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The magazine of the Motor Neurone Disease Association

Thumb Print Summer 2021

Exercise and MND: Your questions answered Full story: pages 4 and 5

Introducing MND Association Membership: Page 10

Fo or MND

GAZE COMPATIBLE

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, part of the

family

Pages 10 and 11 Building a community that’s strong and united Introducing our new MND Membership

Page 15 Serving up a fundraising challenge to remember Jeremy Daubeny on why he’s raising money for the Association

Page 16 Meet our new trustees Association Board welcomes Usman Khan and Jim Marshall

Pages 18 and 19 Are you cool enough? The latest news on #IceFoot92

Pages 34 and 35 Spreading a little love and kindness Branch distributes goodie bags during lockdown

Pages 36 and 37 Thank you! Saying thank you to our amazing fundraisers

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Reg. charity number 294354. Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2021.

Welcome… A huge thank you to all our members and supporters who helped paint their social media channels blue and orange to mark Global MND Awareness Day on 21 June. It was amazing to see the whole MND community come together once more for this special event, linking up with MND associations around the world to raise awareness of this devastating disease. Across the three nations, iconic buildings were lit up by a wave of blue and orange light – an extraordinary and incredibly moving act of solidarity which I know means so much to all those affected by MND, particularly in these difficult and uncertain times. As we begin to emerge from lockdown and restrictions hopefully start to ease, the MND Association will continue to provide care and support to all those living with and affected by MND. As an example, we are developing the support we offer to people who are newly-diagnosed with MND, working with colleagues in care centres and networks to arrange support meetings which people can access online from their own homes. Our incredible volunteers are also continuing their important work in communities across the three nations, supporting people living with MND and carers through regular phone calls, texts and drop-in sessions online. Our award-winning range of information sheets and publications are available online and support from our helpline MND Connect is always just a phone call away – 0808 802 6262. If you are in need of our help, please do not hesitate to get in touch. The MND Association is always here for you.

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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‘Benefits of exercise Despite suggested link between those with genetic risk

XPERTS are urging people not to stop exercising after a new study suggests a link between frequent strenuous exercise and the chance of developing MND in those who have a genetic risk. MND specialist, Professor Ammar Al-Chalabi has said ‘the benefits of exercise still outweigh the risks’ after research conducted by the University of Sheffield suggested a causal relationship between exercise and MND. The study shows that high intensity physical activity could contribute to motor neurone injury – but crucially only in individuals with a predisposing genetic profile. “This study shows that, particularly in people who already have a genetic tendency to MND, exercise can nudge someone a little closer towards developing MND. The risk is small and far smaller than the benefit of exercise or the risk of heart disease or other conditions, but important for what it tells us about how MND might start.”

Scientists at the University of Sheffield believe the pioneering study represents a significant step towards unravelling the link between high levels of physical activity and the development of MND. Ammar explained: “This study shows that, particularly in people who already have a genetic tendency to MND, exercise can nudge someone a little closer towards developing MND. The risk

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is small and far smaller than the benefit of exercise or the risk of heart disease or other conditions, but important for what it tells us about how MND might start.” The Association’s Director of Research Development, Dr Brian Dickie said: “In recent years, understanding of the genetics of MND has advanced, but there has been little progress in identifying the environmental and lifestyle factors that increase the risk of developing the disease. “This is, in part, because the genetic and the environmental studies tend to be carried out in isolation by different research teams, so each is only working with part of the jigsaw. The power of this research from the University of Sheffield comes from bringing these pieces of the puzzle together. “We need more robust research like this to get us to a point where we really understand all the factors involved in MND to help the search for more targeted treatments.” The new research adds to the global research effort to identify which individuals based on their genetics are at risk of MND. In time it is hoped that medical professionals will be able to offer advice to MND patients and their families about the risks so they can make personal decisions about their exercise habits. You can find the latest information about this story on the Association’s Research Blog at mndresearch.blog

Questions and answers Will exercising increase my risk of getting MND? The research suggests that prolonged and frequent strenuous physical activity may be a risk factor in MND, as exercise causes changes in the activity of a number of genes that have previously been linked to the disease. However, these findings do not provide sufficient evidence to clearly state that exercise increases risk in all forms of MND. Indeed, in the vast majority of cases it is unclear if there is any risk or at most, a very subtle risk. The research does provide stronger evidence to suggest that the risk may be higher in people who also carry certain risk genes and who may already be ‘genetically primed’ to developing MND later in life. This view is based on the finding that people who carried an alteration in the C9orf72 gene (the most common inherited MND gene) developed disease symptoms at an earlier age if they also participated in strenuous leisure activity. Based on these findings in C9orf72 MND, the researchers’ theory is that excessive exercise is only potentially detrimental in people who already carry a pattern of risk genes for the disease, but much more research will be needed in order to prove that this is the case.

still outweigh risks’ frequent exercise and MND in

Should I stop exercising? The relationship between exercise and risk of MND is so much more complex than simple ‘cause and effect’. The current evidence doesn’t provide a clear enough picture to make recommendations. However, the researchers stress that for the majority of individuals, the numerous health benefits of a physically active lifestyle will markedly outweigh the risks. What type of exercise puts me most at risk? The study doesn’t include information on the specific types of exercise carried out. What part of exercise causes the increased risk? The research considered ‘high-intensity, frequent, leisure-time exercise’ carried out earlier in life. There is not information on the specific types of exercise carried out. How would I know if I had the gene type that is a risk factor? The C9orf72 gene is usually found in people where there is a clear family history of MND and/or a related condition, frontotemporal dementia (FTD). Can I be genetically tested? Genetic testing is usually performed as part of the diagnostic process only where there is a family history of MND or FTD. If there is no family history then testing is currently not usually carried

out or recommended. If you have questions about genetic testing, you should discuss the options and process with your GP. I have family members with MND. Does that mean I should stop exercising? The researchers do not make any recommendations on exercise. However they do stress that the numerous health benefits of a physically active lifestyle markedly outweigh the risks. What is the increased risk to me if I have the gene type and I exercise? The researchers were not able to calculate the level of increased risk as the people with the C9orf72 gene variant involved in the study had all been diagnosed with MND. What they have reported is that people who had reported a high level of strenuous physical exercise earlier in life were more likely to develop the disease at an earlier age than those who reported a more sedentary lifestyle. There is lots of research into possible links between rugby and football and neurological conditions which seemed to be around heading the ball or head injuries. Is this the same research? The analysis of this study didn’t show any evidence to support a link between head injury/trauma and MND, but

that was not the focus of the study, so further research in that particular area will be needed. I’m training for a marathon to run in memory of my relative who died of MND. Is it safe for me to carry on training? The researchers do not make any recommendations on exercise, but do stress that the numerous health benefits of a physically active lifestyle markedly outweigh the risks – and outside of the c9orf72 inherited form of MND any risk is likely to be low. Is the MND Association going to fund further research around this to find out more? If not, why not? Research in this area has become so much more sophisticated in recent years, thanks not only to the incredible advances in genetic research and gene-hunting technology, but also developments in computing technology and artificial intelligence. The Association has funded a considerable amount of genetic research over the past decade, for example as a key partner in the international Project MinE programme, and we will continue to support innovative studies that aim to combine the genetic pieces of the jigsaw with epidemiology research to build up a clearer picture of the complex and subtle factors that predispose people to developing MND.

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‘My dad died when I was 12. Now I’m finally finding my way’ Matthew Reynolds was only 12 when his father died from MND. In this moving account, Matthew, who helped to care for his father, recalls the impact of his death and how his perspective has changed over the years.

“I

was 12 years old when my dad died from MND. Now at 31, I’ve reached the age he was when he died and I have my own baby son, Haydn. Becoming a dad has added a layer of emotion and perspective which has enabled me to see things differently, looking back through my father’s eyes, rather than a lens of not understanding. Anger has been everpresent through my journey of bereavement, but through this darkness I can finally see a silver lining. “Bereavement stopped me from maturing at the rate maybe others do. Everything was upsetting, and I was constantly reactive, and at times, selfish. Sport, kickboxing and my coach helped to steady me, but I still had a long way to go. As I’ve grown, I’ve developed emotionally and find myself living past the point my dad knew. It sometimes feels strange, but the sense of maturity is welcome. “The path I’ve taken over the last two decades has been challenging – self-destructive at times and fulfilling at others – but driven by fairly self-centred motives. It’s always been about me, how I feel, how hurt I am. Yet, in the last few years, battles with mental health have meant that my perspective has really changed. “After the loss of my dad, life wasn’t easy. I never really understood the word ‘resilience’. I’d hear it thrown around and think to myself, ‘Yeah, just keep going, you’ll be fine,’ but I never actually believed it. Now, when I think of Dad, I’m beginning to grasp what resilience truly means. When he knew his time was limited, you’d never see him complain, lose his smile or fail to reassure you that, ‘It’ll all be okay’. “Until Haydn was born, I’m not sure I realised

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what he was getting at. Then my viewpoint shifted, to appreciate just how selfless his outlook was, in wanting to support all those around him and make them feel they would find a way through. “I’m finding my way now. It’s been a long fight to get to this point, but I was only really fighting with myself. Although it has taken highs and lows to realise it, I can also accept that it’s okay to sometimes be in a place that’s not okay. Finding myself in a position to speak those words out loud is a huge relief and expressing this has helped me reach this point. “It can take many years for young people to work through the trauma of bereavement and find a way to grow around it, but if you can talk things through with people you trust, get counselling or open yourself enough to truly explore what it means, it can help you discover who you really are. “With my partner Kayla, I now have an opportunity to pass on some of my dad’s wisdom to Haydn as he grows. “That’s my silver lining – finally recognising his wisdom for all that it could offer and realising that it’s still with me.” You can hear more from Matthew in our next podcast, which will be released in August. For more information visit www. mndassociation.org/podcast If you would like support, contact our MND Connect helpline 0808 802 6262 mndconnect@mndassociation.org Find bereavement support information at: www. mndassociation.org/ bereavement and details on counselling for children and young people at: www. mndassociation. org/parents

