Issuu

The magazine of the Motor Neurone Disease Association

Winter 2020

The world unites to fight MND

For mND

GAZE COMPATIBLE

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, part of the

family

4 and 5

Bringing the world together A special report from the 30th International Symposium on ALS/MND

6 and 7

What does the General Election result mean to you? The MND Association’s Alex Massey spells out the Association’s priorities for Boris Johnson’s new Government.

New clinical trial launches in the UK Find out more about how you could get involved

12 and 13

‘MND was like an earthquake in our lives’ Hilary Smith shares her story with readers of Thumb Print

‘Let’s kick-start a conversation about the future’ Your chance to shape the Association’s strategy for 2022 and beyond

18 and 19

Meet Penni-May – our newest MND Buddy! Don’t miss our new pages for younger readers

38 and 39 Your letters

A selection of your emails and letters

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Reg. charity number 294354. On the cover: The first global Walk to d'feet MND which took place at the International Symposium on ALS/MND in Perth last December.

Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch.

welcome… As we begin a new year – and a new decade – we also turn the page on a new chapter in our Association’s history. After marking the Association’s 40th anniversary in 2019, the New Year brings with it the chance to look ahead to the future with a growing sense of optimism. In December, I was fortunate to be able to take part in the Association’s International Symposium on ALS/MND which was held in Perth, Western Australia. This year, more than 800 of the world’s leading researchers from 33 countries took part in the event, many of them travelling across the world just to be there. While continents and oceans may divide them, for three days these brilliant minds were all brought together in one place with one goal in mind – a world free from MND. It was hugely encouraging to hear about the great progress being made by researchers around the world, particularly when it comes to developing possible treatments through gene therapy and clinical trials. I was also heartened to see the growing range of research into the best ways to provide care for people living with MND and their families, something which I know will be of interest to many of you. There’s more information about the Symposium on pages 4 and 5 and even more detail on our Periodic Table of MND Research which is available at www.mndassociation.org/symplive. One moment from my time in Perth, which I think will stay with me forever, was the global Walk to d’feet which took place along the banks of the city’s Swan River. To see so many people from all over the world, joining together with people living with MND to raise awareness of this devastating disease, was not only an incredible sight, but also a powerful reminder that people living with MND – wherever they are in the world – are not alone. Thank you for everything you do to support our work. Together, I know we will continue to make a difference throughout 2020 and beyond.

The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2020.

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

Sally Light Chief Executive

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‘New knowledge, exciting

ORE than 800 researchers from 33 countries around the world took part in the MND Association’s 30th International Symposium on ALS/MND in December. Held in Perth, Western Australia and organised in partnership with MND Western Australia and MND Australia, the three-day event saw some of the world’s leading experts in MND research come together to discuss their latest findings. The MND Association’s Director of Research Development, Dr Brian Dickie, said the event had been a huge success and that there was a real sense of optimism about the future. He said: “It was a very busy three days full of new knowledge, exciting ideas

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and emerging collaborations. The event is all about great science and joining up the dots because we know that together we can make a difference.” Among the important topics discussed during the event were: Gene therapy Researchers believe we are now entering the era of gene therapy for MND. This is where a faulty/missing inherited gene is altered to reflect the version seen in the people who are not predisposed to the disease. This is expected to alleviate the symptoms and slow the progression of MND. Results of a technique used to silence the faulty SOD1 gene (antisense oligonucleotide called Tofersen), presented by Dr

Timothy Miller, seems promising. Phase 3 of this trial, VALOR, is currently active and recruiting. Care research While much is being done in the laboratory to find a cure for MND, the Symposium also provides an opportunity to share work aimed at improving care and support. This included a talk on how researchers in the UK are developing the MiND Toolkit to provide structured recommendations/guidelines for the management of cognitive or behavioural changes. Another talk explained the use of telehealth – how technology can alleviate the impact distance might have on care.

ideas and real optimism’ Other highlights from Perth 2019 Inaugural Global Walk to d’feet MND More than 400 people – all wearing their country’s Association T-shirts – took part in the first ever Global Walk to d’feet MND at this year’s Symposium. People living with MND were joined by scientists and delegates from around the world as they made their way along the 5km course on the banks of Perth’s Swan River. Among those taking part was the Association’s Chief Executive, Sally Light. She said: “It was an amazing experience to be part of it. To see everyone together, all with the same aim of finding a cure for this terrible disease was quite incredible and very moving.” Allied Professionals Forum The International Alliance of ALS/MND Associations hosts a oneday Allied Professionals Forum each year specifically for health and social care professionals to explore ways to improve the clinical management of MND. During the event, Rachel Boothman, the Association’s Head of Education and Information jointly-hosted a session which provided more information about how to discuss end of life care. ALS/MND Connect (previously called Ask the Experts) Each year an ALS/MND Connect session is held specifically for people living with MND to find out more about the latest MND research. This year’s session was chaired by Professor Merrilee Needham (Fiona Stanley Hospital, Australia) who was joined by Professor Matthew Kiernan (University of Sydney, Australia), Professor Ammar Al Chalabi (King’s MND Care and Research Centre, United Kingdom), and Professor Leonard Van den Berg (University Medical Center Utrecht, Netherlands). The session was also live-streamed on Facebook, so anyone from around the world could take part. Awards Various awards were presented during the opening and closing sessions at the 30th International Symposium and at the International Alliance of ALS/MND Associations meetings. The Humanitarian Award is given annually to recognise an individual or group whose work has made a contribution of international significance to people affected by ALS/MND. This year the award was presented to Dario Ryba, Argentina, President of the ALS Association of Argentina (Asociacion ELA Argentina). The Allied Health Professional Award is presented by the International Alliance of ALS/MND Associations to recognise an individual committed to providing exceptional care to people with ALS/MND. The recipient of this year’s award was Rachael Marsden from the Oxford MND Care Centre. Rachael couldn’t be at the APF as she was taking part TandemWoW, cycling around

the world to raise money for the MND Association. Professor Martin Turner accepted the award on behalf of Rachael, who dedicated the award to her mother who died shortly before the Symposium. The Paulo Gontijo Award recognises young researchers who have dedicated their scientific work to investigate the causes and treatment of MND. This year, the 11th Paulo Gontijo Award recognised UK-based MND scientist, Dr Laura Ferraiuolo, from the Sheffield Institute of Translational Neuroscience (SITraN), for her investigation into the role of astrocyte-secreted extravesicular vesicles as well as for her continuous dedication to understand and find a treatment for MND. Dr Ferraiuolo presented the findings of her winning paper at the Symposium. The first annual Healey Center Award for Innovation in ALS/ MND recognised exceptional achievements for an individual or team in scientific advances in ALS from around the world. It was awarded to the team developing the Toferson antisense oligonucleotide therapy in SOD1-mediated MND during the joint closing session of the Symposium. Team members include researchers from academia and industry – Timothy Miller, (Washington University School of Medicine), Don Cleveland, (University of California), Richard Smith, (Center of Neurological Study in La Jolla, California), Toby Ferguson, (Biogen) and Frank Bennett, (Ionis Pharmaceuticals). To celebrate the high quality of clinical and biomedical posters presented by early-career researchers, the MND Association presents prizes each year. Ruben van Eijk from University Medical Centre Utrecht, Netherlands, won the Clinical poster prize this year for his work on ‘Optimising the ALSFRS-R as a clinical trial endpoint’. There were two Biomedical poster prize winners. Laura Reale, University of Tasmania, Australia, won for her poster on ‘Does mislocalised TDP-43 in excitatory neurons of the motor cortex cause ALS-like pathology in the spinal cord?’ and Nora Markus, University of Sheffield on ‘Artificial Intelligence-led drug discovery identifies Nilotinib as a lead compound for ALS’. Innovative clinical trial design First to present in the clinical trials session were Sabrina Paganoni and Ben Saville (USA) who discussed the Healey ALS Platform Trial which aims to accelerate the process of drug development and the path for effective treatment by testing multiple drugs simultaneously and adaptively as has been done in cancer trials and other diseases. Incredibly, it has only been one year from concept to launch of this large-scale trial, with enrolment due to begin in early 2020 across 54 sites in the US. With multiple drugs tested at once, shared controls would be used across regimens meaning the platform trial would cut the number of placebo participants down to a third. The trial will continue to test more interventions until cures are found for all people with ALS.

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We know the result, but Just before Christmas the first General Election to be held in December since 1923 resulted in the Conservative party winning a significant majority in Westminster. But what does this mean for people living with and affected by MND across England, Wales and Northern Ireland? The Association’s Policy Manager, Alex Massey explains.

HE result of the General Election was notable for handing the governing party a large majority. Except for the period between 2015 and 2017 when it had a small majority, the Conservative party has relied on the support of other parties to govern since the formation of the coalition Government in 2010. Now, with a comfortable majority of 80 seats, the Government is likely to have little difficulty passing legislation through the House of Commons. But what will this mean for the Association’s policy priorities? Scrap 6 Months: The Association will continue with its Scrap 6 Months campaign, which calls on the Government to ensure that terminally ill people can access benefits quickly and easily by reforming the Special Rules for Terminal Illness. In 2019, the Department for Work and Pensions (DWP) announced a review of how well the benefits system works for terminally ill people. Following the re-election of the Conservative Government, the current DWP ministerial team is expected to stay in place, including the Secretary of State, Therese Coffey, and the Minister for Disabled People, Justin Tomlinson. We therefore expect the review process to continue as planned. We intend to push for the DWP to progress the review as quickly as possible, and we will engage closely with the process to call for significant reform that delivers meaningful change for people living with MND. Social care and carers: Social care in the UK represents a major unresolved policy question for the new Government. The system continues to struggle with under-funding and inadequate capacity, meaning that at least 1.5 million people do not get the care they need. As a result, some people find themselves having to sell their homes to pay for care, while voluntary and family carers take on a huge unpaid care burden with little or no support. Theresa May’s Government repeatedly promised to bring forward social care reform proposals but failed to deliver. However, as the new Government has a large parliamentary majority, it is in a much better position to pass legislation for reform. In his very first speech after replacing Theresa May as prime minister, Boris Johnson promised ‘a clear plan to fix the crisis in social care once and for all.’ The MND Association, alongside our partners in the Care and Support Alliance, will push for comprehensive reform to put social care on a sustainable long-term footing, and ensure everyone receives the care they need without falling into financial hardship. We will also call upon the Government to recognise the enormous contribution made by unpaid carers and ensure they get the support they need, including an increase to Carer’s Allowance.

