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NEWS FROM THE MND ASSOCIATION COMMUNITY

SPRING 2022

A new chapter for voice banking Revolutionary new ebook is launched

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For mND

GAZE COMPATIBLE

, part of the

family

Our Association is here for you IN THIS ISSUE: PAGES 4-5 A revolution in voice banking. New ebook, I Will Always Be Me, is launched.

PAGES 6-7

The MND Association is determined that no one should have to face living with MND on their own, something which has been particularly true in these challenging times. Since the start of the pandemic two years ago, the Association has

What’s happening in 2022? A look at the research we are funding this year.

and their families, whether that’s

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through the provision of grants,

MND Matters – one year on. A look behind the scenes of the Association’s podcast. On the cover: Yvonne Johnson, who is living with MND, using the I Will Also Be Me ebook. Full story page 4.

continued to develop the support it offers to people living with MND

equipment loans, information or regular support groups and meetings in-person or online. Throughout the pandemic, our campaigners have worked tirelessly to raise awareness of the complex needs of people living with MND, challenging our decision-makers to do everything they can to make life easier for everyone affected. The success of the Scrap 6 Months campaign, which was run by the Association and our partners at Marie Curie, is an excellent example of this vital work. After three years of campaigning, which

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Reg. charity number 294354. Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/ thumbprint The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2022.

saw an incredible 75,000 people sign our online petition, the changes to the terminal illness fast-track are set to come into effect this month (April), making it much easier for people living with MND to claim the vital benefits they are entitled to, without the need for lengthy assessments. Thank you to everyone who took the time to get involved in this important campaign. It is also crucial that people living with MND can live in accessible homes that are safe and secure and through our Act to Adapt and Welsh Homes for MND campaigns we are working with local councils to improve timely access to adaptations and financial support. If you can, please get involved by helping us to spread the word. You’ll find more information on page 16.

Sally Light Chief Executive THUMB PRINT SPRING 2022

Voice banking: ebook heralds the start of a new chapter When I was diagnosed with MND I decided I can sit back and feel sorry for myself, or I can do something positive to help others. Being involved in I Will Always Be Me was absolutely brilliant – my family was there to support me, and we all had a fun day.

Michael Small, pictured with his partner, Mary

A revolutionary new ebook, which has been developed to allow people living with MND to bank their voice as they read the story aloud, has been launched. I Will Always Be Me is a short story written by New York Times bestselling author, Jill Twiss, and is written from the perspective of someone living with MND as they explain the condition to their loved ones. The book, created by companies involved in the MND Association’s Next Generation Think Tank, takes less than half an hour to read and is designed to be a shared experience between somebody who is living with MND and their family and friends. Once the story has been read, the recording is uploaded and transformed into a digital voice by voice banking specialists SpeakUnique, which can then be used with communication devices when it is needed.

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The MND Association will provide funding for people living with MND in England, Wales and Northern Ireland to use the book, thanks to donations from Dell Technologies and Intel. This free service extends to people living with MND in Scotland, with funding provided by MND Scotland. Yvonne Johnson, who is living with MND, and is pictured on the front cover, said: “The story in the book was so detailed but in a simplified way. So, by just reading the story my voice was banked immediately. “The story has a beautiful way of explaining the changes that may happen to my mobility while living with this condition, in a way that if I tried to explain it without the book, I would probably break down. Especially with my close loved ones. “The book is an amazing tool which can be used to explain MND in the most simplified way to both children and adults. Even someone who has never heard of MND, would definitely have a greater understanding of it rather than hearing an explanation from a medical professional.”

Michael, who is living with MND, was among a small group of people living with MND who were able to trial the book, and provide feedback, ahead of its launch in February. He said: “When I was diagnosed with MND I decided I can sit back and feel sorry for myself, or I can do something positive to help others. Being involved in I Will Always Be Me was absolutely brilliant – my family was there to support me, and we all had a fun day. I’m hoping this project will lead to a much better understanding and awareness of MND, not just for families and friends, but for the general public as well.” I Will Always Be Me is dedicated to the memory of Brian Moss, who died of MND in 2014. His son Stuart, Head of IT Innovation at Rolls Royce, was compelled to help improve the lives of other people affected by MND and joined forces with the MND Association to help create the Next Generation Think Tank in 2019. Dell Technologies and Intel were among the first to join the Think Tank and have been heavily involved in the development of the book. The Association’s Director of Care Improvement, Nick Goldup, said: “Voice banking is incredibly important for someone diagnosed with MND, but traditionally it could be extremely

time-consuming, laborious and often a very lonely process for the person taking part. We wanted to change that, and so we are incredibly proud that I Will Always Be Me is a completely different experience. People with MND have been at the heart of this project from the very start so it was important for us to develop something that was easy to use, engaging, and offer the opportunity to become a long-lasting, treasured resource. I Will Always Be Me is a brilliant example of how bringing together the Think Tank’s expertise and resources can improve the quality of life for people with MND and we can’t wait to find other ways to make a real difference.” You can find out more about I Will Always Be Me by visiting the website https://iwillalwaysbeme.com. You can also listen to Episode 13 of the MND Matters podcast which explains more about the book by visiting www.mndassociation.org/podcast Information about voice banking is also available from www.mndassociation.org/speech If you have used the ebook and would like to share your story we would love to hear from you. Get in touch by emailing editor@mndassociation.org.

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Motor Neurone Disease Association VOTING OPENS 30 MAY – 23 JUNE Elections will take place in June this year and in addition to resolutions, we will be inviting members to vote for candidates for election to the MND Association’s Board of Trustees. Details about how to take part will be issued soon and successful candidates will be appointed at the AGM which will be held on Monday 27 June. We encourage all of our members to use their vote in this year’s election.

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MND research: What Each year the MND Association funds the most promising, exciting and innovative research into MND and 2022 will be no different. Our research projects can be categorised into four broad themes that cover all aspects of MND – from ‘bench to bedside’. There are projects which try to identify the causes of MND and develop functional models to study the disease, while others aim to find unique biomarkers in people with MND to help speed up diagnosis and track progression of the disease. Some projects also hope to turn the most promising compounds into drugs that are safe and will treat the disease, and others aim to improve the quality of life and care of people living with MND. Here we describe a few of the projects we will be funding in 2022 and the potential impact of their work for people living with MND.

Understanding the impact of protein clumps MND is a complex disease and many of our funded researchers are investigating the different mechanisms of the disease. One of this year’s projects, a PhD studentship due to start in October 2022, will investigate protein clumps known as Bunina bodies, which have been identified in MND. These clumps are composed of a protein known as cystatin C which plays a key role in a mechanism used to remove faulty proteins, such as TDP-43. A known signature of MND, present in 97% of people living with MND, is the aggregation of TDP-43 in the wrong place. This project aims to better understand Bunina bodies and how they impact TDP43 clump formation. Understanding these mechanisms will give researchers a better understanding on how to stop or slow disease progression.

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Helping to decide if genetic testing is for you The research we fund doesn’t just delve into the biology of MND, it also investigates ways to improve the care given to a person living with MND and their family. It is known that mutations within our biological instructions (genes) can alter their function and these gene

changes have been associated with MND. It is also known that these mutations can be hereditary, meaning they can be passed on from parents to children. It is important to note that simply having a genetic change associated with MND does not necessarily mean a person will develop the disease. This is a complex and developing area which is not yet fully understood. Some of these genetic

at’s happening in 2022 We know that the MND community is eager to hear about the latest research and to see the projects that we are funding. We are actively revamping the research section of the MND Association website so keep your eye on the website and on Twitter (@mndresearch) for some exciting changes.

mutations can be identified through genetic testing which then opens up a lot of challenging questions about whether or not a person living with MND, or their family, should undergo the testing. There is often no right or wrong way to deal with and understand the ramifications of the test results. While there may be future benefits of genetic testing, such as being eligible for certain clinical trials,

there are a lot of factors that need to be considered. Dr Alisdair McNeill, alongside Professor Chris McDermott and Professor Hilary Bekker, are aiming to develop a decision aid which highlights the pros and cons of genetic testing, allowing more informed discussions with doctors to take place and helping a person make a decision that they are comfortable with. This decision aid aims to support doctors, people with MND and families, as well as helping to improve access to genetic testing.

Measuring neurodegeneration at home One of the most important aspects of finding new treatments for MND is being able to monitor the progression of the disease and see if the treatment has an impact. A PhD studentship, due to start in October 2022 at King’s College London, aims to develop and test a new and convenient way to regularly monitor neurodegeneration. The method will use non-invasive surface muscle recordings which will be used to analyse key features of neuromuscular activity, as well as the number of functional motor neurones at a given time. Knowing the difficulties some people living MND have regarding travelling to MND clinics, these assessments can be made at home, allowing more frequent testing. This method will not only bring about a greater understanding of how neurones change over time but could provide researchers with a validated way of tracking improvements from new drugs in clinical trials.

Providing vital resource to the running of clinical trials Clinical trials are vitally important in the fight against MND and while it is important to fund research into potential therapies themselves, it is equally important to fund staff to help run the trial. Nurses and clinical studies officers are essential in facilitating these clinical trials which is why we are funding a nurse/clinical studies officer for a year at

King’s College London. This additional resource will help to run the Lighthouse 2 phase 3 clinical trial. This trial is investigating the use of the anti-retroviral Triumeq drug in people with MND. They will also be involved in helping with TRICALS, a European clinical trials platform designed to accelerate the process of carrying out phase 2/3 trials in MND. Overall, this recruitment should help to improve the ability of the King’s College London trial centre to run trials, meaning more opportunities will be available for people living with MND. Our programme to prepare more care centres for clinical trials being supported with funds raised by MND Association patron Kevin Sinfield during his 7 in 7 Challenge.

