Issuu

The magazine of the Motor Neurone Disease Association

Spring 2020

â€˜We did it!â€™

Tandem WoW back home after world record ride

For mND

GAZE COMPATIBLE

www.mndassociation.org

, part of the

family

Taking action to help people living with MND How the Association is supporting you during the coronavirus outbreak

8 and 9

Helping our researchers to grow The very latest news from MND research

12 and 13

‘The power of their relationship has created waves’ Simon Beacham helps to make a special dream come true

16 and 17

Amelie and Olivia have the recipe for success Special pages for our MND Buddies

20 and 21

Taking your fundraising inside? Top tips just for you! Our advice for raising money safely

30 and 31

Wow! We did it! TandemWoW duo Catherine and Rachael return home after epic 18,000 journey

38 and 39 Your letters

A selection of letters from Thumb Print readers

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: Rachael Marsden and Catherine Dixon arrive home safely after completing their epic journey around the world to raise money for the MND Association and Oxfam. Full story: Pages 30-31. Picture: Oxfam/Alicia Thomasr.

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

welcome… Supporting people living with MND and those closest to them is the most important thing this Association does and in these difficult and unprecedented times, I understand that it is more important now than ever. Whether you are living with MND yourself or care for a loved one, I know the past few weeks will have been incredibly hard and that you will be facing previously unimaginable challenges each and every day. While the situation is developing constantly and Government advice is changing rapidly, I want to reassure you all that you are not alone. The Association continues to respond to the challenges we all face and remains committed to providing all the guidance and support we possibly can during these uncertain times. While we have had to make the difficult decision to suspend branch and group meetings and face-to-face contact with Association visitors, I know our fantastic volunteers are keeping in touch with those affected by MND through regular phone calls, emails, Facetime and Skype. Our teams are also working hard to provide information and support to all those who need it. Our incredible fundraisers – who go to extraordinary lengths to raise money – are also seeing their events cancelled and I want to take a moment to thank all of them for everything they continue to do to support us. While we undoubtedly face challenging times, the Association is robust and well-placed to respond to the current uncertainty. Behind the scenes, our research projects continue to make great progress and we remain at the forefront of technological advances which will help improve the quality of life of people living with MND. But for now, it’s vitally important that the MND family comes together to offer support and take care of each other. You’ll find links to all the latest advice on our website at www.mndassociation.org and on our social media channels.

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

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

Sally Light Chief Executive

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Let’s Act to Adapt and help everyone with MND A CAMPAIGN which calls on councils to improve the process of getting home adaptations and make moving to an accessible home easier will launch later this year.

The Act to Adapt campaign follows the publication of a report late last year which highlighted the problems people living with MND face when it comes to living independently and safely in their own homes. The report concluded that while many people living with MND want to adapt their homes, they face enormous challenges to do so – from the time it takes to go through the adaptations process to the high costs involved. “We were turned down because we both worked and were told to reapply when our circumstances changed.”

As a result, the Association will call on councils across England and Wales, and the Northern Ireland Housing Executive, to implement the recommendations set out in the Act to Adapt report and help make the process much easier for all those affected by MND. To support the campaign launch,

Ciara McDaid pictured with her husband Joe who died in 2015 and their sons

people living with MND have been sharing their experiences of the housing adaptations system. Ciara’s husband Joe was diagnosed

Have Your Say If you are living with or affected by MND with experience of moving to an accessible home or accessing home adaptations, you can contribute to the campaign launch by having your say now. If you don’t have personal experience of accessing home adaptations, we want you to have a say too. Whether you’re a campaign supporter, health and social care professional or politician/decision maker, simply share a message of support for the campaign. By sharing your message or experience, you will help raise awareness and inspire other supporters and decision makers to take action to help make home adaptations easier for people with MND. Have your say at www.mndassociation.org/haveyoursay

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with MND in 2014 and after returning home from hospital was forced to sleep in the kitchen surrounded by medical equipment. She explained: “We applied for financial aid to have building work done. We were turned down because we both worked and were told to reapply when our circumstances changed. As far as we were concerned, they had already changed dramatically, and we didn’t have time to wait!” Joe’s friends, family and colleagues started fundraising on the family’s behalf and the work was completed just before Easter 2015. But it was too late. Ciara said: “Seven months after diagnosis, Joe died. The whole process was shocking to me.”

ORONAVIRUS continues to be an obvious concern for people living with and affected by MND. Having taken advice from neurologists and specialists working in the Association’s care network, we are aware that people living with MND fall into the ‘high risk’ group. The Association’s priority is to do whatever it can to reduce the chances of spreading the virus. This wording to be updated in line with that on: www.mndassociation.org/mnd-and-coronavirus With that in mind all MND Association branch and group meetings, get togethers and all events between now and the end of April have been suspended, as have Association organised events. Staff and volunteers are using technology – phone calls, email, Facetime and Skype for example – to support people with MND and their carers rather

CORONAVIRUS

Taking action to protect those with MND

than meeting face to face. We are extremely disappointed to have had to take these steps – we know how important the support network is for people affected by MND. Our teams will be working hard to ensure that everyone who needs and wants support will continue to receive it. Other aspects of the Association’s work will continue as usual with the aim of keeping any impact on people affected by MND to a minimum. In the meantime, please follow the advice from the NHS and Government. If you are living with MND, or are a carer, please discuss any specific concerns you may have with your health and social care team. For all the latest news visit www.mndassociation. org/coronavirus; www.nhs.uk/conditions/ coronavirus-covid-19 or www.gov.uk

Making sure help is there when you need it

AKING sure that people living with MND can access the care and support they need during the coronavirus outbreak is of the utmost importance. With that in mind, the Association is utilising all its resources – both nationally and locally – to find out how it can best serve people affected by MND at this difficult and uncertain time. • Firstly, the Association will be looking at how the situation has impacted services. We will also be using the networks we already have in place to advise the MND community. • We will also be doing everything possible to make and maintain contact with all those

people living with MND that we know. This will help us to identify those at risk and the support they need. • We will continue to support people living with MND through practical and emotional support and offer more flexible ways of using grants. • We will also provide support to children and young people through a range of online resources. For the latest information about how the Association is supporting people living with MND during the coronavirus outbreak, visit www.mndassociation.org or call MND Connect on 0808 802 6262.

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Scrap 6 Months campaign discussed in Parliament

HE All-Party Parliamentary Group (APPG) on MND met in Parliament recently to discuss the Association’s Scrap 6 Months campaign on access to welfare benefits for people who are terminally ill. Becky Gatenby from Bradford gave an emotional speech about her father’s attempts to claim Universal Credit. Becky spoke to a packed room of MPs and Peers about her father, who is living with MND and how he had struggled with the welfare system. She finished her talk by reading out a comment on his behalf.

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

Becky Gatenby from Bradford who addressed the meeting to share her father’s experiences

He said: “It was degrading to feel that I had to beg for financial support from a system I had paid into most of my life. I felt abandoned and reduced to a number. The word terminal should be enough. It should not be about time as no-one can guarantee how long the terminally ill will live, regardless of the prognosis. The criteria for the terminally

ill needs to change before more people suffer at the hands of this system.” During the meeting, the following MPs were elected to serve as officers: Chair: Andrew Lewer MP (Conservative, Northampton South); Vice-Chairs: Brendan Clarke-Smith MP (Conservative, Bassetlaw), Chris Evans MP (Labour, Islwyn), Christine Jardine MP (Lib Dem, Edinburgh West) and Mark Tami MP (Labour, Alyn and Deeside); Secretary: Rosie Duffield (Labour, Canterbury). A record 28 MPs and Peers attended the meeting and The MND Association was appointed to act as the secretariat to the Group for another year.

We are incredibly grateful to all our supporters who emailed their MP about the meeting. A total of 1,300 people took our e-action – another record. “It was degrading to feel that I had to beg for financial support from a system I had paid into most of my life. I felt abandoned and reduced to a number. The word terminal should be enough.”

