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NEWS FROM THE MND ASSOCIATION COMMUNITY

SUMMER 2022

£1m for major research partnership Collaboration seeks treatments in ‘years not decades’

THUMB PRINT SUMMER 2022

MND research an important time IN THIS ISSUE:

For mND

PAGE 7 MBE Honours for Spennylympians Stuart Bates and Charlotte Nichols to receive MBEs

PAGE 14 ‘You’re never too ill to do something amazing’ Phil Rossall explains more about his new video blog

PAGES 38 AND 39 Your letters A selection of letters from readers of Thumb Print

GAZE COMPATIBLE

Front cover shows Nicola Waters who is living with MND and her two sons. Her portrait is part of a virtual exhibition featuring people living with MND, by award-winning photographer Richard Cannon. Read more on page 5.

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: Telephone 01604 250505 Email editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/ thumbprint The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2022.

With awareness of MND higher than ever, and the amount we know about the disease growing all the time, there has never been a more important time to invest in MND research. For more than 40 years the MND Association has been at the forefront of the global fight against MND, working with partners all over the world to drive progress. The time has now come to harness this growing wave of momentum and use it to power the development of effective new treatments for MND. On 21 June, Global MND Awareness Day, the MND Association announced that, together with our partners at medical research charity LifeArc, MND Scotland and My Name’5 Doddie Foundation, the Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR), it will be contributing £1 million towards a £4.25 million programme to kick-start a new collaborative effort to end MND. We want to make it easier for researchers to work more closely with people living with MND, to enable them to develop more efficient clinical trials and ensure that MND becomes a disease that is treatable and ultimately curable. Our continued investment in this vital research is only possible thanks to the strength of our MND community and your continued support. Together, we will beat MND.

Sally Light Chief Executive

, part of the

family

THUMB PRINT SPRING 2022

£4.25m investment into MND research announced on Global MND Awareness Day

Visitors flock to online portrait exhibition A special photography exhibition, which opened its virtual doors on Global MND Awareness Day showcased 16 people living with MND and their carers to raise awareness of the disease.

We now have a much better understanding of MND, so we must take this opportunity to accelerate development of new treatments and work together to move this knowledge into the clinic and help people affected by this devastating disease.

A new £4.25 million partnership which aims to discover meaningful treatments for MND in ‘years, not decades’ was announced to coincide with Global MND Awareness Day on 21 June. Researchers from six universities across the UK have been awarded the funding to kick-start collaborative efforts to end MND. Generous donations from supporters to Kevin Sinfield’s Extra Mile Challenge has meant the MND Association has been able to contribute £1 million to the MND Collaborative Partnership. Other funders to the partnership are charities LifeArc, MND Scotland and My Name’5 Doddie Foundation and government bodies Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR). Nicola Waters, who is living with MND (also featured on the front cover), said: “Donations and the work of charities like the MND Association have brought us to the brink of a cure for this terrible disease.” It is hoped the Partnership will provide a launchpad for further collaborative investments into MND research, including the £50 million committed by the Government in November 2021 as a result of the United to End MND campaign. Dr Brian Dickie, Director of Research Development at the MND Association, said: “Collaboration is crucial to success. We are delighted that leading scientific minds across the UK have the opportunity to combine their expertise, supported by the joined-

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It has been an emotional project but one I knew I needed to do to help raise awareness of this terrible disease. Award-winning photographer Richard Cannon started the project more than two years ago to highlight that MND can affect anyone, from any background, and that the disease progresses differently for each person.

There are two creative concepts behind Richard’s work – in the first picture you will see the person living with MND looking at their loved one, who are standing out of shot, and in the second image you will see the person’s primary carer(s) alongside them. Richard said: “It has been an emotional project but one I knew I needed to do to help raise awareness of this terrible disease. What struck me at each photoshoot is the strength of the relationship between each person and their carer – in nearly all of the shoots these have been family members who probably wouldn’t ever even use the term ‘carer’ to describe themselves but are simply doing what they do for their relative out of love as someone’s partner, child or parent. I have found it a real privilege to meet them all and to have been welcomed into their home.” You can see Richard’s exhibition at: www.mndassociation.org/exhibition

Expert speech and language therapy for all aspects of MND, including voice banking, communication support and swallowing. Prof. Ammar Al-Chalabi

Dr Brian Dickie

up funding from multiple organisations, in the common aim of understanding, treating and ultimately defeating MND.” Prof. Ammar Al-Chalabi, Co-Director of the research programme and Professor of Neurology and Complex Disease Genetics at King’s College London, said: “Our goal is to discover meaningful MND treatments within years, not decades. This landmark funding will bring the UK’s major MND research centres together for the first time in a co-ordinated national effort to find a cure. We now have a much better understanding of MND, so we must take this opportunity to accelerate development of new treatments and work together to move this knowledge into the clinic and help people affected by this devastating disease.”

With over 20 years experience in adult neurological conditions, services range from one off advice to regular input. Home visits or video call appointments available. Email: jbensonspeechtherapy@outlook.com Telephone: 07850 634483 https://jbensonspeechtherapy.co.uk/ www.facebook.com/JBensonSLT twitter.com/JBSLT

THUMB PRINT SUMMER 2022

Couple completes 106 marathons in 106 days

for causes close to their hearts A couple from Scotland have completed 106 marathons in 106 days to raise money for two charities close to their hearts. Fay Cunningham and Emma Petrie, who are both personal trainers from Aberdeenshire, share a love of fitness and the great outdoors. They hope to raise more than £100,000 for the MND Association and Macmillan Cancer Support, in memory of Fay’s father, Alan, who died from MND and Emma’s mum, Jan, who died from cancer. Speaking during the challenge, Fay said: “It is all a bit surreal really, we can’t get our heads around the fact we have been running a marathon every day since the 19 February, but we are certainly looking forward to a rest day. “We’re both very much aware of how short life can be and the ability to run or

walk doesn’t always stay with you forever. Before our parents’ respective illnesses, they were fit, active people and were instrumental in who we are today. “There have been two unverified attempts on the world record for the most consecutive marathons run by a female so we decided to ensure we would break the record by adding six more marathons to get to 106 marathons in 106 days. At first, we couldn’t get our head around doing any more than 100 but once we had the time to think about it, we have seen it as a huge positive to hit 100 marathons and to keep going. We wanted to inspire people to do something big and this just makes our challenge even bigger.” Emma said: “This journey has taught us that the body is incredible and our message of ‘do it while you can’ helped

This journey has taught us that the body is incredible and our message of ‘do it while you can’ helped us push through each day.

Fay Cunningham and Emma Petrie who have run 106 marathons in 106 days for the MND Association and Macmillan Cancer Support

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us push through each day knowing we have the opportunity to do this. “One of the most incredible parts of this whole challenge has been having the time to chat to people and pass the miles together, it really is a team effort, and the support has been unbelievable.” MND Association Regional Fundraiser, Dominic McDonough, said: “Having followed Fay and Em throughout their challenge we have been astounded by their strength and determination. Running a marathon every single day is incredible and they have faced it all with a smile. The money and awareness they have raised will help countless people living with MND and we are so proud of them.” If you would like to donate visit www.collectionpot.com/pot/mmw

MBE Honours for Spennylympians To be awarded an MBE for services to the MND Association is an honour, and we wish that everyone that tirelessly fundraises for the Association could be recognised in the same way.

A couple, who raised more than £155,000 after taking part in every Olympic sport over 17 days, have been awarded MBEs in the Queen’s Birthday Honours. Stuart Bates and Charlotte Nicholls decided to take part in the fundraising challenge during the Tokyo Olympics last summer in memory of Stuart’s brother Spenny, who died from MND ten years earlier. They spent months preparing and training for the challenge, which became known as the Spennylympics, attracting attention from news channels all over the world. News of their honours, for services to the MND Association, was announced during the Platinum Jubilee weekend. They said: “We are shocked and honoured in equal measure to be receiving this recognition. When we embarked on the crazy journey that was the Spennylympics we were just hoping to raise as much money and awareness for the MND Association as possible. We never expected our little idea to capture the imagination of people across the world and to gain the attention that it did. “To be awarded an MBE for services to the MND Association is an honour, and we wish that everyone that tirelessly fundraises for the Association could be recognised in the same way. We would like to thank everyone at the Association and beyond that supported us throughout the challenge, without you we would never have been able to achieve what we did! We will continue to fundraise for the MND Association until there is an end to this cruel disease, so stay tuned to see what we dream up next!” The Association’s Head of Community Fundraising, Denise Davies, said: “I am delighted to hear the news that Charlotte and Stuart have been recognised with very well-deserved MBEs for services to the Association. Thank you so much for your tremendous hard work and the vital awareness you are continuing to raise of MND.”

