Alex seemed genuinely upset by my situation and agreed someone with a terminal illness should never have to go through a reassessment nor be asked to complete excessive

paperwork in order to make the original application. “I came away with a real sense that he was on ‘our side’, and would honour our request to write to Sarah Newton MP regarding scrapping reassessments for PIP for those living with MND.” To find out more about Mike’s MND journey, please visit his blog Pain in the ALS www.painintheals.co.uk

Help us to shape the future of social care

HIS year, the Government will set out its plans for the future of social care and the way it is currently funded in England. The Government’s plans will have a huge impact on people living with, or affected by MND and the period of public consultation, which is expected to take place during the summer, will be a key opportunity for the Association to influence what happens next. The poor state of social care is not a new issue and over the past 20 years there have been multiple reviews of the system with little resolution. Here, we will clarify what social care is, give a brief overview of the current challenges and tell you how you can help us by getting involved. What is social care? Many people living with, and affected by MND, rely on social care on a daily basis. When we talk about adult social care, we mean the provision of help, care and protection from harm for adults with disabilities, health and care needs. The main responsibility for publically-funded social care lies with local government. They provide information and advice, assess needs and finances, provide short-term support, safeguard vulnerable adults and buy and monitor social care services locally. The care itself is carried out by a variety of organisations and professionals, from care workers employed by agencies to provide care in someone’s home, to residential or nursing care homes. As many of you will know, a large amount of social care is also provided by families, friends and loved ones – there are almost six million unpaid carers in England. It is estimated the care provided by unpaid carers saves the state almost £60 billion per year in social care costs. Many people are surprised when they find out that social care is not free at the point of access like the NHS. To access publicallyfunded social care your needs have to be high enough to meet certain criteria and your means (income and savings) have to be below a certain level. If you have more than a relatively small amount of income and savings you have to pay for some or all of your social care. Many people who don’t qualify for publicallyfunded social care pay for it themselves, which can result in significant financial costs. What are the issues? As it currently stands, the social care system is struggling to meet the needs of older and disabled people, including people living with MND. The impact of a growing older population and increasing needs with limited social care funding means there is significant pressure on the social care system. If nothing changes, it will likely reach breaking-point. Finding a solution will not be easy and will be one of the most difficult policy challenges for the Government to address. There is widespread agreement the current system isn’t sustainable and

long-term changes are needed in the way social care is paid for by individuals and the state. However, there is little agreement on how things should change and how the system should be funded in a way that is not only sustainable, but also fair. What is the Association doing? The Association is a member of the Care and Support Alliance (CSA), an alliance of charities campaigning for a properly funded social care system that works for everyone – older people, disabled people and their carers. As one of over 80 members of the CSA, we will work to ensure the experiences of people with MND are heard. Our next opportunity to influence the Government’s thinking on social care is to respond to the Government’s proposals for the future, which are due to be published in the form of a Green Paper this summer. This Green Paper will set out the Government’s ideas for how the system could work and be funded for the future, with the aim of bringing about discussion on these ideas to reach a consensus. We aim to be a part of this discussion and to do so in the most effective way possible, we need to hear from you. We are looking for people living with and affected by MND to share their personal stories with the Association. If you would be willing to help please contact campaigns@mndassociation.org. In particular, we are looking for people who can give us details as to how their care is funded, what the assessment process was like, what their experience of the social care they receive is like and the overall impact of social care on you, your finances and wider health and quality of life. For further information on social care, please refer to information sheet 10F, Your rights to social care at www.mndassociation.org/about-mnd

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Celebrating the women Celebrating women has been a big part of 2018 so far with the 100th anniversary of women winning the right to vote in February and International Women’s Day on 8 March. Here, Thumb Print shines the spotlight on just a few of the women who are at the cutting edge of MND research and finds out more about their work.

Professor Dame Pamela Shaw is a Professor of Neurology at the University of Sheffield. She received her Damehood in recognition of her extraordinary contribution to neurosciences including revolutionary research in MND. Professor Shaw’s research goals include understanding the function of motor neurones in health and disease, translating basic science findings into health benefits, fostering excellent training for clinical and scientific staff, and providing excellent clinical care for people with motor system disorders.