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Scrap 6 Months is at the top of our priuorities for the new Government

Accessible housing: The UK’s accessible housing crisis has not yet received the attention it deserves from Government. Demographic change means that an ever-increasing number of people require accessible housing in order to maintain their independence, health and wellbeing for as long as possible. Without decisive action from Government, the gap between the population’s accessibility needs and the current housing stock will only continue to grow. The Government has not yet responded to the findings of the independent review of Disabled Facilities Grants – which provide funding for home adaptations – which it commissioned last year. It is essential the Government now takes decisive action on this issue. In 2020, the MND Association will launch its Act to Adapt campaign, calling upon local and national Government to take action to improve the delivery of home adaptations and ensure a supply of new accessible homes. NHS: The Queen’s Speech on 19 December repeated the Conservative manifesto pledges to enshrine in law a new funding settlement for the NHS, remove hospital parking charges for those ‘in greatest need’ and create a new visa programme for qualified doctors and nurses. However, the NHS faces ongoing challenges including significant workforce pressures and long-term funding challenges in light of growing demand for its services, driven in part by demographic changes across the UK. The MND Association will continue to engage with NHS bodies and the Department of Health and Social Care to drive forward improvements in NHS services, including arguing for increased focus on commissioning integrated and coordinated healthcare services for people living with MND.

what happens next? Campaign is our most successful yet

URING the general election campaign, the Association joined forces with Marie Curie to ask all candidates to pledge their support for our Scrap 6 Months campaign if they were elected to Parliament. The campaign aims to reform the definition of a terminal illness so that everyone who receives a terminal diagnosis can access benefits quickly and sensitively. Currently only those with a life expectancy of six months or less are able to do so. We are incredibly grateful to everyone who supported the campaign and asked their candidates to pledge to Scrap 6 Months. In just under four weeks, more than 12,000 emails were sent by our supporters. More than 800 candidates pledged their support and 77 are now sitting MPs. The next stage of the Scrap 6 Months campaign will focus on ensuring the review of how the benefits system works for terminally ill people is prioritised by the new Government. The review was announced by the Department for Work and Pensions in July 2019.

Our top priorities for the new Government are:

Association’s thank you to Madeleine

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ADELEINE Moon MP, who chaired the All-Party Parliamentary Group on MND (APPG) for six years, lost her seat in the general election. Madeleine’s husband died from MND in 2015 and she has been a passionate and dedicated champion of the rights of people affected by MND in Parliament ever since. During her time as Chair, Madeleine became heavily involved in access to communication support. The APPG launched an urgent inquiry to gather evidence on the extent of the problem, taking submissions from people with MND, their families, speech and language therapists and commissioners. The report from the inquiry Condemned to Silence and our campaign Don’t Let Me Die Without A Voice were instrumental in improving access to communication support for people with MND. She also championed welfare benefits. Under Madeleine’s leadership, the APPG met regularly with the Minister for Disabled People, Health and Work and in 2017 launched an inquiry into Personal Independence Payment (PIP). The report PIP and MND: Is the Benefits System failing people with MND? was published at a joint parliamentary reception with the Association in October 2017. A new chair for the All-Party Parliamentary Group on MND is expected to be announced soon.

Scrap the 6-month definition of a terminal illness so that all terminally ill people can access welfare benefits quickly and sensitively Urgently develop a fair and sustainable funding solution to the social care crisis, covering both working-age adults and older people Provide more funding for accessible homes to be built and more funding for home adaptations

Prioritise the needs of unpaid carers and ensure they get the support they deserve

Develop a funded MND research strategy, to help accelerate progress

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Picture: Mark Duffy

OR Katy Styles championing the needs of people affected by MND and Kennedy’s Disease and those who care for them has become something of a way of life. In 2010, Katy’s husband Mark was diagnosed with Kennedy’s Disease and since then Katy has become his fulltime carer. But it was her own passion for campaigning and her desire to help those facing similar challenges to her own which led to her becoming a trustee of the MND Association in 2017.

‘Whatever your experience, the Association needs you’ She said: “When Mark was diagnosed with Kennedy’s Disease we were signposted to the Association and some information was available on its website. There was so little known about the disease at the time, but it was good to know there was support out there. “We started to fundraise for the East Kent Group and then Mark and I were invited to sit on the group’s committee. It continued from there.” “It’s such an exciting time for the Association and I would encourage anyone who is living with, or affected by MND, to think seriously about becoming a trustee.”

It wasn’t long before Katy started campaigning for the rights of people living with MND and Kennedy’s Disease, most notably as a General Election Campaigns Champion for the Don’t Let Me Die Without A Voice campaign in 2015. She has also been heavily involved in the Association’s work to highlight the financial support disabled people and their carers need, often drawing on her own personal experience to encourage decision-makers to sit up and take notice. Earlier this year, Katy won the UK Parliament Award in recognition of her work with the We Care campaign which she founded to highlight the needs of unpaid carers.

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Katy Styles, who is an avid campaigner for carers and people affected by MND and Kennedy’s Disease, pictured in Parliament

Katy says she is now determined to use her experience to help drive the work of the Association forward. She said: “I’m not going to lie – being a full-time carer, a campaigner and a trustee is not easy. It’s a huge commitment, but it is one of the greatest privileges of my life. “Having that voice on the Board is vital. Explaining the trials and tribulations of life as a carer is so important, but the Board also needs more people who are living with MND. The Association is sympathetic to the challenges and I try to utilise the time I have as best I can, for example, if Mark is resting I will answer some emails, or if I’m on a train I’ll go through some papers. “It’s such an exciting time for the Association and I would encourage anyone who is living with, or affected by MND, to think seriously about becoming a trustee. If you’re attending a regional conference, ask the trustees who are there or come along to the trustee information day in March. Whatever your experience is, the Association needs you.”

How can I become a trustee? You must already be a member of the Association and be nominated and seconded by existing members. Nominations for the election in June are now being accepted. You can apply by completing the form which can be found in this edition of Thumb Print or you can visit www.mndassociation.org/ trustee2020. You will be asked to give some information about your knowledge and your experience of MND. The closing date for nominations is 17 April. Our members then vote and successful candidates are informed of the result prior to the Association’s AGM in July. Our new trustees will take up office at the AGM on 11 July.

Working together to shape our future

ITH the Association’s 40th anniversary year now behind us, the sights of the whole Association are now very firmly set upon the future. Our mission remains the same as it has always been – to help provide the best care and support we can to people living with MND and their families, while investing in world-class research to give us the chance of developing new treatments and, one day, a cure. We are also committed to campaigning for the rights of all those affected by MND while raising awareness of the disease and the needs of those who have it.

We are focussed on accessibility, inclusivity and flexibility and our sincere hope is that more people living with MND – who remain at the very heart of everything we do – will become much more involved in our work in the months and years to come. One of the ways you can get involved today is by reading the article on page 17 about plans for our new strategy – a road map of our work from 2021 and beyond. The first step is for us to listen to the views and opinions of our members, particularly when it comes to setting out what the Association’s priorities should be. If you do have a moment, please take the time to complete the postcard within this edition of Thumb Print and let us know what you think. I would also urge you to read the interview with Katy Styles on the facing page in which she talks about her experience as a trustee and a carer for her husband Mark, who is living with Kennedy’s Disease. With trustee elections coming up in June we are looking for nominations from across the MND community and particularly from people living with MND. If you are interested in finding out more about this important and incredibly rewarding role an information day is being held on Thursday, 19 March. I look forward to seeing you there. by Richard Coleman, chair of the Board of Trustees

Motor Neurone Disease Association Nominations open 23 January – 17 April Richard Coleman, chair of the Board of Trustees

Thanks to the hard work and dedication of so many, we are making good and steady progress in all areas of our work and particularly in MND research, where exciting developments continue being made by researchers both at home and abroad. At the same time, we are busy preparing the Association for the next stage of its fight against MND. A big part of this is the move to a fit-for-purpose office and I hope, by the time you read this, our staff will already be settling into their new home. Moving to new offices gives us the chance to embrace and make the most of new technology, which, in turn, will allow us to respond better to those who need our help. Our staff will also be able to work more collaboratively and efficiently with their colleagues.

If you’re passionate about improving the lives of those affected by motor neurone disease, you could help guide the Association’s future. From 23 January, we begin the process of inviting members to nominate candidates for election to the MND Association’s Board of Trustees (see leaflet enclosed in this issue). Elections take place in June and successful candidates are appointed at the AGM and Annual Conference which will be held on Saturday 11 July.

Trustee information day 19 March If you would like to find out more about this important and rewarding voluntary position, you can attend a no obligation, informal, trustee information day on Thursday 19 March. To find out more, please email our governance officer at governance@mndassociation.org

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Trial into possible new MND treatment launches in the UK

N important clinical trial into the use of a chemical called TUDCA as a potential treatment for MND is now recruiting participants from the UK. The trial involves the use of Tauroursodeoxycholic acid, or TUDCA for short, a substance which occours naturally in the body. It works by camouflaging a stress chemical that triggers the death of a distressed or damaged cell and is currently licenced as a treatment for liver disease. It is now thought that TUDCA may have potential as a treatment for MND due to its ability to act as an antioxidant, protecting against neurological damage – which could prevent or significantly delay the death of motor neurones in people with MND. The clinical trial is being made possible thanks to the work of TUDCA-ALS, a European Consortium involving researchers from seven countries across Europe. The Consortium aims to find a new treatment to slow down the progression of ALS/ MND by conducting a Phase 3 clinical trial to investigate TUDCA’s safety and effectiveness. A total of 440 people with MND will be recruited across 26 centres in Europe including the UK and Ireland.

The TUDCA-ALS Consortium after the launch meeting in 2018 with the Association’s Research Programmes and Partnerships Manager, Kirsten Kelly, in the centre

Using standard measures of ALS/MND progression, researchers will be looking for a slower rate of decline in participants’ physical mobility, activities of daily living and independence, eating and drinking abilities, communication, pain and emotional functioning. Biological samples, including blood and cerebrospinal fluid, will also be taken to identify unique biological signatures – known as biomarkers. Checking for biomarkers is now a standard part of many clinical trials and can help researchers monitor progression of the disease and potentially lead to a speedier diagnosis. TUDCA-ALS will also look at other biological variants to determine whether there are some differences that allow patients to respond better – or indeed worse – to the treatment. This could be used to move away from a ‘one size fits all’ type of therapy to more ‘personalised medicine’. If you are interested in taking part in the trial, you will need to be within 18 months of the onset of symptoms and have no difficulties swallowing. The first step will be to discuss your options with your neurologist, and if you are eligible to take part, you will be referred to one of the centres in Sheffield, Preston, Liverpool, Plymouth, Salford, Stoke or Dublin. You can also find out more information by using the following links: Information sheet DB – TUDCA-ALS: bit.ly/TUDCA-ALS Take part in TUDCA-ALS: bit.ly/TUDCA-ALS-takepart MND Research Blog: bit.ly/TUDCA-ALS-blog TUDCA website: bit.ly/TUDCA-ALS-website

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Thinking outside the box when it comes to new trials

RADITIONALLY clinical trials are well-structured and well-designed experiments, with strict rules about who can take part – something which is vital if the results are to be considered reliable. But these constraints also mean that certain clinical trials remain out of reach to most people living with MND, and the long wait for results – which can often take months, or even years – is just not practical. One neurologist aiming to change all that is Dr Richard Bedlack, Professor of Neurology at Duke University in North Carolina, whose project ALSUntangled is partly funded by the MND Association. Dr Bedlack is determined to think outside the box when it comes to the way in which clinical trials are carried out, while maintaining their reliability. Because Dr Bedlack’s trials are trying to find ways in which to stop the progression of MND, or even bring about a reversal, they are open to everyone regardless of their symptoms. All participants are given the trial treatment, and taught how to effectively selfreport their progress and upload it on to a publicly available database called PatientsLikeMe – meaning results are available in real time. Dr Bedlack has three new trials that have either begun or will begin very shortly – one using a spice, another using a banned substance and the third using a filter. Can a spice change the gut microbiome of people with MND? Exploring the link between our gut and our general health is becoming increasingly popular and researchers are now looking closely into the association between our gut microbiome and neurological conditions such as motor neurone disease. Dr Bedlack’s first study is aiming to assess the effect of a form of the spice curcumin, called therocurmin, on the gut microbiome of 50 people

Dr Richard Bedlack

with MND. Dr Bedlack will compare their microbiomes with those of healthy volunteers to see how they differ. He will also see if there is a difference between the microbiomes of those with a fast progression and those whose condition is more stable. He will then assess if, after treatment with theracurmin, there is a change to the microbiome and if this is associated with the changes they are experiencing. Theracurmin has been used by five patients that Dr Bedlack has identified as having an apparent reversal of their MND. Is this due to theracurmin? Dr Bedlack hopes this trial will answer that question. Can a banned substance improve muscle strength? The second trial is looking at clenbuturol, a steroid-like drug that has been used as a performance enhancer by professional athletes due to its perceived ability to make muscles bigger and stronger. Twenty-five people with MND will be given the drug with the aim of seeing improvements in the ALS Functional Rating Scale and forced vital capacity scores during, and after, treatment.