Promoting innovation and collaborations Forming collaborations is fundamental in generating and developing new ideas, and as an Association we are passionate in creating spaces for researchers to form these new relationships. In January 2022, the Association helped to part-fund Neurohack, an ‘invention marathon’ held in London, Los Angeles and virtually, as part of the DEMON network. The event was designed to spark innovation, promote diversity, attract and educate the brightest talent and form new collaborations. The event hopes to spark new MND research ideas that help lead the way to a world free from MND. Participants spent four days working as teams to create tools using data science, machine learning (computer-based programmes) and artificial intelligence, to help identify treatments for MND. The winning UK team, led by MND Association funded researcher Dr Alfredo Lacoangeli, created a tool which helps to identify new drug targets and drugs that could be repurposed for use in MND. This idea will now receive a £10,000 pilot grant to continue its development. To find out more about the projects we are currently funding, visit our website www.mndassociation.org/ researchwefund THUMB PRINT SPRING 2022

New Chair Usman prepares to take over The Association’s Board of Trustees is preparing to welcome a new Chair this summer. Dr Usman Khan, who was co-opted to the Board and became Chair-Elect last year, will formally take over from the current Chair, Richard Coleman, at the Association’s Annual General Meeting (AGM) on 27 June. Usman was diagnosed with multiple sclerosis 25 years ago and is determined to use his own personal experience of living with a neurological condition to help shape the Association’s work. He is currently a senior adviser at FIPRA, a European public affairs consultancy and the Good Governance Institute, a UK-based consultancy and think tank. He is also a visiting professor in health management and policy at KU Leuven and a former executive director of the European Patients’ Forum. Since becoming Chair-Elect last year, Usman has been learning more about the Association and recently spent time with members of the North-West London Branch to understand more about the needs of people who are living with MND. He said: “I am honoured to be taking

Richard Coleman

on the role of Chair at such an important moment in the Association’s history. Thanks to Richard, the trustees and the directors, the Association is in great shape and – with the launch of our ambitious new promises – there is a growing sense of optimism for the future. “Since becoming Chair-Elect, I have been fortunate to meet a number of people living with MND and their positivity in such difficult circumstances takes my breath away. There is a race

Save the date for the Association’s AGM

now to deliver on their behalf and I am determined we will not let them down.” Richard Coleman, who will be standing down at the AGM, joined the Association as a volunteer in 2005 and was elected to the Board of Trustees in 2011, becoming Chair in 2018. Richard’s wife sadly died from MND in 2006. He said: “It has been an enormous honour to be Chair of the Association and to witness the way our whole community has responded to the challenges of the last two years. The strength and energy of our community is just extraordinary, and, together with the awareness raised by Kevin Sinfield, Rob Burrow and many others, it has helped us to achieve more than we ever thought possible. “It has been a privilege to work with our volunteers, my colleagues on the Board, our Chief Executive and the directors, who are an amazingly skilled and dedicated team. I would also like to pay tribute to the trustees I have worked with who are sadly no longer with us – Janis Parks, Mark Stone, Lena Marsh, Steve Parry-Hearn, Hilary Walklett, Brian Wilson, Shane Dickson and Andy Fowell – it was a tremendous honour to work alongside them and their contribution to our Association will never be forgotten.”

Thank you to everyone who submitted nominations for this year’s trustee election. Producing and distributing election packs All nominees will now go forward as candidates for the election which will is costly, diverting vital resources away from take place between 30 May and 23 June. In the coming weeks, all members will the work we do to support people living receive a voting pack either by post or email with details of how you can take with MND. As in previous years, we are asking part in the election either online or by post. You can also register to attend this members to help us by providing an email year’s AGM which will be held as an online event on Monday, 27 June. address so we can email the information you During the AGM, trustees and directors will come together to look back at need. Your email address will only be used what the Association has achieved on behalf of people living with MND and for this purpose and any future membership their families during 2021, outline our financial performance, celebrate the communications, helping us to save money. incredible work of the whole MND community and explain more about the You can change or stop these communications Association’s promises. at any time. If you have already provided your There will also be an opportunity to hear from members of the Board, email address you don’t need to do anything, but including the outgoing Chair, Richard Coleman and our new Chair, if you would like to sign up for your membership Dr Usman Khan. information to be sent by email in future. We do hope you will join us. Please visit www.mndassociation.org/agmnopost

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Thanks to Richard, the trustees and the directors, the Association is in great shape and – with the launch of our ambitious new promises – there is a growing sense of optimism for the future.

Usman Khan

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Our volunteers: Celebrat-

ing their work

First established in 1984 by Volunteering England, Volunteers Week is celebrated between 1-7 June every year. It’s a time to come together and celebrate all things volunteering, share experiences and recognise the fantastic contribution volunteers make to our Association. This year, we’re looking to inspire our volunteers by providing

optional learning and development opportunities and saying thank you in unique and special ways. We’ll also aim to feature some of our volunteers’ stories and open up the conversation about what volunteering means to you. To get ready for Volunteers Week, we’ll be heading to the NEC Birmingham on Friday 6 and Saturday 7 May for the Volunteer Expo. Come and join us to learn more about the volunteering opportunities on offer at the Association. You can get your tickets by visiting www.volunteerexpo.co.uk

If you have: Five minutes to spare… Get involved with the MND Association by spreading the word on social media and sharing one of our posts with friends and families. You can make a difference in the time it takes to make a cup of tea!

A day to spare… Come and visit us at the Volunteer Expo on 6 or 7 May at the NEC Birmingham and find out more about our volunteering opportunities, our five new and ambitious promises and how you can get involved in helping us achieve them.

Looking for a new challenge? We need you! Are you a good communicator? Do you enjoy helping people in your community and breaking down barriers? Looking to provide invaluable support to those in need? If you answered yes, then we have a new and exciting opportunity for you. We’re on the hunt for community champion volunteers to help us interact and learn from a variety of diverse communities. By carrying a strong message about the needs of people with and affected by MND, you’ll be integral to identifying and getting to know people in different local communities while spreading the word about the support we as an Association can provide. To extend the reach of the work you will be doing, you’ll be

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working in a dynamic capacity by assessing each situation and using the best means of contact to open up the conversation about MND. This may involve talking to people one to one, providing written information, attending a community gathering to share information about MND and the Association, using social media, or perhaps being a part of a social or community event. We’ll provide you with all the tools and training you need to get out there and champion the value of volunteering for the Association to the community and individuals and help recruit new volunteers. You’ll also have a dedicated Area Support Co-ordinator to help you along the way, as well as the full power of the Association behind you. To find out more, contact john.gillies@mndassociation.org or volunteering@mndassociation.org

‘Even though he has gone, he is still moving me’ A family has spoken of their anguish after their beloved husband and father died from MND in December last year.

Amarjit Chumber, pictured right, with his wife Chhindo and their children, Anil, Selina and Arayan

Amarjit Chumber was 58 when he died from MND having been diagnosed with the disease in 2019. His wife Chhindo said MND had ‘destroyed’ their family and described how she felt ‘exhausted and depressed’ after she put her career on hold to care for him. She said: “MND is a cruel disease, and you can never be prepared, or imagine, what it will do to a person. As his main carer, I found it exhausting, strained and tiring. I had no social contacts, and I never left my husband’s sight. “Amarjit was always happy, never once did he complain about his pain. He accepted MND and continued with his life as normally as he could. He lost total control of his body and was unable to do anything for himself within a couple of months of being diagnosed. I really struggled to accept his illness and I always questioned, ‘Why him, Lord? He’s such a kind, considerate and good person.’ MND is ruthless and it destroys families.” Amarjit was born in 1963 and came to the UK with his family when he was 15 months old. He married his wife, Chhindo in 1986 and worked for London Underground for more than 35 years. They had three children, Anil, Selina and Arayan. Chhindo first suspected something

was wrong in the summer of 2018 when Amarjit started to experience pain and problems with some tasks. She said: “He was sluggish and was having problems doing up his buttons. He complained of pain in his legs. He spent a lot of time going to the doctors, but they just said there was nothing wrong. Eventually he was diagnosed with fibromyalgia.

Amarjit was always happy, never once did he complain about his pain. He accepted MND and continued with his life as normally as he could. “His muscles were weak, and he was struggling to lift things. I knew he was getting worse as he was starting to have difficulty walking. Sometimes he would fall, my son found him once in the kitchen – his legs had just given way. “In January 2019, London Underground sent him to their own doctor who said he thought there was something seriously wrong. He went to hospital for tests and

was eventually diagnosed with MND in June.” After receiving treatment in hospital and at a care home, Amarjit returned home to be cared for by Chhindo and their children. He used an electric wheelchair and their home had to be modified to include a wet room, wider doors and a ramp. Chhindo said: “He went for respite at St Joseph’s Hospice, a break for us both which we really needed. The staff were really caring and Amarjit was really happy there. As a family, we took care of him and tried to make him as comfortable as we could.” Amarjit died in hospital on 3 December, 2021. A Tribute Fund set up in his memory has raised more than £5,000 and his son, Anil will take part in the Richmond Park Half Marathon in April to help raise awareness and money for the MND Association. Anil said: “I decided to run a half marathon, to remember and honour Dad, as well as to raise awareness and funds for the MND Association. Because he could not run, I will do it in his name. Even though he has gone, he is still moving me.” You can support Anil by visiting www.justgiving.com/anil-chumber THUMB PRINT SPRING 2022

Changes to benefit fast-track set to come into force this month

Looking back to 2018 when the Scrap 6 Months campaign was launched

From April it will be easier for people living with MND to claim the benefits they are entitled to. Following the success of the Scrap 6 Months campaign, which was run by the MND Association and our partners at Marie Curie, the Department for Work and Pensions announced in March that it would be introducing long-awaited changes to the Special Rules for Terminal Illness fast-track in England and Wales. Until now, people living with MND could only access the fast-track if there was ‘a reasonable expectation of death within six months.’ From 4 April, that rule has been changed to include people who are expected to live for the next year, giving more people living with terminal illnesses the chance to access the fast-

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This change will enable more people living with complex and unpredictable terminal illnesses such as MND to access the support they need swiftly and sensitively, without the need for a face-to-face assessment. track. The changes are being applied first to people claiming Universal Credit and Employment and Support Allowance. The Association’s Chief Executive, Sally Light, said: “This change will enable more people living with complex and

unpredictable terminal illnesses such as MND to access the support they need swiftly and sensitively, without the need for a face-to-face assessment.” The Scrap 6 Months campaign was first launched in 2018. Since then, more than 75,000 of our supporters have forced the Government to sit up and take notice, resulting in this important change. It is now essential that the Government moves quickly to ensure this change is applied to other benefits including Personal Independence Payment, Disability Living Allowance and Attendance Allowance. This will require changes to legislation, and the Association will continue to call on the Government to ensure that this reform is implemented in full as soon as possible. For more information visit www. mndassociation.org/campaigning

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Act to Adapt: Majority of councils still failing to provide the right support More than a year on from the start of the Association’s Act to Adapt campaign we believe many councils across England are still failing to provide the support people with MND need. With the second phase of the campaign now underway, we want to urge councils to help improve the services they provide by introducing a fast-track process for people living with MND and removing the need for a financial assessment for Disabled Facilities Grants for adaptations up to £5,000.