Dr Janine Kirby is based at the University of Sheffield in the Sheffield Institute for Translational Neuroscience (SITraN). Janine’s research interests are the genetics of MND and how ‘transcriptomics’ (a method to determine which genes are involved in MND) can be used to understand the mechanisms of the disease. These findings can then help to identify potential targets for therapeutic intervention, as well as establish biomarkers for diagnosis or disease progression.

Professor Frances Platt at the University of Oxford is investigating the role of the cells’ recycling and disposal systems, which, when faulty, may allow a build-up of toxic protein clumps in motor neurones. Frances’ team are using patient blood samples, cell lines and post-mortem tissues, as well as various samples from mouse models to gain a detailed understanding of this process, both in heathy and diseased neurons. It is hoped that manipulating this recycling and disposal systems may provide therapy for MND or prevention of its development.

Christina Zarouchlioti is a PhD student at University College London. The aim of her studentship is to explore ways to manipulate cells’ defence machinery in order to prevent proteins from clumping together, which has been suggested as a potential cause of toxicity in motor neurones of people with MND.

Professor Linda Greensmith runs the Graham Watts Laboratories at UCL Institute of Neurology. Her lab undertakes research focused on improving our understanding of motor neurone degeneration. Linda’s group is recognised for their expertise in mouse models of MND and for undertaking pre-clinical trials, with the long-term aim of translating these findings into disease-modifying therapies for people with MND.

Dr Emily Feneberg is a neurologist working towards her Doctor of Philosophy degree in motor neurone disease (MND) at the University of Oxford. Emily is aiming to develop a disease-specific biomarker reflecting the main pathology of MND. This biomarker could then be used as a diagnostic and prognostic test for MND, which would also significantly improve the development of new therapeutics.

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behind MND research What do you enjoy most about your work as a researcher? Dr Janine Kirby: “Supporting students’ transformation into young researchers and disseminating my research to people with MND, carers and the public. The MND community is a great network of friends and colleagues.”

Are there steps that need to be taken to increase the number of women going into research and/or to improve conditions for those already in the field?

Professor Dame Pamela Shaw: “The value of teamwork involving clinicians and scientists to make progress in understanding the mechanisms of MND and translating these insights into experimental medicine approaches to make a difference to outcomes for people with MND.”

Professor Dame Pamela Shaw: “Continued progress towards pay parity. Increase in the number of support schemes for maternity leave. Address the high cost of child-care schemes in the UK. Each family has to work out an approach that works for them – but perhaps a gradual evolution towards men having support to contribute on a more equal basis to parental responsibilities.”

Christina Zarouchlioti: “The day-to-day life of a researcher is really diverse, keeping the work exciting. Although it can be challenging from time to time, the feeling of satisfaction that comes from making novel discoveries that contribute to the scientific field is extremely fulfilling and makes the journey worthwhile.”

If you talk to a 12-year-old girl who shows a passion for science, what might you most want her to know?

What advice would you give to women/women scientists? Dr Emily Feneberg: “Engage with research and to actively promote your work, don’t always wait until you are asked.” Professor Dame Pamela Shaw: “Find a role model and mentor to help you navigate the balance of work and home commitments and find the support to build your confidence and scientific standing as your career develops.”

Dr Janine Kirby: “She should pursue her passion and her gender shouldn’t stop her.” Christina Zarouchlioti: “I would tell her to be original, creative and have confidence in her ideas. Many times, things won’t work out exactly as planned, but as long as she keeps learning, adjusting and stays passionate, science won’t disappoint her.” Professor Dame Pamela Shaw: “I would want her to meet an inspirational scientist who can show her the joys of scientific discovery and the impact this can have on the lives of our fellow humans.”

Prof Frances Platt: “Persevere whatever the setbacks along the way and above all get a good mentor.”

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Help to make life a little bit easier

A fresh look at volunteer support for people affected by MND

n the winter edition of Thumb Print we invited readers to send in any hints and tips they might have to help make life more manageable for those living with MND.

