The magazine of the Motor Neurone Disease Association
Six pages of research inside this edition
Winter 2018
The global fight to end MND Record numbers of delegates attend our International Research Symposium
For mND
GAZE COMPATIBLE
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, part of the
family
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International Research Symposium Read some of the highlights from our 28th International Symposium on ALS/MND
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Making the most of life with MND Three people living with MND share how they continue to enjoy their interests
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“Fundraising is a big step towards me trying to deal with the loss of my Mum.” Vicky talks about her experience as a fundraiser and young carer
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Revisiting lithium trials highlights importance of precision medicine Dr Ruben van Eijk comments on the findings of the study
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“I believe we will find a treatment in my lifetime.” Prof Ammar Al-Chalabi answers the question ‘are we really making progress?’
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Helping people with MND ‘keep’ their voice Our first voice banking volunteer, Kim explains how she helps people bank their voice
welcome… I have just returned from our 28th International Research Symposium on MND in Boston where we saw the largest number of delegates, with 1,300 of the world’s leading MND researchers and clinicians attending our annual event. This continued growth in the number of delegates is a strong reflection of the increase and range of research taking place around the world, to understand the causes of MND and find new treatments (see page 6 and 7). This is extremely heartening and, through this international collaboration, we will be able to continue to accelerate progress. Much of the growth in research is only made possible due to the support of MND communities globally. Currently the MND Association is funding 88 research projects thanks to our own MND community, and we know the majority of you have been personally touched by the disease. Thank you for your fundraising efforts. Closer to home, sadly we know people with MND are still facing unacceptable challenges accessing benefits like Employment and Support Allowance (ESA) and Personal Independence Payment (PIP). At our recent parliamentary reception, the All Party Parliamentary
ON THE COVER This image, by research scientist Ricarda Menke with Prof Martin Turner from the University of Oxford, shows a modified image of brain sliced vertically through the motor regions. There are colour-coded blobs showing the relative diffusion of water through the nerve pathways of the brain. The main descending motor tracts that are so damaged in MND are marked in yellow.
Group on MND, launched its report on PIP. We will continue to actively campaign on this issue to ensure people with MND are getting access to the benefits they are entitled to and do not have to endure pointless reassessments (see page 26 and 27). For some of us, the New Year is the perfect time for setting new challenges. If, like me, you want to make a positive difference in 2018, why not take a look at the events diary enclosed in this edition of
Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, PO Box 246, Northampton NN1 2PR. Reg. charity number 294354. Editorial and advertising enquiries: Mel Barry, 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.
Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply that those products or services will be provided, funded or available via the Association.
Thumb Print. Last year I joined #TeamMND and cycled from London to Paris with my partner on our tandem! It was definitely a challenge, but also one of my highlights from 2017. Thank you for everything you do to support our vital work and I wish you a very happy and peaceful New Year.
Sally Light Chief Executive
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Credit Suisse UK charity partnership smashes ÂŁ600,000 target
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UR special year-long partnership with Credit Suisse has now come to an end and we are very proud of everyone involved. The target of ÂŁ600,000 was smashed, thanks to the creative fundraising of Credit Suisse employees. Since our update in the last edition of Thumb Print, Credit Suisse has held a special dinner and auction hosted by renowned chef Michel Roux Jr and a carol concert where Association patrons and supporters; Eddie Redmayne, Charlotte Hawkins, Deborah Meaden and David Gower gave seasonal readings. The support from Credit Suisse has provided funding for three programmes. Part of the money has been invested in
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our MND Care Centre Network to enable more people with MND to have access to a specialist centre, with some of the funds raised contributing to the opening of our 21st MND Care Centre in Norfolk. It has also allowed us to launch our two year pilot project to help people with MND to bank their voice by providing funding for the equipment. Finally there has been investment in ProjectMinE, to help understand the genetic causes of MND. We would like to thank Credit Suisse staff for their dedication and commitment. The money they have raised will make a big difference to the support we can provide people living with MND.
£1m of benefits identified for people affected by MND
Tennis match in the clouds raises £54,000
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aul Jameson, 57, was diagnosed with MND earlier in the year, but that didn’t stop him breaking (unofficially at time of going to print) a Guinness World Record for the highest ever altitude game of tennis. Following his epic climb to the top of Mount Kilimanjaro, Paul said: “I have been a member of my local tennis club for over 20 years. Only a few days after I was diagnosed, very good friends from the club came over and we discussed bucket lists and what I wanted to do.
“Not happy with just a Mount Kilimanjaro climb, we wanted to do something even better and have a tennis match at the summit. People thought we were mad, and we probably are, but life is too short and I’ve always enjoyed challenges. Our aim was to raise £50,000 for MND research, as I’d like other people in the future to benefit from the money we’ve raised.” To find out more about Paul’s trek and Guinness World Record attempt visit www.kilimasters.com
“Share my experience with others.”
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elevision editor turned writer/director Sarah Gray, has worked on hundreds of programmes and written and directed her own short films. In October 2015 Sarah received a devastating diagnosis of MND. Sarah describes how MND has affected her and how she is determined to continue to write. Sarah said: “MND has affected my life in every way imaginable. I was only 43 when I was diagnosed and it was devastating to deal with a significantly reduced life span, as well as coping with the gradual onset of disability. Loss of independence and control, identity and intimacy are tough. Relationships change and a more intense level of trust develops. Everything is difficult and takes a lot planning – nipping around is a thing of the past. “Previously I had studied for a Masters degree in literature, and I did a Creative Writing Diploma. My writing developed from there until I had enough for a collection. I have now published two collections – Surface Tension and Half Life.
Half Life deals with the experience of being between life and death which reflects my current outlook. It is being used by my palliative care specialist as a training tool. My latest collection, Urban Creatures is due to be published in Spring 2018. I now have to use speech recognition software, which is amazing and frustrating at the same time – it’s not always accurate and can be slow. In terms of subject matter, I have written a lot about what it means to be outside of the norm and how dealing with something sets you apart from others. As well as the physical dimension it is a very lonely place and I wanted to share that experience through my writing. “During the process of my diagnosis the MND Association was there at the end of a telephone to offer support. I recently organised a story-telling event to raise money and awareness for the MND Association and as well as being a really fun evening I was happy to give something back.”
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ince its launch earlier this year, our benefits advice service has now identified £1million worth of benefits people affected by MND were eligible to claim. John GilliesWilkes, Regional Delivery Manager at the MND Association said: “We knew this service had the potential to make a big difference to people, and thanks to the Ice Bucket Challenge, we were able to fund it. In just eight months we have so far identified over £1 million of benefits. “Many families do not know what benefits they are entitled to and how to claim them. Our benefits advice service guides them through the system and ensures they are claiming everything they are entitled to. With the service’s specialist Benefits Advice Service knowledge, An introduction for MND Association staff, volunteers, care centres and health and social care professionals claimants can receive benefits far quicker. Indeed, many people living with MND don’t realise that a Personal Independence Payment claim that usually takes between six weeks to six months, can be reduced to just six days if the claim is made under ‘special rules’. Knowledge like this is invaluable to families affected by MND.” Welfare benefits advice
England and Wales: 0808 801 0620 Northern Ireland: 0808 802 0020 www.mndassociation.org/benefitsadvice
Benefits advice service (free to call)
England and Wales
0808 801 0620 Northern Ireland
0808 802 0020 www.mndassociation.org
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The world’s leading MND researchers under one roof Over 100 talks, 400 posters, and 1,300 delegates at this year’s International Symposium on ALS/MND in Boston.
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UR annual Symposium is not only a chance for researchers all around the world to learn about new findings and techniques developed by different labs to improve their own studies. It is also an opportunity to spark conversations about new collaborations, which can eventually lead to finding new treatments. A typical day at the Symposium starts with a large number of talks that are intertwined with coffee and lunch breaks, which are a great opportunity for researchers to network. In the evening, everyone meets in a large room filled with research posters to complement the findings presented during the day. Poster presenters are available at their own posters, to explain the rationale and process of their study in detail to anyone who is interested. This is a great place for delegates to suggest (and learn) improvements of their study design, follow-up studies, or discuss new collaborations. To make sure that as much of MND research as possible is covered, the talks are split into sessions, and posters into themes. This year, we had 11 sets of sessions; most of these included two, or sometimes three, parallel sessions, with around five talks in each. The sessions covered topics such as biomedical research (eg RNA transport, TDP-43, or Neuroinflammation), causes of MND (eg Genetics, or Epidemiology), diagnosis and
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From new genes and development of therapies, to ways to diagnose and track the disease and innovative methods to manage symptoms, the Symposium highlighted the progress made in 2017.
Masitinib, a drug attempting to reduce inflammation in motor neurones, was found to delay disease progression and slow down progression of symptoms. While a further clinical trial is now due to provide more data, masitinib is currently under investigation by the European Medicines Agency (EMA) in order for it to be licensed as an MND treatment in Europe. Another drug, tirasemtiv, recently failed its primary objective to improve breathing function and was shown not to be well tolerated. Its successor (called CK-2127107), working on a similar principle as tirasemtiv, already showed improved tolerability and will be tested for beneficial effects in future trials. Ibudilast has recently finished Phase 1/2 clinical trial in which the drug was shown to be safe and welltolerated. Preliminary analyses also showed that the ALSFRS score (measuring functional change) didn’t decline in some participants, but these results now need to be replicated in further bigger trials to determine beneficial effects of ibudilast.
Treatments While there are currently many clinical trials looking at new treatments for MND, lots of them are in the early stages of investigation. Aside from learning new lessons on how to improve design of clinical trials, we also heard results on drugs that have recently sparked a lot of interest.
New genes Finding new genes that are associated with the development of MND is no easy task. Since the discovery of the SOD1 gene in 1993, the average time taken to announce a new gene discovery has been about one per year (although the process behind finding a new gene takes much
prognosis (biomarkers, or technology and ALS), developing treatments (eg clinical trials, or therapeutic strategies), and management of symptoms (eg cognitive change, and respiratory management). The posters were split into 14 themes, with two additional themes that presented research that is still ongoing, but showing promising signs.
longer). At this year’s Symposium, three new genes associated with MND were presented, and updates on these will be provided soon. Symptom management Prof Chris McDermott announced the launch of the HeadUp collar, an innovative neck support with a lot of technology embedded in it. The collar consists of a material base, so it can go under clothes, and it includes a thermoregulatory layer, so it has the ability to cool a person down when they are hot, or warm them up when they are cold. It adapts to the needs of patients and it is very easy to add extra support. An extensive evaluation found that 80% of people preferred it to other collars. The HeadUp collar will be available on the NHS from April 2018. There will be more information on this in the spring edition.
More information Find out more about what was talked about at the Symposium on our dedicated webpages: www.mndassociation.org/ symposium/symposium-live Read live tweets from the Symposium as it was unfolding using #alssymp For a more detailed overview of the research discussed visit mndresearch.wordpress.com
Awards at the Symposium The Symposium is also a time to award those who made a difference in the world of ALS/MND. International Alliance Humanitarian Award for internationally significant nonscientific contribution for people affected by MND. Pete Frates, Patrick Quinn and Anthony Senerchia Jr. for their significant involvement in the Ice Bucket Challenge that raised over $220 million worldwide to fund MND research. International Alliance Forbes Norris Award for researchers advancing the management and understanding of MND.
Shay Rishoni Patient Impact Award awarded by Prize4Life for patients who made significant and outstanding contributions to ALS/MND research and drug discovery efforts. Bernard Muller and Robbert Jan Stuit for their initiation of Project MinE, the largest international genetic MND research analysing DNA of over 22,000 people to understand the genetic basis of MND.
Symposium Poster Prize to celebrate the high quality of clinical and Dr Merit Cudkowicz, Chair of Department biomedical posters presented by early-career researchers during the of Neurology at the Massachusetts Symposium. General Hospital, leader in MND research, passionate patient advocate, Katerina Placek (University of and mentor of young researchers Pennsylvania) for her biomedical poster involved in clinical trials. on genetic factors associated with frontal disease in ALS. Paulo Gontijo Award for outstanding Mehdi van Den Bos (University of Sydney) young investigators working on ALS/ for his clinical poster on imbalance in MND based on significance of their cortical inhibition-excitation network and published scientific paper. its effect on cortical hyperexcitability. Dr Marka Van Blitterswijk, Assistant Professor of Neuroscience at Mayo Clinic, Florida, USA, helped increase the knowledge of treatment strategies and prognostic tests for MND.