To help us achieve this, we are working with groups of volunteers who will campaign to improve the delivery of housing adaptations in their areas. They will work alongside health and social care professionals and build relationships with councillors and council staff to ensure the voices of people living with MND are heard. There has already been some success. In Sefton, the Wirrall and Dartford, councils have changed their policy in line with the

Voice banking project shows us at our innovative best The launch of the ebook I Will Always Be Me, which is designed to guide people living with MND through the voice banking process, shows our Association at its very best. By working in partnership with global technology companies as part of our Next Generation Think Tank, the Association has helped to create a beautiful and very

important resource, something that will bring comfort and support to so many at a difficult and emotional time. People living with MND have been involved in the book’s development from the very start, providing their own guidance and insight, for which we are truly grateful. As I prepare to stand down as Chair in June, I want to take this opportunity to thank you all for everything you do to support the Association and the work it does to support people living with MND and their families. Every action – no matter how big or how small – is important and valued, and really does help us to make a difference. Because of you, our Association is stronger. Because of you, we will beat MND.

Richard Coleman, Chair of the Association’s Board of Trustees To read more about I Will Always Be Me, turn to pages 4 and 5 Usman prepares to take over as new Chair – turn to pages 8 and 9

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Association’s recommendations. Looking ahead, the campaign will continue to grow as more local groups are formed, more relationships with councillors are established, and more evidence is gathered. The recent APPG on MND was dedicated to Act to Adapt and included commitments from a number of MPs to get behind the campaign. With both local authorities and national government now engaged, we hope the next few months will result in significant policy changes across England, leading to quicker interventions and a higher quality of overall service provision for people living with MND. To find out how you can get involved visit www.mndassociation.org/ campaigns

Carers’ Project: An update At the end of 2021, the Association carried out a piece of work to better understand the experiences and needs of those who provide unpaid care for a loved one living with MND and to evaluate the impact of our Carers’ Champions pilot supported by the Bupa Foundation. Thank you to everyone who took the time to share their experiences with us through our survey, focus groups and interviews. In total we heard from almost 250 carers of people living with MND on a range of topics, including how caring responsibilities can affect health and wellbeing, the impact of the COVID-19 pandemic on carers, and difficulties accessing effective support. The findings have been analysed and we are now in the process of putting together a report that will set out recommendations for change that we can campaign on. We hope to be able to publish the report very soon.

Housing adaptations fast-track Senedd members vote in favour Members of the Welsh Senedd (MS) have voted in favour of introducing a non-means-tested fast-track to help people living with MND access housing adaptations more easily. In December, members of Senedd (MS) voted in favour of the motion, introduced as part of the Association’s Welsh Homes for MND campaign, which will see the end of financial assessments for small and medium-sized adaptations. While the news has been welcomed, the change will not be implemented immediately by every local authority in Wales. The Minister for Health and Social Services, Eluned Morgan MS, said that Wales had a ‘comprehensive’ programme of housing adaptations with an annual spend of £60 million. She added

that an additional £1 million would be given to local authorities to avoid them having to use means-testing for medium adaptations. While acknowledging that the adoption of the new policy would take time, she said that she expected ‘the vast majority, if not all local authorities’ to have adopted the no means test by April 2022. Speaking after the debate, MND Champion Peter Fox MS said: “It’s shameful that people living with MND across Wales have been trapped in inaccessible homes because the process was too slow and prevented them from gaining the necessary support in time. Thankfully, we’ve come a step closer to bringing this complex and unfair system to an end.”

It’s shameful that people living with MND across Wales have been trapped in inaccessible homes because the process was too slow and prevented them from gaining the necessary support in time.

Working in coalition to raise awareness The MND Association partnered Motor On Cymru and the My Name’5 Doddie Foundation to raise awareness of MND at the Wales vs Scotland Six Nations match in February. Rugby legends, including Rob Wainwright, cycled more than 500 miles in 48 hours from Edinburgh to Cardiff to deliver the match ball, while raising money for the My Name’5 Doddie Foundation and awareness of MND. We are calling on the Welsh Government to improve MND services and facilitate fair access to clinical trials across Wales. We are also working with our partners at Marie Curie to urge the Welsh Government to ensure the End-of-Life Care Programme is delivered as promised. A petition has been launched and is available to sign by visiting https://petitions.senedd.wales/petitions/245102

NHS Continuing Healthcare in Wales The Association is looking to hear from people in Wales who have applied for NHS continuing healthcare. We want to get a better understanding of your experiences of continuing healthcare including the delivery and quality of the package of care, once awarded. To share your experience of NHS continuing healthcare in Wales, please email campaigns@mndassociation.org

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My father raised awareness of the condition of MND as well as being a proud patron of the MND Association for several decades. As a family, we have been honoured by our link with the charity and hope we have been able to offer important help and support over the years. Lucy Hawking

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Remembering Stephen Hawking

and the legacy he left to the world Four years ago, on 14 March, 2018, the world lost one of its most celebrated scientists, and the MND Association lost its most long-standing supporter. Professor Stephen Hawking, the theoretical physicist, cosmologist and author, was diagnosed with MND in 1963, at the age of 21, while doing a PhD at the University of Cambridge. In 1978 he agreed to become the patron of the MND Patients’ Association later to become the MND Association, a position he held for 40 years, until his death in 2018. Today, the MND Association is delighted to still work closely with his family, who – for many years – have given their time and profile to support the charity on a personal basis. They allowed us to be involved with the premiere of the film The Theory of Everything, which was based on the diaries of Stephen’s wife Jane, and the family has attended

Oscar-nominee Felicity Jones with Tim Hawking at a Credit Suisse screening of The Theory Of Everything

many events on our behalf over the years, including a dinner at Buckingham Palace in 2015, a special question and answer session and charity screening of The Theory Of Everything for our corporate partner Credit Suisse in 2017 and a garden party for 300 branch and group volunteers held at Boughton House in Northamptonshire to mark the Association’s 40th anniversary in 2019. Even after Stephen’s death, the auction of his iconic wheelchair and other personal items by auction house Christie’s, plus the publication of his book Brief Answers to the Big Questions raised funds to benefit our work. The Association has partnered with The Stephen Hawking Foundation on key set-piece events which the Foundation has generously supported financially, including The Stephen Hawking Memorial Lecture at the International Symposium on ALS/MND – which is run by the Association, and attracted 1,500 people from 44 countries in December 2021 – and the Annual Stephen Hawking Foundation MND Lecture organised by The Royal College of Nursing, which has been educating health care professionals specifically about MND for the past two years. In addition to improving the care offered to people with MND, The Stephen Hawking Foundation has also made contributions to the field of public engagement with science, in particular for young and non-specialist audiences. Most recently Robert, Lucy and Tim Hawking announced they had donated Professor Hawking’s scientific papers and personal possessions to the nation, with the aim of ensuring his legacy lives on and becomes accessible to the widest possible global audience in order to inspire the scientists of the future. They have donated the contents of his office, including some of his custom-

Association patrons Stephen Hawking and Benedict Cumberbatch at a Buckingham Palace dinner

built wheelchairs, photographs, books, communication equipment, and office furniture as well as a whole catalogue of beautiful decorative science inspired items to the Science Museum. At the same time, they also donated Professor Hawking’s scientific archive, a massive treasure trove of more than 10,000 papers, to Cambridge University Library who will make the contents accessible to scientists, researchers and students worldwide. This enormously rich and important scientific archive will be preserved along with the archives of Sir Isaac Newton and Charles Darwin. The Association’s Chief Executive Sally Light said: “It has been a pleasure and an enormous privilege to work so closely with the Hawking family over so many years and I am grateful to them and the trustees of The Stephen Hawking Foundation for their support with some of the MND Association’s most important initiatives.” Lucy Hawking said “My father raised awareness of the condition of MND as well as being a proud patron of the MND Association for several decades. As a family, we have been honoured by our link with the charity and hope we have been able to offer important help and support over the years.” THUMB PRINT SPRING 2022

Celebrating a year of MND Matters

It’s been a year since the MND Association launched its new podcast MND Matters, bringing information and support to our audiences in an exciting new way. Created by a small group of Association staff, a new episode of MND Matters drops every month and features guests from right across the MND community. Since its launch, the podcast has tackled a wide range of important subjects from dating to bereavement as well as offering a behind the scenes look at the progress being made in MND research. Chris James is the Association’s Director of External Affairs and regularly appears on MND Matters as a host. He said: “The podcast has offered a new and convenient way for our community to engage with the information and support

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we offer, and we are delighted that it continues to be so wellreceived by our listeners. “Most importantly of all, MND Matters helps us to give people living with MND a voice and the freedom to discuss the issues that are most important to them. We are so grateful to all of our guests for speaking so openly and honestly about their experiences. Our conversations are often emotional but always very honest and I would encourage anyone who hasn’t done so already to download the latest episode and give it a try.” You can download all 12 episodes through our website at www.mndassociation.org/podcast or through your usual podcast platform. We would love to hear what you think! If you have feedback, ideas for future episodes or would like to get involved, contact the MND Matters team at communications@ mndassociation.org

In case you missed it… Episode 1: MND Association patron Kevin Sinfield talks to Steph and Nick about his epic 7 in 7 Challenge and is joined by rugby league fan Jonathan Griffiths, who is living with MND. Episode 2: Steph and Nick are joined by Megan Donoher who explains the impact her dad’s diagnosis had on herself and her family. Since recording this episode Megan’s dad has sadly died, but we are grateful to Megan and her family for allowing us to share their story. Episode 3: Volunteers Liz Groundland, Mark Gately and Julia Peckham talk to Steph and Nick about Volunteers’ Week 2021 and the ways in which people could get involved. Episode 4: Hosts Steph and Nick are back and are joined by Sue Lodge, who is living with MND. Sue explains more about why she chose to bank her voice while speech and language therapist, Richard Cave answers some common questions about voice banking. Episode 5: The Association’s Director of Research Development, Dr Brian Dickie answers your questions about MND research. Hosts Becky and Nick are also joined by leading MND expert, Professor Martin Turner.

