Thumb Print - Winter 2021 by MND Association

The magazine of the Motor Neurone Disease Association

Winter 2021

‘Everyone needs a friend like Kev’ Rob Burrow receives New Year Honour after bravely sharing his story and inspiring his friend to raise £2.5 million

For mND

GAZE COMPATIBLE

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, part of the

family

4-5

From Northampton to the world! All the news from the Association’s first online Symposium.

6-7

‘Everyone needs a friend like Kev’ How Kevin Sinfield touched the nation’s heart and raised more than £2.5million in seven days.

12-13

‘Being a trustee is an amazing privilege’ Four trustees share their stories and encourage you to get involved.

18-19

New counselling service is launched More support for families who are affected by MND.

20-21

One woman, one bike, 1,000 miles How Nathalie Dawson supported the Association during lockdown.

38-39

Your letters Letters from across the MND community.

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Reg. charity number 294354. On the cover: Former rugby league star Rob Burrow is pictured with his friend Kevin Sinfield. Read more about their extraordinary story on pages 6 and 7. Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2020.

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

welcome… To find a cure for MND, the Association and its many partners around the world need to work closely together, sharing ideas and seizing any opportunities that are available to us. The International Symposium on ALS/ MND, which the Association has run on behalf of the global MND community for the past 31 years, is a vital part of that ongoing conversation. The three-day event is always a highlight of the year as researchers from across the world come together to discuss their work, analysing data and forging important working relationships. And this year was certainly no exception. A record breaking 1,800 of the world’s leading scientists and clinicians from 48 countries signed up for the 2020 event. For the first time in its history, the Association’s Symposium was held exclusively online, broadcasting to the world from a Covid-secure studio based inside our Northampton offices. More people than ever took part, including people living with MND, to learn about the tremendous progress being made and the ways they can get involved in the global fight against MND. There is no doubt in my mind that this is an important, exciting and very pivotal time for MND research, with many experts now sharing the view that effective treatments could be within touching distance. I am absolutely determined that we should harness this momentum and turn the dream we all share into reality. For too long now MND research has been under-funded and late last year, the Association and its partners from MND Scotland and the My Name’5 Doddie Foundation came together with a new campaign #UnitedToEndMND to urge the Government to invest £50 million over the next five years. With this investment, the Association and its partners around the world can pave the way for more clinical trials, improve the way they are run and fast-track research into the treatments people living with MND so desperately need. We all have a part to play in ensuring this campaign is successful and you can find out more about can get involved today on page nine of Thumb Print and by visiting the website at www.mndassociation.org/ unitedtoendmnd Together, we can.

Sally Light Chief Executive

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Bringing the world together at

ROADMAP for how scientists might treat and cure people living with MND is now being formed after years of uncertainty – that’s the view of Professor Kevin Talbot, one of the leading experts in MND research who took part in the Association’s International Symposium on ALS/MND in December. The Symposium was the first in the Association’s history to be held online and attracted more than 1,800 delegates from 48 countries – a record for this prestigious and important event. Professor Talbot said that over the years the content of the Symposium had shifted ‘dramatically’ towards therapeutics, a move he described as ‘enormously exciting’. He explained: “You can see the direction of travel. It’s gone from a cloud of uncertainty to a sort of roadmap for how we might treat and cure motor neurone disease. That’s enormously exciting. I think that’s happened in relatively recent years and you can see that from the meeting. The attendance numbers have gone up and more engagement from the pharmaceutical industry means we have made tremendous progress. I think the International Symposium is really part of the process, it’s the way people come together, and it’s recognised as the premium meeting in the field each year. I’ve been very grateful to be part of that.” Important progress Research updates discussed during the three-day event included revolutionary approaches to drug discovery, new understandings of how neurons handle cellular stress, new ways of monitoring patients at home and improving patient-reported outcome measures. There were updates on Phase 2/3 clinical trials and exciting glimpses of how antisense oligonucleotide technology could be applied beyond the rare genetic forms of the disease.

The Symposium’s principal sponsor, Cytokinetics, hosted its 5th Annual Symposium on 8 December, the day before the International Symposium began. Three leading MND researchers and clinicians, Dr Benjamin Brooks, Professor Ammar Al-Chalabi and Dr Caroline Ingre talked about Past, Present, Future – the Journey to Advance Innovations in ALS. They discussed how

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diagnosis and prognosis techniques had changed over the past 25 years, and the impact this has had on clinical trial inclusion. They said it had become clear that people living with the disease fall into different ‘sub-groups’ – this may be something as simple as how fast their disease is progressing compared with others or something more complex. This is important for the future of clinical trials and the development of personalised medicine, as it means new drugs can be targeted at people who will benefit from them most. Drug delivery and assessment of effectiveness is also being re-evaluated. At the Symposium itself, the eagerly awaited clinical trials session brought news of three trials – NurOwn, AMX0035 and levosimendan. Dr Merit Cudkowicz and Dr Ralph Kern presented the results of the Phase 3 clinical trial of NurOwn, a cell-based investigational therapy that uses mesenchymal stem cells to promote and support the repair of nerve cells. They explained that NurOwn didn’t meet its primary endpoint (set in advance of the trial to show the impact of the treatment and its effectiveness) of an improvement of at least 1.25 points per month in the ALS Functional Rating Scale – Revised (ALSFRS-R) score which is used by doctors to assess progression and severity of MND. Secondary endpoints were also not met. Some potentially interesting results were seen in biomarkers found in cerebralspinal fluid, which is important as they are indicators of disease progression and response to treatments. This data will be evaluated further. Dr Cudkowicz also presented results from the levosimendan Phase 3 study. Unfortunately, this did not meet its primary endpoint, which was an improvement in slow vital capacity, the volume of air expired through an unforced manoeuvre, in broad populations of people with ALS. However, a trend towards slower progression in ALSFRS-R was seen in some participants and the results of an open-label extension phase, which should be available in 2021, may promote further

Virtual Symposium Symposium is a ‘landmark achievement’

understanding of how levosimendan could be useful to people in these sub-groups. Dr Sabrina Paganoni presented the results of the CENTAUR trial of a drug called AMX0035 – a combination therapy of phenylbutyrate and taurursodiol to keep the nerve cell functioning properly. Results from the trial showed that participants who were given the drug saw an increase in survival of around six and a half months compared to people on a placebo. Participants were then given the option to receive the drug as part of the ongoing open-label extension study, which allows researchers to gather data over a longer period. The AMX0035 trial was truly an MND community collaboration. For the first time, Dr Paganoni presented a new exploratory analysis of this data using the ENCALS (network of ALS Centres in Europe) survival prediction model to produce individual survival predictions for the CENTAUR participants by comparing with over 11,000 European patient records. This suggested that the survival benefit of AMX0035 may be even greater than first thought but will need to be confirmed in future studies. Poster sessions Giving researchers the opportunity to showcase their work with the wider MND research community with a poster allowed more exciting and innovative work to be shared. During the Symposium, almost 400 ePosters were presented in our ePoster Hall which delegates could visit at any time. The posters were each supported with a ‘lightning explainer’ video to summarise their research. Poster presenters were also given the unique opportunity to present and discuss their work live. If you would like to learn more, the key highlights from the Symposium can be found through our interactive Periodic Table of MND Research at symposium.mndassociation.org/periodictable. You can also read our Research Blog which can be found at mndresearch.blog

FTER months of planning, the Association’s International Symposium on ALS/MND took place online for the first time in its 31-year history. Just eight months after being forced to cancel the Symposium in Montreal due to coronavirus, a dedicated team of technicians, staff and MND experts welcomed the world to the International Symposium on ALS/MND on 9-11 December from a Covid-secure studio at the Association’s offices in Northampton. The move from a traditional Symposium to a fully virtual event was a huge undertaking – with the programme completely rewritten to suit an online platform. But once again the research community embraced the opportunity to collaborate with more than 1,800 delegates joining the three-day event from 48 countries. The Association’s Director of Research Development, Dr Brian Dickie said: “Moving to an online event after organising a face to face conference for so many years was a major challenge and involved a lot of hard work as well as a huge amount of new learning in a very short space of time. “We’ve been delighted by the positive and enthusiastic feedback from delegates. They have, of course, commented that it doesn’t replicate all the advantages of an onsite event, in particular the networking between researchers, leading to the generation of new ideas and collaborations, but there are definitely some new aspects that we’ll want to take into future symposia.” The success of the Symposium also created a buzz on social media and among those who attended. Seth Christensen, who is living with MND and was a Patient Fellow said: “For me, living in an ALS body that’s increasingly isolated, I start or tend to think of my experience as somehow mine alone. The greatest personal benefit of the Symposium was to remind me of the breadth of research and global nature of what I’m experiencing personally.” Greig Joilin, Postdoctoral Research Fellow at the Hafezparast lab at the University of Sussex tweeted: “This year’s virtual #alsmndsymp has been an amazing experience and the closest to an in-person conference that I’ve had this year.” Arpan Mehta, Lady Edith Wolfson Clinical Fellow and Rowling Scholar at the UK Dementia Research Institute, University of Edinburgh said: “Many congratulations on a landmark achievement of a conference this year. I have been to several conferences over the pandemic and this one was the best by a mile – the platform was superb and the programme stellar.” Plans for this year’s Symposium in Basel, Switzerland are now well underway. You can read more updates on our website at www.mndassociation.org/symposium. www.mndassociation.org

‘Everybody needs It was the story that captured the nation’s hearts just days before Christmas and led to more than £2.5 million being raised on behalf of Rob Burrow and the MND Association. Here, Thumb Print explains more about Kevin Sinfield’s epic challenge and what happened next.

HEIRS is a friendship forged on the rugby league pitch brothers in arms, fighting together in the fierce, white heat of battle. It’s a friendship that has endured for the past 20 years, from the moment Rob Burrow and his former captain Kevin Sinfield first met on the hallowed Headingley turf as juniors with the Leeds Rhinos right through to the present day. In the intervening years they have lifted trophies together, enjoyed huge success with their teammates and fought every battle together – as one team and one family. Now that team is together once more, strong and united, but this time in the face of a very different opponent. Just over a year ago, Rob, a former scrum half, was diagnosed with MND and, together with his wife, Lindsey and their young family, they very bravely shared their story. In the months that followed, Rob and his family have taken every opportunity they can to raise awareness of MND, appearing on BBC Breakfast in front of millions of viewers alongside former Scotland rugby international Doddie Weir OBE and former footballer Stephen Darby, both of whom are also living with MND. A testimonial match, held at Headingley in January, was broadcast on BBC One and in September, Rob and his family captured the nation’s hearts once more when they featured in a moving documentary My Year with MND on BBC Two. At the same time, they have helped to raise thousands and thousands of pounds for the MND Association, but nothing could have prepared them for the response they received to Kevin’s 7 in 7 Challenge which took place in December. Inspired by Rob’s number seven shirt, Kevin pledged to raise £77,777 for Rob and his family and the MND Association by running seven marathons in seven days. “While there are no effective treatments and no cure for MND at the moment, we don’t believe it’s incurable – just that it’s under-funded.” By the end of the challenge, which took place in freezing conditions just days before Christmas, Kevin had raised more than £2.5 million. Once again, Kevin, Rob and their families appeared on BBC Breakfast to talk about their amazing achievement and the difference it would make to Rob and others who are living with MND. Kevin said: “I’m overwhelmed. It’s unbelievable and I’m so happy we got it done. After the first day I did worry we’d bitten off more than we could chew but the donations and the support just fuelled us. It’s overwhelming.”