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Making the most For people living with MND, more planning and support may be needed, but a diagnosis does not mean you have to let go of your interests. As the disease progresses, you may of course need to adapt and do things differently. Our new booklet, Making the most of life with MND, looks at ways to help you achieve this.
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HEN Lee Millard was diagnosed with MND, he was devastated and worried about the future for him and his family. He was doing a job he loved at multinational tech company IBM and enjoyed frequent trips abroad. MND sadly meant some significant changes to this lifestyle. Lee said: “MND hits in two ways. First there is the absolute emotional punch that you are almost certainly going to die from this disease. This did not last long, and strangely now, despite very real progression, I am happy. Obviously I would rather it not have happened, but it has, so there is no point in dwelling on it. “The second hit is on the physical side; I was a runner, cyclist, skier and gym fanatic. In the first year after diagnosis, I had to stop running and cycling, I just couldn’t manage it anymore. But, I will never forget what my neurologist said to me on the day of diagnosis. I had asked him about the progressive disability, and how do people cope. He was blunt in his reply: ‘Lee, be prepared to adapt, and be flexible. The people who do the best
“For people living with MND, more planning and support may be needed, but a diagnosis does not mean you have to let go of your interests.”
Lee Millard riding his recumbent trike
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at life after diagnosis are neither those who refuse to change or those who fall into a wheelchair like a duck to water. Be somewhere in the middle.’ “He is right, be flexible – I have taken that advice. Life is about having aims. As a salesman, you have to have a motivation. No one did my job for me. After being diagnosed, no one would live the rest of my life for me. I’ve had to adapt and not mourn what I can no longer do, but find things I can do. It was after reading about another person with MND in America, that I found the recumbent trike. This is the only exercise I do now. Yes I miss those things, but nothing lasts forever. “I first started to ride the trike nearly two years ago. It has totally changed my life and got me exercising and outside again. I see it as a wheelchair, but powered by me. When I am out on my trike, I have many different feelings. It’s fresh air, and I am travelling around the village seeing people, and feel pretty much normal! It’s great. I get many comments, ‘Look at the bike Mum, can I have one?’” For the last six years Samantha Tooze has run her own dog walking business. Since her diagnosis of MND in 2017, she is determined to continue to work and to stay as active as possible.
“Leading up to diagnosis my head was all over the place. While the diagnosis was devastating, personally I felt better for knowing. I took it on the chin and thought I will not let it beat me. That is the attitude I have kept ever since. But there are days when I wish I wasn’t me anymore, when I could go back to how I used to be. I was a very active and independent person, so to have those things slowly taken away from me is hard to adjust to. “Of course, there are things that I have had to give up, like golfing. But rather than focus on what I can no longer do, I focus on what I can do. I am still working and I want to continue to do that for as long as I possibly can. To do this I have had to make changes. I have employed a friend who comes with me to pick up the dogs. I struggle with using keys, so she helps with this and all the other things I can’t do. “I was very keen to be involved in the MND Association. My family and friends also wanted to get involved and start raising money. I want to stay as active as possible for as long as possible so I did a 5k fun run. My amazingly supportive family have so far raised over £4,000 for my Fightback Fund. As well as helping others, fundraising has really helped my family to lift their spirits and have some fun. “As for next year I am already making lots of plans, including a skydive. I am always set for a challenge and the next big adventure. Whilst my independence has changed, my personality hasn’t. The only thing about me that has changed is that I used to think about other people rather than myself. Now I think about myself more and what I want to do.” Carol Johnson was diagnosed with MND in 2008. Carol said: “Receiving the diagnosis was the worst day of my life, I thought I was going to die. I hated it, always falling down, dragging my left leg and unable to wear high heel shoes. “After losing my speech a year later, I had to stop working and that was very hard for me. I have never accepted the disease, and it does make me sad, but I am now learning to focus on things I
of life with MND “Rather than focus on what I can no longer do, I focus on what I can do. I am still working and I want to continue to do that for as long as I possibly can.”
“I have learnt that you cannot let MND rule your life, you have to take charge and enjoy life to the full, as there will be no second chances.”
Samantha Tooze, right, with her friend Bev
enjoy doing. I am unable to walk, unable to speak, and I have carers to help me with most things. However, I really enjoy arts and crafts and my brilliant art teacher at the day centre encourages me to do things I would have never dreamed of doing. When I am doing art I forget I am seriously ill. It’s the best remedy to keep your mind busy. I have learnt that you cannot let MND rule your life, you have to take charge and enjoy life to the full, as there will be no second chances.” Our new booklet was developed in response to many requests from people with MND asking for information on how to make the most of life. Helped by people living with or affected by MND, our new booklet includes tips on how to continue to enjoy interests and activities. It also shares a selection of personal experiences of people with MND, who have found ways to continue doing things they enjoy.
You can download Making the most of life with MND by selecting the option for Guides at: www. mndassociation.org/careinfo Or order a printed copy from MND Connect: Telephone: 0808 802 6262 or email: mndconnect@mndassociation.org Carol Johnson
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A seven month journey around the health system in Northern Ireland In July, Siobhan Rooney became the first person in Northern Ireland to be elected to our Board of Trustees. During her career Siobhan has worked as a nurse, midwife and health visitor, and held senior management positions in a number of Health and Social Care Trusts and at Department of Health in Northern Ireland (NI). Siobhan shares her motivation for becoming a trustee.
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Y husband Martin, started to experience difficulty with his speech and swallowing in March 2007. It became increasingly clear there was something seriously wrong. Later that year our GP referred us to the hospital. That was the beginning of a seven month journey that took us around the health system in Northern Ireland. “We never expected MND and had very little awareness of it. Martin was admitted to hospital in 2007 for a number of respiratory investigations, but still no diagnosis. Six months later he was admitted to hospital and ended up in intensive care after going into respiratory arrest. We had our two sons with us and it was there we finally received the diagnosis of MND.
Siobhan and Martin
“Martin was very ill and having trouble breathing. He had a tracheostomy, a feeding tube and was given just one month to live. Martin wanted to go home, but this was viewed as too high-risk by some community staff. I was determined to fulfil Martin’s wishes and insisted we take him
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home. We didn’t know what the journey would entail. With the help of my two sons Barry and David, and their wives Ania and Katherine, our home was rearranged to accommodate Martin’s needs. “His needs were extensive with invasive ventilation, continuous supervision and 24 hours a day, seven days a week nursing care, along with eight weekly return trips to hospital for a change of tracheostomy tube and feeding tube.
“After a lot of encouragement I decided to apply to become a trustee. I had to negotiate for the support and care that we received for Martin.” “I soon became Martin’s main nurse and carer. Despite his complex nursing care needs we had no identified care package until three days before he died. “Looking back, I don’t know how my sons and I did it. It was an exhausting time. I was helped by my background in nursing and was not fazed by the management of the tracheostomy tube, invasive ventilation, feeding tubes and deep suction he continually needed in our home. Family and friends were all very supportive and one nurse who has become a good friend went beyond her hours to help. “Martin knew when he was ready to go. He was tired. After Martin’s death, I received a lovely letter from the neurology consultant. He said Martin wouldn’t have lasted a month in hospital. It was only from the care he received at home, that he was able to live for 18 months. “Martin has been dead for eight years now. After his death, I joined the Northern Ireland Branch, where I met a wonderful group of very dedicated and committed volunteers. Shortly after joining the branch, I became an Association Visitor and I’m now the branch contact. “After a lot of encouragement I decided
Martin Rooney
to apply to become a trustee. I had to negotiate for the support and care that Martin received. I knew the system, having worked within the Health and Social Care Service in Northern Ireland and even with all my contacts, I still found it hard. So how hard must it be for people who don’t have my background and experience? “It was wonderful to be elected and I’m very proud to be the first person from Northern Ireland to join the Board. I am passionate about the need to find a cure for MND. I want to use my experience, knowledge and background to help improve the care people living with MND receive, have access to the services that they need to enable them to fulfil their day to day living activities and maintain their quality of life. “While the care is somewhat better than when Martin died, it still needs to improve dramatically across the UK. I am proud to be part of a strong charity and look forward to finding new ways to influence care and improve clinical research through new collaborations locally, nationally and internationally. “In Northern Ireland, I want to be more proactive in engaging and lobbying key strategists, politicians, commissioners and service providers in the NI Health and Social Care Trusts improve access to services, service provision and in particular, respiratory services.”
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OR me, this time of year is about reflecting on the last 12 months, alongside making plans for the future. Now we are in 2018, we have entered the second year of our five-year strategy. Last year, we saw some changes to the Board, with a number of new trustees elected. This has brought a significant change for us all as these new faces also bring different knowledge, experiences and expectations. However, our focus and determination that our work positively impacts the largest number of people with MND as possible, remains the same. Our strategy is about adapting what we plan to do to nationally to fit what
Our focus and determination remains the same is actually happening at a local level – something of importance for all of us. I am pleased to say that as trustees, making sure people get what they need locally remains a priority for everyone from volunteers to the Chief Executive (see page 28 for more information on our regional work). At the York Regional Conference last November, I saw the importance of this regional focus and how vital our conferences have become in providing information and support to people living with MND, their carers and families. I am very pleased that the number of people attending our regional conferences is increasing, with thousands more watching annually via our Facebook livestreams. If you haven’t been to a Regional Conference already (or indeed even if you have) I would recommend you try to attend or watch online one of the four regional conferences this year. Volunteers help set the programme for conferences and we encourage them to take part, which makes the event especially relevant to each area. At the York conference, we focused on feeding tubes, sometimes known as ‘PEGs’ (RIGS or PIGS). Deciding whether to have one of these is an important decision. At the conference, we showed the ‘My Tube’ website www.mytube.mymnd.org.uk which is a fantastic resource for anyone considering getting a PEG fitted. You can
Alun Owen, Chair of Board of Trustees
read the stories about the people involved in this project on the website. If you are currently faced with the decision, I would recommend you take a look. This year will be my last as Chair, with Chair-elect Richard Coleman, ready to take over from me in July. Over the coming months Richard and I will be working closely together to ensure a smooth handover for him to take up the lead. And as for me, after July, although I will no longer be a trustee, I will be continuing my volunteering locally as an Association Visitor, branch committee member and as an MND Connect helpline volunteer. So I will still be busy supporting this wonderful charity and hope to continue the many friendships I have made at future conferences and events.
For more information please see our information sheets Information sheet 7A – Swallowing difficulties and 7B Tube Feeding. You can download our publications at: wwwmndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org Dates for regional conferences 2018: 24 March – Wyboston Lakes, Bedfordshire 29 April – Castle Green Hotel, Kendal 20 May – Holiday Inn, Filton, Bristol 15 September – Dunsilly Hotel, Antrim, Northern Ireland
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yourstories
Fundraising is a big step towards me trying to deal with the loss of my Mum
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icky Paeschel’s mum lived with MND for just nine months before she died aged 39. The eldest of six, Vicky was 18 at the time. Her youngest twin brothers were only three. Ten years on from her mother’s death, Vicky is determined to raise as much money as possible for the MND Association. “My Mum was the most caring person you could ever imagine and always put us children first. She was a stay-at-home Mum, looking after my twin brothers. Even when she started to struggle with her symptoms, she would always make sure we were okay. “After a winter holiday to Switzerland, where Dad was working at the time, her symptoms got dramatically worse. I remember the first time she texted and asked me to pick up the boys from nursery, following a fall. This soon became a regular thing, and nursery pick-ups became part of my day-to-day routine. “Dad was working away, so I became her main carer, looking after her, my siblings and making sure everything was okay at home. Whether it was getting the food shopping, or doing housework, I was trying to step-up as much as I could. It must have been so hard on her. She always wanted to have a big family and now couldn’t look after them. It was heart-breaking. “Mum was in hospital when we were all told to get there as fast as we could. That is when my Mum and Dad were told it was likely to be MND. We were always hopeful she would get better, that we would be one of the miracle stories you read about. “Looking back, I wish I could have done more, but we just didn’t really know what
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was happening at the time. Now she has gone, I wish I had spent more time at home, with her. I think that guilt is why it took me so long to get involved in fundraising – I just wasn’t ready before. Last year, I decided I wanted to do something positive and fundraise for the MND Association. I also wanted to show my siblings that it is okay to talk about it and that we can help others going through what we went through.