Episode 6: Hosts Steph and Becky are joined by Matthew and Nathalie who talk openly about losing loved ones to MND. They explain how they are now using their experiences as a force for good. Episode 7: Becky and Nick talk to Cath and Ian Muir about the emotions they have felt since Cath was diagnosed with MND in 2014. They are also joined by Dr Sian Hocking and Dr Emily Mayberry who deliver specialist psychological support to people who are affected by MND. Episode 8: Chris Johnson, former Assistant Chief Constable at West Midlands Police talks to Steph and Becky about continuing to work after being diagnosed with MND. Episode 9: Mike talks to Suzanne and Chris about finding love with Zoe on the Channel 4 programme First Dates. You can read more about his story by turning to page 23. Episode 10: In this episode, we take you behind the scenes of the Association’s International Symposium on ALS/MND – the biggest research event of its kind in the world. Episode 11: Fundraisers Jez, Tamara and Matt talk to Chris about their best bits, the challenges and why it’s so important to fundraise.

‘Timely access to adaptations is so important’ Episode 12 of MND Matters features Tom, who is living with MND, and his partner Alice, in conversation with our hosts Chris and Becky. They are joined by Specialist Occupational Therapist, Jane to discuss housing adaptations and the issues people living with MND face. After being diagnosed with MND, Tom and Alice made the decision to move from their flat into a bungalow which was more accessible.

Working with people with MND day in and day out, I’m so aware of the need for timely access to adaptations. Tom explained: “We were living in a flat, but it had an internal staircase, so it simply wasn’t practical and we arranged to move into a bungalow. Alice looked after everything and arranged financing and grants.” Alice said: “When we were in the flat, we got an estimate for a chairlift which would have been a short-term solution. It was £6,000 so we thought it was better to spend that money on

moving rather than on something short-term because there wasn’t enough room for a wheelchair to move around upstairs. We moved in before we did the work and that was really important in our decision-making. We changed all the carpets to hard floors, which was really sad, but incredibly sensible. At the time we had a mobile hoist, which to push across the carpet was a nightmare so the occupational therapist organised a ceiling track hoist and we got rid of the carpet.” Jane also explained what a good adaptation might look like. She said: “A good adaptation meets the person’s long-term needs, that’s really important. [A housing adaptation] should consider what they’re going to need right at the very end and needs to be timely. Working with people with MND day in and day out, I’m so aware of the need for timely access to adaptations.” The episode also discusses the MND Association’s campaigns Act to Adapt and Welsh Homes for MND and ways in which you can get involved. You can find more information on our website at www.mndassociation.org/campaigning To listen to the episode in full visit www.mndassociation. org/podcast. THUMB PRINT SPRING 2022

International Symposium will be broadcast live across the world The world’s leading MND researchers will once again come together online for the 33rd International Symposium on ALS/MND, organised by the MND Association. Following the success of the previous two symposia, and the on-going challenges caused by the global pandemic, the decision has been made to hold the

event virtually once again from 6-9 December, 2022. While the latest COVID-19 omicron wave is starting to recede in some countries, it has also demonstrated the speed at which new variants can spread across the world. As a not-for-profit organisation, we are acutely aware of our responsibility to ensure charitable funds are used wisely in supporting people affected by ALS/MND and in the search for effective treatments. Last year’s event was broadcast from the Association’s offices in Northampton

and attracted 1,500 delegates from 44 countries. The second virtual event saw the introduction of interactive elements, such as the People’s Choice Poster Prize and a photobooth to show the faces behind the screens. In the coming months, the programme will be developed and details on how to register will be made available. To keep up to date with the latest news head to https://symposium. mndassociation.org

Fundraisers celebrate their own magnificent seven After watching Association patron Kevin Sinfield complete seven marathons in seven days in 2020, hundreds of our fundraisers have been inspired to take on 7 in 7 challenges of their own. We’ve seen our fundraisers do some incredible things and push themselves to the limits to support people who are living with, and affected by MND. Among them is Martyn Clarke, a keen rugby fan, who decided to run 12 miles for 12 consecutive days as well as seven half ironman triathlons in seven days. He said: “I always wanted to repeat something which pushed the human endurance limit – including the mental aspect of endurance. This is how I view Rob Burrow both as a player and in his current situation, he put his body on the line week in week out for years and is now battling what is thrown against him day in day out.” Martyn’s initial target was to raise £7,777 but with the backing of the Mayor of Manchester, Andy Burnham, Leigh Centurions and the entire rugby community he ended up raising more than £22,000.

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Martyn Clarke

Richard Brailsford

Richard Brailsford recruited friends, family and members of his local community to join his ‘MND Army’ in memory of his father, Chris who died from MND and Audrey Hartigan who died in 2012. Richard said: “We don’t want others to go through what Chris and Audrey went through. We want to remove just one word from the sentence, ‘There is not a cure for MND.’” Richard’s challenge galvanised an entire community with pubs, salons and other

local businesses getting involved. The ‘MND Army’ took on a myriad of challenges, from 10k every day for seven days, a North Cotswolds off-road 50k cycle event and even conquering Snowdon, to 7,777 keepie uppies and selling Hamma beads. The Brewmish Pub Company started a 50p for MND campaign, asking people to add a voluntary donation of 50p to their bill. For more information about 7 in 7 and the ways you can get involved, visit www.mndassociation.org/7in7

‘Zoe has brought light into the darkness’ A couple, who met on the Channel 4 programme, First Dates, are looking to the future together after one of them was diagnosed with MND shortly after appearing on the hit show. Mike Sumner decided to audition for First Dates in 2019 after hearing they were on the look-out for new contestants. He was paired with Zoe from Sheffield and in March he announced they had got engaged during a trip to Florida. He explained: “I had been watching First Dates and at the end of one of the episodes it said, ‘if you’re single and ready to mingle, get in touch.’ I’d been single for a while and people say I have a good sense of humour, so I decided to apply. A few weeks later I had a phone call to say they were interested in me, and I was invited to audition.” Mike met the show’s production staff in a series of video calls and interviews and was delighted to be selected. He said: “I was amazed. I had never expected to get that far, and I just thought, whatever happens now, I can console myself with the fact that at least I had a go!” He was then invited to travel to Manchester to film his date in the famous First Dates restaurant alongside suave maître d’ Fred Siriex and Merlin, the barman. He said: “It’s exactly as you see it on screen. The production staff brief you and then they film you walking into the restaurant where you meet Fred and Merlin makes you a drink. You have a bit of a chat, you get settled in and then your date appears.” In Mike’s case, the lady in question was Zoe. While the couple got on really well during their date, they initially went their separate ways, promising to stay in touch. Mike said: “Just three weeks after we had filmed the date, the country went into lockdown. I was in Grimsby, she was in Sheffield so it was tricky. We exchanged

You can listen to Mike’s story, told in his words, on the MND Association’s podcast MND Matters. You can download it from www.mndassociation. org/podcast or your usual listening service.

numbers and vowed to stay friends. At around the same time, I noticed a slight reluctance in my left foot. I left it for a few months, not wanting to put any additional pressure on the NHS, but went to see my doctor who referred me for an MRI scan. I was eventually diagnosed with MND on 11 November, 2020. My grandma had MND so I understood what it meant.” After sharing the news with his family, Mike contacted Zoe to break the news. He said: “She was really supportive. She asked me what it meant, and I explained it all to her. She really helped to keep my

spirits up.” Once restrictions had eased, Mike and Zoe decided to meet up and quickly realised they were falling in love. The couple are now looking forward to getting married. He said: “Zoe has got me through some really difficult stuff and has brought light into the darkness. We’re both really happy.” If you’re living with MND and would like more information about sex and relationships visit our website www.mndassociation.org/relationships THUMB PRINT SPRING 2022

Lee, centre, pictured with his team at the wheelchair marathon

‘I’m not living with MND, MND is living with me’

www.mylittlestarphotography.co.uk

With a terminal illness comes great responsibility. You need to be positive through adversity – everyone else around you will follow.