To read more about the APPG visit https://www.mndassociation.org/appg To read more about our Scrap 6 Months campaign visit www.mndassociation. org/scrap-six-months

Your chance to support Association’s summer raffle

F you would like the chance to win a cash prize while supporting people living with MND at the same time why not take part in the Association’s summer raffle. Our Christmas raffle raised more than £110,000 and with your support we can make the summer raffle even more successful. Every ticket sold in our summer raffle means that we can keep working to fund vital research as well as making sure that people with MND achieve the best quality of life possible, and no-one has to face MND alone. There is also the chance to win a top prize of £5,000. Tickets cost just £1 each. To be in with your chance of winning, please either return the stubs with your payment and completed reply slip in the Freepost envelope provided. Alternatively, you can enter online at www.raffleentry.org.uk/ mnda. Entry closes on Thursday 9 July, and the winner will be

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drawn a week later. 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.

Matthew shares his story for BBC Radio 4 Appeal

ROADCASTER Matthew Bannister shared his personal experience of motor neurone disease in an emotional appeal for the MND Association which was broadcast in March. Mr Bannister, a regular presenter on BBC Radio 4 and former controller of BBC Radio 1, recorded the Radio 4 Appeal at Old Broadcasting House in February. It was broadcast on Sunday 22 March and repeated on Thursday 26 March. “This may be the advance in treatment we’re hoping for, meaning families like mine have more precious time with their loved ones.”

Matthew Bannister pictured recording the BBC Radio 4 Appeal

Rugby legend continues support for families

During the appeal, Mr Bannister talked about his father, Neville, a keen scientist who died from MND in 2001, before sharing information about the pioneering work of Professor Nigel Leigh. Professor Leigh is currently leading a clinical trial, funded by the MND Association, which is looking at the possibility of repurposing a drug currently used in the treatment of cancer to slow the progression of MND. Mr Bannister said: “This may be the advance in treatment we’re hoping for, meaning families like mine have more precious time with their loved ones.” Listeners were asked to help fund Professor Leigh’s work with just £75 paying for half a day of research. For more information about how much the appeal has raised so far visit www.mndassociation.org/radio4

Wheelchaircars.co.uk

ORE than 1,000 people affected by MND have been directly helped by grants funded by a foundation set up by rugby legend Doddie Weir. Doddie, who is living with MND, created the My Name’5 Doddie Foundation after being diagnosed with the disease in 2017. Since then he has been committed to doing everything possible to help people living with MND and has generously supported the Association’s care grants programme over the past three years. In total, the foundation has donated £400,000. Doddie said: “We are delighted to know that we have been able to help so many families. There are many challenges to living with MND and it has been my aim to help people in a similar situation to myself live as full a life as possible. The grant schemes are vital, and we are only able to help in this way thanks to the amazing support we receive from our fundraisers and friends every day.” People with MND can apply to the Association for care grants to help with the cost of home adaptations – for instance ramps and stairlifts; equipment such as specialist bathroom facilities and riser recliner chairs; and for respite activities for carers and families. The MND Association’s care grants programme totals more than £1 million annually and, in 2019, helped 1,425 people living with MND, carers and young people affected by the disease.

FREE NO OBLIGATION HOME DEMONSTRATIONS USED VEHICLES FROM £2995

Tel: 0161 793 5934 Full details on our website, www.wheelchaircars.co.uk

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Helping our rese H

ELPING all MND researchers keep in touch with the wider MND community is one of our aims following the coronavirus outbreak. With all events now being cancelled, the Association is looking at other ways

The MND Association’s MND Community Research Advisory Network

HE development of the Association’s MND Community Research Advisory Network offers a unique opportunity for people living with and affected by MND to work closely with researchers and healthcare professionals to ensure the research information they are offered is relevant and useful. The aim for the network is for members to: • Advise on their engagement preferences • Review the way in which we disseminate research information via our website, information sheets and newsletters • Identify gaps in our information • Help to develop a series of resources on topics they would like to know more about, for example clinical trials, genetics or stem cells. These will be delivered by researchers from that field of investigation via webinars, podcasts and meetings.

As the group develops it is hoped it will also become involved in policymaking, research grants and help to shape our research strategy. Members will be able to join focus groups working on the topics they are most interested in and can take part as often or as little as they like. Details of how to sign up to the network will be available on our website soon.

www.mndassociation.org

to help researchers share their work with people living with MND. Over the coming months, the Association hopes to be able to share blog posts and videos from researchers on our own blog which will help people living with

MND keep up to date with the latest developments. To read up-to-date information on the Research Development team’s activities, events, and exciting news on MND research, please visit mndresearch.blog

searchers grow Association’s support is a catalyst for growth in MND research

TTRACTING, training and the leading MND scientists of the future is one of the Association’s biggest priorities. The Association’s Lady

Edith Wolfson Fellowship Programme aims to develop the careers of outstanding young clinical and nonclinical researchers in order to create future leaders in MND research. It has been running for more than a decade thanks to the ongoing generosity and vision of a supporter who wishes to ensure that high quality scientists are attracted, trained and retained in the fight against MND. To date, 16 Clinical Fellowships and 11 Non-Clinical Fellowships have been awarded. The Association partners with the Medical Research Council (MRC) at three career stages from Clinical Research Training Fellowships, which support young clinicians to embark on a PhD, through to Senior Clinical Fellowships where experienced clinicians lead their own research teams and programmes. This year, Dr Alex Thompson from the University of Oxford has been awarded a Lady Edith Wolfson Clinician Scientist Fellowship. This Fellowship aims to support clinicians wishing to pursue research into the pathogenesis and treatment of MND. The five-year project called Identifying the early biochemical signature of ALS will start during the Spring. Dr Thompson said: “The project aims to study people carrying genetic alterations that predispose to MND in the years before symptoms begin. “By measuring the levels of thousands of proteins in cerebrospinal fluid – the fluid closest to the cells affected by MND – I aim to detect MND-related changes occurring in the nervous system long before the start of MND symptoms. “I hope to shed light on the mechanisms that lead to the development of MND, paving the way for new therapies, and develop ways of predicting when MND will begin in order to allow earlier treatment of MND – even before symptoms develop.”

Dr Alex Thompson pictured with Professor Kevin Talbot and Professor Martin Turner

Professor Martin Turner from the University of Oxford said: “The MND Association’s pioneering support for clinician scientists over more than a decade through the Lady Edith Wolfson Fellowships has catalysed the international growth in MND research. “Oxford is very lucky to have been able to nurture someone with Dr Thompson’s talent all the way from medical school to consultant neurologist and MND-focused biochemical scientist. His groundbreaking research on biomarkers will significantly advance our understanding of the disease and his addition to our wider multi-disciplinary clinic team ensures our care centre will continue to offer regular support for those living with MND.” This is the third major Clinical Fellowship awarded in the past 12 months through the programme, following Senior Clinical Fellowship awards to Dr Rickie Patani and Dr Pietro Fratta from University College London. Collectively, these three awards represent more than £4.52 million in new MND research investment, of which MND Association has committed £525,000. This equates to about £7.60 from MRC for every £1 contributed by the Association. To read more on our fellows, please visit www.mndassociation.org/our-fellows. www.mndassociation.org

Taking a closer look at clinical studies

EOPLE living with MND and their carers are being invited to get involved with a new group which is focussing on clinical studies. The UK Motor Neurone Disease Clinical Studies Group (UK MND CSG) was set up to bring together expertise and enthusiasm to develop both the quality of MND research and the number of research studies which are available for people living with MND to participate in nationally. “It is an opportunity to not only have an input into those discussions, but also to have ‘an ear to the ground’ with what’s happening, and to then communicate developments and disseminate information through our usual channels.”

The group currently has 36 members including MND neurologists, palliative care specialists, patient and carer representatives and other healthcare professionals with an interest in MND clinical research. Among them are the Association’s Director of Research Development, Dr Brian Dickie, and Head of Research, Dr Nick Cole. Dr Cole said: “It is an honour to be a member of the CSG. “It gives a co-ordinated approach to

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future and on-going clinical studies and a point of focus for discussion. It is an opportunity to not only have an input into those discussions, but also to have ‘an ear to the ground’ with what’s happening, and to then communicate developments and disseminate information through our usual channels.” All members are invited to attend monthly teleconferences and an annual face-to-face event to stay regularly informed about the status of clinical research across the UK. The CSG discusses current research activities and their performance, funding opportunities, and new research projects that members can get involved in. As well as this, the group assists with prioritising and developing the overall portfolio of clinical studies supported by the National Institute for Health Research (NIHR). Members provide local leadership to the research network by increasing collaboration with specialist MND care centres across the UK to integrate highquality research and patient care. By doing this, new studies are brought to the clinical environment in an effective and timely manner. The UK MND CSG seeks to involve patients and carers in all aspects of

their work and appreciates input from those who are affected by MND into the development, management and reporting of clinical studies while assisting with the prioritisation of the overall portfolio of clinical studies. If you would like to join the group as a lay member, you can get in touch by emailing info.ukmndcsg@sheffield.ac.uk.