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THUMB PRINT SUMMER 2022

EnCouRaging

the next generation of MND researchers Nurturing the brightest talent in MND research is critical to helping us achieve our vision of a world free from MND. The MND Association is very proud to support the work of researchers at all levels, from experienced researchers and clinicians to those who are just at the start of their careers. Early Career Researchers (ECRs) can be students who are currently undertaking their PhDs or researchers who have completed their PhD and are building their experience as a postdoctoral researcher. ECRs are not only hugely important in the future of MND research but are also helping to drive forward much of the research that we currently fund, under the supervision of established researchers in the MND field. As an Association, we recognise that supporting the development of ECRs is essential to continuing the current pace of research. Through our research programme we offer two different types of grants to help fund the work of the best and brightest ECRs. Investing in training the next generation of researchers allows us to help to shape their experience in the years to come, contributing to the future of MND research. The Association funds ECRs through PhD studentship grants, which aim to attract, train and retain talented science graduates who have chosen to study MND. These grants allow high calibre students to undertake PhD training in projects focused on MND and develop their laboratory skills whilst being mentored by senior researchers.

This summer we will hold a special workshop-style event for ECRs working in MND. Called MND EnCouRage UK, the gathering will recognise and encourage the work of ECRs who have chosen MND as their area of study and strengthen

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The support from my studentship allows me to fully develop both my technical and personal skills as a scientist, by funding my research, training courses, and allowing me to share my research at events such as MND Association EnCouRage. Natalie Pye, PhD student, University of Sheffield

the networks between them and their research peers. At this two-day event, the ECRs will present their work and have the opportunity for informal discussion and to attend interactive talks from established MND researchers and clinicians. These talks are tailored to offer advice and guidance on a range of topics such as career progression, funding their work and building collaborations with other researchers. We hope that new relationships will be formed, collaborations will be fostered, fresh perspectives and further focus will ensue, and all will be inspired to remain in MND research and push even harder in the fight for better understanding of the causes of MND. One of our PhD students, Natalie Pye from the University of Sheffield said: “My MND Association PhD studentship has given me the opportunity to contribute to

research which I hope will help us better understand what causes motor neurone disease. The support from my studentship allows me to fully develop both my technical and personal skills as a scientist, by funding my research, training courses, and allowing me to share my research at events such as MND EnCouRage.” The Association is currently funding 15 PhD studentship projects, based at several different institutions throughout the UK, and six of these will begin this year. These new PhD projects are looking at a range of different topics from investigating the underlying biological mechanisms of the disease to developing a potential gene therapy and new diagnostic method for MND. To find out more about the research we are funding, please visit www. mndassociation.org/research-we-fund

Success for Act to Adapt campaign MND has been mentioned for the first time in guidance issued to local councils about Disabled Facilities Grants (DFG). Following the continued success of the Association’s Act to Adapt campaign, the Government has issued new guidance to local councils about the grants, specifically mentioning MND and including recommendations highlighted in the campaign. For people living with MND it will mean that support for adaptations is fast-tracked and the need for financial assessments for adaptations costing less than £5,000 is removed completely. The Association will now continue to engage with local authorities, particularly

those who have been identified as most in need of improvement, based on the two core campaign aims, combined with significant underspend of their DFG budget. We aim to bring together local people who understand the existing dynamics, challenges and political relationships so that we are campaigning in a way that is relevant, evidence-based and community-led.

SCAN ME

For more information about the campaign, and the ways you can get involved, visit the Act to Adapt Hub at www.mndassociation.org/acttoadapt or scan the QR code above using your phone

Coming together

to drive forward the fight against MND Registration for the 33rd International Symposium on ALS/MND is now open. Between December 6 and 9, researchers, clinicians, and healthcare professionals from around the world will come together with one key aim – to drive forward research and care in the fight against MND. The Symposium offers researchers the opportunity to exchange knowledge, foster new collaborations and showcase the most exciting developments in MND research. Following the success of the last two virtual Symposia, and the on-going challenges caused by the global pandemic, the event will be once again held online. Over the course of four days, delegates can expect platform presentations from MND research experts, live Q&As, poster sessions and much more. Registration is live and costs £60 to attend. For more information, visit our website: https://symposium.mndassociation.org

The MND Association’s Chief Executive, Sally Light and leading MND expert Professor, Ammar Al-Chalabi pictured at last year’s Symposium

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Raising awareness of MND at the heart of Westminster It’s 20 years since the All-Party Parliamentary Group on MND (APPG) was formed to help raise awareness of MND in Parliament. Since then, this cross-party group of 130 MPs, supported by the MND Association which provides the secretariat, has helped to campaign for better access to high quality support and services for people living with MND and their families. The group is made up of 11 officers including Northampton South MP, Andrew Lewer MBE, who was elected Chair in 2019. Over the past 20 years, the chairmanship has changed hands several times, with former MP Mark Todd being the first to hold the position, followed by Sir Gavin Williamson MP and, more recently, former MP Madeleine Moon whose husband died from MND. Mark Todd said: “I was very proud to help to establish the APPG on MND in 2002 and be the initial parliamentary lead. The group was instrumental in helping to raise awareness of the disease in Parliament, from questions to ministers, meetings and debate participation, to hearings on specific topics. It worked through members contacting their MPs and asking them to take an interest, in the same way as my first contact with the Association stemmed from a contact from a Derby resident living with MND. “There is a misconception that MND is a rare disease; something that’s unlikely to affect you or the people you love. But in my conversations with other Parliamentarians, it was eye-opening to see just how many of them had a personal

connection to the illness – whether it was through a family member, friend, or former colleague. The APPG has grown tremendously over the past 20 years, and I look forward to seeing what else the group will achieve in the years to come.” In 2011, the APPG on MND held its first inquiry into specialist palliative care for people with MND in England. Four evidence sessions were held in Westminster where the group heard from people living with MND, carers, health professionals and hospices.

The group was instrumental in helping to raise awareness of the disease in Parliament, from questions to ministers, meetings and debate participation, to hearings on specific topics. The inquiry found that access to services is patchy, services are fragmented, and funding is under pressure. The group published recommendations to ensure everyone with MND has access to timely and high-quality palliative care. Subsequently, the group held two further inquiries: the first on access to communication equipment and the second on claiming and receiving Personal Independence Payment. More recently, the group has championed the Association’s campaigns in Parliament, including Scrap 6 Months, Act to Adapt and United to End MND. All three campaigns have had considerable success, and the APPG has played a key role in providing an extra vehicle with

The current Chair of the APPG, Andrew Lewer MP, pictured right, with campaigners on the steps of Downing Street as part of the United To End MND campaign

which to gain Government support. Former Chair Madeleine Moon was a passionate advocate of Scrap 6 Months in Parliament, using mechanisms such as Parliamentary questions, debates, and a private members’ bill to pave the way for reform of fast-track access to benefits, known as the Special Rules for Terminal Illness. After years of campaigning by the Association and Marie Curie, MPs and our brilliant supporters, the Government expanded access to two out of the five fast-track benefits for people with 12 months or less to live and recently announced a bill to make a similar change to the three remaining benefits. Last September, Andrew Lewer MP joined Rob Burrow and other people living with MND to hand in a patient letter to 10 Downing Street calling on the Government to invest in targeted MND research. Andrew’s support for the MND community has been unwavering and he has held several APPG meetings with a focus on research, providing leading scientists with a platform to make the case for increased investment to audiences of up to 53 MPs and Peers. The Government’s announcement last November to invest £50 million in MND research is in part thanks to the phenomenal support United to End MND has received in Parliament. With the money yet to be allocated, the group will continue to have a razor-sharp focus on research funding to ensure the Government delivers on its commitment to the MND community. To find out more about the work of the APPG on MND search for @APPGonMND on Twitter.

With your support we will keep our Promises

As I begin my tenure as Chair of the Board of Trustees for the MND Association, I am well aware of the challenges which lie ahead and of the need to deliver better access to care and continued investment in cutting edge research. Since joining the MND Association last year, I have had the great privilege of getting to know many people living with MND and their families and to witness, first-hand, the excellent work the Association is doing right across England, Wales and Northern Ireland. There is no doubt that in recent years the support the Association has been able to offer people affected by this devastating disease has continued to grow and develop. I would like to pay a heartfelt tribute to the Association’s previous Chair, Richard Coleman, the trustees, directors and the wider MND community for their hard work and dedication in what have been extremely challenging times. The Promises our Association has made to people living with MND could not be clearer. We will not rest until: • MND is treatable and ultimately curable • Everyone gets the care they need when they need it • Every day with MND counts • You are heard • No-one faces MND alone. With the support of our community behind us we will keep our Promises – people living with MND and their families are counting on us.

