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The magazine of the Motor Neurone Disease Association

Thumb Print Autumn 2021

The time is now #United2EndMND campaigners visit Downing Street

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Pages 4 and 5 Scrap 6 Months campaigners celebrate important victory The latest news on our campaign

Welcome…

Pages 6 and 7 #United2EndMND: The fight against MND reaches Downing Street Our campaigners head to Westminster

Page 9 ‘Determined to use my experience to support people affected by MND’ Introducing our new trustees

Page 11 Unwrap some festive fundraising ideas! How you could help to give the gift of hope this Christmas

Pages 14 and 15 The eyes of the world are on us Getting ready for the International Symposium on ALS/MND

Pages 35-37 Thank you for all you do! Highlighting the efforts of our amazing fundraisers On the cover: London calling: Our campaigners head to Westminster as part of our #United2EndMND campaign.

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Reg. charity number 294354. Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. 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 2021.

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

In a year that has seen our community come together in the most extraordinary ways, I was extremely proud to learn that the Association had received a high commendation at the prestigious Third Sector Awards. This commendation really is an award for everyone. It’s for every volunteer who has gifted precious hours of their time to support us; every fundraiser who has pushed themselves to raise vital funds; every campaigner who helps make our voice heard; every researcher who gives us hope; and - most importantly of all – it’s for every single person who is living with or affected by MND. It’s a poignant reminder of just how far we have come together and of the importance of the work we do – driving research, campaigning, raising awareness and supporting people living with MND. As we look ahead to the new year, our Association is strong and more determined than ever. We’re investing in ground-breaking research, including clinical trials, and we’re pushing the Government to fund more. Our International Symposium on ALS/MND is bringing the world’s brightest talent together to discuss new strategies to beat MND and our researchers are making progress every day. We’re helping to make life better for people whose lives are turned upside down by MND – helping to improve standards of care, and opening up access to more equipment and improvements to homes. We’re campaigning for a fairer benefits system and we’re supporting families – making sure children and young people have the support they need, whenever they need it. The fighting spirit and generosity of our community is what helps us make the difference. Thank you for all that you do to support us.

Sally Light Chief Executive www.mndassociation.org

Campaigners celebrate

Representatives from the MND Association together with actor, Jim Carter, hand the Scrap 6 Months petition to Downing Street in 2019

“I had to watch my dad struggle to access the benefits he was entitled to from a system he had paid into his whole life. No one should have to worry about money when they’ve been given a devastating terminal diagnosis.”

At the time, to access the Special Rules for Terminal Illness fast-track process, there needed to be ‘a reasonable expectation of death’ within six months, something which was almost impossible

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to predict in conditions like MND. As a result of the Scrap 6 Months campaign, the then Work and Pensions Secretary, Amber Rudd, promised to review the process and in in July this year, the Association was delighted to learn that the six-month rule will be axed and access to the fast-track process will be extended to all those whose life expectancy is 12 months or less. The news has been welcomed by many of our members and supporters including Becky, whose father Tony struggled to access the benefits he needed when he was diagnosed with MND. She said: “I had to watch my dad struggle to access the benefits he was entitled to from a system he had paid into his whole life. No one should have to worry about money when they’ve been given a devastating terminal diagnosis. I’m pleased that the DWP has finally committed to scrapping the cruel six-month rule and I hope no one else

living with MND will have to go through what my dad went through.” Reach Plc

FTER three years of tireless campaigning the process for claiming benefits is set to be made easier for people living with MND. In 2018, the MND Association joined forces with Marie Curie to launch the Scrap 6 Months campaign, which called on the Government to make it easier for people living with terminal illnesses like MND to access the benefits they need.

Becky Gatenby, whose father Tony struggled to access benefits

Jessica Morden MP, who supported the Scrap 6 Months campaign throughout, said: “I’ve been proud to champion Scrap 6 Months in Parliament and welcome the news that the sixmonth rule, which has caused so much misery for terminally ill people and their families, will come to an end. This announcement is a victory for all those who have campaigned tirelessly for change.”

important victory The Association’s Chief Executive Sally Light said: “This is a victory for the hundreds of campaigners across the country who have worked tirelessly alongside the MND Association for three years, raising awareness of the flaws in the current system and urging the Government to change the rules. “The six-month rule has always been a barrier for people living with complex and unpredictable terminal illnesses such as MND. It remains the case that providing an accurate prognosis for someone living with MND is near impossible. On balance we believe that if the rules change as proposed, the vast majority of people with MND should be able to access the Special Rules. “Now the recommendations must be implemented quickly to ensure no more people, already facing the most difficult time of their life, have to suffer the

indignity of a long drawn-out process to claim the support they not only desperately need, but are entitled to.” The next step will be for the legislation to be passed by Parliament. Until then, the Association will continue to press the Government to ensure reform of the system is brought in as quickly as possible. “This is a victory for the hundreds of campaigners across the country who have worked tirelessly alongside the MND Association for three years, raising awareness of the flaws in the current system and urging the Government to change the rules.”

For more information about the Scrap 6 Months campaign visit www. mndassociation.org/scrap6months

Scrap 6 Months: The story so far • April 2018: Scotland votes to scrap the six-month rule • June 2018: The MND Association launches the Scrap 6 Months campaign across the rest of the UK • July 2018: Madeleine Moon, a former MP who is personally affected by MND, to raises the issue in Parliament • September 2018: Marie Curie joins the campaign • November 2018: 52 MPs show their support by attending a parliamentary drop-in hosted by us and Marie Curie • January 2019: Daily Express joins the fight with a front-page story, and we launch a petition • June 2019: 31 clinicians publicly support the campaign in a letter to The Telegraph • July 11, 2019: Success! The Government launches a review into the benefits system for terminally ill people • August 7, 2019: Petition, signed by 55,000 supporters, is delivered to Downing Street • December 2019: More than 800 candidates in the General Election back the campaign and 130 are elected as MPs • March 2020: People with MND share their experiences as part of the Government’s review • July 2020 – February 2021: With our support, Jessica Morden MP and other MPs continue to raise the issue in Parliament • June 30, 2021: Northern Ireland announces it will scrap the six-month rule • July 8, 2021: The UK Government announces it will scrap the six-month rule

We’re pushing forward with Act to Adapt campaign

Nigel, who is living with MND, has had to wait 11 months for an assessment

VERYONE who is living with MND has the right to live in a safe and accessible home and the Association is working hard to ensure the right help and support is available. In September 2020, the Association launched its Act to Adapt campaign to raise awareness of the challenges that people living with MND are facing. While the situation is improving, we know that there is still a variation in the support available across England depending on local council policy. Nigel, who is living with MND, had to wait 11 months for an initial assessment to find out whether the council would provide him with a grant to adapt his home. He said: “My MND has progressed enormously… we’re exhausted, angry and have no energy for anything but the basics of daily living. If it wasn’t for the NHS, the MND Association and our local hospice, we’d be high and dry.” The Association is asking all councils in England to improve the support they provide by fast-tracking support for people with a terminal illness and removing financial assessments for adaptations under £5,000. This would make a significant difference for people with MND. We’re calling on all our members to contact their local councillors to raise awareness of MND and the needs of those who have it. You’ll find more information about our campaign at www.mndassociation.org/acttoadapt

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The #United2EndMND campaign reaches Westminster

S a group of people living with MND and campaigners gathered in Westminster, the heartfelt stories behind every signature on the letter they were delivering to Downing Street were never far from their minds. Inside the envelope addressed to Prime Minister Boris Johnson was a letter signed by campaigners and hundreds of people living with MND – a large number of them in their 30s and 40s – urging the Government to invest £50 million over the next five years to form a research institute. With the help of further funding from the MND Association, MND Scotland and the My Name’5 Doddie Foundation, the institute would accelerate progress, putting researchers in reach of effective new treatments for MND. It was a moment Nicola Waters, a leading figure in the #United2EndMND campaign, who is living with MND, says she will never forget. She said: “At every moment I was thinking about all the people living with

MND who couldn’t be with us and every person with MND who took the time to sign the letter. It was a very emotional moment for all of us and I felt very privileged to be there.” Earlier in the day, a group of people living with MND, including sporting heroes Rob Burrow and Stephen Darby, representatives from the MND Association, MND Scotland and the My Name’5 Doddie Foundation had spoken with 22 MPs at a meeting held in Westminster. During the event, MPs had the opportunity to learn more about the #United2EndMND campaign and the significant difference the research institute could make to the future of MND research. Nicola said: “Everyone who came to speak to us seemed really engaged. People like the Secretary of State for Health and Social Care, Sajid Javid, were asking lots of questions and were taking the time to read through - and really understand - the proposal. There was

plenty of discussion which was very encouraging to see.” Chris James, the Association’s Director of External Affairs, accompanied coalition representatives to the door of Number 10. He said: “The handing in to Downing Street of the letter signed by hundreds of people with MND was the very moving culmination of months of campaigning and lobbying by the members of the coalition driving the #United2EndMND campaign. “By working together as people with MND, charities and neurologists we are making our voices heard at the very highest level. While the response we received from MPs during the day was very positive, we won’t stop until we have secured the £50 million investment needed to take MND research onto the next level.” To keep up to date with the latest developments visit www. mndassociation.org/united2endmnd or search for @mndassoc on Twitter.

Rob Burrow MBE and Stephen Darby pictured on the steps of Number 10

Yvette Cooper MP meets Rob Burrow MBE

Secretary of State for Health and Social Care Sajid Javid discusses the campaign with former West Midlands Police Assistant Chief Constable Chris Johnson

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reaches Downing Street An open letter to Prime Minister Boris Johnson

‘W

E are a group of patients living with motor neurone disease. We are calling for more investment and concerted action to find a cure or life-saving treatment for this horrific disease. ‘MND is a death sentence. Each of us will lose the ability to walk, use our arms and hands, speak, eat and ultimately breathe. Most of us will become completely paralysed and trapped in our own bodies. We will all die of the disease because there are no treatments to help us. One-third of us will die within a year, and twothirds within two years. And MND is not rare – it will kill 1 in 300 people or 200,000 of the current population. ‘However, research has now reached a point where a cure or life-saving treatments can be found. This is thanks largely to the work of charities and donations from the public. The UK Government does invest but at a level of less than £5 million a year (not counting research into neurodegenerative disease more generally, which is of little help to terminally ill MND patients). This is insufficient for a disease of this nature. ‘World leading UK scientists propose co-ordinated action across all UK MND research centres to establish a virtual MND Translational Research Institute to accelerate the delivery of life-saving treatments, at a cost of £50m over five years. A detailed plan has been submitted to the Government, which will also establish the UK as a leader in this area of research and forge the way to discoveries in related diseases such as dementia. The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need. We patients fully support our scientists and charities. ‘Covid has shown what can be done where there is a will and sufficient investment. MND patients are fed up with being told that it will be many years until life-saving treatments can be developed – we believe they can be delivered much sooner. How many more people will die a horrific death before we push for change? How many more families will be traumatised at watching their loved ones go through such an ordeal? Many of us may not survive long enough to benefit but we want to prevent the suffering of future patients: 200,000 of the current population. We urgently appeal for action and investment now.’

