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The magazine of the Motor Neurone Disease Association

Spring 2021

Thanks to you our investment in MND research is growing Full story – pages 6 and 7 A message from our CEO – page 3

Fo or MND

GAZE COMPATIBLE

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, part of the

family

5 MND Matters on the move Introducing our new podcast, MND Matters.

6-7 £5.7 million cash boost for MND research Association’s latest announcement on the future of MND research.

10-11 Making every mile count! Catch up with our 7 in 7 fundraisers.

15 ‘I’m so grateful for all the support I have received’ Nilesh Topiwala shares his story of being diagnosed with MND during lockdown.

20-21 ‘Aim high, dream big’ Len Johnrose, who is living with MND, on his busiest year yet.

30 Northern Ireland Branch marks big milestone Focus on 40 years of supporting people living with MND.

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: ‘We’re investing more in MND Research’ - full story 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.

welcome… There has never been a more important – or exciting time - for MND research. In the past ten years alone, MND researchers have discovered more about this devastating disease than at any other point in the last century and we’re more determined than ever to capitalise on this extraordinary progress. Thanks to the incredible support we have received this year from the whole MND community, including Leeds Rhinos legend Kevin Sinfield, who raised £2.2 million for the Association by taking part in seven marathons in seven days, we are able to do just that. This year, the Association has announced it will be boosting its investment in MND research by £5.7 million – pushing forward clinical trials, the discovery of new drugs and potential new treatments. With optimism surrounding MND research growing all the time this investment is crucial - and is a clear demonstration of the Association’s intent to drive MND research forward. At the same time, we need the Government to get behind us and increase the money it invests in targeted MND research. Together with leading MND experts, people living with MND and our partners at MND Scotland and the My Name’5 Doddie Foundation, we’re calling on the Government to invest £50 million over the next five years to help researchers keep up this growing momentum. As part of our campaign #UnitedToEndMND, we have launched a petition, urging the Government to help us create a virtual centre of excellence which will take us even closer to our vision of our world free from MND. Please take a moment to sign the petition – you will find a link at www.mndassociation.org/unitedtoendmnd. In the meantime, you can read more about Kevin’s story and news of our investment on pages 6 and 7. We are so grateful for your continued support.

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

Sally S ll Light Li ht Chief Executive

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Flashback to 2019 when the Scrap 6 Months petition was handed into Downing Street

Association calls on Government to end Scrap 6 Months delay

EOPLE living with MND are still waiting for the Government to approve vital changes to the benefits system. In 2018, the MND Association and Marie Curie launched a campaign called Scrap 6 Months, which called on the Government to make it easier for people living with terminal illnesses like MND to access the benefits they need. At present, to access the Special Rules for Terminal Illness fast-track process, there needs to be ‘a reasonable expectation of death’ within six months, something which is almost impossible to predict in conditions like MND. As a result of our campaign, the then Work and Pensions Secretary, Amber

Rudd, promised to review the process. Since then, the Department for Work and Pensions (DWP) has committed to reforming the six-month rule, but the changes need approval meaning that people living with MND are still waiting. “The Government must put an end to the delay and urgently deliver on their commitment to reform the six-month rule and we hope they will remove the requirement for terminally ill claimants to be reassessed after three years.”

The MND Association’s Head of Policy and Campaigns, Susie Rabin said: “While it is understandable the Government is

focused on dealing with the coronavirus pandemic, it is vital they do not ignore the thousands of people with MND and other terminal illnesses who are dying without the support they need. “The Government must put an end to the delay and urgently deliver on their commitment to reform the six-month rule and we hope they will remove the requirement for terminally ill claimants to be reassessed after three years. We need a guarantee that this will not be pushed aside any longer and will be passed into law in the next parliamentary session.” For more information about Scrap 6 Months and how you can get involved visit www.mndassociation.org/ scrap6months

Spread a little sunshine by taking part in our summer raffle

OU could win a top prize of £5,000 simply by taking part in the Association’s summer raffle. Tickets costing £1 each are available now and you’ll find more details about how to take part within your Thumb Print mailing. Alternatively, you can

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enter online at www.raffleentry.org.uk/ mnda. Raffle entry closes on Friday 9 July and the winner will be drawn a week later. As well as buying tickets yourself, you can also sell them to friends, colleagues and neighbours. If you’d like more,

please call us on our raffle line on 0330 002 0342. Regulations mean that you must be over 16 years of age to play. Entry is open to all UK residents excluding those in Northern Ireland, Guernsey and the Isle of Man.

Keep up to date with MND Matters wherever you are K EEP up to date with the latest news from the MND Association by downloading our new podcast, MND Matters. Launched earlier this month, the podcast offers a blend of interviews, chat, information and informal advice and will help to raise awareness of MND and the Association’s work. The Association’s Director of External Affairs, Chris James said: “We are excited to be launching our MND Association podcast, MND Matters, which has been developed by a team of staff working with people living with and affected by MND. As well as providing a new way for our community to engage with our support and information, it is an opportunity for the wider community to hear the stories of people affected by MND first-hand.”

him to run seven gruelling marathons in seven days and led to £2.2 million being raised to support people living with MND and fund vital research. They are joined by Jonathan Griffiths who is also living with MND. In the coming months, the podcast will explore a range of subjects from communication to relationships, family and care.

Episode one, which is available now, features the Director of Rugby at Leeds Rhinos, Kevin Sinfield, in conversation with hosts Stephanie Steward and Nick Cole about his friendship with Rob Burrow, who is living with MND. He talks about how their friendship inspired

“As well as providing a new way for our community to engage with our support and information, it is an opportunity for the wider community to hear the stories of people affected by MND first-hand.”

MND Matters is available to download from your usual podcast platform. You can also visit www.mndassociation.org/ podcast for more information.

Date is set for Association’s global research Symposium

Last year’s Symposium was broadcast from a Covid-secure studio at the Association’s offices in Northampton.

HE world’s leading experts in MND research will come together online for the Association’s 32nd International Symposium on ALS/MND which is being held in December. Following on from the success of the Association’s first virtual Symposium last year, and ongoing challenges caused by the global pandemic, the decision has

been taken to hold this important event online from 8-10 December 2021. Last year’s Symposium was broadcast to the world from a Covid-secure studio at the Association’s offices in Northampton and attracted 1,800 delegates from 48 countries. The success of the event created a real buzz on social media with many of those

taking part praising it as a ‘landmark achievement’. In the coming months, the programme will be developed and details about how to register will be made available. To keep up to date with the latest news head to www.mndassociation.org/ symposium. www.mndassociation.org

MND research to re of funding, thanks

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ceive £5.7 million to Kevin – and you Kevin’s 7 in 7 Challenge last December raised £2.2 million and since then Kevin, Rob and the Association have been discussing the best way to spend the money to benefit people with and affected by MND. With that in mind, we are excited to announce that money raised from Kevin’s fundraising pot will be channelled into six areas of the Association’s work: • Further developing our services for children and young people • Our care centre and network programme • The Association’s MND Connect helpline • Our regional team in the north • Helping more care centres and networks get involved in clinical trials • Translational research – researching potential treatments for MND from drug discovery and development through to clinical trials The work will span around three years with 40% of the funds being spent on new projects to further benefit people with MND. MND Association Chief Executive Sally Light said: “Kevin was impressed by the breadth of the work we undertake and was particularly keen to support those services which have benefited Rob and his family – having seen first-hand the positive impact of those. This money will make a real difference not only now but into the future as we use it to explore new ways of providing support.” Around a quarter of the money raised by Kevin’s 7 in 7 Challenge will be targeted towards research. This extra funding for MND research is a demonstration of our commitment as an Association to see that happen. And, of course, our work lobbying the Government to follow our lead and invest in targeted MND research will continue. As a result of the heightened awareness created by Kevin and Rob leading to more fundraising activity, and our community’s incredible response during the pandemic, the Association has announced it will commit an extra £2 million to MND research on top of that – and that’s in addition to the £3 million already committed this year. Sally added: “We, as a community, are impatient to find

treatments for MND. This extra funding for MND research is a demonstration of our commitment as an Association to see that happen. And, of course, our work lobbying the Government to follow our lead and invest in targeted MND research will continue. “In the meantime, thanks to the efforts of Kevin and our many thousands of supporters, we will carry on providing the support people with and affected by MND need now.” You can listen to Kevin talking about his work with the Association on the first episode of our new podcast – MND Matters. Find out more on the website www.mndassociation.org/ podcast For the latest MND research news turn to pages 8 and 9. Read more stories from our 7 in 7 fundraisers – pages 10 and 11.

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Putting clinical tria The race to find a vaccine for coronavirus has put clinical trials very firmly in the spotlight – What are they? How long do they take? Is there anything the research community can learn to help us develop treatments for MND more quickly? Here, we explain more about the process and what it means for people living with MND.