Lee pictured with his family

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A wheelchair half marathon has helped to raise £1,500 for the MND Association’s Cambridgeshire Branch. The event was organised by Lee, who is living with MND, as part of his fundraising initiative, MND Elite. On the day, Lee’s family and friends came together to raise £3,000 which will be split between the Association and the Arthur Rank Hospice in Cambridge. Lee was diagnosed with MND in 2019 and has been determined to remain positive for his wife and their two children. His mantra has always been, ‘I’m not living with MND, MND is living with me.’ So far, Lee’s fundraising activities, which include a two-day virtual cycle and row, have raised more than £12,000, which has been used to help fund the Association’s young persons’ and quality of life grants. He said: “The day was a huge success with an amazing turn out. I want to say a massive thank you to all my team who gave up their time to support me and the families who came down. Each and every one of you should be so proud of yourself, without you none of this would have been able to happen. We raised a massive amount for two fantastic charities.” In addition to raising funds, Lee has also written a book called MND Navigate: Your Mindset Matters, which charts his journey with MND from diagnosis to having a PEG (Percutaneous Endoscopic Gastrostomy) fitted. He said: “I paused the book for a while as I felt really for the first 17 months I hadn’t been dramatically impacted by the disease. The book has been read by a few friends and they have said it left them crying, laughing and inspired. Realistically, I hope to have the book published by spring.

“I have one chance of being terminally ill, I intend to make the most of it! “With a terminal illness comes great responsibility. You need to be positive through adversity – everyone else around you will follow.” “MND does not stand for motor neurone disease, it stands for motivation, no negativity and determination,’ and the most dominant quote in my book is, ‘Don’t live for today, it’s too short term. Just live.’”

MND is with us for life

When John Hardwick’s wife Philomena died from MND in May 2021, he turned to writing to help him make sense of what had happened. Here, in his own words, John explains how writing his autobiography is already helping others affected by this devastating disease. “Philomena was the love of my life, and my life will be forever impacted by her loss to MND. “Sadly, she passed away last May, just 18 months after Author John Hardwick, pictured with his wife Philomena who died from MND last year the first symptoms of MND and eight months from an accurate diagnosis. what began as an autobiography and She finally lost her battle on a Sunday eventually turned into a diary which I’m evening. It was late, too late to make any continuing to write. arrangements – we were also affected by “In November 2021, I thought I had Covid restrictions – so I sat with her all reached a turning point in my grief, and night. In the calm stillness, I drew strength it was time to publish my book, Joined from her and wrote a tribute to her for her at the Hip. My aim was to help others in cremation ceremony. The my situation, but to my words just flowed out of surprise, from feedback, me. I am and always will not only has my book be proud of them. resonated with those left “In the dark weeks behind – the survivors following Philomena’s of MND – but also from passing I became more young carers who feel and more withdrawn, that they can better and I could feel myself understand the effects sinking into depression. that the disease has on I sat in despair for three family, friends and those days doing absolutely who selflessly look after nothing. those unfairly affected by “’This can’t go on,’ I a terminal illness. thought to myself. It was “I hope to update my in that moment that I book later this year after decided to start writing I have gone through

all the anniversaries that will be ‘firsts’ since Philomena left us – Christmas, her birthday just after Christmas, New Year celebrations, my birthday in January, our wedding anniversary in February and, of course, the anniversary of her passing this coming May. The new chapter will start with the comment: MND doesn’t stop when our loved ones leave us. It’s with us for life. All proceeds will be donated to MND research.” If someone close to you has died from MND, you can find the latest information and support at www. mndassociation.org/bereavement or call MND Connect on 0808 802 6262. If you’re caring for someone who is living with MND, turn the page to find out more about the ways the MND Association can support you.

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If you care, we care too

If you care for someone who is living with MND or Kennedy’s disease, the MND Association is here to support you too. It doesn’t matter how old you are, whether you are a partner, family member or friend, or if you provide full or part-time care – we are here for you. It’s important to remember that health and social care services will describe you as a carer even if you don’t recognise yourself this way. Using the word ‘carer’ can open doors to the support you may need. You can ask about a carer’s assessment from your local authority in England and Wales, or your local health and social care trust in Northern Ireland. You can discuss concerns and find out about the support they offer in your area. Read more about this and support from professional care workers on the next page. As one carer told us, “The one thing I would add from my own experience, would be to stress the importance of getting the carer’s assessment as early as possible.” If you register as a carer with your GP surgery, the team there can help with timely appointments and health checks if caring demands take their toll. The Association offers a wide range

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of guidance for carers, and you can find out more by visiting our web hub for carers and family members at: www.mndassociation.org/carers. If you need specific information about grants you can learn more at www. mndassociation.org/financialsupport. The Association’s Benefits Advice Service can also help you identify and claim benefits you may be entitled to as a carer and you can find more details at www. mndassociation.org/benefitsadvice

As the disease progressed, I took on all the household roles as well as caring for my husband. Looking back, I should have asked for more practical help… I felt guilty if I complained, as I felt I was letting him down – so I rarely discussed my feelings with others. If you are looking for support closer to home, our regional services provide a range of local support and group meetings in-person and online and more information is available at www.mndassociation.org/localsupport Our online forum has a section for carers

EVERYONE GETS THE CARE THEY NEED WHEN THEY NEED IT

at https://forum.mndassociation.org Our main guide for carers, Caring and MND: support for you has been updated. It doesn’t focus on caring for others, but ways to care for yourself. We recognise this isn’t easy for carers to do and hope this guide helps. One carer told us, “As the disease progressed, I took on all the household roles as well as caring for my husband. Looking back, I should have asked for more practical help… I felt guilty if I complained, as I felt I was letting him down – so I rarely discussed my feelings with others.” Our wider information includes guidance on telling others about MND, sex and relationships, complementary therapies, emotional support, employment options, how to access social care, support for children and young people, and help following bereavement. You can find out more about the latest updates by turning the page. You can also contact our helpline MND Connect on 0808 802 6262 or via email at mndconnect@mndassociation.org if you need a chat. We’re here to listen. Carers Week runs from 6-12 June this year and we are delighted to help raise awareness for all those facing the demands of a caring role. You can find out more at: www.carersweek.org

Meet the professionals:

CARE WORKERS

Resources for care workers If you have a care worker, we have information and resources to help them learn about MND and provide appropriate care: Care worker online module Our free online module introduces MND, its symptoms, and the support a care worker can give to a person with MND. The module is split into seven units and can be completed over a number of sessions. Visit www. mndassociation.org/careworkers to find out more. Caring for a person with MND: A guide for care workers Our main booklet for paid care workers. It includes detailed information and practical tips on the care of people with MND. Contact MND Connect on 0808 802 6262 to order printed copies, or download a copy at www.mndassociation.org/careworkers

A large number of healthcare professionals are involved in the care of someone with MND. In this series, we discover more about the valuable support they provide and how you can make the most of the services offered. Care workers are paid professionals who help people living with health conditions and disabilities manage many aspects of daily living including personal care, eating, drinking and mobility. They can also help people to access their community facilities and maintain their social life, leisure activities and hobbies. Care workers are sometimes referred to

as support workers or personal assistants. They can work in settings such as care homes, in people’s own homes, or in community settings such as day services. If you think you would benefit from support from care workers, Adult Social Care Services can provide a needs assessment to look at how your disability affects your daily life and decide if you are eligible for support. They can also assess your unpaid carers’ needs to ensure they are well supported. If you meet their criteria, they will work with you to develop a care and support plan that lays out how your needs will be met, including support from care workers. Social care is means-tested, so a financial assessment may be arranged to work out how much you may need to contribute towards your support. You can choose to have your care

services arranged and managed by Adult Social Care Services or you can receive an agreed amount of money for services as regular direct payments into your bank account, which you use to organise and pay for services of your own choice. To arrange an assessment, contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland. Find out more Information sheet 10B – What is social care and how does it work? This information sheet provides detailed information about how to access social care support, including care workers. Contact MND Connect on 0808 802 6262 to order printed copies, or download a copy at www.mndassociation.org/publications THUMB PRINT SPRING 2022

£100,000 gift

will help to boost grants A £100,000 donation, made to the MND Association by the foundation led by rugby legend Doddie Weir, will be spent on helping to ease the financial burden experienced by many people living with MND. The My Name’5 Doddie Foundation, which was founded by Doddie Weir after he was diagnosed with MND in 2017, has donated to the Association each year since 2018, helping to support our grants programmes. In total, the foundation has donated £770,000. Michael is living with MND and recently received a grant to enable him to continue playing the guitar. He said: “Since being diagnosed with MND in 2009, my legs have gradually become much weaker and therefore my

support right now to those living with and affected by MND. Our comprehensive grants programme is there to help people living with MND and their families in a number of ways, which can make a real difference when they are desperately in need of support. We are incredibly grateful to the My Name’5 Doddie Foundation and know that this generous donation will help so many people in the MND community.”

CARE INFORMATION UPDATE

Caring and MND: support for you Our main guide to support carer wellbeing has been updated. Find this resource and an interactive version at: www.mndassociation.org/carerguide You can also access each section as a separate document. 2B – Kennedy’s disease This information sheet has been updated, providing an overview about the condition Kennedy’s disease. Find this resource and more at: www. mndassociation.org/emotions Voice banking and message banking animation Our animation about voice banking has been updated. You can find all of our introductory ‘What is…?’ animations at: www.mndassociation.org/animations Web page updates Lots of our web pages about care are

mobility has been adversely affected. My arms however remain relatively unaffected at this time which means I can still indulge in my main hobby, playing the guitar, while sitting down. “Last year, I had a fall and unfortunately landed awkwardly on top of my acoustic guitar. Needless to say I was quite upset! The MND Support Grant has been an absolute godsend and, as well as easing my considerable levels of anxiety, means I can purchase another instrument and continue to play and make music as well as raise awareness and funding for the MND Association.” Sally Light, Chief Executive of the MND Association, said: “MND will only be defeated through collaboration and partnership, and so we are delighted our care grants partnership with the My Name’5 Doddie Foundation will be entering its fifth year. While we are working hard to find a cure for this devastating disease, it is vital we can provide tangible

