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The magazine of the Motor Neurone Disease Association

Winter 2019

Founder members look back over 40 years


For mND

GAZE COMPATIBLE

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, part of the

family


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Bringing the world together Looking back at the International Symposium on ALS/MND

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Founder members look back over 40 years As we mark the Association’s 40th anniversary, Thumb Print remembers how it all began

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Become a trustee in 2019 Meet three of our serving trustees and find out how you could join them

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‘Dedicated to solving the MND puzzle’ The MND Association’s Head of Research, Dr Nick Cole reflects on an important year for MND research

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‘I want to prove that people with MND are not alone’ Former footballer Len Johnrose, who is living with MND, shares his story

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Signing up to make a difference How the MND Charter is working in communities across the three nations

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Thank you! Remembering the work of our extraordinary fundraisers

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, David Niven House, 10-15 Notre Dame Mews, Northampton, NN1 2BG Reg. charity number 294354. On the cover: Founder members of the MND Association gather to mark its 40th anniversary. From left to right: Martin Anderson, Jenny Elston, Ann Gretton, Lesley Ogden, Colin de’Ath and Joyce Prince.

Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2018.

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

welcome… This year, the MND Association will mark its 40th anniversary – a unique and poignant moment in our history. For me, and I expect for many of you too, it is a milestone that evokes strong emotions – from great pride at the significant steps forward we have made in those 40 years to immense frustration that there are still so many gaps in services for people with MND and only one available drug treatment. It is a time to remember all the loved ones, friends and colleagues we have lost to this cruel and devastating disease and to renew our commitment to our shared vision of a world free from MND. But I also believe It is a time of increased hope. In December, I had the great privilege of attending the MND Association’s annual International Symposium on ALS/ MND held in Glasgow. The Symposium is the largest event of its kind anywhere in the world, bringing together more than 1,200 of the greatest minds in MND research and clinical care under one roof. It was an extraordinary and moving experience to be there, to witness researchers from all over the world working together, united and resolute in their commitment to find the breakthrough which will pave the way for new treatments and the possibility of a cure. While this important work continues in laboratories and clinics all over the world, the MND Association stands ready to support all those who bravely cope with the harsh reality of MND each and every day, in any way it can. Over the past 40 years, the MND Association, thanks to its volunteers, staff and supporters, has been there to make sure that nobody has to face MND alone – and that is something that will never change. Thank you for all your support.

Sally Light Chief Executive

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Bringing the world I

N December the International Symposium on ALS/MND - the largest scientific conference dedicated to MND anywhere in the world - was held in Glasgow, Scotland. Organised by the MND Association and hosted by MND Scotland, the three-day event brought together more than 1,200 of the world’s leading experts in MND research to share information about their work. As well as being a chance for researchers to share their findings, the Symposium also provided a unique opportunity for them to come together, sparking new ideas and collaborations. The MND Association’s Head of Research, Dr Nick Cole said the event had been a huge success: “The cacophony of chatter and discussion in the coffee, lunch and poster sessions was incredible – so much excitement, interactions, building lasting friendships and collaborations. Among the other developments discussed at the Symposium were: It’s not just about motor neurones The non-neuronal cell session was important because it was once thought that motor neurones were the only cells that caused MND. It is now clear that MND involves many different cell types, and in particular those that support the motor neurones themselves. It is only recently, with the development of powerful tools and technologies such as MRI and microscopy that we are now able to see and understand for the first time the contribution of these cell types in the normal function of motor neurones and the development of MND. Why are genes important? The Genetics and Genomics session explained how looking at genes and MND provides us with clues which allow us to understand the biology of MND. The more genes we discover the greater our understanding of what small process is going wrong in the body which then causes MND. We can then focus on this pathway to understand it and develop medicines to correct any problems. Is the microbiome to blame? One of the recent trends in neurodegenerative research has been the focus on gut bacteria (the microbiome), which are believed