Helena and James Schofield

Helena Schofield, whose husband James lost his battle with MND in July last year, said: “He came up with this very good tip for his hands which curled up to such an extent he couldn’t use them. This problem also resulted in his fingers becoming infected as the skin was prone to sweating. “Jim was an engineer – he could make and fix anything – and he came up with the idea to use hair rollers, which I wrapped a few times with crepe bandage as they were prickly. “The rollers were inserted in his palms under the fingers He used small ones, one in each hand, during the night and medium ones during the day. “Because air was allowed to circulate, the infections cleared and his hands remained in good condition. “At the end of the day, only people who have experienced living with this horrendous disease truly know what it is like and any help, in any way, no matter how small it seems goes a long way in making each day a little easier.” If you have a hint or tip you would like to share please email clare.brennan@mndassociation.org

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VER the next two years the MND Association will be looking at how it can provide a bigger and better volunteer support service and we need your ideas to help us make it happen. The work of volunteers is central to everything the Association does and we want to look at the ways we can improve

the support we offer to people affected by MND. As this project begins, we are keen to hear your ideas for where improvements will be made – every suggestion will receive a response. For more information and to find out how to give involved please visit www. mndassociation.org/supportvolproject

Snap into action for Microvolunteering Day

ET involved with volunteering for the MND Association by taking part in Microvolunteering Day on 15 April. Microvolunteering allows people to do short, quick activities to support a cause they care about without taking up too much time. Every contribution – no matter how small – helps to raise awareness and there are a wide variety of activities to choose from. To find out how you can get involved visit www.mndassociation.org/snapaction

“I hope my gift will help to create a world free from MND”

supporter, whose uncle was diagnosed with MND and died just five months later, is fighting back against the disease by remembering the MND Association in her Will. Wendy Buchan decided to take steps to make sure the MND Association benefitted after her uncle, Raymond Sparks, was diagnosed with MND in 1994 and sadly died aged just 46. She said: “Everything happened so quickly. In October my uncle had a slight drop in his foot. By Christmas he was in a wheelchair and three months later he died. We were all devastated. He was the life and soul of the party, the glue which held our family together. My father lost his brother and his best friend.

“When it comes to my Will, MND Association was always going to feature and the gift I’ve left I would like to go towards research.” “Without the MND Association, the short time we had with him would have been unbearable for us – but especially for him. That’s where our Association visitor (AV) worked wonders. She is a force of nature and sourced the equipment we needed to look after him. “While I am alive, I will carry on giving to the practical side of the Association’s work because I know the difference the little things, like a wheelchair, ramp or a stair lift can make. “When it comes to my Will, MND Association was always going to feature and the gift I’ve left I would like to go towards research. When you’re diagnosed with MND, it’s brutal. There is no hope. I’d like to think my legacy gift will one day help to give the world hope for a world free from MND. “Of course a cure for MND is at the top of my wishlist, but I know that may take years – even decades – we can’t afford to lose a single gift, every penny matters, a legacy doesn’t need to be a huge amount.” After Ray’s death, Wendy decided to support others affected by MND by volunteering for her the Mid Kent Branch. She also set up The Raymond Sparks Tribute Fund and Wendy’s legacy will be left to the Tribute Fund, creating a lasting memory of her uncle Ray. If you would like more information about leaving a legacy, please call us on 01604 611898 or email legacies@mndassociation.org Wendy Buchan

ne of our long-standing supporters John Atkins celebrated his 100th birthday on Christmas Eve. Mr Atkins has been supporting the Association’s work since 2006 through regular donations and appeals. He has also kindly remembered the Association in his Will. He was inspired to get involved with the Association’s work as he was huge fan of the actor David Niven who died from MND. Our picture shows Mr Atkins celebrating his birthday alongside Emma Fellows and Tess Moore from the MND Association.

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“Remembering Mum

One of the many events held to raise money for The Eileen Taylor Tribute Fund

HEN Eileen Taylor sadly died from MND in 2015, she left behind family and friends from all four corners of the country eager to remember her and her ‘fighting spirit.’ In the months following her death, Eileen’s family decided to set up a Tribute Fund in her memory and launched a year of fundraising to raise money for the MND Association and awareness of the disease at the same time. Eileen’s son, Mark said: “Mum was someone special to so many people both in her personal and working life. “She was loving and caring with a tremendous strength of character which shone throughout her life, her battle with motor neurone disease and finally in her death. Her fighting spirit and determination stayed with her throughout. “We got together initially looking to do one activity, to fundraise and that would

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be that. As we thought about it we felt we could try and do a little more. The ideas for activities kept coming until we decided we could fundraise over a full year.