For more information about the UK MND CSG, visit www.mndcsg.org.uk. Here you can find out about all MND clinical research studies across the UK, in a patient-friendly and accessible format. If you would like to know more about the research that the Association is currently involved in, you can download our recently updated Information Sheet E: Research we fund 2020 from www.mndassociation.org.

Richard Coleman, chair of the Board of Trustees

Offering our help and support in difficult times A

S the coronavirus crisis continues to unfold, the Association is as determined as ever to make sure people living with and affected by MND have the care and support they need. As coronavirus is a new illness, information from Government and guidance for the public is emerging and changing constantly. Our website – www.mndassociation.org – is being updated regularly to provide you with the latest information as the situation progresses. As you will know, all MND Association branch and group meetings, get-togethers and social events between now and the end of May have been cancelled as have the Association’s regional focus events. The Association is currently working hard

to find ways in which branches and groups can continue to meet online. We have decided to cancel trustee elections for 2020 and our Annual Conference and AGM which is due to be held in July has now been postponed. Over the next few weeks we will decide whether or not it will be possible to rearrange this for a date later in the year and we will bring you the latest news on that in the summer edition of Thumb Print. In the meantime, please be reassured that our staff and volunteers are doing everything they can to support people living with MND at this very difficult and unprecedented time. Please stay at home and stay safe.

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yourstories

â€˜The power of their relationship has created wavesâ€™ Alan and Hazel pictured on their wedding day

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yourstories

HEN Alan Carter died from MND in June last year his business partner and closest friend Simon Beacham pledged to make one final dream come true. For many years, Simon and Alan, who set-up their business ABC Solutions (UK) Ltd together, had dreamed of trekking to Everest Base Camp. After Alan was diagnosed with MND in 2017, Simon was determined to raise money for the MND Association and told Alan about his plans. “I’ve been overwhelmed by the incredible support, encouragement and kindness shown in support of my fundraising efforts, which exceeded my original target.”

Sadly, Alan died before the trek took place, but Simon was determined to make sure he shared the experience by taking a cask of Alan’s ashes with him. He laid them to rest at the memorial cairns in the Himalayan Mountains at Chukla Lare. Simon said: “The trek was a challenge, my favourite word, but gave me a life experience and memory. The mountain ranges, rivers, wildlife and skies were of a scale I had never seen before, it’s a mountaineer’s dream on a large scale. “It is something we should all look to achieve during our time on this fabulous planet.” After raising an incredible £7,250, Simon said: “I’ve been overwhelmed by the incredible support, encouragement and kindness shown in support of my fundraising efforts, which exceeded my original target.” Alan’s wife Hazel said Simon had been an important part of both their lives and that she was ‘humbled’ by his achievement. She said: “Alan and Simon had known each other for more than 20 years. He was there throughout Alan’s journey with MND and was there with me when Alan died. “Simon was determined to raise as much money as possible and has motivated lots of other people to do the same. “When Simon told me about the trek, I was moved that he

Alan and Simon had been close friends for many years

Simon Beecham makes it to the Everest Base Camp

wanted to take some of Alan’s ashes with him. In addition to the ashes I gave Simon the neckerchief Alan always wore when he went skiing. “I also made sure I was there at Heathrow Airport to wave Simon off. I told Simon’s wife that I would be there but he had no idea. It was an emotionally-charged moment when Simon saw me – I wouldn’t have missed it for the world. The power of Simon and Alan’s relationship has created waves and is humbling.” Hazel now hopes to use her experience to support other people who have been affected by MND. She said: “Alan was always very positive and he had lots of motivational sayings. One of his favourites was, ‘Life is good, it’s the disease that’s the problem.’ “Throughout Alan’s journey with MND I kept a journal and made several videos. These could help families who are going through similar experiences, so I am creating Alan’s biography. The book will also help educate professionals caring for those with MND. MND and I are now inextricably linked and I want to do everything I can to help raise awareness.” To follow in Simon’s footsteps and find out more about trekking to Everest Base Camp for #TeamMND visit www. mndassociation.org/mnd-event/everest-base-camp-trek www.mndassociation.org

Making technology work for

www.mndassociation.org

people living with MND

ESS than a year since its launch, the MND Association’s Next Generation Think Tank has produced its first prototype with work now underway to share the technological breakthrough with people with MND. Using AI (artificial intelligence), Quips offers the next step in communication aids, which many people with MND use after losing the ability to speak. The software was developed by a team of experts led by Rolls-Royce and including representatives from global giants including Accenture, Dell Technologies, Intel and Microsoft. “Technology that allows people to retain those things that make them unique – their voice, speech patterns, intonations and word choices – is a huge leap forward in enabling someone to retain their dignity and sense of self.”

Quips gives people who are unable to speak, the ability to have a conversation through a computer using their own voice, words, colloquialisms and accent, without pausing to type answers or being restricted to a prescribed set of words. It uses voice-banking and AI to learn a person’s unique language style then listens to speech and suggests responses based on previous conversations. It is hoped that Quips will also be made available as a free plug-in to existing packages. Nick Goldup, Director of Care Improvement for the MND Association, said: “This technology will allow people with MND to communicate closer to ‘real time’ than ever before. “Technology that allows people to retain those things that make them unique – their voice, speech patterns, intonations and word choices – is a huge leap forward in enabling someone to retain their dignity and sense of self. It is important to point out that this is still at the concept stage, however we are optimistic that the project will continue through the implementation stages during 2020.” In addition, the MND Association is supporting a Google initiative - Project Euphonia – which is training voice activated technology to recognise and translate dysarthric, or slurred, speech at the same speed as it is spoken. It then displays the words on a screen – for example a smartphone or tablet. Around a quarter of homes now have a voice activated assistant such as Alexa, Siri or Google Assistant. But this technology has been pointless for people whose speech has been affected by MND – until now. It is hoped that Project Euphonia will enable people whose speech has been affected by MND to continue to communicate in their own voice for longer. It will also give them the ability to operate equipment around their home including lighting, the TV or phone. A range of dysarthric speech is being recorded to help ‘train’ Google Assistant – to date 40 people living with MND have participated. For more information about how you could get involved visit g.co/euphonia

Kaysa Dattani, who is living with MND, and is involved in Project Euphonia

In the coming months, Channel 4 will broadcast a documentary called The Human Guinea Pig, following the Association’s former trustee Dr Peter Scott Morgan as he explored how medical interventions and cutting-edge technology can help him live with MND.

So what’s next? The Think Tank – and the relationships being created through it – are making all sorts of things possible: Dell has donated 50 laptops to the MND Association to be loaned to people with MND to bank their voice for future use with communication aids. A video team from ComputaCenter has offered to create training videos for health and social care professionals and people with MND to help them voice bank autonomously. Some Think Tank members are designing a new way for people to use eyegaze that can be used in sunlight, unlike current systems. Nick Goldup has been asked to set up an international innovation and technology group through the International Alliance of ALS/MND.

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Amelie and Olivia have Hi there buddies! My name is Ali the Alligator and I’m very excited to be appearing in Thumb Print. What have you all been up to? My wonderful friends Amelie and Olivia have been very busy indeed! They have decided to help raise money for the MND Association by baking the most amazing cakes and selling them to their family and friends! How amazing is that? Cakes are one of my very favourite things – yummy! The MND Buddies and I have been busy meeting lots of new friends over on our activity hub which you can find online at www.mndbuddies.org. If you like reading, drawing and colouring you’ll find lots of fantastic things to do there – just make sure you check it’s OK with your grown-up before you visit. Don’t forget you can send your stories, pictures and letters to our lovely friend Clare who puts this magazine together for your grown-up. You can find out more about how to get in touch on the next page. See you all next time! Ali x

Meet my other buddies

Carly the cat Rini the Rabbit

Max the Monkey

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Eric the Elephant

the recipe for success! Hello!