HRH The Princess Royal presents The Humanitarian Award to Dr Brian Dickie

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Delegates attend one of the poster sessions

to be able to influence cells in the brain and, in some cases, can trigger a toxic response leading to inflammation of neurons and their subsequent death. Although this relationship has not yet been fully explored, researchers are now looking closely into the effects our diet and intake of antibiotics have on our nervous system. Stratification to improve clinical trials Recent reanalyses found the effect of the lithium drug on people with an UNC13A genetic mutation, but not in others, showing us the importance of considering genetic variations in clinical trials. Suggestions have been made that drug trials should specifically focus on the gene variations that are known to be most prevalent in the population – these are generally variations in the C9ORF72, SOD1, FUS and TDP-43 genes. The effect of lifestyle One whole session was dedicated to the effect of lifestyle and environment on the development and progression of MND. Findings from one study involving a large group of people with MND found that trauma, such as head injury, increases risk when encountered over the age of 55, but not when the trauma occurs before this age. You can find out more about these and other topics on the Periodic Table of MND Research. See next page for details.


together

Highlights from the 29th annual Symposium on ALS/MND Allied Professionals Forum Held one day before the Symposium, the Allied Professionals Forum invited health and social care professionals to exchange information about good practice and to facilitate the highest standard of care for people with MND. The Association had two speakers - Adele O’Toole who talked about the support MND Connect Helpline offers to healthcare professionals, and Emily Richardson who presented on the range of information the Association provides to support families affected by MND. Ask the Experts This two-hour pre-Symposium session was directed at all those who are living with MND or affected by it. Each year we hear from researchers and speakers on four different topics of interest and provide a platform for people in the room and those watching online to ask questions. Poster sessions and Poster Prize Aside from the talks that took place across the three days, another big part of the Symposium was the poster session, which allowed hundreds of researchers to share their work and discuss it with delegates. The Association awarded a prize for the best quality biomedical and clinical research presented in the form of a poster. Yuri Ciervo, a PhD student from the University of Sheffield, and Dr Fleur Garton, a postdoctoral fellow from the University of Queensland in Australia won the Biomedical Poster Prize, and Harry McDonough, a medical student from the University of Sheffield, won the Clinical Poster Prize.

Periodic Table of MND Research

Do you want to find out more about the Symposium? Head to www.mndassociation.org/symplive to find the Association’s Periodic Table of MND Research. The table has been designed to explain more about all the topics that were discussed at the Symposium together with links to the relevant resources, video interviews and more.

Awards Two awards are presented by the International Alliance of ALS/MND Associations every year. This year, the awards were presented by the Association’s Patron HRH The Princess Royal. The Humanitarian Award recognises non-scientific contribution in the fight against ALS/MND, and is presented to someone whose work has made a significant contribution to people affected by MND. We are extremely proud of the Association’s Director of Research Development, Dr Brian Dickie, for winning the 2018 award. The Forbes Norris Award, presented in memory of a neurologist Dr Forbes Norris, was awarded to Dr Angela Genge, a neurologist from McGill University in Canada for her relentless dedication to improving management of and advances in understanding ALS/MND. The Paulo Gontijo Award was presented to Dr Rickie Patani of University College London. The Shay Rishoni Patient Impact Award was presented to two people: Dr Ian Davies, a clinician who founded the FightMND institution to fund research into the disease, and Neale Daniher, whose involvement in the Big Freeze challenge raised funds towards FightMND. Ian sadly died from MND shortly before the Symposium.

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‘We needed support, but This year, the MND Association will be marking its 40th anniversary – a milestone which is only possible thanks to the outstanding commitment and dedication of our founder members. Here, we share their story and their memories of how the Association began.

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T was a simple knock on Martin Anderson’s door that changed not just his life, but the lives of people living with MND forever. “One December night, my neighbour Roger Carus, knocked on my door and told me he had got MND. He used to live opposite me in Nottingham and often helped me to change the oil in my car,” Martin explained. “He said, ‘Before I die, I want to form a charity,’ and I thought, ‘Alright then, I’ll help.’ That knock on the door changed my life completely.” Roger, who was married to Jenny and had two young children, was interviewed by the Nottingham Evening Post and the response to the article was so positive led to a preliminary meeting being held at the couple’s home in February 1979. Jenny explained: “We started it because we knew we wanted support. We needed something because nobody could help us. At the very first meeting I remember there was a lady whose husband had died ten years earlier. She hadn’t heard of MND before he got it and she hadn’t heard of anybody with it since he had died. She was pleased to be able to talk to someone and I remember going away thinking if she had got through it then so could I. That still happens today.” Elsewhere in the country two other groups, both with personal experience of MND, were also on the lookout for help and support. In London, John Prince approached the Evening Standard. In an advert, he wrote simply: ‘May I ask any of your readers who suffer from motor neurone disease, or who are related to a sufferer of this condition to write to me with a view to forming a patients’ association.’ His wife, Joyce said: “In 1972, we were on holiday in Falmouth and John was carrying a child on his back up this steep hill and he was really exhausted. He said, ‘There’s something wrong with me.’ He went through a long process and eventually finished up in a