Can a filter be used to remove toxic chemicals from spinal fluid? The final study will look to see if a machine that filters cerebrospinal fluid (CSF) can be used to filter out a toxic chemical, called CHIT-1, from the spinal fluid of people with MND. When the CSF of people living with MND is introduced to the support cells of motor neurons – the astrocytes and microglia – it produces an inflammatory response, which is one of the markers of MND. Dr Bedlack will attempt to filter out the CHIT-1 from CSF samples taken from volunteers and biobanks, using a machine called Minnetronix. Filtered and unfiltered CSF will be injected into the spinal canals of rats to see if they go on to develop MND-like symptoms. This will hopefully pave the way for a small pilot trial to test spinal fluid filtration in human patients. Although these trials are only taking place in the USA, any positive results will have wider implications for the MND community across the world. Their design may also help shape other clinical trials in the future. You can listen to Dr Bedlack talk about his work, including these trials, in this webinar: Postcards from the Edge – Updates on Six Unusual ALS Projects bit.ly/bedlack-webinar We have several blogs that talk more about some of the topics mentioned in this article: Microbiome: is the answer in our guts? mndresearch.blog/2019/05/31/ microbiome-is-the-answer-in-ourguts Paving the way towards better clinical trials mndresearch.blog/2019/04/03/ paving-the-way-towards-betterclinical-trials ALSUntangled – untangling the mysteries of alternative and offlabel treatments mndresearch. blog/2019/10/23/alsuntangleduntangling-the-mysteries-ofalternative-and-off-label-treatments www.mndassociation.org

yourstories

‘MND brought an emotional earthquake into our lives’ Having watched her sister-in-law die from MND, Hilary Smith was devastated when her husband Colin was diagnosed with the same disease just a few years later. Here, she talks about her experience as Colin’s carer and how he is never far from her thoughts.

“A

fter living with my husband, Colin, for many years and feeling blessed to have had such a wonderful husband by my side, I found myself along with my darling Col in the midst of an emotional earthquake, there’s no other way to describe it. Being told, after many months of struggling with his health that the diagnosis was motor neurone disease in June 2017 was unbelievable. Having watched my brother’s wife, Diane, endure the same horrid disease and eventually passing away 10 years ago I thought it just couldn’t strike our family again. How wrong was I and what rotten luck after all Col had endured in his life – polio, TB, psoriatic spondylitis to name but a few. This just wasn’t fair. “The MND team was marvellous and both Col and I had only praise for everyone who came to the house offering advice and help. We both talked openly with everyone, including our grandchildren, about what was happening to Col and we talked with each other.”

“In total shock we went home to begin our new ‘normal’ life. I can remember wandering around the house, looking for some sort of normality I think, but never quite finding it. “Silently praying for help I quickly went into caring mode. I just wanted to stay well myself to be able to care for my beloved Col. Having been diagnosed with chronic fatigue syndrome myself 15 years earlier and getting to grips with balancing my life – doing ‘stuff’ and resting – I desperately had to get the right balance to care for Col. “We settled back into life, trying hard to carry on with birthday celebrations and Christmas – but there was always

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an underlying sadness and fear – how was I going to carry on when the inevitable happened? I envisioned all sorts of scenarios and didn’t like any of them. I had felt so blessed with my life having had three beautiful children and when grandchildren came along, well, that was the cherry on the cake. We were so lucky to have had 10 years of retirement together, travelling to many beautiful places and spending time in our lovely home and garden – I’d known true contentment. I think this is possibly what has kept me going. “Col made it easy for all of us to look after him, he was always positive and engaging with family and friends when they visited. All the years that I had known Col not once did he complain and this didn’t change as he endured this horrid disease. He enjoyed family and friends visiting as did I – it was a distraction for both of us. Our two daughters often popped in and Col’s face would light up. James, our son who lives in Hong Kong, would FaceTime twice a week, which was a great comfort and something to look forward to. “The MND team was marvellous and both Col and I had only praise for everyone who came to the house offering advice and help. We both talked openly with everyone, including our grandchildren, about what was happening to Col and we talked with each other. Nothing was hidden and brave faces were allowed to crack – this has always been a home where we talked about everything and anything and it wasn’t going to change now. However horrid a situation is we both believed that to talk it through takes away some of the fear. “I busied myself thinking up tasty meals for us and trying to give Col a richer diet to fatten him up. One day having gone a bit too far with cream and butter in scrambled eggs and nearly making Col sick, I realised I had to slow myself down a

yourstories

Colin pictured on holiday

bit. I did succeed in fattening him up though and began to wonder if just maybe he could get better? But alas…. “I researched MND a little but not much – it was just too painful – and decided to keep it at arms–length and let the MND team answer any questions we had – this was not denial but just self–preservation. “We’d always shopped together and when walking any distance became too much for Col we hired a wheelchair. So off we would go into town, always stopping for a coffee somewhere. I had been used to Col’s mum being in a wheelchair for many years before she passed away, so pushing Col wasn’t a big deal for me. I knew how to go backwards down a kerb and not forwards, which would possibly have tipped Col head first on to the pavement! Being the independent man that he was Col often wheeled himself around the shops and I would often lose him along one of the aisles! We had always held hands when out together and when one of our children came along with us and shared pushing the wheelchair I would walk alongside the wheelchair holding Col’s hand tightly. If he was carrying lots of bags on his lap and didn’t have a free hand I tried to walk beside him or a little in front so he could see me. As the disease progressed, Col needed to know where I was so I always made sure to check

up on him with a hug or a smile. He once told me that my smile was better than all the medicine. “Col for me was always like being ‘home’ and, wherever we were in the world, I always felt safe. Nothing else mattered except looking after my darling Col. As he slowly grew weaker I had mixed emotions. On the one hand I didn’t want to lose him but on the other I didn’t want him to suffer any more. So, on that day in September 2018 when he finally passed away – he didn’t die because I believe that death is nothing at all just a continuation of spirit and a change of world – there they were again, those mixed emotions. “I’m grateful that I was able to care for my darling right to the end of his life on this earth. And also that he stayed in our home, which is where he was born. “I am surrounded by loving family and friends and feel blessed to have known true contentment. I’m trying hard to fill my days and have many hobbies and watch a lot of TV, always with Col in my thoughts. I silently talk to him and he answers me and I’m finding that some of his characteristics are coming out in me – what is this all about?” Brother and sister raise money in memory of their loved ones – turn to page 22.

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Sam gets to work after winning prestigious MND studentship

prestigious PhD Studentship which aims to develop and nurture young MND researchers in their chosen career has been won by Kent-based Sam Bryce-Smith. Sam, pictured, started his studentship last December under the joint supervision of Dr Pietro Fratta and Dr Maria Secrier at University College London. His project will explore two proteins -TDP-43 and FUS - that are associated with MND and are involved in processing molecules called messenger RNA, the molecule that provides the information for the DNA to make the protein. Sam will see if disrupting the processing of messenger RNA also affects other genes and whether these changes contribute to the early stages of MND. This important work could improve understanding of how the disease develops, which, in turn, may provide new targets to develop treatments that can stop MND in its tracks. Sam said: “The chance to contribute to our understanding of the disease and provide opportunities for new potential treatments is something that really excites me. However, the chance to have a positive impact on people’s lives through my studies is what really drives me, and I feel this studentship is a fantastic opportunity to do so.” The Masonic Charitable Foundation PhD Studentship has been fully funded by The Masonic Charitable Foundation. The Foundation is funded by Freemasons, their families and friends, from across England and Wales. David Innes, Chief Executive of the Masonic Charitable Foundation said: “I offer Sam my warmest congratulations on winning this very prestigious PhD Studentship. Progress in his research could one day lead to a major breakthrough in stopping this terrible disease.” Linda Allen, the Association’s Director of Fundraising said: “Support like this from The Masonic Charitable Foundation

Sam Bryce-Smith

means we can provide the opportunity for young researchers to work under the tutorship of leaders in the field of MND and help us to develop the MND research leaders of the future. “Together we will make a difference to those living with and affected by this devastating disease.” For more research news turn to pages 4, 5, 10, 11 and 24.

Review of services leads to new-look team

LARITY, consistency and continuity are the key aims for the MND Association’s new-look regional teams following a comprehensive review of the services provided. The nine-month project involving people with MND, volunteers and staff looked in detail at the way our teams work in the regions and the support needed by people affected by MND and volunteers. While many people affected by MND were receiving excellent services from the Association, because of the way our support had developed in different areas, there were inconsistencies. The introduction of new roles with clear remits will ensure that wherever someone with MND lives they will have access to the same level of support from the Association. One of the new roles concentrates on supporting people

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with MND and volunteers, while the other focuses on the development and improvement of statutory services. The new structure will also create more opportunities for branches, groups and volunteers to seek support for key activities, such as recruitment and running support groups. The review resulted in a restructure and there are now new teams forming to cover each region. Many staff have been able to move into new roles at the Association so people with MND and volunteers will continue to work with staff they are already familiar with. We are now working to fill vacancies and look forward to introducing new members of the team in the coming months. Following on from this important piece of work, a review of our MND Connect service in the coming months will look at how we can expand the service with the use of new technology.