Dr Usman Khan

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Legacy gifts help investment into MND research A generous legacy gift has allowed the MND Association to fund two exciting research grants in London and Sheffield. The projects will aim to understand the causes of MND and focus in on the biochemical processes involved in the disease to provide a starting point for the development of new treatments. Dr Nicol Birsa, who is based at University College London as a senior non-clinical fellow, will be studying the reduction in the ability of cells to produce protein. She explained: “I’ve always been interested in the mechanisms of disease and how proteins are made and transported. This is pivotal in understanding MND.” To maintain health and functionality, motor neurons need to respond to changes, and the production of new proteins is an important step in this response. Nicol’s project aims to understand how the disruptions to protein production alter the function of nerve cells and their connection to muscles. Once it is understood how nerve cells are

damaged, the project will move on to investigating if it is possible to correct this damage. She said: “Researchers know more than ever about MND but we still don’t yet know enough, so understanding the changes to nerve cells in MND is crucial to designing new and effective treatments. I am very excited by the prospect of seeing what we discover in the lab being brought to patients and the difference it can make in the future”. Research has shown that MND doesn’t just affect motor neurons, but also other parts of the brain which control our ability to think, interact and formulate words. One of these regions is called the striatum. Studies into the role of the striatum have indicated that, when damaged, it may contribute to the cognitive impairments commonly seen in people with MND and related frontotemporal dementia (FTD). Dr Matthew Livesey from the Sheffield Institute for Translational Neuroscience (SITraN) will use samples from people living with a common genetic form of

Legacy Events Tuesday 6 September ‘Make a Will’ virtual information event Hear from Christopher Berry of Berry’s Solicitors about the importance of writing a Will, where to start planning and things to think about. He will also cover Power of Attorney. We are also joined by Richard Miller, from the Free Wills Network. Richard will be explaining how the Association works with the Free Wills Network and how you can benefit. Thursday 6 October Virtual Legacy Event (South) This legacy event will aim to give attendees an update on the great work happening in the south of the country. As well as hearing from Nicol Birsa we will be joined by researcher Gareth Wright, University of Essex. You can also hear from MND Care Co-ordinators Vicky Lester and Katherine Smith, who were funded by a generous legacy to the East Sussex Branch. Tuesday 8 November Virtual Legacy Event (North) This legacy event will aim to give attendees an update on the great work happening in the north of the country. As well as hearing from Matthew Livesey, we will be joined by MND key worker Liz Steer, who was funded by a generous legacy to the Wirral Group. Dr Nicol Birsa

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MND-FTD (C9orf72) to grow striatum nerve cells in the lab. The function of these cells will be measured using sophisticated electronics and then compared to healthy cells to see if there is a difference. The work will pinpoint functional impairment in MND nerve cells which may lead to strategies to come up with new therapies to target this brain region in MND. He said: “I’m very grateful to the generous supporters of the Association who leave gifts in their Wills to help fund future MND research. This research is looking at a completely new area to study in MND, a different part of the brain, which is often overlooked, and it wouldn’t be possible without this support. Functional impairments are understudied but they could be targeted pharmacologically to slow disease progression”. You can hear Nicol and Matthew speaking about their work at our legacy events this autumn. Visit www.mndassociation/legacyevents for more information.

MND Register A new phase begins We are looking forward to the next stage of the MND Register which will see it act as a way to link different research studies and include information directly from patients using an app. People living with MND will be automatically included on the MND Register as part of a new phase in the register’s development. People who are diagnosed with MND will now be added to the register unless they specifically choose to opt-out. It is hoped this important change will help the register to grow and enable researchers to learn even more about the disease. More than 4,000 people living with MND from 41 different centres are currently included in the register which is a joint project between King’s College London and the University of Oxford. The aim of the project is to capture information about people living with MND in England, Wales and Northern Ireland to help researchers identify possible trends and plan care services. Automatic inclusion will allow even more data to be captured over the next two years. Professor Ammar Al-Chalabi from King’s College London said: “We are looking forward to the next stage of the MND Register which will see it act as a way to link different research studies and include information directly from patients using an app.” Researchers are also planning to link anonymous data from the register with data from other research studies which will lead to new insights which were

not possible when the data was initially collected. This type of data linking has happened in the past when researchers combined clinical trial results with the genetic data of participants. The analysis showed that lithium carbonate might slow down the progression of MND symptoms in some people with a mutation (error) in a gene called UNC13a. As a result, a new international Phase III clinical trial to investigate the effectiveness of lithium carbonate for people with MND with a UNC13a mutation is due to start later this year. Professor Kevin Talbot from the University of Oxford said “The MND Register is now delivering high quality data which will greatly inform our understanding of the MND landscape in the UK. We are now poised to take things to the next level by aligning with other research studies funded by the MND Association.” The MND Register will also play a central part in a MND Collaborative partnership between the MND Association, LifeArc, My Name’5 Doddie Foundation, MND Scotland and government funders, Medical Research Council (MRC) and the National Institute for Health Research (NIHR). A total of £4.25 million has now been committed to this partnership. Together, this work aims to overcome two problems in MND research which are impacting the

speed at which effective MND treatments can be developed. The first is that it is difficult to measure how MND affects different people. The second is that unlike in cancer, we cannot biopsy the problem area in someone with MND, which means we need greater access to models of MND in order to test specific treatments. Linking the above plans for the register with this collaboration will help to address these problems by creating a large database about people with MND, which will contain a wealth of information on the biology of the disease, the impact of where they live and quality of life.

The MND Association would like to say a huge thank you to the Betty Messenger Charitable Foundation and a family trust who wishes to remain anonymous for supporting the first phase of the MND Register. We are delighted that the Betty Messenger Charitable Foundation has recently confirmed a further commitment to the second phase of the project, enabling the MND Association to continue to fund this important work. To find out more about the MND Register, visit www.mndassociation. org/mnd-register THUMB PRINT SUMMER 2022

‘You’re never too ill to do something’

amazing

I want the episodes to encourage people living with MND to get their voices banked and show them that they still have a lot to offer, that you’re never too ill to do something amazing.

Phil Rossall pictured during his Land’s End to John O’Groats challenge from his video blog, Phil No Muscles Rides Again

A popular tour blog has been brought to life in a series of new videos by former teacher and charity worker, Phil Rossall. Phil was diagnosed with MND in 2016 and has been determined to raise awareness of the disease ever since. He has also taken part in two extraordinary fundraising challenges which have seen him break the Guinness World Record for the full and half marathon wheelchair push with his friend Marcus Green and blink the equivalent distance from Land’s End to John O’Groats. But now Phil has decided to create a new video blog called Phil No Muscles Rides Again which takes viewers on a virtual tour around the world and explains more about the reality of MND. Phil explained: “I have been writing a tour blog for the last couple of years, taking my readers around the world to hidden gems – places I feel are special and thought provoking. “I get lots of feedback from my readers, and the series has evolved in line with some of their suggestions. One of these was that I should make them into a series of videos. Given that it is hard enough to produce the written text

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using a single pressure switch with my weakening thumb muscles, I’ve co-opted the assistance of my wife Brenda and our friend Dave Edwards of Northill Video to help with the visuals. “I want the episodes to encourage people living with MND to get their voices banked and show them that they still have a lot to offer, that you’re never too ill to do something amazing. The other motivation is just to cheer people up! With all that’s going on around us, my quirky sense of humour might give people a well-needed laugh or at least a smile! “MND is still not a widely-known illness and since my diagnosis in 2016, I have tried to do my bit to improve that with various projects over the years. I know

how cut off people living with MND can feel. Some of us get frustrated when we’re excluded from conversations, being talked about, not talked to. I am trying to tell loved ones and carers that we are still in here, the same person we have always been. This project has allowed me to speak directly to the world in my own voice and if others get their voices banked as a result, then they too can raise awareness further. Being able to hear my own voice is a great boost to morale, thanks to SpeakUnique. “I am bedbound now so it’s difficult to take part in more physically-demanding projects, but I will keep writing as long as my thumb muscles hold out and keep doing my bit, raising awareness and funds where possible towards finding a cure for MND”. Phil also has important advice for anyone who is newly-diagnosed with MND. He said: “Always have a project on the go and focus on the things you can still do, not on the things you can’t do. Keep positive – this has kept me going for almost six years. And if your voice is still working, get it banked now. You won’t regret it.” To watch Phil’s videos, visit https:// www.youtube.com/channel/UCH5vP_ THUMB PRINT SUMMER 2022

Branches unite for an evening of music and remembrance

‘Six years as a trustee – it’s all been for David’ Jan Warren’s husband David died from MND in 2015, just 131 days after being diagnosed. Driven by her experience, she became a trustee, serving as Vice-Chair until June this year. Here, she explains why raising awareness of MND will always be close to her heart.