“Mum was an inspiration to those who knew her and continues to be. Our fundraising was inspired by her, our lives will never be the same without her, but what she has taught us will be with us always.” “Key to our planning was the inspiration Mum provided. We wanted to fundraise in some of her favourite places, we wanted to involve her family, friends, surrounding community, work colleagues and anyone who knew her. The idea was that we would have a core set of events that could be added to throughout the year by anyone who wanted to join in.”

During the year, which started in May 2016 and ended in May 2017, Eileen’s family and friends took part in more than 20 core events, while other supporters organised their own. Mark said: “My sister Andrea spent one weekend each month for a year completely silent. She would finish work on a Friday and then not speak again until Monday morning to highlight the difficulties people with MND face when their speech begins to fade. “Andrea is a big supporter of Brighton and Hove Albion Football Club and she once went to a match, staying completely silent throughout – that was really hard for her, particularly when they scored! “My Dad, Bill, also shaved his head and raised £180.” Mark explained that setting up the Tribute Fund and organising the events had helped the family to cope with their grief.

and her fighting spirit” He said: “Joining up with so many people who knew Mum was an amazing experience – we were able to share moments and reflect on our own relationships with her. As a family, we heard so much about her that we might not have known. “She loved her family and her local community. She was someone who was prepared to fight the cause of others, and was someone who would stand shoulder to shoulder in your corner. She was a strong woman with a sense of humour.” This sense of humour also helped the family to come up with an informal name for Eileen’s Tribute Fund. Mark said: “As her voice began to fail, the MND Association provided a communication aid which enabled her to type in what she wanted to say. It also recorded some key phrases. The first on the machine was, ‘Mine’s a gin and tonic!,’ and this became the name. “Mum was an inspiration to those who knew her and continues to be. Our fundraising was inspired by her, our lives will

Eileen Taylor (pictured right)

never be the same without her, but what she has taught us will be with us always. “We would like to thank all those people we have met and spent time with

during the fundraising year and since. From family and friends, colleagues to the new friends we have met, you know who you are.

To find out more visit the family’s blog at https://minesaginandtonic.wordpress.com For more information about Tribute Funds visit mndassociation.org/tributefunds or alternatively, please call 01604 611864.

Tributes paid to Sir Roger Bannister

SSOCIATION patron Sir Roger Bannister died in March at the age of 88. After becoming famous for being the first athlete to run a mile in under four minutes in 1954, Sir Roger became a neurologist. In 2017, he was made a Companion of Honour for services to sport. Chief executive, Sally Light said: “Everyone at the Association has been saddened to hear the news of Sir Roger’s passing. “We will always remember him for his work as a leading neurologist and as a tireless patron for the MND Association. We were privileged to have had his support.” Tributes paid to Prof Stephen Hawking: Pages 8 and 9

Help to improve standards of MND care

ELPING health and social care professionals to provide the very best care they can for people living with MND is the purpose of a new audit tool created by the MND Association. The Transforming MND Care Audit Tool is based on the NICE guideline on MND which covers the assessment and management of MND. It aims to improve care from the time of diagnosis and covers information and support, organisation of care, managing symptoms and preparing for end of life care. Services use the MND Association tool, review patients’ notes and get their feedback, which is then recorded on the tool. The MND Association then analyses the data and produces a series of recommendations. They also get a Regional Care Development Adviser contact in their local area to help them develop a plan. In addition, a report called The State of MND Care in 2017 in England, Wales and Northern Ireland is due to be published at the end of April which will give an overview of best practice, areas for improvement and details of some innovative services who are providing care for people with MND.