Broadcaster set to be the voice of Association’s radio appeal

ROADCASTER Matthew Bannister will be the voice of the MND Association’s BBC Radio 4 Appeal when it airs in March. Mr Bannister, who is a regular presenter on BBC Radio 4 and a former Controller of BBC Radio 1, will front the appeal to help raise money for the Association as well as awareness of MND among the station’s 11.5 million listeners. In 2001, Mr Bannister’s father Neville died from MND, while his mother, Olga, volunteered for the MND Association for many years following his diagnosis. In recognition of her incredible work, supporting people living with MND in South Yorkshire, Mrs Bannister was presented with the British Empire Medal in June 2018. She died just days later aged 84. At the time, Mr Bannister said: “Mum spent 17 years as a volunteer offering support to hundreds of MND patients and their families across South Yorkshire. She drew strength from the fact that the families she had buoyed up with her cheery compassion and steely determination to cut through bureaucracy usually wanted her there at the end. Many became lifelong friends. “Her amazing kindness and compassion made a huge impact on so many people – not least on my dad whom she looked after through every second of his struggle with motor neurone disease.” The Association’s BBC Radio 4 Appeal will be broadcast

Matthew Bannister, pictured with his partner, Kate Maguire, left, and the Association’s Royal Patron, HRH The Princess Royal

on Sunday, 22 March at 7.54am and 9.25pm and again on Thursday, 26 March at 3.27pm. Full details of how to donate will be available via the Association’s website at www.mndassociation.org and our social media channels nearer the time.

MND Association wins prestigious Biobank award

HE MND Association has received a prestigious award in recognition of its work on the UK MND Collections. The Collections, which began in 2003, are made up of samples of blood taken from people who are living with MND which are used by researchers to help them understand more about what causes MND. In recognition of this important work, the Association was presented with the 2019 UK Biobank of the Year award at the UK Biobanking Showcase held in Nottingham in November. The MND Association’s Director of Research Development, Dr Brian Dickie said: “We are proud to receive the honour of being named the 2019 UK Biobank of the Year. The MND Collections continues

to contribute towards the discovery of genes associated with MND. This award recognises the invaluable resource of biological samples that the MND Collections provide to researchers around the world to help find the causes of MND and potentially a cure.” The Association would like to thank all of the participants for donating their time, blood samples and data, to all of the staff who worked across the many clinical sites to enable the collection of the samples and data, and to all of the fundraisers who have raised the money to enable the MND Association to not only create this invaluable resource, but to help us continue to provide access to the samples and data to researchers around the world.

Local support when you need it most

EOPLE looking for help following a bereavement can find information about local services from the AtaLoss charity website. The Ataloss website is a database of UK bereavement services – national, local, general and specific. People in need of support answer a series of questions and, based on their answers, the website suggests organisations best suited to their individual needs, including the MND Association. In 2017, the website received a Premier Digital Award and now hosts a free live counselling facility called Griefchat. For more information, or to recommend services that have helped you, visit the website at www.ataloss.org. The MND Association’s guide Finding your way with bereavement is also available from www.mndassociation.org www.mndassociation.org

2019: Our year in numbers

At the start of a new year – and a new decade – Thumb Print takes a look at the difference we have been able to make in 2019 thanks to your incredible support.

888 researchers representing

33 countries attended the Association’s International Symposium on ALS/MND – our highest number yet for AustraliaD

1,726,481 unique page views our website received during 2019

£2,097,133 was claimed

89 branches and groups offered support to people with MND in communities across England, Wales and Northern Ireland

2,011 people living with MND have now signed the MND Register

28,311 miles were run by our

415 Association visitors and support volunteers offered help to those affected by MND

supporters during 2019

22 care centres provided

through the Association’s Welfare Benefits Service

305 people attended one of our regional focus events

multi-disciplinary care to people with MND

55,435 people signed

51,129 pieces of information

7,381 unique page views

£1,260,764 was awarded

£13,998,102 was the value

796 people received support through equipment loans or grants

the Association’s Scrap 6 months petition

in support grants to people with MND

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were downloaded during the past year

of the Association’s research portfolio at the end of 2019

of MND Buddies web hub received since August

‘Let’s kick-start a conversation about our plans for the future’

O you have thoughts about what the Association’s priorities should be in the years to come? If so, we want to hear from you. Throughout 2020, the staff and our trustees will be working on developing a new strategy – a document which sets out the work we need to do to help us move closer to our vision of a world free from MND. People living with MND and all those who care for them remain at the very heart of everything we do, which is why involving our members in the development of our new strategy is so important. The Association’s Chief Executive Sally Light said: “We want to kick-start a very open conversation with you, our members to make sure we fully understand your ever-changing needs as

well as seeking your views on the work we are currently doing. “Your thoughts and opinions will then help us decide what our priorities should be for the next five years and how we should spend the money which has been raised and donated so generously by our members and supporters.” If you would like to let us know what you think, a freepost postcard has been included in this edition of Thumb Print. Our survey asks members to answer two main questions: How should we allocate funds? and How can we improve our work on behalf of people with MND? There is also space for you to make your own comments. You can also complete the survey online at www.smartsurvey. co.uk/s/newstrategy22 Please return all postcards to the MND Association by 3 April, 2020.

The Association’s Chief Executive, Sally Light

What have we been working on? Care

Research

• We developed content to support children, young people and families through a new web hub, creating a safe space for children to learn about MND.

• Supporting a number of clinical drug trials, including MIROCALS (a trial of interleukin-2) and TUDCA-ALS (a trial of tauoursodeoxycholic acid) and establishing funding plans for trial of lithium in a subgroup of people with MND, to start in 2020.

• We helped more people living with MND join the MND Register, providing an oversight of the numbers and locations of those whom we support, helping both research and care communities. • Our Benefits Advice Service helped more than 1,000 people access £2million of eligible benefits • We reviewed and restructured our regional teams to focus even more on those whom we support and improve care services

• Extending the used of our awardwinning MND Collections resource. DNA and clinical data were used to identify three new genes linked to MND and our cell lines are being used in a new drug screening study. • Establishing new activities with other funding organisations, including Fight MND, My Name’5 Doddie Foundation, Marie Curie and the Medical Research Council.

Campaigning and raising awareness • Pushing for a change in the law in the welfare benefits system. More than 55,000 people signed our Scrap 6 Months petition calling for everyone with a terminal illness to be given access to the Special Rules for Terminal Illness fast-track, which currently only applies to those who are expected to die within six months. • Calling on the Government to provide more funding for accessible housing and housing adaptations for people living with MND. • Hosting a number of innovative events, including Art Beyond Limits, an exhibition of art created by people living with and affected by MND, to mark the Association’s 40th anniversary.

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Come and meet our Hello everyone! I’m Carly the cat and I’m one of the MND Buddies! I’m so excited to be appearing in Thumb Print ! Clare, who puts together this magazine for your grown-up, asked me if I would like to write for you and I couldn’t wait to get started! I love painting, making things and using lots of crazy colours and I’ve been working super hard to put together a page of the magazine which I hope you will enjoy reading too. I haven’t done it all by myself though – my buddy Penni-May has helped me and you can read all about her on the opposite page – isn’t she just purr-fect?! Don’t forget – the MND Buddies are always here whenever you need us – you can find us at www.mndbuddies.org, but don’t forget to ask your grown-up before going online! “I hope you enjoy everything that Penni-May has written for you and I can’t wait to see you again soon!

Meet my other buddies

Lots of love, Carly x

Rini the Rabbit

Ali the Alligator Max the Monkey

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Eric the Elephant

new MND Buddies! Hello Everyone!

More about me!

“My name is Penni-May and I am 12-years-old. “I enjoy drawing, well, all sorts of art, I enjoy sports – mainly running, rounders, cricket and gymnastics. “I love school, I have lots of friends and I enjoy so many of my lessons but there’s some I could happily live without! “I have had this amazing opportunity to write for Thumb Print because 17 years ago, my dad started to get symptoms of MND that sadly took over his body. He has had it all my life. “I always wished there was someone there for me to talk to because I worried if I talked to Mum and Dad it might upset them, but I know now that they like me to talk to them about it. For all the children out there keeping emotions to yourselves, please don’t because you don’t need to be afraid to talk to someone. Nobody will judge you. “I don’t really like to talk about the condition as it upsets me a little. We just deal with every day as it comes and always hope for the best. Having a parent who isn’t well is hard, as I don’t always get to do things that other families would do or experience. But I have had some ‘once in a lifetime’ opportunities that not many other people would not have had. In 2014, I went to The O2 in London and walked out on the court at the ATP Tennis Tour while holding onto Spanish player, David Ferrer’s hand and the biggest tennis ball I have ever seen! We then got to watch the match between him and Rafa Nadal – the atmosphere was amazing! I have also been round Silverstone in a Ferrari – it was so fast I think I nearly threw up! “The MND Association organises events and recently arranged The Big Picnic which all the family and our friends could go to and have a fun day out without having to think about the condition or our worries. I also go to a Young Carers Club which allows some time out with children in the same situation as me. As a family we enjoy going away in our campervan, it’s like a home from home.” Eric the Elephant, drawn by Penni-May. Visit the ‘See it’ section on MND Buddies at www.mndbuddies.org to submit a picture of your own.

Name: Penni-May Age: 12 Favourite subject at school?: Art and food tech Favourite food?: Definitely pizza! Favourite movie?: Jumanji Favourite book?: Harry Potter or Diary of a Wimpy Kid Favourite pop star?: Rick Astley and Olly Murs What would you like to be when you grow up?: I would like to be a baker and make cakes, chocolate sculptures and patisserie

Have you met my friends Isaac, Erin and Elih? They are the stars of a new video which my friends in MND Education, Emily and Kaye, have put together to help your grown-up learn more about the information which is available to help you. You can watch their film at bit.ly/MNDBuddiesVlog – don’t forget to get your grown-up’s permission first!

Would you like to be our next MND Buddy? If you would like to write for the next edition of Thumb Print please get in touch with editor, Clare Brennan at clare.brennan@mndassociation.org or on 01604 611877. You can also get in touch via Twitter: @mndaeditor.

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OR Sam Tooze every day is another chance to fight back against MND. Since being diagnosed with MND in 2017 – aged just 26 – Sam has taken every opportunity to fight back by fundraising with her family and friends and helping to set up the Coventry and Warwickshire branch of the Association. She is determined not to let MND beat her and is now challenging the Association’s supporters to help her #TakeOverMND by signing up to fundraise during 2020. Sam said: “Being diagnosed with MND has been the hardest thing that has ever happened to me. Even though I had been experiencing symptoms since 2013 it took a long time to be diagnosed – it was a very long journey. “Whatever you to do will make a huge difference to the lives of people living with MND right now – and help fund research into new treatments which will help people living with MND in the future.”