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Rob Burrow and his wife Lindsey pictured with Kevin Sinfield during his 7 in 7 Challenge

Chris James, the Association’s Director of External Affairs said: “The amount raised has exceeded everyone’s expectations – and is still going up – and for that we are incredibly grateful. “The next steps are for us as an Association to sit down with Kevin and his team, and Rob and his family to discuss how we can spend the money most effectively to support the MND community. “While there are no effective treatments and no cure for MND at the moment, we don’t believe it’s incurable – just that it’s underfunded. The money raised by Kevin’s challenge is the kind of boost that can really make a difference. “We’re already working with researchers who are pioneering new ways of staging clinical trials. These give people with MND the opportunity to take part in clinical research and trials – that’s an area we’re keen to expand on and one which we’ll be talking to Kevin and Rob about.” In a series of tweets, Rob paid tribute to Kevin and their lasting friendship. He said: “That’s my captain. Always guiding us forward. Always looking out for us. Everybody needs a friend like Kev.” In December, Rob also learned that he had received an MBE in the New Year’s Honours in recognition of services to Rugby League and the MND Community. For more information about Kevin’s challenge or to donate, visit www.justgiving.com/crowdfunding/sinfield-7-in-7

a friend like Kev’

Rob is pictured with his namesake Burrow Seven and a cheque for £50,000 which has been donated to the MND Association

RIENDSHIP is also at the heart of another exciting fundraising initiative which has been made possible thanks to the efforts of Rob’s close friend Barrie McDermott. Fundraisers are being given the chance to jointly own a thoroughbred racehorse called Burrow Seven which has been named in honour of Rob and his famous number seven shirt. As part of the Burrow Seven Racing Club, members get the chance to experience all the drama and excitement, as well as helping to raise money for the MND Association through the Rob Burrow Fightback Fund. A staggering £50,000 has already been raised. Barrie explained: “It’s hard to come up with ideas for fundraising events in the era of COVID but we think we’ve hit upon something original, inclusive and exciting with Burrow Seven. Rob was a thoroughbred on the pitch. No one could match his speed. He was consistently a front runner for the match winning try and always a banker for man of the match!” Rob met the racehorse for the first time on 2 November at Burrow Seven’s training yard in Leyburn, North Yorkshire. He was joined by his parents Irene and Geoff. Rob said: “I’m a bit overwhelmed. I’ve been excited about this fundraising campaign for some time but meeting this magnificent racehorse was something else. I’m really honoured to have him named after me and I can’t wait to see him in his first race. Thank you to everyone who supports the MND Association by taking part. Research is the key to cure this disease. Together we can do it.” The original idea for the Burrow Seven fundraising campaign came from Racing4Business founder Phil Hawthorne. He said: “The idea was borne out of my love for rugby league and passion for horseracing. I have been really inspired by Rob’s battle with MND and I wanted to devise a Covid-friendly way to honour Rob’s legacy on the pitch and his heroism in his battle with MND.” Burrow Seven is expected to take part in his first professional race early this year and will hopefully take part in Cheltenham in March. Members of the Burrow Seven Racing Club will get to follow

all of the excitement of his racing career until membership ends on 31 October, 2021. Throughout the year they will be given the opportunity to enter a prize draw to win tickets to watch Burrow Seven on race days from the owners’ enclosure or visit him at his training yard. All prize money from Burrow Seven’s race wins will go to the charity. For more information about how to get involved visit www.burrowseven.com

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Get involved with Building on campaigning the success of today!

F you’re new to campaigning and not sure where to start, here are five easy ways you can support the Association’s work today and throughout 2021.

Act to Adapt

Join us on social media. Follow @mndcampaigns and like our Facebook page for the latest updates and details of how to get involved.

You can sign up to our Campaign Network at www.mndassociation.org/campaignnetwork. You will receive regular emails from the team sharing news about our latest national campaigns.

Reach out to the Campaigns Contact volunteer in your area. Our Campaigns Contacts are at the frontline of our local campaigning activity. Get in touch with your local branch or group to find out who your closest contact is and learn more about campaigning where you live.

Take action on our latest campaigns. You can help make a real difference to people living with MND by taking a simple campaign action from the comfort of your own home. Visit www.mndassociation.org/campaigning for more information.

Attend an online training session on campaigning. We run regular events on a range of topics. If you want to campaign with us but are unsure if you have the experience to do so, then come along to a training session. Contact Joe Dunne on 0203 875 8904 or email campaigns@ mndassociation.org.

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UPPORT continues to grow for the Association’s Act to Adapt campaign with more than 50 councillors from across England and Wales already pledging to get involved. The campaign was launched in September to ensure people living with MND can continue living safely and independently in their own homes by improving access to housing adaptations and accessible housing. Since then, more than 2,000 Association volunteers have got involved in the campaign and more than 3,500 emails have been sent to local councillors. Of the 50 councillors who have pledged their support, half have agreed to take further action. Among them is Robert Nemeth, a councillor for Brighton and Hove City Council, who has asked to meet one of his constituents to find out how he can help after receiving an email. Word has also been spreading on social media, in particular on Twitter and Facebook where volunteers, celebrity supporters and MPs have been raising awareness. A number of external organisations have become involved, including Foundations, the national body for home improvement agencies, which invited the Association to take part in a meeting with home improvement managers. Other organisations such as the Local Government Association Labour Group, which has a membership of more than 7,000 Labour MPs, councillors and supporters has also featured the campaign. The next step will be the launch of pilot projects in Bridgend, West Dorset and The Wirral, which will look at how the second phase of our campaign will work and how we can support staff and volunteers to improve services in those areas. If you would like to get involved, please email your councillor and tell them about Act to Adapt. You can also share a message on social media using #ActToAdapt. Read more online at www.mndassociation.org/ acttoadapt

Why we’re all

#UnitedToEndMND

David Setters and Lee Millard, pictured in 2016

CASH injection of £50 million over the next five years is needed from the Government to ensure researchers can keep up the momentum when it comes to finding new treatments for MND. That’s the view of a group of organisations including the MND Association, MND Scotland and the My Name’5 Doddie Foundation which are working alongside people living with MND and leading scientists to launch a campaign called #UnitedToEndMND. The aim of the campaign is to urge the Government to significantly increase the amount of funding it invests in MND research to enable us to work together to form a virtual institute. Together with funding from the three MND charities and their supporters, the institute will be able to develop new, rigorous projects which

“The success of the Ice Bucket Challenge in 2014 accelerated MND research by about five years. With proper investment from the Government we could achieve even more.”

will put us with within reach of effective new treatments. In conjunction with the Association’s Director of Research Development, Dr Brian Dickie and leading MND researcher, Professor Ammar Al-Chalabi, a series of prospective projects were reviewed and the institute concept was born. David said: “A lot of the building blocks for the institute are already in place – we have fantastic projects such as the MND

We are #UnitedToEndMND

Register, MND Smart and many other trials which are making great progress. “There is real momentum and a growing confidence among many researchers that we could be getting close to discovering effective treatments for MND. “The success of the Ice Bucket Challenge in 2014 accelerated MND research by about five years. With proper investment from the Government we could achieve even more. It is a fantastic opportunity and could change everything.” The #UnitedToEndMND campaign launched at the end of last year and there are many ways you can get involved. Visit the campaign website at www. mndassociation.org/unitedtoendmnd and help us spread the word on social media. www.mndassociation.org

The difference we made in 2020

In this special feature, Thumb Print takes a look back at the Association’s year in numbers and how, together, we have continued to make a difference.

13.5 m 3,209 1,500 1,800 145 10,000 160 57,779 3,300 £36,000 7,409 1m 3,572 20 m 1.5 m 10

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is the value of the Association’s research portfolio people received a phone call from our volunteers in the early weeks of the pandemic people affected by MND have asked for regular contact from the Association people registered for the virtual Symposium from over 48 countries people attended our virtual AGM in October members inspire our work and are at the heart of everything we do MND Emergency Support Grants worth over £38,000 were distributed pieces of information were downloaded and sent out during 2020 people living with MND and their families were supported by our volunteers worth of grants were awarded to 159 children and young people affected by MND unique page views were recorded on MND Buddies, our online hub for young children worth of support grants were distributed to people living with MND emails were sent by supporters as part of our Act to Adapt campaign people read articles online about the Association’s #HandOf campaign in June claimed by people living with MND through the Association’s Welfare Benefits Advice Service

‘A strong foundation in turbulent times’

OR more than 40 years now our volunteers have provided the strong, reliable foundation on which the work of the Association is built. Every day, right across the three nations, volunteers give countless hours of their time freely, providing emotional and practical support to people living with MND and their families, supporting branches and groups, fundraising, campaigning – the list really is endless. During 2020, the role they played in the Association’s work became even more valuable. At the start of the pandemic, our volunteers made phone calls to more than 1,000 people living with MND to offer them reassurance and to guide them towards clear, concise information. Those volunteers who help to run branches and groups very swiftly moved meetings and regular catch-ups online, helping to provide an important and muchvalued connection in the most difficult of circumstances. Others have helped to fundraise online and at home, supporting the Association through one of the most difficult and turbulent periods of its history. In many ways 2020 was a quite remarkable year which, I am sure, will have a lasting and very positive effect on the way the Association supports people living with MND long into the future. I would like to thank you all for continuing to support our Association and pass on my very best wishes for the coming year. Richard Coleman, Chair of the Board of Trustees

Eddie appears in M&S Christmas fundraising advert

MND Association patron Eddie Redmayne (taken at the Credit Suisse Carol Concert at the Wren Chapel at The Royal Hospital Chelsea, in support of MND Association, in December 2017)

T wasn’t just any advert – it was an M&S Christmas advert, featuring the voice of MND Association patron Eddie Redmayne OBE. Broadcast for the first time on Saturday, 19 December, the advert featured Eddie’s voiceover alongside a tantalising selection of M&S desserts. At Eddie’s request, the MND Association was also chosen to receive a donation from M&S as part of its ongoing commitment to good causes. Eddie said: “I am so pleased to be part of this years’ M&S Food Christmas Campaign. Having the chance to

support these charities with a donation and highlight the very important causes they support too.” The Association’s Chief Executive Sally Light said: “We’ve supported thousands of people affected by motor neurone disease through a difficult year. Thanks to donations like this we’re here to help those who need us during the festive season and beyond.” Eddie’s advert was just one of a series created by the High Street giant to celebrate the festive season. Other actors who took part included Olivia Colman, Jeremy Irons and Julie Walters. www.mndassociation.org

‘Being a trustee is an Our trustees are a group of volunteers who play a vital role in the running of the MND Association, using their skills and personal experience to drive our work forward. In a series of regular features, our trustees will explain more about the work they do and why you could be just the person we need to join our Board.