I am Amelie, I am ten and this is my sister, Olivia who is seven. “We are so excited to be in Thumb Print as we had a great idea to sell cakes to our friends and family to raise money for the MND Association. “Our Mamgu (Welsh for Grandma) was the best, we had so much fun with her. She used to come on days out, pick us up from school, take us to Caerphilly Castle for an ice cream and loads more! But one day, Mamgu became very poorly, she spoke funny, she fell over a few times and walking was hard for her, then she couldn’t breathe properly. She was in hospital a lot. We drew her pictures which she kept at her bedside – they made her smile. Then Mamgu died, we were so sad and cried a lot. We miss her so much. Mummy told us that after Mamgu went to heaven, the doctors found out she had a disease called motor neurone disease. We don’t know much about it, but we know it’s what she had and it’s really not nice. Mamgu loved having cakes with us so we decided to sell cakes to our friends! We have made more than £300 and know Mamgu would be so proud of us. We are already planning to make some more!

More about us!

Name: Amelie Age: Ten Favourite subject at school: Literacy Favourite food: Lasagne Favourite Movie: Jumanji: The Next Level Favourite book: Harry Potter: The Chamber of Secrets Favourite pop stars: Little Mix What would you like to be when you grow up: A teacher

Name: Olivia Age: Seven Favourite subject at school: Art Favourite food: Ice cream Movie: The Polar Express Favourite book: Fairytale books Favourite pop star: Ariana Grande What would you like to be when you grow up: A vet

Why not give Amelie and Olivia’s cupcake recipe a try? For the cakes: 110g margarine 110g caster sugar 110g self-raising flour 1 tsp baking powder 3 free-range eggs For the icing: 200g of icing sugar mixed with water until smooth and not too runny. Whisk the margarine and sugar until light and fluffy. Whisk in one egg at a time, then fold in the flour with a metal spoon, a little at a time until fully combined. Spoon the mixture into cupcake cases and bake in the oven at 180° until golden. Cool on a tray. Spread the icing on top of the cakes add lots of blue and orange sprinkles and enjoy! Don’t forget to send us a photograph of your yummy cakes!

If you’ve been inspired by Amelia and Olivia why not hold your own virtual bakeit! cake sale? Ask your grown-up to sign up by visiting www.mndassociation.org/bakeit. We’ll send you a free fundraising pack which includes everything you need for your event, from top tips to raise extra money to how to make your own cupcake flags.

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

Fighting back through W

HEN Dougie and Judith Scarfe lost their best friend Tim Lester to motor neurone disease ten years ago, they decided they had to do something to support the work of the Association and raise awareness of MND at the same time. Inspired by the close friendship they shared with Tim and his wife, Christine, the couple wanted to celebrate Tim’s life and challenged themselves to take part in 12 half marathons each during the year in places that held special significance to Tim and his family. Their poignant, and often emotional journey, started in January 2019 at the Bovington Tank Museum in Dorset and over the past 12 months has taken them to Scotland, Connemara in the West of Ireland, The Lake District, Cambridge, Ilkley and Newcastle, where they took part in the Great North Run. While the challenge has been tough, the couple has since been inspired to push themselves even further, increasing the number of events they are taking part in to 16. “He had wonderful support from the MND Association and MND Scotland as Tim had a home there at the time, but seeing him having to cope with MND was terrible, we all felt completely helpless.”

Judith Scarfe

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Dougie explained: “The four of us were bonded together by a love of rugby, horse-riding, good food and good wine. Christine, Tim and their son Alex were our very closest friends. “Tim was diagnosed with MND in 2006 although there had been signs that something wasn’t right for quite some time. As everyone knows life becomes dominated with the challenges of access, lifts and hoists. He had wonderful support from the MND Association, and MND Scotland as Tim had a home there at the time, but seeing him having to cope with MND was terrible, we all felt completely helpless.” Dougie and Judith have been raising funds for the Association through running half marathons and marathons since 2007 while Tim was still living with MND. Dougie said: “We wanted to do something to help raise money and raise awareness of this truly devastating disease. We recently joined Run MND on Facebook and they have been amazing and so inspiring. The sense of community and passion is just incredible.” In October, Judith and Dougie took part in the Dramathon – a half-marathon along the Speyside Way from the Tamdhu Distillery to Glenfiddich, a route they had walked many times with Christine and Tim. Their final four events took them to Richmond Park, Silverstone race track in Northamptonshire, Lanzarote and Portsmouth. Dougie said: “It has been the most extraordinary and special year, running in places that help us celebrate Tim’s life,

h music and friendship

transformative. Embracing the small every day thing that over our love for him and also meeting many wonderful people time lead to systemic change has brought us closer to the who share our passion that there is no finish line till there is a society which we are here to represent and whose lives we cure. We are so proud that since Tim was diagnosed, we have enrich through music. It has changed the way we look at our managed to raise almost £13,000 for the Association.” Company, our art, our audience and our role in the world. It The last few months have been an extremely busy time is the most exciting and rewarding thing for Dougie, who is Chief Executive of imaginable to lead such change.” the Bournemouth Symphony Orchestra BSO Resound made its debut at the (BSO). 2018 BBC Proms and has recently been In October, Dougie marked the nominated for two awards from the Royal first anniversary of BSO Resound – a Philharmonic Society. professional ensemble at the heart of Dougie also admits that Tim’s the orchestra which is completely led experience of living with MND has been by disabled musicians, including its at the forefront of his mind throughout conductor, James Rose who is living with the ensemble’s development. cerebral palsy. He said: “Tim loved coming to concerts The ensemble has been created to and we make all of them accessible to inspire musicians to focus on what those who perhaps would not be able to they can do, rather on what they can’t go to a traditional concert. It’s something and demonstrates perfectly just how that is very close to my heart.” powerful music can be in bringing To find out more about BSO Resound people together and influencing change. Dougie Scarfe, who is the Chief Executive of the and the Bournemouth Symphony Dougie said: “Putting inclusion at Bournemouth Symphony Orchestra, pictured with friend, Orchestra visit www.bsolive.com. the heart of the orchestra has been Tim Lester who died from MND www.mndassociation.org

Top tips for taking you

Andy Laird is pictured with his daughter Becky (left) and wife Ann

IKE countless organisations across the world, the coronavirus pandemic is creating serious challenges for the Association, not least in raising money to fund our work. With mass fundraising events being cancelled or postponed – from the 40,000 participant Virgin Money London Marathon to small coffee mornings in the local church hall – times are hard for everyone. “I’m doing this because the MND Association’s income from fundraising will be drastically reduced as a consequence of the coronavirus.”

Our supporters are more determined than ever to keep on fundraising and we are so grateful to everyone who has continued to support our work by coming up with fundraising activities which have no social contact but all the fun.

www.mndassociation.org

Andy Laird was motivated by the coronavirus crisis to challenge himself to a virtual race to raise funds for the MND Association. The 64-year-old Methodist Minister, who is living with MND, will walk up to 10,000 steps around his house and garden and cycle for up to 1.5km on his exercise bike in one day, while in self isolation. He said: “As a consequence of MND my hands don’t work properly, and walking has come to be very hard work. It therefore might seem crazy for me to try to undertake a sponsored walk to raise money for the MND Association when I’m normally wrecked after walking 200 yards. “I’m doing this because the MND Association’s income from fundraising will be drastically reduced as a consequence of the coronavirus. And it needs every penny it can get if it is to continue to support me and others with this horrible killer disease.”

Here are some of our favourite ideas which you might like to try at home: Virtual race Although many traditional events can’t take place, you can still run your own solo race. Sign up for our virtual race and run either a half marathon, full marathon or choose your own distance. Complete your distance either on one day or over a whole month and record it using a tracking app or device. It’s completely free to sign up and if you raise over £50 in sponsorship we’ll send you a limited edition medal. With schools across the UK now closed, you could encourage your children to join in too. They’ll love the medal and it’s a great way to ensure they get some exercise while they are missingout on PE lessons. How about challenging them to cover 1k every day, even if it’s running up and down the garden? Visit mndassociation.org/virtual to sign up.

ur fundraising inside Silence Speaks Our very own fundraiser, Silence Speaks, is about finding new ways to communicate; something we’re all learning about in these challenging times. Lose your voice to help others be heard in return for sponsorship.