“I was eventually diagnosed six months after marrying my husband, Chris. It should have been a time when we were both looking forward to the future, but instead we were forced to make very difficult and emotional decisions about our future, such as whether or not to have a baby. We decided not to and it was devastating. “My friends and family have been amazing and so supportive of everything I have done. Being diagnosed with MND has had an affect on everyone, particularly Chris and my mum, who really struggled at first. The MND Association has been amazing, offering help when we needed it most. Now I just want to try and do everything I can to help others who are in the same situation as me.” Sam and her family have taken part in fundraising events of all kinds – from bake sales to skydives – and now you can do the same. Throughout January, Sam will be featured on the Association's social media channels encouraging others to fundraise and #TakeOverMND. She said: “I challenge you to do one thing to help the Association raise money so it can keep on helping people just like me. “You can organise your own event such as a quiz night or a cake sale or you can take part in something bigger like a Walk to d’feet MND or one of the events listed opposite. “Whatever you to do will make a huge difference to the lives of people living with MND right now – and help fund research into new treatments which will help people living with MND in the future. Together we can #TakeOverMND.” For more information about how you can get involved and to hear Sam’s story, head to the Association’s social media channels – Twitter, Facebook and Instagram or www.mndassociation.org/takeovermnd

‘We challenge you to take over MND’

Sam pictured far rright with her family who have supported on her many fundraising challenges

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Choose your challenge! Walk to d’feet MND Choose a date, location and distance that suits you and take positive steps in the fight against MND. From a stroll in the park with friends and family to a big community event. With every step you will help bring us closer to a world free from MND. www.mndassociation.org/walk

Royal Parks Half Marathon 11 October 2020 This stunning central London half marathon takes in some of the capital’s world-famous landmarks on closed roads, and four of London’s eight Royal Parks - Hyde Park, the Green Park, St James’s Park and Kensington Gardens. Charity places are available. £30 registration fee and £395 minimum sponsorship www.mndassociation.org/ royalparks

Prudential RideLondon 16 August 2020 Join 27,000 other cyclists for the world’s greatest festival of cycling! The course follows a 100 mile route on closed roads, made famous at the London 2012 Olympics, through the capital and into Surrey’s stunning countryside. Charity places are available. £30 registration fee and £550 minimum sponsorship. www.mndassociation.org/ ridelondon

Great Manchester Run 24 May 2020 The UK’s biggest 10K, the flat and fast course is ideal for those new to running. The crowd support and party atmosphere along the route is like no other 10K race,

and is sure to help get you to the finish line! A half marathon route is also available. www.mndassociation.org/ manchester10k

Wing walk Various dates Experience the thrill of a wing walking ride in the skies above Essex! The ultimate adrenalin experience includes zooms and climbs at speeds of up to 130mph and low passes near to your friends and family. No training required! £50 registration fee and £1,000 minimum sponsorship www.mndassociation.org/ wingwalking

Extreme treks and overseas challenges Beat the January blues by setting yourself an unforgettable, epic challenge. Conquer the heights of Kilimanjaro, take in the beauty of Machu Picchu on the Inca Trail or climb the highest peaks in Scotland, England and Wales – in just 24 hours. You’re guaranteed an experience like no other and memories to last a lifetime. www.mndassociation.org/ wechallengeyou

Fundraise your way Why not organise your own fundraiser, or even better set yourself a challenge to hold a series of events throughout the year? Whether it’s a quiz night, sponsored head shave, danceathon or charity evening, the possibilities are endless! Set yourself a target and encourage your friends and family to help and join in the fun. www.mndassociation.org/ fundraiseyourway

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Brother and sister help to raise £3,000 in memory of their loved ones

Fundraisers take part in the Ruby Walk

BROTHER and sister who both lost their partners to MND have helped to raise more than £3,000 after organising a sponsored walk to mark the Association’s 40th anniversary. Brian Sackett and Hilary Smith who are both from Kent, decided to organise the Ruby Walk to d’feet MND in memory of Brian’s wife Diane and Hilary’s husband Colin, who died from MND nine years apart. The event was held in Canterbury on 6 October – the 40th anniversary of the day the Association was registered as a charity.

Hilary Smith and Brian Sackett pictured at the start of the Ruby Walk

www.mndassociation.org

Brian explained the event had been incredibly emotional for them both, but that it had been a wonderful way to remember Diane and Colin and all those who are living with and affected by MND. “A lot of people have come up to me and asked, ‘What is MND?’ I always try and explain it as best I can. I cared for Diane full-time and we had the most wonderful 30 years together, full of love and laughter. It was a privilege to be with her.”

He said: “About a month after Diane died, I organised a 30-minute walk for the Association and we raised about £5,000. A few months ago, I was sitting in my chair and thought, ‘It’s been ten years since Diane died, where has that time gone?’ I still miss her like mad and then I remembered it was the Association’s 40th anniversary this year and the idea developed from there.” Brian, who is a former Chair of the East Kent Branch of the Association, came up with the idea of encouraging 40 walkers to walk for 40 minutes, each raising £40 with the aim of raising £1,600. On the day, 54 walkers turned out to walk around the athletics track at

Lifestyle Fitness in Canterbury and, together with donations from those who were unable to attend, raised an incredible £3,113. As well as helping to organise the event, Brian and Hilary have been busy raising awareness of MND and the work of the Association, by appearing in local newspapers and on regional TV. He said: “A lot of people have come up to me and asked, ‘What is MND?’ I always try and explain it as best I can. I cared for Diane full-time and we had the most wonderful 30 years together, full of love and laughter. It was a privilege to be with her.” If you would like to make a donation please visit www.justgiving.com/ fundraising/rubywalk2019 Hilary's Story: Pages 12 and 13.

Brian with his beloved wife Diane.

Young artists have designs on competition prize

WO young artists will see their amazing festive pictures turned into greetings cards for Christmas 2020 after winning the Association’s annual Christmas card competition. Emily Court from Birmingham and Giselle Kalu from London won the competition with their designs featuring a snowman and a Christmas tree. Emily’s mum, Natasha said: “Emily was so excited to know her card was chosen. I am sure my nan, who passed away from MND when Emily was just two-and-a-half, will be smiling down at her.” More than 60 people entered this year’s competition and the winning designs will be turned into Christmas cards which will be available to buy from our online shop at www. mndassociation.org/shop later this year. If you are looking for some January bargains head over to the MND Association online shop now where you will find Christmas cards, wrapping paper and much more at amazing prices.

Raffle is a real Christmas cracker!

HANK you to everyone who bought and sold tickets for the Christmas Raffle - together you helped to raise more than £110,000. Congratulations to all those who won prizes including Adryenne Hope who won £5,000, John Hams who won £1,000 and Mr A Milton who won £500. For the full list of winners, please visit www.mndassociation.org/raffle. For another chance to win some great prizes – and support people living with MND at the same time - don’t forget to look out for details of the Summer Raffle in the Spring edition of Thumb Print.

Make a date to support our fundraisers

OU can start the new year in style by purchasing a range of calendars which have been put together by our fundraisers. Among them is a calendar created by Isabel Norton who is raising money for the Association in memory of her mum, Rosemary who died from MND in 2016. Since then Rosemary’s bear, Rosie has travelled around the world raising money for the Association and awareness of MND. Isabel now has 2020 calendars, each featuring photos of Rosie Bear on her travels, available to buy from her ebay store at www.ebay.co.uk/urs/rosiebear4mnd

The winning designs from Emily, top left and Giselle, top right and other entries from Eleanor King, bottom left and Lucy Somay, bottom right

DIAGNOSED WITH MND?

Join the MND Register to help leading researchers learn more about this disease

The MND Register of England, Wales and Northern Ireland will be the first comprehensive source of information collected by experts about people living with MND and you can play a vital role in its development. Pioneered by MND specialists Professor Ammar Al-Chalabi of King’s College London and Professor Kevin Talbot of University of Oxford, the MND Register aims to: • Collect information about people with MND, to understand more about why certain people are vulnerable to the disease • Find out precisely how many people currently have the disease and how this is changing over time • Establish where people with MND live, to help improve care in those areas • Collect detailed information about the disease to detect patterns of change in incidence and outcomes. How to join the MND Register

You can apply online at www.mndregister.ac.uk or ask about joining when attending your next clinic appointment. If you have any questions please visit the website www.mndregister.ac.uk alternatively you can email mndregister@kcl.ac.uk or call Oxford 01865 227 714 or KCL 0207 848 5258

The MND Register is funded by the MND Association and supported by the Betty Messenger Foundation and an anonymous family trust. V1.0 22.01.19 IRAS Number 173389

www.mndassociation.org

Care centres offer the chance to learn more about the MND Register

HEN it comes to finding out more about the MND Register your nearest MND care centre could be a good place to start. The Association has a network of 22 care centres across England, Wales and Northern Ireland which are run in partnership with the NHS. At present, 15 of those are recruiting patients onto the register while the other seven are expected to start in due course. “The MND Register is a very important project as it helps to identify potential trends and help us to accurately and consistently develop clinical care for the here and now.”

One of the care centres which is helping people learn more about the MND Register is the Norfolk MND Care and Research Network which cares for around 100 people who are living with MND. The network’s co-ordinator, Helen Copsey, said the MND Register – which aims to help researchers learn more about the disease – was an important part of its work. She explained: “Our network opened in 2017. Our hub is in Norwich and we have

The team from the Norfolk MND Care and Research Network, from left to right, Alex Miller-Fik, Dr Caroline Barry, Helen Copsey and Dr Godwin Mamutse

satellite clinics in Cromer, Beccles and Kings Lynn. “So far we have recruited 45 people who are living with MND to the register. We provide the information they need and then help them to register online. The MND Register is a very important project as it helps to identify potential trends and helps us to accurately and consistently develop clinical care for the here and now.” So far, more than 2,000 people living with MND have joined the register,

with 400 people registering themselves online at www.mndregister.ac.uk. If you haven’t signed the register yet you will find more information about the register on the website. Look out for our new social media campaign #MNDRegisteredYet coming soon. We are grateful for the support of the Betty Messenger Charitable Foundation and a family trust which wishes to remain anonymous for enabling the Association to fund this important project.

MND Register: The facts More than 2,000 people have signed up to the MND Register of England, Wales and Northern Ireland. In total, more than 32,000 people living with MND have signed up to the 18 MND/ALS registries we are aware of around the world. The largest is the National ALS Register of America which currently holds information from 15,927 people living with MND. 24

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Stars take to the stage for fundraising gala

HE stars came out in force at a West End charity gala which was held in Stevenage in November. Organised by brothers Carl and Neil Rutherford who lost their father to MND in 2015, the show featured West End stars including Alice Fearn, best known for her role as Elphaba the Green Witch in hit show, Wicked! Other performers at the gala, which took place at The Concert Hall at Stevenage Arts and Leisure Centre, included Dean John Wilson who starred in Aladdin and The King and I, a choir of students and graduates from Mountview, a leading drama school and an orchestra made-up of 36 musicians. The event raised a total of £9,222 for the MND Association.

Veronica launches new poetry book

Fighting back with every step

WO books of poems written by Veronica Lamb have been published to help raise money for the MND Association. The books tell the story of Veronica’s journey with MND after she was diagnosed in December 2018. Veronica explained: “I have always written poetry, especially during stressful times in my life and it has always been cathartic. The poetry I write now came about for several reasons but mainly because MND had left me unable to speak which made it difficult to explain my feelings. “I was suddenly overwhelmed by all these people who had been assigned to help me, but none of them knew me and they thought they could make decisions on my behalf. My poems became harsh as I was trying to make people understand my wishes. It was a very frustrating time.” Veronica now uses an iPad to communicate and write her poetry. She has also been supported by staff at her local hospice, where she has held a number of poetry readings. If you would like to buy her books you can contact Veronica via Twitter at @Lamb123V

Jo Clarke and her partner Sean are welcomed at the finish line by her family.