Siobhán Rooney “My personal experience of MND includes caring for my late husband Martin who had Bulbar MND. “After Martin died in October 2009 I joined the Northern Ireland Branch, and now am an Association visitor, Vice Chair and Branch Contact. I also represent the Association as a member of the Northern Ireland Neurological Charities Alliance (niNCA) a strategic alliance of neurological charities that represent individuals living with a neurological condition. “Over the years, I have worked as a nurse, midwife and health visitor in acute, community and primary care settings. I have also worked in senior management positions in Health and Social Care Trusts and the Department of Health in

Northern Ireland including a period as Interim Director of Nursing, Governance and Patient Safety. I have held several board appointments and recently completed nine years as a Non-Executive Director on the Southern HSC Trust Board in Northern Ireland where I chaired the Board Performance, Endowments and Gifts and Trust Organ Donation Committees. “I was elected to the Association’s Board in 2017 and I am delighted to be part of a very committed team of individuals. I sit on the Governance Committee and have chaired the Care Committee for the last two years and am currently one of the Board’s Honorary Officers. I am passionate about the need to find a cure for MND and want to use my experience, knowledge and skills to help improve care and services to enable people living with MND to maintain their quality of life. “I would urge anyone considering becoming a trustee to get in touch for a chat.”

Katy Styles “My background is in teaching. I now care full-time for my husband, Mark, who has Kennedy’s disease and I am also a committed campaigner. “I learnt about campaigning through my work with the Association and I now run my own award-winning campaign calling for better recognition of all unpaid carers in the UK. Running my own campaign has given me skills in communication, digital, influencing and political campaigning. I now bring these skills to the Board alongside my personal experience of caring for someone affected by Kennedy’s disease.

“I sit on the Care Committee and Finance and Audit Committee. I am the link between the Care Committee and Support Grant Review Group and a member of the Clinical Advisory Board. As a trustee, we have equal responsibility for the running of the Association. “I hope I bring the reality of day-to-day living with MND/ Kennedy’s Disease to the Board. Having gone through the benefits process, having adapted our home and used NHS services, I’m very aware of the issues people face. “It’s an amazing privilege to be a trustee, voted onto the Board by Association members. Technology has made it easier for people like me and others who are affected by MND, to attend meetings. “If you are interested in steering the Association through some challenging, but exciting years to come, I say go for it. Talk to one of us so you know what’s involved.”

We need members from all backgrounds, with a wide variety of skills and experience, to put themselves forward for the trustee election which is taking place in June. As a trustee you will be working right at the heart of the Association, using your knowledge to help us develop our work and our plans for the future. These are exciting times for our Association, and we would love for you to be part of it. For more information about what to do next see the advert on these pages or visit www.mndassociation.org/trustees2021

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amazing privilege’ Alan Graham MBE “My late mother was diagnosed with MND in 1992. My wife, Jenny, who is an AV, and I, cared for her until she died three years later. For the past 28 years, supported by the Association and the North West London Branch, of which I was a joint founder, and am still a committee member and treasurer, I have been engaged with people living with and affected by MND. I was first invited to become a Trustee in the late 1990s. “I was privileged to hold the position of Chair of the Board of Trustees for six years, and for ten years was also the Association’s appointed Director on the Board of the International Alliance of ALS/MND Associations. I am currently

a member of the Governance Committee. “My background is in financial services, working in the UK, North America and South-East Asia with Rothschilds Bank for 40 years. I retired as a board director in 2004, and now hold a variety of non-executive and trustee roles in the public, private and voluntary sectors. Among these, I am on the Board, and chair the Audit Committee, of the Parliamentary & Health Service Ombudsman; and am a trustee, and chair the Finance Committee, of Peace Hospice Care in Watford. “I hope to continue to utilise my experience in audit policy and practice, accounting and financial regulation, corporate governance, risk and assurance management and strategic planning. I remain passionate about the organisation, its mission, objectives, governance and care and research agendas. I look forward to contributing further, in any way I can, to the achievement of the Association’s vision of a world free from MND.”

Devia Gurjar “I had been following the work of the Association professionally for many years, but the loss of a friend’s parent to MND bought me personally closer to the Association too. A colleague then shared that the Board were looking for a co-opted trustee with specialist background in marketing and communications which is where my trustee journey started. “I started my career managing internal communications and engagement in a FTSE 100 retailer and have since led communications, marketing and brand teams at Girlguiding, Scope and RNIB. I am currently Director of Brand, Marketing and Fundraising at the national children’s charity, Barnardo’s.

I have built a strong understanding of the sector and its contributions to supporting those who need it most. “I sit on the Association’s Engagement Committee and use my knowledge and experience of brand and marketing across large national charities to support the organisation as it strengthens its communications and engagement activity. Having chaired cross-organisational digital transformation boards and programmes of work, I’m also a keen enthusiast for the mainstreaming of technology which can support disabled people to enjoy inclusion and access across all areas of their lives. Having spent most of my career working in disability, girlonly and youth charities, and being of Indian heritage myself, I am also a passionate advocate for the organisation’s work towards becoming more inclusive and diverse. “If you are interested in becoming a trustee my advice is to go for it! It’s incredibly rewarding, and you will be supported by a fantastic team around you.”

If you’re passionate about improving the lives of those affected by motor neurone disease, you could help guide the Association’s future From 22 January to 16 April, we’re inviting members to nominate candidates for election to the MND Association’s Board of Trustees. Elections will take place in June and successful candidates will be appointed at the AGM which will be held in July.

Nomin

ations open 22 Jan uary – 16 A pril

If you would like to find out more about this important and rewarding voluntary position, you can join our online trustee information event in March. To take part, please email our governance officer at governance@ mndassociation.org

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Campaigners fly the flag for people living with MND

UR campaigners have been flying the flag for people living with MND this year, engaging with local councillors and MPs to mobilise support on the issues that matter most. In September, the Association launched the first part of its Act to Adapt campaign, pushing for accessible homes and a faster system for delivering housing adaptations for people living with MND. “None of this could have been achieved were it not for our network of dedicated, tireless and talented supporters. Thank you to everyone who took the time to tweet a Government minister, sign a petition or email their MP.” As ever, our campaigners were quick to get behind this important issue, sending 1,222 emails to local councillors within days. Of those councillors, 73 have already pledged to support us. The pandemic also brought the worrying state of social care and the lack of support for carers into sharp focus.

In March, the Association called upon the Government to relieve the immediate pressures being faced by carers with an increase to Carer’s Allowance, improved access to testing, improved access to personal protective equipment (PPE) and the provision of clear guidance that helps protect unpaid carers. We campaigned to get people living with MND added to the Government’s list of ‘clinically extremely vulnerable’ people and we worked with the Department for Environment, Food and Rural Affairs and the Department of Health and Social Care to secure access to supermarket delivery slots for those who were not considered

‘extremely vulnerable’. We also hosted virtual All-Party Parliamentary Group (APPG) meetings to discuss the threat that coronavirus poses to people living with MND. The Association has also been working closely with our charity partners and continues to make important progress. We supported the Disability Benefits Consortium’s call to extend the £20 increase in Universal Credit benefit to all out-of-work benefits for disabled people; we signed an open letter penned by Scope calling on the Government to protect disabled people’s rights during coronavirus; and we signed Oxfam’s open letter urging the government to protect unpaid carers from encroaching poverty. The Association’s Head of Policy and Campaigns, Susie Rabin said: “None of this could have been achieved were it not for our network of dedicated, tireless and talented supporters. Thank you to everyone who took the time to tweet a Government minister, sign a petition or email their MP. We are so grateful for all your support.”

Learning more about the effects of MND

EOPLE living with MND and health and social care professionals were among the 645 people who took part in The Annual Stephen Hawking Foundation MND Lecture in November. Now in its fourth year, this important event, which this year due to COVID was held online, is organised by the MND Association and the Royal College of Nursing (RCN) and sponsored by The Stephen Hawking Foundation. The speaker, Dr Rónan Astin from University College London Hospitals, explored the National Institute for Health and Care Excellence (NICE) recommendations for respiratory care in MND, considered how they can be

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applied and demonstrated examples of good practice. Those who joined the lecture said they were ‘impressed and inspired’ by the event, with most indicating it had exceeded their expectations. Among those who attended, one said: “It has given me a greater understanding of respiratory challenges in those living with MND and the treatments that can

be effective,” while another said: “I shall share the lecture with my colleagues, it was very informative and helpful with some good references which will help my practice.” Lucy Hawking, Chair of The Stephen Hawking Foundation said: “The Stephen Hawking Foundation was very proud to sponsor this namesake lecture, brilliantly given by Dr Rónan Astin. We hope it will support professionals to provide excellent care for patients with MND and be a useful source of information for professional and family carers.” The lecture is now available to watch via our website at www.mndassociation. org/hawkinglecture

Celebrity photographer turns his focus onto MND

E’s photographed Prince Charles, captured images of celebrated comics such as David Baddiel and Stephen K Amos and now celebrity photographer Richard Cannon could be about to meet you. To mark the start of the new year, Richard, whose work has graced the front pages of countless national newspapers and magazines is aiming to photograph around 20 people living with MND and their carers as part of a new project for the MND Association and the My Name’5 Doddie Foundation. Once complete, the pictures will be used to help raise awareness of MND, both online and in print and as part of an exhibition. Richard explained: “I am very aware of the pain caused by MND and I will approach each portrait with the utmost sensitivity. It will be a very emotional project but one that I would like to tackle to help raise awareness of MND.” In February 2020, Richard photographed Simon Brennan who was diagnosed with MND in 2018. Simon is the inspiration behind this photography project. Richard will photograph 20 people from all walks of life and representing different parts of the UK, each at various stages of the disease. If coronavirus allows, photography sessions will start from early Spring in the chosen participants’ homes, with the project completed for June’s MND

Richard Cannon

Awareness Month. To be considered for this special project, please email vipevents@ mndassociation.org to express your willingness to help if selected, detailing your name, age, location and a short

summary of your MND diagnosis along with the name of your primary carer and relationship to them. You can read more about Richard’s work on his website at www.cannonpictures.com.