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being revised and updated. Explore www. mndassociation.org/about-MND for basic facts and www.mndassociation.org/ localsupport for guidance on living with MND and other support. Finding your way with bereavement Our booklet about grief support has been revised. See the booklet and more about help during bereavement at: www. mndassociation.org/bereavement Care information finder Try our new search feature on our website. It’s designed to help you find information by need and list resources by subject. See the Care information finder at www. mndassociation.org/careinfofinder You can find all of our resources at: www.mndassociation.org/publications alternatively, you can order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org Our information development is

accredited through the PIF Tick scheme. This means our resources are evidenced, user tested and reviewed by experts. Trusted Information Creator

Would you like to help with our information development? We work alongside people with MND or Kennedy’s disease, and their carers, to develop and improve our information. We have lots of work planned in 2022. If you would like to get involved, you will have opportunities to feed into a range of different content and formats. 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 more, contact: infofeedback@mndassociation.org

News

from our networks

Our Association is made up of people from all walks of life, communities and backgrounds and we want everyone to feel safe, supported and able to make a difference. In short, we want to create an inclusive community. Here, we focus on the work being done in relation to community engagement and across our networks, which have been created for people living with MND, volunteers and staff, including the ways in which you can get involved. Community Engagement

The older LGBT+ community

MND does not discriminate. Although it is more prevalent in older people it affects people equally regardless of their ethnicity, faith, culture or sexual orientation. The Association is determined to be a fully inclusive organisation and as part of this we want to identify, understand and address barriers to participation in different communities. Over the next couple of years we will be: • Analysing data to understand the make-up of local communities and the extent to which people living with MND who are known to us are representative of each community • Creating resources which will empower staff and volunteers to engage with, understand and address the needs of local communities • Working directly with those communities in greatest need. Adam Brittain is the Association’s new Community Engagement Partner (CEP) and is particularly interested in talking to and learning from people from different communities. If you would like to talk to Adam, he can be contacted at adam.brittain@mndassociation.org

Older members of the Lesbian, Gay, Bisexual & Trans+ community may face challenges, particularly in relation to health and social care. We have teamed up with our friends at Opening Doors and their Pride in Care initiative to bring volunteers an online module that will help you understand LGBTQIA+ people’s needs. The module, Pride in Care Frontline Workers Course, will take an hour to complete and can be found at https://prideincare.thinkific. com/courses/Frontline-Workers-Course. A series of interactive workshops will take place later in the year.

The LGBTQIA+ Network Group February was LGBT+ history month, and what better time to reflect on where we are and where we have come from. There is no denying that we have come a long way in terms of LGBT+ rights and visibility in the past couple of decades, but there is still a long way to go. As a network, we have been looking at ways of raising awareness of current LGBTQIA+ issues among staff and volunteers, ensuring we are providing inclusive support, and that staff and volunteers have the tools needed to help people access suitable and affirming care.   As always, we are very keen to hear from you, our MND community, as to what matters to you. If you are part of the LGBTQIA+ community, we’d love to have you on board! You can reach us by email on LGBTQIA@mndassociation.org.   And the letters stand for? Lesbian, Gay, Bi-sexual, Trans, Questioning or Queer, Intersex, Ally or Asexual

BAME becomes DEEM Historically, the name Black, Asian and Minority Ethnic (BAME), excluded people from more diverse backgrounds and cultures. As an Association, we wanted a name that was much more inclusive and not limited to people of colour. We decided the name DEEM would represent a much wider spectrum of people and promote inclusivity. DEEM stands for: Diversity: The word ‘diversity’ encompasses a range of values and cultures that people across the world may hold. It signifies that we all understand and acknowledge the benefits of having people with different backgrounds and the potential they bring and that we value each other’s differences. Equity: Equity embodies fair and equal treatment, ensuring that everyone feels welcome to participate and contribute. Ethnic Minority: Everyone feels valued regardless of the background they come from and that they belong to the Association. On behalf of the MND Association, we would like to encourage our members, volunteers and people affected by MND to get in touch at DEEM@mndassociation.org. We look forward to welcoming you.

Disability and long-term conditions forum We are looking at the best way of creating a forum and ensuring that it does not replicate or duplicate existing services and support for people with MND. Do please let us have your views at disability@mndassociation.org

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Round Britain Challenge is a complete Triumph!

More than 125 classic Triumph cars took part in The Round Britain Reliability Run last October, raising £103,000 for the MND Association. The cars and their crews from Club Triumph set off from Knebworth House in Hertfordshire and travelled up to John O’Groats and back down to Land’s End before finishing back at Knebworth House within 48 hours. Since the event was first created in 1966, it has been run 27 times and more than £700,000 has been raised to support UK charities.

Pub firm serves up a new fundraising partnership The MND Association is proud to announce a new 12-month fundraising partnership with the UK’s largest pub company, Stonegate Group. Stonegate Group operates well-known high street brands including Slug & Lettuce, Be at One, Walkabout and Popworld as well as unbranded pubs in rural, suburban and city centre locations. It has a portfolio of more than 4,500 sites which range from leased and tenanted to managed pubs. We will be supported by the 1,300 managed pubs in the UK and their pub support teams based in Solihull, West Midlands. The partnership launched on 11 April and Stonegate is hoping to raise in excess of £250,000 to support the work of the Association.

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Make a date to support us in 2022 and beyond For many of our fundraisers, taking on one challenge just isn’t enough. Last year many of our amazing supporters showed their dedication by taking on a series of events and challenges over the course of an entire year. Following her father’s diagnosis in January 2018, Stephanie Miller raised funds and awareness for the Association, but in 2021 she decided she wanted to take it a step further. She explained: “While dealing with my dad’s life changing diagnosis, running has become my church.” Stephanie set herself the challenge of running 10k every day in 2021 – a total of 2,268 miles. It took her 304 hours and cost her six pairs of trainers, but she raised an amazing £7,500. She said: “This disease hasn’t only ripped through my dad’s life, but also that of my heartbroken mum and of course, mine. I figured I could either be trapped by my everyday reality or I could free myself by doing something worthwhile. Running provides

me with that space to empty my mind and decipher my thoughts. No matter how arduous or painful the challenge was, nothing can compare to the destruction and anguish MND causes to families across the world.” The Mayor of Luddenden in West Yorkshire, Stephen Parker, is living with MND. He was diagnosed in July 2020. He explained: “My village traditionally has its own mayor. The role involves raising money for local charities, schools and people who may need financial help. When I became mayor in 2021, I decided to raise money for the MND Association. The annual mayor-making ceremony and village fete was the first event on our calendar. On that day, we turned our village blue with everyone wearing MND Association t-shirts and we raised a recordbreaking £6,716.91.” Since then, the village has taken part in a pumpkin competition and held its annual Christmas lights switch-on, helping to raise even more funds. Alexander North dedicated a whole year to running a minimum of 1,000k (620 miles) Stephanie Miller

Alexander North

after his father was diagnosed with MND in the summer of 2020. Alexander said “With Covid lockdown restrictions making life difficult for everyone, I wanted to do something from a distance to support a charity who are instrumental in supporting my parents, and also show my dad I’m thinking of him every day, through rain, sleet wind and snow, embracing a physical challenge which is a fraction of the challenge he faces now on a daily basis and with such dignity.” Alexander finished the challenge with days to spare and raised more than £13,000. If you’d like to take on a year-long challenge of your own you can sign up here www.mndassociation.org/ fundraiseyourway

Stephen Parker and residents of Luddenden

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Fighting MND with every step

For me, this challenge has been more than just step counting. I have started the year fitter and healthier. I have improved my mental health. Kirsty Linacre

Sarah Sargent, who is living with MND and took part in the 15,000 steps challenge

Every step counted more than ever in January when our fundraisers raised an amazing £200,000 by walking 15,000 steps a day. More than 1,000 people took part in the Facebook challenge, braving the winter weather to increase their step count and help raise awareness and funds at the same time. Sarah Sargent, who was diagnosed with MND in December 2020, was among those who took part. She said: “I absolutely love walking, so when I saw the 15,000

Our amazing fundraisers helped to raise £200,000

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steps a day January challenge I leapt at the opportunity to raise some funds and awareness for the MND Association. I want to help other people who are suffering from this terrible disease which robs families of hope and dreams. When I was diagnosed, the MND Association immediately got in contact and offered support to me and my family, including my two teenagers, and offered technology to help me communicate.” Sarah got involved as part of her wider challenge to walk all 630 miles of the South-West Coastal Path, from Dorset to Minehead. So far, she has raised more than £13,000 with the steps challenge boosting her fundraising by £1,500.

When the challenge got tough, participants supported each other in the Association’s 15,000 Steps a day in January Facebook group. Kirsty Linacre, whose mum Marian died from MND said: “The Facebook group, and support from fundraisers and participants, was amazing. It really kept me going when I was struggling. For me, this challenge has been more than just step counting. I have started the year fitter and healthier. I have improved my mental health. I have proved to myself and others that anything is possible if you try. I have reconnected with friends, which after the last two lonely years, has been amazing. But most of all I have honoured my wonderful mum, auntie and grandad who all died from MND.” Kirsty raised more than £1,000 for her mum’s tribute fund. The £200,000 raised far exceeded expectations and will be used to provide support and improve care for people affected by MND, fund campaigns to raise awareness and vital research. Want to join our next Facebook challenge? In May, we’re asking our fundraisers to complete 2,000 burpees during the month. While it will be tough, participants will have the support of the Burpee Challenge Facebook group to help get them through. Anyone who raises more than £150 will earn themselves a special medal to recognise their fundraising efforts. To find out how you can get involved visit www.mndassociation.org/ facebookchallenge

Join us at this event to remember With rolling hills, picturesque villages and stunning views across the Gloucestershire countryside, it’s hard to find a route as picturesque as the Cotswold Way. Every year, #TeamMND walkers – and some runners – join the Cotswold Way Ultra Challenge to enjoy the stunning views and raise money for the MND Association at the same time. Scott Bedding took part last year, after being inspired by Rob Burrow and Kevin Sinfield. He said: “I decided to get a charity place with the MND Association because ever since I did my 7 in 7 Challenge, I had read more and more about MND and it hurt. I wanted to make a small difference. The race was brilliantly organised, some were walkers, others like me were runners. The event itself was great; spectacular scenery, varied conditions and fantastic people.” Kate Fabian is looking forward to taking on the Cotswold Way for the first time this year. She said: “I’ve already been walking and bought some new hiking boots! I am looking forward to spending a day in the fresh air and challenging myself to walk the furthest I ever have in one day. I lost my mum to MND two and a half years ago. It took her so long to be diagnosed and there was so little we could do to help her. She lived in a regional town

Kate Fabian

Scott Bedding

in Australia, and I found it hard to understand all that was going on from over here in the UK. I hope that my fundraising efforts will help to support other people and their families in coming to terms with this horrible illness.”