MND Matters: A new way to bring the MND community together

OMETIMES emotional, often humorous, but always honest – that’s what you can expect from the Association’s podcast MND Matters. Launched in March, MND Matters offers a blend of interviews, chat, information and informal advice and is also helping to raise awareness of the Association’s work. Since its launch, the podcast has already covered a wide range of subjects including support for families affected by MND and the work of our amazing volunteers during Volunteers Week. In the coming months, the podcast will cover research, bereavement, mental health and issues in the workplace faced by people living with MND. Speaking when the podcast was first launched, the Association’s Director of External Affairs, Chris James said: “As well as providing a new way for the community to engage with our support and information, it is an opportunity for the wider community to hear the stories of people affected by MND first-hand.” The podcast has already been well-received by members of the MND community. One listener said: “It gives an insight into how things are going to affect families, what sort of things can be done to raise funds and how funds are needed to enable research to be carried out. It also helps people with the disease feel as though they are not alone.” MND Matters is available to download now from your usual podcast platform. To catch up, visit www.mndassociation. org/podcast

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Combinatorial analysis of an ALS patient cohort performed by PrecisionLife. Each circle represents a disease-associated genetic mutation; lines represent mutations that co-occur in the same patients; and colours represent distinct patient subgroups

Understanding AI and its important role in MND research

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HE search for new drugs to help people living with MND is long and challenging, but it is one where we are beginning to see hope for the future emerging on several fronts. New Artificial Intelligence (AI) data analysis techniques and larger, more detailed collections of patient data have been pivotal in these advances.” That’s the view of Dr Steve Gardner, Chief Executive of PrecisionLife Ltd, a British company which has developed new AI analysis tools that give deeper insights into complex diseases. PrecisionLife is working in collaboration with the Association and alongside MND experts Professor Ammar Al-Chalabi and Dr Laura Ferraiuolo. Through its work with teams of researchers at King’s College London and the Sheffield Institute for Translational Neuroscience (SITraN), PrecisionLife has identified 33 new genes associated with MND – a significant advance that opens multiple new avenues for research. The PrecisionLife team tested potential drug candidates for five of the new targets and found three active compounds that showed potential to improve the survival of motor neurones, a key first finding in the hunt for new drugs. Professor Al-Chalabi said: “PrecisionLife was able to look at this genetic data in a completely new way and show possible subtypes of MND that might respond to specific targeted treatments. Once we confirm these subtypes we can look at

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potential drugs that could be taken into clinical trials.” Dr Ferraiuolo added: “The use of AI to identify new targets or unravel disease mechanisms is an extremely fascinating and necessary development. We are excited about this collaboration and our initial results.” These results are very encouraging and may ultimately lead to effective new drugs for at least some people with MND. The next stage will be to build on these early results and move into clinical trials with the goal of finding novel drug treatments that can slow down the progression of MND. People living with MND are playing a leading role in this research. Without their generous donations to the scientific community, new research and progress in finding new treatments would be all but impossible. For more information on further studies investigating patient information and AI in MND, please visit https://precisionlife. com/disease-studies/als-patient-analysis. For copies of a poster showing the MND analysis please contact info@precisionlife. com The Research Development team at the Association is happy to answer any MND research questions, contact us on 01604 611 880 or at research@mndassociation.org You can also visit our website www.mndassociation.org/ research or read our blog posts on https://mndresearch.blog/

With Mission 5000 anything’s possible! M

ISSION 5000 was one of the most successful virtual fundraising events the Association held last year, attracting more than 800 participants who raised a staggering £283,000. Together, our amazing fundraisers walked, cycled, danced and even knitted towards their target of 5,000 miles – one for every person living with MND in the UK. By the end of the challenge, they had smashed the original target, covering more than 57,000 miles. “Even though I found it hard each week, I felt a brilliant sense of achievement. The medal I received is a reminder that we contributed to Mission 5000 and is a good memento of the achievement that I’ve helped other MND Warriors.”

Ian Lev, who is living with MND, was just one of those who took part in Mission 5000 alongside his neighbour Andrew. Together they raised more than £1,000 and covered 50 miles around North Devon – Ian on his mobility scooter and Andrew on his bike. Ian said: “Even though I found it hard each week, I felt a brilliant sense of achievement. The medal I received is a reminder that we contributed to Mission 5000 and is a good memento of the achievement that I’ve helped other MND Warriors.” This year, Mission 5000 is back, and the Association needs you to take on the challenge. Head of Community Fundraising, Denise Davies, said “While we hope that mass participation events will return this year, we know lots of people won’t feel comfortable standing on the start line with thousands of others. We also understand that virtual events are simply more convenient for some of our supporters. “Our Mission 5000 challenge really

Ian Lev who is living with MND, took part in our 2020 Mission 5000 challenge

captured the hearts of our community last year. We were overwhelmed by the number of people who joined in, not least those living with MND who got involved to step, scoot or cycle some miles. The incredible sum the team raised was beyond our wildest dreams and really shows the determination and commitment of our amazing supporters.”

Choose how many miles you’d like to pledge towards our 5,000-mile target and let us know how you’ll be covering the distance. You can run, walk, cycle, scoot, swim; whatever you choose! If you raise more than £100 we’ll send you a 2021 Mission 5000 medal. You can sign up now by visiting www. mndassociation.org/mission5000. www.mndassociation.org

Working together to build a community which is united and strong A S we take the next important steps in the fight against MND we want to work more closely with our members to build a community which is united and strong. To do that we are launching a new membership strategy, unveiled at the Association’s AGM in July. Director of Engagement, Chris Wade explained the aim is to encourage our membersto share their skills and experience to help raise funds and awareness like never before. He said: “Together we are an enormously powerful community fighting for the best possible support for people living with MND, and driving towards that world free from MND. Our vision is to enable all members to have the opportunity to put their unique skills and perspectives together to help shape our work and priorities.” Our members will be invited to embrace a number of new actions including spreading the word by encouraging others to become members, sharing their membership by raising awareness on social media, wearing a pin badge and

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by introducing family and friends. In the coming months, we will be developing ways for members to increasingly collaborate with staff and volunteers to co-design solutions and activities in our work centrally and locally. The variety of experiences and skills our members bring will add enormous value to our work. The launch of the new Membership Strategy also coincides with the launch of a new discretionary fee model meaning members pay the amount that feels right for them. Chris explained: “This new fee model really reflects our new relationship with members. Having a more vested and active role in the Association can be reflected in the value you associate to your membership. We also want to grow our membership base, and do not want affordability to be a barrier to membership. So you can then choose to contribute as little or as much accordingly.” For more information about MND Association Membership or to become a member yourself, visit www.mndassociation. org/membership

Sharing your story is a powerful way to make a difference

S Questions and answers What will it now mean to be a member? We want to give all our members the chance to get more closely involved in the Association’s work, using their skills and experience to raise awareness, help strengthen our voice and encourage others to get involved in the fight against MND. We currently have a family membership, will this stay the same? No, we are simplifying membership with everyone having individual membership. How do I get involved with my local branch and group? When you become a member of the Association, we will connect you with your local branch or group. To find your nearest, just type in your postcode on the website here www.mndassociation.org/find-support I don’t want to receive a pin badge or membership card. Can I opt out? Yes of course. If you prefer not to receive these items, please drop us a line on 01604 611860 or email us at membership@ mndassociation.org to let us know. Will I still receive my quarterly copy of Thumb Print magazine? Yes. If you previously received Thumb Print, you will continue to receive it. If you would like to opt out of receiving Thumb Print, please let us know on 01604 611860 or email us at membership@mndassociation.org I currently receive my membership for free, do I have to pay for membership now? No, if you are currently entitled to free membership that remains the same. We don’t want cost to stop anyone from being a part of our membership community, so please pay whatever you are able to – even if that’s nothing right now. I don’t have time to do the additional activities you’ve mentioned, is this a problem? Not at all. We want membership of the Association to be for everyone so whether you are looking for support and information right now, or would like to do more, everyone is welcome and encouraged to join our community. I would like to talk to someone further about my membership, who can I call or email? If you have any questions about your membership or want to get more involved, we’re here to help. Simply call us on 01604 611860 or email us at membership@mndassociation.org

HARING your story is a really powerful way to support the Association and the work we do. Every day, we work closely with people living with MND and their families, empowering them to share their experiences and raise awareness of what it’s really like to live with MND. By doing so, the Association can shout even louder about the needs of people affected by MND, encourage people to donate and help us to bring about meaningful change. One of the ways you can get involved is by joining our new Speaker’s Network – a group of people affected by MND who are willing to share their stories with community groups such as Rotary Clubs, local branches of the WI or Freemasons. When you agree to give a talk, the Association will support you by providing information about MND, the wider Association and services in your local area. However, the emphasis will be very much on your story and how MND has affected you personally. One of the group’s newest members Miles Pilling, said: “I have Primary Lateral Sclerosis (PLS) and it’s an invisible disability but I’m really keen that people understand what challenges this brings. I also want to give a voice to people living with MND who can’t tell their story or want to spend more time with their family.” Hazel Carter, whose husband Alan died from MND, said: “This initiative appeals to me because I want to tell Alan’s story anyway, helping to raise awareness and funds or garner volunteers. By creating a network of speakers, we will be able to pool ideas and share best practice, which will enable all speakers to do a better job.” To be part of the Speaker’s Network please contact amy.kilpatrick@mndassociation.org You may also choose to share your story with other readers of Thumb Print – the magazine that helps to bring the whole MND community together. We encourage members to share their experiences or any useful hints and tips with our readers either by writing them and sending them in or by speaking with Thumb Print editor, Clare Brennan. In the coming months, we will also be inviting members to become more closely involved in the production of the magazine, helping to develop its look and feel and to ensure it continues to meet the ever changing needs of the wider community. For more information, or to get involved, you can contact Clare directly at clare.brennan@ mndassociation.org or by calling 01604 611877.