“No matter how tough these runs may be, the challenges Mum faced living with MND were far greater. With every kilometre I run, I think of her.” “Fundraising has actually helped. Being able to do something and see so many people out there who dedicate their lives to helping others makes you realise you are not alone in this, and that there is hope that one day a cure will be found. “I always hated running, but I was talked into doing a 5k last year. After somehow managing to cross the finish line, I started to develop an idea to set myself a challenge – 100k for MND Association. I am
aiming to raise £10,000 and complete a series of runs totalling 100k. “No matter how tough these runs may be, the challenges Mum faced living with MND were far greater. With every kilometre I run, I think of her. It has been her incredible strength and determination to continue fighting, that has been my motivation to keep pushing myself, train harder and show my siblings that our shattering experience with MND can help to make a positive impact. “It has been a privilege to meet so many inspiring people along the way, and I have been overwhelmed by the tremendous support, generosity and encouragement from my family, friends, colleagues and the MND community. Having got to know so many wonderful people who work tirelessly to make a difference, it did not take long before I wanted to get more involved and joined the incredibly dedicated South Yorkshire branch as a volunteer. In fact, joining fellow branch fundraisers for the Sheffield Half Marathon in April was one of my most memorable runs – it was an emotional day, but we had an amazing team and the support along the route was superb! “Both, fundraising and volunteering have been hugely rewarding and being able to support others affected by this cruel disease has helped me try to cope with the loss of my Mum. I know she would be proud, and I will continue fundraising and volunteering in her name.”
yourstories
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Revisiting lithium trials highlights importance of precision medicine
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ND is one of the most difficult neurological diseases to diagnose and treat. This is mainly due to its complexity, as the cause of the disease is likely to be a combination of genetic, environmental and lifestyle factors. Finding drugs to treat MND effectively is therefore based on first investigating the disease mechanisms – that is, the changes in our bodies that occur at the cellular level and cause motor neurones to die. Treatments for MND are now being developed based on these biological changes that happen in people living with the disease. But a recent paper, published in the journal Neurology, has the researchers thinking that we should be looking even deeper into the disease characteristics. The paper looked back at data from a few clinical trials investigating lithium carbonate as a potential treatment for MND back in 2011. While these studies showed that lithium didn’t appear to have any benefit, the revised analyses looked into the treatment effects on specific subgroups of participants, based on the genetic variation they were carrying. Dr Ruben van Eijk of University Medical Centre Utrecht in the Netherlands, who is the lead author of the paper, commented on the development and findings of the study: “In MND there are many small Phase 2 clinical trials that show positive results, however, when a larger trial is conducted, the treatment is, frustratingly, found to be ineffective. A well-known example is Dexpramipexole, which seemed beneficial in the exploratory Phase 2, but when the confirmatory Phase 3 trial with nearly 1,000
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participants was conducted, the positive effect was no longer there. “Together with Dr Michael van Es we hypothesised that this might be due to an imbalance in the distribution of genes in the different treatment groups in the trial. To clarify, we know that several genes can cause a more aggressive MND subtype; what if, by chance, all aggressive genetic subtypes are randomised to the placebo arm? This could lead to a false-positive result (that is, finding a beneficial effect where there isn’t one). Subsequently, when the trial is repeated in a larger number of people, imbalances due to randomisation disappear and the treatment seems no longer effective.
“There is more and more evidence that MND cannot be seen as one single disease. There are many different MND subtypes, each with its own variation in disease processes.” “To test this hypothesis, we started to match DNA profiles with clinical trial data. We chose two genes that were known at the time to be associated with a more aggressive MND subtype and that are relatively common among people with MND: C9orf72 and UNC13A.” The re-analysis of the study found that, while the lifetime expectancy of people with the UNC13A gene variation is markedly shorter than in other MND genetic subtypes, lithium only showed positive effect on survival in this group of participants. On average, of those people
with the UNC13A variation, 70% of people who were given lithium survived for 12 months or longer, compared to only 40% of those given placebo. No beneficial effect was found for people with the C9orf72 gene. “The survival effects of the genes were not a surprising finding and confirmed earlier reports. However, the finding that the treatment effect depended on genotype was very surprising. We were quite sceptical at first, because we only re-analysed the Dutch lithium trial. Therefore, we decided to contact our Italian and British colleagues to confirm our findings. The process of matching the genetic information with the clinical trial datasets was quite challenging, which is why this follow-up study took almost two years to complete.” The impact of this paper was significant, and not only for the new-found hope for lithium in MND. It is now even clearer that clinical trials could benefit from looking at specific genetic subtypes when looking for a treatment effect. The editorial by Armon and Hardiman (Neurology, vol 89, no.19), accompanying the paper, concluded: “Genomic profiling remains in its infancy in ALS. However, the work of van Eijk et al. marks the end of the beginning. The novel insights open a new chapter and provide new impetus to the field in its search for a cure.” “There is more and more evidence that MND cannot be seen as one single disease. There are many different MND subtypes, each with its own variation in disease processes. It is therefore unlikely that one treatment will be able to treat MND as a
“Being part of the MND community, I have realised my true calling.” This is the first of a series of interviews with our PhD researchers, following the Thumb Print readership survey where you asked for more research news.
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Dr Ruben van Eijk
whole. Genetics may help to determine which disease pathways are present in patients, and help clinical trials to determine the pathway the experimental treatment is most effective for – this is called personalised, or precision medicine. In oncology, there are many examples of genetic interactions with treatment, with the most recent example in melanoma (BRAF genotype). Our results are a step towards precision medicine in MND.”
So what does this mean for lithium and its potential to treat MND? “Despite similar trends being seen in all three individual lithium trials, our results may still be a false-positive. This is primarily because the analysis was not planned before the clinical trials and the overall number of participants is still quite small. We are therefore planning a new lithium trial to be conducted exclusively in people with the UNC13A variation. “Approximately 140 participants would be required to confirm our findings. However, as only 12% – 19% of people with MND are carriers of this gene, we would need to genotype over 1,000 patients. With around 400-500 newly diagnosed cases per year in the Netherlands, the trial, hoped to start this year, will be held in multiple European countries.“ Please note that genetic testing for the UNC13A gene is not currently available on the NHS.
mit K. Chouhan is a PhD student at the University of St Andrews. Under the supervision of Dr Gareth Miles, he is using human stem cells to understand what makes motor neurones sick and die early in MND. “My PhD research project aims to decipher disease mechanisms (the biological processes that happen in the body, causing a disease to develop), which are important for the design of new treatment strategies for MND. I am doing this by using induced pluripotent stem cell (iPSC)-based technology, which allows us to reprogramme skin cells into motor neurones. This enables us to study human motor neurones and other cell types produced from iPSCs of people with MND in laboratories.
“I have realised my true calling which is to make a difference in the lives of people with various brain diseases by utilising my scientific knowledge and training.” “Specifically, I am using iPSC derived motor neurones and specialised supporting cells called astrocytes, to investigate changes in neuronal excitability (that is, changes in the way motor neurones convert the signals they receive into action potentials – the electrical signals necessary to control muscles). Using long-term co-cultures of these cells, we have discovered that astrocytes derived from skin cells of patients cause dysfunction in motor neurones from people with MND and from healthy controls. This dysfunction is characterised by progressive loss of action potential output (reduced excitability) due to loss of ionic currents. “I am currently investigating which ion channels (‘tunnels’ in cell membrane allowing flow of ions in and out of a cell) are responsible for reduced excitability of motor neurones. These channels could then serve as potential targets for developing novel treatment options for MND. As well as advancing understanding of the disease mechanisms, my work has highlighted the potential for co-cultures
Amit K. Chouhan
of human iPSC-derived motor neurones and astrocytes as a robust platform for screening drugs. “In December 2017, I attended the 28th International Symposium on ALS/ MND in Boston, where I presented a scientific poster called Functional maturity of motor neurones derived from control and ALS patient iPSCs is affected by human iPSC derived astrocytes. The Symposium is very important as it brings together clinicians and basic scientists working on MND under one roof. Presenting my work at this conference enabled me to get feedback on how to improve and advance my research from world leaders in the field. To further refine my research work for developing drug screening methods, inputs from clinicians who interact regularly with people with MND was immensely important. This conference also provided me with an opportunity to network with my peers in the field and establish new collaborations to further advance my research. “After completing my PhD studies, I plan on using my knowledge and experience to develop new platforms for drug screening, which will further facilitate drug discovery processes for MND and other neurological disorders. Being a part of the MND community, I have realised my true calling, which is to make a difference in the lives of people with various brain diseases by utilising my scientific knowledge and training.” www.mndassociation.org
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Hints and tips “I wanted to see my baby achieve his childhood dream.” N response to our Thumb Print reader
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survey we asked what you would like to see in the magazine. A number of you asked for a ‘readers tips’ section where readers send in what items they have found useful or tips to help make things more manageable. Dena’s husband Sam has MND and found it helpful to make a CD that they can relax to, as a way to reduce stress and feel able to face the day’s challenges. Dena said: “The fatigue of 24 hour care, sapped us. We didn’t want to lose our faith, so one day I put some healing verses on a CD. It reassured my husband that he could hear my voice at any time. “The verses were from the Bible. Healing comes in so many ways. For me, listening to the verses, restored my peace, my joy, and it reminded me, we are not alone on this journey. It reminded me that so many people have challenges. Listening to the healing verses, helped us through our lowest days and nights.” If you have any tips or pieces of equipment that have helped you, please share them with others by emailing editor@mndassociation.org
Communication Access Symbol – share your views
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HE Royal College of Speech Therapists, Communication Matters, the MND Association and the Stroke Association are developing a nationally recognised communication access symbol, similar to the generic wheelchair and hearing symbol that is accepted internationally. It would be shown in shops and businesses where trained staff will be able to assist people with communication difficulties. We want to get the views of people affected by communication difficulties about the symbol they would like to see. To take part in the survey visit www.mndassociation.org/symbol
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From hoists to passing-out parades our grants are as individual as the people we are here to support.
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orraine Farrell was diagnosed with MND two years ago, leaving her unable to walk and requiring 24 hour care. When her son Connah, completed his training to join the Royal Navy, Lorraine feared she would miss his special moment and that the trip from her home in the Wirral, to the passing out parade in Plymouth, would be impossible to make. Following a call to Lorraine’s local group in Wirral, the MND Association provided funding and support so that Lorraine could see her son achieve his dream of joining the Navy. Lorraine said: “MND has had a huge effect on me and my family. I have gone from a busy and active life, working with and riding horses, to being totally incapacitated in just two short years. It has brought a great strain on the family but my husband, Charlie, ensures I get everything I need and our care team is fantastic. “We have benefited from support from the MND Association, especially the Wirral MND Group who are always willing to chat. I was desperate to see Connah at the passing out parade and be part of his special day. But with my 24 hour care needs, I couldn’t see how we could ever make the trip. The logistics were so complex, made even worse by being admitted to hospital just days before the parade. “Charlie said it was worth exploring and called the group to ask if there was a branch in Plymouth who could help us find a specialist place to stay. They told us about the grants the Association provides and encouraged us to apply. “The process was very easy. We were just asked to supply costings for travel and accommodation. The grant helped us to hire a bigger disabled access vehicle to
Lorraine and son Connah Farrell
ensure I was comfortable for the trip. It also paid for our carers to travel with us so my 24 hour care was unbroken. “I can’t put into words what this support has meant to my family. I have been very ill over the last few months and I desperately wanted to see my baby achieve his childhood dream. We are a military family and this is a huge moment for all of us. “Connah has done Charlie and myself proud by excelling in his training, not only becoming the class leader, but also winning the Ganges Trophy awarded for the best team performance during training. Thanks to the MND Association, and especially the Wirral Group, we were able to be there to celebrate his achievements.” If you would like more information on our grants contact MND Connect helpline: 0808 802 6262 or email mndconnect@mndassociation.org
“He can’t talk, but I learnt so much about my Grandad.”