Speech and language therapists would like to hear your views

EOPLE living with MND are being urged to take part in an online survey to determine whether access to speech and language therapy has been affected by coronavirus. The Royal College of Speech and Language Therapists (RCSLT) has said it is concerned that lockdown may have affected access to support and would like the Association’s members to share

their experiences. The survey will cover three main questions: • How did lockdown affect your speech and language therapy? • What impact did this have on you? • What are your thoughts about the future? By filling out the survey, members can

share their views and help influence the availability of speech and language therapy services in the future. The survey is open until 5pm on Friday 5 February 2021 and can be accessed at www.bit.ly/RCSLTSurvey You can also find the survey on Facebook: www.facebook. com/596796643706323/ posts/3784627378256551/ www.mndassociation.org

Clemmie and Maisie make their Hello everyone,

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Max the Monkey

Meet my other buddies

Christmas dreams come true! H ERE’S Jackson, Macy and Maya Burrow getting creative while designing special Christmas cards for the MND Association. Inspired by their dad, Rob, who is living with MND, Jackson, Macy and Maya decided to create a set of cards to be sold in the Association’s online shop over Christmas. Macy said: “It was great fun making the cards for the MND Association. I wanted my card to be colourful and bright, as Christmas is a time of happiness and joy.” Maya also thought hard about her design. She said: “I did a Santa on my card. I like Santa because he brings us lots of presents.” “It was great fun making the cards for the MND Association. I wanted my card to be colourful and bright, as Christmas is a time of happiness and joy.”

Their mum, Lindsey said: “The kids loved getting creative – and making a mess! As a family living with MND we know first-hand how vital it is to raise awareness of this devastating disease. I think the cards are a brilliant idea and it was great to get the kids involved.”

1 Grange Valley Road, Batley, West Yorkshire WF17 6GH

This card has been designed by Macy Burrow Aged 8

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Sold in aid of the Motor Neurone Disease Association Registered Charity Number 294354 With special thanks to the Burrow Family and the Leeds Rhinos Foundation.

With special thanks to the Burrow Family and the Leeds Rhinos Foundation. Sold in aid of the Motor Neurone Disease Association Registered Charity Number 294354 Sold in aid of the Motor Neurone Disease Association Registered Charity Number 294354 With special thanks to the Burrow Family and the Leeds Rhinos Foundation.

This card has been designed by Jackson Burrow Aged 1

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This card has been designed by Maya Burrow Aged 5

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Caring for children Making sure children and young people have the care and support they need to cope with MND will always be one of the Association’s biggest priorities. Here, we explain more about how the Association has been working closely with its partners to develop two important new projects.

HILDREN and young people who are affected by MND can now access professional counselling much more quickly thanks to a new partnership between the MND Association and the UK’s leading children’s charity, Barnardo’s. Research conducted by the Association found that on average, children affected by MND were having to wait up to 18 months to access vital counselling services. By working together with Barnardo’s, the new service will slash that waiting time to just five days. The launch of the service has been made possible thanks to funding from the James Milner Foundation – the charitable foundation set up by Liverpool and England footballer, James Milner – as part of its commitment to support children and young people affected by MND. Laura Willix, the Association’s Children and Young Persons Service Development Manager, said: “Parents with MND have always told that us one of their biggest worries is the impact of their diagnosis on their family. The disease can progress rapidly and children and young people in need of help cannot wait months, and in some cases years, for vital support. Our new service will give children access to counselling sessions as soon as they

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need it. They can talk openly about their worries and fears to a counsellor with specialist MND knowledge who will help them deal with the difficult times ahead, and hopefully go some way to alleviating the worries of the loved one facing the disease.” The tailored counselling is available for children, young people and their families. It is based on the Barnardo’s 2020 Family Support Service which has supported hundreds of families dealing with the challenges of the coronavirus pandemic. Young people can access the service at any time – from the diagnosis of a loved one to post-bereavement. The sessions are held online or over the phone. Barnardo’s therapists will also support and empower parents, giving them the tools, knowledge and access to resources to help younger children

who may find it difficult to engage with virtual sessions. Sarah Wilkinson, Operations Manager at the Barnardo’s LINK Therapeutic Support Service, said: “We are absolutely delighted to be working with the MND Association; having the opportunity to support children and young people to manage the challenges and anxieties they may be facing. Both Barnardo’s and the MND Association clearly share core values around strengthening family relationships and promoting safer childhoods. By working in partnership, I believe we can make a real difference to the families we work with.” James Milner said: “Both myself, and the James Milner Foundation have seen first-hand the devastating affect MND has, not just on the person who is unfortunately having to live and fight the disease, but the person’s family and children. The James Milner Foundation’s collaboration with Barnardo’s and the MND Association can hopefully support a lot of children and young people and reduce the time it takes for counselling support at a time when they need it the most.” If you believe your family could benefit from the service, please contact your Association visitor or Area Support Co-ordinator. You can also contact Laura Willix at CYP@mndassociation.org

affected by MND H

ELPING children and young people affected by MND to create, capture and store memories of their loved ones is the aim of a new project. Together with the Nick Smith Foundation, the MND Association is giving children aged between four and ten the chance to develop Treasure Boxes, and children aged ten and over to create Memory Boxes. The boxes are filled with a range of activities designed to help children and young people make memories and create a life-long resource to treasure. At present, the project is being trialled in Milton Keynes, Manchester, Calderdale and Huddersfield. Laura Willix said: “The trauma felt by children, young people and the wider family after an MND diagnosis can be devastating. Our Treasure and Memory Boxes are interactive, tactile and aim to support children and young people gather special memories, or bits of treasured information to help them cope emotionally with some of the challenges they may face.

able to cope, and allow for discussion between the family members about what lies ahead.” The trial is part of a joint project, funded by the Nick Smith Foundation. The charity was formed in 2018 after the death of father-of-two Nick Smith from Calderdale, West Yorkshire. The 38-year old died from MND just 101 days after being diagnosed. “Our work with children and young people has informed the development of the boxes. They told us how hearing family anecdotes or sharing stories can help them connect to their family member with MND while they are still alive. And, after death, something as simple as seeing their loved one’s handwriting can help retain that connection. “For the person with MND, the boxes support them to talk with their children about their life story and guide them through some simple steps to sharing. “Our aim is that the boxes will help children and young people feel more

“Our Treasure and Memory Boxes are interactive, tactile and aim to support children and young people gather special memories, or bits of treasured information to help them cope emotionally with some of the challenges they may face.”

Nick’s brother-in-law Stephen Naylor is Chair of the Nick Smith Foundation. He said: “When Nick was diagnosed, knowing what to do to ensure his young children, Hadyn and Georgia, remembered him was difficult. That is why this project is so important to us. We want other families to have access to something that we wish Nick and the family could have shared and created together before he died.

“We are proud to be working with the MND Association on this important project and have worked closely with their team to share our experiences, test the items which have been added to the boxes and make sure they can be used to help families when they are trying to cope with the worst possible news.” Feedback and evaluation from this pilot will influence further development of the Treasure and Memory Boxes with the aim of the scheme being made available more widely in the future. www.mndassociation.org

‘Dad was with me every step of th

HEN Nathalie Dawson decided to start riding her bike during lockdown, she never imagined for a moment that it would change her life forever. What started as a challenge to ride 420 miles during June to mark her 42nd birthday and raise money for the MND Association, very quickly became so much more and led to her cycling more than 1,100 miles in 30 days, raising more than £5,600. Nathalie was inspired to raise money for the Association by her beloved dad, Bob, who had been diagnosed with MND in 2018 aged 66. Thanks to social media, Bob, who was isolating at home, became a constant companion as the miles passed by. Nathalie explained: “I’ve never been a cyclist, but like many people during lockdown I was inspired to get on my ‘mum’ bike and start riding. “Dad had been diagnosed with MND in 2018 and I was determined to help raise money for and awareness of the Association in recognition of the help and support Dad and our family had received.

left to right: Melissa, Bob and Nathalie

Nathalie and her family

“I came up with the idea of using my age – 42 – and adding a zero to make a target of 420 miles. I cycled on the school run, during the day and during the evening, clocking up around 30 miles each day.” In just four days, Nathalie had raised almost £700 and by Day 14 she had

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smashed her 420-mile target. She said: “I was absolutely determined to keep going. The support I had from family and friends was just incredible, so I decided to take my dad’s age – 68 – stick on a zero and increase my target to 680 miles.” By this time, Nathalie had become a familiar face around Cheltenham, dressed head to toe in the Association’s orange and blue colours, even down to her nails and bright orange lipstick!

Family and friends were constantly by her side and a playlist of her dad’s favourite songs provided the perfect soundtrack. Nathalie said: “The bike was covered in bunting and balloons, and I was dressed in an Association vest which was bright orange and blue. I felt so proud and stood tall whenever I went out – it was certainly a conversation starter! Everyone I met was amazing and so supportive of what I was doing.”

he way – and he always will be’ Nathalie and her bike were soon back on the road again to make a visit to the person who had inspired it all – her dad, Bob. She said: “Even though he had been with me throughout on social media and video chat I had only seen him in person once since January, so Melissa and I decided to visit him and take the bike with us. It was a really special moment and so wonderful for him to have his girls with him once more. The photo we had taken with him is so precious.”

Melissa and Nathalie’s birthday bike ride

To celebrate her birthday on 15 June, Nathalie was joined by her sister Melissa on a special 42-mile ride, which turned into 49 miles. She said: “I hadn’t seen Melissa since January because of lockdown so this one was very special. We listened to Dad’s music constantly and it definitely spurred us on.” By Day 19, Nathalie had cycled a total of 695 miles and so a new target was set – 1,000 miles. Just eight days later, Nathalie smashed

this target too and she decided to set herself one last challenge. Nathalie explained: “I decided to round it up to 1,110 miles – my age, plus Dad’s age which made 110 with a zero on the end! I ended the challenge with a massive 68-mile ride – a mile for every year of Dad’s life. I crossed the finish line at 2.20pm and felt so many emotions. I really felt as though I was floating on air and I was so grateful for all the support I received.”