At a glance: Event: Cotswold Way Challenge Date: Saturday, 25 June Location: Cirencester, Gloucestershire Distance: Various routes from 24km (15 miles) to 100km (62 miles) Sign up: www.mndassociation.org/cotswoldway

Sign up to join the team and you will receive: • Fundraising pack including #TeamMND running vest or T-shirt • Dedicated support from a member of the fundraising team • Training plans and access to an exclusive challenge app from event organisers Action Challenge • Free food and drink throughout the challenge • Fully signposted route and Trek Masters to guide you on the day

Raffle win is just the ticket! Thanks to the support of our members, the Association’s Christmas raffle raised an incredible £145,000. Now, with summer approaching, we’re giving you the chance to win some amazing prizes, including a top prize of £5,000, as well as helping to support the Association and the work we do on behalf of people living with MND. To be in with your chance of winning, please return the enclosed stubs with your payment and completed reply slip in the freepost envelope provided. Alternatively, you can enter

online at https://mnda.raffleentry.org.uk or over the phone on 0330 002 0342. Raffle entry closes on Friday, 8 July, and the lucky winners will be drawn a week later. As well as buying tickets yourself, you could also sell them to friends, family, colleagues, and neighbours. If you’d like more raffle tickets, please call our raffle line on 0330 002 0342. Regulations mean that you must be over 16 years of age to play. Entry is open to all UK residents excluding those in Northern Ireland, Guernsey and the Isle of Man.

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Festive fundraising

Life-size advent calendar opens the door Windows in homes across the village of Nutfield in Surrey were transformed into a life-size advent calendar to help raise money for the MND Association over Christmas. Organiser Sarah Abellan divided the village into 20 different areas with each street, road or close revealing their display on a different day. Villagers were then invited to take part in a host of festive activities, including a competition to hunt the teddy bear and a number of raffles and events. A local taxi driver even joined in the fun by wearing an MND Association t-shirt for a month, encouraging his customers to donate coins to the collecting tin in his cab. Sarah explained: “With the first lockdowns in 2020, life seemed very different and for a lot of people it was very isolating. I felt we all needed something to look forward to, so I floated the idea of doing the advent windows on a Facebook page I run for the village. It went down well, and people expressed an interest in making it an annual event. “In 2021, I contacted Dave Setters, who is living with MND, and asked if we could use the advent windows to raise money for the

MND Association. He set up a dedicated fundraising page for the advent windows and again, villagers put on events to raise money by organising cake sales, selling mulled wine, crafts and organising raffles. The advent windows really brought the community together.” In total, the village helped to raise £4,000 for the East Surrey Branch of the MND Association.

With the first lockdowns in 2020, life seemed very different and for a lot of people it was very isolating. I felt we all needed something to look forward to, so I floated the idea of doing the advent windows on a Facebook page I run for the village.

The advent calendar event in Nutfield, Surrey helped to raise £4,000 for the Association’s East Surrey Branch

New key worker role offers a lasting legacy A dedicated key worker is helping to provide care and support to people living with MND on The Wirral. Liz Stear, who is based at St John’s Hospice in Clatterbridge, is helping people living with MND and their families to understand their physical, emotional, spiritual and psychological needs and put them in touch with the most appropriate care professionals. Her role has been funded by a generous £100,000 legacy which was left to the Association’s Wirral Group. The group’s Chair, Debbie Williams said: “We are thrilled this key worker post is now up and running. “While it is still quite early days, Liz has already shown herself to be the ideal person, she has the necessary experience and skillset, as well as the gift of empathy which is absolutely vital for her role. We

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One person’s generous legacy has enabled us to partner with our local MND Association group to help more people living with this most complex and challenging disease.

are delighted to be working alongside the hospice team in this venture.” Chris Sutcliffe, Wirral Hospice St John’s Clinical Director said: “One person’s generous legacy has enabled us to partner with our local MND Association

group to help more people living with this most complex and challenging disease. “As a single local point of contact, Liz is exactly the right person to liaise with people throughout their MND journey, to help facilitate their decision making and care planning. “We’re delighted that the Wirral Group chose to work with us and that we have been able to add Liz to our caring team of professionals and increase timely access to other hospice services for people living with MND.”

MND Care Co-ordinator role is a lasting legacy People living with MND in Yorkshire will be able to access care and support through an MND Care Co-ordinator after the NHS Foundation Trust agreed to fund the role permanently. The Care Co-ordinator role in Calderdale and Huddersfield was originally created as a pilot project inspired by Nick Smith from Halifax and Michael Martin from Holmfirth who both died from MND. Thanks to funding from The Nick Smith Foundation, the Calderdale and Huddersfield NHS Charity together with a generous legacy left to the West Yorkshire Branch of the MND Association, where Michael had been an active member, that ambition soon became a reality. Michael’s wife, Jill, said: “Speaking to others living with MND following Michael’s diagnosis in 2012, it was clear they had access to specialist clinics whereas there was a void in Huddersfield and Calderdale. He never saw the same person twice, leaving him feeling frustrated and unsupported. He was determined to start campaigning for a specialist co-ordinator in this area. “We were delighted that the post became a reality, and we were fortunate enough to be invited to two virtual clinics

Nick Smith’s wife Rachel, is pictured with Jill Martin, right and MND Care Co-ordinator Beth Macdonald, centre

before Michael died, which had all his support specialists in one place – leaving him feeling very buoyed up by the experience, and rightly proud of the legacy. “I am delighted this position has been made permanent and am certain that it will change the lives of those living with this dreadful condition, and those who care for them.” The Association’s Service Development Manager, Sal Hastings said: “People with MND can often be in touch with up to 20 different health and social care professionals at any one time, which is why a co-ordinated multidisciplinary approach is vital. We are delighted the NHS Trust has recognised the effectiveness of the MND Care Co-ordinator role in Huddersfield and Calderdale and with their support, people affected by MND in these areas will continue to benefit from this essential service.”

"I'm leaving a gift in my Will because I want to see an end to MND." David

A gift in your Will could help us find the missing pieces of the MND puzzle. Get in touch with the Legacy team to request an information pack 01604 611898

legacies@mndassociation.org

www.mndassociation.org/wills

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Frances’ striking offer a glimpse into A photographer, who is living with MND, has taken part in a special online exhibition. Frances Underwood was invited to take part in the event by her friend, Penny Piddock, who came up with the idea to help raise funds for the MND Association. The event was supported by members of Dorchester Camera Club, who also took part. The exhibition featured Frances’ striking images based on the Napoleonic Wars, alongside work from other well-known photographers. Frances explained: “I love creative photography, that is, making art from compositing photos.

“The Napoleonic Wars have long held an interest for me, ever since I discovered my great, great grandfather was involved. When our daughter told me she and her husband were taking part in the bicentenary of the Battle of Waterloo I knew I had to be there too. In June 2015, 30,000 re-enactors, 100 cannon and 300 horses created one of the biggest re-enactment events ever on the original battleground at Waterloo, Belgium. I wanted to make a panel, telling the story. “I attended the rehearsal in Wollaton Park, Nottingham, but soon realised standing in one spot behind the ropes would not get me the images I wanted, so we booked a battlefield tour with

Supported by Dorchester Camera Club I came up with the idea of an online event. I talked to friends, all award-winning photographers, to ask if they would join me in arranging a morning of photography where they could show their work and talk about it alongside Frances’ images. Penny Piddock

Frances’ photography inspired by The Napoleonic Wars

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photos

the past

best seats, right next to the VIP stand for the main event. There were only three stands. Sadly, the best seats were sold. By the time it came to pass we were about a mile away from the action, but I did manage some distant background shots. Not to be outdone, there was to be another big event the following year in Hole Park, Kent. This time I wanted to be inside the ropes. ‘OK,’ said The Napoleonic Association, ‘As long as you’re in kit.’’” Frances was then able to capture some amazing images, including the ones featured on these pages. She said: “My first image, On Picket Duty, is a Prussian soldier. I carefully cut him out in Photoshop and placed him in front of

one of the battle scenes, adding toning to make it look like an old painting. The second, Rifles at Waterloo, depicts three riflemen. I placed them in front of a farm at Ligny in Belgium, adding a flare from another gun. The long grass is from Kent and the smoke, a cloud. This image won a gold medal in exhibition. They are both part of a larger collection. Sadly, I am no longer able to do photo compositing like this because of MND.” Penny said: “Supported by Dorchester Camera Club I came up with the idea of an online event. I talked to friends, all awardwinning photographers, to ask if they would join me in arranging a morning of photography where they could show their work and talk about it alongside Frances’ images. In doing so we could raise awareness of MND and, instead of selling tickets, we would accept donations for the MND Association.” Frances’ images featured in the event’s finale, during which she spoke about living with MND in a recorded speech using Predictable. The event, held in January, raised £1,817. To see more of Frances’ images search for Frances Underwood Photography on Facebook.

Photographer Frances Underwood, who is living with MND

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Thank you TO ALL OUR FUNDRAISERS £700 Helping to make a difference: A huge thank you to the Malcolm Gunter Foundation for all they have done to raise money in Malcolm’s memory. Malcolm was a property developer in Bristol who died from MND in 2018. The foundation was formed by friends of Malcolm who continue to fundraise to support other families affected by MND through the Bristol and Bath MND Group. Their generous support every year helps fund local support grants, carers’ support grants and young persons’ grants meaning that people get the help they need when they need it.