EFORE any new medicine can be used to treat people in the UK, it goes through a strictly monitored, development process. This involves researching the medicine in the lab and testing it in clinical trials which can take many years. After passing all stages of the clinical trial, a licence must be granted before a treatment can be made available for wider use. Licences are only granted if strict safety and quality standards are met. In the UK, licences are granted by the Medicines and Healthcare products Regulatory Agency (MHRA), and in Europe by the European Medicines Agency (EMA). In the USA, approval is given by the Food and Drug Administration (FDA). Licences confirm the illness, symptoms or disease the medicine should be used for and the recommended dosage

From discovery to approval Pharmaceutical companies and research institutes develop or screen molecules to find those that might have a positive effect on a disease. These are then tested in the lab. The organisation must then apply to the regulatory authority for the country or countries where the trial will take place for permission to conduct clinical trials on people. If the research request is approved, the drug will enter the first of three phases of clinical trials to test whether it is safe and whether it works. Trial drugs are usually tested against another treatment – this will either be a placebo (a dummy drug) or another treatment that is already in use. After the three phases of a clinical trial

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have been successfully completed – and it is important to remember that a clinical trial can be stopped at any point - the organisation must then present the data from the trials to the appropriate regulatory authorities. Within these agencies, a team of doctors, statisticians, chemists and other scientists review the company’s data to establish whether the drug overcomes the three hurdles for safety, quality of manufacture and efficacy, and whether the benefits of taking it outweigh the risks. If they approve the drug, they also decide whether it should be available over the counter at a pharmacy or only on prescription. It is at this stage that the manufacturer will decide what price they will set for a new drug on release in a new country. NHS appraisal Once a new medicine has been licensed in the UK, it needs to be appraised by the bodies that decide whether it is a cost-effective treatment to provide on the NHS. The NHS is legally obliged to fund medicines recommended by these bodies, usually within 90 days of receipt of the recommendation. The bodies that appraise new drugs are: • England – National Institute for Health and Care Excellence (NICE) • Wales – NICE/All Wales Medicines Strategy Group (AWMSG) • Scotland – Scottish Medicines Consortium (SMC) • Northern Ireland – Department of Health (DoH) NICE considers many cost-related factors when deciding which drugs to

ls in the spotlight approve for use by the NHS but has made significant changes in recent years to allow for certain drugs to be granted special treatment. This means that very expensive drugs which are used to treat ‘very rare diseases’ (diseases that affect fewer than 1 in 50,000 people), are made available freely through the NHS. However, NICE has adopted a strategy of attaching restrictions to the use of these medicines through the NHS, meaning that people in England may struggle to receive an expensive drug even after NICE has approved it. NHS doctors must be able to justify that a patient meets all the necessary criteria to receive the drug. In Scotland, the SMC issues guidance on treatments for use by the NHS, and in Northern Ireland, NICE guidance is generally accepted once is has been checked by the DoH for any policy and financial consequences. Monitoring approved drugs Once a drug has been approved and made available, it will continue to be carefully monitored over the first few years of use to ensure it is as safe as possible. In rare cases, medicines may be withdrawn if there are serious safety concerns or the risks of using the medicine outweigh the benefits. This continued assessment is often known as Phase 4 in the clinical trial process. The coronavirus response The pandemic firmly placed the clinical trial and drug approval process in the public eye, sparking discussion about how the collaboration, short development and approval time seen for vaccines could be replicated for other drugs. Prior to the pandemic, clinical trials were already beginning to move away from their traditional format to become more inclusive and more efficient. In the midst of the pandemic, clinical trial centres had to quickly adapt their protocols so that trials could continue

with minimum risk. They found ways to incorporate remote monitoring and alternative methods of assessment. This appears to be working well and many have said that they will continue with these new ways of working going forward. The speed at which vaccines have been approved has raised some questions about the length of time it takes for other drugs to be approved. The MHRA used a ‘rolling review’ process – a regulatory tool that is used to speed up the assessment of a promising medicine or vaccine during a public health emergency. This enables regulators to see clinical trial data in real time so new drugs can be assessed in the shortest time possible. The review will continue as data from ongoing studies becomes available. What does all of this mean for the development of treatments for MND? Although there are several clinical trials with participating centres in the UK, and many researchers carrying out promising preclinical studies, we are still a long way from any new therapies for MND being put forward for marketing approval in this country. Five trials are in Phase 3, although some of these drugs (such as IL-2) are licensed to treat other diseases. Many of these trials also have active sites in other countries and marketing authorisation may be sought there before an application is made in the UK. The drug discovery, trial and approval process can take more than ten years. It is long and expensive with very few investigational compounds even making it out of the lab. It is encouraging though, that despite this, there are many pharmaceutical companies and research institutions which are continuing to look for new treatments, and ultimately, a cure for MND. We can look forward to the future with hope. www.mndassociation.org

HEN Kevin Sinfield completed seven marathons in seven days after being inspired by his friend and former teammate Rob Burrow, not only did he raise a huge sum of money himself, he also inspired an army of others to do the same. So far, 468 people have signed up to complete their own 7 in 7 challenges, raising an incredible £213,647. Kevin said: “I’ve been absolutely blown away by the number of people who’ve decided to take on their own 7 in 7 challenges to raise money for the MND Association. “When I was completing my own challenge, I never imagined it would inspire so many others to get out running, walking and cycling to raise money themselves. It’s been humbling to hear the stories of people getting involved; from members of the rugby league community who want to show their support for Rob, to families affected by MND, to those who’ve just heard our story and been inspired to get their running shoes on. MND isn’t uncurable, it’s underfunded. That’s why we need more people to take on the challenge to help us get closer to finding a cure.” Leeds Rhinos fan Isaac captured the hearts of both the rugby league community and fellow 7 in 7 challengers. His parents posted daily videos on social media documenting the eightyear-old’s challenge which saw him run a mile every day for seven weeks, even on Christmas Day. A number of players shared messages of support for Isaac, including Kevin himself who said he was ‘chuffed to bits’ for the young fundraiser as he reached the end of his gruelling challenge. Isaac completed his 49 miles by running from the Rob Burrow mural in Leeds City Centre to Headingley Stadium, saving enough energy to do a lap of the pitch with club mascot Ronnie the Rhino. Other young rugby fans were inspired to take part too, including eight-year-old Ava-Jane who ran a mile every day for seven days. Ava-Jane said: “I wanted to raise money for Rob Burrow and other people living with MND to help them have a better quality of life - especially those with small children. I decided to

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Fundraisers ta own 7 in 7 Cha

Clockwise from top left: Fiona Brice and her son Robert, Graham Berry, Hannah Campbell, Nathalie Dawson, Isaac with his parents

do 7 in 7 especially after seeing Kevin Sinfield do his marathons, he became my inspiration and I wanted to raise as much money as he did.” Although Ava-Jane didn’t quite make the £2.6 million raised by Kevin, she did raise a whopping £1,080. Supporters from across the rugby league community have joined the challenge. Lifelong Wigan Warriors fan Graham Berry said: “I don’t think there are any followers of our great sport that haven’t been moved by Rob’s story. Teams don’t matter in rugby league. It doesn’t matter that Rob played for Leeds Rhinos, he’s one of ours. The way that

Rob has brought us together, and the way that Kevin Sinfield has inspired and motivated not just me but many like me, is the rugby league family at its very best.” While many were inspired by Rob and Kevin’s story, many of those who joined the challenge had also been affected by MND themselves. Fiona Brice, who took part with her 13-year-old son Robert, lost her dad to MND in 2018. She said: “I’d been wanting to fundraise for the Association for a long time but hadn’t found the right challenge. Seeing someone who was still mentally and physically fit - even in his 80s - deteriorate so rapidly and seeing the impact that

ke on their llenge

Ava-Jane

had on Mum, was devastating”. While Fiona ran seven miles each day to cover her miles, Robert chose to cycle. Together they raised £756. Chris Frost took part after his fatherin-law died in April last year, just four months after being diagnosed with MND. He said: “Les was an incredible man. He was the life and soul of the party, nothing was too much to ask of him.” As a keen runner Chris decided to use his hobby to raise funds for the Association. When injury forced him to postpone taking part in an ultramarathon, he set himself the challenge of covering shorter distances and so signed

up for 7 in 7. The challenge helped him hit 1,000 running miles over the year. Hannah Campbell’s dad died of MND 22 years ago, when she was just 16 months old. Since then, her mum Pauline has taken part in a number of fundraising challenges and raised more than £100,000. “I always saw my mum as an inspiration and wanted to one day follow in her footsteps by completing my own challenge for MND. When I saw the 7 in 7 Challenge I knew it was a perfect opportunity for me to get involved. I only took up running at the start of the first lockdown back in March