Birthday bonanza Big birthday parties might be out of the question, but how about using your birthday to do some good? Ask for donations instead of birthday presents, or even donate the cost of a birthday drink. If you use Facebook it’s really easy to set up an online birthday fundraiser and share it with your friends. Bake off Your usual coffee morning or bake sale might be off limits, but you can still share online coffee and cakes with your friends and family. Arrange a time to get together virtually over a cuppa and a slice of cake and donate the money you would have spent. Bring the food technology lessons home and get your kids in the kitchen. Share photos of their best and most creative bakes online – surely that’s worth a donation or two!

If you’re a parent trying to get to grips with home-schooling, Silence Speaks could be your saviour - especially useful for avoiding interruptions during work conference calls! Visit mndassociation. org/SilenceSpeaks

Hair today, gone tomorrow With limited social interactions, it’s the perfect time to experiment with growing that moustache or trying out the shaved head look. Especially if you can’t get to the hairdressers or barbers!

Have a clear out It’s the perfect time to spring clean your wardrobe and cupboards and have a good old clear out! Sell your unwanted items online, or even host your own live online auction, and donate the proceeds to support people affected by MND. Ask your children to find three old games or toys they no longer play with to sell. Tell them how the money they raise will help families affected by MND and how another child will get to enjoy their old toys.

Anything you like – athon Skip-a-thon, dance-a-thon, game-athon, bake-a-thon, climb-a-thon. Get sponsored to complete a chosen activity for a set number of hours. Share your fundraising online and post regular updates. Even in isolation, the possibilities are endless.

Virtual quiz Host a virtual quiz live on Facebook or Instagram or even set up a group using conference technology like Zoom. Ask quizzers to donate to take part and join the fun. You can even send the winners - and losers - a prize in the post. Why not make it a weekly session?

Mount Stair-don Could you climb the height of Mount Snowdon – on your own staircase? Climb your stairs at home 475 times to complete the challenge! Don’t forget to set up and share an online donation page. Complete the challenge as a family relay over a number of days. You could even challenge other families to see who can complete the challenge first and share your progress online. Get musical If you play an instrument or can sing, why not spread the cheer and host a virtual concert? You could ask for people to donate in return for playing their requests. Or perhaps if your skills aren’t up to scratch, they will donate for you to stop! Lots of young kids love to perform. Film them doing their stuff, whether it’s singing, playing an instrument or a full-on sibling rock band, and share the video with friends and family. Ask them to donate online as a thank you for brightening up their day. Making the most of technology We need to utilise technology more than ever with face-to-face contact discouraged, or impossible. Swap your cash collections for online donations, for example by setting up JustGiving (justgiving.com), Virgin Money Giving (virginmoneygiving.com) or Facebook (facebook.com/donate) donation pages. Group video calls mean lots of traditional fundraising ideas can move online. They can be just as fun, just different. Apps like Facebook Messenger, WhatsApp, Zoom, Skype and Google Hangout allow multiple users to join video calls. Get in touch For a fundraising pack and to tell us about your fundraising visit www. mndassociation.org/fundraiseyourway, email fundraising@mndassociation.org or call us on 01604 611860. www.mndassociation.org

Representatives from the Northern Ireland Branch and Derry City and Strabane District Council pictured as the Association’s MND Charter is formally adopted

Number of charter adoptions nears 100

WO more councils in Northern Ireland have become the latest to adopt the Association’s MND Charter. The Charter – a five-point plan which sets out what good care for people living with MND looks like – was launched in 2012 and has since been signed by more than 30,000 individuals, health boards, clinical commissioning groups and health and wellbeing boards. “After a year of nothing happening, I enlisted my local councillors and the MND Charter was approved. I am proud of our persistence and we will continue until the council agrees to formally adopt the charter. It’s important to remember that campaigning success takes time and doesn’t happen overnight.”

The Northern Ireland Branch has been working so hard to encourage all 11 councils to adopt the MND Charter. Thanks to the work of Stephen Thompson, Marie Holmes, Colm Davis, Fiona Kane and Mary Boyle eight councils have now signed up. In Lewisham, Association trustee Andy Cawdell, who is living with MND, has

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been campaigning to get Lewisham Borough Council to get on board. He explained: “Having realised the borough had not adopted the MND Charter, I contacted a colleague from the Association’s South London Branch and used my contact at the local Labour Party, which controls Lewisham Borough Council, to find out which senior officer was responsible. She referred me to the relevant council cabinet member, and I sent them material provided by the Association’s campaigns team to try and persuade them. After a year of nothing happening, I enlisted my local councillors and the MND Charter was approved. I am proud of our persistence and we will continue until the council agrees to formally adopt the Charter. It’s important to remember that campaigning success takes time and doesn’t happen overnight. We also look forward to working with Lewisham Borough Council on Act to Adapt, a campaign which aims to get councils to improve access to accessible housing and adaptations for people with MND.” At the time of going to press, 94 councils had adopted the Charter. For more information visit www.mndassociation.org/mndcharter.

Remembering the vital role our carers play

AKING caring visible will be the theme of Carers Week 2020 which will be held in June. The event, which is being supported by the Association, aims to celebrate the often-overlooked contribution of the UK’s carers, raise the profile of the carers role and highlight the challenges they face. As Thumb Print went to press, the UK entered a period of social isolation due to coronavirus. Plans are being developed to try and make sure that Carers Week and its activities can still operate virtually. That means finding ways to deliver: • Messaging to MPs • Activities for carers Carers Week will happen this year, just in a different way. Please keep an eye on the Carers Week websiteat www.carersweek.org for the latest information about how to get involved.

Have you #MNDRegisteredYet?

N February, the Association launched a new social media campaign - #MNDRegisteredYet? – to give people living with MND more information about the register, which is a joint research project between King’s College London and the University of Oxford. The aim of the project is to help researchers learn more about the disease and how it develops, identify possible trends and plan care services for people living with MND. Preliminary data from tshe first 655 people who joined the register shows that weakness in the limbs is usually one of the first symptoms to appear and that the average age of diagnosis is 63. The data also shows that men are more likely to be affected. To date, more than 2,000 people living with MND have joined the MND Register of England, Wales and Northern Ireland, making it one of the biggest MND registers in Europe. If you would like to sign the register visit www.mndregister. ac.uk – you can also find more information at www.mndassociation.org/mnd-register We are grateful for the support of the Betty Messenger Charitable Foundation and a family trust which wishes to remain anonymous for enabling the Association to fund this important project.

Richard Webb and Dianne Hepburn are pictured with Justin Tomlinson at the Carers Week Parliamentary event in 2019

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

How to join the MND Register

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

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

www.mndassociation.org

Take the time to talk

else in the same building to help.” Others with MND have consistently said that awareness is important, with one person Telling people about MND saying: “My husband found it helpful to Conversations with family, children friends and professionals tell people as soon as possible about his diagnosis. Reaction was mixed, but it allowed people to talk about it.” Raising awareness of needs also means regular conversations with supporting professionals. If MND affects speech and communication, communication aids may help – or an advocate, where a family “My husband found it helpful to tell member, friend or professional speaks on the people as soon as possible about his person’s behalf. diagnosis. Reaction was mixed, but it The booklet, which has been produced allowed people to talk about it.” in response to feedback from our members, includes helpful suggestions about how to start the People react to the news in different ways and this is not conversation. always predictable. One of our reviewers told us: “A particular You can download sheet 10B from the Information sheets reaction always stuck with me. I phoned a colleague, who was option at: www.mndassociation.org/careinfo or order a printed a hard-nosed salesman like me. The sort of guy you might cross copy through our MND Connect helpline: 0808 802 6262 or the street to avoid – a tough guy. However, when I told him I mndconnect@mndassociation.org heard the phone drop and him crying. I had to phone someone ECEIVING a diagnosis of MND raises many challenges, not least how to tell loved ones what’s happening. Opening these conversations can feel difficult and upsetting, but the sooner others know, the better someone’s needs can be understood. To help support people living with MND when it comes to having these important discussions, the Association has produced a small guide called Telling people about MND.