#KENTSINGS 2ENDMND David Ward, left, pictured with Elaine Coates from the Mid Kent Branch and Alli Sullivan from the North West Kent Branch

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A musical event to raise awareness and funds for families living with Motor Neurone Disease in Kent, and to celebrate the lives of those lost to the disease. Featuring the Bexleyheath RockChoir. Guest Speakers: • Dave Setters, MND Campaigner • Dr Nick Cole, Head of Research, MNDA

Rochester Cathedral in Kent will be the stunning venue for an evening of music to help raise funds and awareness of MND. All four MND Association branches in Kent have come together to help organise Kent Sings 2 End MND, which will take place at the cathedral on 23 September. As well as helping to raise awareness, the event will offer an opportunity to celebrate the lives of loved ones who have died from MND. It will be a secular event, open to people of all faiths and none. David Ward, Chair of the Mid-Kent branch said: “Kent Sings 2 End MND is a new event, but one which we hope may be held annually. Rochester Cathedral is a lovely venue and we do hope that as many people as possible will come along and join us.” The Bexleyheath Rock Choir will be among those performing during the evening and local dignitaries, including the Lord Lieutenant of Kent, The Lady Colgrain will be joined by guest speakers, David Setters, who is living with MND and the MND Association’s Head of Research, Dr Nick Cole. For more information and to book tickets, visit www.eventbrite.co.uk/e/kent-sings-2-end-mndtickets-316392828467

Friday 23 September 2022 | Rochester Cathedral | 7.30pm - 9.30 pm

Guest of Honour: • Lord-Lieutenant of Kent, The Lady Colgrain

Doors open at 6.30pm. This is a secular event open to people of all faiths and none. Organised by MNDA East Kent, Mid Kent, North West Kent and West Kent.

Scan me to book tickets!

Or, visit https://bit.ly/3jom7PI More info: kentsings2endmnd@gmail.com

www.mndassociation.org

MND Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Registered Charity No 294354

Rochester Cathedral

Design by Katerina Dimnik MWR Ltd

“I was asked by the Association, in my capacity April. The next day they announced it was MND. as Vice-Chair if I would attend the Royal It was a death sentence. Freemasons Ladies White Table Event in London. He faced it with stoicism and bravery but There, I would be presented with a cheque just 131 days later, my husband of 30 years was for their sterling efforts in beaten by MND, and he died. fundraising for us. “I’m not a brave widow, I “I was asked to give a speech. still cry, although now I call In it, I explained the work of our I will still fundraise it ‘washing the lenses of my Association, and how we, our memories.’ For me, I face the and be available branches and groups in Wales, future alone, without the man I at any time to Northern Ireland and England, adored. raise awareness help those living with and “He told me to wake every and support the affected by MND in so many day with a smile on my face ways. I know David and I were - some days are harder than Association and blessed with our Association others. its members. It visitor who became our dear “He said every day is an does, after all, friend and support throughout opportunity to make a new make me feel our MND journey. memory, which I still try to do. closer to David “I spoke about my decision “He also said kindness costs and it truly is all to apply to become a trustee to nothing, but can mean so much. honour my husband David, in “I was incredibly humbled for love. the hope that my accountancy to give that speech and yet background and passion to see enormously proud. I allowed an end to this awful disease, might be enough myself the indulgence of pride, as I felt I had to make a difference. I’ve travelled the country achieved such a lot for David and felt he was delivering talks, raising awareness, fundraising, standing with me. The absolute pinnacle of my attending regional conferences in six years as a trustee. All for David. addition to my trustee work. But it’s I will still fundraise and be been worth it. available at any time to raise “David was a real raconteur – a awareness and support funny, calm, hard-working and the Association and its talented graphic designer. He members. It does, after all, started having problems make me feel closer to walking in February 2015, David and it truly is all by April it was obvious for love.” it was more serious A huge thank you to than we thought. The Royal Freemasons He had tests with Mulberry Lodge 9834 a neurology for supporting the consultant on 30 Association.

If you have been inspired by Jan’s story you can find out more about the latest volunteering opportunities at www.mndassociation.org/ get-involved/volunteering/ become-a-volunteer/ THUMB PRINT SUMMER 2022

‘We’re each a piece of the puzzle. We fit together to make a whole.’ The importance of friendship is the theme of Episode 15 of the MND Association’s podcast MND Matters. Jennie talks to host Helen Mackie about the strong bond she has with her friends Amanda, Natalie and Justine and how they have helped to support her since she was diagnosed with MND in September 2021. She explains how she initially broke the news of her diagnosis on WhatsApp. She said: “I knew I’d had this diagnosis and I knew I wanted to tell everybody. But at the same time, because I didn’t want to tell one friend and then they felt it had to be a secret. I tried to arrange that we catch up on Zoom, but it didn’t work. So, in the end, I had to send it in a WhatsApp message, which was not ideal, and I did feel bad doing it, but I wanted everybody to know at the same time.” Since then, her friends have been there to support her and have helped with her fundraising efforts. They are also planning a trip to Portugal this summer. Jennie said: “Friendship is so important because we’re all different things in our lives aren’t we? We’re a mum, a daughter, a wife, a work colleague. But when you’re with a friend, you’re just you. So, there aren’t really any sort of any roles or expectations. We’re each a piece of the puzzle and we all fit together to make a whole.” You can listen to the full episode at www.mndassociation.

org/podcast or download it from your usual podcast platform.

A celebration of Pride Episode 16 of MND Matters will celebrate Pride Month. The Association’s Chief Executive, Sally Light will explain why Pride is so important and discuss what the Association is doing to ensure everybody feels welcome and included in the Association’s work. We talk to Angela from Opening Doors London about her experience of being a trans woman accessing health and social care services and Sam, a gay man who is living with MND. Sam talks about his blog, Daddy, Dad and Me and the work he is doing to raise funds and awareness of MND. Listen at www.mndassociation.org/podcast or download the latest episode from your podcast platform.

‘We’re all different things in our lives aren’t we? But when you’re with a friend, you’re just you.

Left to right: Justine, Jennie, Natalie and Amanda

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‘I am determined to face MND head on!’

Lee, pictured at the virtual cycle and row

A man who was diagnosed with MND in 2019, has vowed to continue doing everything he can to inspire and support others living with this devastating disease. As well as helping to raise awareness of MND on his social media channels and writing a book called MND Navigate: Your Mindset Matters, Lee has organised a number of spectacular fundraising events. These include a wheelchair half marathon and a two-day virtual cycle and row, covering the same distance as London’s Big Ben to Rome. Later this summer, he is also aiming to take part in his biggest challenge to date when he takes part in a bungee jump off the Verzasca Dam in Switzerland

I am absolutely determined to remain positive and do everything I can to help support others affected by MND. – the highest spot for bungee jumping anywhere in the world. So far, Lee’s efforts have helped to raise an incredible £12,000 for the MND Association, money which is being spent on grants for children and young people. He said: “I am absolutely determined to

remain positive and do everything I can to help support others affected by MND. If I remain positive, then everyone else around me will do the same. “I have no fear about dying. I have already planned my funeral and prepared letters for my children. But I am absolutely determined to face the disease head on and battle on!” The MND Association offers grants to children and young people under the age of 18 who live with someone who has MND. To find out more, visit our website www.mndassociation.org

Raising a toast to MND charities For those who enjoy a gin and tonic during the summer months, a new gin has been created to help raise money for MND charities. 50 Million Gin was created by the Village Spirit Collective, a small micro-distillery near Guildford in Surrey following a visit by Paul Jameson who is living with MND. The gin was created to mark news of the Government’s plans to invest £50 million in MND research institutes over the next five years, following the success of the United 2 End MND campaign. Paul, who was diagnosed with MND in 2017, said: “50 Million Gin raises a toast to all those in the MND community who fundraise for MND causes, and to those who suffer from the illness with so much courage and strength.” A total of £8 from each bottle sold will be donated to the MND Association. Paul Jameson, left is pictured with campaigner, David Setters

For more information, visit www.50milliongin.co.uk THUMB PRINT SUMMER 2022

MND Buddies

Services for children and young people

Our online activity hub for young children is a great starting point. Our MND Buddies gently introduce MND through games, stories, simple facts and things to do. Join in with the Buddies at: www.mndbuddies.org

If you need family support, help to access counselling or want to find out more about our events for children and young people, contact: cyp@mndassociation.org

Counselling for four – 25 year olds We have partnered with Barnardo’s to offer specialist counselling support to children and young people affected by MND. To find out more, contact: cyp@mndassociation.org

Trusted resources for our children and young people

Treasure boxes and memory boxes Our treasure boxes for young children and memory boxes for older children and teenagers can help them gather positive memories of someone close who has MND. To order the boxes, contact: cyp@mndassociation.org

The MND Association has a range of publications and support for children and young people affected by MND. These can help parents, guardians and trusted adults communicate with younger family members too. Here we explain more about the information available. You can also find more details on our web hub, or by contacting our MND Connect helpline to order printed copies of our resources on 0808 802 6262 or via mndconnect@mndassociation.org

Web hub Our web hub for children, young people, parents and guardians, brings together all of our resources at www. mndassociation.org/cyp We’ll be redeveloping these pages during the summer, so do keep visiting to see how they change. 20

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Why are things changing? Our storybook for young children provides three short tales about families affected by MND. Order the book from MND Connect or listen to the stories read out loud on the MND Buddies activity hub.