2020. With me working from home and the lovely weather, it was a perfect opportunity for Mum to train me up!” Hannah and her mum ran 7 km each day. She also encouraged family and friends to complete their own 7 in 7 challenges. She said: “On the dark and cold nights when I didn’t want to go out, getting sent a selfie from a friend or family member completing their challenge lifted my spirits and encouraged me to keep going.” Hannah received 144 donations and raised an incredible £3,888. After cycling more than 1,000 miles during the first lockdown, Nathalie Dawson decided to get on the road again as part of her own 7 in 7 Challenge. Nathalie’s dad Bob was diagnosed with MND in 2018 and died in June 2020, shortly after Nathalie completed her challenge. As a former rugby player, spurred on by the success of Kevin Sinfield’s 7 in 7 Challenge, Nathalie decided to get involved, running, walking and cycling to cover the miles. She said: “I realised after losing my dad to MND in July that I needed something positive to kickstart 2021. “I joined the amazing 7 in7 for Team MND Facebook group for inspiration and support. I could see lots of people walking and running but I also love cycling. I couldn’t decide what to do so I decided to do all three!” “I got my bike serviced by my friend and he suggested that members of his Cycle Stars Race Club might like to get involved. Lots of them took up the challenge and donated to my JustGiving page. “From then on I booked slots with friends who wanted to join me. I was fully booked! Each time I went out I would wear my MND Association vest and snood, while my buddy would pop one on top of their clothes too. I’m always proud to represent the Association.” If you’ve been inspired by these incredible fundraisers, it’s not too late to join the team and complete your own 7 in 7 challenge. Visit www. mndassociation.org/7in7 to sign up. www.mndassociation.org

Candidates asked to sign Ymgeisydd wedi’i gofyn i up to Welsh Manifesto cefnogi Maniffesto Cymru

ANDIDATES for Welsh Senedd Election have been asked to help improve the lives of people living with MND. As part of its campaign activity in the run-up to the elections in May, the Association is urging political parties and their candidates to sign up to its Welsh Manifesto.

The manifesto calls for:

AE ymgeisydd Etholiad Seneddol Cymru wedi’i gofyn i helpu gwella bywydau pobol sydd yn byw gydag MND Fel rhan o gweithgareddau ymgyrch tuag at yr Etholiad ym mis Mai, mae’r Cymdeithas yn annog pleidiau gwleidyddol a’i ymgeisydd i cefnogi’r Maniffesto

Mae’r Maniffesto yn galw am:

• The implementation of the current Neurological Conditions Delivery Plan – a long-term strategic approach to raising standards in treatment, services and support for people with living with MND

• Rhoi’r Cynllun Cyflawni Niwrolegol presennol ar waith – ymagwedd strategol hirdymor i godi safonau triniaeth, gwasanaethau a chymorth ar gyfer pobl sydd yn by

• Improvements in NHS Continuing Healthcare (CHC)

• Gwelliannau yng Ngofal Iechyd Parhaus (GIP)

• The delivery of safe and accessible homes for people living with MND

• Cyflawni cartrefi diogel a hygyrch i bobl ag MND

• Support for unpaid carers. Sian Guest, the MND Association’s Policy and Public Affairs Manager – Wales said: “We believe all political parties and candidates should commit to our ‘asks’ to help improve the lives of people living with MND, their families and carers.” To read the full manifesto, visit www.mndassociation.org/ healthcarepolicies If you live in Wales, you can email your Senedd candidates and ask them to support the manifesto by visiting www.mndassociation.org/waleselection

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• Cymorth i ofalwyr di-dal pobl sydd yn byw gydag MND. Dywedodd Sian Guest, Rheolwr Materion Cyhoeddus Pholisi Cymdeithas MND-Cymru: Credwn y dylai pob plaid wlediyddol ac ymgeisydd ymrwymo i’n gofynion i wella bywydau pobl sydd yn byw gydag MND, eu teuluoedd a’u gofalwyr yng Nghymru” Darllenwch y Manifesto llawn yma www.mndassociation. org/healthcarepolicies Os ydych yn byw yng Nghymru, allwch anfon ebost I’ch ymgeysydd Seneddol i gofyn iddynt cefnogi’r manifesto gan ymweld www.mndassociation.org/waleselection

‘Association’s research investment is welcome news’

HE Association is delighted to announce it will be investing an additional £5.7 million in MND research this year, thanks to the extraordinary efforts of all our fundraisers, donors and supporters. As our understanding of MND continues to grow, so too must our investment and I know this will be very welcome news for so many of you who live with the devastating effects of MND each and every day. This investment simply wouldn’t have been possible without the support of our community which has done so much to support our work throughout 2020 and I would like to pass on my thanks to all of you for everything you continue to do. Elsewhere, the Association’s AGM will once again take place online on 1 July. During the meeting, we will hear more about the Association’s work during 2020 as well as our response to the coronavirus crisis. We will be launching the Association’s new membership strategy and outlining how members can get more closely involved in the Association’s work, including helping to develop content for Thumb Print. While nominations for the trustee elections have now closed, voting will soon get underway and you will find all the details you need about how to take part on page 14. I do hope you will be able to join me. Richard Coleman, Chair of the Board of Trustees

Car giant selects Association for three-year partnership OYOTA is joining forces with the MND Association to help raise money and awareness of MND. As part of the three-year partnership which started on 1 April, Toyota (GB) and Toyota Financial Services will take part in a range of activities including sponsored walks, auctions and a Director’s Challenge.

“We are confident that our combined focus and efforts over the next three years will have a positive impact on the quality of life for those living with and affected by MND and we very much look forward to working with Toyota’s staff.” The MND Association was selected to be Toyota’s national charity partner through a staff-driven selection process in which all employees were given the opportunity to nominate a charity and then vote for their preferred good cause from a shortlist. The Association’s Director of Fundraising, Linda Allen, said: “‘Everyone here is so excited that the Association has been

selected as the new charity partner of Toyota. We are confident that our combined focus and efforts over the next three years will have a positive impact on the quality of life for those living with and affected by MND and we very much look forward to working with Toyota’s staff.” Agustín Martín, President and Managing Director, Toyota (GB), said: “As a company focused on achieving ever better mobility for all, we were very impressed with the MND Association’s strong focus on improving mobility through wheelchair adaption, to enable independence for those living with the disease. The MND Association was the smallest of the charities considered for our national charity partnership, so we hope our fundraising over the next three years will give a significant boost to the support it can offer to people living with the disease and to invest in research that will increase understanding of the disease, develop treatments and ultimately a cure.”

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Your invitation to the Association’s AGM 2021

OLLOWING the success of last year’s Annual General Meeting (AGM) held online in October, an Extraordinary General Meeting (EGM) was held in March during which members voted to change the articles of Association to allow future AGMs to be held online when necessary. With the continued safety and wellbeing of our members and staff in mind, the Board of Trustees has taken the decision to hold this year’s AGM as an online event on 1 July. In addition to a presentation of the Association’s 2020 financial performance and a celebration of the amazing work our MND community does to support people living with and affected by MND, the AGM will give our members the chance to meet the Association’s newly-elected trustees who will be formally appointed to the Board. Chairman of the Board of Trustees, Richard Coleman, will also introduce his successor, the Chair-Elect who will take up office in 2022. The Association’s new membership strategy will also be launched, giving members the opportunity to become much more closely involved in the Association’s work as we push ever closer to our vision of a world free from MND. The more formal business of the AGM will be followed by our keynote speaker, Professor Chris McDermott, Professor of Translational Neurology at SITraN and a Consultant Neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust. During his speech, Professor McDermott will explain more about the clinical trials taking place in Sheffield, developments in microbiome projects and plans for the future. We will be contacting all members during June with details on how they can register to attend this year’s AGM.

Sign up now to get your AGM Voting Pack by email and help us save money Producing and distributing election packs is a costly process, diverting vital resources away from our work for people with MND. As in previous years, we are asking members who are able to provide their email addresses to the Association in order to receive all the information they need about voting at the AGM by email. Your email address will only be used for this purpose and any future membership communications and will help us save money. You can change or stop these communications at any time. If you have already provided your email address you don’t need to do anything, but if you would like to sign up for your membership information to be sent by email in future, please go to www.mndassociation/agmnopost

Professor Chris McDermott will be the keynote speaker at this year’s online AGM

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‘So grateful for support after being diagnosed with MND in lockdown’

HEN Nilesh Topiwala was diagnosed with MND during lockdown last year he never could have imagined just how much support he would receive from friends, family and colleagues around the world. So far, Nilesh has raised £28,253 for the Association thanks to the incredible support of those closest to him including his colleagues at Next in Leicester where he continues to work as a senior fabric technologist, suppliers from across the globe, friends in the UK and abroad and family members in India. Nilesh said: “I am overwhelmed by the support I have received; it really has been wonderful. I never would have expected it. “My managers and colleagues at Next have been amazing. When I told my manager, she was shocked, but they have done everything they can to help me carry on working. I have every intention of working until I physically can’t as my job means everything to me. I’ve been working in fashion all my life.” Over Christmas, his colleagues took part in a number of fundraising events including raffles, a cute pet competition, Christmas Olympics and many more. A spokesperson for Next said: “Nilesh is a highly-respected, valued and popular member of our team. “His diagnosis was a shock to us all and initially we felt quite helpless. However, Nilesh’s positivity under such challenging circumstances was, and still is, truly inspiring. The Christmas charity fundraisers gave us a much-needed, positive focus and a way to show our support for Nilesh.” “My managers and colleagues at Next have been amazing. When I told my manager, she was shocked, but they have done everything they can to help me carry on working.”