The founder members pictured at an early meeting

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Founder members Joyce Prince and Colin de’Ath pictured with the Association’s Director of External Affairs, Chris James

hospital for neurological diseases in Queen’s Square. It was 1973 by then and no-one was being frank about the disease he had. I went to see a neurologist to try and get a name out of him but couldn’t get one. It was John’s idea to set up the self-help group and I absolutely agreed with him.” Around 40 people responded to John’s advert and a meeting was held at the home he shared in Ealing with his wife Joyce in June 1978. Among them was Dr Clifford Rose, a neurologist from Hammersmith Hospital and Len and Peggy Betterton whose son Paul had recently been diagnosed with MND aged just 29. The final link was Peggy Berrie, who had set-up a support group in Humberside following the death of her husband Bill. She made contact with the Nottingham group and on 6 October 1979 the MND Association was born. Reflecting on the 40th anniversary of the Association, Jenny said: “We couldn’t believe it would grow like this and get so far. Looking back it has been fantastic. People with MND have so much support now whereas we were in our own. I go to support group meetings now and see how people value the support they get, not just locally but nationally as well. They couldn’t have coped without the Association.”


no-one could help us’ Thumb Print: 40 years of headlines

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HE first issue of the MND Association newsletter, the precursor to Thumb Print, was published in November 1979 – just a month after the Association was founded. In it, the newsletter announced that the Association had been registered as a charity and that the newsletter would be published ‘two to four times a year.’ At the time, the Association was made up of three groups in London, Nottingham and Humberside and it had been announced that an AGM would be held in April each year. A handbook called Homecare for MND Patients had been published, as well as a leaflet called What is MND? Car stickers, pens and lapel badges were available for 25p and 10p respectively, while Christmas cards could be purchased for 50p.

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Y Autumn 1983, the newsletter had a very different feel – and the Association had a new logo. The front cover featured a story about the late actor, David Niven who had died from MND earlier that year. The story explained how a group of his friends had pledged their support for the Association by launching a national appeal in his memory. In other news, it was reported that research at Charing Cross Hospital in London was now being funded by the Association and a research fellow had been employed at the National Hospital, Queen Square. An MND Association collecting box had also found itself on a North Sea oil rig!

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HE 1998 Autumn/Winter edition looked very different, with a new masthead, logo and the introduction of two colour printing. The front page story explained more about the success of an early awareness campaign, featuring the face of Bill Johnson, which received a large amount of attention in both national and international media. Sadly, Bill died from MND shortly before the campaign was launched. The magazine also reported on the annual conference which had been held in September 1988 at the NEC in Birmingham. Among those attending was the Association’s Medical Patron, Dr Frank Clifford Rose and Medical Patron, Professor Stephen Hawking.

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HE first issue of Thumb Print was published in Winter 1991. The front page was dedicated to the launch of the Breathing Space Programme, an initiative which aimed to provide a ‘breathing space kit’ to people living with MND comprising of information leaflets and a small box containing medication prescribed by the patient’s GP. Thumb Print also reported on a recent meeting of the International Alliance, featuring associations from as far afield as South Africa, Romania and the Philippines.

Exhibition will mark Association’s anniversary

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N exhibition featuring the work of artists who are living with MND is being held from 2-6 October. The event is being held at the Oxo Wharf Tower on London’s South Bank to mark the MND Association’s 40th anniversary between 11am and 6pm on each day and proceeds from the sale of the art will benefit our work. The exhibition is one of a host of events being held throughout the year, more details will be available in the next edition of Thumb Print.