Share your experience of dental care

EOPLE living with MND are being asked for their feedback on the care and treatment they receive from their dentist. Deborah Manger, who is a specialist in Special Care Dentistry and a member of a clinical network that aims to

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improve the delivery of specialist dental services, would like to hear from people about their experiences to ensure patients receive the right care at the right time. If you are interested in taking part you can access a very short survey at www.surveymonkey.com/r/Q593N9G

Care information updates When someone close has MND – workbook for children aged four to 10: This successful workbook has been updated, including new imagery to match our storybook for children Why are things changing? which provides a first introduction. The same characters now appear in the revised workbook for familiarity, and tackle some of the more sensitive aspects about the disease through information and activities. The workbook can help open conversations about MND in an age-appropriate way and adults can share pages at a pace that feels right for each child. Telling people about MND: Our new compact guide on how to tell others about your diagnosis and ongoing needs with MND. It looks at the emotional impact of this and also how someone can act as an advocate on your behalf.

Emotional and psychological support - for people with and affected by motor neurone disease (MND): Our new compact guide to help with the emotional impact of an MND diagnosis. It includes guidance on the type of counselling therapies that may be available. This replaces information sheet 9C. Changes to thinking and behaviour – for people with motor neurone disease (MND): Our new compact guide about changes to thinking and behaviour that some people with MND may experience. It includes guidance for the person with MND and their carers. This replaces information sheets 9A and 9B.

Due to the coronavirus pandemic, work to update the following booklets and information sheets has been delayed. More updates will be available in the summer edition of Thumb Print.

See our resources at: www.mndassociation.org/information

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

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.

http://forum.mndassociation.org/forum.php

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‘I’m determined to show people what’s possible, even though I have MND’ 26

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RIENDS and former colleagues Phil Rossall and Marcus Green broke the Guinness World Record for the full marathon wheelchair push at the iconic Goodwood Motor Circuit in December. Phil, who is living with MND, was pushed around the 26.2-mile circuit in under three hours by Marcus, smashing the previous world record. The main reason for the run was to promote Phil’s book about living with MND called Motor neurone disease the fun bits, which is based on his blog of the same name. Phil was diagnosed with MND in 2016 and despite being unable to move his limbs or breathe for himself, he is determined to help raise awareness and much-needed funds. Before taking on the world record for the full marathon, the duo completed a half marathon event in Worthing in one hour 29 minutes and 38 seconds – six minutes faster than the previous record. “Running the marathon was also designed to highlight the good work done by the MND Association and to show that you are never too ill to do something amazing.”

Phil and Marcus are pictured celebrating breaking the world record for the full marathon wheelchair push

Phil explained: “I try to see the funny side of everything, even though I have advanced MND. I am determined to show people what’s possible. “I used to be an active runner and have completed five full marathons and numerous other long-distance races. Now the best I can do is sit in the chair while being pushed. Before the world record attempts with Marcus, I was pushed in the Great South Run by the fantastic Run MND team. “Running the marathon was also designed to highlight the good work done by the MND Association and to show that you are never too ill to do something amazing.” Marcus, an accomplished marathon runner, said the world record attempt attracted a lot of attention in the local media. He explained: “On the day there were lots of reporters there which was motivating in itself. We knew there was no option but to do it! “Phil and I have always been incredibly ambitious, and he felt the world record was attainable.” Since being diagnosed with MND, Phil has raised nearly £30,000 for the Association. Director of External Affairs, Chris James said: “Without incredible support like this from Phil and Marcus, the MND Association simply would not be able to fund research to find a cure, campaign and raise awareness of MND and provide its vital support services to those living with and affected by the disease. We are so grateful for everything they have done to support us.” Phil’s book – which is available to buy from Amazon - talks about his journey with MND. He said: “It’s an example of what can be achieved by someone in their fourth year post diagnosis. But most of all it’s a good laugh and cathartic for people with MND, friends and carers. All royalties will be passed on to the Association.” www.mndassociation.org

Cyclist raises £15,000 on 143-mile journey

KEEN cyclist who battled breast cancer and was later diagnosed with MND, has taken part in a 143-mile cycle challenge to raise money for the Association. Jane Bryant rode from Birmingham to London along the route of the Grand Union Canal in October alongside her husband Chris and friends Jacqui and Laurence Fromberg and raised more than £15,000. Having beaten breast cancer in 2014, Jane said that being diagnosed with MND was a far bigger blow. She said: “It was much worse because I was told there was no treatment and no cure and that was much harder to accept. The blessing is that I have been told it is progressing slowly, but it is affecting my legs. “I am having difficulty walking but I still play tennis, I just have to rest regularly. I am still able to ride a bicycle and I felt compelled to challenge myself as well as raise much-needed funds for research

Jane Bryant, her husband Chris and friends Jacqui and Laurence Fromberg at the end of their challenge

into this crippling and cruel disease.” Jane said one of the biggest challenges the group faced was the fear of falling into the canal as well as having to navigate canal paths covered

Association visitor launches new children’s book

Jill Anderson, pictured with her new book

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in crab apples. She said: “I was delighted to complete the challenge and I was overwhelmed by the generosity and messages of support from friends and family.”

SSOCIATION visitor Jill Anderson has written a new book for children aged between four and

eight. Called Alfie Doodle, the book tells the story of a boy who gets into trouble for constantly doodling at school, however his doodles take him on amazing adventures and his teachers are astounded at the results. Jill says: “I was always doodling at school which used to annoy my teachers - unfortunately I didn’t have the magical adventures like Alfie! I started writing the book while I was still working at my local infant school a few years ago and I’m so pleased to have finally completed it and be able to raise more funds and awareness to fight MND because of it.” Jill became an Association Visitor with the East Sussex Branch for the Brighton area after her mum was diagnosed with MND. As well as being an Association visitor, Jill also fundraises and has so far raised £4,000. Alfie Doodle is available to buy from Amazon £1 from each sale goes to the Association.

A generous donation in memory of Anne

ONEY raised by pigeon fanciers across the UK has been used to purchase ten iPads which will be lent to people living with MND. The Royal Pigeon Racing Association decided to donate money to the Association after being approached by Phil Howitt, whose wife died from MND in 2018, just 18 months after being diagnosed. “It’s a lovely legacy for Anne and is such a useful aid for MND patients, provided by the generosity of pigeon fanciers throughout the UK.”

Phil said that both he and Anne had been ‘humbled’ by the levels of help, advice and support given to them by the Association and Marie Curie West Midlands and approached The Royal Pigeon Association at the suggestion of his friend Dave Trippett, who has connections with the organisation. Dave worked with Phil and Anne at the British Steel Corporation during the 70s and 80s and they became close friends. Phil explained: “I contacted the MND Association to see how the money

Anne Howitt, pictured with her husband Phil and their sons

could be spent and one suggestion was to buy iPads which could be programmed with software to enable patients to communicate with their loved ones. Anne had experienced difficulty communicating as her speech deteriorated which was very frustrating for her. “Dave put the case forward to the Royal Pigeon Association’s committee

and their response was to donate enough money to purchase ten iPads. Each of them is engraved with the words, ‘Presented in memory of Anne Howitt by the Royal Pigeon Racing Association.’ “It’s a lovely legacy for Anne and is such a useful aid for MND patients, provided by the generosity of pigeon fanciers throughout the UK.”

Malcolm banks on his colleagues’ support

TAFF at Investec Bank have organised raffles, quiz nights, cycles and cake bakes to help raise more than £100,000 for the MND Association. In May 2018, employee Charles Malcolm, who is living with MND, asked

Investec Bank to support the MND Association by choosing them as their charity of the year in 2019. Charles had worked for the investment bank for more than ten years and was a familiar face around their London office.