Nilesh was diagnosed with MND during the second lockdown in October, having experienced problems with his speech since the start of 2020.

Nilesh’s colleagues from Next took part in a number of events to help raise money for the Association

Nilesh Topiwala pictured with his family

After a series of tests – and losing around 10 kilos in weight – he was diagnosed with MND. He said: “It was a huge shock. My symptoms are bulbar, and I have been given a life expectancy of three years. “There are times when I don’t give it a second thought and I carry on my life as normal, then there are others where I struggle to speak. It is affecting my fine motor skills – it can take me ten minutes just to button up my shirt. “I had a PEG fitted in January. For the first few weeks it was very uncomfortable, but it is fine now.” Nilesh is being supported by his wife and two daughters, both of whom are training to be doctors. He said: “My wife has been a rock and has been amazing in looking after me. She makes sure I get the nutrition I need by cooking fresh meals every day and helping me to exercise. “The team at my local hospice is also very good. I have a respiratory nurse, dietician and a speech and language therapist who help me. I am being looked after very well and I am very grateful.” For more information about Nilesh’s fundraising, or to donate, visit www.justgiving.com/fundraising/nilesh-topiwala www.mndassociation.org

‘How we turned fundra Hi everyone,

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Ali the Alligator

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Eric the Elephant

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Meet my other buddies

ising into a game!’ “H

I, my name is Zak and I am 11. art “Last weekend my siblings and I took part in the GameOver MND event. We spent 188 hours over Saturday and Sunday raising funds. “A lot of people have asked why we did it. We did it because a year ago our Grandad was diagnosed with MND and we’ve quickly realised how horrible it is. Grandad was told he had two years left with uss and we are one year into that. “We feel helpless but this was something we could do. My brothers and sister all joined in. We raised £75 and had lots of fun! We plan on raising some more money soon. My dad wants to take 10,000 steps every day in May when the weather gets warmer. Here are some pictures from over the weekend!”

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Fundraisers unite to say G

AMING fans of all ages came together in February to take part in the Association’s first ever #GameOverMND fundraising event. More than 50 avid gamers came together on February 6 and 7 to take part in the gaming marathon in return for sponsorship, with many sharing livestreams to encourage others to get involved and donate.

Ten-year-old Riley took part and raised £380 in memory of his grandad, who died before he was born. Riley’s mum Charlotte said: “I have a picture of my dad in the living room window and I’ve always told my children who that is. My dad’s mum also died of MND and I never had the chance to meet her. So, to do something that raises money for the Association is just amazing.” Stewart joined the challenge with his wife and friend. Together they completed an eight-hour Minecraft building challenge, constructing a castle using materials to work through different ages, including stone, iron and diamond. Stewart decided to fundraise when his aunt was diagnosed with MND. He explained: “When Mum mentioned how much the Association had already done for my aunt, it made my mind up that I wanted to help repay the care shown to her in the form of fundraising. “Gaming has always been a way of just getting away from real life –

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immersing yourself in a good game for me is like others diving into a good book.” The #GameOverMND weekend also saw the Association’s first ever FIFA tournament.. A total of 34 players signed up playing a series of knock out games in a bid to be crowned champion. Jack, 13, whose dad is living with MND, won the Xbox championship. His mum Lynsey said: “Jack has wanted

to complete a fundraiser for the MND Association for some time, but never really knew what to do. So, when a gaming tournament came up, it was the perfect opportunity.” Jack spent most of the day playing matches with other competitors, before finally claiming victory. He said: “I was so happy when I won the tournament. When I signed up, I wasn’t sure I would get through the first round, so to win was amazing!”

#Gameover MND!

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Many of our gamers commented on how gaming, and setting themselves a challenge, gave them something to focus on during lockdown. PlayStation FIFA champion Luca said: “Lockdown has been hard on us all mentally. Having this tournament was good fun and helped occupy the mind, making a change to the repetitiveness of lockdown as well as having fun with the community for a good cause.” FIFA finalist Alfie echoed his fellow

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competitor’s thoughts. He said: “It’s difficult not being able to meet with friends but playing games and talking to them while playing really does keep me occupied.” Alfie heard about the challenge having lost his uncle to MND. He said: “My uncle developed MND in 2017 and it was so quick and violent. It was devastating for us all and left a massive hole in our lives. I hope the money raised will make a difference by funding research to find

a cure for this awful disease. I don’t want anybody to go through the same thing my uncle did.” So far this year our #GameOverMND fundraisers have raised more than £9,000. You can take part at any time during the year, either by hosting a gaming marathon or any type of gaming challenge. Register by visiting www.mndassociation.org/game and we’ll send over a free MND Association T-shirt to wear while you game. www.mndassociation.org

‘I needed to talk about my life with

T might have been a while since Len Johnrose was a pupil at his local school, but their motto ‘aim high, dream big’ continues to be a big part of his life to this day. While the rest of the country ground to a halt for much of 2020, former footballer Len has had one of his busiest years yet – his autobiography, Finding a Way, was published in September and he has also launched Project 92, an exciting and innovative project which will see Len join up with all 92 teams in the English Football League to help raise money and awareness of MND. And, despite having to cancel it three times due to Covid restrictions, Len, who was diagnosed with MND in 2017, has also been working on a Masquerade Ball, due to be held in September, which will see big names from the world of football, entertainment and MND research come together for one night only. Len explained: “For the majority of my life, I’ve been involved in football in some capacity. “There was always a story to tell and, over the years, I have been regularly asked to write a book encapsulating all things football. For the most part, I actually found football quite boring so there was no way I wanted to inflict those thoughts on anyone! “Being diagnosed with MND though, well that was very different. I immediately knew that I wanted to do something that would perhaps help others who had suffered the same fate. I became genuinely interested and intrigued by MND, the way it affected me, and to a greater extent, the impact that it had on others that came into contact with it. There is little as fascinating as being around people so clearly out of their comfort zone. I wanted, no, needed to talk about it. And that is pretty much where the re-emergence of the idea of a book came from. “Anyone who knows me, knows how much I love the sound of my own voice,

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Len, pictured in 2019 with the Chief Executive of the Professional Footballers’ Association, Gordon Taylor OBE

so writing Finding a Way allowed me to say whatever I wanted without being hushed by the family!” Len has never shied away from talking openly about his diagnosis and the impact MND continues to have, not just on him but also his wife Nadine and their family. In November, Len and Nadine took part in a Zoom call to raise awareness among MPs and Peers about the problems they, and many other people who are affected by MND, face when it comes to adapting their home. The issue is being highlighted by the Association’s campaign Act to Adapt. He said: “I explained how certain things that weren’t available for me would be funded if I lived half a mile further up the hill. “I also explained that I was in the fortunate position to call on the

Professional Footballers’ Association (PFA) to help fund adaptations, which otherwise would have meant me having to live as a virtual prisoner, with no way of getting into the garden. “I immediately knew that I wanted to do something that would perhaps help others who had suffered the same fate. I became genuinely interested and intrigued by MND, the way it affected me, and to a greater extent, the impact it had on others who came into contact with it.” “The PFA has funded a powered door, an external lift and a wetroom, but there are so many who not only don’t have the means, but don’t have the time needed for the application process.” Len may have made his last professional appearance for Burnley FC in

MND and help others’