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‘I hope I have used this part of my life wisely’ Diana Colville was diagnosed with MND on 24 March 2020 – the day after the ﬁrst lockdown was announced. Here she shares her experience and explains how she is determined to help others.

“I

’M Diana and I live in Harpenden, Hertfordshire with my husband of 46 years, Mike. We have two sons Rob and, Ed who is married to Alex and we have three adorable grandchildren, Daisy aged eight, William aged six, and Ben who is four. “I qualified as a physiotherapist, having trained at The London Hospital in Whitechapel. We married in 1974, six weeks after. For six years I worked as a rotational physiotherapist at Barnet General Hospital, with short breaks for maternity leave when the boys came along. In 1984 I took up a position as physiotherapist at Mapledown Special School in Cricklewood working with children with severe learning disabilities and complex needs. “I retired in 2016 after 32 years of very happy times at the school. I obviously encountered all sorts of neurological conditions over the years, but nothing prepared me for my own diagnosis in March 2020. It seems ironic that after all these years helping our parents, here I am applying for the same equipment, benefits, badges that for years I have been applying

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for on behalf of our pupils. “In August 2018 I fell from a height of about three feet and broke my left wrist badly. I did not lose consciousness or hit my head, but my loss of balance remained a mystery. In January 2019 I fell on the stairs and probably broke ribs. By September 2019 I began to notice that my abilities to get up from the floor were decreasing. My physiotherapy assistant and I would joke about our ages and the fact that we used to be able to stand up with a child in our arms but now we couldn’t get up ourselves. On a holiday in Scotland, I had to give up halfway up a hill while my son and husband continued to the summit. “During Christmas 2019, I stumbled walking across a room full of toys but managed to land on a sofa which broke my fall. In mid-January 2020 I was beginning to lose my balance much more so went to my GP who diagnosed vertigo. I saw four different GPs who all agreed that it was vertigo or labyrinthitis. I kept asking if I should see a neurologist but none of the routine neurological tests provided any clues. MND can manifest itself in different ways and does not appear to run a clear-cut course.

“After a holiday in Antigua during February 2020, where I had two more falls, we returned to see our GP. At this stage I was referred to an ear, nose, throat consultant locally but as Covid-19 began to take over, we decided to pay to see a private consultant in Harpenden. He concurred with all his predecessors, but suggested I consult with a vestibular physiotherapist. She advised that we see a neurologist. “Lockdown came on 23 March 2020 and on the 24th I was diagnosed with MND. On the 25th we tried to celebrate my 68th birthday. We told the boys straight away and then began to make plans. “A community physiotherapist came out within hours and advised us to accept any equipment we were offered. A threewheeled walker was delivered that evening and within days we had a commode, toilet surround, perching seat, hospital bed and shower chair. “The following week we were visited by a physiotherapist from the neurology team, who made referrals to the occupational therapist for seating, speech and language therapist for voice banking, the dietician, Hertfordshire Wheelchair Service, the local hospice and assistive technology. “Our consultation with the occupational therapist was by Zoom and resulted in her applying for a riser recliner chair for me. It has been and remains the best piece of equipment I could have. It was funded by the Association’s South Herts Branch and the Doddie Weir Foundation. In the early days it assisted me to stand up to transfer to my walker, sit upright for eating and now it is a very comfortable place to relax in the evenings, to stretch out, exercise and to just have a rest. “It was also suggested that we contact the Association which offers a very good advisory service for people in our situation. We were assisted with applying for benefits, advised to apply for a blue badge, and advised to register as a patient with MND. I also receive a copy of Thumb Print. “The local branch of the Association was informed, and I receive regular calls from their advisers. Each month we are invited to a Zoom meeting with other patients and carers. There is a separate carers meeting offered to my husband. They also advised on finding a wheelchair accessible vehicle which became more necessary quite suddenly. Being over 65 made us non-eligible for Motability but Herts Mobility recommended us to contact Allied Mobility in Glasgow. We are now the proud owners of a Peugeot Partner wheelchair-accessible vehicle. “My husband brought our wills up-to-date and the Powers of Attorney we had always meant to do were activated. I spent a lot of time on the phone as I didn’t want people to find out about my diagnosis on Facebook. I belong to numerous groups in Harpenden and there were a lot of friends from my past and, of course, family. One very good friend, a former nursing sister, suggested that we tell our grandchildren the truth always. The Association was able to advise my daughter-in-law on suggested books she could read to our grandchildren. So far, they remain intrigued by my change in circumstance and equipment. “We are extremely lucky in that we have a ground floor granny annexe which we had planned to demolish in order to downsize. The same friend suggested we get on with

removing the bath from the annexe, turning the bathroom into a wet room. My husband arranged for a builder friend to come in and start the work immediately. It was completed with only days to spare, when I had to move downstairs a few months ago. Sound advice. “MND is incredibly unpredictable. In my case, my legs were the first affected, then my arms which resulted in a fall at the beginning of November. Feeding has become much more of an issue and I need more and more help. I have found a two handled mug very useful and bendy cutlery very helpful. A plate with raised sides was also useful. Luckily my voice and eating have remained. “MND moves in mysterious ways and none of us are the same, but I have experienced fasciculations, little twitches in my muscles, which come and go day or night, increased reflexes, particularly startle, spasms and cramps, and overall sensitivity of my skin. At one point the balls of my feet were so itchy that the only way I could get relief was to do a twisting action in a standing position on rough carpet. “As my muscles have wasted, my joints have gradually become weaker and displaced. I have found the use of shoulder supports very useful which I attach over my shoulders and pull across my chest and back. Following a period of extreme discomfort, I wore this support for about a week and the pain subsided. It returns from time to time but after a day back in the support it disappears. As much as possible, I try to keep my flexibility and muscle power within the confines of pain and tiredness. It is a fine balance as MND takes over but with the help of a previous colleague we have shown family members how to move me and which bits to stretch. “I recently had an appointment at the Royal Free Hospital to trial a non-invasive ventilation system as I have been diagnosed with mild sleep apnoea. The system can be accessed remotely by the hospital, and they will be able to advise on the best time to start tube feeding as my diaphragm deteriorates. This will be a rig system so that my reduced lung function will not be compromised. “This whole process, although frightening, is extremely interesting to me. MND was something I knew very little about and appears to be quite rare. I am the only patient at our surgery with this diagnosis at the moment and our GP is learning from her experiences with me. “ hope that I have used this part of my life wisely. I have written my memoirs pre-MND for my grandchildren, close friends and family. I assisted in a research project on mindfulness for the Association, assisted with videos and photos for training purposes and, so far, I have raised £19,000 for much-needed MND research by shaving my head. Not a lot I could do in the circumstances but quite an effective fundraiser. “Research into MND continues but has obviously been affected by the pandemic. Awareness has been raised by the two rugby players Doddie Weir and Rob Burrow with their amazing fundraising efforts. Hopefully research will be increased into this cruel and unremitting disease so that it can be eliminated forever.” www.mndassociation.org

An important year for Paul

T’S been a busy year for Paul Jameson, but one filled with amazing memories and ambitious plans for the future. While much of the world ground to a halt during the first lockdown, Paul, who was diagnosed with MND in 2017 became involved with Sound Voice – a ground-breaking project which saw people affected by conditions such as MND come together with world class musicians, researchers and healthcare professionals to explore the importance of ‘voice’. As part of the project, Paul, whose voice has been affected by MND, recorded a dual aria alongside world-renowed baritone Roderick Williams, something Paul described as a ‘wonderful’ experience. He also appeared on BBC Breakfast in January to share his story. Paul explained: “It was a special and moving day for me, something I’ll always remember. I also hope it provided an uplifting moment for other people who are living with MND. I felt total happiness singing with Roddy – I felt totally connected to him and as though he was a part of me. I had my voice back. It was incredibly powerful for both me and my family.” Elsewhere, Paul who sits on the committee of the West Surrey Branch, has launched a new online platform called Aura. life which aims to help people affected by MND and other terminal illnesses manage their end of life affairs.

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He said: “We want to help people have a better end of life experience and open up a dialogue about death and dying. We’re also hoping release a new feature called Aura Memorial to enable those whose loved ones have died to share memories and upload tributes.” Last year, Paul was awarded a British Empire Medal for his charitable services to people living with MND. “It was a special and moving day for me, something I’ll always remember. I also hope it provided an uplifting moment for other people who are living with MND. I felt total happiness singing with Roddy – I felt totally connected to him and as though he was part me. I had my voice back. It was incredibly powerful for both me and family.” He said: “The amount I managed to raise for charity is more of a testament to the generosity of family and friends. The big fundraiser was climbing Mount Kilimanjaro and playing tennis at the top – it caught the imagination and we raised close to £100,000. Other MND fundraisers were a charity tennis match, golf day, bridge day, a Christmas sale, Prudential Ride London 100 cycle and some smaller ones. My thanks to all those people who organised or helped organise these events. I have yet to receive my award, but it is something to look forward to.”

Jeremy’s serving up a fundraising challenge to remember

TEENAGER from Tunbridge Wells is taking part in an epic cycle around Britain this summer to raise funds for the MND Association and to find Britain’s best breakfast. 19-year-old Jeremy Daubeny was inspired to support the Association after his mum Clare died from MND in 2019, just months after his dad Giles died from a brain tumour. While travel restrictions put a stop to the traditional gap year, Jeremy decided to put his time before starting university to good use, touring Britain while raising money for the MND Association and The Brain Tumour Charity at the same time. En route on the Tour de Full English, Jeremy will enjoy traditional cooked breakfasts, rating them for tradition, portion size, the quality of the egg or vegan equivalent and the ambience of the venue. Jeremy said: “I’m not aware of a condition that has a more devastating impact on a person and their family than motor neurone disease. The way it strips away your independence is just heartbreaking. The MND Association does such amazing work researching the disease and helping those who require support. My amazing parents were gradually worn down by both these horrific conditions. “We were dealt a terrible set of cards and I have struggled to come to terms with my grief. But now I feel able to raise awareness of both conditions and raise some money along the way.” “I’m not aware of a condition that has a more devastating impact on a person and their family than motor neurone disease. The way it strips away your independence is just heartbreaking.”