When someone close has MND Our activity book for young children is a good way to progress after MND Buddies. It gives a little more detail about the disease, and has looseleaf pages for you to share at a pace to suit the child. The drawing activities can help you as a trusted adult to communicate about MND with the child. A leaflet for adults is included.

So what is MND, anyway? Our guide for older children and teenagers. Full of quotes and tips from other young people affected by MND, the content is open but supportive. Available as a printed book or as a web app at: https:// cypapp.mndassociation.org

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Meet the professionals:

Palliative Care A large number of healthcare professionals are involved in the care of someone who is living with MND. In this series, we discover more about the valuable support they provide and how you can make the most of the services they offer.

The aim of palliative care is to help people have the best possible quality of life with a life-shortening health condition. This is achieved by providing symptom management and psychological, social and spiritual support. This care may be provided in a variety of settings, including hospitals, hospices and in an individual’s home. Many people think that palliative care is only provided in the very end stages of life. However, for maximum benefit with MND, this type of care is recommended from the point of diagnosis onwards. Palliative care services work to improve wellbeing by treating people as a whole person, rather than just focusing on medical symptoms. The range of support they can provide may include:

CARE INFORMATION UPDATE

MND alert card

• family support • counselling, psychological and emotional support, including bereavement support • outpatients clinics to see a specialist doctor, and specialist clinics to manage symptoms such as breathlessness • end of life care.

• outreach support in your own home, including community nurse specialists

A wide range of professionals may be involved in palliative care, including occupational therapists, physiotherapists, nurses, counsellors, social workers and many others. The specific professions involved generally depend on the needs of the person. If you are interested in accessing palliative care services, ask your GP or any other healthcare professional involved in your care what services are available in your area, and where they are based. They should be able to refer you to the service.

Our MND alert card lets emergency and medical teams know that you have MND and who your main contacts are. It also warns about the risk of using oxygen. We have updated this card with a QR code to help professionals link quickly to our information about urgent care with MND. Order this physical item through our MND Connect helpline.

• physiotherapy, occupational therapy and equipment to maximise your independence

Find out more

What do the words and initials mean? We have produced a web page to explain a range of medical, social care and research terms for MND and Kennedy’s disease. You can look up alphabetically by initials (acronyms) or by word at: www.mndassociation.org/words

• short-stay care for symptom management

• spiritual and religious support to help you explore and express your personal beliefs • complementary therapies • palliative day services, including daily activities • social opportunities, for example support groups and drop in sessions as part of day services • practical and financial advice

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Our information sheet 3D - Hospice and palliative care, includes detailed information about the support palliative care services offer, which professionals may be involved, and how to access this support. Download a copy from www.mndassociation.org/ publications or contact our MND Connect helpline to order a hard copy. Email mndconnect@mndassociation.org or call 0808 802 6262.

Caring and MND: quick guide Our short booklet to help those new to a caring role consider their own needs when facing the demands of MND care. This summary on carer wellbeing has been updated. Find this resource and more for carers at: www.mndassociation. org/carers Revised information sheets The following sheets have been updated: • 6C – Managing pain • 10A – Benefits and entitlements • 11C – Equipment and wheelchairs • 11E – Environmental controls See the full range of our information sheets at: www.mndassociation.org/ careinfo Care information finder Try our website search feature to find and group information resources by need. See the Care information finder at www.mndassociation.org/careinfofinder Revised information for professionals We also offer resources to health and social care professionals, to help them provide tailored support. The following items have been updated: • Cognitive change, frontotemporal dementia and MND • A professionals’ guide to end of life care in motor neurone disease • P5 – Providing medical evidence for

benefit applications • P8 – Managing dysphagia in motor neurone disease • P11 – Pain in motor neurone disease See our all of our resources including those for professionals and research 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 ongoing in 2022. If you would like to get involved, you will have opportunities to feed into a range of different content and formats. You can pick and choose which tasks you want to work on and make a difference from the comfort of your own home. To find out more, contact: infofeedback@mndassociation.org

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Researchers come together to discuss MND Members of the MND Association’s research development team spent the Jubilee Bank Holiday engaging with MND clinicians and researchers from all over the world at one of the first MND conferences to be held since the COVID-19 pandemic. The European Network to Cure ALS (ENCALS) 2022 meeting was attended by 600 MND delegates – including researchers, clinicians, charities and industry – to and hear about the latest MND research while discussing their own work.

Multidisciplinary care improves quality of life and life expectancy for people living with MND

New roles will improve care

for people with MND PROMISE 2

EVERYONE GETS THE CARE THEY NEED WHEN THEY NEED IT

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Fourteen community specialist roles are being created in England, Wales and Northern Ireland to help provide additional support to people living with MND and their families. Working alongside our local partners, the Association will be recruiting in Surrey, Swindon, Kent, Northamptonshire, Powys, Lincolnshire, North Warwickshire, Herefordshire, Cheshire and Merseyside, Barnet and Brent in London and three areas of Northern Ireland. These areas are not currently covered by the multidisciplinary care provided by the Association’s 22 care centres and networks. Once in post, the community specialists will be responsible for co-ordinating care via a multidisciplinary care team (MDT). While

the roles will be initially funded by the MND Association, it is hoped that our partners at the NHS will continue to fund the posts in the long-term. Evidence shows that co-ordinated, multidisciplinary care improves quality of life and life expectancy for people living with MND. This important project is also part of the Association’s Promise that people living with MND should get access to the care they need when they need it.

To find out more about the Accessing Multidisciplinary Care project please contact Gary Birkenhead, Care Improvement Programme Lead, gary.birkenhead@ mndassociation.org

What is ENCALS? ENCALS is a network of 35 MND centres based throughout Europe. It was set up to find a cure for MND by working collaboratively across these centres. The group aims to develop a European MND research network and database, attract pharmaceutical companies to conduct trials in MND in Europe, initiate collaborations between funding agencies in Europe and to study novel clinical trial designs. Each year ENCALS organises a meeting, in a different city throughout Europe, to help facilitate discussions and sharing of latest results between the MND research community. Why is the event so important? Meetings like ENCALS are important in helping to move MND research further along by allowing new connections to be made between researchers leading to new ideas, breakthroughs and sharing of expertise and resources across borders and laboratory benches. The event is also important to the MND Association as it helps us to keep up to date with the latest research which we will then communicate back to the MND community. It also enables us to interact with our researchers and meet the next generation of MND researchers. 2022 meeting This year’s meeting was held in person for the first time in three years, at the iconic McEwan Hall in Edinburgh and was organised by the Euan MacDonald Centre for MND research. The three days were split into 11 sessions, each focussing on different topics, including clinical

Young Investigator Award winners: Chen Eitan, Ruben Van Eijk and Ahmad Al-Khleifat

trials updates, models of the disease and genetics. Research updates were given on exploring the disease before symptoms start, genetic links to the development of the disease and understanding more about what goes wrong in cells in MND. There was also an interactive debate about genetic testing practices, allowing the audience to share their thoughts and ideas, as well as further data from phase two and three clinical trial results. Dr Tim Miller from the Washington University School of Medicine, USA, presented the latest open-label extension data from the phase three trial of Tofersen (VALOR) in people living with MND who have particular SOD1 mutations. The initial part of the trial, which ran for six months, did not meet its primary endpoint of reducing the ALSFRS-R decline, however the trial was continued in an open-label extension which meant that everyone who had been on the trial was now allowed to take the treatment. The results suggested that earlier initiation of Tofersen led to a clinical benefit for people with MND. A phase three trial, called ATLAS, is currently ongoing to determine the best time to start Tofersen. There were posters from a wide variety of different topics including the MND Register, the impact of metabolism on MND, clinical trial design and the biology behind MND. Prizes are awarded for the quality of the research within the most outstanding posters. Calum Harvey, one of the PhD students funded by the Association, was included in the list of prize winners, as well as Danielle Leighton whose fellowship we helped to co-fund alongside MND Scotland and the Chief Scientist’s Office. In addition to the main event, there were a range of smaller sessions which were

supported by industry sponsors or other collaborators. These included a session on non-coding RNA in ALS. Non-coding RNAs have recently been identified as promising biomarkers (biological signature of MND) of the disease which could be used as a marker of MND for diagnosis and monitoring disease progression in clinical trials. The session aimed to share the latest expertise and knowledge in the field of MND biomarkers, paying special attention to potential biomarkers known as microRNAs and other non-coding RNAs. This well attended session reflected the importance and need for effective biomarkers in MND and was funded by the MND Association. The research team will be translating the science from ENCALS over on our research blog, so make sure to keep an eye out for further updates. Head to https:// mndresearch.blog/ for more information. You can also find out more about ENCALS at https://www.encals.eu Young Investigator Award Every year at the conference, the Young Investigator Award is presented to the brightest and best young scientists in MND who have made significant achievements and have the most promising career in MND research ahead of them. The prestigious award is given for outstanding research, which challenges existing ideas about MND that results in benefit to people living with MND and increasing our understanding of MND. The award aims to recognise the next generation of researchers, so is only open to researchers aged 35 or under. Unusually, this year the award was given out to three recipients as the judging committee found it too difficult to select one winner. The winners were Chen Eitan, Ruben Van Eijk and Ahmad Al-Khleifat, pictured. Ahmad is a recent addition to our Lady Edith Wolfson Fellowship Programme and is currently reviewing new ways to sub-group MND and FTD, based on common features of disease, for example those with the same genetic mutation or the same site of symptom onset. This work can be used to understand the underlying biological mechanisms of each condition and better group people together in clinical trials.