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HEN 14-year-old Emily Boulton had to decide what to do for her Duke of Edinburgh Bronze award she knew immediately what she wanted to do. Having seen how MND has left her grandfather John Boulton, unable to hold a book, she decided to visit him on a weekly basis to read to him. She has now read several books, including one about his hometown Ludlow, during his childhood. Through reading, Emily and John have been able to look back and reflect over his past, including his time doing National Service, and the countries he visited. Emily said: “As well as reading to Grandad I would also massage his muscles so that he didn’t feel uncomfortable and in as much pain due to this awful disease. I learnt about how much MND affects people and what they have to go through in order to live with this disease.
“I also learnt more about my Grandad in ways that I wouldn’t usually as he no longer has the ability to talk and tell stories. By me visiting him, it has made him feel less isolated and lonely. It also gave him something to look forward to. I thoroughly enjoyed the experience.” Our age specific information for children and young people is designed to help them understand more about MND. Finding the right information, support and services immediately after diagnosis can help the whole family. If you would like to access information and support visit our website www.mndassociation.org/ypinfo or contact 0808 802 6262 or youngconnect@mndassociation.org Emily and her Grandad John Boulton
Information updates
Making the most of life with MND: our new A5 booklet explores ways to adapt to life with MND, yet maintain interests. Feature pages introduce people living with MND and their carers, who share their approaches to life, hobbies and experiences. See page 8 and 9.
Carers hub: following work on our About MND web pages, our hub for carers, family and children has also been redeveloped. Finding the information you need should now be easier, with simple drop-down selections. Explore the hub at: www.mndassociation. org/carers
End of life – a guide for people with motor neurone disease: our award-winning guide has been revised and updated. This resource is helping to build a bridge between families and professionals, during difficult conversations about end of life decision making. It now includes references to the NICE guideline on MND.
Information sheet 10A – Benefits and entitlements: this popular sheet has been revised and condensed to make it easier to reference. It now includes guidance about our new Benefits Advice Service.
Information sheet 10E – Work and MND: we have updated our guidance for people with MND and carers, on decision making about continuing or leaving employment, and your rights.
You can download our resources at: www.mndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org
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Specialist posts to support people with MND Zoe-Anne Gaymes and Liz Garrood
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E know the difference specialist roles can make supporting people with MND. So, in partnership with the NHS, we are establishing some new roles in Bedford and Luton. These posts will help reduce unplanned hospital admissions and enable people to stay at home with their loved ones for longer. Zoe-Anne Gaymes, Rare Neurological Conditions Clinical Nurse Specialist and Liz Garrood, Specialist Neurological Co-ordinator have been recruited to two of these new posts and speak to Thumb Print about how they are improving the care people with MND receive. Zoe-Anne is based at St John’s Hospice in Bedfordshire and supports people with MND across the county. Zoe said: “Specialist nurses are especially valuable in complex cases. I support people in their own homes, as well as working with local healthcare professionals to improve their knowledge of MND. “Previously people with rare neurological conditions in this area would have to see many different healthcare professionals in many different settings, but my role now ensures a co-ordinated and joined-up approach to care.” Zoe-Anne’s role was the result of a campaign by the MND Association for Bedfordshire Clinical Commission Group (CCG) to joint-fund with the MND Association, a rare neurological conditions
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nurse specialist. Award-winning broadcaster the late Stephen Rhodes, was highly instrumental in the campaign and as Campaigns Contact for the Luton and South Beds Branch, helped to persuade the Bedfordshire CCG to joint-fund the post.
Stephen Rhodes
Zoe continues: “I am the first point of contact for patients, so they need just one number to call. Being based at the hospice, it is also a good way to introduce patients to a hospice setting, without them feeling that hospice means end of life care.” Liz Garrood’s role covers Luton and is based at Keech Hospice Care. Liz said: “I am with the patient on their journey from diagnosis, right up until the very end. I am the patient’s advocate and I provide them with a single point of contact for their care.
“Once a patient has been referred to me, I will contact their GP to request a copy of their medication and a clinical summary, along with any clinics they attend. I then visit the patient. I am always very honest with my patients and when we talk about the support they would like, I outline what is realistic. “My work helps to simplify things for both patients and professionals, who benefit from a co-ordinated service, with regular communication. This in turn empowers patients, allowing them control to make informed choices about their care.” Services in both areas are stretched, but having seen the difference these roles can make, Liz is positive about the future. “When I was employed as a specialist neurological nurse in Hertfordshire, we set up a similar service that demonstrated improved access to timely care and enhanced quality of life for people with MND and their carers. It also reduced unplanned hospital admissions saving the CCG £500,000 a year.” Last year we provided funding to establish three new specialist practitioner posts in Bedfordshire, Bath and North East Somerset and Swindon. We also part-funded a Neuropsychologist in Middlesbrough to focus on behaviour and cognitive function. Six further roles are currently being rolled out.
MND Register now launched
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hilst genetics continue to give us an insight into the disease, the causes of MND are likely to involve a complex combination of genetic predisposition and environmental factors. In a previous edition of Thumb Print we reported on the development of a register of people living with MND in England, Wales and Northern Ireland. The MND Register is a research study funded by the MND Association and led jointly by Professor Ammar Al-Chalabi at King’s College London and by Professor Kevin Talbot at Oxford University.
“The MND Register is a unique opportunity to help us collect information from people living with MND in a central place for researchers.” Identification of environmental factors has so far been slow, with little definitive progress to date. However, now the register is up and running, researchers will be able to explore the environmental causes of MND in more detail. The register consists of a database and website that will hold information on every person with MND in England, Wales
and Northern Ireland. People with MND may be invited to take part during an appointment at their MND clinic. They are also able to take part online via the project website: mndregister.ac.uk The aim is to collect information about every person with MND. The information collected can be used to learn how a person is affected by MND, how the condition progresses and how many people have MND in different areas. This will allow research into the causes and characteristics of MND and help inform care planning. The Register will connect people with MND to researchers, including those conducting clinical trials, and will provide valuable information to guide the future development of care services. MND is relatively rare, so it is important to collect information in as complete a way as possible.
Kirsten Kelly, Research Programmes and Partnerships Manager at the MND Association said: “There are many small contributory factors that may combine together to tip the balance towards a person developing the disease. Our MND Register is a unique opportunity to help us collect information from people living with MND, in a central place for researchers to be able to find out what these small contributory factors may be. “We hope that as many people with MND as possible are able to sign up. This can either be through their care centre, clinic or direct via the website. The MND Register will be an invaluable tool to help us understand more about MND and help us answer the question, what causes MND? Anyone who has been diagnosed with MND and who lives in England, Wales or Northern Ireland is encouraged to take part in the study and share their information. Thank you to everyone who have already or will submit their details in the future and help us to gain knowledge about MND. Take part online at www.mndregister.ac.uk
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I believe we will find a treatment in my lifetime. Prof Ammar Al-Chalabi is an MND Association-funded researcher and Professor of Neurology and Complex Disease Genetics at King’s College London. He is also the Director of our MND Care and Research Centre at King’s College Hospital.
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N 1999, he was awarded the MND Association Charcot Young Investigator Award for his PhD research on the genetic risk factors for ALS, and in 2016 won the Sheila Essey Award for ALS research from the American Academy of Neurology. He has built an impressive research portfolio and published academic papers in leading journals. Prof Al-Chalabi and his team at King’s College Hospital have helped to identify many of the genes involved in MND development. They now contribute to several large studies looking for MND genes, including Project MinE – an international project analysing the genomes of over 20,000 people. Prof Al-Chalabi speaks to Thumb Print about how he came to specialise in MND: “I became a neurologist by chance. Neurology is seen as the most complicated area in medicine, so people are not naturally drawn to it. But, a chance meeting with a neurology consultant I knew, who was looking for cover for his neurology registrar, led to my career devoted to discovering more about the complex causes of MND. “I will never forget the first patient I saw with MND. Like me, he was a drummer, and when we spoke, we had a lot in common. He was getting increasingly frustrated because he could no longer hold his drumsticks. Having to explain to him that he had MND was very difficult. At the time there was no specialist centre I could refer him to. Essentially he was sent home to try and make the most of the time he had left. “I wanted to do a PhD and started to think about where to apply for funding. A colleague told me that consultant neurologist Prof Nigel Leigh had some funding and to give him a call.
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“When I started my research in genetics, the current thinking was that MND wasn’t caused by faulty genes, unless it was the familial version. My career over the last 24 years has been focused on proving that assumption wrong. Now, it is widely acknowledged that the cause of MND is likely to be a combination of genetic, environmental and lifestyle factors. “When I first started, if you would have asked me if we would ever be able to effectively treat MND I would have said ‘No’. I always thought it was worth striving for, but it seemed impossible to achieve. I feel very differently now. “People often ask me ‘are we really making progress?’ The answer is ‘Yes.’ The situation 24 years ago is very different to the one today. We didn’t know about cognitive impairment in people with MND back then. There wasn’t riluzole, or non-invasive ventilation, and palliative care was just for cancer patients. We hadn’t identified any causative genes, apart from SOD1, which just applied to a small number of people with familial MND. There are a lot of things and indeed knowledge we take for granted now, that simply did not exist then. “The care offered to people with MND has changed considerably. Over 20 years ago, Prof Leigh saw that there was no specialised service for people with MND. He saw how important physiotherapists, occupational therapists and other health care professionals were for people, which led him to set up a multidisciplinary clinic. This developed, and a few years later we applied for MND Care Centre status and received funding from the Association for an MND Care Centre Co-ordinator, becoming one of the the first MND Care and Research Centres.
“The technology in the lab has also changed dramatically. Now we can sequence genomes and have a much more detailed way of measuring people and monitoring their functions, giving us new insight into how the condition progresses.