2004 but the football community is never far from his mind. After publicly talking about his diagnosis for the first time in 2018, Len described the outpouring of love and support from players and fans all over the country as ‘overwhelming’. That love and support continues to this day with the launch of Project 92, which has seen Len raise awareness of MND among footballers right across England. With visits to football grounds put on hold because of coronavirus, Len recorded a film which premiered on Sky Sports Soccer Saturday in September. Len explained: “Covid did have an impact on this, which was a tad frustrating but also meant I had time to think. And then, out of nowhere came the idea of the IceFoot 92 Challenge. “We’ll be asking people to put their

feet into freezing cold water for 92 seconds – just like footballers do – to raise money for the MND Association. “I have enticed names such as Charlotte Hawkins, Jeremy Vine and numerous others, into taking on the challenge. We’ve also managed to involve PFA Chief Executive, Gordon Taylor, who is engaging with all 92 league clubs, hoping to get their support. “Another supporter is the Leeds Rhinos, who are doing so much to help their former player Rob Burrow. There’s even a chance that designer Lawrence Llewellyn–Bowen will be dipping his feet in the water.” Footballers including Stephen Darby, who is living with MND, former England captain Stuart Pearce and Manchester United legends Alex Stepney and Frank Stapleton will also take part in Len’s fundraising Masquerade Ball which will take place at the Winter Gardens in Blackpool on 11 September. He said: “I have to give a shout out to the committee who have put in so much energy, thought and sheer will, to come up with this remarkable event. “The guest list is incredible; we already have Coronation Street’s Daniel Brocklebank, Wallace and Gromit creator Nick Park, MND expert Professor Dame Pamela Shaw and the North West’s Sports Broadcaster of the Year, Andy Bayes from BBC Radio Lancashire. There will also be a contingent from Bury FC’s double promotion winners from the mid-90s along with entertainment from, among others, The Commitments and X Factor winner Matt Cardle. “Everyone will be in need of a great, fun-filled night by the time September comes, and we really want to give people an experience to remember. “As we use to say at my old school, ‘aim high – dream big.’” For more information about Project 92 and Icefoot 92 visit www. mndassociation.org/icefoot. For tickets to Len’s Masquerade Ball visit www. wintergardensblackpool.co.uk/whats-on/ masquerade-ball Len’s book Finding a Way is available now from Amazon.

Where will your Ultra Challenge take you next?

ITH 14 events to choose from across the UK, the first challenge our Ultra Challenge participants face is selecting the right trek for them. While some are drawn to the dramatic Dorset coastline for the Jurassic Coast Challenge, others pine for the picturesque villages of Gloucestershire and can’t resist the Cotswold Way. Those looking for a slightly flatter route can join the Thames Pathway Challenge which takes walkers from the capital to Henley-on-Thames. One Ultra Challenge just isn’t enough for some of our dedicated #TeamMND supporters. Paula Solomon has six challenges under her belt, including the Cotswold Way, London 2 Brighton Challenge and the Thames Path Challenge. This year she’s planning to tackle the Peak District Challenge in July, in memory of her husband Dave who had MND. She said: “When Dave was diagnosed with MND we contacted the MND Connect helpline which offered emotional support and help with finances. We also had a grant to help with the costs of a wetroom which was a huge help. I know firsthand how the money raised from these events makes a difference.” Ultra Challenge events are open to participants with varying abilities. Most offer 25, 50 and 100km routes to choose from and participants can run, walk or jog the distance. In addition to spectacular views and camaraderie, participants benefit from plenty of well-equipped rest stops with refreshments and recovery spaces offering a boost to the finish line where a celebration BBQ and glass of fizz await. Sign up to join an Ultra Challenge with #TeamMND for as little as £5 registration fee and £245 minimum fundraising pledge. Visit www.mndassociation.org/ultra for more information.

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‘Being a trustee helps me to With the Association’s AGM and trustee election taking place this summer, we meet four more of our trustees who explain more about their role and how they became involved with the Association’s work.

Vicky Paeschel

Andy Cawdell

Catherine Knights

Shaun McGee

Vicky Paeschel “I lost my mum to MND in 2008 – she was only 39 then and left behind six incredibly loved children. Coping with this heartbreaking loss has been incredibly difficult but I have been determined to keep her memory alive. “In 2017, I started fundraising and volunteering for the MND Association, hoping to make a difference to others affected by this devastating disease. Having volunteered with my local branch, I was invited to join the MND Association’s Engagement Committee in September 2017 as a co-opted member to bring people together, link up fundraisers, local branches, and groups across the country. It was the experience of using my views, ideas and experience to support the Association, that made me want to become a trustee. It was yet another way to give something back to a cause that I truly care about and that means a lot to me. “When Mum’s health started deteriorating, I became her main carer while also helping to raise my younger siblings – I

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was 18 then. As part of the Board now, I can bring in a young carer’s perspective and experience. I am also passionate about ensuring that volunteers, like myself, always feel valued and their efforts are recognised by the Association. I am an advocate for collaborative working and networking and have a lot of experience as a fundraiser. “The past year has been tough, but as a community we have all pulled together to continue our support for people living with MND, their families and carers. I would like to take the opportunity to thank our volunteers, members, supporters, and fundraisers for all their efforts in these uncertain times.”

Andy Cawdell “I became a trustee because, as a management consultant in the not-for-profit sector, I have always had up to three voluntary roles at any one time to put back into the sector that pays my fees something that helps it and helps me understand what is going on from a different perspective. I was also pointed

keep Mum’s memory alive’ towards the MND Association because of my diagnosis of MND. “I have been a trustee for just over a year and have slowly taken subsidiary roles as a member of the Finance and Audit committee, the Governance committee and the Biomedical Research Advisory Panel. “I understand charity organisation leadership, governance, finance and fundraising and have tried to help in various aspects under these headings. As a person living through MND I also bring this dimension to my participation, for example being a fervent supporter of the new work that is being undertaken with those who are living with MND with young families and the different needs of those of us that are older with children who have flown the coop. “I hope for a continuing development of engagement with more and more people with MND and their carers and loved ones and that development and other things leading to a wider understanding of the difficulties and harms created by MND. Beyond that, I hope that the optimistic view taken of the prospects for finding a cure continues in 2021 and that we perhaps find one preferred single pathway towards a solution on which all can concentrate.”

Catherine Knights “My understanding of the devastating impact of MND, not only on individuals, but everyone around them, came from my background as a physiotherapist working for more than 20 years in community settings specialising in the care of people living with MND. This included visiting them in their own homes which gave me an insight into the huge range of challenges faced in all aspects of their lives. “My last role before retirement in 2016 was as the Clinical Care Co-ordinator for the King’s MND Care and Research Centre for six years. During this time, I worked closely with local branches and all aspects of the Association to support people and their families living with MND – my post at King’s was funded by the Association. I always wanted to give something back when the time was right hence standing for election and becoming a trustee in 2019.

“I currently sit on the Care Committee which makes use of my specific skills but have also been involved in other projects including reviewing the current strategy for the Association. “The past year has been extremely challenging for everyone but I am immensely proud of the way the Association and its volunteers and staff responded to the pandemic, rapidly embracing new ways of working in order to continue to support everyone affected by MND. “My hope for 2021 is for a gradual return to some form of normality while retaining the changes that have benefitted people affected by MND. I hope the Association will continue to go from strength to strength enabling it to enhance its support of both care and research for the benefit of everyone in the MND community.”

Shaun McGee “I have a close family member living with MND, so as someone who is affected by MND I’ve been able to see what a complex journey this can be for the patient, family and friends. I’ve also seen how in some ways, the care and advice offered isn’t always ‘joined up’. “My professional background, working as an NHS Consultant and experience working with other charities, has given me skills that I anticipated might be of potential benefit to the Association. I was therefore delighted to become a co-opted trustee in early 2020, just as I approached retirement.” “I am now a member of the Care Committee, Technology Project Board and the Diversity, Equality and Inclusion Project Board and this is certainly one of the most interesting and varied roles I have held in my career. It has been truly humbling to be part of such a caring and forward-looking community, and to work with a range of people who, whatever their skillsets and professional backgrounds, all carry such passion for the cause of the Association. “In 2021 I hope the whole community continues to stay safe and that the Association’s financial performance is sustained so that we can maintain our commitment to care and research for all patients living with and affected by MND. I look forward to contributing my best efforts as a trustee to bring this about.”

For more information about this year’s AGM please turn to page 14.

Voting opens 3 - 29 June

Elections will take place in June this year and in addition to resolutions, we will be inviting members to vote for candidates for election to the MND Association’s Board of Trustees. Details about how to take part will be issued soon and successful candidates will be appointed at the AGM which will be held on Thursday 1 July. We encourage all of our members to use their vote in this year’s election.

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branchesandgroups

Prestigious research prize is presented to Emily A RESEARCH prize, created in memory of much-loved Northern Ireland Branch member, Arthur Newell, has been presented to a third year medical student in Belfast. The Arthur Newell Medal and Essay Prize was created by the Motor Neurone Disease Association’s Northern Ireland Branch in partnership with the Faculty of Medicine, Health and Life Sciences at Queens University Belfast, in memory of Arthur who died from MND. The award aims to encourage third year medical students to learn about the disease and consider neurology as their chosen area of expertise. In January, the award was presented to Emily Boyd during an online ceremony hosted by Queens University. Emily explained: “Motor neurone disease is a condition that medical students rarely encounter on the wards. After speaking with a patient whose husband had died from MND, I realised just how little I knew about the condition. Although I had read about MND in textbooks I had a limited understanding of what a diagnosis of MND would mean for patients and their families. “The Arthur Newell Award has provided me with an opportunity to expand my knowledge and understanding of the different aspects of MND.”