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Chris, 54, father of a son and daughter aged 11 and 16, senior police officer, Bromsgrove. Lee, 58, married father of one son, forced to stop adored career early along with his wife, Sussex. Emma, 40, mother of a four-year-old daughter, deputy headmistress, Northants. David, 64, father and grandfather, publisher/events manager, Surrey. Nicola, 47, mother of two sons aged nine and six, Essex. You can read the letter online at patientsunited2endmnd.org

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Association visitor Justin helps with new designs W HATEVER your background, whatever your skills, you can help the Association make a huge difference in the fight against MND. Following the launch of the Association’s membership strategy earlier this year, we’ve been encouraging our members to think about the ways they could use their own unique skills and experience to help us enhance and develop the work we do.

Justin Anderson pictured with his business partner David Norton

Among those taking up the challenge is Justin Anderson. As well as being the Association visitor coordinator for East Sussex, Justin volunteered to support the Association by developing a new logo for MND Association Membership with the help of his business partner and Creative Director, David Norton. Justin explained: “During the pandemic we found that some of our project work dried up and for the first time in 30 years we found ourselves with time on our hands. “I contacted the Association to offer our services and it coincided with the Association’s development of its membership strategy.” Justin and his team came up with a ‘mood board’ of ideas and then worked alongside the Association’s teams to develop the new concepts resulting in the new look of our membership materials. He said: “It was very interesting to be involved and to look at the work of the Association in a different way. Many of our members have individual skills which could be very beneficial to the whole MND community.” If you would like to learn more about the opportunities available email volunteering@mndassociation.org or contact your Area Support Co-ordinator.

Fundraising in memory of Terry

FAMILY from Gwynedd in Wales have come together to raise money for the local branch of the MND Association in memory of their beloved husband and stepfather who died in March. “The MND Association is a cause very close to all our hearts. They were a lifeline to us and do so much to support people living with MND.”

Terry Williams was diagnosed with MND in February 2020 and died in March this year. In December, Terry, Claire and her children Dylan and Catrin raised £1,000 by organising a raffle. In July, Claire and Catrin took part in a sponsored walk from Pennygroes to Caernarfon and

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Claire, pictured with her daughter Catrin taking part in the sponsored walk

Claire’s husband Terry who died from MND in March

raised more than £2,000. Claire said: “The MND Association is a cause very close to all our hearts. They were a lifeline to us and do so much

to support people living with MND. We wanted to do this walk in memory of Terry whom we love and miss very much.”

Association’s Board welcomes new trustees C HAMPIONING the needs of people living with and affected by MND will be among the priorities for two new trustees who were officially welcomed to the Association in July. Debbie Martin and Liz Ellis were elected by members of the MND Association during the summer and took their places on the Board of Trustees at the Association’s online AGM in July. Liz’s son was diagnosed with the disease in November 2018 and is cared for at home. She said: “Nothing prepared me for the life changing impact caused by MND. There are so many obstacles, getting the right care is a battle. There can also be a lot of negativity and a feeling that there is ‘no hope.’ My short experience as a trustee has already brought me to feel that there is hope and much support. I am inspired by the dedication and commitment of everyone within the Association and the pioneering work taking place.

Debbie Martin, Liz Ellis, Dr Usman Khan and Jim Marshall

“I’m determined to use my own experience to help others affected by MND and as a trustee, contribute as best I can to the Association’s invaluable work.” Debbie has worked in the NHS for 40 years and is a qualified nurse. Her partner, Rich, was diagnosed with MND in February 2020 and died just 225 days later in September 2020. She explained: “It is a real privilege to have been elected to the Board – the Association is quite amazing, and I’m delighted to be part of it. “I want to use my experience to help others and drive the Association’s work forward.”

Dr Usman Khan and Jim Marshall were also welcomed to the Association’s Board of Trustees in May. Jim was inspired to join the Board to continue the work of his wife, trustee Janis Parks who died in 2019. He will take on the role of Honorary Treasurer. Dr Khan, who was diagnosed with multiple sclerosis (MS) 25 years ago, will use his experience of neurological conditions to further the Association’s work. He is also the Association’s Chair Elect and will be working alongside the current Chair Richard Coleman until he stands down in 2022.

Together we’re building an unstoppable wave of momentum

S we approach the end of 2021 we do so with a real sense of hope and optimism for the

future. Throughout the year, the Association and wider community has once again pulled together in the most extraordinary ways, enabling us to continue raising vital funds, shout even louder about MND and push for meaningful change. In September, a group of people living with MND were joined by representatives from the MND Association and colleagues from MND Scotland and the My Name’5 Doddie Foundation in London to discuss our #United2EndMND campaign with MPs. Together we are urging the Government to invest £50 million in

MND research to ensure we can turn the tremendous progress being made by our researchers into effective new treatments and ultimately, a cure. Feedback from the event, which also

saw a letter addressed to the Prime Minister, handed into Downing Street, appears to be overwhelmingly positive – but we will not stop until MND research receives the funding it so badly needs. On behalf of the Board of Trustees, I would like to thank all those people living with MND who attended the event, all those who signed the open letter and all of our volunteers and supporters for getting behind this important campaign. As we continue to work together, building partnerships with others and sharing our collective skills, we will build up an unstoppable wave of momentum which will propel us ever closer to our vision of a world free from MND. The time is now. Richard Coleman, Chair www.mndassociation.org

Drivers put MND research in pole position

Gideon Williams, who is living with MND, pictured at the start of the Karting4MND event. Picture: Jakob Ebrey

TARS from across the world of motorsport took part in a special race in August to help raise money for research into MND. The Karting4MND event was held at the famous Thruxton circuit in Hampshire and was hosted by Racing4Charity’s co-founders, Bill Brabham and Bill Williams. The event was held in honour of Bill’s brother Gideon, who is living with MND and in memory of former racing driver Neil Cunningham, who died from MND in 2016. The race, which saw teams compete for the Gideon Williams Trophy for winning the race and the Neil Cunningham Trophy for setting the fastest lap, raised more than £10,000 for the Association. In another poignant moment, Salvo Cachia – a long-standing supporter of Racing4Charity, who also suffers from

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MND – managed to drive a lap of the Thruxton circuit ahead of the two-hour endurance race. “Every penny raised will help the MND Association further vital research to help thousands of people living with this cruel disease.” Co-founder Bill Williams said: “I am absolutely stunned at the level of support the return of Racing4Charity has gained here at Thruxton. I am so proud of the motor racing community for giving up their time and to the friends and family of Gideon, Neil and Salvo for getting behind the event, all in aid of the MND Association. Thank you all, from the very bottom of my heart. “Every penny raised will help the MND Association further vital research to help thousands of people living with this cruel disease.”

David Brabham said: “The Racing4Charity team did an amazing job staging Karting4MND and I am so proud of what’s been achieved. I’m incredibly grateful to the motorsport community for racing together for this event, it was fantastic to see everyone having such a great time whilst making a huge difference for a great cause. The best thing of all was seeing the huge grin on Gideon’s face starting the race. Same again next year?” Team Bennie and the Jets, with drivers Ben Davis, Tylor Ballard, James Duncan and Paul Streather, were crowned the race winners and the first ever recipients of the Gideon Williams Trophy. The Team’s Paul Streather was awarded the Neil Cunningham Trophy for setting the fastest lap of the race. For more information about future events visit Racing4Charity.co.uk

Unwrap some festive fundraising fun this Christmas

Helen Pounds and her daughters, Carys and Bridie, completing their virtual Santa run last year

HE countdown to Christmas is well and truly underway and there has never been a better time to show your support for people living with MND. As the big day approaches, the MND Association has come up with a number of festive fundraising events for our supporters to enjoy. During the weekend of 11-12 December we’re asking you to join our Virtual Santa Run and walk, jog or run 5k wherever suits you. Sign up now to receive your Santa suit and get ready to take part in the jingle jog!

If that all seems a bit too energetic, why not join our annual MND PJ Day on 15 December? Bring some festive cheer to your office, school or online meeting, by dressing up in your cosiest Christmas pyjamas, sharing a selfie on social media and making a donation. You your friends, family and colleagues could even donate to the Association instead of writing and sending Christmas cards to give people living with MND the gift of hope. For more information about festive fundraising, visit www.mndassociation.org/festive4MND

We’re making changes to our online shop

S we start to look ahead to Christmas, the Association is making some changes to its online shopping experience. While this is happening we will only be accepting orders over the phone and online. For this reason we have decided not to produce a Christmas catalogue this year. While there may be some temporary disruption during this period, our new and improved online shop should be fully

operational again in November. You can still make an early start on your Christmas shopping by visiting www.cardsforcharity.co.uk where a range of our festive cards will be available. Simply search for ’motor neurone disease association’ to see what’s available to purchase. Keep up to date by visiting https://shop.mndassociation.org/ or the Association’s social media channels www.mndassociation.org

‘I try to stay positive, no matter what’ Susan Cheese was diagnosed with MND two years ago. Here she shares her approach to coping with it, shaped by her background as a yoga teacher

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E are all familiar with the brave and courageous sports people who are living with MND so know that this condition can strike the healthiest and fittest among us! I am a yoga and meditation teacher who was diagnosed two years ago with bulbar onset MND. I didn’t give up teaching straightaway, my body was still pretty strong at that point but my voice was fast disappearing, so I used the Predictable app on my iPad to type in the things I needed to say during my classes and played them to enable clear communication. It was marvellous. Then the pandemic struck, and the classes had to stop anyway. “There’s nothing wrong with negative emotions, we are human, we experience them and I’ve found that the best way to deal with them is to fully feel them as they pass through me but not to hold on to them. Let them go.”