Shortly afterwards Investec’s ‘Crack the Code’ campaign was born and planning for the fundraising calendar began. A number of events were held, and Charles’ colleagues all showed him their support. In addition, a charity single which included words from a poetry book which Charles had written was produced. Just over 12 months later and the team at Investec have smashed their original target, raising an amazing £135,000 to support research into MND. Charles’ poetry book, Vanishing Voices of the Namib, is still available from the Association’s West Surrey Branch. Charles Malcolm is pictured being presented with a cheque from his colleagues at Investec, from left to right, Tarryn Preston, Andy Higgins, James Arnold and Emily Kelsall. www.mndassociation.org

TandemWoW safely home after epic 18,000 mile journey 30

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FTER more than 18,000 miles, 263 days, seven hours and seven minutes Rachael Marsden and Catherine Dixon are back home after bidding to become the fastest women to cycle around the world on a tandem. Rachael, an MND nurse consultant and Catherine, who is married to the Association’s chief executive, Sally Light, arrived home on 18 March after beating travel bans in France - imposed as a result of the coronavirus outbreak – to make it safely back over the Channel. Their epic journey started last June when they climbed onto the saddles of their pink tandem called Alice, outside the Beeline bike shop on Cowley Road in Oxford. Since then, they have travelled through 25 countries and five continents, braving monsoons and bush fires along the way. As well as taking on the world record, Rachael and Catherine – known as TandemWoW - have raised an incredible £36,379 which will be split between the MND Association and Oxfam. Speaking after arriving back home, Rachael said they had been particularly grateful for the support of the whole MND community. She said: “They were all wonderful and so responsive. From commenting to our posts on Facebook to the moving stories we heard about as part of our dedication days, the MND community was never very far from my mind.” Catherine said it had been a nervewracking race to the finish line. She said: “As we were making our way through France everything was shutting down around us. First it was restaurants and hotels, which caused difficulties with food and accommodation, then restrictions on travel. Time was against us, so we dashed to the coast and managed to get on one of the last ferries back to the UK. We were very relieved to get back safely. Catherine said they had both been absolutely determined to complete the journey, despite there being many difficulties along the way. She said: “We did experience hard times and things you just can’t predict. There were bush fires in Australia, monsoon rain, flies in Australia which crawled around your eyes. I found the food in America particularly difficult. We needed nutritional food to keep us going but it was so hard to get hold of fruit and vegetables. Obviously

“We were overwhelmed by everyone’s support and generosity – it really was amazing. Unfortunately, we had to cancel a party which we had planned for the Saturday night.”

towards the end of the journey we also had the pandemic – so many things were out of our control. If anything had stopped us it would have been something like that, but we were absolutely determined to finish. “There were many highs too. Italy was wonderful, cycling into Venice was magical as was the Croatian coast where the sunsets were incredible. Arriving in Istanbul was an amazing moment as it marked the end of our journey through Europe and the start of Asia. In India, we were followed everywhere by people on motorbikes and there were constant requests for selfies! Crossing the desert in Australia was incredible – everything there is on such a massive scale. The journey into Morocco and then into Spain was fantastic. We cycled right through the centre of Spain and up through the Pyrenees. “I felt our journey really highlighted the issues surrounding climate change. We set off last summer in searing heat – it was incredibly hot as we made our way through Europe – then it was so wet in India. But I think more than anything else, we realised that we are all fundamentally the same wherever we are, and the vast majority of people were very kind and generous.” Rachael said: “This was a once in a lifetime opportunity - when you cycle you see life in a completely different way. It was incredible to see the different subtleties we experienced as we crossed the border into each country. It would take a while to adjust. “There were hundreds of wonderful moments but one which I will always remember was in Italy. I remember looking through the buildings and suddenly seeing The Leaning Tower of Pisa - it was just beautiful. “I don’t think I will look at life in the same way again. Seeing the world as we have makes you realise what’s important, simple things like tap water, which we all take for granted.” Catherine said: “We were overwhelmed by everyone’s support and generosity – it really was amazing. Unfortunately, we had to cancel a party which we had planned for the Saturday night because of the virus but we are determined to celebrate with everyone when the time is right.” To sponsor Catherine and Rachael’s fundraising efforts please visit https:// uk.virginmoneygiving.com/tandemwow www.mndassociation.org

‘I know dad would

Aditi and her family with her dad Sanjeev, who died in 2017

PURRED on by her dad’s determination, Aditi Shenvi will run the Royal Parks Half Marathon for #TeamMND this October. Aditi’s dad Sanjeev died in 2017 after living with MND for 19 years. “I always wanted to do a half marathon and thought it would be a great way to raise money for research into MND. It is also nice way to remember my dad. I think he would have been proud of me, and my mum and sister have been really supportive about this.”

25-year-old Aditi said: “My dad suffered from motor neurone disease for 19 years; 12 of which he spent on a ventilator. He was diagnosed when I was four and my sister was nine. The disease put our entire family, especially my mum and dad, through very difficult and trying times. Despite the hardships

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and the terminal condition of his illness, my dad never gave up and continued to support, inspire and motivate everyone around him until his very last day.” PhD student Aditi used to run in India where she lived with her family. Since moving to the UK, she has been running 5ks and 10ks with friends, but this will be her first ever half marathon. She added: “It is very impressive what my dad achieved despite MND. He found ways to continue working by communicating through eye movements and blinks something that most of us perhaps don’t even realise is possible. Every time I have a problem, I just have to think about him as my problems are nothing compared to what he faced. He still managed to keep his positive spirit despite MND.” She added: “I always wanted to do a half marathon and thought it would be a great way to raise money for research into MND. It is also nice way to remember my dad. I think he

be proud of me’ would have been proud of me, and my mum and sister have been really supportive about this.” There’s still time to join Aditi on the start line this October. Before you make up your mind, take a look at Aditi’s training diary below for some tips.

Sanjeev in happier times

At the time of going to press the Royal Parks Half Marathon was still due to go to take place in October. We will provide the latest information in the summer edition of Thumb Print and you can get the most up-to-date information at visit www.mndassociation.org/rphm Monday: I went out to run 5k in the evening after work. I like to run to clear my head, although at about 3k my back started hurting so I cut the run short as I don’t want to get injured. So many people have sponsored me for this and I want to make my mum and sister proud so I need to make sure I can get to the start, and finish line! I will try again later in the week. Tuesday: This is my indoor climbing day. I do it once a week for two and a half hours and I love it. It is good cross training and it improves my general fitness so makes running easier. Wednesday: Rest day for me as my back is still a little bit sore but I am hoping I can get out for a run tomorrow evening. Thursday: Managed to dodge the rain – I hate running in it as I am clumsy. I made it to 5k without any back pain – phew!

Aditi Shenvi

Friday: Early night for me as I’m going to Park Run tomorrow. I had a quick look at my JustGiving page before I fell asleep and saw my target had passed £1000 which is amazing. That will definitely spur me on in the morning. It is so lovely to see my family and friends donating in memory of my dad. Saturday: Park Run completed! Running in a large crowd gives me an idea of what it might be like on race day – exciting! I am now off for a walk with some friends to stretch my legs. Sunday: Long run day today and I managed my longest run yet – 10k with some friends. We went at a slower pace than yesterday but we were concentrating on clocking up the miles rather than speeding ahead. It goes quicker running in company and we ran a nice route which I like, as looking at nice scenery takes my mind off the distance. I still can’t imagine running a whole half marathon but I am sure I will get there! I can’t give up and I think I get that mentality from my dad.

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branchesandgroups

Branch remembers Arthur with student prize A N essay and a student award, created in memory of much-loved Northern Ireland Branch member, Arthur Newell, has been presented to a third-year medical student from Queens University Belfast. The Arthur Newell Medal and Essay Prize was created by the Association’s Northern Ireland Branch in partnership with the Faculty of Medicine, Health and Life Sciences at the university 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. “I believe more research into the pathogenesis of MND will help us to not only better understand the progression of the condition, but also help in the development of future treatment options, including gene therapy. The Arthur Newell Award provides medical students like myself with an opportunity to learn more about MND and further their interest in neurology.”

In February, Association trustee and Northern Ireland Branch member, Siobhán Rooney presented the prize to student, Brendan Flanagan. He said: “MND is a condition that we rarely see on the wards and after completing three years of medicine, I have only met one patient with the condition. “The Arthur Newell Award has provided me with an opportunity to learn about MND in more depth and improve my limited understanding of the condition. I have written a short piece on the drug Riluzole, the only MND medication approved by the National Institute for Health and Care

Medical student Brendan Flanagan with Association trustee and Northern Ireland branch member, Siobhán Rooney

Much-loved Northern Ireland branch member, Arthur Newell

Excellence (NICE). I was surprised to learn that Riluzole only prolonged life by an average of two to three months in people with MND and that no other medications have so far exceeded this benefit. I believe more research into the pathogenesis of MND will help us to not only better understand the progression of the condition, but also help in the development of future treatment options, including gene therapy. The Arthur Newell Award provides medical students like myself with an opportunity to learn more about MND and further their interest in neurology.” Siobhán said she was delighted to have been able to see the initiative through from initially meeting up with representatives from Queens University Belfast in 2018 to presenting the prize in February. She added that she hoped to see medical students who benefit from the award pursuing neurology as their chosen career in the future.

www.mndassociation.org

branchesandgroups

The perfect start to the New Year

DELICIOUS paella lunch and an afternoon of interesting talks were the order of the day at the East Surrey Branch’s first meeting of the new year. Held on 26 January, more than 50 members and supporters attended the meeting at St Mark’s Church in Great Tattenhams. Special guests included the Mayor and Mayoress of Epsom, Councillor John Beckett and his wife Alison and Sally Light, Chief Executive of the MND Association. After lunch, which was served by John Robbins and his assistant Debbie Nicholls, Councillor Beckett spoke about his year as mayor, while Sally gave an account of her seven years as Chief Executive of the Association. A raffle and other fundraising activities raised more than £250 for the branch.