“The Arthur Newell Award has provided me with an opportunity to expand my knowledge and understanding of the different aspects of MND. I chose to research the use of gastrostomy in the management of MND. I was surprised by the importance of timing to gastrostomy and the benefits of early gastrostomy insertion in MND. I was also interested to learn of the factors which influence patients’ decision-making and how healthcare professionals can use a patient-centred approach to improve outcomes.” Association trustee and vice chair of the Northern Ireland Branch, Siobhán Rooney, congratulated Emily on her award and wished her every success in her future medical career.

Emily Boyd

Helping to spread smiles during lockdown

VEN lockdown couldn’t stop the Association’s South Yorkshire Branch putting a smile on the face of a group of children affected by MND. In January, a group of children was able to party safely in their living rooms thanks to an event organised by members of the branch and children’s entertainers, DNA. It was made possible thanks to a donation to the group last year. Association visitor and branch member Brian Jackson said: “As a result of the donation we were able to form The Pebbles

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Fund – named after the character in The Flintstones. “We decided that we wanted to hold a party of some kind, but then lockdown happened, and we decided to turn it into an online event. “Five children attended and they had a wonderful time. It’s something we will definitely look at doing again, possibly with a science theme next time.” More information about the South Yorkshire Branch is available online at www.mndassociation.org/southyorkshire or on Twitter @SYMNDA

Caitlin O’Reilly pictured with her mum Kirsty, who is living with MND

Fundraisers unite for Run 21 challenge

AST year, more than 100 supporters ran 21 miles during the lead up to Global MND Awareness Day on 21 June, raising an incredible £30,000. This summer we hope even more runners will join the Run 21 team and smash through that incredible target. One supporter who took part in Run 21 last year is Caitlin O’Reilly, whose mum Kirsty is living with MND. She said: “My Mum was diagnosed with a genetic form of MND in August 2019, this came after only a few months of showing symptoms, so it came as a shock to us all. We quickly had contact from the MND Association and were able to see the work that they do. I knew I wanted to be a part of the effort to support the Association’s work. I decided to join the Run 21 challenge one evening when I saw it advertised on social media. We were well into June then, so it meant I was starting the challenge very late; with only 11 days to finish, without having run in a very long time!

“I was a little nervous, but once I settled into it and found a pattern of splitting the distances across the days, I was getting through it well! I was in the process of finishing my final year dissertation and exam revision at the time, so it gave me something else to focus on when taking a break. “The amount of support that I received in this short time was so overwhelming. My mum and I first discussed setting the target at £50-£100, but I finished raising £2,000! We didn’t expect this at all but were so grateful to everyone who donated.” Taking part in this year’s event couldn’t be easier. Simply visit www.mndassociation.org/run21, set-up an online donation page and share it with your friends, family and colleagues. You then have between 1-21 June to complete your challenge and if you raise more than £100, you’ll be able to claim your free Run 21 medal. www.mndassociation.org

Help finding inform T

HERE has never been a time in history when information has been more accessible. We are surrounded by content in print and online and we can search the internet for results on almost anything. Feedback from our members has also shown that people with MND or Kennedy’s disease don’t always know how to find evidence-based information. One member told us recently, “You receive the diagnosis from your neurologist and don’t know which way to turn.” But how do we know if content is evidenced? How do we identify trustworthy information? How do we spot a scam? At the MND Association, we have been producing qualified health and social care information for many years. In short, our content is evidenced, user tested and reviewed by experts. We engage with our readers on all major information projects. Our work is externally assessed and accredited through a national scheme with the Patient Information Forum (PIF). You will see their PIF Tick quality mark appearing on our publications. PIF champions the right for everyone to have access to good health information. Our own commitment to diversity, equity and inclusion reflects this too. We provide a wide range of accessible information formats, including printed publications, digital resources, easy read guides and translations. We have a wide range, but each resource is important, as people have very differing needs. If people have difficulty in accessing or understanding health information, it has a direct impact on their ability to make informed decisions about their care and wellbeing. In response to this issue, many health and social care organisations have committed to the PIF Tick scheme, including NHS departments, related

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services, health charities and commercial health providers. Watch out for the PIF Tick, as this is a good way to spot information that follows a rigorous process in development and review. More organisations continue to join the scheme. Trusted information providers are working together to make it easier for you to find reliable information. Above all, there is a need for clear wording. This is not just to make it readable and easy to understand. Plain

language helps people apply guidance to achieve a positive change, identify symptoms or seek support. However, information is not a solution in itself. Ultimately, it’s about helping you get the best possible benefit from discussions with your health or social care professionals, tailored to your specific needs. People with or affected by MND or Kennedy’s disease often send us positive feedback, but we continuously strive to revise and improve, with your help. Our thanks to everyone who supports our information. We believe that together, we can really make a difference.

ation you can trust

UK informat

ion skills

If you would like to get involved with information review, contact: volunteering@ mndassociation.org

More information See our webpage and publications at: www.mndassociation.org/publications You can also order printed copies from our MND Connect helpline 0808 802 6262 or email mndconnect@mndassociation.org For the full Health Literacy Matters poster and more about PIF, see: www.pifonline.org.uk/resources/publications/ health-literacy-matters-infographic

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Care information update Animation page We have several animations about care related subjects, on relevant web pages. We’ve grouped them together for ease of access on their own page, so you can see them as a suite, at: www.mndassociation.org/animations

Information sheet 6B – Complementary therapies This sheet has been updated to help raise awareness of these therapies and how many people feel they benefit. Information sheet 10E – Work and MND We have revised this sheet to ensure our content remains up to date about flexible working and other employment options, for people with MND and their carers.

Information sheet 1D – How we use your information This sheet has been updated to maintain details about data protection and how we use information, quotes or photos that you kindly share with us.

Coronavirus and immunisation We continue to update our online coronavirus information, including a web page on immunisation, at: www.mndassociation.org/coronavirus

Information sheet 3A – MND care centres and networks We have revised this sheet to explain how we part-fund these services, how they work and how you can access the range of specialist help they offer.

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

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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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 and Kennedy’s disease, and their carers, to develop and improve our information. if you would like to get involved, we have lots of work planned this year, 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

‘A powerful love letter to the great outdoors’

MOMENT to pause, reflect and take in the great majesty of the South Downs can all be found in a book of poetry written by Brightonbased author Jon Brooks. Jon, who was diagnosed with MND in 2019, was inspired by a love of the great outdoors and a passion for walking the South Downs since the 1960s. The result is Flint Wave, a love letter to the place he calls home, beautifully illustrated with photographs by Moya Burns. “The process of writing the book was certainly cathartic and has enabled me to articulate thoughts that I perhaps couldn’t have done any other way.” He explained: “I was always a keen walker but MND has meant that is no longer possible. The poems are based on my recollections and describe the hill paths, the shoreline and the sea. I’ve been influenced by Old English poetry and folk-singing to create the book which was launched earlier this month. “The process of writing the book was certainly cathartic and has enabled me to articulate thoughts that I perhaps couldn’t have done any other way.” A donation from every sale of the book, which is available now from Amazon and Waterstones, will be made to the MND Association.

Jon Brooks, pictured with his book, Flint Wave

Councillors learn more about Act to Adapt campaign

EOPLE living with and affected by MND explained just how important it is to have timely access to safe and accessible homes at a virtual meeting held in February. Association trustee, Andy Cawdell, who is living with MND, Specialist Occupational Therapist Jane Smith, who is affected by MND and Association visitor Debbie Williams were invited to take part in the Local Government Association Labour Conference which was attended by 15 councillors. During the session, all three speakers were able to explain how crucial it is for people living with a condition like MND to have access to homes which suit their constantly changing needs. The Association’s Head of Policy and Campaigns, Susie Rabin said: “It was great to hear from Andy, who shared his own lived

experience and Jane and Debbie on how they support people living with MND to get access to much-needed home adaptations. We’re very pleased to have been joined by such incredible speakers and to have such positive engagement in the session from local councillors, and look forward to working with those who attended to take the campaign forward”. All the councillors in attendance expressed their support for the Association’s Act to Adapt campaign and committed to taking further action in their local communities. Meanwhile, the Association was invited to host a plenary session at the Conservative Councillor Association Conference in March. The session had a broader focus beyond housing and explored how councils can improve their services for people living with MND and their carers. www.mndassociation.org

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Branch marks 40th anniversary milestone A