“As we discover more parts of the pathway towards developing MND, we can build up a picture of how and where we need to target the disease.” “The number of new causative genes being identified is doubling every four years, thanks to evolving technologies for gene mapping and DNA analysis. Your genes are code for how your body works, so if you can find a problem in the genes, it is a significant piece of the jigsaw. We are trying to find the biological pathway that causes motor neurones to die, and how changes in the genes lead to MND. Finding the answers will help us to develop future treatments. “When I first started as a neurologist at King’s College Hospital, I was told by Prof Leigh to never destroy hope. I always try and remember that. Hope is so important. Our work in the lab provides that hope. We are learning so much now and our ability to understand what we are learning has improved greatly. I firmly believe we will find a treatment while I am alive. “We are now looking very widely at what could be causing MND in ways that have never been done before. A good example of this is the emerging research into the impact of gut bacteria. It looks like humans have a strong relationship with germs that live inside our guts, where the pattern of germs seems to affect how well we are protected from, or prone to, different conditions. One theory is that when some of the germs leak from the gut and enter the blood stream, they can turn the person’s immune system against them, and attack healthy motor neurones. The MIROCALS clinical trial is attempting to improve the immune response by increasing the levels of specialised immune cells (regulatory T cells) that protect motor neurones. “People often ask me ‘are we really making progress?’ The answer is ‘Yes.’ The situation 24 years ago is very different to the one today.” “There are other clues. For example, one of the cellular hallmarks of MND is related to faulty functioning of the TDP-43 protein, a structure that is naturally present in all of our cells. In healthy cells, TDP-43 is found in the centre of the cell (the nucleus) where it attaches to RNA (our cell’s copy of DNA that is used to make proteins) and helps to extract information carried by a gene to form proteins, the main building blocks of our bodies. “When the function of TDP-43 is affected, it tends to transfer itself outside the nucleus where it abnormally accumulates and sticks together to form toxic ‘clumps’. This is a huge clue for 98 per cent of cases of MND. We also know that other genes for other proteins are sometimes involved. The most common genetic mistake is in the C9orf72 gene where a segment of DNA is wrongly repeated thousands of times. “Mitochondria also play a part in people getting MND. All our cells contain tiny ‘batteries’ called mitochondria, which are
responsible for producing energy for the cell and also play other key roles in maintaining the cell’s normal function. Mitochondria in motor neurones of people with MND appear abnormal. “As we discover more parts of the pathway towards developing MND, we can build up a picture of how and where we need to target the disease. In the meantime, we are understanding more about different types of MND. This is important for the future treatment of the disease, an area called precision medicine. If you are treating pneumonia, you identify the type of bacteria causing it and then choose the best antibiotic to treat it. This is what we need to do with MND. We need to know the pattern of MND and find the best drug to target it. We need to understand how it manifests itself, so that we can create a specialised personalised treatment. That is our ultimate goal. “This is already starting to happen with the current clinical trial to test a strain of anti-SOD1 gene therapy where patients with a genetic defect in the SOD1 gene will be given a modified virus to deliver a gene repair system. There is also a clinical trial looking at gene therapy for people with a genetic mistake in the C9orf72 gene. We know that this approach works well in other neurodegenerative conditions like spinal muscular atrophy (SMA), the child form of MND. It has been shown to really slow down the progression if given very early on. “Finding causative genes means that we can study the gene defect in the lab and try different treatments really quickly by giving drugs to the cells to see if they rescue them. This is a very useful way of screening drugs. “It is hugely important that researchers are able to share and build on each other’s ideas as it will take a global effort to effectively treat MND. The Symposium is a crucial part of the year for MND researchers where we can share ideas. Quite often when I have been listening to a talk, it will make me think in a different way. At a previous Symposium, I heard Prof Martin Turner’s talk about the importance of the timing of patients’ symptoms. It led me to think about how we stage the disease; this resulted in developing a method called Clinical Staging, where we used information about our patients to work out the length of time they spent in each of four proposed stages. It is a way of saying how far through someone has progressed, rather than how long they have had the disease. This is now being used in clinical trials by drug companies. “We are now looking very widely at what could be causing MND in ways that have never been done before. A good example of this is the emerging research into the impact of gut bacteria.” “More research into MND is taking place than ever before. A large part of this is down to the determination of people affected by the condition who raise money to fund research like mine. It is also down to the commitment of people with MND to take part in research, to help further our knowledge of this devastating condition.” To hear more from Prof Al-Chalabi visit our symposium pages at www.mndassociation.org/symposium www.mndassociation.org
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£360,000 the biggest step yet
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his year more people than ever before took to towns, cities, beaches and hills to raise funds and awareness. A record-breaking number of Walk to d’feet MND events were held, ranging from a stroll in the park to scaling mountains. Money is still coming in, but we estimate last year you have raised an incredible £360,000. This is the largest amount our walks have ever raised and it’s thanks to all of you who supported them. Taking part in our walking fundraiser is seen by many as a way of fighting back against MND. Alan Towart (pictured) is living with MND, but he didn’t let that stop him taking on 86 miles of Hadrian’s Wall in September with his wife Dawn. Together with their family, friends and colleagues, they raised an incredible £5,200. Barry Wilson is also living with MND and wanted our Nottinghamshire Branch to be part of the national event, with a walk in Sherwood Forest. Barry said: “Just because we have MND, it doesn’t mean you can’t organise an event, be it a tea party or a walk. I used to belong to a walking group so I thought if my family can fundraise, why not me?” Many people organised a walk to honour and remember loved ones. The Kapur family and friends decided to organise a walk as a way to pay tribute to Ramesh Kapur who died from MND earlier this year. Ramesh had been influential in
organising the Maidenhead Boundary Walks for many years, so walking the 13 miles was a fitting tribute to a highly respected and much-loved man. Shivani Kapur said: “We did it, our 35 walkers, walked 13 miles and smashed our target. Together our group has now raised over £3,300, in memory of Ramesh.”
“Just because we have MND, it doesn’t mean you can’t organise an event, be it a tea party or a walk.” Nick Williams with friends and colleagues decided to organise trekking events in the Scottish Highlands in memory of Nick’s mother-in-law Joan, who died from MND in 2016. They wanted their walk to be a challenge so, did not just one, but three mountain challenges, raising an incredible £14,000. Some walks were held to raise funds for Tribute and Fightback Funds. Ian Craddock rallied a team of 50 to climb the Yorkshire
Nick Williams and his team
3 Peaks. Family, friends and colleagues came together in memory of Ian’s brother Mike Craddock, a keen walker. They raised an incredible £15,500 and exceeded their target to achieve £24,000 for Mike’s Tribute Fund. For many, organising and taking part in a Walk to d’feet MND has become a yearly event. Rachel Impey, one of our many valued and a long-term supporters, organised a 15 mile walk with her colleagues at Vodafone, in memory of her dear friend Alex, raising an amazing £2,300. Thank you to all our branches, groups and everybody who took part in Walk to d’feet MND this year.
Shivani and Sundeep Kapur
Rachel Impey and Team Vodafone
If you would like to organise a walk in your local area, our fundraising team will support you with everything you need, just email fundraising@mndassociation.org or call on 01604 611860. Alan Towart with his wife Dawn
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Royal Parks runners raise £175,000 Cathy Haynes
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ur biggest ever team of 157 tackled the Royal Parks Half Marathon on a warm October day to raise an outstanding £175,000. London’s Hyde Park was awash with orange and blue tutus and wigs and #TeamMND welcomed a playboy bunny and the Super Mario Bros. Mario and Luigi while a cookie monster offered encouragement at our cheer point. Runners ranged from just 17 to 70 years old and our fastest finisher achieved one hour 22 minutes. We were supported by 30 members of staff from Credit Suisse, who chose us as their UK Charity of the Year last January. One of those was software developer Jack Berry, who shaved his head on the day to raise more funds. He said: “I remember seeing a TV programme about people affected by MND and thinking just how horrific it must be. I just want to help out and do my bit to help those affected. In hindsight, I should have done my head shave as a separate event because people really, really hated my top knot!” Father and daughter duo Faron and Aimee Cross, ran through the finish line together in support of #TeamMND. Faron, who was running the race for the seventh time in memory of his father-in-law Colin, was joined his daughter in her first ever half marathon. He said: “I had known Colin for over 25 years and he played a large part in my life. He was a guy who worked hard, loved his
family, played golf and enjoyed a pint. He was very proud that I was helping others like him. If I continue to run and support the charity for many years to come, I still won’t be able to pay back the support given to Colin. Plus, it could make a difference to others in the same situation.”
“It is still a charity which few people know much about and I want to do everything I can to help find a cure.” Faron previously completed the Hackney Half Marathon with his daughter Lily. 19-year-old Aimee said: “Seeing Lily and my Dad run has inspired me to also want to support MND in memory of my granddad.” Siblings Alex and Charlie, who have raised over £21,000 so far for the MND Association, dressed as the Mario Bros to take on the race in memory of their dad. Alex said: “This is the first time Charlie and myself have done a race together. We love to compete against each other. Our Dad would have loved it. He loved watching us play sport.” We also had a team of 50 corporate runners taking part for the third year in a row, one of whom was Cathy Haynes. Cathy continues to fundraise for the MND Association in memory of her dad Michael Burns, who died of MND in 2010. Cathy said: “It is still a charity which few people know much about and I want to do everything I can to help find a cure.” The Tribute Fund set up in honour of Cathy’s dad has so far raised a massive £168,000 for the MND Association.
Andy Sawyer and Jack Berry
Alex and Charlie aka Mario and Luigi
Faron and Aimee Cross
To sign up for the Royal Parks Half Marathon on 14th October 2018 visit www.mndassociation.org/rphm If your business would like some corporate places in the race email richard.parris@mndassociation.org
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Helping people with MND ‘keep’ their voice W HEN Elizabeth Brock’s speech started to become affected by MND, her family were keen for her to bank her voice, so she could continue to communicate with them. But, with patchy broadband coverage and limited experience with technology, Elizabeth didn’t know where to start. Elizabeth said: “I knew it would be a good idea to bank my voice, but I was having difficulty finding out how. I got in touch with my local Regional Care Development Adviser (RCDA) for help. That help came in the form of Kim, who arrived at my home armed with a laptop and headset microphone. Kim has held my hand throughout this whole adventure. I could not have done it without her help. “My voice is getting weaker and it is a great comfort to know that I will be able to ‘keep’ my own voice. The day we downloaded my new voice onto the ipad felt like a big moment, and I felt prepared for the future. I am so grateful for Kim’s help as a volunteer and the financial support from the MND Association too.” More than 80% of people living with MND will develop communication difficulties and, as the disease progresses, many go on to lose their voice entirely. Voice banking allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. This recording is then converted to create a personal, synthetic voice. The voice created won’t be a perfect replica of the person’s natural speech, but it will bear a strong resemblance. Following a preliminary trial in Portsmouth, we are developing a voice banking volunteering service. We are currently in the process of recruiting volunteers to be trained in voice banking, and hope to pilot the new service in seven areas in the next couple of months. Our first voice banking volunteer was Kim Archer. Kim decided to volunteer for
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the Association as an Association Visitor after two friends were diagnosed with MND. During her time as the CEO at Phyllis Tuckwell Hospice some years ago, Kim had experience of helping people with MND through the development of services with her team to support voice recording for electronic speech. The technology now is much more sophisticated and easier to use for those who wish to voice bank. With this experience Kim become a trial voice banking volunteer alongside her AV role.
“My voice is getting weaker and it is a great comfort to know that I will be able to ‘keep’ my own voice.” Kim said: “When my friends were diagnosed with MND, I researched speech devices and communication aids that might be available for them should they need them. It has been very difficult to see them worsen over time, but helping them bank their voice has been a very positive step. “I contacted the local Regional Care Development Adviser Louise Rickenbach, for information on voice banking technology. During the conversation I asked about volunteering, and that conversation set me on my path to become the Association’s first voice banking volunteer. We discussed the development of voice banking services and, as I had recently semi-retired, I had more time to commit to this important new project. We started the trial in the south, and, if it worked it was to be tested in other areas. There was tremendous enthusiasm for the project from all parties such as NHS specialist teams including speech and language therapists. “I support people with voice banking either in person or over the phone. I have visited Elizabeth a few times. Despite experiencing some initial problems with technology, she is very determined and
completed the programme in record time. “When people with MND are referred to me I talk them through what is involved, and get a feel for how comfortable they are using a computer. For those who are local, I arrange a visit so I can show them an example of what my banked voice sounds like. If they are keen to proceed, I take them through the process and how much time commitment is involved. “Sadly, some people with MND had already lost their voice when they learned about voice banking. But, we can and have used family members. Recently we were able to assist a daughter to bank her voice for her mother to use. “People who are not familiar with computers can bank their voices. The software we use is simple and involves repetitive steps. Once learned, after a few goes, it becomes easy. There are 1,600 sentences to record. It sounds like a lot, but if the person with MND has a strong voice, they can do an hour or so daily and will be finished in just over a week, though it can often take longer if the person is unable to
From volunteering request to garden makeover
F
ollowing their colleague Michael Litt’s diagnosis of MND, a team from the mobile company Three, contacted the Association, offering to spend one day volunteering. The request was sent to Association Visitors in the Reading and West Berkshire area and Wendy Gouldthorpe found the perfect project. A retired couple, Mrs and Mr Kaur, who is living with MND, were struggling to get their garden ready for winter. Wendy visited the couple to find out what needed doing, and was there to meet the team from Three. Wendy said: “The guys from Three were really great, very enthusiastic and energetic. They went above and beyond what I’d originally asked for. By the end of the day everything was looking beautifully clean and tidy, ready for winter. Mr and Mrs Kaur are so happy, as this has taken a great weight off their mind” If you, or your company would like to volunteer please contact volunteering@mndassociation.org or call 0345 6044 150.
Wheelchaircars.co.uk make a regular daily commitment. “It has been an enormous privilege to support people with MND and help them continue to have a voice, and not just any voice, but their voice. Several people with MND we have supported have gone on to use their synthesised voice. Many are surprised at just how much their new voice sounds like their own. “People with MND lose so much. In a small way, we can help them to keep their ‘voice’ which is more precious than most people realise, and importantly, a means to communicate should they lose their voice.”