Jeremy’s journey began in Tunbridge Wells in May. Since then, he has travelled along the South Downs towards Brighton, to the Isle of Wight, before turning inland to the New Forest and

Jeremy Daubeny

into Pembrokeshire. As Thumb Print went to press, Jeremy was heading through North Wales and had already raised more than £20,000. He said: “The people I have met along the way have been amazing. I have a tent and intended to camp but a lot of people have offered me places to stay. The kindness of strangers has been incredible. My friends have also been joining me for a leg here and there so I haven’t been completely alone. “While touring Britain, the most British thing to do seemed to be enjoying a

cooked breakfast so that has been a lot of fun and something a bit different. Anything I can do to raise awareness means so much to me.” Follow Jeremy’s Tour de Full English on Twitter @TourdeFullEng or donate by visiting https://uk.virginmoneygiving. com/TourdeFullEnglish If you need support with bereavement, please get in touch. You’ll find a range of information at www.mndassociation.org/ bereavement. Alternatively, call MND Connect on 0808 802 6262. www.mndassociation.org

‘We’re fighting MND together’

HE Association’s annual general meeting is always an important date in our calendar and this year was certainly no exception. Held online for the second time due to Covid restrictions, the AGM gave our community the chance to come together virtually to reflect on what has been a quite momentous year. There is no doubt that the past few months have shown the Association at its very best and the efforts of our whole community – whether they are fundraisers, donors, campaigners or volunteers – have put the Association in a strong position to push forward with our plans for the future and with our vision for a world free from MND. Research will, of course, be central to us achieving that vision and investing in ground-breaking clinical trials will continue to be one of our main priorities in the months and years to come. We are also determined that the Government

should play its part by increasing the amount it invests in MND research to enable us to take advantage of the important advances being made. With that in mind, we will continue to work alongside people living with MND and our partners at MND Scotland and the My Name’5 Doddie Foundation to put pressure on the Government to act through our #United2EndMND campaign. Throughout the past year the strength

of our community has continued to shine through, giving us more opportunities to fundraise, improve awareness and engage with MPs who can help us make a real difference. As members of our Association, we all have a part to play in turning our vision for a world free from MND into a reality, and with the launch of our new Membership Strategy we’re encouraging everybody to get involved. Whether it’s introducing the work of the Association to family and friends, raising awareness on social media, or even sharing your story, you can help us raise funds and awareness like never before. On behalf of the Board of Trustees, thank you for everything you continue to do to support us and we look forward to working alongside you as we continue to fight MND – together. Richard Coleman, Chair of the Board of Trustees

Association’s Board welcomes new trustees

SMAN Khan and Jim Marshall were welcomed to the Association’s Board of Trustees as co-opted trustees in May and were formally introduced to the Association and its members at the AGM earlier this month. Jim was inspired to join the Association to continue the work of his wife, former trustee Janis Parks who sadly died in 2019. Both Janis’s father and uncle died from MND and she devoted much of her life to supporting the Association and people living with MND, through her work as a trustee and as a former Chair of the West London and Middlesex Branch. Jim said: “The Association meant a great deal to Janis and I felt I wanted to do something to carry on her work. Becoming a trustee seemed a perfect way to do that. “Over the years I’ve raised funds for the Association four times by taking part in the Ride London event and I’ve always been impressed by the Association and the work it does to support those

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Usman Khan

Jim Marshall

affected by MND. It’s an honour to be involved and I hope to use my background in finance to support the Association.” Dr Usman Khan was diagnosed with multiple sclerosis (MS) 25 years ago and hopes to use his experience and knowledge of neurological conditions through his work in healthcare and research to further the work of the Association.

He said: “It’s an exciting time for the MND Association and it’s a real privilege to be involved. Great advances are being made in MND research, and as an Association, we want to realise those opportunities. As important, it is about supporting people living with MND to ensure that every minute of every day is as fulfilled as it is possible to be.” Meet more of our trustees: Turn to pages 22 and 23

Sophia, 11, shares her talent with the world

OUNG artist Sophia Towart is using her amazing talent to help raise awareness of MND. 11-year-old Sophia, whose father Alan was diagnosed with MND when she was just six, used lockdown as an opportunity to develop her incredible skills by taking part in online art tutorials with her mum, Dawn.

Sophia, pictured with her mum Dawn and her dad Alan, who is living with MND

She used her new-found skills to develop a collection of artwork, turning her favourites into prints and cards to share with the world.

She explained: “Art relaxes me by letting me splatter all my thoughts and feelings onto canvas. I have decided to sell some of the artwork I have created to help the Association which helps to support families like mine.” In recent months, Sophia’s beautiful artwork has appeared in galleries and online auctions. She recently had her first stall at an exhibition called Prom Art in Grange-over-Sands in May and will be taking part again in July. She keeps fans up to date with her progress through regular updates on social and online. For more information about Sophia and her art, visit her website at www.sophiatowart.co.uk www.mndassociation.org

Freezing fundraisers W

HETHER you’re a fundraiser, a TV presenter, or even a teacher with a class full of pupils you would have found it difficult to escape the #IceFoot92 challenge this summer! Created by former footballer Len Johnrose, who is living with MND, #IceFoot92 has seen fundraisers right across England, Wales and Northern Ireland dipping their feet into freezing cold water for 92 seconds – just like footballers to treat post-match foot injuries. Everyone taking part was then asked to make a donation of £10 to the MND Association and nominate their friends. “This is my way of doing something positive for people with MND, now and into the future. There is some research suggesting a link between sport and MND, so football seemed like the perfect platform to not only raise funds but raise awareness of the disease too.”

The challenge created a real buzz in national and regional press and on social media with many people living with MND and famous names braving the icy water to raise awareness and much-needed funds. Among them was Good Morning Britain presenter and Association patron, Charlotte Hawkins and her colleagues Ben Shepherd and Dr Amir Khan; BBC Breakfast hosts, Louise Minchin, Dan Walker and Sally Nugent; and football stars Dion Dublin, Gary Neville and Steph Houghton MBE. Elsewhere, the challenge captured the hearts of fundraisers in communities across the three nations, including a number of schools, police forces and a whole street in Crosby taking part together. A team of staff from the MND Association, along with Chief Executive Sally Light and new trustee Usman Khan, also joined in the fun. Len said: “This is my way of doing something positive for people with MND, now and into the future. There is some research suggesting a link between sport and MND, so football seemed like the perfect platform to not only raise funds but raise awareness of the disease too.” With the warmer weather now upon us there has never been a better time to take part in an #IceFoot92 challenge of your own to help Len to reach his target of £92,000. Simply film yourself standing in a bucket of ice water, donate £10 by texting MNDLEN to 70085 and nominate your friends. Then share your film on social media using the hashtag #IceFoot92 For more information about how to take part head to our website at www.mndassociation.org/icefoot92

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Len Johnrose

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Coming together to shine a light on MND O

N Monday 21 June, the global MND community came together virtually to mark Global MND Awareness Day. Despite restrictions put in place as a result of the pandemic, the Association was still able to join forces with MND associations around the world to raise awareness of MND and highlight the amazing work being done to drive MND research forward. Using the hashtags #GlobalMNDAwarenessDay and #DrivingMNDResearch, social media turned blue and orange for the day as many of our supporters took to Twitter and Facebook to share their stories. Elsewhere, branches and groups across England, Wales and

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Northern Ireland encouraged local councils to shine a light on MND by batheing iconic local landmarks in blue and orange light. Among them was Smeaton’s Tower in Plymouth which glowed blue and orange throughout the night as well as Stormont, the seat of Government in Northern Ireland, Enniskillen Castle and the iconic Titanic Belfast. During the day, staff at the Association’s offices in Northampton wore orange and blue while young supporter Sophia Towart hosted an online auction of her art to help raise money. For more about Sophia’s story, turn to page 17.

Meet the puppies who are fighting crime – and MND

LEVEN adorable springer spaniel puppies are not just playing a leading a role in the fight against crime but also the fight against MND. The puppies, who will eventually help support the work of West Midlands Police, have all been named after MND heroes, helping to raise awareness of MND on Global MND Awareness Day. Among them is former Assistant Chief Constable of West Midlands Police Chris Johnson who was diagnosed with MND in 2018. Father-of-two Chris, continued to work for the force for almost two years before his retirement and has continued raising funds and awareness of MND ever since. One of the puppies was even named Cheeky in his honour – after the nickname given to him by his colleagues. The others have been named: Doddie – after former rugby union player Doddie Weir, who is living with MND Burrow – after former Leeds Rhinos player Rob Burrows MBE, who is living with MND Darby – after former Liverpool, Notts County and Bradford City footballer Stephen Darby, who is living with MND Len – after former Burnley, Bury and Swansea City football player Len Johnrose, who is living with MND Rimmer – after former soldier Chris Rimmer, who is living with MND and set up the MND Warriors support group Moss – after Emma Moss, who is living with MND and writes the Mummy with MND blog Primrose – after Primrose Hospice

Hawkins – after Good Morning Britain presenter and MND Association patron Charlotte Hawkins, whose father died from MND. Blue – one of the MND Association’s colours

Rollo – after retired sergeant John Rollason who was nicknamed ‘Rollo’. He was diagnosed with MND in 2018 and sadly died in May. Chief Superintendent Lee Wharmby said: “We’re incredibly proud to be able

to name some of our new police dogs after MND heroes. “We felt privileged when Chris approached us with idea – and it was then we set about organising our own surprise by calling one after his nickname. “It was a special moment when he met Cheeky for the first time and we hope all our dogs will go on to be as inspirational as their namesakes.” Amy Kilpatrick, a regional fundraiser for the Association, said: “I had the privilege of meeting the MND Heroes litter when they were just a few days old and immediately became the envy of all my colleagues. “This is a really unusual but perfect way to honour Chris Johnson and others who are living with this brutal disease and a wonderful way to raise awareness – imagine how many people will meet them, ask their names and so learn a little about MND. “We are proud to welcome all these future police dogs to the MND community and look forward to watching their careers develop.” www.mndassociation.org

‘I became a trustee to hon During Volunteers Week in June we celebrated the work of our amazing volunteers who do so much to support people living with MND across England, Wales and Northern Ireland. In this feature, we shine a spotlight on the work of our trustees, a group of volunteers who use their unique skills and experience to help drive the Association’s work forward.