Sadly, just days later, on 26 July, Bob died with Nathalie and Melissa, and his wife Christine, by his side. Nathalie said: “He showed such incredible strength and courage in the face of MND. He had the twinkliest blue eyes and the biggest smile and I am so grateful he was able to see us together one last time. “I’m still cycling on my bike and I am getting a new one which will be called Bobster, Dad’s nickname. Whenever I go out, I look up at the sky and feel close to him. Being able to share this experience with him was incredible and something that I will remember and cherish forever.” A Tribute Fund in Bob’s memory has raised almost £16,000 for the Association. To donate, visit https://bob-cooper. muchloved.com/ For more information about Tribute Funds, visit www.mndassociation.org/ tributefunds www.mndassociation.org

Struggling to cope?

We’re here for you W

HEN facing the challenges of MND or Kennedy’s disease, your emotional responses may be very different to others’. Your reactions will depend on your personal circumstances, beliefs and approach, but mixed emotions are to be expected. The coronavirus pandemic has created further pressures, including concerns about infection, shielding measures and increased isolation. Even with rapid progress on vaccines, you may still be concerned. Mixed emotions can be confusing. It’s possible to feel upset, angry and guilty all at the same time, but this is common. Identifying and understanding emotions as they happen can often make it easier to manage them. So how can you do this, and how can the MND Association help you? We provide a range of information and guidance – including our new guide, Emotional and psychological support - on our website at www. mndassociation.org/emotions. Our MND Connect helpline team can listen if you just need a chat, or you can write to them via email. The team can also help you access our information and services, as well as external services. Contact MND Connect on 0808 802 6262 or email mndconnect@mndassociation.org Our services include local support through our branches, groups and in most areas, Association visitors. Our online forum at https://forum.mndassociation.org provides a safe place to share support with others. If you need support specifically relating to the pandemic visit our information hub at www.mndassociation.org/coronavirus.

It includes important advice on how to keep positive while staying at home and how to connect safely online. No matter how you feel, emotions tend to come and go. Give yourself permission to laugh or cry when needed. There may come a time when you want to seek qualified help – ask your GP for guidance if darker feelings persist. Much can be done once a problem is shared. Therapies may be recommended to you, some of which you can easily practise at home. These can help you become more aware of your thoughts, feelings, and body sensations so you understand them. This insight may help if you feel overwhelmed. You may also find art or music therapy lift your mood. Many people find complementary therapies, such as massage or reflexology, ease anxiety. You might be referred to counselling. As someone with MND told us, ‘Counselling and a listening ear help with the trauma… this is paramount for families from onset.’ If there is a waiting list, it might be possible to seek a form of counselling through a day hospice or specialist palliative care service. Try not to be wary of hospice or palliative care, as this can be extremely beneficial, bringing a range of practical, emotional or spiritual help when needed. There is also a range of medication that might help, but this is not necessarily the first thing to try. Discussing your emotional worries with your GP is a good starting point. Whether living with the disease, a family member or a carer, you are not alone.

Counselling service is launched for children and young people: Pages 18 and 19 Research trial aims to find new ways to cope with MND: Page 26 22

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HEN it comes to understanding the possible causes of MND, having as much accurate information as possible is key. Using the current statistics, we can estimate that up to 5,000 people are living with MND across England, Wales and Northern Ireland at any one time, giving each of us a lifetime risk of developing MND of 1 in 300. But without a central source of information, it can be difficult to access the latest statistics or recognise if there any geographical hotspots. This is where the MND Register – a joint project between researchers at

Oxford University and King’s College London – comes in. By recruiting people living with MND from across England, Wales and Northern Ireland and learning more about their experiences, the Register will help researchers learn more about the disease and how it behaves and progresses. It can help the MND Association plan more efficiently for the future by ensuring, for instance, that care services are set up in the right places. It can also help in the global fight against MND – giving researchers more information to help them develop new treatments and ultimately a cure.

There are a number of clinics and care centres collecting data about people with MND for the MND Register. The data are collected as part of routine clinic visits, so you can also talk to the team at your MND clinic. More than 2,000 people living with MND have joined the register already and we would like to thank all of them for their support. For more information visit www.mndassociation.org/ mndregister We are grateful to the Betty Messenger Charitable Trust and a family trust which wishes to remain anonymous for helping us to fund this project.

Family comes together to honour their beloved mum and grandma

Carol, who died from MND on Christmas Day

WO generations of one family came together for a special 5km walk to raise money in honour of their beloved mum and grandma. Lauren Halliwell was joined by her husband, Matt and their baby son Oliver, her brother, Lee, sister-in-law Rowena, their children Alice and Oscar and nephews Logan and Ethan for the walk, which was inspired by her mum, Carol. Carol was diagnosed with MND in January 2019 and died in hospital on Christmas Day just days after spending time with her family. The walk took place just weeks before she died. Lauren explained: “Mum had seen all of us in the run up to Christmas and we all feel that she was ready to go knowing she had said her goodbyes. “We started at Mum’s house in Silverdale, Lancashire and walked about 5km up a series of steep hills to a monument called the Pepper Pot. “From the top of the hill you can see Mum’s house. She waited on her drive in her wheelchair to wave to us at the top. We initially had a target of £500, we soon surpassed that so set a new target of £1,000 and then raised £1,776. We are so, so proud of our little babes.” Alice who is five said: “People gave me lots of money to walk a long way. I went through a forest and up a hill to the Pepper Pot. I felt good because I wanted to help my grandma and the money will be used for special things like wheelchairs and beds. 14-year-old Ethan said: “I enjoyed the day out because I got to see Grandma and Grandad and Auntie Lauren and Uncle Matt and Uncle Lee and Auntie Rowena and my cousins and helped raise money for Grandma and people like her.” Logan who is 17 said: “I got to see my family and have fun while helping to raise money for MND. It was great to see my grandparents and all my aunties and uncles, as well as my little cousins. I had a great time.” www.mndassociation.org

It’s time to #Tak I

T’S January which can only mean one thing – it’s time to #TakeOverMND! As we start a new year, we’re encouraging all our incredible fundraisers to get involved and help us to #TakeOverMND by joining in with some of our amazing fundraising challenges. Former runner, Neil Mustoe, was diagnosed with MND in 2019. He is urging everyone to show their support for the Association this year. He said: “I was diagnosed with MND back when I was running a lot. I kept tripping over and was seeing the club physios. They kept diagnosing different injuries they thought it could be, but it wasn’t.” During lockdown, as Neil’s MND progressed and his legs became weaker, he started using a wheelchair. He said: “It’s harsh for a runner to lose their legs. That’s why MND is so cruel.

The Vitality Big Half Marathon

It takes what you don’t want it to take.” Neil started running eight years ago and went on to teach Couch 2 5k sessions at his local running club. In October, Neil completed the Virtual London Marathon alongside his partner Helen. Despite the terrible weather, he self-propelled himself the 26.2 miles in his wheelchair in 20 hours and 32 minutes. With support from his running club he raised £8,000 for the Association. Neil is determined to continue fighting, and to inspire others to get involved too. He said: “I treat MND like a race. I think, just one more mile, keep going one more mile. I have got to keep thinking, they will find a cure tomorrow. I have got a lot I want to do yet. I have got another mile I want to run.” If you’re inspired by Neil, here are just some of the ways you can get involved:

Neil Mustoe and his partner, Helen

#GameOverMND Gaming Marathon Weekend

Step Forward

Brighton Marathon

The Vitality Big Half Marathon

#GameOverMND Gaming Marathon Weekend

January and February 1 in 300 people will be diagnosed with MND in their lifetime. That’s 1 in 300 too many. Join our virtual step challenge and clock up 300,000 steps over 30 days and you can help step up the hunt for a cure.

Sunday 25 April Not just a race, but London’s ultimate community running festival. This one of a kind, 13.1-mile race finishes at the spectacular Cutty Sark, Greenwich. The organisers have planned a socially distanced event which, for many, will be the first in the 2021 running calendar. £30 registration plus £350 minimum sponsorship

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Sunday 12 September What better place to take on 26.2 miles, than around one of Britain’s most beautiful cities with its iconic seafront? £30 registration plus £450 minimum sponsorship

Join us for an epic weekend of gaming and take on a gaming marathon. Pledge as many hours as you want, at any time over the weekend. Whether you’re a Playstation pro, Xbox expert or Switch superstar, get involved and help make it #GameOverMND.

akeOverMND! Yorkshire Three Peaks

Ultra Challenge Series

London to Brighton Cycle Ride

For more information or to join these events visit www.mndassociation.org/ takeovermnd or take a look at your copy of the MND Association’s Events Diary which is included with this edition of Thumb Print.

7 August 2021 Join a team of 81 #TeamMND trekkers, to reach new heights in the fight against MND. This challenge is a must for fans of rugby legend Rob Burrow, whose wife Lindsey’s own Yorkshire Three Peaks challenge was featured on his BBC documentary.

Sunday 19 September Set yourself a cycling challenge to remember and complete the popular 55 mile route from Capital to coast. Starting in South London participants travel through the South Downs before arriving at the lively Brighton Seafront. Join #TeamMND for this unmissable event! £55 registration plus £175 minimum sponsorship

Dates and locations throughout the UK The popular walk, run or jog series is back for 2021. This year we can look forward to 14 COVID safe events at some of the UK’s most stunning locations including; the Jurassic Coast, Peak District and Cotswold Way. Choose a 25, 50 or 100km distance and take on the challenge of a lifetime this year.

Join us a nd

#TakeO verMND in

2021

hope A gift in your Will could give

of a world free from MND

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

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Trial aims to help people find better ways to cope with MND For people living with MND, mental health can be a real concern that is sometimes overlooked. Here, Dr Rebecca Gould from University College London and Professor Chris McDermott from the Sheffield Institute of Translational Neuroscience explain more about a new trial which aims to discover how people with MND can improve their mental health and psychological wellbeing.

HEN living with MND it can be easy to forget to look after your mental health or psychological wellbeing as so much of the focus is, understandably, on your physical health. But finding ways to look after your wellbeing is extremely important. Studies suggest nearly half of people with MND experience symptoms of depression, while almost a third suffer from symptoms of anxiety. Those who are more distressed are more likely to experience poorer quality of life and poorer physical health. At present, we know very little about how people with MND can improve their psychological wellbeing, but the COMMEND trial is aiming to address this gap. The trial is testing a new form of psychological therapy called Acceptance and Commitment Therapy (ACT) which helps people learn how to best live their lives alongside any difficulties they may be experiencing. ACT has proved helpful for improving the wellbeing of people with other life-limiting illnesses and disabling long-term conditions such as cancer, muscle disorders and chronic pain. ACT for people with MND is designed to: · help them clarify what’s really important and meaningful in their lives; · enable them to find ways of continuing to do the things that really matter or be the type of person they want to be with MND; · empower them to learn new ways of dealing with any uncomfortable or distressing thoughts and feelings that might come along.