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We’re running

for Rob! It’s been amazing to see people in Leeds and beyond get behind Rob on this journey over the last few years, and seeing the launch of a dedicated event in the Rob Burrow Leeds Marathon is an incredible feeling.

More than 900 runners will take to the streets of Leeds in May next year to take part in the Rob Burrow Leeds Marathon and raise money for the MND Association. The event, which was unveiled by MND Association patron Kevin Sinfield OBE on BBC Breakfast, will raise money for the MND Association and the Leeds Hospital Charity. The marathon will start and finish at Headingley Stadium, home of the Leeds Rhinos where Rob Burrow MBE and Kevin were teammates. Fittingly, 7,777 runners will take part in the race, recognising Rob’s number ‘7’ shirt. The number has been synonymous with Rob since he shared his MND diagnosis in December 2019 and provided inspiration for Kevin’s own 7 in 7 Challenge.

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The event has already proved popular with both first-time runners and #TeamMND stalwarts alike. Rugby fan Chris Vollands was inspired to sign up after watching coverage on TV. He said: “I’ve always believed everyone has a marathon in them and this will be mine! It’s hard to get started, knowing that I can’t even run one mile and I’ve got to do 26 – It feels so daunting. However, my friends who run really encourage me, saying that come September I’ll be wondering how I ever found one mile tricky. It’s reassuring to know there’s a fantastic team of MND runners all doing this together!” Christine Baker has been fundraising for the Association since her mum died in 2006, just 10 months after being

diagnosed with MND. Christine said: “It’s fantastic that so many of us can get together and raise funds and awareness for the fight against MND. I love meeting up with other #TeamMND runners at events, but never have we had the opportunity for so many of us to fly the blue and orange flag. The course is hilly so it’s going to be a tough event but, like my fellow Run MND runners, there’s no way I would miss this one. There’s a real buzz of excitement about the Rob Burrow Leeds Marathon – it will be an incredibly special day for the whole MND community.” To find out more about the event and how you can get involved visit www.mndassociation.org/runforrob

Join #TeamMND and take on the ultimate challenge Team MND will be among those taking part in the TCS Virtual London Marathon when it takes place in October. Runners from all over the world will complete 26.2 miles in 24 hours to raise money for charities including the MND Association, earning themselves a coveted official London Marathon finishers medal. Our team will be tackling the miles in a variety of different ways, from walking just over a mile every hour to running a route around their favourite local pubs! Last year, #TeamMND walked and climbed a total of 733.6 miles, raising more than £73,000 for families affected by MND.

The charity is incredible in supporting individuals and their families affected by this devastating disease. I was really proud of how much I raised.

Louise and her sister Jenny who took part in the virtual London Marathon in 2019

Louise and her sister Jenny took part in the event to honour their friend Neville, who was diagnosed with MND in 2019. Louise said: ‘It was really emotional having my friends and family supporting me throughout and having my friend Neville come and see us finish. I had a few happy, emotional tears but was completely buzzing.” Milly Coxhead took part by running along the Camel Trail in Cornwall. She ran 13.1 miles before turning around and running back to where she started and her virtual finish line. It was her first marathon, and she completed the distance in four hours and 55 minutes.

Milly Coxhead, pictured with the family which have inspired her run

Milly raised funds for the Cardiff and Vale of Glamorgan Branch of the Association, in honour of her friend’s mum who has MND. She said: “The fight against motor neurone disease has become close to me over recent years following the diagnosis of Meg’s mum. I wanted to show my support for the family, so when I entered the Virtual London Marathon, I decided to set up a JustGiving page and start

fundraising. The charity is incredible in supporting individuals and their families affected by this devastating disease. I was really proud of how much I raised – the challenge was tough, but it was definitely worth it!” You can join #TeamMND today by visiting www.mndassociation.org/ virtuallondonmarathon. It costs just £15 to take part, along with a £195 fundraising pledge. THUMB PRINT SUMMER 2022

An artist is using his incredible talent to help raise funds and awareness of MND Brent Sheldon from Leeds has been painting for many years and was inspired to support the Association after hearing Association patron Rob Burrow MBE, who is a former Leeds Rhinos player, share his experience of living with MND. Brent, a design technician at a school in Leeds, explained: “I’m a lifelong Leeds fan and Rob is one of my heroes, so when the news broke about his MND diagnosis I, like many people, was really upset. “It was when I attended the fundraiser match at Headingley in January 2020 that I decided I wanted to try and do something to help raise funds for Rob and I decided to paint.

Remembering Peter A ‘true pioneer’ Former MND Association trustee and leading scientist Dr Peter Scott-Morgan has died aged 64. Peter was diagnosed with MND in 2017 and from the very start refused to be beaten – constantly pushing boundaries and harnessing the very latest technology to enable him to live his extraordinary life to its fullest.

He was a true pioneer, who refused to accept the status quo and always believed in the strength of love and the human spirit. We will always be grateful to him for his support. In 2018, Peter joined the MND Association’s Board of Trustees. Speaking at the time he said: “We’re now well into the 21st Century. This is the age of hi-tech and there are huge benefits in us exploring just how people living with MND can benefit from all the billions being spent by the gaming industry on virtual reality, the automotive industry on

Brent, pictured at a stall raising money for the MND Association

“The very first painting I did was the image of Rob scoring his most famous try for Leeds in the Grand Final 2011. It’s universally acknowledged as one of the greatest tries ever scored. When I posted an image of the painting on social media it went viral, and the response was incredible. I got messages from Rob himself and even did an interview with BBC Leeds. I auctioned the painting off via Twitter as, by then, we were in lockdown. School was closed, and I was working from home, so I decided to do more painting. I chose an image of Rob playing in his last ever game and Rob and Danny McGuire together.” Brent also explained how he met Rob and his family while he was painting a mural of him at New College in Pontefract. He said: “It was amazing to meet him. He very kindly signed the first three paintings so that was really special. We managed to raise £1,800 from those paintings alone.” In recent months, some of Brent’s artwork has been auctioned off at a

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Dr Peter Scott-Morgan

Brent’s painting of Kevin Sinfield OBE and Rob Burrow MBE

number of charity events. He said: “I painted two pieces for a charity ball organised by Rob’s sisters. The first one, of Kevin taking part in the 7 in 7 Challenge sold at auction for £4,000. The second, was of Kevin and Rob embracing at Rob’s final game and is a real iconic image. This painting sold at the auction for an incredible £10,000! “Rob and Kev are both amazing people, so warm and humble, and I just feel that

this is the least I can do. It is an honour to spend my time doing something that I know will help.” In total, Brent’s art has raised more than £24,000 for the MND Association. For more information follow @armleyartist on Twitter or visit his store at www.ebay.co.uk/usr/ brentsheldonart https://linktr.ee/brentsheldon

Dr Peter Scott-Morgan pictured taking part in the Next Generation Technology Think Tank

driverless cars, the computing industry on expressive voice synthesisers and so on. It’s all potentially life-changing for those of us with MND. “I draw immense strength and comfort from my exceptionally deep faith in three things – science, because if anything can improve my life with MND, it can. Humanity, because despite our supreme stupidity at times, together we’ll work things out – for MND and lots of other things too – and love, because when all else fails unconditional love is one of the greatest forces in the universe.” Peter was heavily involved in the creation of the MND Association’s Next Generation Technology Think Tank and in 2020 was the subject of a Channel 4

documentary, Peter: The Human Cyborg which explored how he used technology and medical interventions to help him to overcome the challenges presented by MND. He also created the Scott-Morgan Foundation alongside his husband, Francis. The Association’s Chief Executive Sally Light said: “Everyone at the MND Association is deeply sorry to hear this awful news. Peter was, and always will be, a hero of mine. He was a true pioneer, who refused to accept the status quo and always believed in the strength of love and the human spirit. We will always be grateful to him for his support. Our thoughts are with Francis and their family and friends at this incredibly difficult time.” THUMB PRINT SUMMER 2022

Couples celebrate their love with weddings to remember Leanne and Gary

Image by Kayte

It’s summer, which can only mean one thing – it’s officially wedding season. Here, people affected by MND talk about how they spent their special day, making memories with loved ones and friends.