Dr Heather Smith “My partner, Steve, was diagnosed with MND in 2009 and died in 2012. Our experience shaped my desire to get more involved with the Association and I began to volunteer with the North Wiltshire Group, becoming the campaigns contact and then also Vice Chair. I decided I wanted to get more involved with supporting the direction of the Association and applied to become a trustee in 2016. I am now Chair of the Association’s Engagement Committee, which focuses on processes to support staff, volunteering, and communications. I am also a member of the Health Research Advisory Panel, which assesses applications for research funding. I recently became the Board Diversity Champion. “I have volunteered, worked, and researched accessibility and disability for many years, working mainly in the charity sector. I have built relationships with many disability organisations and stakeholders and have become the disability sector champion for countryside and heritage, working with the Cabinet Office. I hold various memberships including Associate Membership of the Chartered Institute of Personnel and Development and the British Standards Institute. “As a trustee, I bring my experience as a carer and the legacy of the difficulties of working with health and social care professionals who had a low level of understanding of MND. One of the reasons I decided to become more involved with the Association was to share this and to build awareness of the need for change so that support for carers improves.

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Dr Heather Smith

“In the year ahead I hope we are able to build on the amazing energy of our fundraisers who have been so adaptable during this difficult year, finding new ways to raise money when the more traditional options haven’t been possible. 2021 will be a tough year financially for us all and we need to support our fundraisers and encourage more people to help us build awareness of MND.”

Jan Warren “I became a trustee to honour the bravery of my darling husband David who died from MND just 131 days after being diagnosed. MND tore through him and he faced it head on. He decided we’d smile and make a memory every day as the alternative was awful. I do still try but it’s so much harder without him. “I’m a former finance director and I also worked with David in our own graphic design and typesetting company. I’m now Vice Chair of the Association and serve on the finance and audit, engagement and governance committees, as well as

our my husband’s bravery’

Jan Warren

Dr Nik Sharma

being a member of the Biomedical Research Advisory Panel (BRAP) which reviews biomedical research grant applications. “I’m passionate about raising awareness of MND and seeing the cure for this devastating disease found within my lifetime. I enjoy asking questions on behalf of the membership and taking part in fundraising. My accountancy background is helpful in several of the committees I’m fortunate to be involved with. I have also given many talks about the Association’s work and my own personal journey. “Every year we strive to fund the best research worldwide. We are proud to be involved in caring for people living with and affected by MND, including children and young people. In the year ahead I hope we will be able to do even more to support them as well as searching for alternative therapies and new ways of living in this age of technology.”

He qualified at the University of Liverpool and completed his general medical training at St James’s University Hospital in Leeds and the National Hospital for Neurology and Neurosurgery. In 2007 he was awarded a PhD by the University of Cambridge for work done with Professor Jean-Claude Baron. His thesis used motor imagery and functional magnetic imaging (fMRI) to explore neuroplasticity and neurodegeneration in large-scale motor networks – funded by Brain Entry Scholarship, UK Stroke Association & Raymond and Beverly Sackler fellowships. His research (thesharmalab.com) brings together these skills to develop an innovative approach to better understand MND. More specifically he combines ‘system-level’ neuroscience with machine learning to develop therapeutics for MND. The group has a specific focus on the gut microbiome and brain imaging.

Dr Nik Sharma Dr Nikhil (Nik) Sharma is a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery.

Meet our new trustees – turn to page 16 www.mndassociation.org

‘I want to show everyone what’s possible, even after being diagnosed with MND’ When Alex Gibson was diagnosed with MND in 2018, he was determined to use his experience to help others. With support from his family and friends he set up his own charity, Challenging MND and is now proud to be working alongside the MND Association, helping to support our Covid Emergency and Quality of Life Grants. Here, Alex shares his incredible story.

LEX Gibson was diagnosed with MND in 2018, shortly before his 40th birthday – devastating news that left him and those closest to him devastated and fearful for the future. Just a few years earlier, life had been so very different. In 2002, Alex had represented Great Britain in the decathlon, he worked as a forensic scientist, nutritionist and personal trainer. He cared deeply about his fitness and played rugby for teams in Barking and Brentwood. Then Alex was diagnosed with MND. He said: “It was an incredibly difficult time but quite ironic really in that I had always taken great care of my health and fitness. To be diagnosed with a disease that would slowly try and take that away from me was a devastating blow. “Over time, I became more and more determined to stay fit and strong, both physically and mentally, and then to do everything possible to support others affected by MND.” In the days and weeks following Alex’s shocking diagnosis, his friends and family were a constant source of strength and support. One of them, Andrew Cappaert, explained how they suggested hosting a rugby match to help raise money towards the cost of Alex’s care. Andrew said: “We were absolutely determined to do something to help and the idea for a rugby match seemed like an obvious one. “But – and, to this day I still find it incredibly moving – Alex was determined that any money raised from the match shouldn’t be spent on him, but rather it should be used to form a charity to support other people affected by MND. That selflessness completely sums up who Alex is. I will never forget that moment.” Shortly afterwards, Alex’s charity Challenging MND was born. From the very beginning, the ethos behind Challenging MND has been clear – to provide people living with MND with the chance to live out their dreams, create wonderful memories and take on some incredible challenges. And, as always, Alex has led from the front, taking on immense challenges of his own to help raise much-needed funds.

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He explained: “The challenges really do keep me going – I am absolutely determined not to let MND beat me. I want to show everyone what’s possible, even after being diagnosed with MND. “Since being diagnosed, I’ve taken part in the Outer Hebrides Cycle and the Essex Way Walk, climbed Ben Nevis and Scafell Pike, taken part in a double marathon walk and lifted one million kilograms in 18 hours. I always make sure I complete my 10,000 steps a day and regularly take between 14,000 and 17,000 steps. I am absolutely on a mission!” This year has also seen Challenging MND join forces with the MND Association for the first time to help improve access to our Covid Emergency and Quality of Life Grants, thanks to a very generous donation of £100,000. Alex said: “The pandemic has been hard for all of us. For anyone living with a terminal condition in these strange circumstances, it has been even harder. But there is help available. If you, like me are living with MND, or you are caring for someone with the condition, please get in touch. We want to help, and these grants are there for you. “We are so proud of our amazing supporters who, in difficult circumstances, have put us in this position where we can pledge such a substantial amount of money. We have helped many people, but we want to help many more and joining forces with the MND Association enables us to do just that.” The Association’s Head of Development, Ian Gardner said: “We are so grateful to Alex, his team and all of those people who have supported him over the last couple of years. This money which they have pledged to the MND Association’s grant funding programme will go directly to people affected by MND through our Quality of Life and COVID Emergency Grants. “To have been able to continue to raise money and take on the amazing challenges they have during lockdown is phenomenal and I can assure all those involved that their efforts will make a real difference to our shared community.” You can find more information about grants by visiting www.mndassociation.org/grants. For more information about Challenging MND visit www.challengingmnd.org

“We have helped many people, but we want to help many more and joining forces with the MND Association enables us to do just that.”

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Helping to make personal care easier I

NFORMATION and advice about how to make personal care easier can be found in a new booklet published by the MND Association. Personal care – for people living with MND and their carers is the result of feedback from our members. It features suggestions about how to tackle everyday tasks such as getting dressed, as well as intimate care issues like going to the toilet or managing periods. There is information about how to get the needs of an individual with MND or their carer assessed; ways to adapt and save energy to do the things you really want to; equipment; and details about who to contact for more support. Diane Aldridge, a social worker at Salford Royal Hospital, explained: “I often say to patients I work with that sometimes ‘just a little bit’ of formal support helps maintain independence and supports the carer too.” One person living with MND told us: “At first I didn’t think I needed help and advice, but I learned that professionals have lots of hints and tips that are really useful.” For more information about personal care or to download the booklet, visit www.mndassociation.org/personalcare. You can also order a printed copy via our MND Connect helpline on 0808 802 6262 or by visiting mndconnect@ mndassociation.org

Do you have some hints and tips to share with readers of Thumb Print? Get in touch by emailing clare.brennan@ mndassociation. org or via Twitter @mndaeditor

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Personal care A short guide for people with motor neurone disease (MND) and their carers.

“At first I didn’t think I needed help and advice, but I learned that professionals have lots of hints and tips that are really useful.”

Care information update Personal care booklet Our new booklet on personal care brings together a range of guidance about personal daily routines when living with MND, including getting washed and dressed, access to the toilet and more. With suggestions on how to adapt and prolong independence, this resource also looks at the benefits of assistive equipment and how to get support when needed. Supporting children and young people close to someone with MND Our guide for professionals can also help parents and guardians. This latest version includes detailed information about the impact of MND, with guidance on how to provide appropriate services and support to children and young people, including young carers. Information sheet 10A – Benefits and entitlements We have revised this sheet to reflect annual changes to Government benefit support and other entitlements.