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Stacey’s raising £40,000 at 40 W

HEN Stacey Kerr turned 40 at the beginning of the year she decided to mark her milestone birthday by challenging herself to hit her £40,000 fundraising target. Stacey sadly lost her mum, Gerry to MND in 2005 and since then has dedicated much of her time to raising awareness of MND as well as vital funds for the Association. She explained: “I started fundraising in 2015 after seeing an advert to trek Kilimanjaro and since then I have raised £37,028. “I was 40 in January so I came up with the idea of #40kat40forMND. I am now just £2,972 from my target. “I have held race nights, 70s and 80s nights, a Northern Soul night and have climbed Snowdon, Scafell Pike and, of course, Kilimanjaro. “It has been a family affair, my two children Caitlin, who is 16, and Cameron, who is 13, have done a 5k fun run, a 5k Santa dash and also a sponsored silence raising more than £1,000 in their own right. “I have another 10k, a 24 hour running event and a second Winter Ball planned

for this year – hopefully these will smash the £40,000 target.” Stacey also volunteers for the Manchester Branch of the Association, helping to promote other fundraising events, organising branch activities and visiting people who are living with MND at home.

“I am keen to raise awareness. I managed to get Manchester Town Hall, the Trafford Centre and the Noma tubes lit up in Association colours for Awareness Month.” She said: “I am keen to raise awareness. I managed to get Manchester Town Hall, the Trafford Centre and the Noma tubes lit up in Association colours for Awareness Month, but perhaps my proudest moment was lighting up the Blackpool Tower for Global Awareness Day in 2017.” If you would like to help Stacey reach her target visit www.justgiving.com/ fundraising/mnd-manchester-anddistrict-branch Stacey Kerr pictured with her family

Stacey climbed Killimanjaro Stacey’s mum Gerry sadly died from MND in 2005

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Stacey is planning to hit her £40,000 fundraising target to celebrate turning 40

Virtual racing fires up the imagination of fundraisers

IRTUAL races have continued to capture the imagination of #TeamMND this year, with supporters signing up to walk, run, cycle and swim. They have all chosen the distance they want to complete, including running a half marathon on a treadmill, walking 10,000 steps per day for a month or swimming the length of English Channel in a public pool over a period of weeks.

Sam Anderson, pictured with his mum’s best friend Vicky, who is living with MND

One of those who has challenged himself is 26-year-old Sam Anderson, who wants to run at least one mile per day with the target of reaching 1,000 miles by the end of the year. Sam is raising funds in honour of his mum’s best friend Vicky, who is living with

MND. He started his challenge on New Year’s Day having not run for five years. Sam, who plans to run the Manchester 10k in May and the Great North Run in September, said: “Vicky loves the fact I am doing this. It gives her something to think about. This is something positive for her. She is constantly texting me asking how I am doing. She always says, ‘Well done and keep going,’ it makes it all worthwhile. “There have been days where I haven’t wanted to get up and go out and run. Thinking about Vicky gets me out running.” Natalie Burton has challenged herself and her two dogs Nora and Milo to walk 1,000 miles during 2018 in memory of her dad who had MND. The 52-year-old mum of two said: “Dad loved being outside, as I do. He was a very active man and loved dragging us up hills and along the coastline. I’m sure Dad is nagging me over my shoulder saying, ‘Come on, keep it up!’ He was my inspiration and I adored him.” Beauty therapist Natalie, who is clocking up around 20 miles per week, has organised a fundraising walk and picnic around Stratford Upon Avon in July and will be joined by members of the dog walking group she attends, the Warwickshire Doodle Dashers. She added: “My husband Kevin and I are both keen walkers and having Nora and Milo gets us out every day. Nora and Milo will always be with me. I wouldn’t get out of the door without them.” You can sign up for your own Virtual Race with #TeamMND today: www.mndassociation.org/mnd-event/ virtual-races/

Stuart and Chris Broad

Celebrities take to the floor for glittering fundraiser

ELEBRITIES from the world of entertainment and cricket are set to light up The Dorchester Hotel in London this September as The Broad Appeal hosts a glittering event to raise money for the MND Association. Former England cricket batsman, Chris Broad, his wife, Rosemary, son, Stuart, a current England cricketer and his daughter Gemma will be hosting the event, called Strictly Cricket, on 12 September, featuring a Champagne reception, dinner, a live and silent auction, as well as a question and answer session with Stuart and his England colleagues, chaired by David Gower. Sporting legends and celebrity supporters will also take to the floor alongside professional dancers to a live band, ending what promises to be fabulous evening of entertainment. The Broad family set up The Broad Appeal after Chris’ first wife Miche was diagnosed with MND in 2009. She sadly died in July 2010. Since then, the family has been heavily involved in raising on behalf of the MND Association and to date, more than £600,000 has been raised. To download a booking form, visit www.thebroadappeal/events.