We wanted to tell our story to help raise awareness of MND and encourage people to support the Association’s fundraising efforts to provide assistance for those living with the disease and for research into a cure.

Steve and Byron Steve and Byron got married at Chester Register Office in May surrounded by 22 of their closest family and friends. The couple had planned to marry in Sitges in Spain but were devastated when Steve was diagnosed with MND in January. Byron said: “It was a hell of a shock, though we knew it could be MND. “Steve has had long term back problems

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“In November 2020 we received the devastating diagnosis that Gary had motor neurone disease. “This diagnosis shook our world and we had so many unanswered questions. Julie Sala, the MND Specialist Nurse at the Lancashire and South Cumbria MND Care and Research Centre, got in touch with us and provided much needed support. “Julie gave us information about the MND Association, which we have found to be a beneficial tool that has provided us with information and answered some of our questions.

We would like to thank Julie and the MND Association for their on-going support and contributions to our special day.

and had spinal fusion 20 years ago. When he began with drop foot difficulties, we thought it could be linked to this but no.” The couple met at a mutual friend’s art exhibition in Manchester. Byron said: “He sat opposite me and passed me a Love Heart sweet which said, ‘Hey boy’ and raised his eyebrows. I thought, ‘He’s into me, he’s gay.’ “That was nine years ago and I was living in Manchester. We decided we would give it a year and then we decided

to live together, and I moved in with him at his home in Ellesmere Port. “It may not have been the wedding we were going to have with a greater number of guests, but it was no lesser a wedding and was still the most gorgeous day. “We wanted to tell our story to help raise awareness of MND and encourage people to support the Association’s fundraising efforts to provide assistance for those living with the disease and for research into a cure.”

“Since Gary’s diagnosis, his overall health has deteriorated. We have two children, Kyla aged eight and Jack aged two, as well as Gary’s two children, Thomas aged 18 and Dylan aged 13. We want to make memories for our children while we can do so. “Gary turned 41 in October 2021, and we held a party for him. At this party, my sister asked if she could arrange a wedding for us. We wanted to do this as soon as possible while Gary was strong enough to walk down the aisle. The wedding was booked for seven weeks later. “We needed to raise the funds to cover the cost of the wedding. Family and friends donated, and we approached the MND Association to apply for a Quality of Life Grant. Gary and I got married on 27 November 2021. “It was an amazing day and lots of memories were made. We would like to thank Julie and the MND Association for their on-going support and contributions to our special day.” THUMB PRINT SUMMER 2022

Players come together

to honour Smithy

Roger ‘Smithy’ Smith, centre, pictured with members of Maidenhead Rugby Club who took part in the fundraising challenge

Members of Maidenhead Rugby Club took part in a special fundraising challenge to honour their former teammate who is living with MND. Roger ‘Smithy’ Smith played for Maidenhead Rugby Football Club for 15 years during the 90s and early 2000s, playing in the number 13 shirt. He was diagnosed with MND in April 2021. On 14 May, the club hosted a very special fundraising event, taking part in a 13hour challenge to honour Roger. All those taking part ran or walked 13 laps of the club’s pitch, raising £17,300. Allan Greene, who played alongside Roger in the early 1990s organised the event. He said: “Roger was an integral part of a successful team, a strong and uncompromising player on the pitch who gave no less than 100% each game. Seeing how Roger has been fighting MND in the exact same way, with resilience

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Seeing how Roger has been fighting MND in the exact same way, with resilience and good humour, inspired us all to do something to honour him – so that’s why we called the day Smithy’s Day.

and good humour, inspired us all to do something to honour him – so that’s why we called the day Smithy’s Day. This challenge is nothing compared to what Roger and his family are going through at the moment. We know that every penny raised for the MND Association will make a big difference in supporting lots of families facing the same diagnosis and hopefully one day there might be a cure for this dreadful disease. “The Smith family was blown away by the community spirit of the club through this event. They take away many memories and lots of positivity. Maidenhead RFC certainly can look after their own. As a club we never lost sight of why we were doing this event and at the same time we had fun, laughter and plenty of emotion. Roger told me he hasn’t stopped smiling since. That is priceless.”

News

from our networks

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

Diversity, Equity and Ethnic Minority (DEEM) Currently, the DEEM Network Group is working on raising awareness of the group and increasing its membership. We are discussing potential avenues for this with the Community Engagement Team, including better representation on social media, highlighting cultural events, and ensuring Promise 5 – No one faces MND alone – includes everyone. We already have one volunteer who is part of the group and would love to hear from other volunteers, from people with MND, from people affected by MND and from members with a minority ethnic background. Please get in touch at DEEM@mndassociation.org

The LGBTQIA+ Network Group The LGBTQIA+ network continues to provide a safe space for members of the

community, working to raise awareness of LGBT+ issues. As always, the network is open to anyone who is a member of the community, and can be reached at lgbtqia@mndassociation.org

Hidden Disabilities and Conditions Forum This new forum is intended for people with disabilities or conditions that may not be immediately obvious such as dyslexia, autism, dyspraxia, epilepsy, hearing or visual impairments, diabetes or long term conditions like ME. The forum meets once a month via Teams or Zoom and is a safe space open to open to staff, volunteers, people affected by MND and Association members. If you would like to join the forum or know more about it please drop us a line at inclusion@mndassociation.org

To support Allan Greene and Maidenhead RFC’s fundraising efforts please visit www.justgiving.com/team/ smithy13 THUMB PRINT SUMMER 2022

A little kindness never goes out of style Women who are living with or affected by MND were given a day to remember, thanks to a team of Cabi stylists. On 11 May a group of personal stylists from the home-based fashion brand, Cabi came together to host the UK Heart of Cabi Day as part of the company’s charitable foundation. The Heart of Cabi Foundation was founded to empower women, through the gift of clothes and small business loans in the developing world. The event was held in Failand in Somerset and offered a free personal styling experience to women affected by MND. The stylists were led by Penny Gunter, a Cabi stylist and the brand’s Foundation UK Ambassador. Penny’s husband Malcolm was diagnosed with MND in May 2017 and died just a few months later. After Malcolm’s death his friends set up the Malcolm Gunter Foundation in his memory and kindly supported the event with room hire costs and homemade cakes. Penny said: “As a personal stylist, I see first-hand the impact clothes have on how women feel about themselves - and while this is something small in the overall scheme of things, we hoped it gave a big boost to these ladies and offered a few hours of respite where they felt really spoilt. “As the Heart of Cabi Foundation Ambassador for the UK this year, I was so delighted to be able to do something special for ladies affected by MND. I know what a horrific disease this is, not only for the person living with the disease, but also for their friends and family. It was such an honour to give these ladies a special treat as they struggle with the consequences of MND.” During the event, guests were able to

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I was so delighted to be able to do something special for ladies affected by MND. I know what a horrific disease this is, not only for the person living with the disease, but also for their friends and family.