End of life: a guide for people with motor neurone disease Our award-winning guide on planning ahead has been revised and now includes more on Power of Attorney, coronavirus updates and other updates. This comprehensive and candid guidance can help open difficult conversations. e-Book resources for e-reader Apps We have produced some of our core decision-making information sheets in EPUB format, which can be read on e-reader apps. This allows text to flow according to the size of screen you are using, even if you change the size of the text. Find these resources in the e-Book drop-down option at: www.mndassociation.org/careinfo Coronavirus and immunisation We continue to update our coronavirus information, including a section on immunisation, at: www.mndassociation. org/coronavirus See all of our resources at: www. mndassociation.org/publications or

order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org Our information development is accredited through the PIF Tick scheme. This means our resources are evidenced, user tested and reviewed by experts.

Trusted Information Creator

Would you like to help in 2021? We work alongside people living with MND or Kennedy’s disease, and their carers, to develop and improve our information. We have lots of work planned this year in different formats and would love you to get involved. You can pick and choose which tasks you want to work on and help to make a difference from the comfort of your own home. To find out more, contact: volunteering@mndassociation.org

Meet the MND Professionals: Occupational therapists When someone is diagnosed with MND a large number of professionals are involved in their care. In this series of features, we will help you understand more about the valuable support these professionals provide and how you can get the best from the services they offer.

CCUPATIONAL therapists (OTs) play a crucial role in helping people with MND to adapt and have the best possible quality of life. They provide practical support to help people living with MND continue the activities that matter to them, helping to maintain or increase independence. During an assessment, OTs will consider all of a person’s needs, including physical, cognitive, behavioural, psychological, spiritual, social and environmental. They can also support with practical tasks such as personal care and cooking, as well as activities such as work, hobbies and leisure. OTs can also provide information and support on: • posture and mobility support, such as seating, head and arm supports • a wide range of equipment to make tasks easier • housing adaptations • ways to do things differently so you can keep doing them for as long as possible.

Accessing support OTs can work in a variety of settings including health organisations, social care services, housing, voluntary organisations or as independent practitioners. The NICE Guideline recommends that an OT should be a core member of the MND care team. You can ask any member of your care team to refer you. Further information We have a number of related resources you may find useful: • Living with MND – our main guide to help people to manage daily life with MND. • Making the most of life with MND – focuses on how people can adapt to continue doing the things they want to. • Information sheet 11C – Equipment and wheelchairs • Information sheet 11E – Environmental controls We also have further information for professionals: • Occupational therapy for MND • Information sheet P1 – Head supports • Information sheet P2 – Wheelchairs Download from www.mndassociation.org/publications or contact MND Connect to order printed copies. Call 0808 802 6262 or email mndconnect@mndassociation.org www.mndassociation.org

‘Neil battled MND like he raced on the track – determined and with a smile on his face’

O millions of fans around the world racing driver Neil Cunningham was the The Stig, but to James Beckett, Neil was not only his friend but also his hero. In a career spanning nearly 30 years, Neil thrilled fans in his role as The Stig on the hit BBC show Top Gear as well as in his white-knuckle performances as a stunt man for the James Bond franchise. But in 2011, Neil’s illustrious career was tragically cut short when he was diagnosed with MND. He sadly died four years later. Now James and a number of Neil’s friends and former colleagues are honouring his memory by taking part in an ambitious project to race a car in the world famous 24 Hours of Le Mans. James explained: “Neil’s love of driving at Le Mans led to the creation of a project in 2010, which would see Neil and I drive a GT car to France, contest the world famous 24 Hours of Le Mans, and then drive home again afterwards. Neil’s diagnosis with MND saw the project placed on hold, but now 11 years after its creation we’re back on track. “Neil was not only my friend, he was my hero, and we spent loads of time planning this project. I believe now is the right time to press on with our original plans. “I have assembled a strong group of friends and industry individuals to assist with this project, now known as To Le Mans and Back, and I am happy to say every element of the project

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remains faithful to the original ideas Neil and I chatted about. We are aiming to be on-track next season, and in action at Le Mans in 2023. A project like this takes considerable work, but we are confident of being on the grid.” The To Le Mans and Back team plans to form a partnership with Ferrari and use one of the brand’s 488 GT3 cars for Michelin Le Mans Cup races, before graduating to a more powerful Ferrari 488 GTE specification car for the twice round the clock 24 Hours of Le Mans race. James said: “Ferrari is a car that everyone knows, and a car that people aspire to own. We are very fortunate to have links to Ferrari via their F1 ambassador, Marc Gene, winner of Le Mans in 2009. He has been most helpful and supportive of this project from the very start. We are all inspired by Neil, and want to use this inspiration to do something amazing. Neil battled MND like he raced on track, full of determination, but always with a smile on his face. We want to honour his career, and by doing so, we can improve awareness of MND through this unique race project. That has to be good.” In August, drivers Chris Metcalfe, James Wood, Chris Dymond and Joey Foster are taking part in a kart competition at the Thruxton circuit to raise funds for the Association. It is hoped that by competing in the event against nearly 20 other teams, they will raise a total of £10,000. To donate, visit https://gofund. me/24e3d0e0

Working together to

make a difference Making sure people living with MND, their families and carers are involved in helping to shape the future of the Association’s policy and campaigns work is the aim of a new group formed earlier this year. Members of the Policy and Campaigns Advisory Group (PCAG) met for the first time in February and will work together to ensure the voices of people living with MND continue to be heard. In this feature, group member Shiryn Sayani, explains more about the PCAG’s work and how she came to be involved.

What encouraged you to join the the Policy and Campaigns Advisory Group? I have always been fascinated by campaigning, which is part of my current day job, and being a campaigns volunteer gave me a great grounding in the work that is being done. The PCAG seemed like an excellent opportunity to get involved further, develop ideas with others and create something positive for those facing MND. I know that real creativity can come out of collaborative groups like this, so I’m hoping that being part of it can help make some tangible difference.

What do you think campaigning can achieve for people with MND and their carers? Huge things – campaigning is absolutely essential to ensure the needs of people with MND and carers are addressed by wider society and the right support is given. There are really important ways to make life easier for people with MND, through policy changes, support mechanisms and raising general awareness. The realities of it often fly under the radar. Plus, in the current pandemic, there’s a risk that public and political attention is solely preoccupied with Covid, so a strong campaigning presence is vital to make sure those with MND are always heard.

How did you find the first meeting? Heartening. I was completely struck firstly by the dedication and expertise of other volunteers, who are so committed to finding ways to address issues surrounding MND, and secondly, by the strong sense of community among those working to collaboratively and constructively tackle this rare disease. Considering that I had never even heard of MND until it affected my family, I had no previous understanding of the level of thought and detail that goes into the Association’s work programme and to making the experiences of those with MND heard by the Government. I’m looking forward to more meetings where we can find ways to translate people’s experiences into change on a wide scale.

What are your hopes for the PCAG this year? There are lots of areas that I hope we can make some headway on, including the postcode lottery in terms of the way that MND is managed and diagnosed across the UK; support for carers; the unseen impact of the current pandemic on those already facing MND and their families, and general public awareness of the disease, research around it and the support needed from Government. I’d rather aim to do more than less! If you would like to learn more about the PCAG or get involved, contact us at campaigns@ mndassociation.org

Shiryn Sayani

www.mndassociation.org

Fundraisers unite in memory of Captain Tom F UNDRAISERS from across the MND community took part in the Captain Tom 100 in May to help raise funds and awareness of MND. The event was created in memory of Captain Sir Tom Moore, who died in February after raising millions for NHS charities during the first lockdown, to help raise money for charities impacted by Covid-19.

“As soon as my aunt explained she had been diagnosed with MND, I felt compelled to raise funds for the Association.” Fundraisers were invited to take part by completing 100 of their chosen activity – whether it be baking 100 cakes or running 100 miles. As always, our amazing fundraisers embraced the challenge, having fun and raising muchneeded funds along the way. The Association’s MND Plymouth Group hosted a weekend of fundraising. Community group Clean Our Patch hosted a litter pick bingo challenge, with volunteers urged to collect 100 items of rubbish. Sam Wilson tap danced his way to raising an incredible £1,300, in memory of his friend Bridget who died from MND in 2018. He felt the 100-minute danceathon was a fitting tribute to Bridget, who he described as an ‘avid theatre lover and performer; whose belly laugh would stop people in their tracks, as they couldn’t help but

Clean Our Patch group in action

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Brenda, who is living with MND, completed 100 jigsaw puzzles on her iPad, while other members of MND Plymouth took part in a litter pick, each collecting 100 pieces of rubbish

laugh alongside her.’ Afterwards, Sam said: “My legs felt like jelly at the end of it, but it was worth it to raise money for this great charity.” MND Plymouth Group’s finance officer, Roger Box, set himself the challenge of singing 100 old-time songs and shared his performance on Facebook. Brenda, who is living with MND, got involved by completing 100 jigsaw puzzles on her iPad. She explained: “I normally use 225-piece jigsaws, but for the challenge I used 100 pieces. The only problem I had was keeping the iPad charged!”. Stewart Fletcher, who set himself the challenge of fundraising throughout 2021, used the Captain Tom 100 to boost his fundraising efforts. He said: “As soon as my aunt explained she had been diagnosed with MND, I felt compelled

to raise funds for the Association. When my mum told me how much the MND Association had already done and started providing for my aunt, I decided I wanted to help repay the care shown to her in the form of fundraising.” Having already taken part in a gaming marathon and sponsored head and beard shave, on 30 April Stewart and his wife completed a 100 build Minecraft challenge. They livestreamed the challenge asking viewers to donate and suggest items to build within the popular computer game. To date, the Captain Tom Foundation has raised more than £1 million for good causes across the globe. To find out how you can raise funds to support the Association visit www.mndassociation.org/fundraising

Flexing their fundraising muscle!