Company raises £6,000 to support Association’s work

COMPANY based in Wimborne, Dorset has raised more than £6,000 for the Association’s East Dorset and New Forest

Pictured from left to right are the Mayoress and Mayor of Epsom, Alison Beckett and Councillor John Beckett, John Robbins with his assistant Debbie Nicolls and Sally Light, Chief Executive of the MND Association

Branch. Caterpillar Marine Power UK Ltd chose the branch as its charity for 2019 and 2020 with staff taking part in a number of events including an inflatable 5k run, a Halloween event and a Christmas jumper day.

Gifts in Wills

hope A gift in your Will could give

of a world free from MND

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

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thankyou

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

An amazing try!: Hitachi Capital Customer Finance, based in Leeds, held a rugby-themed dress down day to raise funds for the MND Association. Staff members Joanne Hall and Jenny Firth nominated the Association to be the charity which benefitted from the company’s first monthly dress down day of the year. As Rugby League fans, Joanne and Jenny were inspired by Leeds Rhinos player Rob Burrow who shared news of his MND diagnosis late last year.

‘For Granny’: Eight-year-old Ruby has been busy fundraising at the 1st Dursley Brownies group where she is a member. She created a ‘Jolly Jars’ tombola to raise money in memory of her granny who had MND and raised £70! Ruby is following in her mum Vikki’s fundraising footsteps, who has been a dedicated supporter for many years since losing her mum.

‘Following in Dad’s footsteps’: Before being diagnosed with MND, Sarah’s dad enjoyed an amazing running career, completing both the London and New York marathons among many others. Inspired by her dad, Sarah downloaded the Couch to 5k app and soon set her sights on completing a 10k run. Along with her friends Laura and Clare, not only did she complete the Wilmslow 10k in just over an hour, she also raised an amazing £1,350. She said: “The work the MND Association does is phenomenal and helps us support my dad in the best way we can. Without fundraising like ours, the Association simply can’t help families who so desperately need it in their darkest times.”

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Raising money with every step: Beth took on the Nottingham Half Marathon and raised £1,200 in memory of her mum, Anne who died from MND. Speaking after the race she said: “It was really hard, especially around mile 11, but the thought of what I was raising money for and with lots of encouragement from the crowds, I carried on and crossed the finish line in two hours and 42 minutes. I felt quite emotional afterwards receiving my medal. Hopefully this is the first of many!”

thankyou

On the road to success: Agi, and her husband Stephane, were joined by their friend Binta to complete the 20km London Winter Walk in January. Agi’s dad sadly died from MND before the team could complete the challenge, but the trio raised an incredible £1,300 in his memory. Agi boosted her fundraising by holding coffee mornings at the driving test centre where she works. She is determined to continue raising funds and awareness in his memory to help fund research.

Helping to make a difference: David’s friend lost her husband to MND and this inspired him to find out more about the disease. The writer now dedicates his books to making a difference in the fight against MND. David, pictured here with his wife, is living with disabilities himself so being able to use his writing skills in this way means the world to him. David writes about life on the Norfolk/Suffolk Broads and more recently found a niche writing about local world war history. His work commemorating the local US contribution has been recognised by RAF Molesworth and he was sent a medal by a US Navy Commander. You can find out more here: www.evolution-Norfolk-broads.co.uk

The gift of giving: Sisters Maisie and Lillie have done lots of fundraising in memory of their nanny Glynis who died from MND, including organising a tuck shop and cake sale. This time, nine-yearold Maisie worked with her friend Isabella to run a tombola stall at their school’s Christmas fair to raise money for the Association. The girls organised everything themselves, from sourcing donations, designing and creating signs to selling tickets on the day. Their hard work paid off when they raised a brilliant £140.85.

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

‘How I’m using technology to carry on writing’

“I

was diagnosed with MND in January 2018, initially with weakness in my left arm, followed by my left hand. Subsequently my right arm and hand have become progressively affected, to the point where I now have virtually no function in either arm or hand. Early on, using a computer keyboard became difficult, which was particularly problematic as much of my time is spent writing and publishing books. By adopting various technological solutions, I have so far managed to ameliorate my deteriorating ability at each stage, and I thought that it might be helpful to share these solutions. “With my right eyebrow I can do everything from tuning my radio to sending Morse code – how cool is that?!”

“At the point when I found using a physical keyboard became impossible, I found that Microsoft had introduced an on-screen keyboard facility within Windows 10. With this I was able to type relatively quickly, using the mouse to point the cursor at a key and then left clicking, the typing speed is enhanced by a very good predictive text function. I found it helpful to have the mouse on a low table. “There then came a point when it was increasingly difficult to operate the right and left click buttons of the mouse and so I needed a solution to this problem. I found the answer in the form of a double foot switch using downloadable software from the manufacturer, the two switches can be assigned the left and right click functions. “The foot switches work extremely well but more recently I have found it increasingly difficult to move the mouse around the table and so this prompted me to investigate hands-free solutions.

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The Environmental Controls department of the NHS Norfolk Community Health and Care NHS Trust were very helpful in allowing me to try a dedicated tablet with eye control and they would have been happy to supply me with a system, but it would not have solved the problem when using my desktop computers. “It was while searching for standalone eye tracking units to use with my computers that I stumbled across ‘Camera Mouse’. This system utilises a webcam to track the movement of your head, which in turn controls the position of the cursor on the screen. The software was developed by the Computer Science Department at Boston College USA and they have allowed it to be made available as a free download. The only hardware necessary is a webcam. I have set up the ‘Camera Mouse’ on both of my

desktop computers and they work well, particularly when you tweak the settings for your desired response. You simply place a small green square over the particular feature on your face to be tracked – such as an eyebrow. Unlike eye tracking, you need the ability to be able to move your head, but at the high sensitivity settings the amount of movement to move the cursor across the screen can be quite small. “The use of ‘Camera Mouse’ with foot switches has not only allowed me to continue with my writing and publishing but also to continue with my hobby of ham radio. With my right eyebrow I can do everything from tuning my radio to sending Morse code – how cool is that?!” Stephen Appleyard, via email Latest news from the Think Tank – pages 14 and 15

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

Social media

Such a thoughtful gesture

Y mother and father-in-law Regan and Tom Lewing celebrated their 50th wedding anniversary on 24 January and asked the guests at their party to donate to the MND Association instead of giving them gifts. They subsequently raised £500. I thought this gesture was so thoughtful and it was much appreciated, as my mum has MND.

Online forum A place for people affected by MND to share experiences and support each other. http://forum. mndassociation.org Facebook www.facebook.com/ mndassociation Twitter @mndassoc

Jo Clarke, Via email

MND Connect

‘For my wife – the gift of now’

“I

recently wrote a poem for my wife, expressing my gratitude and love for all that she does for me as my wife and my main carer. She, and everyone else who has seen it, has urged me to share it as she feels it applies to all carers. She also said she found it uplifting. Here it is.” Sarah Watts-Peters, via email

The Gift Of Now When I struggle to stand you uplift me, when I stumble you steady me, when I cry with frustration you ‘cwtch’ me close. When I can’t speak you understand me, when I mourn lost times you create new memories, when I surrender to my weakness you share your unwavering strength. When I despair you remind me of hope, when I stamp with anger you stamp back, harder! when I close in on myself you open your boundless heart to me. When I grieve inconsolably for a future unshared, a life unlived, a love unfulfilled. You remind me of the precious gift of now.

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

0808 802 6262 mndconnect@mndassociation.org Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org If you would prefer to receive your copy of Thumb Print under plain cover please let our membership officer know. Call 01604 611855 or email membership@ mndassociation.org

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

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