Need support now? We are still in the pilot phase of this project, so this support is not currently available nationally. The MND Association currently has a small stock of headset microphones and laptops available to loan, if required, and can offer financial support to pay for voice banking services. For people living with MND: 7C – Speech and Communication Support information sheet and 7D – Voice Banking are available from MND Connect or by visiting www.mndassociation.org/speech For queries about voice banking or communication aids contact: telephone 0808 802 6262 or email communicationaids@mndassociation.org
FREE NO OBLIGATION HOME DEMONSTRATIONS USED VEHICLES FROM £2995
Tel: 0161 793 5934 Full details on our website, www.wheelchaircars.co.uk
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Championing the Charter Tony and Heather Twine
Campaigns Contacts shortlisted for volunteering award
O Walsall Council Charter adoption l-r Tim Atkinson, Cllr Ian Robertson, Devinder Kalkat and Jackie Dornford May
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VER the past few months, campaigners have been engaging with councils to adopt our MND Charter and show their commitment to local people with MND. In November, Stockport Council became the 56th council to adopt the MND Charter, due to the campaigning efforts of Campaigns Contact volunteer, Greg Broadhurst. Greg said: “I’m very pleased to secure my hometown, Stockport, as the fifth council to show support for the MND Charter in Greater Manchester. Having been born and bred in the town, and an active campaigner for people with MND, it gives me great delight to see this happen.” Following the adoption of our MND Charter, many councils have been working closely with volunteers and the MND Association to achieve more awareness of MND in their community, and to work towards providing better services for people living with MND.
In the last edition of Thumb Print, we wrote about the new specialist healthcare post for people with rare neurological conditions, due to start in December 2017. Surrey County Council adopted the MND Charter in 2016, championed by David Setters who has been living with MND since 2012. David also played a key part in the campaign to secure the post in East Surrey, as a follow up to the council adopting the Charter, and in raising awareness about the disease in his area. Since adopting our MND Charter, Walsall Council has worked with the Association to organise information sessions on MND for councillors and staff, a fundraising cake sale, and an information stall in the council cafeteria promoting Silence Speaks. We will be working closely with all the councils who have so far adopted our MND Charter, so that they are able to provide the best care to people with MND, their carers and families.
UR Campaigns Contacts were finalists for Volunteer Team of the Year at this year’s Third Sector Charity Awards. Campaigns Contact Heather Twine, who is living with MND, and her husband Tony attended the awards ceremony to represent the team. Heather said: “It was a wonderful evening in a spectacular venue, with interesting guests all doing immensely important work. We were so proud to be representing the MND Association and in particular the Campaigns Contacts team. It’s inspiring to be part of this team. They achieve so much through dogged determination. I’ve already had some positive meetings with councillors and MPs, but I’m amazed at the lack of understanding about MND in the general public, so we have much work to do.” Although our team did not win the award, their achievements are amazing and should be celebrated! If you’re interested in finding out more about volunteering as a Campaigns Contact, contact us on campaigns@mndassociation.org, or join our Campaigns Network to keep up-to-date on our campaigning work at www.mndassociation.org/ campaignnetwork.
Investigation into Continuing Healthcare (CHC) funding
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N the last edition of Thumb Print, we reported on findings from the National Audit Office and the Continuing Healthcare Alliance, which identified major problems with NHS Continuing Healthcare (CHC) funding. CHC is an NHS service which funds health care for people with very high levels of need, and has recently been criticised for issues including variation in eligibility and access across the country. On 1 November, the House of Commons Public Accounts Committee (PAC) held a hearing on CHC. We were able to provide a written submission to members of the
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Committee, and witnesses were called from organisations including the Spinal Injuries Association and Parkinson’s UK. The questions covered a wide range of issues, but focused particularly on performance and spending variation across different geographical areas. They addressed NHS England’s plans for cuts to the overall CHC budget, which Simon Stevens, Chief Executive for NHS England confirmed amounted to a total reduction of c.£850 million from the planned national CHC spend. The PAC will now produce a report including specific recommendations for
improvement, to which the Government is obliged to give a formal response, expected next year. We’ll be continuing to respond to the proposed changes to CHC, and will be working to ensure that the Government is held to account for delivering any commitments provided in their response. We’ll also be working closely with other charities as part of the Continuing Healthcare Alliance. If you would like to find out more about our vital work in this area please contact: Alex Massey, Policy Manager at alex.massey@mndassociation.org
Problems with PIP Members of the Manchester and District Branch and Central and East Lancashire Support Group
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EOPLE with MND are experiencing major problems accessing Personal Independence Payments (PIP) a report by the All-Party Parliamentary Group (APPG) on MND has found. The report was launched at our annual parliamentary reception. Over 130 volunteers travelled to Westminster from across England, Wales and Northern Ireland for the reception, including 39 people living with MND. The APPG inquiry found that people with MND were experiencing problems throughout the PIP process – from finding out about the benefit in the first place, to being reassessed unnecessarily. Madeleine Moon MP, Chair of the APPG said: “PIP is a crucial source of financial support for people with MND and it’s vital they can access it as quickly as possible. We hope our report will help shine a light on the problems people face.” Rob Owen who is living with MND, gave a speech about his experience of being subjected to several reassessments for PIP. Rob said: “In early 2017, despite the fact I was in the middle of contesting the previous assessment, I got notification I needed to be assessed again. That assessment resulted in my score being lower, so my PIP entitlement was going to be even less! “By this time my ability to do the simplest of daily living activities and mobility was severely limited, so I was
angry and determined to challenge it. I went to court, supported by a doctor and health worker. The very next morning we had a letter from the court saying our appeal had been upheld and we were going to be entitled to the full daily living and mobility allowance backdated to March 2016.
“PIP is a crucial source of financial support for people with MND and it’s vital they can access it as quickly as possible.” “Anyone else with less determination, drive and mental wellbeing would have given up and not fought the system. The cost, time and effort wasted on my case to deny my entitlement is unacceptable and this has an impact on my mental wellbeing and quality of family life. “This is why I believe there should be a ruling that anyone with a diagnosis of a chronic debilitating illness should not have to undergo repeat assessments and just rely on evidence from healthcare professionals.” The report makes a number of important recommendations to the Government on how to improve access to PIP for people with MND, including that people with MND should not be called for reassessments unnecessarily. Over 50 parliamentarians were represented at the reception from a variety of constituencies across the country. Volunteers spoke to MPs from their area
Rob Owen
Sally Light with patron Charlotte Hawkins with members of the South London Group
l-r: Jenna Jordan, Karen Smyth and Pauline Damp
about issues affecting people living with MND and their families, including the MND Costs campaign, and shared their personal experiences with MPs about the additional financial cost of living with MND. If you are experiencing problems accessing benefits, you can contact our Benefits Advice service. For more information visit www. mndassociation.org/benefitsadvice
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Supporting people affected
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HE care people with MND receive and the support available can vary dramatically depending on where they live. While our activities are always directed towards what will make the biggest difference to people with MND nationally, we recognise the need to adapt to local issues. Having identified what these are, Association staff and volunteers throughout England, Wales and Northern Ireland, are creating regional plans and influencing local NHS and social services to provide better care.
Tina at the hospice
of England InSouth the south
Plugging gaps in local services was boosted by the appointment of a new specialist rare neurological conditions post in East Surrey. However, our campaigning is now focused on Sussex where people with MND are having to travel to London for non-invasive ventilation. We are currently gathering evidence and developing a plan to improve respiratory services. Merete Langer whose mum has MND said: “The support we have received locally in Sussex has been exceptional. Mum really appreciates the care from the team and is relieved that her furthest visit is just nine miles away. However, travelling to London for respiratory support has been very challenging. “We were in the hospital for 60 minutes, but the whole trip took six hours from
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when we picked Mum up, to when we dropped her off. As she doesn’t like to eat or drink in front of anyone (even me now) and wasn’t using her PEG at that stage, it meant that Mum didn’t eat or drink for the whole of that period. Mum said that she will not make that trip again. This is a traumatic enough time for all of us without going through this.” Once we have more evidence, we will be launching a campaign for people with MND to be able to access respiratory support much closer to home.
of England InNorth the north
We are developing new ways of helping people affected by MND, including developing new support groups across the country. One new group that is already making a difference is in North Lincolnshire. With no local branch, people with MND
previously had to travel up to 40 miles to attend a support group. In response we recruited new volunteers and created a local group. Tina Rudkin, 55 is living with MND and attended the first session. A chef for 32 years, Tina enjoyed an active lifestyle running, swimming and playing hockey. By the time Tina was diagnosed with PLS, the slower progressing form of MND, she was already using a feeding tube (PEG) and ventilator. “I was told I had been living with MND for ten years before my diagnosis of PLS. Looking back, I can’t believe I managed for so long, without any help. I was in denial for a long time, I was so fit and healthy, there was no way I could have a condition like this. I didn’t want to see anyone, especially anyone with MND. “I felt frustrated and angry; why has this happened to me? I was in quite a
by MND – wherever they live bad place and didn’t want to accept help. Feeling isolated and alone, I kept my illness to myself. Attending the support group really helped me to start to talk about my illness. “It also put me in a position where I could help others. I spoke to a lady who was considering getting a feeding tube (PEG) fitted. There is nothing like talking to someone who has had it themselves. That is when it dawned on me how helpful and positive it can be to meet others who are going through the same thing. By meeting others I really felt like I was not alone. The meeting has made me open up a bit more and understand the disease better.”
NorthWales Wales North
People with MND didn’t have access to one-to-one support from an Association Visitor (AV) in North West Wales. There was also a need for Welsh-speaking AVs, but recruitment had proved challenging. When two potential volunteers were eventually identified, their personal situations meant they couldn’t complete the AV training required. So a solution was found, to deliver the training in Gwynedd and adapt it for the local area. Lynwen Griffith who has been a community nurse in the Llyn peninsula for over 20 years and having nursed people with MND said: “Having access to emotional support can make a big difference to families, but in my area, this type of support was not available. With my background in nursing, I thought I could help and that becoming an AV would be a rewarding thing to do. However, the residential training course was miles away,
Lynwen Griffith
and with my job and a family, I wasn’t able to attend. “But the regional team in Wales were so flexible and agreed to deliver the training nearby, so that I, and another lady could become AVs. As both of us are Welsh-speakers, their flexibility and ability to deliver the training bilingually meant we were able to plug a gap in the support people were being offered locally. MND can affect a person’s ability to communicate and in our area we have a large number of people who find it easier to communicate in Welsh. So, the ability to speak with them in their preferred language can be a huge benefit.” A North West Wales forum was also set up with a local branch and group, AVs and Association staff to help develop our services in North Wales. The group is making a huge difference to support available in the area that has gone from having only one AV to a total of six. The growth has been due, in no small way, to some creative approaches to raising awareness, including a cinema night for occupational therapy students which resulted in requests to become Association volunteers.
infrastructure that requires local input, local expertise, local skills and local lobbying on key campaign targets.
“To me, it reinforces the Association’s commitment to the needs of those in Northern Ireland, as well as England and Wales.” “Even seasoned lobbyists like myself, despair at the slow rate of decisionmaking at both local and Government departmental levels. It’s a skill in itself to have the capacity, endurance, enthusiasm and motivation to keep the lobbying pressures on at all levels within the complicated political chaos that exists in Northern Ireland.”
NorthernIreland Ireland Northern
Regional staff and volunteers are planning a conference in Antrim later this year. It’s being supported by retired Head Teacher Colm Davis, who is living with MND. Colm travelled to our regional conference in Liverpool last year. Colm Davis said: “I found the Liverpool conference reassuring and insightful. I felt it was important to hold a similar event in Northern Ireland and it was great to see that it will actually happen later this year. “To me, it reinforces the Association’s commitment to the needs of those in Northern Ireland, as well as England and Wales. Alongside providing people with MND vital local information, it also allows our hard working branch an opportunity to share the activities they have developed and demonstrate how these have helped local people with MND and their carers. “Collaborative planning, along with an effective system of monitoring and evaluation is starting to be the key to success in Northern Ireland. The Association recognises and respects the fact that Northern Ireland has a different
Colm Davis
This is just a very small selection of what is happening locally. Whether it is campaigning for new specialists posts, increased access to continuing care funding or setting up new support groups, our regional teams of staff and volunteers are working together to do everything they can to support people affected by MND. If you are affected by any local issue please contact MND Connect who will alert the regional team to what is happening.
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golf day for the Association, to thank the charity for the support provided to Joyce. Dill said: All of the family are involved; sons, daughters-in-law, grandchildren, great granddaughter and step granddaughter. The one-off golf day has turned into 15 one-off days! Every year we have a guest speaker from the Association which manages to bring tears to all the families’ eyes in memory of mum. “We can never repay the MND Association, but we hope we can help by doing what we do in memory of our mother Joyce.”