Golf team unites: Huge thanks to Cold Ashby Golf Club Captain Barry Mitchell, Lady Captain Anne Hopwell and Senior Captain Colin Mutton for supporting us during 2021. Members of the Northamptonshire club helped to raise a brilliant £4,182.17. Barry even completed the gruelling Snowdonia 360 cycling challenge and raised more than £2,000 to add to their fundraising pot.

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.

£20,570 In memory of Sue: Alexanders’ Pharmacy raised £20,570 for the Association’s Merseyside Branch in memory of their colleague Sue Alexander, who had MND. Among other fundraising, the team organised a sponsored 5km run around Sefton Park. Andrea Deary, who took part, said: “Sue was more than just a colleague, she was a friend, sister, mother and wife. We wanted to raise money in her name to support local people affected by MND.”

£4,182

‘We are family’: Val Mitchell and her husband David, who is living with MND, are so proud of their family. Last year, their son Paul and grandson Harry organised a fantastic 7 in 7 Challenge, while Paul completed the London Marathon in October. Meanwhile, daughter Nicola organised a rugby event and granddaughter Hayley has been busy painting MND pebbles which Val hid while she took part in a Mission 5000 challenge. Hayley also gave a presentation to her school about MND.

£40,000 Tribute match for former player: When Johnny Hughes died five years after being diagnosed with MND, his family wanted to raise money in his memory to help others affected by the disease. Johnny was a keen Gaelic football player for Clonoe O’Rahillys, so the club and his family organised a tribute match which raised £40,000. Johnny’s younger sister, Niamh, later added to the fundraising pot by asking friends and family to donate to her Facebook fundraiser in lieu of gifts for her birthday. So far, more than £52,000 has been raised in Johnny’s memory.

Pedalling for pounds: Many of us will have spent Boxing Day on the sofa tucking into a box of chocolates and flicking through the TV channels, wondering what leftovers are in the fridge. For Tim and Carolyn, however, it looked very different as they undertook a gruelling virtual cycle to the top of Mount Everest. The pair began the challenge at 7am and spent all day cycling an incredible 8,848m. They live-streamed the challenge, which was viewed by thousands of people, and raised more than £10,000.

£10,000

If you’ve been inspired to take part in a fundraising event for the Association, there are loads of ideas to make a difference at www.mndassociation.org/fundraising 36

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£14,000

Fundraising success is music to our ears!: Chris Jordan, who is living with MND, is better known as a musician and for the albums he has kindly produced in aid of the MND Association. Before Christmas he also took part in the MND PJ Day at the Eden Valley Hospice, with the support of his carer Leanne who raised spirits as well as funds and awareness.

For Deb: When Rob Callaghan’s good friend Deb was diagnosed with MND last year, he decided to organise a gig to raise money for the Association who are supporting her. Deb and her husband Ray were regulars at gigs around Reading, so their friends at independent bar Purple Turtle were happy to host the event. Rob was delighted to raise £3,321 to show his support for Deb and was pleased she could come along on the night and enjoy the atmosphere.

£14,356 Finance firm’s fundraising success really adds up: The team at Imperial Chartered & Cornerstone Finance Group decided to support the Association as their chosen charity during 2021. They were inspired by their clients Markus and Christine, who have completed a series of fundraisers themselves since Christine was diagnosed with MND. The company has raised £14,356 so far, by hosting a golf day among other events, and are continuing their fundraising efforts throughout 2022.

£1,085 Festive fundraiser: Reay Newman has been an Association visitor (AV) for 17 years. When the pandemic meant she couldn’t support families face-to-face, she decided to turn her hand to fundraising instead. Reay said: “A friend and I had an idea to sell Santa Logs! We busied ourselves making as many as we could, always on the lookout for logs while walking. We displayed them on our local branch stall at the Longley Park School for Boys’ craft fair in December, along with second-hand jewellery, plants and Christmas cards. The Santas stole the show and we made £1,085.” Reay is pictured here with fellow AV Jean Nicholson-Smith.

£3,321

£700 Congratulations Charlie!: Ten-year-old Charlie raised more than £700 by running 26.2 miles during January. He completed the marathon challenge to show his support for his grandmother, known to him and his brother Harry as Nene, who has MND. The pandemic has meant Charlie has not been able to visit his Nene, who lives in Cyprus, to make special memories. Charlie’s mum Lyndsey said: “I am so proud of him for completing this challenge. He ran his socks off!”

£30,100 ‘I wanted to make Dad proud’: Emmett O’Hara completed an epic challenge to run 10 half marathons within 10 days. On finishing his last race, he decided to continue his fundraising efforts and take on a full marathon just a few weeks later! The 23-year-old raised an incredible £30,100 in support of his dad, who died from MND. He said: “MND took away more than just my dad, it took away my best friend. I wanted to take on this challenge to make him proud.”

£3,600

Players come together for former teammate: A team of former Hull City footballers reunited to raise £3,600 for the Hull and East Yorkshire Group. A black-tie lunch was held to raise money in honour of former player Mark Cooper, who was diagnosed with MND in 2019. Mark is pictured with Andrew Hancock and Kevin Hara from the Hull and East Yorkshire Group.

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

‘I’m skiing again – iand it’s brilliant’ “I was diagnosed with MND in April 2021, and, among all the thoughts that go through one’s head at a time like that, a small voice wondered if I’d ever be able to have another ski trip. “Let me put that into context: I learned to ski aged 32 – I’m 65 now – and have loved it ever since. I’ve been lucky enough to be able to ski for two or three weeks every winter since then. It’s always been hard to convey to a non-skier just how good skiing is. For me there are four aspects: the skiing, the majestic scenery with crisp clean alpine air, and the company of good friends associated with good food and drink. “In April 2021 I had just endured my first winter for years without a ski trip, thanks to Covid. That was bad enough. As summer passed and my arms and

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legs began to weaken, I was faced with the prospect that even when the slopes became accessible again, my body might not be up to it. Then my good friend Colin reminded me of some gadgets that had been used by another friend of his, Nigel, who had also been a keen skier and who had also suffered from, and died of, MND some years ago. They are essentially a sort of springy exoskeleton that you strap to your legs called Ski Mojos. “They have been around for some years, and I believe were initially designed for skiers rehabilitating from knee injuries. You wear them under your ski trousers, they attach to a harness at the top and your ski boots at the bottom, with velcro straps round your legs. The results were a revelation. My quote at the time was, ‘It feels like having normal legs again.’ I had tried the indoor slope without help a couple of weeks before, and while I found I could still ski, my legs needed frequent rests and I tired quickly. Now, with my mojos on, my endurance was essentially back to normal. They are not cheap, but my lovely wife was kind enough to buy them for me as a combined birthday and Christmas present. “I have now returned from my second week in the French Alps – not made easy by the various Covid regulations, but that’s another story – and have enjoyed both trips immensely. Walking in ski boots, and poling on skis, are both difficult, but the actual skiing feels hardly any different to my usual – in that all my old faults are still there, but heck, I can do it, and that is just brilliant. “The photos show me with some of the guys who acted as my ‘ski butlers’ on these

Ewan Deas, who is living with MND, skiing in the French Alps

trips and made it all possible. There are others, many thanks to you all. I hope that my experience of these aids gives hope to any other skiers out there. “A couple of things I would say. I think they would really only work for someone who could already ski, although a high level of competence wouldn’t be essential; also while I was able to put them on myself, I was lucky that I always had company with me and I did need some help in attaching them to, and detaching them from my ski boots, which is easy with good hands and arms but not easy with mine. “If anyone wants more detail of my experiences with the mojos, feel free to make contact via editor@mndassociation. org.”

Irish Association:

More information about MND Cork University Press in collaboration with the Irish Motor Neurone Disease Association (IMNDA) has recently published Living with Motor Neurone Disease: A Complete Guide edited by Dr Marie Murray. It explains what MND is, how it is diagnosed; how it affects the individual and the family; the psychological dimensions of the condition; the caregiver experience; living with the condition and facing the future too. It explains how to talk to children and adolescents, how to tell family and friends, how to adapt working conditions and home life and it describes all the supports; medical,

psychological technological and practical help to cope with the daily impact of living with MND. In summary, it is an invaluable resource to inform, educate, prepare and signpost people toward practical everyday support and clinical expertise. Dr Marie Murray, Clinical Psychologist and Systemic Family Psychotherapist is an author and editor of many books on psychological and family issues. The IMNDA has cared for and supported people living with MND and their families since 1985. Mike Collins, Cork University Press

Editor’s note: If you’re looking for information in England, Wales and Northern Ireland, the MND Association has a range of resources available, including our guide, Living with MND. Our guides and information sheets can be downloaded free from our website at www.mndassociation.org/support, or ordered from our helpline, MND Connect on 0808 802 6262

A note from the editor I really hope you have enjoyed this latest edition of Thumb Print and found it both useful and informative. As you will have seen, we’ve given Thumb Print a fresh, new look making it easier to read and find the articles that really matter to you. Thumb Print is constantly evolving, and we want to work with our members to make sure the magazine continues to be representative of our community and contains the right balance of news from the Association, stories from people living with, and affected by MND, and up-todate information. Your comments – both good and bad – are always very welcome and if you are interested in getting more closely involved, either by writing an article or by volunteering to support the development of Thumb Print, we would love to hear from you. As always, you can reach me at editor@mndassociation.org or via Twitter @MNDAeditor.

About us The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. As a charity we rely on voluntary donations. Our vision is a world free from MND.

Social media

Online forum A place for people affected by MND to share experiences and support each other. https://forum.mndassociation.org

mndassociation mndassoc mndassoc

MND Connect

Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 802 6262 mndconnect@mndassociation.org Membership

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

Get involved

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

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