COUPLE has helped to raise £1,600 for the MND Association by taking part in a 25km walk from Bakewell to Tideswell in Derbyshire. Jo Clarke and her partner Sean took part in the event to raise awareness and money for the Association after Jo’s mum was diagnosed with MND in 2018. They were met at the finish line by their family which Jo said, “made the whole event worthwhile.” For more pictures and stories from our amazing fundraisers turn to pages 20, 21, 36 and 37. www.mndassociation.org

‘He was the very h We can’t believe M

EMBERS of a family, whose lives were completely devastated after their beloved husband, father and grandfather died from MND, have vowed to do everything they can to help raise money to fund MND research. Ashwin Tailor was 60 when he died from MND in May 2018 having been diagnosed in 2015. Since then his family, including sons, Remal and Rikesh, have gone to extraordinary lengths to raise money for the Association, taking part in a skydive, a half marathon and an 80mile walk from London to Rugby, raising thousands of pounds. Ashwin’s wife, Mina, who cared for him throughout his journey with MND, said they first noticed something was wrong during the summer of 2014. She said: “I remember one day he was cutting the lawn. He would do one length and then have to stop. He was exhausted all the time and I told him he should see the doctor. When he went, they said he was deficient in iron and Vitamin D so he was given medication.

Ashwin Tailor

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He took it, but it didn’t seem to make any difference at all.” As time went on, Mina noticed Ashwin was also having difficulties walking. She said: “He was always several steps behind me. I kept asking, ‘What’s wrong? Why are you walking like that?’ He became frustrated and told me to stop asking him. Ashwin had always been very close to his sons so when Remal noticed it too he started to worry that it could be something serious. He started having falls and we knew he had to see the doctor again.” At first his family thought he could have Parkinson’s disease but by this time, Ashwin had started to do his own research online. “We were so grateful for the support of the MND Association, I just don’t know what we would have done without them. It is a terrible disease. Ashwin would have done anything to help anybody, he was the heart of our family. We still can’t believe he has gone.”

Mina said: “Ashwin told Remal he thought he had motor neurone disease, but Remal told him to stay positive. He was referred to a neurologist and had lots of tests and scans.” On 25 November 2015 the family learned that Ashwin had been diagnosed with MND. Mina said: “For a long time we had talked about visiting Kenya, where Ashwin and I were born, to see Mombasa and where we both used to live. Remal said that the time had come for us to go. “He went back to where he grew up and we visited the Maasai Mara. It really was wonderful and we made some very special memories.”

Ashwin and Mina also visited Dubai and India, before returning in late 2017 for a ten week stay. Mina said: “He wanted to visit Goa, but by this time his health really was deteriorating and we were accompanied by a carer who was a great help to me. I contacted Remal and told him that we would need more help when we returned.” As Ashwin’s condition worsened, Mina found caring for him much more difficult. She said: “He wanted me all the time and it made things very hard. I would try to sleep, but he wanted me with him, even though we had carers through the night. I would wake and sit with him. He became frustrated and then would apologise for his words. I told him none of it was his fault. He was just so strong, he didn’t want to go.” Ashwin died on 19 May 2018

heart of our family. he has gone’

Mina Tailor, third from left, pictured with her family, welcoming her son Remal, after his fundraising walk

leaving his family devastated, but also determined to help others affected by MND. In 2016 Remal took part in a half marathon and in 2017 Rikesh took part in a skydive. In 2018, just months after Ashwin’s death, Remal raised almost £8,000 by walking from his home in North London to his family home in Rugby, Warwickshire. Mina said: “It was very emotional for Remal. He told me that Ashwin was with him every day and they talked during the whole journey. I am so proud of Remal and Rikesh for honouring their father. “We were so grateful for the support of the MND Association, I just don’t know what we have done without them. It is a terrible disease. Ashwin would have done anything to help anybody, he was the heart of our family. We still can’t believe he has gone.”

Rikesh Tailor takes part in a skydive

Remal Tailor with his children

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Social care who, what and where?

CCESSING social care can be confusing and as a result of feedback from members we have improved our social care information. Essentially, social care is the provision of professional support to help manage daily routines and personal care. This may include equipment to prolong independence. While we all know our GP is our first port of call for health issues, seeking social care isn’t as straightforward. Because social care is tailored for individual needs, there is no single, clear list of what’s available. Your needs have to be assessed to see if you qualify and to work out the type of support you need. You then choose how to receive this support, as agreed in your personal care plan. England, Wales and Northern Ireland have their own ‘quirks’ in how they approach social care and local services also vary across regions. Social care is mainly provided through adult social care services, but involves other care providers. You can also choose to receive direct payments to select your own care services, which gives you control, but means taking financial responsibility. Further social care support or equipment can also be sought through professionals such as occupational therapists. Carers can also have

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their needs assessed, for support to meet the demands of their caring role. All of this can feel bewildering and takes time and preparation. So how does anyone make sense of what’s on offer? We have information on social care in many of our resources, but an overview was needed. Your feedback has included responses about information needs, such as, “Many people don’t know how to deal with these sort of issues, which makes life even more difficult. Anything that helps understanding can only be for the good.” A new information sheet, 10B – What is social care? now brings the main details together. It explores who provides support, what’s on offer and where to access this help. We’ve included tips on how to prepare for a needs assessment and what to consider if you choose to receive direct payments. We hope this guidance will help you seek the best possible outcomes from social care. You can download sheet 10B from the Information sheets option at: www.mndassociation.org/careinfo or order a printed copy through our MND Connect helpline: 0808 802 6262 or mndconnect@mndassociation.org

Care information updates Information sheet 6A – Physiotherapy: This sheet has been revised. It explores how exercise, assisted or passive, can improve range of movement and strengthen muscles as yet unaffected by MND. Information sheet 7C – Speech and communication support: This sheet has been revised and looks at the support available if your speech and communication is impaired by MND or Kennedy’s disease.

Information sheet 10B – What is social care? A new sheet giving an overview about how to access social care for help with daily routines and personal care, or for equipment to prolong independence. Information sheet 10D – NHS Continuing Healthcare This sheet has been revised and looks at how to apply for funded healthcare support from the NHS. Information sheet 10F – Personal health budgets: A new sheet looking at how NHS personal health budgets in England can give you more choice and control over the healthcare services you access. Care information vlog: Our latest vlog is introduced by young children, who are helping to explore our new MND Buddies activity hub and companion storybook. It also includes updates about other new resources, you can find the vlog at www.mndassociation.org/careinfo

Download our resources at: www.mndassociation.org/ publications or order printed copies from our MND Connect helpline: 0808 802 6262 Email: mndconnect@ mndassociation.org

Would you like to help with our information? We’re looking for people with MND or Kennedy’s disease, and their carers, to help with our information. We have opportunities to get involved with content on a range of resources and different formats, including animations. You can pick and choose which tasks you want to work on and make a difference from the comfort of your own home. To find out how to join our User Review Group, contact: volunteering@mndassociation.org

Free Wills offer now available to all members

HE MND Association has teamed up with the National Free Wills Network to offer members the chance to make a free Will. In 2018, more than £5 million was very kindly donated to the Association through gifts in Wills – that’s over a quarter of our income – which is vital to continue our work to support those with MND and fund important research into potential new treatments. However, feedback at last year’s AGM revealed that for some of our members the cost of drawing up a Will is prohibitive. Having a valid and up-to-date Will is so important to protect your loved ones and to ensure that your future wishes are carried out. This is particularly important to those facing an MND diagnosis, who may also have future care costs to consider. That is why the Association is working with the National Free Wills Network to give our members the chance to make a

Will – or update their current one – free of charge with a local solicitor to ensure that your estate will be dealt with in a way you choose. David Sweet lost his mum to MND. He said: “Having an up-to-date Will

gives me peace of mind that my loved ones will be looked after. But most of all, it means I’m doing all I can to help others going through what Mum did. “That’s why I have also left a gift to the MND Association in my Will. Research is fundamental to sparing other families the devastation of MND.” The Association’s Legacy Marketing Manager, Emma Fellows said: “We’re offering a limited number of free, simple or mirror Wills to members to try to relieve some of the financial burden and ensure they are well protected. The Association pays for the service and there is no obligation to include a gift to us in return. However, if people are in a position to consider doing so we would be so grateful as any size gift would be put to good use in the fight against MND.” To find out more, see the leaflet enclosed in this issue of Thumb Print, or visit www.mndassociation.org/freewills www.mndassociation.org

Coming together to mark the As

CONIC buildings were lit up and special events were held across England, Wales and Northern Ireland to mark the Association’s 40th anniversary in October. In Liverpool, the Merseyside Branch arranged for the city’s town hall and St George’s Hall to be lit up in the Association’s blue and orange colours on 6 October to mark the anniversary of the day the Association officially became a charity. A few days later, on 12 October, the branch raised an incredible £11,000 at its annual ball which was held at the city’s Titanic Hotel. A Night at the Oscars was the theme of a charity ball organised by members of MND Plymouth. Entertainment during the evening was provided by West End performers Dominic Tighe, Marissa Dunlop and David Habbin from Encore Entertainment and there was also an Oscar’s award ceremony for branch members. The Association’s Head of Research Nick Cole gave a speech about the

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progress being made in MND research and there was a raffle, an auction and the chance to meet characters from Star Wars. The event raised £1,200. Blenheim Palace was the venue for the Oxfordshire Branch’s ninth annual Walk to d’feet MND which was also held during the anniversary weekend. A total of 65 supporters came together to walk on the paths around the palace on two and five-mile routes, all wearing their distinctive blue and orange MND Association T-shirts. The event raised more than £1,000. Bell ringers across Oxfordshire answered the branch’s call for peals of bells to mark the anniversary. Bells were rung in Hook Norton and a number of other churches around the region. Haldon Forest near Exeter was the venue for a Walk to d’feet MND hosted

by the Exeter and East Devon Branch on 6 October. The event was attended by the Lord Mayor and Lady Mayoress of Exeter, Peter and Jackie Holland, as well as Exmouth’s Town Crier, Roger Bourgein. Among those leading the walk was Brian Mackay, a former Royal Marine who is living with MND, and his daughter Lisa. She said: “I was delighted to see the sun was shining on the day lifting everyone’s spirits. It was so uplifting to see so many smiling faces.” A ‘Super Selfie Light-up’ was held at Southampton’s Guildhall, organised by the Association’s Southampton and Winchester Branch. On 20 October, members of the branch also took part in a special evensong service at Winchester Cathedral to mark the anniversary. The East Dorset and New Forest Branch raised more than £3,000 for the Association by hosting three events including its Ruby Do dinner dance which was held in October. More from the Association’s branches and groups – pages 34 and 35

ssociation’s 40th anniversary

N exhibition showcasing art created by people living with and affected by MND has raised more than £10,000 as well as valuable awareness. The event, called Art Beyond Limits, was held at the gallery@oxo on London’s South Bank to mark the Association’s 40th anniversary and featured work from a number of artists including Sarah Ezekiel and Miles Pilling who are both living with MND. “I was delighted to be invited to exhibit at the Oxo Tower to celebrate the 40th anniversary of the MND Association. It was a wonderful way to raise awareness of MND which is so important.”