Share your story with other readers of Thumb Print What does the MND Association mean to you? Do you have a story to tell about how the Association has supported you or a family member over the past 40 years or perhaps you have been inspired to support us either as a volunteer, campaigner or fundraiser. As the MND Association marks its 40th anniversary in 2019 we would love to hear from you and share your story with other members of Thumb Print. Please get in touch by emailing clare. brennan@mndassociation.org www.mndassociation.org

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Funding is secured for care service in North Wales

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EOPLE living with MND across North Wales will continue to benefit from the success of the region’s MND Care Co-ordination Service, after it was announced that funding had been secured from the local health board. The service was launched by the MND Association in February 2017 thanks to a £120,000 Ice Bucket Challenge innovation grant and a strong, collaborative partnership with colleagues working in the NHS. Since then, the service, which has been delivered by two part-time care coordinators, has made a huge difference to the lives of people living with MND, giving them a single point of contact for MND services in the region. At a meeting of the Betsi Cadwaladr University Health Board (BCUHB) in September, it was announced that they had agreed to fund the service, securing it for the future. One carer who has used the service said: “Following diagnosis we felt numb and unsure how to access MND services despite having a background of working in the health service. We were so fortunate as one of the care co-ordinators, Kathryn Lancelotte, contacted us shortly afterwards, making sure we were linked in to the services we needed. Dealing with the emotional impact of the diagnosis is difficult enough, but having Kathryn arrange for us to see the relevant professionals quickly reassured us that we would be supported as the disease progressed.” The Association’s Regional Care Development Adviser, Kevin Thomas said: “We were quietly confident the posts would be funded as the evidence we had produced demonstrated the difference the service is making to people affected by MND and health and social care professionals. It is also providing opportunities for cost efficiencies and for wider learning.”

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London’s St Paul’s Cathedral provided the backdrop for the Association’s #TakeOverMND message

Association message takes over London’s landmarks

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UILDINGS and landmarks across London provided the perfect backdrop to spread the word about the Association’s #TakeOverMND campaign. Thanks to the generosity of creative production company Projection Artworks, the Association’s distinctive ‘police tape’ style artwork was projected onto buildings across the capital as part of the #TakeOverMND campaign which launched in September with a short film called The Ride. The film, which tells the story of Luke, a man in the prime of his life who is

suddenly diagnosed with MND, has had one million views on Facebook and the Association has been overwhelmed by the response. One follower on Twitter said: “This is brutal, hard-hitting, devastating – just like the condition itself. It’s time we come together to #TakeOverMND.” Another said: ‘’I’ve been that little girl. Wrapped my Dad’s present and unwrapped it for him. And my Dad’s mind stays the same. Heartbreaking.’ The Ride is still available to watch on our website and can be found by visiting www.mndassociation.org/videos

Wheelchair owned by our patron sells for £296,750

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NE of Professor Stephen Hawking’s iconic wheelchairs has provided a surprise cash boost for the MND Association after the lot smashed through its estimated sale price at auction. The wheelchair, which was owned in the 60s by the late Prof Hawking, an Association Patron, who lived with MND for more than 50 years, sold for £296,750 making it the third most valuable item sold in a Christie’s online auction in 2018. It had been expected to sell for between £10,000-£15,000. The money raised from the sale will be split equally between the MND Association and the Stephen Hawking Foundation.

The MND Association’s Director of External Affairs, Chris James said: “Like everyone else we are overwhelmed by the outcome of the auction which is testament to the regard in which our late patron Professor Hawking was held by people around the world. We are so grateful to the Stephen Hawking Foundation and Professor Hawking’s family for their ongoing support of the Association and for the incredibly generous donation we will receive as a result of the auction. “This money is a very welcome boost which will help us to continue to support people with MND and fund research into a treatment and ultimately a cure.”