SERIES of special events is being planned to mark the 40th anniversary of the Northern Ireland Branch. The branch was formed in 1981 by volunteer Barbara McCaughey and was one of the first to be set up following the launch of the MND Association in 1979. During the year, the branch will be hosting a number of events, either over Zoom, or in person, depending on Covid restrictions. Branch chair Stephen Thompson said: “After more than 20 years with the branch I never cease to be amazed by the strength and fortitude of those living with MND and am also eternally grateful to those friends, families and associates who continue to raise funds to enable us to continue our work.” Since 1981, the branch has made a huge impact on the lives of people living with and affected by MND, hosting regular support events, helping to improve care, supporting research, funding posts at the NI Care Network, lobbying the Department of Health NI and supporting countless fundraising events. The branch was among the first to have a Regional Care Adviser when Margaret McElfatrick was appointed. Margaret continued to be involved with the branch after she retired, serving as chair, secretary and treasurer for many years. She continues to support the branch’s fundraising events. In 2013 the branch funded an MND Research Nurse for three years to focus on Palliative and Respiratory Care for people with MND. It currently funds a Respiratory Physiotherapist Pilot and offers an Enhancing MND Care Practice Award for health and social care professionals to enable them to implement improvements in care for people living with MND. There are seven active Association visitors who support people across Northern Ireland, as well as attending the afternoon tea support meetings, which have been a regular event since 2015. They are held at Dobbie’s Garden Centre, Lisburn as well as in Omagh, Londonderry, Newry and Ballymena. Past carers groups have also been formed and several times during the year both groups join together. One person who attended said: “We both very much appreciate the help and encouragement we receive from our Association visitor. Just the right mix of MND business and general chit chat!” Another said: “I like coming to the MND afternoon tea because I meet and can chat to people who also have MND and we can share our stories. I have found it

All photos were taken before the Coronavirus pandemic

invaluable to find out about new aids.” Carers’ well-being days are held at lovely hotel spa venues where carers can access the spa facilities, receive a special treatment and a lovely lunch. It provides an opportunity for the carers to have a break from their caring duties and chat with others. Anne, who is a carer, said: “Thank you again for an amazing day. It was such a lovely treat for us all and I enjoyed every minute! I really felt as if I’d been away for a holiday.” The Northern Ireland Branch has campaigned to get all the councils in Northern Ireland to adopt the MND Charter, something which was achieved in 2020. Members of the branch committee meet with Association visitors and the Association’s regional staff twice a year to review, plan and develop new and improved services to support people living with MND in Northern Ireland. The branch always sends representatives to the Association’s AGM and in 2018 the regional conference was held in Northern Ireland for the first time. “I like coming to the MND afternoon tea because I meet and can chat to people who also have MND and we can share our stories. I have found it invaluable to find out about new aids.” In 2019, the branch agreed to fund a medal and essay award prize for medical students in partnership with the Faculty of Medicine at Queens University Belfast. The funding was launched to inspire third year medical students to consider MND research as a career choice. The award is named after Arthur Newell, a very active and valuable member of the branch committee who lived with MND. Arthur looked after the website and produced various information leaflets, before he died in December 2017. In 2017 Siobhán Rooney, became the first person in Northern Ireland to be elected as a trustee. She said: “My role has enabled me to share my knowledge, experience and skills to raise awareness and influence issues at board level while also being able to share information and good practice from other areas in England and Wales in Northern Ireland to enhance care and quality of life on behalf of people affected by MND in Northern Ireland.” For more information about the Northern Ireland Branch and to learn more about how you could get involved visit www.mndani.com, follow them on Twitter @MNDA_NI or via Facebook at motorneuronediseaseni or email Siobhan at mndani@hotmail.co.uk www.mndassociation.org

Remembering our former trustee and friend,Dr Hilary Walklet D

R HILARY Walklet, a former Association trustee and active volunteer has died. Dr Walklet, who was living with Kennedy’s disease and died in January, served on the Board of Trustees between 2008 and 2014. He was also an active member of the North Lancashire and Cumbria Branch where he served as both secretary and chair. Richard Coleman, Chair of the Association’s Board of Trustees, paid tribute to Dr Walklet’s dedication to the Association’s work. “He was very knowledgeable on the latest developments and research projects with MND. He will be sadly missed by all in our group and the wider MND Association community.”

He said: “Hilary was a much-liked and respected member of the Board. “I gradually learnt of the interesting and varied background to his career - he had been a university lecturer, working particularly with adult students, a parish clerk, had set up and run two small businesses, and had founded and run a branch of the MG Owners Club in Northampton for a number of years. Experience from all of that, in his own very unassuming way, he brought to the Board, and, in addition, as a person living with Kennedy’s disease, his contributions to our discussions helped inform our work on many occasions. “He was a wonderful person to work with and is missed by those of us who remember him. My thoughts, and those of the whole Association are with Hilary’s family at this difficult time.” Trustee Katy Styles, whose husband

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Mark is living with Kennedy’s Disease said: “Hilary was always very generous with his time and advice with the whole Kennedy’s Disease community and to his family. “We met for the first time at an MND Association conference when Mark was

first diagnosed when we had little on our website and when it was hard to find anything about Kennedy’s Disease at all. “His generosity sharing his knowledge gleaned over decades made it all more bearable and he spoke about giving back to the whole community then. He encouraged me to put myself up to be a trustee as we both knew that it was important for people to understand the impacts of more slowly progressing forms of MND.” A member of the North Lancashire and Cumbria Branch said: “Hilary was a strong leader. “Always out tirelessly campaigning and fundraising in all weathers for the Association. He was very knowledgeable on the latest developments and research projects with MND. He will be sadly missed by all in our group and the wider MND Association community.” Another former colleague said: “I knew Hilary for many years, since joining the Association in 2002. “He became Chair of the North Lancashire and South Cumbria Branch within a year of me taking up post as Regional Manager. “Hilary became a well-trusted and respected volunteer. We shared a passion for all things around local history, and latterly, while a trustee of the MND Association, Hilary offered me so much advice that he became almost an informal mentor to me. “We struck up a close friendship and only spoke two days before he died. Hilary will be remembered by us all as a keen advocate for those living with MND and Kennedy’s disease. He will be sadly missed by us all.”

‘Colm was a shining star – he will never be forgotten’ Association trustee and chair of the Northern Ireland branch Siobhán Rooney pays tribute to Colm Davis OBE, a great friend of the Association Branch, who died from MND in January.

T is with great sadness that I write this tribute to Colm, a close colleague and fellow volunteer of the Northern Ireland Branch. Colm was the much-respected former principal of Tor Bank Special School who in June 2017 was awarded an OBE for services to special education. Colm was diagnosed with MND in May 2016 and subsequently retired from his impressive 36-year teaching career in October 2017. Colm’s diagnosis prevented him from taking up his position as President of the National Association of Head Teachers (NAHT). In March 2017, the National Association of Head Teachers’ National Executive Conference was held in Belfast where Colm, a Harley Davidson enthusiast, received a big surprise from a group of bikers from the Northern Ireland chapter of the Harley Davidson Owners’ Group. The bikers were there to support the launch of NAHT’s charity partnership for 2017 with the Association and escorted Colm in style to the conference venue. NAHT President Kim Johnson, said at the time: “Inspired by Colm’s commitment to those with disabilities and his determination to raise awareness of MND, HOG bikers from Belfast agreed to take part in this surprise for him - something I know he will hugely appreciate. I can’t think of a more fitting tribute to the many years Colm has dedicated to the education of children here in Belfast.” Despite the challenges of living

Colm with members of the Northern Ireland Branch committee

Colm, pictured with his family receiving his OBE

with MND, Colm showed tremendous strength and unwavering positivity. Throughout, Colm attended afternoon tea support meetings, fundraising events, branch meetings and continued to campaign and lobby for those living with MND. Colm worked closely alongside staff in Northampton and, in his role as Campaigns Contact, he travelled to Westminster to lobby MPs over real and pressing issues for people living with MND and their families. He also appeared on BBC Breakfast and was interviewed on radio as part of the Scrap 6 Months campaign. It wasn’t unusual to see Colm, fanatic sports fan that he was,

wearing his signature shorts – even at Westminster. In January 2020, Colm was recognised for his tireless contribution at the Belfast Eastside Award ceremony where he was presented with the Eastside Award for Outstanding Contribution – a welldeserved recognition. On behalf of the Northern Ireland Branch we extend our deepest sympathy to Colm’s wife, Vic, and his children Victoria, Amy and Colm Jnr. Colm was a shining a star; always smiling, always thinking of others and always advocating for people living with MND. We will miss you, but we will never forget you.