Natalie Burton, who will be walking 1,000 miles with her dogs Nora and Milo in memory of her dad, who sadly died from MND

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branchesandgroups

Performers pledge to Make Now Different

EMBERS of the North Wiltshire Group took to the stage in November to perform in a new show called Make Now Different. Held at Swindon Arts Centre, the show, whose title uses the initials MND, was the brainchild of Carrie Baxter, who sadly lost her grandfather to the disease two years ago. Performers included the Mini Pops from Julie Scott’s Academy, female singing groups, The Noteables and The Songbirds, as well as professional performers Emily Gara, Rebecca Gilliland, Hywel Dowsell, and Ben Vivian Jones, who was also the compere for the evening. Towards the end of the show, The Noteables performed I’ll be there for you, poignantly wearing their blue Association T-shirts and all the performers took to the stage for a rousing finale of Always look on the bright side of life. With ticket and programme sales, a raffle and a merchandise stall, the evening raised £1,040.

Members of Native River the winners of the quiz

Quiz event raises £2,000

UIZ team Native River were the winners of a quiz night held to raise money for the MND Association in March. The event, organised by members of the East Surrey Branch attracted 120 fundraisers who answered questions on a number of subjects including TV gold, Six Nations rugby and current affairs. As well as the quiz, everyone enjoyed a supper of Irish stew and dumplings and a raffle helped to raise £2,000 for the branch. Branch chairman and quizmaster, Simon Edmands said he was very grateful

for everyone who had supported the event so generously.

PAELLA lunch and an afternoon of live music were enjoyed by members of the branch when they met for their first open meeting of the year. On 28 January, more than 50 members and supporters of the branch were entertained by the Badger Set Band, who performed classic tunes and songs. Lunch was provided by John Robbins and his assistant Pip Fitzpatrick, who cooked two giant paellas, while a raffle and fundraising during the day raised £500.

The cast of Make Now Different

Send news from your branch your group to clare.brennan@ mndassociation.org The Badger Set Band get ready to perform at the East Surrey branch open meeting

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thankyou

Share your pictures at www.facebook.com/mndassociation Gifts that keep on giving: A surprise 74th birthday party for Ricardo Andrada, who is living with MND has raised £2,112 for the MND Association. His daughter, Anna said: “We asked friends and family to donate money rather than give Dad a gift, this was our way of trying to give back. Every day since he was diagnosed in 2010 my Dad shows me strength, willpower and faith. He’s taught me to appreciate life and my loved ones even more and to be thankful for every new day.”

Taking the plunge: A family, whose lives have been touched by MND have been raising thousands of pounds for the Association. Last year, Marian Hurley, who is living with MND, organised a ball, raising £10,700 to support our work. Inspired by the event, Marian’s great nephew, Lewis Bredemear, who is eight, raised £308 by taking part in the Killer Whales Club Championships, racing in the 50m freestyle, 50m backstroke, 50 metre butterfly, 50m breast stroke and 100m freestyle events. Marian and the whole family are very proud of his achievements.

Making a difference: Lily Whittaker, who is 11, has inspired her school in Thornbury, to support her in raising funds and awareness for the Association during 2018. Her uncle is living with MND and she is keen to do all she can to support our work. Lily hosted her first event in January, a table-top sale of cakes and pre-loved items and together they raised £367.59. She has lots more ideas for the year ahead.

A big step forward: Around 30 staff from the Advisors Team at Mastercard, in Canary Wharf, London organised a Walk to d’feet MND last October in honour of their colleague, Margot Vaughan, who is living with MND. They have raised over £1,000 so far and given us the opportunity to be accepted for Mastercard charity selection in their matched giving scheme.

‘In memory of Dad’: Brothers, Danny and Mark Gay took part in the Three Peaks Challenge in June to raise money for the MND Association and The Norfolk Hospice Tapping House in Kings Lynn, Norfolk. A total of £9,817 was raised and more than £3,800 was donated to the MND Association in memory of their dad Ellis, who sadly died from MND last year.