With its focus on helping people to explore how best to live their lives, even when faced with significant challenges, ACT can be potentially beneficial for everyone, and not just those who are feeling distressed or having difficulty coping. The COMMEND trial is funded by the National Institute for Health Research (NIHR) Health Technology Assessment Funding Programme and the MND Association. The main aim is to see whether ACT – alongside usual multidisciplinary care - is better than multidisciplinary care alone for improving the psychological wellbeing of people with MND. Eleven MND Care Centres and Clinics across the UK are currently recruiting people with MND to the trial: Leicestershire, London (King’s College Hospital, Royal London,

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Some of the therapists involved in the COMMEND study

University College London Hospitals), Middlesbrough, Newcastle, Northern Lincolnshire and Goole, Plymouth, Preston, Sheffield, and South Wales. Two further sites at Glasgow and Stoke-on-Trent hope to start recruitment in the new year. Commenting on the importance of the COMMEND trial, Dr Rebecca Gould said: “Although the situation is improving, some people with MND are still not able to access psychological therapy within their MND services. This is because some commissioners of clinical services argue there is not enough evidence to show that psychological therapy is beneficial for people with MND. If we can show that ACT makes a difference to the psychological wellbeing of people with MND then this will provide evidence to the NHS that this type of psychological therapy should be routinely provided.” In March 2020, the COMMEND trial paused recruitment due to coronavirus. Since then, it has managed to successfully adapt in order to ensure that it minimises the risk to both participants and researchers. All study procedures and therapy sessions can now be completed from participants’ own homes via telephone or video calls. Professor Chris McDermott said: “We know that being able to take part in research is important for many people with MND – the COMMEND trial gives people an easy way to do this, without them needing to attend clinic.” If you’re living with MND and interested in finding out more about getting involved in the COMMEND trial then please email dop.commend@ucl.ac.uk or go to www.ucl.ac.uk/ psychiatry/research/mental-health-older-people/projects/ commend

Care information update Information sheet 3D – Hospice and palliative care We have recently updated this sheet and made various minor amendments. The aim of this sheet is to raise awareness about the wide range of support on offer by hospice and palliative care teams. These services can bring huge benefit from diagnosis onwards, where appropriate. Information sheet 10G – Support for families with children New animation – What is social care? This new animation provides a quick summary of our information sheet 10B – What is social care? Covering key points, this visual overview is also easy to share. See the animation at: www.mndassociation.org/animations Information sheet 2C – Primary lateral sclerosis (PLS) Following a research review and feedback from people affected by PLS, this sheet has been updated to reflect what is currently known about this form of MND.

This sheet has been revised to ensure the content about benefits, entitlements and other financial support is up to date. These entitlements can help families with dependent children and young people. New wellbeing activities for carers We have introduced various short activities on our website to help carer

wellbeing, including meditation, tai chi and gentle exercise. Find the new audio and video section towards the bottom of the carer web page at: www.mndassociation.org/carers See all of our resources at: www.mndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org Our information development is accredited through the PIF Tick scheme. This means our resources are evidenced, user tested and reviewed by experts. Would you like to help in 2021? 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 this year if you would like to get involved, including a range of different content and formats. You can pick and choose which tasks you want to work on and make a difference in the comfort of your own home. To find out more, contact: volunteering@mndassociation.org

Roll out of coronavirus jab begins

OME people living with MND could be among the first to receive the new coronavirus vaccine. Priority for the vaccine, which was first rolled out in December, is being given to older members of the community and those who are registered as clinically extremely vulnerable. The vaccine is being offered in waves and is dependent on the following factors:

• The person’s age. • Whether the person is registered as clinically extremely vulnerable. • Whether the person is living in a care home.

If you are not currently registered as clinically extremely vulnerable, but believe you should be, you should speak to your clinician or GP and ask them to register you. Adult carers, defined by the Government as those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, will receive the vaccine in wave six. Full details about criteria for the nine waves are available on our website at www.mndassociation.org/immunisation Have you received your vaccine yet? Email editor Clare Brennan at clare.brennan@mndassociation.org www.mndassociation.org

Foundations support Association’s work with generous gifts

HE past year has been challenging for many charities with income streams squeezed and many charities both large and small facing devastating drops in income. Our trust partners have always been very generous in their support of the Association’s work and in November, we were delighted to receive significant gifts from two of them – bright lights at the end of a difficult year. “We are very pleased to be supporting the MND Association’s research programme as it drives forward the search for new treatments for this devastating disease.” The Garfield Weston Foundation has donated £75,000 towards our core research programme to ensure we can continue to build momentum in MND research and accelerate the search for new treatments and a cure for MND. Hot on the heels of this gift, we received the very welcome news of a generous donation of £125,000 from the Wolfson Foundation. As the Wolfson

Foundation usually funds capital projects, this award is an extraordinary one-off grant to help charities meet the financial challenges of coronavirus. We were particularly grateful to receive this gift at this time, which comes on top of a Wolfson grant of £375,000 earlier in the year. Mark Chapman, the Association’s Director of Finance said: “Our thanks to both foundations for their extremely generous support. It is incredibly helpful to receive unrestricted grants at this time as it gives greater flexibility and allows us to put the funds where they are needed most.” Both foundations are long-standing and generous supporters of the MND Association donating more than £2 million to the Association over the last two decades. Paul Ramsbottom, Chief Executive of the Wolfson Foundation said: “We are delighted to provide this funding to the MND Association as one of 80 organisations across the UK backed by our Covid-19 Support Fund. This pandemic is a time of significant

About the Wolfson Foundation

HE Wolfson Foundation is an independent charity with a focus on research and education. Its aim is to support civil society by investing in excellent projects in science, health, heritage, humanities and the arts. The Foundation’s investments were based on Great Universal Stores shares, which in 1955 had nearly 80 companies in the Group (including clothing and furniture manufacturers, retail chains and mail order businesses). The Foundation’s assets were diversified in 1998. Some £1 billion (£2 billion in real terms) has been awarded to more than 14,000 projects throughout the UK, all on the basis of expert review. Recent examples range from projects in Porthcurno in south-west Cornwall to the Shetland Islands.

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challenge and uncertainty for charities, and we hope our flexible funding shows solidarity as well as support for such a vital organisation.” “It is incredibly helpful to receive unrestricted grants at this time as it gives greater flexibility and allows us to put the funds where they are needed most.”

Philippa Charles, Director of the Garfield Weston Foundation said: “We know the past year has been incredibly difficult for all of the charities that we work with and so we have continued to offer flexible, core funding to help our partners target the areas of highest need. We are very pleased to be supporting the MND Association’s research programme as it drives forward the search for new treatments for this devastating disease.” Our congratulations to Guy Weston, Chair of the Garfield Weston Foundation’s Board of Trustees, who received a knighthood in the New Year’s Honours for services to charity.

About the Garfield Weston Foundation

HE Garfield Weston Foundation is a family-founded, charitable grant-making foundation, which supports a wide range of causes across the UK, donating more than £80 million annually. It was established in 1958 by the Weston family and is one of the largest and most respected charitable institutions in the UK. It has donated more than £1 billion in total. The Trustees are descendants of the founder, and the Weston family continues to take a highly active and hands-on approach. • More than 40,000 separate grants have been made since 1958 • The Foundation was established so that giving could grow over time – more than £500million in the past ten years alone • The endowment remains as shares in the family business.

Championing MND at the heart of Westminster The All-Party Parliamentary Group on MND (APPG) plays a vital role in raising awareness of MND among MPs in Westminster. Here, the group’s Chair, Andrew Lewer MP, explains more about his role and the group’s plans for 2021. What does the APPG on MND do? “We are a cross-party group of MPs and Peers with an interest in MND. Our purpose is to increase awareness and understanding of MND among Parliamentarians, and to campaign for better access to high quality services for people living with MND, their families and carers.”

What made you decide to join the APPG and how long have you been involved? “I joined the APPG soon after I was elected in the 2017 General Election, following an invitation to visit the MND Association’s office in my constituency in Northampton. It was great to see the important work the Association does supporting people with MND, their families and carers. I was eager to contribute to that work and help make a meaningful difference in my capacity as an MP. I was delighted to be elected as the Chairman of the APPG in February 2020 and am looking forward to taking the group from strength to strength.”

What achievement are you most proud of as an APPG? “Ensuring everyone with MND can access welfare support quickly and with dignity is important to us. That’s why my APPG colleagues and I have used different opportunities in Parliament to bring attention to the MND Association and Marie Curie’s Scrap 6 Months campaign. The campaign seeks to improve terminally ill people’s access to benefits. I am proud that, as a result of our collaborative work, the Government has conducted a review of the welfare system, with the findings due to be published soon. Additionally, the pandemic has caused so much disruption to the way we work and communicate. Despite this, we recognise the importance of continuing our engagement with Parliamentarians and the MND community which is why we held an online meeting in June – a first for our group! I was immensely proud to chair the meeting, which was our best attended yet, with 42 Parliamentarians, nine MND volunteers as well as MND Association patrons Baroness Finlay and Eddie Redmayne OBE. We followed this up with another virtual meeting in November with another fantastic turnout to discuss the Association’s campaign, Act to Adapt, which calls for more accessible homes and a fairer and faster system for delivering housing adaptations.”

What is the APPG currently focused on? “We are currently supporting the Association’s work on

Andrew Lewer MP

housing adaptations and looking to raise awareness of the delays people with MND face. Several APPG members have already written to their local councils asking if they have fasttrack systems in place for home adaptations for people who are terminally ill. We are also working with the Association on its proposals for increased Government funding for MND research.”

As we head into 2021, what’s next for the APPG on MND? “There is still much work to be done in the areas of health, social care, welfare, housing and research. We will continue to work with colleagues across Parliament and external stakeholders to ensure these systems provide high quality services to people living with and affected by MND. Delivering the best outcomes for people with MND will always be at the heart of everything we do.”