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Fundraising champion Lin is a real hero

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HE’S our hero’ – that’s how members of the Reading and West Berkshire Branch are describing Lin Jenkins who was recently named West Berkshire’s Volunteer of the Year for 2020. During the first national lockdown last year, Lin held a community fundraising stall at her garden gate, raising a staggering £8,000 in 100 days, when many other fundraising activities were cancelled. Already this year, Lin has raised £1,700 to help support people living with and affected by MND. Lin said: “I was surprised and thrilled to get the award as well as a letter of congratulations from Business Secretary and Reading West MP Alok Sharma. All the local people now know about our work to fight MND.” Garry Poulson, Director of Volunteer Centre West Berkshire, which supported her non-Covid Community Champion Volunteer of the Year nomination, praised Lin’s ‘dedicated, selfless, tireless and focused voluntary work’ which has raised thousands of pounds, awareness of MND and the hopes of people living with the disease and their loved ones. “Her practical steps have resulted in real change,” he added. Association branch publicity officer, Jane Gilbert, said: “We are all so proud of Lin whose inspiring work has made a real difference to people living with MND in Reading and West Berkshire.”

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Fundraisers go the extra mile at virtual marathon event

David Davies, above and right, who is living with MND, pictured with his wife Kim and Joe Kelly from JJK Fitness

YM members have raised more than £12,000 for the MND Association by organising and taking part in a virtual marathon. Director Joe Kelly organised the Beat the Coach 2.0 event as part of JJK Giving Back – a non-profit part of his business which hosts events for local charities. The team at JJK decided to support the Association in honour of gym member David Davies who is living with MND. David is also a member of the Association’s South Herts Branch. David explained: “JJK’s Beat the Coach 2.0 was an incredibly successful team effort which exceeded our wildest dreams regarding the money raised for the branch. “It was all the more impressive given the Covid rules JJK Fitness had to plan around and adhere to. Joe, supported by his brilliant coaches and staff, was unstoppable. “On the day, I was humbled by the level of kindness and generosity shown by so many JJK members, friends and family. It was a truly great occasion and one I won’t forget.” David and his wife Kim joined Joe at the track to support and David even took to the track with walking poles and his wheelchair to help complete his team’s distance.

Joe, who ran a full marathon in just under three hours, said: “JJK Giving Back events have humbled me in 2020, the efforts and money raised by the members are far beyond what I ever expected, and we are only just getting started. “On the day I was humbled by the level of kindness and generosity shown by so many JJK members, friends and family. It was a truly great occasion and one I won’t forget.”

“Beat the Coach mirrors the culture at JJK. I could not have done it without the support of the organisers, members and of course David. He has a very special place in my heart as a member, friend and now extended family. “It was one of the toughest challenges mentally and physically for me but seeing David on the track kept me going.” The South Herts Branch is thrilled to have received this wonderful contribution from JJK Fitness members which will help maintain the support given to people living with motor neurone disease in the area, particularly during these very difficult fundraising times. Thank you to David and Kim Davies, and the inspirational Joe Kelly from JJK Fitness. www.mndassociation.org

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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.

Walking for Andy: Rod Humphrey and his dog Bramble are walking the equivalent of Land’s End to John O’Groats. He took on the challenge to support his friend Andy who has MND, naming the challenge 874 Miles in Andy’s Shoes. Rod said: “Watching the impact of MND on Andy and his family has deeply affected me; you feel so helpless. I’m doing this walk for Andy because he can’t.”

A close shave: Leeds Rhinos fan Ryan Thomas raised £1,296 by shaving off his hair and beard after being inspired by Kevin Sinfield’s 7 in 7 Challenge for Rob Burrow. You can read more about the 7 in 7 Challenge on pages 10 and 11.

For Jann: Stacey Townsend was inspired by her friend Claire to run a marathon in January. The pair took on the challenge in honour of Stacey’s auntie, Jann, who was diagnosed with MND in May last year. Jann and her dog Rocky joined Stacey to walk the final 1.5k of her challenge. Stacey said: “My Auntie Jann now wants to do so much more to support the MND Association as they have helped her hugely. She’s so, so positive and just fab!”

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Showing some skills!: Seven-year-old Bobby raised an incredible £1,230 by running 5k while dribbling a football at the same time. Bobby decided to take on the challenge after being inspired by footballer Len Johnrose, who is living with MND.

In it together: When members of the British Army Unit 12 CS Coy, 1 CS Bn REME were deployed across the UK to assist with the fight against coronavirus, they decided to set themselves a challenge. The unit currently has people serving in various countries around the world on other commitments. Those deployed in the UK set themselves a challenge to virtually visit other members of the unit located in Mali and Kenya. Together this involved running, cycling or rowing a total distance of 5,584 miles. They have raised more than £1,100.

Marathon miles: Nine-yearold Charlie and Luka, seven, wanted to do something to support their grandmother, or Nene as she is known to the family, after she was diagnosed with MND in 2019. They decided to set themselves a challenge to run 26.2 miles in January with a target of raising £1,500 for the Association. Their little legs completed the challenge and they smashed their target raising more than £1,680.

Making every mile matter: Adam Smith completed a 17mile duathlon in honour of Rob Burrow and his teacher from high school who are both living with MND. Adam covered the miles by cycling and running before finishing at Headingley Stadium.

Saying it all without saying a word: Taking on our Silence Speaks challenge was tough for chatty beauty therapist Zoe. She said: “We’re all guilty of taking things for granted. Doing the Silence Speaks challenge really helped me share with my friends and clients a sense of what Mum and others like her who have lost their voice have to face every day.” It meant so much to mum Jackie to see Zoe raise £1,670 in her honour before she died shortly after the challenge. Zoe commented: “I don’t say that Mum lost her battle with MND as she didn’t lose at all, she fought MND with all her might. I will continue fundraising as I know my mum would have wanted us to keep fighting this battle and find a cure.”

Friends united: Danny Horne had every reason to celebrate, after organising a 20-mile walk and raising £11,000. He was joined by small, socially-distanced groups of friends and rugby fans to walk from rugby league club Silsden Storm to Headingley Stadium, home of Leeds Rhinos. They completed the challenge in memory of Phil Stephenson and in honour of Rob Burrow. Danny already has his sights set on his next challenge, the Yorkshire Three Peaks.

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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.

‘I am so grateful Nick has received his jab’ Since the last edition of Thumb Print, many of you have been in touch to talk about your experience of receiving the Covid vaccine. Here, Sarah Martins, whose husband Nick is living with MND, shares her story.

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INCE the first day of vaccinations I’ve been hounding the doctors, begging them for Nick’s jab to protect him. “One day I received a call to take him, as they said if they had to come to the house it would be months. I have a lift out the front of the house, so it helps, but it’s still hard getting him in the car as he has really deteriorated over the last month, but we were determined. Nick hasn’t been out since July. “They booked him in for 2.05pm - I had one last push to see if I could get a jab for me too and was told I would be Group 6. I responded by saying: ‘If I contract the virus, who the hell is going to look after my husband?’ “Later the same day, I got a call saying Nick’s appointment was being changed and that we could both go! The hardest thing for Nick was having to wear a mask, but they were very good and we both received our vaccinations. Now we wait for 12 weeks for part two.” If you have a story to share, please get in touch. You can email Thumb Print editor, Clare Brennan at clare.brennan@mndassociation.org.

‘Thank you Margaret for keeping in touch’

big thank you to Thumb Print reader, Margaret Parsons who got in touch recently to thank us for the magazine, which she has continued to receive throughout the pandemic. Here’s a picture she drew of her fish, Iggy, who has been keeping her company during lockdown. Thank you for getting in touch Margaret and we look forward to hearing from you again soon!

For more stories from the Association’s branches and groups turn to pages 24, 30, 31 and 34

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‘Remembering Mum’

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Y mother died from MND in 2012 and this is my recollection of a very symbolic and sad moment. “This poem also appears on my website www.allisonhill.com. It’s interesting that I have had more feedback on this poem than any other I’ve written, so hopefully it is helping to raise awareness.” Allison Hill Spoon-Feeding You fed me with a spoon that day, For the first time. A tear in your eye, Delight at that memorable milestone, And all those yet to come, Such as learning to talk and handle a fork. Then, I’d make that walk to school and see My world open up in the blink of an eye. All guided by you, my loving mum. I fed you with a spoon today, For the first time. A tear in my eye, Despair at this miserable millstone, All those tasks you can do no more, Such as handle a fork, or simply walk. It won’t be long before you can’t talk, Your world reduced to a slow, blinking eye. My beloved mum, gradually gone.

Allison and her mum

‘Thank you Wendy for your support’

HE Merseyside Branch would like to thank Wendy Prayle for hosting Zoom quizzes during the Covid crisis to raise funds for the Merseyside Branch. There have been three quizzes, with the latest our Christmas Quiz taking place last December. The quizzes, which were most entertaining, raised an amazing £1,600. Moira Furlong, Merseyside Branch

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

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

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

0808 802 6262 mndconnect@mndassociation.org Membership

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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.

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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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