New York, New York: Liz O’Connor took a bite from the Big Apple when she took part in the New York Marathon in November to raise money for the MND Association in memory of her uncle Bryan O’Connor who died from MND last August. She raised over £400 and will take part in the London to Paris cycle this year on a tandem with her cousin, Stewart.

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thankyou Recipe for success: A bakeit! cake sale organised by Helen Martin raised an amazing £625 in memory of her dad, Eric Fantozzi and the parents of three of her friends, Richard Scoffin, Lyn Parry and Norman Higham who died from MND. Pictured from left to right are Becky Condon, Steph Parry and Naomi Higham.

Posties deliver a fantastic result: Lisa Charles and the team from the Royal Mail’s Whitwood Delivery Office in Castleford were inspired to Walk to d’feet MND when one of their retired colleagues, Peter Carey, who had been a postman for 34 years, was diagnosed with MND. Team leader Lisa Charles said: “Pete is one of the nicest people you could ever wish to meet so we wanted to support our good friend and his family.” On Friday 17 November, after normal deliveries, around 40 ‘posties’ walked the five miles through Normanton, collecting donations on the way. Pete’s daughter Jodie joined them and Pete managed to walk part of the way too. They raised an incredible £4,500 including matched giving from Royal Mail.

Weighing in on fundraising: A fitness fundraising challenge at a gym in Hemel Hempstead has raised more than £2,500 for the MND Association. The Lift4MND event, which was held at Nuffield Health Gym in June, was organised by Chris Rice, who is living with MND and his friend and training partner, Peter Hogg. During the day, Chris completed 500 repetitions of leg and abdominal exercises.

A year of fundraising: Vivienne Ball, who works for Broadway Pharmacy in Preston, nominated the MND as their Charity of the Year in 2017. They organised various activities including a raffle collection and a Ladies’ Night and raised more than £1,500 in honour of Vivienne’s son’s mother-in-law, Vicky round, who is living with MND.

Icy Challenge: Eleven members of the Friday Afternoon Crew, a golf society in Stratford, Warwickshire, held an Ice Bucket Challenge in December and raised over £3500. The icy challenge was inspired by Andy Western, a member of the society, who has recently diagnosed with MND.

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A family affair: Sisters Bethany and Olivia Neal, aged 15 and 13, held a bake sale at their school in Chatham and raised a fantastic £269.34 in memory of their Nan, Janet Lowry, who died in November. As a family, they have also pledged to run the Supernova 5k and the Vitality 10k in London next year.

thankyou When the going gets tough...: Mental robustness and determination helped a group of soldiers from 216 (Parachute) Signal Squadron complete a 100 mile race in memory of Major Tony McBean who sadly died from MND last year. The ultra-marathon, which was held in July, took in a ten mile route around Grimsthorpe Castle in Lincolnshire which the group completed ten times.

Showing her mettle: Lucie Gillett took part in the Holkham Outlaw Half Iron Man Triathlon last July in memory of her dad, Frank Gillett, who died from MND in 2011. The event was a really tough challenge but Lucie was keen to achieve something special and raised £4,244 including £1,000 for the Norwich and Waveney Branch.

For Grandma Val: Freya Melling, who is nine, took part in Silence Speaks last October and stayed silent for 24 hours, in honour of her Grandma Val. Before being diagnosed with MND, her Grandma used to tell her lots of jokes and funny stories and she misses hearing her voice, although they do still talk through her writing pad. Freya raised an incredible £530. Festive fundraising: While Santa was busy packing his sleigh, Sam Reed and Victoria Monk were taking part in a 51-mile cycle ride to raise money for the MND Association on Christmas Eve. The ride took place in the countryside around Suffolk and they raised over £2,300 in honour of Vicky’s uncle, Keith Hasler, who is living with MND. Keith inspired and encouraged them and was there to greet them at the finish line.

Finding comfort: When the Peak Patchworkers, from Derbyshire lost their friend Vicki to MND in 2016 they wanted to do something to remember her. They came together to make this beautiful 1920s-inspired quilt and Vicki’s husband, David, was so touched by the gesture that he made a generous donation to the Association in return for the quilt, which he keeps to remember his wife.