I would like to share some tips with people who are living with MND, their carers, loved ones and friends about how to approach the condition in a different way. This has arisen out of my ongoing personal yoga and meditation practices. You see yoga is not just about having a good stretch or tying yourself up in knots! It is much, much more than that. So, I’d like to share some tips with you which I hope will be helpful. If you don’t like it, change it. If you can’t change it, change the way you think about it! This has been a helpful statement to myself, and many others, over the years and really gives power to a positive outlook no matter what. We need to change our perception if the way we look at things drags us down or creates other negative emotions. And let’s face it, I’m sure we have all felt negative emotions in response to this condition, right? There’s nothing wrong with negative emotions, we are human, we experience them and I’ve found that the best way to deal with them is to fully feel them as they pass through me but not to hold on to them. Let them go. How do I do

this? By observing them, by knowing that I am not my emotions even though I feel them, by letting the earth absorb them. We are probably all familiar with the phrase, ‘Every cloud has a silver lining’. Could it be possible that the MND cloud has a silver lining? I have certainly found this to be true since it has sharpened up my awareness of who I actually am, my soul, as my body diminishes, and my spiritual practices, which were already in place, have helped enormously, of course. Now, not everyone has such practices and so I have some more practical tips too! Acceptance: We are constantly being told that although research is being carried out, at the moment this is an incurable disease. So, we simply have to accept the condition and all the myriad changes that are happening in our lives as a result. Let us marvel at our ability to adapt to all these changes and at our creativity in the adaptations. Let fascination replace frustration: Does that sound crazy? Try it and see if it helps. When you feel that frustration arising, as we often do, stop and explore the source of the frustration, be fascinated by it - and then accept it! Gratitude: Gratitude is a truly wonderful tool. ‘Count your blessings’ is a wellknown piece of advice, and it really works. Try keeping a journal, either a paper one, a digital one or even a virtual one (in your mind) and every day, in spite of all the struggles and challenges you have faced (and there are many!), note down at least five things which you are nevertheless grateful for. These will differ for all of us, depending on our circumstances and the progression of the condition, but here are a few ideas: • A roof over our heads • Food to eat (or in my case, pour down my PEG!) • Clothes • Family • Friends • NHS workers • Transport

• • • •

Sight Hearing Other senses A sense of humour

Laughter: It’s so important, turning the weird moments in our lives into sources of real amusement. For instance, when my husband first started helping me get into bed there were occasions when I ended up sprawled all over the bed in a state of collapse! Positive affirmations: Or power statements! This condition can be very disempowering, if we let it, and a great way to counter this is to keep repeating positive phrases such as… • I am filled with strength • I am stable and balanced • I am confident • I can do this • I am loved • I see beauty everywhere • I am resilient You may think this is ridiculous, but it really works, so why not try it? Mindfulness: Living in the moment, the here and now, not looking back sorrowfully at how life used to be or fretting about the future. Learn to accept and appreciate the present moment. Find the goodness in the moment. Let go of what was and embrace what is! Spend time outside: Be in nature if possible, in a garden or even any outdoor space and appreciate the birdsong, the vegetation, the sky, and any other beautiful things around you. Fresh air is good for all of us and connecting to nature can be very soothing and nurturing. You may have other techniques which help you and which you would like to share with others. The more we give to each other the better.” If you do have any tips that you would like to share with other members and readers of Thumb Print do get in touch. Contact editor, Clare Brennan at clare.brennan@ mndassociation.org www.mndassociation.org

Professor Ammar Al-Chalabi and the MND Association’s Director of Research Development Dr Brian Dickie pictured at last year’s event

Eyes of the world focus on MND research Dr Jennifer Doudna

Professor Chris McDermott

HE eyes of the world will be watching as the MND Association hosts the 32nd International Symposium on ALS/MND in December. For the second year running, the event will be broadcast live from the Association’s offices in Northampton to a global audience of around 1,800 clinicians and researchers. The four-day event, which is being held from 7-10 December – is a showcase of the significant progress being made across the world in the fight against MND and provides an important platform for collaboration. As part of the programme, 13 experts in MND research and clinical care will provide an important overview of the work being done. Among them will be Dr Jennifer Doudna, who will be opening the Symposium with the Stephen Hawking Memorial Lecture, which aims to bring speakers from outside the immediate world of MND research, to stimulate new ideas and research

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Steve Gleason

collaborations. Dr Doudna is the Founder of the Innovative Genomics Institute in the USA. She is a biochemist at the University of California, and her groundbreaking development of CRISPR-Cas9 – genome engineering technology that allows researchers to edit DNA – earned her and collaborator Emmanuelle Charpentier the 2020 Nobel Prize in Chemistry. Her talk is titled CRISPR: The science and opportunity of genome editing. In his talk, Optimising nutritional support in ALS/MND, Professor Chris McDermott, from the Sheffield Institute for Translational Neuroscience (SITraN) at the University of Sheffield, will talk about OptiCALS (Optimal Calories in ALS), a user-centred nutritional intervention to support people with MND to increase their calorie intake and guide healthcare professionals in assessing nutritional status. The final talk at this year’s event will be from Steve Gleason, who is living with MND. Steve was diagnosed with

MND in 2011 and, with his wife Michel, founded Team Gleason to help inspire others to thrive after diagnosis. He has since worked with global leaders in technology, campaigned for the introduction of two new laws, and received the Congressional Gold Medal, the highest civilian honour in the United States. Steve will talk about Technology to empower living with ALS/MND. Registration for this year’s Symposium is now open and costs £60. Those registering for the event will have access to all the plenary presentations as well as additional oral presentations and around 300 posters in the ePoster Hall. You will also have the opportunity to take part in live Q&A sessions and engage with researchers. For more information about the Symposium and to register, visit https:// symposium.mndassociation.org. For more information about our speakers visit https://symposium. mndassociation.org

Research fund receives additional £500,000 boost from Foundation

FUND established by the MND Association and LifeArc to boost research into effective treatments for MND has been given an additional £500,000 by the My Name’5 Doddie Foundation. The Translational Research Fund, which now stands at £1.5 million thanks to equal contributions from the Association, LifeArc and the My Name’5 Doddie Foundation, will be spent on research projects which are focused on developing new therapies or repurposing drugs already approved for other conditions. The Association’s Director of Research Development, Dr Brian Dickie said: “Our understanding of the causes of MND has improved dramatically over the last two decades but the biggest challenge remains: to turn this knowledge into effective treatments. We believe MND is not incurable, but it is underfunded, so we are delighted that through the three charities teaming up, we are able to ensure our own £500,000 contribution, raised by Kevin Sinfield during his 7 in 7 Challenge

inspired by his team-mate and friend Rob Burrow, will be used to maximum effect.” Doddie Weir, Founder of the My Name’5 Doddie Foundation, said: “This fund gives hope that something can be found soon for those living with MND like myself. Researchers in the UK and Ireland are already making good progress, but urgently need funding to take the science out of the labs and into clinical trials. We are excited to be teaming up with LifeArc and the MND Association who share our vision and hope this £1.5 million fund will make a real difference.” Dr Melanie Lee CBE, LifeArc’s Chief Executive Officer, said: “The expanded fund will help to bridge the gap between fundamental research into MND disease mechanisms and the search for practical treatments. It means we can support more research grant applications of the highest quality with the greatest potential to make a difference to the lives of those living with MND.” For more research news turn to pages 6 and 7.

Helping to make caring ‘visible and valued’

ELPING to make caring more ‘visible and valued’ was the aim of Carers Week 2021. Together with five other charities, the Association supported Carers Week by calling on the Government to provide £1.2 billion of funding to enable unpaid carers to take all-important breaks. A report called Breaks or breakdown, which was published to coincide with Carers Week, showed, unsurprisingly, that carers are exhausted, with many unable to take breaks, particularly during the pandemic. The report

featured Association members Dan and Mark who described their experience. During the week, the Association enabled people affected by MND to meet with MPs to raise awareness of the disease and make the case for greater Government support for carers. The Association offers carer grants of up £500 to support carers, young carers and bereaved carers. Please do apply if you need assistance. You can find the form on our website at www.mndassociation.org/grants www.mndassociation.org

Taking a closer look at care research W

HEN we think about MND research our first thoughts are of laboratories and microscopes, and researchers looking into possible new treatments and a cure for MND. While this work is vitally important in the fight against MND, there are a great many projects looking at ways to improve quality of life. One of these, funded by the MND Association with support from the Stanley Grundy Foundation, the Leslie Mary Carter Charitable Trust and MND Association branches, is a project that has been developing the MiNDToolkit – evidencebased guidelines for the management of behavioural symptoms in MND. As well as the symptoms caused by damage to motor neurons, some people with MND experience changes in thinking, reasoning, and behaviour. These changes are referred to as cognitive and behavioural symptoms and, while these are subtle for many, around 15% of people with these symptoms will develop frontotemporal dementia (FTD). FTD results in more pronounced changes in behaviour, and this can have a significant impact on the lives of those living with MND, their families and carers. Currently there are no established guidelines on how best to manage these behavioural symptoms. A team of researchers from the University of East Anglia, led by Professor Eneida Mioshi, pictured, has developed the MiNDToolkit. This is a collection of guidance for healthcare professionals, and strategies for carers and healthcare professionals to help manage behavioural symptoms. The advice is tailored to each carer. It is hoped that the MiNDToolkit will empower families, carers and healthcare professionals to better manage behavioural symptoms, improving the quality of life of those affected.