Annual event in memory of mum
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ill Thomas, has organised a golf tournament every year for the past 15 years in memory of his mum Joyce Thomas, who died from MND. Each year it raises over £4,500 and so far
the fundraiser has raised a staggering £63,000 for the Northampton branch. The Thomas family initially decided to hold a one-off
“70 per cent of our players in the golf day are members of the Cold Ashby Golf Club and their support is incredible. They nag every year for the next year’s date almost straight away. All our prizes are donated by golf clubs, business people and friends for which we are forever grateful. “We can never repay the MND Association, but we hope we can help by doing what we do in memory of our mother Joyce.”
Determined to raise awareness until the very end
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Charlie is only 29 but she’s dying. She has motor neurone disease. MND is fatal and before they die people are trapped in a failing body. It kills 5 people every day in the UK, half within just 14 months of diagnosis. Before it kills Charlie it will steal her speech, but she still has plenty to say. Hear Charlie’s story and how the MND Association is helping her, and thousands like her have a voice.
Visit www.mndassociation.org/charlie To donate £5 text MND VOICE to 70004 Texts Cost £5.00 plus network charge. MND Association receives 100% of your donation. Obtain bill payers permission. Customer care 08448479800. Charity No 294354.
to leave London and move back home to be close to the support of her family. Chris added: “After the success of the Voice campaign during Awareness Month we kept using Charlie’s image for our General Election campaign in 2015 and I know it resonated with so many people and really did make a difference in relation to communication aids support for people with MND “Her funeral was very Charlie; creative, musical and fun and it was an honour to be there representing the Association where she will be remembered fondly for a
This advertising space kindly donated by mnd association supporters. Thank you.
harlie Fletcher, one of the poster stars of the Association’s Awareness Month Campaign in 2014 has sadly died, aged 32. The smiling image with her trademark turquoise hair was used on the National Rail Network and Underground poster. She also went on to front our election campaign the next year – focusing on the need for better provision of communication aids. She undertook countless media interviews on behalf of the Association, including live TV on Good Morning Britain during our Awareness Month. Chris James, Director of External Affairs at the MND Association said: “I was honoured to work with Charlie on several media and campaigning opportunities. Despite her extrovert hair Charlie was actually quite shy, so didn’t find the media work easy. But in front of the camera she was a real professional and her candid approach to dealing with everything MND threw at her at such a young age impressed and inspired many.” Charlie was much more comfortable behind the camera and was making a name for herself in London in the film industry when she first started noticing the early symptoms of her MND. It forced her
very long time.” Brenda Parkes who was Charlie’s Association visitor (from 2013) then her Care Service Navigator said: “Charlie was certainly a very special person and I am so humbled to have known her. She achieved so much in such a short life and when I saw her just a few weeks before she died she was still keen to raise awareness of MND and was still writing her book. “Charlie was so creative and put a huge amount of thought into her funeral which was like no other – everyone wore turquoise and it was truly a special day.”
Colleagues show their support
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mother of two, Jane Morphet was the Managing Director of Headline Publishing Group, before receiving a diagnosis of MND. Her husband John Spayne, a senior partner at a corporate finance firm said: “Our world was turned upside down by the diagnosis. Jane is now in a wheelchair, struggles to speak, drinks through a straw, and has not slept for more than an hour or so at a time for the last six months. She is unbelievably courageous and stoic and still manages to carve out moments of
fun and joy in her day, but life is a huge and constant struggle.” When John told his colleagues at Spayne Lindsey & Co. the devastating news that his wife Jane, had MND, his colleagues decided to support the Association by taking on the Samworth Brothers Charity Challenge. The team of eight runners pledged to raise £4,000 for the Association. After completing many hours of training, both teams crossed the finish line and an amazing total of well over £60,000 was raised.
Our vision could be your legacy More information can be found at: www.mndassociation.org/legacies. Alternatively, call fundraising on 01604 611860 or email legacies@mndassociation.org
Please remember people with MND in your will. www.mndassociation.org
Registered Charity No. 294354
If we are to achieve our vision of a world free from MND, while also providing the best possible care and support for people affected by this cruel disease, then we must continue to raise the substantial income to meet the costs involved. We rely on voluntary donations of which legacies are a vital source, accounting for almost a third of our total income over the last decade. Without legacies, we could not maintain the same high level of investment in research or the breadth and quality of our care and support services. So we are asking for your help, to ensure we can continue our fight against MND, by leaving a legacy to the MND Association in your will.
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Doing something Nic enjoyed seemed a fitting tribute to him. W
HEN Trish Walker’s husband Nic died from MND, she wanted to do something in his memory so set up an MND Association Tribute Fund. To raise money Trish, along with friends Clive and Iau Counsell, and Penny and Arwyn Lloyd Hughes, organised a monthly walk. Now ten years on from his death in 2007, they have raised £28,900. Trish said: “Nic and I were keen walkers, so to raise money in his name by doing something he enjoyed seemed a fitting way to keep his memory alive. Nic died just nine months after receiving his diagnosis of MND. In that time we got married and moved in together. We tried to continue with life and kept things as normal as possible.” “Before his diagnosis, I think Nic had already prepared himself that it was likely to be MND. A librarian, he wanted to work for as long as he possibly could and keep his independence. We continued with our weekends away and enjoyed our last holiday to the Austrian Alps. Right up until his death, he was still able to walk around the house, and was able to speak and swallow. The one thing that gives me some comfort is that he died before
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becoming very disabled. “Nic and I were together for 17 years. After he died I wanted to do something in his memory. Our friends Clive and Iau Counsell, and Arwyn and Penny Lloyd Hughes, suggested we hold regular fundraising walks. Iau and Clive usually organise the harder, longer walks, and I usually organise the more moderate, shorter walk, so for several years now we have done two walks a month. The group is called the NicWalkers. “Nic and I were keen walkers, so to raise money in his name by doing something he enjoyed seemed a fitting way to keep his memory alive.” “After the walk we get back to the cars and give everyone hot drinks and some cake or biscuits, and put out some small envelopes in the hope they will put in a contribution. Everyone nearly always does and thanks to their support we have raised so much in Nic’s memory. “The majority of the walkers now never met Nic. They take part because they enjoy the activity. I think that is what has made this to be the successful fundraiser it is;
Trish and Nic
that the group of people is flexible and that, to take part you don’t need to have known Nic. Setting up a Tribute Fund was easy and it does help to focus on something positive when you have lost someone close. Nic’s mother Jean, has contributed generously to the fund, as have Nic’s former colleagues at St. Fagan’s Museum. For all of us, it has helped to know that our efforts are helping others affected by this awful condition.” For more information about Tribute Funds visit www.mndassociation. org/tributefunds or alternatively, please call 01604 611864.
• Saturday 24 March, Bedford • Sunday 29 April, Kendal • Sunday 20 May, Bristol • Saturday 15 September, Antrim (NI)
2018 regional conferences… Come and meet us
I’m delighted to invite you to one of our forthcoming regional conferences which this year will be held in Bedford, Kendal, Bristol and Antrim (NI), (more details at www.mndassociation.org/regionalconferences). If you are living with MND or are a family member, friend or carer of someone with MND, if you are a volunteer or if you have a personal or professional interest in the MND Association, then these events are for you. Conferences are held regionally to enable as many people as possible to attend. Each event will be broadcast live online giving people unable to attend the opportunity to hear the latest news and take part. Our staff will be attending and look forward to meeting and hearing from you. Sally Light Chief Executive
The programme Each regional conference programme is tailored to the local interests and issues affecting people with MND so content may vary. However, typically they will include the opportunity to hear and ask questions about the latest care services and support available and the most up to date information about research. There will also be an opportunity to sample innovative products and services offered by exhibitors and most importantly, plenty of time to network with other people affected by MND. Costs: There is no fee for people with MND, family members and carers or registered Association Visitors. For other delegates there is a registration fee of £15, which includes lunch and all refreshments. Free parking is available at all venues.
Book your place now You can register to attend in any of the following ways: Web: www.mndassociation.org/regionalconferences Email: conference@mndassociation.org Telephone: 01604 611837 www.mndassociation.org
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17 events in 2017 B
EST friends Dan Hayes and Mat Robson, spent much of 2017 working through many of the challenges listed in our 2017 fundraising Events Diary. The pair have so far raised around £15,000 for the Association, in memory of their friend Gordon Cooney. With the publication of our 2018 Events Diary (inside this edition) it felt like a good time to speak to the pair about their epic fundraising year that saw them complete a London to Paris bike ride, the Great North Swim, the London Marathon, Manchester Marathon, the Great North Run and a Boxing Day Dip. “We inspire and push each other
on. We are a duo. We love running with each other.” Dan said: “When our friend Gordon was alive, he had never done a marathon, but always said he wanted to, so we did the Manchester Marathon in 2016 for him. At one of his last quiz nights he told us that he didn’t think he would be alive to see us cross the finish line, but that he would be there in spirit. Running the marathon, we both felt like he was running beside us the whole way. “Fundraising alongside Mat has been a brilliant experience. Mat is one of the most amazing people I have ever met. We inspire and push each other on. We are a duo. We love running with each other. I think Gordon would think we are idiots, but be proud of us!” Mat said: “After Gordon died we wanted
to continue our fundraising, but even bigger than before. That is when I came up with the idea to do 17 events in 2017. I signed up for the London to Paris bike ride, but Dan said there was no way he was getting on a bike, so he opted for the runs instead. “Our motto is ‘go hard or go home.’ We both get so much joy from fundraising and the support people have given us has been amazing. When things get tough I know Gordon would be laughing and telling us to ‘move our backsides’. There is also a fair bit of competition between the two of us – and that helps us run even faster. I have also decided to volunteer to become an Association Visitor. Seeing the impact of MND has really touched me and has made me determined to get more involved. Dan continues: “Now when people see us running around Barrow in Furness, they recognise us and say ‘well done’ for what we are doing. Gordon was a very well-known and popular man and people have really supported us. We finished off the year as we started it, with a New Year’s Day Dip. We had various outfits to wear depending on how much people sponsor us. The mankini won!” Why not set yourself a challenge for 2018? Our 2018 Events Diary has even more ideas and events to suit all ages and abilities, from a variety of runs and walks to tougher challenges across the UK and abroad. Last year our fundraisers raised an incredible £3.2 million for the Association. Let’s try and raise even more in 2018.
15 months and £153,000
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racey Robson, and her tenacious team of six local mums, organised the MND Glitterball at the Amex Stadium in Brighton. The ball, was the result of 15 months commitment and dedication by the team. Over 400 guests were welcomed by ITV newsreader Natasha Kaplinsky, followed by a game of ‘Heads and Tails’ compered by Piers Morgan. Speaking after the event Good Morning Britain Piers Morgan said: “It was a fantastically successful night that raised a great six-figure sum for the Association and was also hugely entertaining and enjoyable for all the guests. The only potential negative came during the ‘Heads and Tails’ competition, which I ran, when my Mother reached the final two and everyone
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assumed I must be cheating in some way. Fortunately, she lost! So bad news for my Mother, good news for what’s left of my reputation. Congratulations to all the organisers on a tremendous evening.” The team had set themselves an ambitious fundraising target of £100,000 and were thrilled to have actually achieved £153,000. Summing up the year, Tracey Robson said: “It has been a long but very enjoyable year of fundraising. Seeing the amount that we have raised makes me feel very proud of every single person that supported this campaign. “Charlotte Hands, Charlie Tomlinson, Kate Rowe-Ham, Emily Hendon, Anna Summers and Alicia Drummond and myself created this amazing team. They are the reason that
this year of fundraising was so successful. Their hard work, determination and willingness to succeed was phenomenal. A truly amazing community spirit and desire to make things better for MND sufferers and their families. We know that this money will make a difference and that’s exactly what we set out to do – make a difference.”
branchesandgroups Sad news
We are sad to report the deaths of three much valued and loved branch founding members. Our thoughts are with their family and friends during this difficult time.
Pat Rutter was the co-founder and leader of the Cleveland Group. Pat had volunteered for the Association for over 30 years, after a close friend died of MND. Apart from countless branch roles, she was also one of our early Association Visitors.
Carol McGowan founded the Merseyside Branch with her mother Stella, after losing her dad to MND. Carol served many roles within Association including a trustee, chair and treasurer. Carol died from MND in September.
Kitty Mounstephen was a founding member of the West Sussex South Branch, chair of the branch and trustee. Kitty volunteered for over 30 years and, like Pat was one of our earliest Association Visitors.