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

Building the MND Register You can find out more by visiting www.mndregister.ac.uk alternatively you can email mndregister@kcl.ac.uk or call Oxford 01865 227 714 or KCL 0207 848 5258

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

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Association supporters are recognised in Queen’s Birthday Honours

Richard Pollins

Paul Jameson

Grenville Clarke

Susan Graham

UNDRAISER Richard Pollins, who walked 40km around London on artificial legs, has been awarded a British Empire Medal in the Queen’s Birthday 2020 Honours List in recognition of his services to the MND Association. Richard raised almost £70,000 for the Association during his four-day journey, which was inspired by his mum who is living with MND. The event took place as part of his 40th birthday celebrations. Richard, who was born without legs, said: “There were fears I’d never be able to walk. There are many reasons why, over the last 40 years I have been able to go from proving those fears unfounded to now taking on this challenge. Most of those reasons are down to my Mum. She made everything happen and the impossible possible.” Others from across the MND community have also been recognised by HM The Queen. Paul Jameson, a member of the Association’s West Surrey Branch, has received a British Empire Medal for charitable services to people living with MND. He said: “I was, of course, delighted and humbled to receive the award for my efforts in fundraising for MND research, my charity work in Africa and setting up an online platform Aura.life to help

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Anne Bulford OBE

people manage their end of life affairs. “Although I feel there are probably more deserving people than me, it is a great honour to have received the award and something I’m very proud of and will cherish for the rest of my life.” Susan Graham has received a British Empire Medal for services to people living with MND in the Asian community. Susan set up her charity Jaspal’s Voice in memory of her sister, Jaspal, who died from MND. She said: “I feel honoured that my efforts are recognised and indebted to the hard work and commitment of the Jaspal’s Voice team. “When you receive an award, it’s an affirmation that people appreciate what you do. Raising awareness is my key goal in helping the MND community in memory of my sister, Jaspal, and this award is part of her legacy.” Grenville Clarke, who is living with MND, has received both the British Empire Medal and the Suffolk Medal for services to the environment and community. The honours were presented to Grenville in recognition of his environmental work in Suffolk in support of organisations including the Green Light Trust (GLT) and Suffolk Wildlife Trust. Grenville was presented with the

Suffolk Medal in April and with the British Empire Medal on his birthday in July. Both medals were presented by Clare, Countess of Euston, the Lord Lieutenant of Suffolk. Speaking about the Suffolk Medal, Grenville said: ““I was totally surprised when I learnt that I had been granted this award. “I have to thank those who, over the past 50 years, have given me the opportunity to have such a rewarding and enjoyable time with so many lovely people. “This award is not just for me, but for all those who have preceded me and followed through with projects like the Community Woodlands with GLT and Lackford Reserve with the Suffolk Wildlife Trust.” Former MND Association trustee Anne Bulford OBE has received a CBE for services to broadcasting and charity. Anne, a former Deputy Director General at the BBC, was elected to the Board of Trustees in 2010 and became Honorary Treasurer in 2011 before leaving the Board in 2013. Anne’s mum, who was diagnosed with MND in 1992 and died in 1994, inspired her decision to become more closely involved with the Association and her desire to support other families affected by MND.

A sack full of festive fundraising fun!

ORE than 130 Santas, some elves and a reindeer took part in the Association’s first ever virtual Santa run. Held on 5 and 6 December, the event saw supporters up and down the country dressing up as their favourite Christmas characters and taking part in a 5k run. The event raised more than £10,000. Lauren Hanna was joined by her family for their Santa run, in memory of her mum Evelyn who died just 10 weeks after being diagnosed with MND. Lauren said: “What I witnessed with Mummy was soul destroying. MND took everything from her. MND is so cruel and heart-breaking.” Lots of children got involved in our other festive fundraising activities, including six-year-old Charlie Reid, who walked 24 miles in 24 days during Advent. He took part in the Winter Walk in memory of his grandfather, or ‘Geeps’ as Charlie affectionately called him, who died from MND. Charlie’s mum Rebecca said: “Dad would be incredibly proud of Charlie taking on this challenge and would have absolutely loved to be holding his hand for every mile.” Association visitors Anne Lipscomb and Maggie Cooper, from the Colchester and North East Essex Group, were just two of the fundraisers who chose to take to the sea for their festive fundraising. They completed a December Dip in the waters

off Frinton in Essex. Anne said: “There were huge smiles all round after the swim and a well-deserved round of applause. After changing rapidly into warm, dry clothes there were mince pies and mulled wine aplenty; a welcome reward!” A group of keen crafters joined RHS Chelsea gold medal winner Sue Hayward for an online Christmas wreath-making workshop. One of the participants, Hazel Hodge-Carter whos husband Alan died from MND, said: “It was a great session. I am proud of what I created but more importantly I felt part

of an MND family tonight.” Hazel also went on to take part in the cosiest of all the festive fundraising ideas; MND PJ Day. Like many others Hazel wore her festive pyjamas all day, sharing a photo on social media. She ventured out to her local garden centre, taking leaflets to share with anyone who enquired about her unusual outfit. If you missed the festive fundraising events but want to get involved and raise money in 2021, turn to pages 24 and 25 or visit www.mndassociation.org/ fundraising

Lauren Hanna and her family take part in the Association’s virtual Santa Run

Starting a conversation about communication

NEW symbol has been developed to help make life easier for people affected by MND. The Communication Access Symbol has been created by the Royal College of Speech and Language Therapists (RCSLT), in partnership with charities including the MND Association, to enable companies to learn more about accessible communication and how best to support their customers. Once they have taken part in the appropriate training, businesses and organisations across England, Wales and Northern Ireland will be able to display the Communication Access Symbol, demonstrating support for

Barry Wilson and Jan Adams, who are both living with MND and have helped the Association promote the Communication Access Symbol

customers who may be experiencing communication difficulties. Barry Wilson, who is living with MND, said: “Business transactions are difficult for people with communication

problems and I have been frustrated on many occasions when companies don’t understand or have the patience to listen. I am therefore delighted about the new Communication Access Symbol. I hope many businesses will adopt the system and give confidence to people like me with communication issues.” Several UK businesses and organisations have already taken the Communication Access training including Skipton Building Society, University of Leeds, Health Education and Improvement Wales and ISP Fostering. For more information visit www.communication-access.co.uk www.mndassociation.org

branchesandgroups

Friendship, entertainment and more to be found at virtual meetings Since the start of the pandemic, the Association’s branches and groups have worked hard to ensure people living with MND and their families continue to receive the support they need. Here, Jean Lear from the Mid Kent Branch explains how they have moved their meetings online to ensure they can keep in touch.

Members of the Mid Kent Branch meet online

“O

UR virtual groups have developed as we have gone along and, as well as providing an opportunity for members to see old friends again, we have been able to pass on information about topics as varied as easy electronic library use; GP appointments; MND collecting boxes, joining a ukulele group and our current favourite, recipes. “We used childhood photos for a junior picture gallery quiz and one of our regular members sends us an enjoyable activity to take part in each meeting. “We have had short presentations from a range of speakers, including our President, Professor David Oliver. He was followed by Bobbie Walkem-Smith, who has just taken up the post of community engagement officer at Medway Maritime Hospital and did her best to answer our questions about coronavirus and safety measures at the hospital. The information flow was two-way and I’m sure Bobbie found our members’ perspectives on living with MND at this time very informative. Elaine Coates, Mid Kent’s campaigns and influencing lead, came to another meeting and specifically asked us to pass on any ‘influential’ contacts we might have as

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well as any other ideas and suggestions. Dr Anjura Varshney spoke about being fit to drive and Dr Jemeen Sreedharan, a neurologist and neuroscientist at King’s College London, explained how researchers have used lockdown to make and maintain virtual contact with fellow researchers across the world. “The Heart of Kent Support Group started meeting virtually later than the Wisdom Hospice based group and they have been pleased to reconnect with all their friends from the ‘club’ and do the occasional quiz. We are trying to encourage new recruits to the ukelele group and recently commissioned some carol accompaniment for the December meeting! “We are working hard to encourage newly-diagnosed people with MND to take part in our meetings. We are so grateful for the technical support and enthusiasm of Ahmed Abdeldayem our new Area Support Co-ordinator who has hit the ground running since joining us at the end of last year.” You can find out more about the Mid Kent Branch by following them on Twitter @MNDMidKent or by visiting www.mndassociation.org/midkent

Enchanting story raises money in memory of Olly W HEN proud grandad Paul Joynson dreamt up a series of poems to entertain his granddaughter Amelia before bedtime, he had no idea it would turn into a

book. But four years after coming up with The Mingoes – enchanting fictional characters based on flamingos – Paul has done just that. His book is now helping to raise money for the MND Association in memory of his son, Olly, dad to Amelia and Willow, who died from MND in August 2020 aged just 41. He said: “Amelia, who is now eight, always wanted me to read The Mr Men to her, but I thought it would be nice to come up with something a bit different to keep her entertained. “At the time, Amelia was four and she couldn’t pronounce ‘flamingoes’ properly. But that got me thinking and inspired me to create a group of characters called The Mingoes.”

Paul Joynson pictured with a copy of his book, The Mingoes and their Amazing Adventures

Paul’s son Olly, who died from MND in August last year

The Mingoes and their Amazing Adventures sees the characters enjoying all kinds of fun ably assisted by their leader Number 1. Before he died Olly, a graphic designer, created the illustrations and laid out his dad’s stories in book form. Paul said: “We were hoping that the book would be published earlier this year, but because of coronavirus that had to be put on hold. Olly died in August which meant that he never saw the book completed. “MND completely changed Olly’s life, but he never complained and showed amazing strength and courage. The book is now his legacy.” The book is now available to buy from Amazon and Waterstone’s.

A festive fundraising gift!

BIG thank you to everyone who bought and sold tickets for the Christmas raffle - your efforts helped to raise a record amount of more than £140,000. Congratulations to all those who won prizes including Sally Cameron who won £5,000, Gwendolene Joy who won £1,000 and Rhiannon Meadow who won £500. A full list of winners is available at www.mndassociation.org/raffle. If you didn’t win this time don’t worry! There will another chance to win some great prizes and support people living with MND at the same time in our Summer Raffle. Full details of how to take part will be available in the Spring edition of Thumb Print.

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positive and are taking each day as it comes. She said: “We have also raised funds for the MS Society in the past as our Dad had multiple sclerosis, but now I want to get money in to help people who are living with MND, like my sister. Funds are needed to help those who are living with this awful illness and to put towards the desperate search for a cure.

Gaynor has got fundraising sewn up!