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Healthcare professionals who have been trained to use the MiNDToolkit were very pleased with the flexibility of the new platform. It is hoped that the new online approach to the study may facilitate testing the MiNDToolkit in other countries with the team planing to make the platform accessible in various languages in the future. The team is now busy setting up study sites to recruit participants for the feasibility phase. They want to ensure any technical issues that arise with the online platform are addressed in real time, while expanding the study to sites nationwide. Professor Eneida Mioshi

Developing the MiNDToolkit As well as developing the MiNDToolkit itself, the team wants to see it used by professionals and families, ensure it works within a specialist MND setting and measure its impact. The Covid-19 pandemic unfortunately meant that, like many research studies, the project had to be temporarily paused in March 2020. However, the team was keen to find a way to continue their work. As face-to-face delivery of the study was no longer possible, the team focused on converting the original MiNDToolkit into an interactive online platform, with three distinct areas – known as portals – targeted at carers, healthcare professionals and research administrators working on the project. The carer portal includes screening, baseline and follow-up questionnaires about the symptoms of the person living with MND, and the results of the screening. This helps tailor the content of the online platform, ensuring the Toolkit remains relevant to users. The 16 modules offer advice and strategies on how best to manage behavioural symptoms of MND.

Next steps The project is now entering the testing stage. This will help the team to determine the usability of the MiNDToolkit in specialist MND clinics, and to see if it works from a practical standpoint. This part of the project will involve the MiNDToolkit being trialled by a number of carers of people living with MND who display behavioural impairment. This stage will also evaluate which assessments are best suited for future trials. Measures of quality of life, wellbeing and burden will enable the researchers to find the best way to measure the impact of the Toolkit in future. Following that, final adjustments will be made to the MiNDToolkit and the appropriate outcome measures selected prior to a pilot trial. The pilot trial will look at how effective the MiNDToolkit is at managing behavioural symptoms and improving quality of life for carers of people living with MND. Because of the delays experienced due to the pandemic, the project is expected to end in June 2022. If you would like to find out more, you can visit the MiNDToolkit website: mindtoolkit.org.

Welsh housing campaign brings hope of success

Gobaith am lwyddiant gydag ymgyrch tai Cymru

CCESS to timely housing adaptations is a big issue for people living with MND and our members in Wales are certainly no exception. This year, we launched a new campaign – Welsh Homes for MND – with the aim of making it easier for people living with MND to access the support and information they need when it comes to adapting their homes. Using the Senedd elections in May as a platform, the Association has worked with people living with MND, healthcare professionals and politicians to help get the message across. The campaign proved to be a huge success with the Welsh Government announcing that means-testing for small and medium Disabled Facilities Grants would be scrapped by April 2022. We will be monitoring the situation to make sure this commitment is put into practice. We are now calling on the Welsh Government to ensure councils have a transparent, fast-track, nonmeans-tested process for housing adaptations. Thanks to your support, Senedd members from all the main political parties have already expressed support for our proposal. Many of those who attended an online meeting in June were deeply moved by the stories of people with MND who had urgently needed support with their housing adaptations. These stories – together with research into council services – form the basis of our Welsh Homes for MND report and the case for change. We presented this report to Senedd members in early October in front of a virtual audience of people affected by MND from across Wales. For more information about the campaign and how to get involved visit www.mndassociation. org/welshhomesMND.

AE mynediad at addasiadau tai amserol yn fater mawr i bobl sy’n byw gyda chlefyd niwronau motor (MND) ac yn sicr nid yw ein haelodau yng Nghymru yn eithriad i hynny. Eleni, lansiwyd ymgyrch newydd gennym - Cartrefi Cymru ar gyfer MND – gyda’r nod o’i gwneud hi’n haws i bobl sy’n byw gyda MND gael gafael ar y gefnogaeth a’r wybodaeth sydd eu hangen arnynt i addasu eu cartrefi. Gan ddefnyddio etholiadau’r Senedd ym mis Mai fel platfform, mae’r Gymdeithas wedi gweithio gyda phobl sy’n byw gyda MND, gweithwyr gofal iechyd proffesiynol a gwleidyddion i helpu i gyfleu’r neges. Profodd yr ymgyrch yn llwyddiant ysgubol gyda Llywodraeth Cymru yn cyhoeddi y byddai profion modd ar gyfer Grantiau Cyfleusterau i’r Anabl bach a chanolig yn cael eu dileu erbyn mis Ebrill. Nawr mae angen i ni sicrhau bod yr ymrwymiad hwn yn cael ei roi ar waith ar lefel leol. Rydym nawr yn galw ar Lywodraeth Cymru i sicrhau bod gan gynghorau broses dryloyw, llwybr cyflym, heb brawf modd ar gyfer addasiadau tai. Diolch i’ch cefnogaeth, mae Aelodau’r Senedd o’r holl brif bleidiau gwleidyddol eisoes wedi mynegi cefnogaeth i’n cynnig. Mynychodd llawer ohonynt gyfarfod ar-lein ym mis Mehefin lle cawsant eu symud gan straeon pobl ag MND a oedd wedi bod angen cefnogaeth ar frys gyda’u haddasiadau tai. Mae’r straeon hyn – ynghyd ag ymchwil i wasanaethau’r cyngor – yn sail i’n hadroddiad Cartrefi Cymru dros MND a’r achos dros newid. Fe wnaethon ni gyflwyno’r adroddiad hwn i aelodau’r Senedd ddechrau mis Hydref o flaen cynulleidfa rithwir o bobl o bob rhan o Gymru yr oedd MND wedi effeithio arnyn nhw. I gael mwy o wybodaeth am yr ymgyrch a sut i gymryd rhan, ymwelwch www.mndassociation. org/welshhomesMND.

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‘I will be here for Casey until my last breath’ T

HE saying love to the hospital.” conquers all could When she arrived, have been written Samantha learnt that for Samantha and Casey Casey had MND and, Webster, who celebrated in that moment, the their first wedding couple’s world shattered. anniversary in August. She said: “I had heard Last summer, the of Stephen Hawking, devoted couple were but knew nothing about finally able to marry in MND. We knew it was front of a small group incredibly rare for him to of family friends, having be diagnosed at such a had their original plans young age – Casey was cancelled due to the 19 and I was 20. Covid-19 pandemic. “We’d had so many It was a dream come aspirations, so many The couple celebrated their first anniversary in August true for Samantha and plans for the future. We Casey from Liverpool, who have faced enormous challenges wanted to have children together. We were completely since Casey was diagnosed with MND at the age of just 19. devastated. Samantha said: “It was the perfect day. We got married at “As time went by, Casey told me I should go, that I was the town hall and then had a marquee for 30 guests. It was wasting my time, that I should get on with my life and that wonderful to be surrounded by our family and friends and all he didn’t want to hold me back. But I knew Casey was my those closest to us.” soulmate and that I would be there for him, no matter what.” It was a day to cherish for Samantha and Casey, who were Supported by her mum and dad, Samantha and Casey first introduced by mutual friends. Casey messaged her and slowly started to adapt to their new life and in March 2019 they chatted over Facebook for a while before he plucked up the couple got engaged. They planned to marry a year later the courage to ask her out on a date. – but then the world changed. She said: “We met at KFC and we didn’t stop talking! We Samantha said: “Lockdown was really, really tough and talked about anything and everything. We fell in love, got a definitely had an impact on Casey’s mental health. We’ve flat together and just started living a normal life.” had to make changes to the house. We’ve moved from an upstairs flat to a downstairs flat, we now have shower chairs “Casey is my soulmate and he always has and hoists in the bedrooms and living room and we have been. He’s the same person I met four years ago, and I will be here, loving him and caring a mobility van which means that we can now get out and for him until my last breath.” about for walks and days out on the beach. That has helped enormously. It was early on in their relationship that Casey started “We have been living with MND now for three years and experiencing pains in his back and legs and the couple started to fear that something wasn’t quite right. things are changing. We are making plans for the future and Casey is keen for me to go to university, so I’m planning to Samantha said: “He went to the gym quite a bit, so at first go in 2022 – I’m going to study to be a dentist. we didn’t worry. Our GP was quite concerned that it may “Casey is my soulmate and he always has been. He’s the be something affecting his brain. So he had lots of tests same person I met four years ago, and I will be here, loving including an ECG (Electrocardiogram) and lumbar puncture. him and caring for him until my last breath.” Then, one day I got a call from Casey to say that I should go

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wkins Charlotte Ha

Sam and Casey pictured on their wedding day (Picture: DMB Photography)

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UNDRAISERS Stuart Bates and Charlotte Nichols have crossed the finishing line of their gruelling Olympic challenge, raising more than £145,000 to support people living with MND. The couple completed all 102 events featured in the Tokyo Olympic Games in just 17 days, finishing with a marathon in front of a packed crowd in Weymouth. Stuart, a window cleaner, and Charlotte, a student doctor, were aiming to raise £10,000 in memory of Stuart’s brother, Spencer, who was known as Spenny, who died of MND ten years ago. The pair spent around eight months meticulously planning how to achieve all 102 events in the short time frame, while squeezing in long training hours around working full time. They also recruited around 60 current and former Olympic athletes to be ambassadors for the event with many taking time out of their Olympic preparations to help the couple learn the basics of their complex sports. Stuart and Charlotte said: “We are feeling a mixture of elation, pride and exhaustion! It was the perfect ending to finish in Weymouth where Spenny spent his whole life, and to cross the finish line with a huge group of friends, family, well-wishers and world media was completely overwhelming. “Completing 102 Olympic events in 17 days has been physically demanding and taken us to places mentally that we didn’t know existed. To know that we have raised nearly £150,000 for the MND Association makes all of the pain worthwhile and the messages of support that we have received from those affected by MND throughout have driven us on when it felt impossible. We will continue raising awareness and money until a cure is found.” Russell Spivey, Regional Fundraiser at the MND Association said: “I have the honour of supporting many great fundraisers, branches and groups and I think Stuart and Charlotte captured the spirit of the whole MND Association with the Spennylympics. Their fundraising is phenomenal and the awareness they have raised of MND on a global stage is immeasurable.” You can still donate via the Spennylympics Just Giving page. For more details visit www. justgiving.com/fundraising/spennylympics

2020www.mndassociation.org www.mndassociation.org

Golden couple after raising £14 memory of Spe

celebrate 45,000 in nny

Friends go the extra mile in honour of their dads

WO friends, whose fathers are both living with devastating conditions, have taken part in seven marathons over seven days to help raise funds and awareness. Matt Pullinger and Matt Guest ran a total of 183.4 miles over the course of a week – taking them from Kempston in Bedfordshire to Manchester where they ended their challenge by taking part in the Manchester Marathon on 10 October. The friends, who are both teachers in Bedfordshire, ran for their dads – John Pullinger and Malc Guest, who are living with MND and Multiple Sclerosis (MS) respectively. John was diagnosed with MND during lockdown in April 2020. Since then, the whole Pullinger family has been determined to do everything possible to support the Association and set up a Fightback Fund to help raise much-needed funds. Malc was diagnosed with MS in 1990 and Matt took part in the event to raise money for the local therapy centre which supports him. For more information about their challenge, or to donate, visit www.justgiving.com/fundraising/ matts7in7 For more information about Fightback Funds visit www. mndassociation.org/fightback

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Finding information turns a new page

OW can you find all the information you need about MND, in a format that works for you? By using our new Care information finder, a clever online search tool on the MND Association’s website, which helps visitors search easily for care resources. As someone with MND told us, ‘There is so much information available (which is great!) that it can take a while to find what you’re looking for, so an information finder is a brilliant idea.’ The search categories include symptoms and care support. Each category selected will result in a package of links to all relevant resources. For example, if you selected speech and communication, you would receive a list of links to every publication, format or web page for that subject. This means you will receive only what you want in your search and

you won’t miss any relevant information resources. It will include newer formats too, such as animations and EPUBs, for use on e-reader apps. An e-reader app enables you to change the text size, but the words reflow to fit whatever size of screen you’re using. “There is so much information available (which is great!) that it can take a while to find what you’re looking for, so an information finder is a brilliant idea.”