The pain in the ALS A welcome gift Peter and Kate Inchly went to the Woodland Hospital in Kettering to receive a cheque, following the hospital’s adoption of the Northamptonshire Branch as its charity of the year. A number of events were held, raising over £2,500.
Former Cheltenham and Worcester rugby player Mike Crisp, who is living with MND held a golf day, called The Pain in the ALS. It raised over £9,000 for the Association and the Gloucestershire Branch. The evening was hosted by England and British Lion Gareth Chilcott, with the auction run by former Gloucester player Rob York of AMS Auctions.
Running for Grandad Emily Jade Thompson ran her first marathon to raise money for the Northern Ireland Branch in honour of her grandad Samuel Thompson. Emma said: “My Grandad was the most energetic person I knew, he was constantly moving and on the go. I decided to run my first marathon to raise awareness of MND and to provide funds to help support patients and families affected.”
Children’s police challenge The Hull and East Yorkshire Group were presented with a cheque of £1,400 by five children who raised the money through an initiative run by The Humberside Police to challenge young people to get involved with their communities, using their spare time to make a difference.
Musical fundraiser Music by Barnstaple Jubilate Choir formed part of an evening that raised an amazing £2,150 for the North West Devon Group.
A family affair
I did it my way
Three generations of the same family have so far raised £5,500 following Brian Algar’s diagnosis of MND. Rachel Ritchie said: “As a family we wanted to give something back. I embarked on a sky dive, something that filled me with terror. My daughter Hannah, ran her first half marathon in Blackpool and my Dad walked three miles along Llandudno sea front alongside supporters of the Clwyd Branch. Together as a family we have raised £5,500.”
West Surrey Branch member Eamonn Cann, who is living with MND, performed his tribute to Sinatra, raising £350 for the branch. Chairman Bob Hodgson said: “It’s hard work for him to sing three sets through the afternoon and evening, so we’re incredibly grateful to him for just refusing to give up – but please, Eamonn, take it a bit easy now – you’ve done enough!”
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thankyou Share your pictures at www.facebook.com/mndassociation Rider Cup Challenge: A love of cycling was combined with a love of golf with the first ever Rider Cup Challenge. The event involved cycling to 16 golf courses in four counties to raise funds for the MND Association and Sue Ryder St John’s Hospice. There were a lot of tired legs at the end of the day, but the event raised a fantastic £13,600 for the MND Association.
Running in Tony’s footsteps: Before he was diagnosed with MND, Tony Barry took part in 118 marathons, with his favourite being Nottingham’s Robin Hood Marathon. So, this year his daughter Marie Watson, took part in his honour. She completed the course in 3 hours 59 minutes and raised a fantastic £1,200 for the Nottinghamshire Branch.
Braving the Dart: Kiri Pearce completed a 10k swim in the River Dart in memory of her grandma. Kiri completed the swim in 2 hours and 16 minutes, raising wonderful £660 for the Association.
Prosecco and tutus: Prosecco (for the adults!) and tutus provided a fun twist to Rebecca Dawson’s charity Zumbathon. A wonderful £785 was raised for the Janice Guest Tribute Fund, set up by Janice’s daughter Erica Mansfield in 2010. It has so far generated an amazing £28,000 for the Association.
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Chaos races: Running event organiser White Star Running, has dedicated its ‘Chaos Races’ to raising money for MND. Inspired by volunteer running group ‘#RunMND’, the races which include fun challenges at check points along the route, have raised an amazing £2,400.
For my mum: 14 year old Harry smashed the Brighton 10K and raised an amazing £2,500. Before the race Harry said: “My beautiful Mum sadly died from MND. I want to raise money for the MND Association because I hope that one day others won’t have to endure this heart-breaking disease. I hope to do my Mother proud.”
Joining Forces: The RAF Wyton Area Voluntary Band joined forces with the The Band of the Royal Air Force College to hold a special concert at Peterborough Cathedral. The concert raised a brilliant £1,700.
In honour of Nan: Carmel Bennett did the Birmingham Half Marathon in honour of her Nan who is living with MND. Carmel completed the half in just over three hours raising a brilliant £300. Raising a glass: After reading about a fundraising cocktail crawl in Thumb Print, Debbie Darke decided to organise one herself and approached the local pubs in her village. Every pub in the village took part with entertainment and a signature cocktail for MND. Pubs were covered in our MND Association blue and orange and were packed with people in MND t-shirts. Debbie sold 236 MND Association wristbands for donations of £15 each, giving people access to discounted cocktails. An amazing £5,300 was raised in memory of Charlie Marden, Debbie’s dad.
I am Spartan: Brothers Sarbjit, Sukhdev, Manvir and Manjora Singh Bisla all took part in the Spartan race, raising £800 in memory of their papa, Jee Malkit Singh who died from MND in 2008.
Hair today, gone tomorrow: Mother and daughter, Michelle and Rachel Weir cut their very long hair and raised over £600 for the Association. They wanted to raise the money in honour of Rachel’s Great Grandma who had MND.
Charge of the Light Brigade: When Alan Loveland was diagnosed with MND his family and friends wanted to fundraise for the Association. Alan had a long career in the military, so 34 veterans, friends and family cycled 50 miles through the New Forest, raising an incredible £9,400 for the Association. As his regiment was made famous by the Charge of the Light Brigade poem by Tennyson, Alan is pictured holding a lance, as he started the cyclists off on their ‘charge’ through the New Forest.
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yourletters If you have something you would like to share with other members of our MND family, we would love to hear from you. Letters, which must include your full address, can be sent to Your letters, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email to editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.
MND may take away my body, but not my identity
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esterday I decided to give up something, not for Lent, but permanently. Since this damned disease has taken hold, I’ve got used to abandoning activities. I gave up skiing two years ago. I gave up rollerblading three years ago. But giving up the flute hurt a little bit more. The first two had been activities; the flute was somehow more part of my soul. When I was travelling for three years in my late 20s, it was always with me, in my backpack. It became a way of both communicating and entertaining. On my second date with my wife Ilana, I played a piece from Orpheus in the Underworld and it became our song. Playing was a way of expressing some of the facets of my personality that I had difficulty in doing otherwise; the flute was one way of conveying a kind of tenderness and softness. At times I would try more difficult or faster pieces, but I often returned to more soulful passages. In the past couple of weeks it had become more difficult to play long pieces. I could not hold the flute up for more than a minute or two, despite all efforts to prop my arms up; my fingers stiffened as soon as my arms began to give out. It was clear that I would have to give up; another activity to consign to the ‘I used to’ pile, damn it. This disease is relentless. At this stage in its progression, I am becoming an expert in how to manage loss. I think that’s the main skill needed just now. Yet, although I wouldn’t recommend MND to anyone, I do feel that in some senses I am lucky. Partly that’s because my particular version of it means that I’m living longer than most with the disease. And
diarydates
that has given me time to adapt to the illness and to follow some advice that I was given: “Don’t dwell on what you can’t do; concentrate on what you can do”. And so I have not mourned the end of my skiing days or the end of my rollerblading, but rather regarded them as activities that I once did and which I enjoyed. I don’t want my memories to be tinged with frustration. I have tried to replace each former activity with a new interest, such as writing or singing. And it is singing that allows me to continue some form of creativity in music, with the benefit that it is a meeting and joining in with others, as well as damned good therapy. The medical professionals say that I am taking this illness very positively and some even that my wife Ilana and I are inspiring. I have a mixture of feelings about this. Firstly, I know that I could wallow in selfpity; until I was about 20, I had a tendency do so but, through the remark of a friend realised it wasn’t doing me – or anybody else – any good. I know that my mind and my senses will continue to operate whatever is happening to my muscles, and frankly I need to keep my sanity through that. I might as well accept the disease and its progression and make the best of my time; it may take over my body but not my identity – I am still above all Crispin and Grandpa. I have found that, almost without my consciously willing it, I have begun to live more for the day. My priorities have changed; friendships and love come top of the pile. The “oughts”, “shoulds”, and “musts” have gone down to the bottom, along with the need to achieve. I’m not saying there is no frustration,
Crispin Ellison
there is. But it is often the little things: the inability to scrape the last of the marmalade out of the jar, to reach that item at the back of the fridge, to put my jacket or trousers on without help, or to avoid scraping paint off the skirting board with my chair. Mostly each day I feel a mixture of resignation, some sadness and yet a sense of curiosity. A while ago I was given some excellent advice: ‘Never criticise something unless you can suggest an alternative’. I have found that in following that advice, I have always had to think of other ways of doing things before opening my mouth. Now I need that skill more than ever. Further, I have been lucky that the major successes in the last twenty years of my life have often been through collaboration with others. It means, I think, that I am more ready to ask for help and enjoy receiving help. In fact I’m incredibly touched when people do help me, and sometimes moved to tears. I’m not sure why that might be, but it may
The Big Half: London, 4 March 2018 • Regional Conference: Wyboston Lakes, Bedford, 24 March 2018
• London Landmarks Half Marathon: 25 March 2018 • Brighton Marathon: 15 April 2018 • Annual Conference and AGM: 14 July 2018 • Great North Run: 9 September 2018 • Walk to d’feet MND: All year round
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aboutus have something to do with the way I was brought up and the boarding school education I had. For much of my life I believed that I had to manage completely on my own and developed a range of skills, such as DIY, accordingly. Only a long while after that did I begin to realise that often it was much better to engage people with experience and enjoy seeing how things really should be done. And I have been open with family and friends. I have not hidden my condition. That has brought rewards. Two friends lead the singing group I attend. Early on I told them of my diagnosis. They met Ilana shortly afterwards and a week later told me: “We’ve been thinking about you both and your situation, and we’d like to promise you that we will be with you all the way.” That promise, that commitment (which others may also share but have left unspoken) was a major factor in giving me the confidence to face the disease and to live with it, as opposed to, say, taking fright and booking a one-way flight to Switzerland. On a day-to-day basis, one of the compensatory joys of living with this condition is being cared for by a variety of people: by occupational therapists, my counsellor, physiotherapists, my Pilates teacher, my masseuse; and closer to home, by Ilana, by my wonderful stepdaughters and their families and many friends who are not only happy to offer help, but, as importantly, to be asked. And, I should not forget, the local MND support group we attend every six weeks or so. Some of those diagnosed with MND feel so horrified by what is happening to them that the idea of being amongst others with the disease is anathema. We had had good experience of support groups in other connections and braved this one; we were warmly welcomed and supported and have in due course been able to help others too. So I have many reasons to keep going as long as I can. As I lose physical ability, I’ll try to find ways to develop new ways to express myself, not least through writing my life story for my grandchildren, as well as individual pieces such as this; and simply taking more time in my retirement to treasure what I have. I don’t think I’m particularly saintly or brave; nor is there some higher principle or belief system involved; I just want to live the time left in a fulfilling way if I’m to keep sane – and to enjoy the exchange of love with those around me. Crispin Ellison
My garden of memories As I look out and admire my garden I’m reminded of times gone by It’s bursting with so many memories And so pleasing to anyone’s eye Flowers and plants bought for special occasions Others from friends far and near Some reminiscent of holidays Stirring a few happy tears I don’t just grow plants – I grow memories And they unlike plants never die They’re eternal – they live on forever And can’t be destroyed if you try I love to be out in my garden As I tend it I quite often find I can drift off to countrywide places And think of the happiest times Some where the children were tiny Some now they are both fully grown And now I plant things with small people in mind Cause my children have kids of their own There’s the hedgehog, the squirrel and rabbit That I’ve hidden amongst shrubs and trees They’re known as Henry, Cyril and Reggie Cause these names they remember with ease Now there’s a patch at the back of the garden A den where they all love to play In a world far away from the adults It’s entertaining to hear what they say Yes the garden may change with the seasons Some plants are reborn and some die
The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. As a charity we rely on voluntary donations. Our vision is a world free from MND.
Website www.mndassociation.org
Social media Online forum A place for people affected by MND to share experiences and support each other. http://forum.mndassociation.org Facebook www.facebook.com/ mndassociation Twitter @mndassoc
MND Connect Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.
0808 802 6262 mndconnect@mndassociation.org Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org
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But for me it will live on forever This memory garden of mine
telephone: 01604 250505
Patricia Mary Nutton
website: www.mndassociation.org email: enquiries@mndassociation.org www.mndassociation.org
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