UR undraisers have been flexing their muscles by taking part in our Press Up Challenge. Throughout May, our fundraisers pledged to complete 1,000 press ups, sharing their progress on a dedicated Facebook group. Lynne Eldred, treasurer of the Mid Kent Branch is just one of those taking part. She said: “Myself and a few colleagues have weddings to attend this year so we’d been talking about exercises to get in shape. One of my colleagues had been motivating us to do press ups and sit ups each day. Then the advert for the Press Up Challenge popped up on Facebook; it seemed like I was destined to take part!” Lynne’s inspiration is her husband Paul, who was diagnosed with MND on Christmas Eve in 2012 and died two years later. Their children were just seven and 12 years old when he was diagnosed. Lynne said: “We knew nothing about MND apart from the fact that Stephen Hawking had it. For a long time we were in denial about how a very fit 50-year-old, who did not drink or smoke and who ran 70 miles a week, could be suffering from a terminal illness. “Some people have a bucket list and are incredibly positive about fighting on. Paul suffered with bulbar onset MND which quickly affected speech and communication. It left him with constant drooling of saliva and difficulty with eating and swallowing; our nights were constantly disturbed with very little sleep. At that time there was no-one in the media highlighting MND like Doddie Weir and Rob Burrow today. Had there been, maybe Paul would have wanted to put up a better fight, encouraged and motivated by those role models. But MND took away all the things he enjoyed; running, cycling and walking. Paul just wanted it to end. “The best thing about the challenge is to see all the wonderful posts from everyone around the country who has become involved, to see the videos and the stories behind why

people are doing this, and to realise there are so many people who are supporting the cause and raising awareness. It makes it feel like we are all part of one large family – the MND family.” Chris Bull joined the Challenge with his wife Kathryn, in memory of his sister Gill who had MND. He said: “Gill was the kindest and most generous person you could meet. She was a prolific knitter, cake baker and gardener. Gill’s fight against MND was always on her own terms. Once Gill was diagnosed with MND, she didn’t want to know anything about was going to come in the future and she carried on working for a year. Once she stopped, I got advice from the Association on benefits, so she could live in her own home for as long as possible. She went into a nursing home in December 2019.” Claire Murphy took part in the challenge after seeing it advertised on Facebook and raised an amazing £610. She took part in memory of her dad, who was diagnosed with MND in 2004 and lived with the disease for 11 years. Claire said: “I hope the money I’ve managed to raise will give newly-diagnosed patients and their families the information, care and support that they will need emotionally and physically following this devastating diagnosis, and help fund research into a cure for this disease to give people hope.” Michelle Tulie took part in memory of her mum, Elaine, who died four years ago. She said: “Our mum was a fighter and fought bravely until the end. She was out-going, hardworking and the most caring person I will ever know. Mum was diagnosed a couple of days before Christmas 2016 and died in July 2017. Within those seven months she lost her independence and dignity. MND is such a horrible and heartbreaking disease. I am happy to be a part of raising awareness and much-needed funds for this terrible disease.” Although the Challenge was a pilot, it was a huge success. More than 850 people registered to join and together they raised an incredible £45,818. www.mndassociation.org

Taking the next steps in

Fundraisers from the Dorset and New Forest Branch are among those taking part in Walk to D’Feet MND events

S we begin to emerge from lockdown and restrictions begin to lift, supporters and volunteers will be hosting Walk to d’feet MND events this summer. Across Wales and the North West of England, branches and groups are joining together to organise a walk, inviting people to walk part of the Offa’s Dyke Path on 26 September. The 177-mile path, which follows the Wales/England border, was chosen not just for its location but also its outstanding beauty. Richard Shackelford, the Association’s Regional Fundraiser for Wales, Northern Ireland and Merseyside, said: “It’s been an extremely difficult year for our branches and groups. They rely on fundraising events, like this one, to raise money to enable them to support local families affected by MND. We hope the event will raise more than £1,000 which will be used to fund, among other things, grants to improve quality of life for people living with MND.” Volunteers in Essex are also busy planning Walk to d’feet MND events. Sandy Lambert, from the South Essex branch has organised a walk on Southend seafront for the past 15 years. The annual walk is the biggest fundraising event in the branch calendar, with up to 400 walkers joining the event. To date, the event has raised more than £220,000 to support local people affected by MND. This year’s walk will take place virtually and fundraisers are being invited to take part by walking locally. Another popular seaside Walk to d’feet is the annual event organised by Association visitor Anne Lipscomb, who joined the Colchester and North East Essex Group after losing her

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husband John to MND. Anne said: “In my role as an Association visitor I see first-hand the difference our support makes. It’s so important that we can get out there fundraising safely again, to ensure we can continue to provide that support for families affected by MND. We’re a small group, but we’re very active. Last year almost everything we planned had to be called off. Our Walk to d’feet is quite literally the first step back to normality for us, we’re so looking forward to it.” The newly-formed group Money 4 MND is looking forward to hosting its first Walk to d’feet MND event in the autumn, along with the Northamptonshire Branch. The fundraising group, which came together just before lockdown, have already hosted a number of virtual events. “It’s been an extremely difficult year for our branches and groups. They rely on fundraising events, like this one, to raise money to enable them to support local families affected by MND.”

Group member Caroline Lee said: “We’ve hosted a couple of virtual bingo events which have been brilliant and just what people needed when they were stuck at home. But as we head out of lockdown and Covid restrictions are relaxed, it feels like a great time to start getting some in- person fundraisers in the diary! A walk with friends and family is something that so many of us have missed over the last few months. We’re really looking forward to getting back out walking together and raising money as we go. Fundraising walks are also easier to make Covid-safe than other events because they’re outside in

the fight against MND

Take part in a walk near you

the fresh air with plenty of space to social distance.” Anyone can organise their own Walk to d’feet MND event and take positive steps in the fight against MND. Register to receive your fundraising pack by visiting www.mndassociation. org/walk. You also find more details regarding walks which are taking place in your local area.

LOCATION

DATE/ORGANISER

Virtual event, walk wherever you choose

25-27 July South West Wales Branch

Frinton seafront, Essex

22 August Colchester and North East Essex Group

Brighton, Sussex

29 August Joint Sussex branches

Bushy Park, London

5 September West London & Middlesex Branch

Crossing Bridges TBC Together, Central London Joint London branches walk Emberton Park, Buckinghamshire

12 September Milton Keynes Branch

Grafham Water, Cambridgeshire

26 September Cambridgeshire Branch

Offa’s Dyke, Wales/ England border

26 September Joint branch event

Blenheim Palace, Oxfordshire

2 October Oxfordshire Branch

Haldon Forest Park, Devon

3 October Exeter and East Devon Branch

Shuttleworth, Bedfordshire

31 October Bedfordshire Group

Wycombe Rye, Buckinghamshire

TBC Chiltern Branch

www.mndassociation.org

Volunteers share bags F

OR people living with MND, the past year has been particularly difficult with many forced to endure long periods of time away from their loved ones. Knowing that many of their members would be keenly missing their family and friends, volunteers from the Leicestershire and Rutland Branch of the Association decided to step in, spreading some love and kindness with goodie bags delivered to their homes from a safe distance. Volunteer Barbara Strevens explained: “We wanted our members to know they hadn’t been forgotten, that we still cared and were there for them, even though we could no longer meet face-to-face. “Using social media, we got in touch with a number of local businesses who were only too happy to help. A local restaurant donated the bags and we filled them with toiletries and treats. Our branch volunteers then helped to deliver them to around 100 people living with MND across the area.” The first goodie bags were sent out in August with two more deliveries being made at Christmas and at Easter. During the Christmas period, gifts were also distributed to those who had been bereaved.

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Barbara said: “At Christmas, we included biscuits, chutneys and jams and also some hyacinth bulbs. “At Easter, pupils, parents and staff from Leicester Grammar School very kindly donated 425 Easter eggs which were packaged up with bows and daffodils and sent out to people living with MND. We took 200 of them to our local hospice LOROS in Leicester, which were distributed to patients and people living with MND who regularly use the services.” Special packages were also created for 16 children in the community whose families are affected by MND. Barbara said: “Each of the packages had a little label on them which read, ‘Because we care’ and we were so moved when one child said, ‘I didn’t know they cared so much.’ “It really has been a fantastic community effort and we are so grateful to everyone who has lent us their support.” Among those to receive a bag was David Needham and his family, pictured below. David said: “The support of our local MND Association branch has been fantastic and seeing the smiles on our children’s faces when Barbara visited was invaluable. Be it the little things, like the goodie bags, or more pressing matters, Kate and I have always felt supported.”

of love and kindness

Volunteers from the Leicestershire and Rutland Branch helped distribute goodie bags to people living with and affected by MND

The hard work of the branch and its volunteers also attracted attention from the Lord-Lieutenant of Leicestershire, Mike Kapur OBE who got in touch to congratulate them on their efforts. The letter said: ‘The Lord-Lieutenant has been made aware of the wonderful work your group has been doing during the coronavirus pandemic to help the local community. He has asked that I that forward to you this card with his personal thanks and appreciation for being such an example to others.’ Barbara said that in the months to come the goodie bag

deliveries are likely to continue with deliveries already planned for August and Christmas. In between, the branch is hoping to host an afternoon tea picnic and a summer social. To find out more about the Leicestershire and Rutland Branch you can connect online by searching for @LeicestershireMND on Facebook and @MNDA_Leics Did you receive a goodie bag? We’d love to hear how much it meant to you. Get in touch with Thumb Print editor Clare Brennan at clare.brennan@mndassociation.org

hope A gift in your Will could give

of a world free from MND

Please help us create a world free from MND for future generations with a gift in your Will. To request an information pack please call 01604 611898 or email legacies@mndassociation.org or visit www.mndassociation.org/wills

www.mndassociation.org

Thank you

Share your pictures at www.facebook.com/mndassociation If you are sending in photographs to feature on these pages please ensure you have full permission to use the images. The MND Association asks all supporters to adhere to the latest government guidelines in their area when taking part in Association-related activities. Any photos used have been provided to us by the supporters concerned in the activity.