Our user reviewers felt the Care information finder would be extremely valuable. One told us, ‘This way of searching is so simple, clear and easy, and the fact that it works as well on a mobile as on a computer is a win-win.’ Once you have the information you

need, you can send the links to a family member, friend, or health and social care professional. Share one resource, all resources in a chosen category, or an entire page of results if you selected multiple care categories. The links are sent with a quick auto-generated email, but it’s entirely private. One user said, ‘I like that you can also send the email to yourself as a search result, as it’s handy to study the links at leisure.’ You can explore the Care information finder at www.mndassociation.org/ careinfofinder. If you would like to see a list of all our care information, go to www.mndassociation.org/careinfo. To order printed copies of our publications, contact our MND Connect helpline: 0808 802 6262 mndconnect@ mndassociation.org See page 25 for a list of new information launches.

Turning the focus on communication

OVEMBER marks the first anniversary of the launch of the Communication Access Symbol, developed to help companies learn more about accessible communication and how best to support their customers. The symbol has been created by the Royal College of Speech and Language

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Therapists (RCSLT) in partnership with charities including the MND Association. Once they have taken part in the appropriate training, businesses and organisations across England, Wales and Northern Ireland can display the Communication Access Symbol, demonstrating support for

customers who may be experiencing communication difficulties. So far, more than 4,500 organisations and individuals have registered for Communication Access eLearning and on Wednesday, 17 November the RCSLT will be encouraging more to sign up. For more information visit www.communication-access.co.uk

Carers learn a new skill during online event

NCOURAGING carers and former carers to take time out for themselves, meet others and learn a new skill was the aim of an online art group held over the summer. The six-week course, funded by a grant from the Kent Community Foundation and hosted by award-winning artist Tracie Peisley, saw seven people, who care for loved ones with MND and Kennedy’s disease, take part in sessions online. Each carer was sent a box of art materials, including paint and clay, which Tracie then used to guide them through various activities. Tracie explained: “It was important for them to take time for themselves and I helped to create a safe space for that. The work they did reflected the love they shared for their partners and loved ones and often happy shared experiences such as holidays. I think the sessions have also created a positive ripple-effect. I know some of those who attended will want to share their skills and experiences with loved ones.” Among those who took part in the sessions was Carol Swain, whose husband Pete is living with MND. She said: “I really ummed and ahhed about taking part because I am no artist, but I decided to give it a go. The group

Artist Tracie Peisley, who hosted the online sessions

was very encouraging, and Tracie really held us together, guiding us and talking to us. “When the box arrived, it was just like Christmas! It was full of paper, pencils, clay and glue, everything we needed to get started. I’m not very good at art, but I can cook, so when it came to using the clay, I took inspiration from pastry. Inspired by holidays to the Mediterranean, I created plates with lemons and oranges on them and I was really pleased with the results.” Association visitor Judy Keay, whose

husband died from MND, said the sessions gave carers the chance to take their focus away from their responsibilities for a short time, something which is vital for mental health and wellbeing. She said: “It gave us all inspiration to try something new and creative. I’ve decided to carry on painting, and I’ve even enrolled in an adult education course nearby. “Activities such as art and sport are so important for the wellbeing of carers and these online sessions were very wellreceived.”

Bringing all our communities together

S part of our commitment to Diversity, Equity and Inclusion, the Association is in the process of setting up a number of new network groups. The groups enable people with the same or similar experiences to come together, to raise awareness of a particular community and to help us make sure that the decisions we make meet the needs of all those we represent. Our first network group for

the Lesbian, Gay, Bisexual, Trans, Questioning+ (LGBTQ+) community launched in September with other groups for the Black, Asian and Minority Ethnic (BAME) community, disabled and women set to be launched by the end of the year. Membership of the networks is open to staff, volunteers, people with, and affected by, MND and anyone else with an interest in the work we do. In due course it may be extended to include people who are supportive or allies of

the community. People can be involved at whatever level they wish. While some will simply want to be kept informed, others will want to play a more active role and get involved in initiatives and specific projects. There is no minimum commitment and members can dip in and out in line with their circumstances. For more information, contact the Association’s Head of Diversity, Equity and Inclusion, John Gillies-Wilkes at john.gillies@mndassociation.org www.mndassociation.org

Meet the MND professionals: speech and language therapists A large number of professionals are involved in the care of someone with MND. In this series, we discover more about the valuable support these professionals provide and how you can make the most of the services they offer. Further information We have a number of related resources you may find useful: Eating and drinking with MND guide Information sheet 7A – Swallowing difficulties Information sheet 7B – Tube feeding Information sheet 7C – Speech and communication support Information sheet 7D – Voice banking We also have further information for professionals: Information sheet P3 – Managing saliva problems Information sheet P8 – Dysphagia Information sheet P10 – Voice banking AAC Pathway for MND Motor neurone disease: n, Communication, speech and language support We are proud to launch our new guide for health and social care professionals i people l with ith who are supporting MND who have speech and language challenges. It has been written to help professionals provide the best possible communication support to people with MND, their families and carers. Download from www. mndassociation.org/publications or contact MND Connect to order hard copies. Call 0808 802 6262 or email mndconnect@mndassociation.org

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Speech and language therapists provide support with swallowing and communication Sp

PEECH and language therapists (SLTs) provide treatment, support and care to people with MND in tw main ways: two • Assessing and treating speech, language and communication problems to help people communicate better, including supporting access to communication aids. • Assessing, treating and developing personalised plans to support people living with MND who have eating and swallowing problems. Using specialist skills, SLTs work directly with people living with MND and their carers to provide them with tailored support. They also work closely with other health professionals, such as doctors, nurses, and dietitians. Because they are involved in both

swallowing and communication, it may occasionally mean that speech and communication needs can be overlooked. It is important to ensure the SLT considers both aspects of your care, so do ask if your speech and communication needs are not being met. How to access support SLTs work in a wide variety of settings, including community health centres, hospital wards and intensive care units, outpatient departments and peoples’ homes. The NICE guideline on assessing and managing MND recommends that an SLT should be a core member of the MND care team. Ask any member of your care team to refer you to an SLT if this is not the case.

Care information update Sex and relationships Our new booklet on sex and relationships can help promote open and sensitive conversations with partners and health and social care professionals. Regardless of your sexuality, this booklet, which has been endorsed by Relate, helps explore ways to maintain physical connection and replaces the previous information sheets 13A and 13B. The response during development has been incredibly positive, with lots of encouraging feedback. One person affected by MND said: “It helps to be open about a difficult subject, where normally nothing would be said. This stops people with MND from being isolated, as somebody cares and that is important. Information to support sex and intimacy also helps you feel less alone.” Sex and physical affection may be an important part of your emotional life and affect your sense of wellbeing. If you are living with MND or Kennedy’s disease, or are the partner of someone who has been diagnosed, you may be worried about the impact of impaired movement on intimacy. Medical equipment, such as assisted ventilation or a feeding tube, can also cause concerns. Dee Holmes, Senior Practice Consultant at Relate, said: “Both motor neurone disease (MND) and Kennedy’s disease can impact on relationships, sex and intimacy. This guide openly and sensitively addresses likely issues, with ways to maintain intimacy and find support. Whether single and living with either condition, in a relationship or the partner of someone who has been diagnosed, this inclusive guide is well worth a read.” Find this booklet at: www.mndassociation.org/relationships Care information finder Our new search feature is now up and running on our website. It’s designed to help you find the information you need more easily. You can read all about it in our launch article on page 22. Find the Care information finder at www. mndassociation.org/careinfofinder

Information sheet 14A – Advance Decision to Refuse Treatment (ADRT) We have revised this sheet about making advance decisions on life-sustaining treatment to ensure it remains up to date. We’ve also added more information on power of attorney. Care information vlog We have released a new vlog, with updates about all the work we’ve been doing throughout the pandemic. Find the vlog at www.mndassociation.org/ careinfo e-Book resources for e-reader apps We previously mentioned the launch of a new EPUB (electronic publication) format for a selected number of our resources. This format can be read on e-reader apps where text can be resized and reflowed to fit the size of screen you are using. See more in our article on page 22. Find these resources in the e-Book drop-down option at: www.mndassociation.org/careinfo See all of our resources at: www.mndassociation.org/publications or order printed copies from our MND

Connect helpline: 0808 802 6262, mndconnect@mndassociation.org Our information development is accredited through the PIF Tick scheme. This means our resources are evidenced, user tested and reviewed by experts.

Trusted Information Creator

Would you like to help with our information development? We work alongside people with MND or Kennedy’s disease, and their carers, to develop and improve our information. We have lots of work planned in 20212022. If you would like to get involved, you will have opportunities to feed into a range of different content and formats. You can pick and choose which tasks you want to work on and make a difference from the comfort of your own home. To find out more, contact: infofeedback@mndassociation.org www.mndassociation.org

Helping to make personal care easier JOHN O’ GROATS

From Land’s End to John O’Groat’s the blinking hard way! LAND’S END

T took eight months and more than 1.4 million blinks but in July Phil Rossall finally completed his challenge of blinking the length Britain. Phil, who was diagnosed with MND in 2016 and is now unable to move his limbs or breathe for himself, converted the 874-mile distance from Britain’s most southerly point, Land’s End, to John O’Groats, in the very north of Scotland, into blinks helping to raise £1,000 and awareness of MND. “When you are stuck indoors watching all your muscles die, it’s nice to know that you can still do something amazing. I hope it will raise awareness of MND and money for the wonderful MND Association.”