Gaynor and her sister Sue and some of the face masks Gaynor has created to help raise money for the Association

RIGHT and cheery face masks are being made and sold to help raise money for the MND Association on the Wirral. Created by Gaynor Mellow, whose sister Sue is living with MND, the hand-crafted masks have already raised more than £500 for the Association’s Wirral branch. Over the years the sisters have raised thousands of pounds for charity, with Sue alone raising £30,000 for local children’s hospice, Claire House. They have also taken part in three major hikes along the Great Wall of China, the Inca Trail and in Vietnam. Gaynor said she was devastated when her sister was diagnosed with MND but added they are determined to remain

“Sue has already had vital help from the local branch with adaptations to her home and we are so grateful for their invaluable support. “She has always given so much to the community. As well as her charitable work she was employed by the local borough council working in Fostering Services. Having recently retired she had so many adventures planned but obviously all that has now changed. But she is still very positive and her bubbly self and is exercising every day. Unfortunately, because of Covid-19 she cannot now go to Aqua Fit sessions, but hopefully will be able to get back to that soon. “Meanwhile, as I like sewing, I decided to make face masks for our family to keep us safe during the pandemic, but word got out and the venture has grown so much that I’ve now made and sold 50 of them.” You can find out more about the work of the Wirral Branch on Twitter. search for @MNDAWIRRAL

250-year-old landmark is lit up in orange and blue

T has been a feature of the Plymouth coastline for more than 250 years and in June Smeaton’s Tower was bathed in orange and blue light to mark Global MND Awareness Day. Thanks to the efforts of the Association’s Plymouth Group and Plymouth City Council the popular landmark was lit up in the colours of the MND Association to help raise awareness on 21 June. This stunning pictures were taken by Plymouth-based photographer Mike Lister.

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Lisa’s making waves with her latest challenge

ESPITE being new to open water swimming and paddle-boarding, Lisa Palmer has set herself the challenge of clocking up 1,000km in the sea over the next 12 months. The 37-year-old from Littlehampton in West Sussex is raising funds in memory of her aunt, who was supported by an Association visitor and received grants from the West Sussex South Branch for a stairlift and a riser/recliner chair while she was living with MND. Over the next year she aims to raise £1,000 by covering 1,000km on her paddleboard and by swimming. Lisa said: “The MND Association provided invaluable support to my cousin who cared for my aunt, and to my aunt herself through grants and emotional support. They also gave a carer’s grant to my cousin to enable her to have time out for herself. She bought a paddleboard and used this to cope with her caring role. The support the MND Association gave to my aunt and her family was invaluable throughout her battle with the disease.” To support Lisa’s challenge visit www.justgiving. com/fundraising/MND1000

Lisa gets ready for her challenge on her paddleboard

Join in the Conversation Our online Forum is an ideal resource for anyone living with or affected by MND. It is run by the MND Association, but most content is created by people affected by MND, who share first-hand experiences as well as medical, emotional and practical support. It is also a safe place where people who are experiencing symptoms or awaiting diagnosis can ask questions and express their concerns. Anyone can access the forum to read content, but you must register if you’d like to ask a question or comment.

https://forum.mndassociation.org

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thankyou

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

On the right trek: Ryan Williams and friends Carl, Josh, Stuart S and Stuart T, trekked the 1,345m up to the summit of Ben Nevis…wearing kilts! They took on the challenge in memory of their good friend John White, who had MND. Ryan said: “John was very keen on giving to the MND Association and we thought we would do something in honour of his name as it’s the least any of us could do for such a caring and selfless person.” Together they raised £1,620.

Lee spreads his wings: Lee Coleman took to the skies to raise money in memory of his Mam, Jeanette. In October he bravely completed his wing walk challenge, travelling at speeds of 130mph on the wings of a plane. He raised £1,240, and described his wing walk as an ‘amazing experience’.

An incredible donation: Diana was diagnosed with MND on 24 March 2020, the day after the first national lockdown. She decided to raise money to fund both MND research and her local branch in South Hertfordshire, after they provided her with a reclining chair. She said: “I wanted to do something, not just sit here, so I decided on a head shave. I had a fantastic career as a paediatric physio in a special school, working for the NHS. I feel humbled by the fact that a lot of parents and staff have donated so generously.” Despite an original target of £1,000, Diana has raised an incredible £14,885. Miles of smiles!: Friends Lottie and Grace, both aged 13, ran their first half marathon. They battled against torrential rain and high winds, but they did it! After the race they commented: “The thought of the money we were raising for the MND Association kept us going.” The girls were still smiling at the end, having raised a wonderful £1,445.

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‘For Grandma’: Ten-year-old twins Aidan and Daniel, along with Mum Lucy, set themselves a challenge to cycle 155km on their exercise bike in 12 hours. They decided on the distance as it’s the equivalent of travelling from their home in Morpeth, to their grandparents’ home in Darlington. Together they raised a brilliant £645 in honour of their Grandma who is living with MND. They even managed to clock up an extra 65km.

Making every step count: Every year Julie Sala, pictured second from left, who is an MND nurse specialist at the Lancashire and South Cumbria MND Care and Research Centre, hosts the P2B4MND. It’s a mammoth walk from Preston to Burnley to raise funds for both the centre and the wider Association. Despite restrictions due to the coronavirus pandemic, this year was no exception. The format changed and participants were invited to take part virtually, by walking 100km during the month of September. A total of 80 people took part and raised an incredible £2,500. Remembering Paul: Aimee, aged 14, cut off her hair in memory of her neighbour Paul Cromarty who had MND. Aimee’s mum Claire said: “He was such an amazing Dad, husband, friend and neighbour that we wanted to do something to help with funds to find a cure. No one should have to go through what he went through.”

Cathy is making waves: Cathy Miller completed a two-mile open water swim with her friend Julie, also pictured, joining her to swim a mile. The duo raised an incredible £2,143 in support of Cathy’s sister-in-law June who is living with MND. Cathy said: “I started open water swimming last year for fun with two friends and remembered how much I enjoyed swimming. I knew I needed to do something for MND, so as soon as the lakes reopened, which was earlier than most gyms, I was able to continue swimming and start training.”

Aiming high: Paul Blackledge and his brother-in-law David Hindle bravely climbed Helvellyn in the Lake District to raise more than £800. Paul said: “We have done a charity climb every year for 13 years and we wanted to support the MND Association this year after seeing Doddie Weir and Rob Burrow on the TV. It really moved me.”

Making a huge difference: Joy Wilson started fundraising for the MND Association after she lost her husband to MND in 2008. Since then she has used her husband’s Tribute Fund to raise an incredible £50,000. Joy never dreamt that all the little things she made to sell at stalls could add up to make such a huge difference. Joy’s latest contribution is selling facemasks – so far she’s made more than 600. For more information please email esther.fifield@ mndassociation.org

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yourletters 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 Pease note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

‘Thank you for being with us on this terrible journey’

HANK you for Thumb Print. I feel less alone when I read it, even if my Simon won’t look at it because it is about his arch enemy - MND. Simon, my husband of 26 years, was diagnosed in January 2020 at the age of 50 with Progressive Bulbar Palsy MND. This rarer and extremely life-limiting type of MND starts in the tongue and throat and, for Simon, is descending into his upper body, compromising lung function - Simon has a BiPAP ventilator. Simon’s Dad and both paternal aunts died with MND. Simon had to retire from his job as a science teacher and he now mostly uses an iPad to speak. The Association supported Simon’s voice banking in January. He recently had a feeding tube fitted, thanks to the tenacity of Chrissie Batts our wonderful MND Specialist Nurse who has instigated every aspect of Simon’s care and support team. Our Association visitor, Judy, has given us incredible support and reassurance right through lockdown

by phone and email - such a lifeline. MND Connect has been there for me several times answering my questions and giving guidance, even during the months before diagnosis as we fought to have Simon’s symptoms taken seriously. Simon has always been my rock because I have chronic depression and anxiety for which I take medication to prevent another breakdown. Our sons aged 21 and 18 have been a great help but they are both off to university very soon. Since the diagnosis, I have become totally responsible for Simon, particularly as the mental changes of MND/ potential frontotemporal dementia mean he cannot plan or handle complex decisions and Simon has found it hard to engage with the necessary changes which MND is forcing on him. This poem expresses my fears at a time when we have been writing Simon’s Advance Care Plan and I have been imagining how I would cope with taking decisions for Simon as his Attorney. But

it also points out that none of us carers are truly alone, thanks to the amazing support of the Association, health professionals and of course family and friends. So, thank you for being with us on this terrible journey. Helen Flack, via email

What I fear I fear that I won’t be there. That Covid, cancer or calamity Will take me first. I fear that I will be there, But that I won’t be strong enough To choose what needs to be done, And harder, what needs to be stopped. How to help him let go? How to let him go? Then how to be without him? Not alone. That’s how.

Remembering Steve, one year on

IFE has been very different since I lost my lovely husband Steve to MND. A year on, for his first anniversary, I decided to raise some money for the Association, with a coffee morning/art exhibition. However, with the arrival of Covid unfortunately it never happened. I had already put the wheels in motion and started painting and gaining support from friends, family and neighbours, but with the lockdown and safety rules the actual event realistically couldn’t happen. The good news is that through donations, a raffle and the selling of some of my art work and cards plus, I braved a car boot sale ‘we’ have managed to raise a fantastic £653.50. Hopefully this year the coffee morning will happen, and ‘we’ can raise it all over again.

Sonja Castle, via email

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‘Our experience of the monster that is MND’

“I

thought that most people living with MND and their families could relate to this piece that my daughter, Catherine, has just written, following her father Michael’s death from MND in August. It is so true, we all put a brave face on things and soldier on, but the monster is eating away at us all. Margaret Thomas, via email “THE day the monster arrived my world stopped turning. The spinning plates of life crashed irreparably. “At first the monster was sly, deceptive. Hopes and dreams for the future ended abruptly, but frailty was quiet to creep in. Gradual – as the monster surreptitiously gained strength. Arms that swung us as children, pulled oars, fixed things badly, no longer worked. A head that once stood proud and tall began to falter and needed support. “Unobtrusively, the monster began to take over, seeping into every part of life. Holidays, no longer carefree, but a frustrating reminder of how things had changed. Independence, freedom, control dwindling as the monster gained traction. We all adapted, silently devastated as we watched the decline of our rock. Watched as legs that could walk for miles struggled to keep upright.

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 Michael Thomas

Watched the bravery as you continued to fight a losing battle. “The monster began to loom, sucking energy and drive from you. Small setbacks combined until you had had enough. You never gave up, just wanted it to stop – not just for you but for us as well. The monster took you in the end: gained so much strength but never your spirit. It left us with a chasm that nothing can ever fill and grief that feels all-consuming and never-ending. “But it no longer has you.”

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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

It is also a safe place where people who are experiencing symptoms or awaiting diagnosis can ask questions and express their concerns. Anyone can access the forum to read content, but you must register if you’d like to ask a question or comment.

https://forum.mndassociation.org

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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