Going the extra mile: When John Spayne’s wife Jane Morphet was diagnosed with MND, his colleagues at Spayne Lindsey & Co decided to support the MND Association. They showed their support for John, who was the company’s managing director, by taking part in the Samworth Brothers Charity Challenge, pledging to raise £4,000. By the time the team had crossed the finish line over £60,000 had been raised.

With a little help from my friends: Madelyn Harris from Stockport raised funds and awareness at school last year inspired by her Dad, Paul, who is living with MND. She has been selling heart cakes and stayed silent with the support of her friends.

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yourletters If you have something you would like to share with other members of our MND family, we would love to hear from you. Letters, which must include your full address, can be sent to Your letters, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email to editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.

The reality of MND This poem was written by James Peel, shortly before he died from MND and has been shared by his son Philip

“Thank you for sharing my story”

just wanted to say a big thank you for your tremendous support with the article which appeared in the Winter edition of Thumb Print.

Always someone Oh – It can be such a nuisance, and so frustrating too! These things I took for granted, but now find hard to do. Like putting on a shirt, sweater or a tie, I have to call upon my wife no matter how I try. D.I.Y. now a thing of the past Even those simplest of tasksLike raising a hammer to strike a nail, Sounds so simple, yet I fail. Muscles refuse all my demands, My neurones are in sole command! And they in turn are burning out: Motor neurone if you’re in doubt. This disease is reasonably rare And why I need such help and care But the other day, I felt quite grand, Read on and you will understand. At the hospital, the other day I saw a chap in a far worse way With tubes, pipes and drips galore His age? Probably thirty four! Lying in his hospital bed, Doctors, nurses, one shook his head. Me? Well I was exit bound. So when you’re feeling down and blue Remember those worse off than you Accept the things you cannot change And cope with those within your range Written by James Peel

Sharing my personal story was a big step for me. It was probably the first time I had actually opened up about how MND has affected our family, the challenges

You can read Vicky’s story online at www.mndassociation.org If you would like to share your story in Thumb Print please email clare.brennan@mndassociation.org

Book will raise money for Association

N August last year I married my wife Angela who is living with MND and the media covered our wedding because my wife was using speech technology to say her vows. I have written a short story of our lives since her diagnosis and about our wedding day. It is on sale at Amazon and all proceeds from any sales will go to the MND Association. Timothy Gates, Via email

diarydates

we faced and the devastating impact this cruel disease has had on our family life. I still wish we could have done more to help mum and not taken the little time we had with her for granted, but it is for these reasons that I started fundraising and volunteering for the MND Association. One day soon I hope there will be a cure and many families will not have to go through the same experiences we did, having to cope with the heartache of losing a loved one to this cruel disease. Thank you so much for helping me to share my story. I felt a bit anxious after the interview, but received so many lovely and positive messages in response to the feature. I really hope that somehow my story will perhaps help others affected by this cruel disease. Thank you so much for your support and helping me take that big step!

Timothy and Angela Gates pictured on their wedding day

• Regional Conference: 29 April 2018, Castle Green Hotel, Kendal • London Marathon: 22 April 2018

• Edinburgh Marathon: 26-27 May 2018 • Annual Conference and AGM: 14 July 2018 • Prudential RideLondon: 29 July 2018 • Great North Run: 9 September 2018 • The London City Swim: 21 September 2018 • Walk to d’feet MND: All year round

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aboutus

Memories of David Niven

VER the New Year, I was with my newly-married son and my family staying in St Jean, Cap Ferrat, France. It was an opportunity for me to visit the nearby residence of the actor, David Niven, who lived there shortly before he died of MND in 1983. As a founder member in 1979, I remember that because David was an international celebrity, his death gave our Association tremendous publicity and attention around the world, including, much-needed funds and increased awareness. Subsequently, our headquarters in Northampton were named after him. His son, James Niven is a patron of our Association to this day. May I wish you all my regards and best wishes for a successful 2018 which I am sure will bring us all a little closer to finding a cure. Colin deâ€™Ath, Surrey

Colin deâ€™Ath pictured at the home of David Niven, who died from MND in 1983

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.

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 signposting to other organisations. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 802 6262 mndconnect@mndassociation.org Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org

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

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Published on Apr 16, 2018

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Published on Apr 16, 2018

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