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Phil, a former teacher, is no stranger to a challenge having broken the Guinness World Record for the full marathon push alongside his friend and former colleague Marcus Green in December 2019. He has also blinked his way up the Three Peaks and Mount Everest, and written a book called Motor neurone disease: The fun bits. Phil explained: “I did it to cheer people up. When you are stuck indoors watching all your muscles die, it’s nice to know that you can still do something amazing. I hope it will raise awareness of MND and money for the wonderful MND Association. It’s a bit late for me, but we must find a cure, which is why I am matching funds for the next £1,000 raised. If an ex-teacher like me can dig deep, we all can make a contribution,

however small.” Regional fundraiser Russell Spivey said: “I’m honoured to support many people raising funds for the MND Association in my role, but Phil is blinking amazing. “The courage and humility he shows in fighting this disease with everything he’s got is so inspirational, and no doubt motivates many people to do the best that they can in the battle to see ‘a world free from MND.’ “Phil has broken marathon records and climbed the highest peaks but 1.4 million blinks while facing the ravages of MND, always with a smile, good humour and the support of his wife Brenda, is absolutely remarkable.” To read more or to donate please visit https://www.justgiving.com/ fundraising/phil-rossall3

Let’s keep on talking about communications aids

AKING sure people living with MND have timely access to the communication aids they need has been a key priority throughout the pandemic. While many face-to-face appointments have been cancelled, assessments have continued to take place online and via phone calls, making appointments more efficient and, in some cases, leading to quicker outcomes. Access to Augmentative and Alternative Communication (AAC) and Environmental Controls (EC) has continued to improve in recent years, thanks to the work of a group of people living with MND, including Liam Dwyer, who has worked alongside the Association and NHS England to ensure people living with MND get access to the support they need when they need it. Liam explained: “Matthew Hollis from the MND Association and Carolyn Young and Cathy Edwards from NHS England are like little beavers working away in the background. Was it not for the support these three people have had from NHS England and the MND Association, the service would not be what it is today. There is always more that can be done so we continue to work closely alongside professional colleagues to ensure people living with MND like myself get the right equipment at the right time.” There are 17 dedicated specialist centres in locations across England, Wales and Northern Ireland which are an important contact for people living with MND. The Association receives regular updates from the specialist centres, which shows average waiting

times for assessments right through to the provision of communication aids. · In England, all of the specialist centre contact details are available at www.assistivetechnology.org.uk · In Wales, the specialist centre contact details are available at https://cavuhb.nhs.wales/our-services/artificial-limb-andappliance-service/electronic-assistive-technology-service/ · In Northern Ireland, the specialist centre contact details are available at www.communicationmatters.org.uk/ assessment_service/communication-advice-centre/ “There is always more that can be done so we continue to work closely alongside professional colleagues to ensure people living with MND like myself get the right equipment at the right time.”

If you are unable to access the links above, please call our MND Connect helpline for free on 0808 802 6262. For more information about communication aids and the support available from the MND Association visit www.mndassociation.org/communicationaids If you find that you do not meet the criteria of the specialist centres and are struggling to be provided with a communication aid through your local or community NHS service, please let us know by emailing communicationaids@mndassociation.org or calling MND Connect on 0808 802 6262.

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Remembering our former trustee and friend, Dr Andy Fowell

NDY Fowell, a former MND Association trustee and active supporter and fundraiser, has

died. Dr Fowell, who was a retired palliative care consultant, died in an accident on 25 September. He was married to Anne and had two children, Rachel and Richard. In March 2019, Dr Fowell was among the cyclists who took part in a mammoth eight-week cycle challenge from Asia to Anglesey to raise money for the MND Association and St David’s Hospice in Llandudno. The challenge took Dr Fowell and his friends, Steve MacVicar and Roger Thomas from Istanbul in Turkey to Anglesey, raising a total of £25,000.

Dr Fowell was elected to the Association’s Board of Trustees in 2013 and served until July 2016. He was also instrumental in both setting up and developing Advance Care Planning in Wales and in establishing the North Wales MND Service. Richard Coleman, Chair of the Association’s Board of Trustees, said: “Andy was a great colleague and made much-valued contributions to the Board and to the Care Committee, to which he was co-opted after he stood down as a trustee. His experience and depth of knowledge, coupled with empathy and compassion, always added significantly to our discussions. The thoughts of the whole Association are with Andy’s family

Dr Andy Fowell

and friends at this very difficult time.” In a statement, Dr Fowell’s family described him as a ‘passionate cyclist’ who would be ‘sorely missed.’

Author Helen is starting a new chapter

N author who is living with MND is hoping to use her skills to raise money for MND research. Helen Brunton was diagnosed with MND 11 years ago, just days after her mother died from the same devastating disease. Since then, Helen has volunteered to be involved in clinical trials and wants to use her own experiences to help raise awareness of MND and support others. She explained: “11 years ago I watched my Mum quickly deteriorate and die from MND while suspecting for some time that I had the illness too. For months before my Mum even became ill I was struggling to walk and even though I suspected I had MND my neurologist was telling me I didn’t - this was the worst time for me, the not knowing! I eventually asked to

be referred to an MND specialist and within minutes of hearing my story and examining me he told me it more than probably was the illness. I was diagnosed officially in early 2011.

Author Helen Brunton

“My passion has always been art, but I struggle holding a brush or a pen so I decided to use my one strong digit to write a book on my iPad. It just flows out of me, I love writing. I’ve now published two books, All Yellow and Gorfen Letch, but the third in the trilogy is the one I really want to write. The main character has MND as I want people to understand more about the day-to-day reality of living with the condition and the problems we encounter. “I want to remain independent as long as I can. It might take me an hour to do a ten-minute job, but I usually get there in the end and then I go out and enjoy the bird song and the fresh air - the simple things in life are always the best.” Helen’s books, which are helping to raise money for the Association, are available to buy on Amazon.

We’re caring for our carers

HE Association has launched a new project to look closely at the needs of unpaid carers. We’re encouraging people who provide unpaid care to share their thoughts, views and experiences by being interviewed, attending a virtual focus group or completing a survey.

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As a result of the project, we hope to campaign on the issues that matter most to unpaid carers and ensure the Association continues to offer the right support. More information about how to get involved will be available soon at www.mndassociation.org/support-andinformation/for-carers/

Autumn fundraisers are up and running!

Kate Hills, who took part in the Brighton Marathon, pictured with her daughter Rose, who took part in The Mini Mile

T has been a busy autumn for our incredible #TeamMND runners who have taken part in events including the Great North Run, Brighton Marathon and London Marathon to raise money for the MND Association. The Vitality Big Half was the first mass running event of the #TeamMND calendar, with 27 runners covering the 13.1-mile route through London on 22 August. The Association’s Senior Policy Adviser, Daniel Vincent, took part with his brother Josh in memory of their Grandad Alan who had MND. Daniel said “Our Grandad was diagnosed with MND in the February 2001 and died in June the same year, so his progression was quick. I remember him slurring his words and eventually not really being able to understand what he was saying. “He was a jolly man who loved us very much – the idea of not seeing us grow up was definitely one of the things he found hardest.” Together they raised over £1,700. #TeamMND was represented in the Great North Run, in Newcastle and the

Brighton Marathon which both took place on 12 September. Dr Tony Gill completed the Great North Run alongside his daughter Becky, 40 years after he ran the very first event. He said: “It was a unique experience to take part in the 40th Great North Run with my daughter, and an honour to be on the start line with her. Forty years ago I finished 43rd and have run many since. Having raised more than £1,000, it was definitely worth all the aches and pains!” While 244 of our runners were pounding the streets of Newcastle, 350 miles south in Brighton our 70-strong team were facing a very warm marathon in the seaside city. Kate Hills, who has never taken part in a running event before, signed up to take part just six weeks before the event. She said: “I just wanted to do something that would shock people, something they wouldn’t expect. So I thought I’d do a marathon! Mum was finally diagnosed with MND nearly a year ago. She is now mostly in a wheelchair, has nearly lost the ability to speak and can only eat pureed food. It is such a cruel disease, I

wanted to do something to fight back.” Kate’s plan to surprise her friends and family with her fundraising challenge certainly worked - she raised almost £2,000, smashing her £500 target. Sunday 3 October saw the return of the most iconic of all running events, the long-awaited 2021 Virgin Money London Marathon. MND Association patron Kevin Sinfield OBE led our team of 200 runners in the mass race, along with 81 people who took part virtually across the UK. Kevin said “I’ve seen first-hand the devastating effect an MND diagnosis has on a family. Like others taking part for #TeamMND I’m dedicated to making sure families in future don’t have to go through that heartbreak. I firmly believe a cure for this cruel disease can be found and until that day we need to make sure those affected have the support they need.” Feeling inspired? Why not make 2022 the year you join #TeamMND? For more details about all the running events available visit www.mndassociation.org/running www.mndassociation.org

Teresa May, Rachel Goddard, and her sister Naomi Storeton-West and Julie Leyland who all took part in Mission 5000 during August

Supporters accept our epic fundraising mission M ORE than 270 supporters accepted our fundraising mission – to join together to cover 5,000 miles in any way possible to help raise money to support people living and affected by MND. Throughout August, our incredible team of fundraisers came up with all sorts of ways to add miles to the combined 5,000 target – one mile for every person living with MND in the UK. Together they clocked up 19,749 miles and raised £63,789. 50-year-old Julie Leyland was one of a number of people living with MND who took part. She was diagnosed with primary lateral sclerosis (PLS) in December 2019, four years after first experiencing symptoms. She explained: “It now affects my upper limbs, speech, swallowing, my motor skills and reflexes. I have spasticity (stiffness) in my muscles, but I don’t have any muscle wastage. If you saw me sitting down you wouldn’t guess there was anything wrong with me, that is until I speak or go to walk. “Developing a degenerative condition like PLS has meant that my whole social life and personal life has changed. I used to be someone who actively organised social events with friends,