£4,000

£335 In memory of our Hen Nain: Kyle, aged 10, and his sister Ava, aged eight, raised £355 by walking 50 miles during lockdown in memory of their Hen Nain (great grandmother) Elizabeth. They signed up on the Association’s website and were interested to learn how the money they raised would help to make a difference to people affected by MND. Their mum Hannah said: “Lockdown was very difficult for Kyle and Ava, this gave them something positive to focus on. We are lucky to live in an area that has lots of beautiful walks and lots of wildlife to spot. During their walks they have played games and learnt new things.”

£2,000

www.mndassociation.org

Fighting back against MND: Andrew Bilverstone was diagnosed with Bulbar Onset MND in May 2020, aged just 55. He decided to share his diagnosis with friends, family and colleagues by setting up a blog on Facebook. For the past year he’s been regularly posting diary updates, not only about his progress, but also his RAF career and work setting up professional firework displays. Alongside raising awareness through the blog, he also set up a Facebook fundraising page which generated more than £4,000 thanks to the generosity of his followers. Andrew hopes the money raised will fund research into better understanding MND and ultimately bring us closer to finding a cure.

Going the extra mile: Mitch Wilson and his daughter Michelle clocked up 1,899,598 steps in just seven weeks to raise more than £2,000. 69-year-old Mitch, who is living with MND, originally set the target at 777,777 steps as part of the 7 in 7 Challenge, but the pair far exceeded their expectations. Mitch said: “I was walking ten miles a day and my daughter Michelle helped me. It was quite tiring, but I enjoyed it. I was burning up to 2,500 calories a day. I’m very pleased with how much I’ve raised.”

£2,789

Showing her support: Samantha and Andrew wanted to do something to show their support for Samantha’s cousin Shane, who was diagnosed with MND in September 2018. They were joined by friends and family to walk from Oulton Community Sports Club to Shane’s home in Huddersfield to raise funds and awareness of MND. The arduous 26-mile route included a stretch alongside the canal and some steep hills, but the team completed the challenge and raised an awesome £7,778. Shane was delighted to meet the team and join the finish line celebrations.

£7,778

An inspirational decade: Mental health lecturer Dr Tony Gill has dedicated a decade of challenges to the memory of his mentor Keith Cooper who died from MND in 2009. “Without his inspiration I would not be who I am today,” said Tony. From organising football matches to cycling across the UK, he’s raised more than £2,789. His latest challenge was to walk 198 miles in seven days from Lancaster to Coventry, which is good training for the Great North Run which he will be running alongside his daughter Rebecca in September.

Every mile matters: Ten-year-old cousins Annabel and Layla raised £6,558 by running two miles every day for a month in honour of their uncle, Mark Lythgoe. Mark, 39, who was diagnosed with MND in 2019, said: “I’m so proud of both of them. If the money raised means the MND Association can help other people going through what I am, then it would all be worthwhile. We need support and money needs to be raised to push towards a cure for this terrible disease.”

£6,558

£1,637 A helping hand: 36-year-old Kiri Francis joined our 7 in 7 Challenge and set herself the task of walking 7k each day for seven weeks in honour of her stepdad David, who is living with MND. Kiri, who raised an amazing £1,637 said: “Over the last two years, the MND Association has provided David with support which has really made a big difference to his quality of life. David is really proud of my efforts to continue to raise awareness and funds for this charity. My hope is that the funds I raise will help the Association continue to provide the invaluable support, advice and equipment to those who need it.”

A cracking challenge!: Since being diagnosed with MND in 2019, Andy Laird and his family and friends have raised more than £36,000 for the Association. His recent challenge was one of the more unusual – an egg and spoon race in his mobility scooter with his friend Trevor! He also completed 26 mini marathons – that’s 26 days of completing 26 steps with his wheelie walker.

£36,000

‘For Nanny’: 22-year-old Chloe Hanna raised £890 by taking on the Association’s Step Forward Challenge in memory of her Nanny. The student from Country Antrim clocked up 300,000 steps in April during the last four weeks of Northern Ireland’s lockdown. Chloe, who was accompanied by her dog Cookie, said: “I was feeling down and missing my Nanny when I saw the advertisement for the Step Forward Challenge so I decided to step up to the challenge in memory of my Nanny, who died from MND in October 2020. Family and friends have constantly reminded me that my Nanny would have been proud of me for taking on the challenge and raising funds for the Association and I hope she would be too. During one of my walks I spotted a robin several times, almost as if it was following us! That day it definitely felt as though she was supporting me, and was with me throughout challenge.”

£22,000

£890

United against MND: Ellie and her friend Emelia walked a full marathon distance from Ellie’s home in Ugley Green to Cambridge in honour of Ellie’s mum Gilly who is living with MND. Thanks to the generosity of family, friends and the local community they raised an incredible £22,000 to help fund MND research. The pair have been overwhelmed with the response, including a message of support from Lucy Hawking, daughter of the Association’s late patron, Professor Stephen Hawking. Lucy said: “I’m both impressed and moved by Ellie and Emelia’s dedication to raising money to tackle MND. I wish them all the best on the day and salute them for their commitment to help Ellie’s mum and other people with this condition.”

‘Mum is my inspiration’: Melanie Bright and her boyfriend Tom raised £1,762 by walking 300,000 steps each in four weeks. The pair took on the challenge in honour of Melanie’s mum who is living with MND. Melanie said: “Walking has kept so many of us sane during lockdown. We forget how lucky we are to be able to move and walk every day. Limited movement aside, MND has not stopped mum laughing and dancing yet. She is an inspiration, and I did this for her.”

£1,762

www.mndassociation.org

Members letters If you have something you would like to share with other members of the MND community, we would love to hear from you. Letters, which must include your full address, can be sent via email to editor@mndassociation.org or posted to Your letters, Thumb Print, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Please note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

‘We’re helping the Association to achieve its vision of a world free from MND’

“A

S a family, we raised money throughout the month of June .for the MND Association, in memory of Rich’s mum Lilian who died of the disease in 2013. “Dad Rich cycled 600 miles, Mum Helen swam 10 miles and Meg and Joe held a bake sale on 20 June. This will also support the volunteering section of Joe’s Bronze Duke of Edinburgh award and Megan’s Silver Duke of Edinburgh award. “The work of the Association is very important to us, as is all the research that goes into this devastating disease. We are hoping to raise more than £600 to support the Association in its vision of a world free from MND.” Helen Johnson

The Johnson family who took part in a number of challenges to support the Association during June

‘New book shares my experiences of MND’ D’

“T

HANK you for publishing my poem Spoon-feeding in n the last edition of Thumb Print; it was great to see it in print and, more importantly, I hope members of the Association related to it. n “I thought I’d let you know about something else I’ve written that features MND. Just published as an e-book, Right to the End is a brief memoir about my politically active parents. They were present at Enoch Powell’s Rivers of Blood speech and at the Grand Hotel shortly before the Brighton bombing. As well as reflecting on these events, I cover the loss of my mother to MND MND. O One th theme iis h how the absence of discussion in our household – originally to avoid political discord – meant we were ill-equipped to deal with my mother’s diagnosis. There’s more information on my website https://www.allisonhill.com/books-to-buy/ as well as links to Amazon for those who would like to buy it. Allison Hill

Join in the conversation Our online Forum is an ideal resource for anyone living with or affected by MND. Anyone can access the forum to read content, but you must register if you’d like to ask a question or comment.

https://forum.mndassociation.org 38

www.mndassociation.org

About us

Five minutes with Chris Evans, MP for Islwyn and Vice Chair of the All-Party Parliamentary Group on motor neurone disease What made you get involved in the APPG on MND? I first joined the APPG as an officer in 2014. I had seen the crucial work the Group does to ensure the issues affecting the MND community are raised in Parliament and was eager to get involved and show my support. At our most recent AGM in February, I was re-elected as Vice Chair of the Group. As a group, we have carried out multiple inquiries including on benefits, communication equipment and palliative care for people with MND. I am really pleased to work alongside colleagues from different political parties to promote access to high quality services for people living with this condition.

How have you helped to raise awareness of MND? Raising awareness of MND is really important to me both inside and outside Parliament. In 2014, I took part in the hugely successful ice-bucket challenge having been nominated by the MND Association. I was happy to get drenched in freezing cold water (in my suit!) to help raise awareness of MND and the brilliant work the Association does. In 2018, I put my running shoes and orange vest on and ran the London Marathon in aid of the Association. Thanks to generous donations from family, friends and the public, I was able to raise £1,330.

What are your current priorities? I am supporting the United to End MND campaign which is seeking a £50 million investment from the Government over five years for targeted MND research. I know that finding effective treatments

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. https://forum. mndassociation.org

mndassociation mndassoc mndassoc and, ultimately, a cure is so important to the six people a day who are diagnosed with this cruel illness. An e-petition which was launched as part of the campaign reached 100,000 signatures within a few weeks, demonstrating just how much public support there is for investment into MND research. As a member of the Petitions Committee – which is set up by the House of Commons to consider e-petitions – I hope to take this petition forward for a debate in Parliament.

Is there anything we should look out for in the future? I am currently writing a book on Don Revie, the former Leeds United and England manager. Don was diagnosed with MND in 1987 and died two years later, aged 61. He was a complex and controversial figure in football, and his reputation was tarnished after he walked out on the England job. MND and his untimely death robbed him of the opportunity to rebuild his reputation as one of the greats of the game. The book is based on exclusive interviews, and I hope to publish it later this year.

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 611860 or email membership@ mndassociation.org If you would prefer to receive your copy of Thumb Print under plain cover please let our membership team know. Call 01604 611860 or email membership@ mndassociation.org

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

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Get in touch to arrange a free home visit with a member of our team

Increase your rate of communication with powerful prediction tools and Chat History Quickly speak pre-stored phrases for common situations Prepare for conversations in advance Switch between conversations with ease and save messages for later Capture and recall personal phrases in your own voice with our new message banking tools Use accessible apps to keep in touch with friends and family, or connect on social media Control devices around your home using radio and infrared technology Works with touch, switch, pointer or eye gaze access

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