Musicians spread the word about MND A group of musicians from Kent have helped to raise more than £900 after recording a new song about MND. The song called Mend has been written by songwriter friend Robin Fuller from Maidstone, who was originally approached to write a song about MND by Dave Smart. Dave’s wife, Lynn, sadly died from MND in 2020. Dave explained: “MND is one disease that you would not wish on your worst enemy, let alone your loved ones. “Ten months after my lovely wife Lynn was diagnosed, she passed away on 12 October 2020. We were together for 51 years, a wife, mother, daughter, sister and my best friend. I cannot do anything about what has happened to me and my family,

Penny Gunter, the Heart of Cabi Foundation’s UK Ambassador

David Smart, pictured with his wife, Lynn

The Wevet Menders, who have recorded the song Mend about MND

but I do want to do whatever I can to make sure no other family has to go through what we did.” Robin agreed to take on Dave’s challenge, recording the song with a sixpiece group made up of family and friends called The Wevet Menders. Robin said: “We really hope the song will raise funds for research into the causes of MND and, one day, find a treatment to prevent it. “The group’s name comes from ‘Wevet’ – an old Dorset word for a cobweb. A wevet mender would need the skills of a neurosurgeon and the dexterity of a spider. The tiny filaments which make up our nervous systems can sometimes send the

wrong messages. MND is like a fly in the wevet of our brains.” Dave, together with his family and friends, have already raised more than £6,000 for the MND Association and he hopes proceeds from this song will push that total to £10,000. The song has been released on YouTube with a video featuring photos by Jonathan Fuller, Lynda Fuller and Robin Fuller. CDs and T-shirts are also available featuring the striking Wevet Menders logo designed by Poppy Partridge. For more information visit www.thewevetmenders.com. To donate visit https://bit.ly/3w384Gz

"I'm leaving a gift in my Will because I try on various items of clothing which had been generously donated by the fashion brand, and with help from the stylists, decide what suited them most. Carole was one of the women who took part in the event. She said: “I want to give my heartfelt thanks to the Heart of Cabi Foundation and the Malcom Gunter Foundation for a really lovely afternoon. The people there were so welcoming and helpful, and the new clothes are such a treat. “I volunteered for the Cornwall Branch of the MND Association 18 months ago after my husband died from MND. With all the restrictions, we haven’t been able to meet in person since I joined and so a real

benefit for me was not only the expert help and fashion tips from the stylist, but the opportunity to meet other members of the Cornwall Branch. I live alone and it was lovely to be able to share a little and meet with others who have had similar experiences. “Penny was inspiring, and it was great to be able to hear about the Foundation and thank her for her part in organising the event. We were plied with tea, coffee and delicious cakes, the atmosphere was fun and the stylists great at making suggestions on different ways to wear clothes that really suited.” Penny also took part in the Tewkesbury Half Marathon on 15 May, raising more than £7,300 for the MND Association.

want to see an end to MND." David

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

legacies@mndassociation.org

www.mndassociation.org/wills

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Thank you TO ALL OUR FUNDRAISERS

£1,370 A step closer to a cure: On Saturday 7 May, David Evans who is living with MND held his Walk for MND Research at the Abbey Gardens in Bury St Edmunds. David was joined by many friends and family including Alex Winter and Association visitor Gill Solway (pictured). The fundraising walk took the group through the beautiful gardens around the Abbey and through the centre of Bury St Edmunds. The event has so far raised more than £1,370.

£1,800

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A golden challenge: To mark turning 50, supporter Tamara Turchet completed a different challenge each week for 50 weeks, raising more than £3,700. Her challenges ranged from a Marmite eating challenge to a very active mile-long walk – 50 times! Tamara has no connection to MND but felt it was an important cause. She said: “I simply cannot begin to imagine what it must be like to be in their shoes. But if I were, I would be relieved to know that others might be there to help me fight the best fight I could.”

£1,200

£15,000

£3,700 Let’s get physical!: Laura Goldsmith and Anya Peter recently completed a 24-hour fitness challenge which involved various exercises including running 15K, 2,000 netball passes, 500 burpees and lots more, all within 24 hours. The energetic pair raised more than £1,200 in honour of a friend’s dad who has recently been diagnosed with MND.

Where there’s mud there’s money!: Harry along with his friends Jon, Wiki, Alex and Ellie took part in a Tough Mudder event in April. Prior to taking part they said: “We are severely untrained athletes but knowing that doing this will help a cause that means a lot to us will get us through the mud and the tear gas!” They not only raised £1,800 between them but loved the event so much they are hoping to do it again next year.

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

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Memories never fade: A charity concert was held raising funds towards MND research and for the Norfolk and Waveney Branch in memory of John Davy’s wife Agnes. John said: “I had to develop a way for Agnes to have a lasting and positive legacy for the MND Association. I knew she was hugely grateful for the support we received from them. What better way to do it than ask some bands we liked to come and play in our city in Agnes’ name? It was a party on the night with everyone having a great time and one for which Agnes would be rightfully proud.” The event raised more than £15,000.

£1,200 Third time lucky!: After originally signing up to the Brighton Marathon back in 2019 and the event being cancelled because of Covid, Katherine Hesketh took part in the run in April, in memory of her father-in-law. Katherine said: “I can’t change what happened to my family, but I know that fundraising for the MND Association means that they can continue to help other families whose lives have been impacted by MND.” Katherine has raised more than £1,200.

£10,000 £2,250 Making every mile count: When MND took two of the most fantastic women Mike Hornby had ever come across, he wanted to do something to help the MND Association and raise awareness. Remembering the energy and the cheery smiles of his Aunty Pauline and friend Chris helped him as he ran the gruelling 13.1 miles of the Southampton Half Marathon in April. He has raised an amazing £2,250.

‘In memory of Mum’: Bethan Jenkins has raised more than £10,000 by running the London Marathon in 2021 and in May completed the RideLondon-Essex 100 cycle challenge, in memory of her mum who died in 2019. Beth said: “I want to help other families who are experiencing what I have experienced. The MND Association provided invaluable support for our family and I want to ensure that others affected by MND receive that support. More importantly, I want to help find a cure to this disease! I want to be a part of finding what causes MND and preventing it from happening to anyone else.”

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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.

30 years of care through the eyes of an MND nurse “I am Tracy, and I am the Lead Care Co-ordinator for the MND network in Devon and Cornwall. “I have recently been off on extended sick leave from my job as I had my knee replaced. While I was off, it gave me some time to ponder my career and MND. “I qualified as a nurse in 1988, and was always very drawn to palliative care, but in those days you needed some cancer experience first, to get involved. I worked at St Mary’s in London on the oncology ward, giving chemo and supporting patients. I moved to Crawley and worked in the local hospice and quickly became Junior Ward Sister. I wanted to work in the community though, so joined the Clinical Nurse Specialists in 1992. “At that time, they wanted each specialist nurse to adopt a speciality within the team. As the newest girl, I was asked to take on MND patients, as the hospice was just opening its doors to people with MND. “I had never even met a person with MND, so I learnt on the hoof and I had a steep learning curve. “On 22 June 1992, I visited an elderly lady, living alone in a small house in Surrey. I can picture her now and remember her name. She was losing her speech and I struggled to understand anything she said. I felt hopeless. I remember she got a hyoscine patch for her excess saliva and a letter chart to spell out words, but there was little more in terms of support. She died very quickly, but I had the honour to be with her at the end and she was peaceful. “On June 22 this year, I will have worked with MND for 30 years, and I intend to celebrate. What am I celebrating, there is still no cure? “There have been huge advances in

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Fundraising is a family affair

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

Social media

Tracy Thomas who is marking 30 years as an MND nurse

the care and support available for people with MND and their family. We have feeding tubes, non-invasive ventilation and even options for tracheostomy. We have Eye Gaze and voice banking, powered wheelchairs and iPads. Assisted technology, even Alexa - and so many splints and orthotics. All these things have helped to improve the life of people with the disease. We also have the MND Association providing grants and the Breathing Space kits, which became the Just in Case kits. “Perhaps though, the biggest change is the amazing team of professionals who now support people with MND, the physios, occupational therapists (OTs), speech therapists, dietitians. There are also respiratory teams, wheelchair services, assistive technology teams and alternative augmentative communication (AAC) teams to name but a few. We all meet together in multidisciplinary team

Perhaps though, the biggest change is the amazing team of professionals who now support people with MND, the physios, occupational therapists (OTs), speech therapists, dietitians. meetings and on home visits to try to navigate the best care for people with MND. “I am hoping for perhaps a few more years in my job before I hang up my nurse’s hat for good and I hope to spend them with MND patients and their families and the teams who care for them, all the while watching all the new exciting research coming this way. I pray one of these drugs will finally end this illness. Maybe this year, or next, who knows, in which case I can hang up my hat a little sooner. “I can honestly say it has been my honour to care for so many people with MND over the past 30 years. I long for the day when we can say: ‘MND? We can treat you for that, you will be fine. “Hope remains the thing that binds us all together.” Tracy Thomas

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

mndassociation mndassoc mndassoc “I was diagnosed with MND in July 2020 and have been involved in two fundraisers recently. “My brother Denis organised the Yorkshire Dales Three Peaks Challenge on Easter Saturday when he took part along with my other brother Brian and their families, walking the 24-mile circular route which included Pen-y-Ghent, Whernside and Ingleborough mountain. I completed this walk in 2000 but, needless to say, I wasn’t up to meeting the challenge this time! They raised just over £3,400 for the MND Association. The photo shows the walkers at the half-

way stage as well as the support team, which included me, who kept the walkers supplied with water and lunch. “I am also a member of the Londonbased Republic of Ireland Football Supporters Club and each season we fundraise for a nominated charity. This season I nominated the Irish MND Association and as part of the fundraising we held a quiz on 20 May which raised a total of £2,000. There are other fundraising events being planned, including a golf day. Ian Carson

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

Ian Carson presents the trophy to the winning team at the Republic of Ireland Football Supporters Club quiz

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

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