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through walking, holidays or breaks away. However, when Covid hit, my relationship broke down and I found I was facing this alone but with the support of a very good friend.” Julie set herself the target of covering 100 miles, all on her static bike. She said: “My condition affects my balance, and I am unable to ride a bike outside, so indoors it is! This challenge has meant that I can give something back to the MND Association for the support I have received from them. From asking for advice, funding towards equipment and benefits advice, it has made me feel like I can chat to people who really understand and that I am not alone. The work they do is invaluable. “It’s very easy to sit down and mope about the losses which will become more as time goes by, rather than appreciate what I can still do right here and now. So, as long as I can sit on a stationary bike and push my legs to move, then I will do.” Some Mission 5000 participants chose to walk their miles, including Teresa May who took part in memory of her wife Lynn who died from MND. Teresa set herself an ambitious target to walk 300 miles during the month and raise £5,000. Before the challenge she

said: “I’ve had five knee operations along with a hip replacement, so to walk a minimum of 10 miles every single day in August will be harder than the 55-mile cycling challenge I completed from London to Brighton in 2018. l’m hoping all this walking doesn’t reduce me from 5ft 2 to 4ft 11!” With support from friends and family, Teresa has helped to raise more than £12,000 for the Association in Lynn’s memory by organising a series of fundraising events. Like Teresa, Rachel Goddard walked her miles, setting herself a target of 66, in memory of her mum. She said: “Mum would have been 66 this year so every mile means something to us as a family. I am hoping to raise money to help fund equipment to support people living with MND and to help find a cure. Although Mum isn’t here to be involved in the challenge, I know she is right behind me. I miss her every day.” Have you caught up with the Association’s MND Matters podcast? In Episode 2, our hosts Steph and Nick speak with Megan Donoher who took part in Mission 5000. Listen now by visiting www.mndassociation.org/ podcast

‘Dad’s tribute page makes me feel close to him’ W HEN Jasleen Cheema’s father Harmesh died from MND last October, she was determined to do everything possible to remember him and keep his memory alive. Jasleen and her family decided the best way to do that would be by setting up an MND Association Tribute Fund, enabling them to share precious memories of Harmesh while supporting the Association at the same time. She explained: “Dad’s tribute page brings a lot of comfort for me and my family and it’s somewhere I go to feel close to him. Being able to use the page in so many ways is wonderful. I lit the Christmas candle and thought it was a lovely sentiment during the festive period.” Jessica Macdonald’s Dad Jim died from MND and her family set up a Tribute Fund in his memory during the pandemic. Since then, her family and friends have come together to share lovely thoughts, light candles and leave virtual gifts on the page. Jessica, who lives in New Zealand has also used the page to help raise funds and awareness of MND. She said: “The tribute page is an excellent way to collate memories and fundraising, especially when family, friends, colleagues and well-wishers are so spread out across the globe and were unable to come together for a funeral or wake during Covid-19 restrictions. “After losing Dad so suddenly, putting our efforts into fundraising gave us a new-found purpose. The website itself was so easy to navigate, to personalise and add photos and memories too, and I only wish I’d found the option to make a site earlier.” Every pound you raise in memory of a loved one helps to support people living with MND and ultimately takes us a step closer to finding a cure for a world free from MND. If you’d like

Harmesh, who died from MND in October 2020

more information on Tribute Funds then please contact Emma Fellows or Kavita Parmar at tributefunds@mndassociation.org or 01604 611864. And if you need bereavement support the MND Connect team are just a phone call away on 0808 802 6262. Episode 6 of the Association’s MND Matters podcast features interviews with Matthew and Nathalie, whose fathers both died from MND. To listen visit www.mndassociation.org/ podcast or download from your usual provider.

Association has ‘a big place in people’s hearts’

HE MND Association has been named as the second most loved charity brand in the disability category of a nationwide survey. The report, The Top 100 Most Loved Charity Brands 2021, is based on 60,000 interviews carried out by Savanta’s market intelligence platform BrandVue Charities, a brand, audience and supporter tracking engine. The results recognise and celebrate the most emotively connected brands within the third sector. Overall, the Association claimed 75th place in the Most Loved Charity Brands report. Consumers who ‘love’ the top three charities in each category are five times as likely to have supported them in

the past year compared to people with lower affinity. Those who ‘love’ any of the top three charities have 3.3 times greater understanding of the charities and their cause of mission (73%) compared to those who are more lukewarm towards these charities (22%). MND Association Director of External Affairs Chris James said: “The Association’s high ranking in this survey is testament to the incredible work of everyone in the MND community who works so hard to raise awareness. We are a relatively small charity but because of the passion, dedication and commitment of people with and affected by MND, our supporters, volunteers and staff we have earned a big place in people’s hearts.” www.mndassociation.org

A lifetime of work goes on show to raise funds A

COLLECTION of exquisite paintings and sketches created by artist Dawn Goodson went on show in a special art exhibition held in July. Dawn, who celebrated her 90th birthday in January, organised the exhibition of her lifetime of work to help raise money for the Association’s East Dorset and New Forest Branch in memory of her late husband Brigadier John Goodson, who died from MND. During the event, Dawn, who once took part in a wing-walk to raise money for the Association, sold 30 of the 52 paintings on show, as well as many sketches, drawings and cards. “Altogether, Muttie raised £4,393 but none of it would have happened without the support of her friends, neighbours, family and members of the branch.”

Her daughter, Julie Reid, who is also chair of the East Dorset and New Forest Branch said: “Muttie (Mum) had been due to climb over the Millenium Dome in 2020 with a team of 18 volunteers, but sadly, due to the arrival of the pandemic, it was cancelled so she looked for another way of raising funds. This came in the form of A Retrospective Art Exhibition, which ran from 22 July to 2 August. A raffle was held with some wonderful donations from local companies, friends and branch members. Muttie also donated four signed portraits of Professor Mary Beard, Dame Joan Bakewell, the photographer Rankin and singer Will Young which she painted during the different lockdowns by taking part in Sky Arts Portrait Artist of the Week. “Muttie turned 90 in January and her big Naughty 90th Birthday Party was postponed until August and friends and family donated money instead of buying her presents, raising around £1,395. “Altogether, Muttie raised £4,393 but none of it would have happened without the support of her friends, neighbours,

Artist Dawn Goodson

family and members of the branch, members of Broadstone Art Society, and Poole and East Dorset Art Society who gave permission to use their Gallery Upstairs at Upton Country Park and finally Magna Mazda of Poole who sponsored the event. “I am very proud to be not only her daughter, but also the Chair of the East Dorset and New Forest Branch.” For more information or support visit https://www.mndassociation.org/eastdorset/ or search for @mndedorset on Twitter.

Teeing off for a day of fundraising fun

DAY that started with drizzle became a sunny, fantastic day for the Association’s West Sussex South Branch. The branch’s charity day at Ham Manor Golf Club, on 12 August, began with 144 golfers teeing off in a shotgun start. Once the round of golf was completed, the visitors enjoyed a hog roast and later, there was a shoot-out over the lake onto

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the 18th green for one member of each team. A raffle and charity auction were also held and, overall, £21,000 was raised. Judith Allen, Vice Chair of the West Sussex South Branch, said: “Fundraising is such an important part of our branch as it enables us to support people living with MND in the community. We would like to thank our sponsors and everyone who contributed and helped on the day and made it very special.”

Pictured are the golf day winners, Wayne Sinfield, John Dall, Alex Hudson and Paul Roper with Branch Chair, Maureen O’Neill

Event is a celebration of hope and life Members share

their experiences of MND

EOPLE living with MND were joined by scientists, musicians and poets for a special online event celebrating creativity, hope and life. Hosted by the Euan MacDonald Centre for MND Research, the event, filmed in Edinburgh in August, featured poetry set to music along with contributions from researchers. Among the poets who took part was Ian Lev who is living with Primary Lateral Sclerosis (PLS). Ian was invited to write a poem by organiser, Dr Maria Stavrou, based on his own personal experience of MND. He said: “In my early 20s I used to be the vocalist in a rock band and wrote the lyrics for our own songs - so composing words wasn’t strange to me! Years later I was diagnosed with PLS and after a couple of years I started to post a regular Friday poem on Facebook called Raising awareness of MND. I used to get a few likes from followers and friends, and somebody flagged Maria’s project. I sent

M Poet, Ian Lev, who is living with MND

her an email along with a few of my poems saying I would be interested – the response was positive!” Ian wrote a poem called Why I write, which was set to music and recorded for the event by poet Georgi Gill. Ian said: “I didn’t see the performance until the night of the premiere. I did shed a few tears and I also was very proud. I thought the whole thing flowed very well and the other poems were very good too!” For more poetry written by readers of Thumb Print, turn to page 39.

EMBERS of both Mid Kent Support Groups met with Helen Whately MP in January to share their experiences of what it’s like to live with MND. Speaking via video call, members of the groups were able to explain the challenges of being diagnosed with MND and discuss ways in which the Government might be able to offer more support. Jean Lear from the Mid Kent Support Group described the call as ‘emotional’ but added that she hoped the experience had helped Mrs Whately who is MP for Faversham and Mid Kent and the former Minister for Social Care, understand more about the challenges people living with MND face. For the latest on the #United2End MND campaign turn to page 6 and 7.

hope A gift in your Will could give

of a world free from MND

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

www.mndassociation.org

A summer garden party held in honour of Marian ‘Maz’ Swann raised £22,000

Cheers to that! Summer garden party raises £22,000

SUMMER garden party helped raise an incredible £22,000 to help fight MND. Forresters hair salon group and The Old Boot Inn at Stanford Dingley, near Reading, joined forces on 25 July to host the sparkling event in honour of Marian ‘Maz’ Swann who was recently diagnosed with MND and is a muchloved member of the Forresters team. John Forrester, who founded the salon with his wife Jill 50 years ago, said: “It was a fabulous evening with drinks, delicious food, music, dancing, an auction and raffle.