Sarah was diagnosed with MND in 2000 and feared she would never create anything again. Thanks to Tobii Dynavox eyegaze technology, Sarah learned to paint using her eyes and is now one of the world’s leading eyegaze artists. She said: “I was delighted to be invited to exhibit at the Oxo Tower to celebrate the 40th anniversary of the MND Association. It was a wonderful way to raise awareness of MND which is so important. Art is an integral part of my life now, especially through technology, so meeting people at the exhibition who love art but didn’t know about MND was fantastic. I hope that art will continue to educate people about this devastating disease in the future.” Former BBC editor, director and cameraman, Miles Pilling was just 46 when he was diagnosed with MND. After being forced to retire early, Miles found himself using a mobility scooter to get around and started to use photography as a way of documenting the world from his point of view. He said: “Exhibiting at Art Beyond Limits will go down as one of the highlights of my life. It was brilliant to be able to show my photography at such a prestigious venue. Watching one of my pictures sell for £2,000 at auction was an absolutely thrilling experience and I am so pleased to have made many more sales as well, including one picture that

Sarah Ezekiel, pictured with her art at the event and photographer, Miles Pilling

sold eight times over! “I feel really proud to have made several thousand pounds for the Association from my Scooter Shooter street photography and from the 26Miles4MND marathon book project which was also for sale at Art Beyond Limits. Donating all of the money made to the MND Association is a no-brainer for me – I’ve met so many wonderful people living with MND who are hanging in there waiting for treatments and a cure. Bring it on!” “Exhibiting at Art Beyond Limits will go down as one of the highlights of my life. It was brilliant to be able to show my photography at such a prestigious venue.”

The exhibition featured more than 90 works of art and attracted 1,300 visitors during its six-day run. It also helped to raise valuable awareness of MND and the Association’s work. The Daily Express featured a full-page interview with Miles and Sarah in print and online reaching a potential audience of more than 63 million people. In the days leading up to the

event, The Guardian gave the event four out of five stars, describing it as ‘an exhibition which genuinely has something to say.’ Meanwhile in Leicester Square, in the heart of London’s West End, a billboard featuring film star Lily James, who is also patron of the Association’s North London Branch, was created to promote the event and raise awareness. Speaking at the exhibition, the Association’s Chief Executive Sally Light described the artists as ‘heroes, who really are an inspiration to us all.’ If you missed out on the exhibition but would still like the chance to own a piece of art, the MND Association can help. An online auction has been set up on ebay, where people can bid for their favourite piece by Miles Pilling and Sarah Ezekiel. All proceeds will go straight to the MND Association. For more information visit www.mndassociation.org/artsale Good luck!

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Supergrans help Team MND raise £180,000

RANDMOTHERS 77-year-old Val Furbank and her friend 70-yearold Jan Mulley were just two of the Association’s 142-strong team which helped to raise £180,000 at the Royal Parks Half Marathon in October. The pair completed the race in memory of their running club friend Sue who died from MND and in honour of Jan’s relative who is living with the disease. Former playschool teacher Val, who has two children and four grandchildren, has been running for more than 35 years, completing 29 London Marathons and numerous other marathons, half marathons and 10ks.

Michelle Dzumbunu, who was taking part in her first half marathon in memory of her dad

She said: “I started running after my sister died of heart trouble aged 39. I am lucky that I am well and that is why I have continued running over the years. We like to do the Royal Parks Half to think of our friend. We do it in memory of her every year. It is pretty and nice to see all the trees changing colour at that time of year.” Grandmother-of-two Jan, who has also completed her fair share of races, added: “We hope our little bit helps with research. We like this race – it is a lovely route and we enjoy doing it together every year.” Val and Jan were joined by Team MND runners dressed as cheerleaders, an orange Crayola pen, those sporting

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Friends Val Furbank and Jan Mulley took part in the event in memory of their friend who died from MND

blue wigs and orange ra-ra skirts and a team of Association staff including Chief Executive, Sally Light. Michelle Dzumbunu, 25, was also there, taking part in her first ever half marathon in memory of her dad. She said: “I followed #TeamMND on social media for the 2018 Royal Parks Half Marathon and I was so inspired by the diverse group of people that were all getting together to run in the rain to raise money and awareness of MND. “My dad had passed away five months earlier at the time, and out of all the negativity I knew that I was grateful for the Association and all they had done for me and my family. “I can’t change my dad’s outcome, but I can do my bit to spread the word and raise funds for research, care and other measures of support the

#Team MND pictured at the end of the race

Association provides.” Another of our runners, Scott Stewart, ran his second half marathon in 25 years in memory of his mum. He said he wanted to help after his mum received support from the Association, including a communication aid, and added: “If I can help in some small way to prevent anyone else from going through what I went through, then I’ll be happy. I think my mum would be proud of me but also would think I was crazy for doing it.” You or a loved one could join Team MND for the Royal Parks Half in 2020. Our places are limited so sign up now: www. mndassociation.org/royalparks If you or someone you know would like to be pushed in a wheelchair around the course please email fundraising@ mndassociation.org

Voice banking – where are we now?

HE process of creating a personalised, synthetic version of your own voice to be used in a communication aid – also known as voice banking – has existed for more than ten years but many more people are now seeing the benefits. Voice banking is when the user records a set of phrases which are then used to form the basis of the synthetic voice, using a laptop or computer and a headset microphone. The number of phrases needed depends on the service used, but it can be anywhere between 215 and 3500. The benefit of this set-up is that the need to record in a professional environment is removed, in fact, the vast majority of people banking their voice do so in their own home. The time it takes has also reduced from an average of 90 days in 2018, to just six days in 2019. The

Voice-banking can have huge benefits for people living with MND

quality of the synthetic voice continues to improve. For those who are looking for a voice which has more emotion and intonation, message banking should always be considered. Message banking

allows a user to add emotion to their recordings, but as it is simply recording messages you are limited in what you can record. However, if you have particular catchphrases, place names, or even a distinctive laugh then message banking can definitely help. The MND Association continues to provide support to people living with motor neurone disease who wish to voice or message bank. Laptops and headset microphones can be lent and financial support is also available toward the cost of creating a voice. More information is available on the MND Association website at www.mndassociation.org/ communicationaids For further advice or support please contact the MND Connect helpline for free on 0808 802 6262 or email communicationaids@mndassociation.org

A volunteer’s point of view Volunteer Mike Swaddling recently offered his support to people living with MND by helping to demonstrate the benefits of voice banking. This is his story.

“V

OLUNTEERING can occasionally throw up some unusual opportunities. I’ve had various roles over the years but recently something came up that looked a bit out of the ordinary. The speech therapists from the Royal Surrey Hospital based at The Beacon Centre were looking for a volunteer to help with a voice-banking project that would benefit people living with MND. “One of the more recently developed voice-banking packages, called ModelTalker, enables the creation of a voice bank, usually using the patient’s voice, which converts typed words into artificial speech. The patient records short phrases into the ModelTalker software containing all of the sounds or sound combinations used in the English language. The software reads words that are typed in and makes them audible by relating the combinations of letters to the sounds stored in each individual tailor-made voice bank. “My involvement in the project was to make a demonstration tape to show people living with MND how good the

voice reproduction could be. There were some initial hitches with finding the right equipment – but eventually I got going. The recording itself entailed putting on headphones and working my way through a list of short phrases. When each one came up on the screen, I was given an example of the pronunciation required, including intonation, which I then had to do my best to copy. Four boxes were beneath each phrase, each measuring a different aspect of the accuracy, and provided I got an amber or green light in each of them, I could move on to the next one. This was not so easy as it maybe sounds. Keeping a high level of concentration for much more than 15 minutes was difficult and required regular short breaks. A two-hour session was the norm before tiredness caused too many red lights, during which on average 250300 phrases could be recorded. “There were two remaining sessions. The first was to listen to six different versions of my synthetic voice made up by ModelTalker and choose the one that the therapists and I preferred. Finally,

there was a short session in January 2019 to test out the final version by typing in some test phrases. Listening to an artificial voice sounding spookily like your own is extremely weird! “I was partly motivated to take part by thoughts of my dad, who contracted throat cancer and had to have a laryngectomy, after which he spoke through a voice box. He left behind memoirs which he wrote using all the familiar vocal mannerisms and turns of phrase we remembered, so that when you read it back it was like he was talking to you. This helped enormously in getting over his loss, and I couldn’t help wondering how something like this might have benefitted him and us. “If a patient has already lost their speech they often ask a member of their family to do the recordings. I did suggest to the therapists that someone might even prefer to actually use my dulcet tones but they said that was unlikely. As it is, it is immensely rewarding to think how I’ve been able to help people with this debilitating disease.” www.mndassociation.org

branchesandgroups

Branch creates a special book of memories

COLLECTION of inspiring stories, uplifting poems and beautiful memories have been brought together in a special book created for members of the Association’s Chiltern Branch. Called Memories are forever, the book is full of stories of those who are living with MND as well as loving tributes dedicated to those who have sadly died. The book has been made possible thanks to the work of members of the Chiltern Branch as well as funding from Tesco’s Bags of Help scheme. Branch member, Cyndy Mepham explained: “The idea came from our Association visitor Graham Read who is also a former journalist. People told him so many stories and he wondered if there was a way in which we could collect them all together to form a book of memories. “This book pays tribute to everyone whose life has been touched by MND and is testament to their enduring courage and talent as they continue to battle this cruel disease.”

“People within the group were invited to share their stories and contribute in any way they could, whether they wanted to write a poem or share a painting or drawing. There were quite a few tears during the process, but we are delighted with the result.” In the book, Cyndy shares her own memories of her husband Roy who died from MND in 2010. She wrote: “He was always there for me when I most needed him, a shoulder to cry on, a fantastic person to go to if you had a problem. He was one in a million. All of these strengths helped him, and us, get through this devastating illness that he had to bear over the last couple of years of his life.

Cyndy Mepham and Janet Dell pictured with copies of the book, Memories are forever

Luckily, he will never be forgotten as there are plenty of loving memories and happy stories for us to draw on. Roy will be there for us forever.” Graham Read said: “This book pays tribute to everyone whose life has been touched by MND and is testament to their enduring courage and talent as they continue to battle this cruel disease. Hardship is a word all are familiar with, but defeat is a word all have refused to accept. This book applauds each and every one of them. We would like to thank all those who have contributed to this wonderful, inspirational and heartwarming book.”

‘She really wanted to make a difference’

Ann Williams, who dedicated much of her life to raising money for the MND Association.