“It was the first time in 18 months that a group of people could come together to have a wonderful evening and raise money for charity. Maz’s diagnosis has been a shock for everyone but we’re able to do something positive by raising funds for the Association which is helping Maz to live her life to the full.” Andre Claassen and Rebecca James from The Old Boot Inn also have personal experience of MND as Andre’s sister Sharon Budde died from the disease in April. Jane Gilbert, from the Association’s Reading and West Berkshire Branch, said

the evening had been a huge success. She explained: “This amazing generosity will help us improve care and support for local people living with MND, their families and carers.” “Maz’s diagnosis has been a shock for everyone but we’re able to do something positive by raising funds for the Association which is helping Maz to live her life to the full.”

To donate to the charity’s event page visit: https://localgiving.org/appeal/ forresters/

The perfect tee for MND

ERE’S Kate Inchley, chair of the Northamptonshire Branch of the Association teeing off for her own 7 in 7 Challenge. Inspired by MND Association patron, Kevin Sinfield MBE, Kate played seven rounds of golf in seven days in May, raising £1,371 for the Northamptonshire Branch. She said: “On the first day it was cold, but the sunshine came out on the last day!”

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Thank you

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. A diamond fundraiser: Janette Wilde got creative during lockdown when she started creating pieces of diamond art. The greatgrandmother who was diagnosed with MND in July 2019, is no longer able to produce the art due to reduced mobility in her arms, but managed to raise an amazing £1,080 with an online auction of her work.

£7,000 In memory of Anne: The fifth annual Anne Walker Memorial Shield fishing competition took place on 25 July. After postponing last year due to the pandemic, Graham Walker and his team were back, fishing for funds. They raised an amazing £7,000 to support local branches and groups in memory of Graham’s wife Anne, who died from MND. They were joined by keen fisherman and Leeds Rhinos coach Jamie Jones Buchanan who took part to support the West Yorkshire Branch and also presented the prizes at the post-event barbecue.

£1,300

£2,050 Reaching for the skies: Danielle and her cousin Mandy bravely took part in a 15,000ft sky dive in memory of her dad, Andy, who died just six weeks after his diagnosis. Despite Mandy having never been on a plane before they completed the sky dive together and raised £2,050.

Charlie’s ultimate challenge: Inspired by his favourite player Rob Burrow, Leeds Rhinos fan Charlie took on the Wainwright Coast to Coast Challenge starting in St Bee’s in Cumbria and finishing in Robin Hood’s Bay in North Yorkshire. The challenge took 10 days and Charlie walked the 192-mile route, including 800 metres of ascent, navigating the route himself and carrying his own kit. Charlie said: “When I saw the fundraising efforts from lots of other fans and Rob’s team mates I knew I wanted to get involved and be a part of that team raising money for the MND Association.” Charlie has raised more than £1,300 so far.

£3,036

£7,778

£1,080

On top of the world: Sherrie walked 30.4 miles up and down the hills around Builth Wells, reaching 6 Trig Point, and ascending the combined height of Ben Nevis and Scafell Pike in memory of her Nan and a close friend. Sherrie says: “Having witnessed how cruel this disease is and seeing the support that the MND Association gives to families, I wanted to do my bit to ensure that families continue to be supported.” Sherrie raised an amazing £3,036.

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Thank you ‘For Dad’: Katie Dowson walked an incredible 174 miles over just 10 days to raise £3,413 in memory of her dad Warren who had MND. Katie, who dubbed her challenge the ‘Northern Pilgrimage’ said: “I like to do a challenge every year in memory of my dad. It’s so important to me that it’s a fitting tribute to him, and designing my own challenge was a way to really personalise my fundraising event in his memory.”

£3,413

£1,820 Making a difference: Catherine Brogan ran her first marathon virtually after the Bolton Marathon was cancelled. She raised £1,820 in memory of her mum and said: “The MND Association gave a lot of support to our family including emotional support but also equipment to make Mum’s life a bit easier. I hope the money that I have raised will help other families that are suffering and also research, to hopefully prevent people suffering from it in the future.”

£1,285

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The gift of hope: After spending much of the last year shielding due to the pandemic, Moyra Rawcliffe found a special way to celebrate her 70th birthday. The mum-of-two from Yorkshire, who was diagnosed with MND 10 years ago, raised an amazing £1,285 by asking family and friends to donate to the Association rather than buying her birthday presents.

Miles that really matter: Jackie Wilson ran 21 miles in 21 days to raise £4,149 in honour of her daughter Jen who is living with MND. This is the second year Jackie has taken on the Run 21 Challenge to mark MND Global Awareness Day.

£2,600

£4,149

Diving right in: Martin completed his 30 miles in 30 days outdoor swimming challenge in honour of his friend David, who is living with MND. Martin wanted to raise £2,000 and, when he reached the target, he promised to push himself even further by swimming the last 30 metres using butterfly stroke! Martin said: “It has been an incredible experience and I have been honoured to do this in the name of our friend David.” Martin raised an incredible £2,600.

Thank you Pedal power: Ken Peers and Dave White cycled 218 miles off road along the King Alfred’s Way around Winchester in memory of Dave’s cousin Gill who died from MND. Dave said: “Gill lived with MND for three years but showed tremendous strength, courage and humour to fight back and bring joy to everyone close to her.” Together, Ken and Dave raised more than £4,000.

£4,000

£2,030 Pushing boundaries: Chris took on the gruelling 53-mile Race to the King Ultra Marathon in memory of his father Roger who died from MND 20 years ago. Pictured with his family who were also his support crew, he said: “It was my absolute pleasure to do something to recognise the support given to my father and family in his hour of need. The work the Association does is amazing.” Chris raised £2,030.

£3,455 All roads lead home: Paul decided to raise funds for the MND Association by taking on a cycling challenge in support of his friend Emily who was diagnosed with MND a year ago. He rode 400 miles from Land’s End to his home in Lancaster and raised £3,455. Emily said: “I want to thank my friend Paul who cycled from Penzance to Lancaster to raise money for the Association. It was a tough old bike ride. Thanks to everyone who donated.”

£1,710 United against MND: Brothers Andy and Roy Kinnear conquered the 170-mile Way of the Roses Coast to Coast Challenge. They completed the challenge over two days through atrocious weather in memory of Andy’s father-in-law Ron and a close family friend, Sid, who both died from MND. Together, they raised £1,710.

£2,367

Stadium tour: Student nurse Liz and her dad Gary clocked up 180 miles of walking in just five days to visit all of the UK super league stadiums. The rugby-mad pair have so far raised £2,367 for people with MND after being inspired by former rugby league star Rob Burrow, who is living with MND.

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

Making sense of MND W

E sadly lost Mum to MND in May, and as a family we are coming to terms with what that loss means. My mum’s husband, Phil, has written a few words which I wanted to share. Mum used to read through Thumb Print to try and understand what she was facing. Suzanne Taylor

You don’t understand While suffering from the effects of MND, my wife Pauline once said to me while she could still talk a little, ‘You do not understand,’ and she was right, I really didn’t understand. “I didn’t understand what it was like to be told you only have two to five years to live. “I didn’t understand what it was like to see someone eating a nice meal knowing you can’t have what they are having because you can’t eat anything anymore and enjoy the taste of the food because you have to be fed through a tube in your stomach because of MND. “I didn’t understand what it was like trying to speak with someone and then having to write it down on a board because you can’t form the words you want to use. “I didn’t understand what was happening to my wife from one day to the next. As the disease progressed, it became harder to look after my wife and from the lack of sleep there were days when I would get annoyed and frustrated at things that were happening which

Pauline Tattersfield, with her husband, Phil

she had no control over. Towards the end, she lost control of all her faculties and what little dignity she had left. Somehow you do not really realise this is all part of MND. “So just be kind and try not to get annoyed with them, and shout at them. They cannot help it, it is MND. When they manage to say sorry believe them, give them a hug and say I am sorry too, and just try to do your best for them because they did not stop loving you when they got MND. “As my wife’s condition deteriorated, she could only communicate by writing on a board and towards the end she was not able to communicate at all. “There were times when my wife would look at me as if she were looking

straight through me and there was a look of fear in her eyes. She would grip my hand so hard and not let go so I just stayed. I would just sit with her and tell her I still loved her until the fear subsided. “You see my wife was right in what she said, I didn’t understand, and I still don’t, and I don’t suppose I ever will, but I do know that MND is like a fingerprint - it affects each person differently. “I lost Pauline, my lovely little lassie, on 26 May 2021 to this terrible disease and I hope that by writing this it will help others whot are looking after someone with MND maybe understand a little better.” Phil Tattersfield, husband of the late Pauline Tattersfield

In the summer edition of Thumb Print we featured an article which included information about Motability. To check if you are eligible for Motability you can visit their website at www.motability.co.uk or call the Association’s free helpline MND Connect on 0808 802 6262. 38

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About us

Remembering Jennifer

ENNIFER Clayton, sadly died from MND during lockdown and since then her family has raised £12,000 for the Association. Jennifer wrote the following poem in her final weeks and her family has asked for it to be published in Thumb Print in her memory.

A Day in the Week by Jenn Clayton I lie here in my bed each day wondering what to do Have a look at my iPad, lap-top or just simply have a brew Gazing out of the window, I watch large white clouds drifting by I can also watch different breeds of birds soaring high in the sky I hear the roar of engines, surely it can only be a plane I wonder, is it going far afield or just hopping over to Spain I see vapour trails criss-cross high against a sky of blue If the sun is shining on them, high planes come into view Bringing my eyes downwards, I see lots of shades of green Trees, willow, bushes plus assorted coloured roses, all can be seen My eyes now drift back into the room, I see some lovely flowers Something to admire and appreciate to pass away the hours Who will call today I wonder, thoughtful family or friends I really hope their cheerful visits never ever come to an end So, in the meantime it’s time to decide ‘what should I do.’ Maybe I have got some funny emails or notes just to view!

Fundraising friends are just getting started!

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ECENTLY I, and around 20 others, completed a 15-mile walk from Eastbourne Pier to Hastings Pier to raise money for the MND Association. We did this as a close friend of ours, Butch, was diagnosed with MND back in March. So far, we have raised more than £6,000 but we are just getting started and have plans for future projects to keep raising more money and awareness!” Emily Vaughan

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

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

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

0808 802 6262 mndconnect@mndassociation.org Membership 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

Emily and her friends at the start of the walk

Butch, who has recently been diagnosed with MND, pictured with his wife, Linda

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

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