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FAMILY, who have dedicated much of their lives to supporting the MND Association, have paid tribute to their beloved mum Ann Williams, who died suddenly in June. Ann became very well known in Prestatyn after losing her husband Derek to MND in 2014. She helped to support the Association’s work by organising bag packs and collections at local supermarkets and by encouraging shoppers to donate anything they could afford. Ann also encouraged her family to get involved in fundraising and raising awareness. Over the years, her daughter Andrea has taken part in a 50-mile bike ride,

while Andrea’s brother-in-law Neil also took part in a 10k in 2015 and the Royal Parks Half Marathon in 2017. Andrea, her sister Kate and brother-in-law, Neil, are also heavily involved in the North East Wales Branch – Andrea is the treasurer, Kate is the secretary and Neil helps put together the branch newsletter. Andrea said: “Mum wanted to talk to everyone about MND and raise as much money as she could. As well as the regular bag packs she organised other events including a concert featuring a male voice choir and a bakeit! afternoon tea. She just really wanted to make a difference.” Together, the family has raised almost £20,000 in memory of Derek, to help support people living with MND.

branchesandgroups

Community comes together for Brian

EIGHBOURS from across the village of Roddington in Shropshire came together in September to pay tribute to Brian Richards who is living with MND. Brian, who has lived in the village for many years, is a musician, and one of the founding members of The Blue Zone Band, a well-known and very popular group in the county. After being diagnosed with MND, Brian found himself no longer able to enjoy music as he once did, prompting his neighbours in the village to host a special event in the village hall in his honour. After a performance by The Blue Zone Band, afternoon tea was served, followed by a singalong and a raffle. The event raised a total of £1,208.35 which was later presented to the Association’s Shropshire Branch.

Branch serves up an £800 donation

EMBERS and supporters of the East Surrey Branch of the Association raised £800 at a Sunday lunch event held in September. As well as enjoying a three-course lunch, courtesy of the Surrey Downs Golf Club near Tadworth, there was also the chance to take part in a raffle. The money raised will enable to the branch to continue its work in supporting people living with MND across the region.

Gifts in Wills

hope A gift in your Will could give

of a world free from MND

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

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thankyou

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

‘We are family’: Harm Jager, along with his son Conall, daughter Ellen and other family and friends came together to take part in the Barns Green Half Marathon in honour of Harm’s wife, Alison, who was diagnosed with MND in December 2018. Harm said: “My beautiful wife has shown remarkable courage and fortitude considering the debilitating nature of this incurable condition and the restrictions it places on her. This is the second time the family has been directly affected by this disease and it is great to take this opportunity to raise some funds for this wonderful organisation.” Together they’ve raised more than £3,600 to support the Association’s work.

Music to their ears: Eynsford Concert Band raised money for the MND Association during 2019 and visited the Austrian Tirol. As well as playing concerts in Seefeld, Mayerhofen and Zell am Ziller, some members took part in a sponsored walk up the Ahorn. This is the highest peak in the area and is just short of 3,000m high. They got up to 2,400m and took some great pictures on the way.

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‘In memory of Dad’: Grace Haworth and her friends decided to complete the National Three Peaks Challenge in memory of Grace’s dad, Richard, who died from MND in June 2017 aged 50. Richard sadly died just over a year after being diagnosed. Grace and her friends raised more than £4,000 from this event alone. The tribute fund set up in Richard’s memory currently stands at more than £19,600. Grace said: “Dad would have been very proud of us attempting this challenge as he had hiked up all three peaks many times in his life.”

Team spirit: The team from Pace Communications took part in a 150-mile Cyclathon, virtually cycling the route from their office in Hull to the MND Association’s office in Northampton. They have raised more than £1,000 in support of their colleague Amy whose husband died from MND.

thankyou ‘I’ll do all I can to beat MND’: Zoe Miles held a bakeit! sale in the hair salon where she works and raised an amazing £620. She explained: “I lost my mum to MND when I first started working at Toni and Guy when I was just 16. I was so grateful for how everyone there looked after me when I was going through such a difficult time. My colleagues didn’t let me down on the day either, everyone put so much effort into making amazing cakes! I will do anything I can to help beat this disease. I don’t want other families to suffer like mine did.”

Fighting back with every step: Shivani and her husband Sundeep held their third Walk to d’feet MND event in October. Lots of friends and family joined them on the 13mile walk around the Maidenhead boundary and together they raised £846 in memory of Sundeep’s dad, Ramesh.

Time to remember: Tom Rhead is a keen cyclist and decided to use his passion to raise funds for the Association after MND touched his family. Having previously completed a 300-mile cycle in 2018, this year Tom helped to organise a 400-mile ride to Arnhem in the Netherlands, with 21 others from the Staffordshire Regiment Association Cycling Club. The club wished to support fellow member Steve Hadley who is also living with MND. This cycle was in commemoration of the 75th anniversary of Operation Market Garden in WW2 and raised a wonderful £3,000 which was split between the local Staffordshire MND Support Group and Help a Squaddie charity.

‘For Mum’: Siblings Nathan and Janine chose two different fundraising events to support our work in memory of their mum, Jackie. Nathan, along with his son Lennon, and friends Chris and Shawz completed Tough Mudder. Their target was to raise £550 to fund a tablet device with communication software and they smashed it, raising nearly £900. Nathan said: “We all completed the Tough Mudder and had a brilliant day. Even though Shawz hurt his knee mid-way round and spent four days in hospital. He is out now though and on the mend.” Janine along with her cousin, Kay, completed the London Marathon Walk and finished joint 10th in a fantastic time of seven hours and 23 mins and raised £2500. Kay said: “I walked in memory of my lovely Auntie Jackie whose life was cut short by this awful disease. Also, for my fantastic colleague Martin who continues to battle this disease every day.”

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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, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ or via email to editor@mndassociation.org Pease note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

‘It’s my life and I’m determined to live it!’ Heather Twine got in touch with Thumb Print to share her experience of indoor skydiving and how, despite being diagnosed with MND, she is determined to live her life to the full.

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AST Christmas, my dear husband, Tony, gave me a gift that really scared me! A voucher to try indoor skydiving at the Ifly centre in Basingstoke. As someone with a mild fear of heights, a lifetime loather of all theme park rides, I was unsure whether to thank Tony or not. “It was amazing! No other word for it. The staff were brilliant at helping me to take part. When booking, we’d alerted them to my condition, and I had to complete health forms ahead of flying, so they assigned two instructors to help me, rather than the usual one. Twice as many fit young men holding me…. result! “Upon arrival, we watched other groups of novice flyers in the high-speed vertical wind tunnel, while sipping coffees from the cafe next door. Tony indulged in lemon drizzle cake, which he later regretted. The highlight was seeing three instructors in the tunnel together performing balletic gymnastic moves at will. I’ve still no idea how they controlled their position. “Then it was our turn to join another eight or so excited people in the pre-flight classroom, to meet our own instructor, watch a short video about the procedure, safety rules,

body position and hand signals. The anticipation was palpable and such a slick system gave me great confidence. They knew exactly what they were doing, even if I hadn’t a clue. “We were kitted out with ear plugs, goggles, a helmet and a very fetching blue flying suit. Our group lined up on a bench beside the tunnel entrance and one by one each person launched into the wind. I was left till last, so the second, more senior instructor could join us, but actually the only time the two were needed, was when I came out of the tunnel when it took some time for my legs to recover. “Each flight was only a minute or so, but that was plenty long enough

In recent weeks, a small number of readers have been in touch to raise concerns about the use of the plastic mailing wrapper for Thumb Print. We take our environmental responsibilities very seriously and have listened carefully to readers’ concerns. As a result, we have investigated the possible substitution of plastic for other materials, including paper and compostable, starchbased products. While these provide a viable alternative for publications with a high circulation, the additional cost factor – up

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when you were in there. As necessary, the instructor held you, adjusted your position, gave hand signals, and generally kept you safe. It was absolutely fabulous! We were all offered a second flight, and that time I was taken right up high, out of sight of the viewing gallery, and spiralling back down again at great speed, twice! Wow! “As I mentioned, the after-effects were quite an amount of clonus (spasticity) in both legs for a while, but nothing lasting. I’m sure it’s not medically encouraged, and I’m not going to repeat it or heaven forbid, jump out of a plane, as Tony is now planning to do, but what the heck, it’s my life, and that really was an experience worth having. Bring it on!”

to three times the cost in some cases – makes them an expensive option for Thumb Print. With that in mind, the Association has concluded that the use of the current wrapper– which is produced from recycled plastic and is fully recyclable in all domestic recycling bins – remains the most cost-effective option at the present time. We will, of course, continue to monitor the situation carefully and review our position as and when new, affordable products become available.

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‘A book to help you find your way’

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HILE caring for my late husband, Ian, who lived bravely and stoically with MND for three years, I frequently felt hopelessly inadequate on a day to day personal level, even though I had an excellent support network. “I was generally far too exhausted to summon up the energy to read a book which might suggest ways of helping me feel I was coping better. “During the last year of Ian’s life, however, a good friend, who had cared for his wife for eight-and-a-half years as they both lived through her cancer, showed me the manuscript of a book he was thinking of publishing. The book had grown out of a notebook of jottings he had kept while trying to juggle his own wellbeing with the responsibilities of his caring role. It was just what I needed. “That friend was Verran Townsend. His book, Finding your way – caring for yourself while caring for someone else was published in June 2019. It keeps closely to the format of Verran’s notebook, involving his wife, Karen, by name. It

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. Sue and her husband Ian, who sadly died from MND

is a self-help book for carers, but it is not page after page of text offering advice. It includes reminders and gentle suggestions with plenty of space for the reader to add their own.” The book is available at bookshops and online from Amazon. Sue Patterson, via email

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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

Learning to live again after MND – three bereaved carers share their stories: Turn to pages 12, 22 and 26

‘Time to support Liz and others like her’ HORTLY after my dear friend, and surrogate sister Liz gave me two black bin liners of her shoes, I decided to write this poem. “She was diagnosed with motor neurone disease in August 2017. By February 2018, she could no longer wear her shoes with heels. “Now her mobility and speech have deteriorated. She can no longer walk without assistance and her voice is becoming slurred. “Despite that, she is one of the most independent and determined people I know. She has only just reduced her work schedule from full-time to part-time. She is Office Manager at the Kent Community Foundation. She has already been to parliament to speak on behalf of those with MND to the AllParty Parliamentary Group. “She has, for most of her life, been involved with the charity sector, working in both Scotland and England. She has moved home 17 times in her

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life, following job opportunities. “Liz has always helped others. It’s now time to help her and others like her.” Judith Northwood-Boorman, via email In Liz’s Shoes I always longed To be in Liz’s shoes. The Imelda Marcos of Chatham; wardrobe bulging with well-shod shelves, for every occasion in dazzling hue: a shoe. Glitzy salsa sling backs. Soft suede mules. Dolly shoes, pink, blues, spotted, bowed, killer heeled, narrow-toed, But now I despair. And don’t care To be in Liz’s shoes. Her wardrobe is bare, except for one pair of sensible flat lace ups for support and her balance, When what she really needs is a magical pair of crystal slippers.

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 If you would prefer to receive your copy of Thumb Print under plain cover please let our membership officer know. Call 01604 611855 or email membership@ mndassociation.org

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

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