• Saturday 9 February, Birmingham • Saturday 22 June, Manchester • Saturday 21 September, Exeter • Saturday 12 October, London

2019 regional conferences…

come and meet us

I’m delighted to invite you to one of our forthcoming regional conferences which this year will be held in Birmingham, Manchester, Exeter and London (more details at www.mndassociation.org/regionalconferences). If you are living with MND or are a family member, friend or carer of someone with MND, if you are a volunteer or if you have a personal or professional interest in the MND Association, then these events are for you. Conferences are held regionally to enable as many people as possible to attend. Our staff and vounteers will be attending and look forward to meeting and hearing from you. Sally Light, Chief Executive

The programme Each regional conference programme is tailored to local interests and issues affecting people with MND, so content may vary. However, typically, they will include the opportunity to hear and ask questions about the latest care services and support available and the most up to date information about research. There will also be an opportunity to sample innovative products and services offered by exhibitors and, most importantly, plenty of time to talk to MND Association staff, volunteers and meet other people affected by MND. There is no fee to attend any of our regional conferences. Lunch and refreshments are provided during the day and free parking is available at every venue.

Book your place now You can register to attend in any of the following ways: Web: www.mndassociation.org/regionalconferences Email: conference@mndassociation.org

Telephone: 01604 611837 www.mndassociation.org

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Become a trustee and help us fight back against MND Do you have what it takes to become a trustee? If you are passionate about the Association’s work and are interested in joining the Board of Trustees we want to hear from you. With elections just around the corner, Thumb Print explains more about the process and speaks to three serving trustees about how they became involved.

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OR Heather Smith, the journey to becoming a trustee began in 2009, when her partner, Steve was diagnosed with MND. After his death in 2012, Heather decided to volunteer for the MND Association, as part of the North Wiltshire Group and as a Campaigns Contact. She said: “Over time I felt as though I was becoming increasingly involved with the Association and I was privileged to appear in the Awareness Month campaign, Shortened Stories in 2016. “The same year there was an opportunity to stand as a trustee and I decided to put myself forward as it felt like the right time. I wanted to use my experience to help as many people living with and affected by MND as possible. I have found that becoming a trustee has helped me to develop a range of new skills.” She also said that the Association actively supported those trustees who are living with MND by offering the opportunity to take part in meetings remotely. She said: “It really doesn’t matter what your background is, all that matters is that you want to make a difference.”

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eter Scott-Morgan was diagnosed with MND a year ago and was elected to the Board in July last year. He said: “It’s a tremendous feeling being a member of the Association’s Board of Trustees. On the one hand, my fellow trustees and the directors – who also attend the quarterly Board meetings – are a friendly, welcoming, diverse and genuine bunch; they are not in the least intimidating. “On the other hand, our responsibilities and decisions in terms of the Association’s future are sometimes as critical and far-reaching as it is possible to be. We are, for example, ultimately responsible for the strategy the Association follows and it is this aspect of my trustee role that has become my passion above all others. I have

long held a fascination in the escalating power of hi-tech. “Now, one year after being diagnosed with MND, with my legs paralysed, my arms almost gone, my lung capacity down to 50%, and my neck weakening, I am really fascinated at how hi-tech can help those of us living with MND. What an amazing opportunity to be part of those discussions.”

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ik Sharma is a leading neurologist and neuroscientist at UCL Queen Square Institute of Neurology at University College London with a specific interest in motor neurone disease. He was co-opted onto the Board of Trustees in 2016. He said: “I had interacted with the Association in the past through my work at the MND Care Centre and research. Becoming a trustee has been useful in helping me to understand more about the extraordinary effort that goes into raising every single pound and making sure it is used in the best possible way for people living with MND.” How you can become a trustee? You must already be a member of the Association and be nominated and seconded by existing members. Nominations for election in June are now being taken. You can apply by completing the form which can be found in this edition of Thumb Print or you can visit www.mndassociation.org/ trustees2019. You will be asked to give some information about your knowledge and experience of MND. The closing date for nominations is 18 April, our members then vote and successful candidates are informed of the result prior to the AGM in July. Our new trustees formally take up office at the AGM on 13 July.

Trustee Open Day – 27 March 2019 If you’re passionate about improving the lives of those affected by MND, you could help guide the Association’s future. Our trustees are volunteers who are responsible for ensuring that the mission and long-term aims of the Association are met. Their role is to take a national perspective to meet the needs of people affected by MND. Trustees have the ultimate legal responsibility for directing the affairs of a charity, and ensuring that it is solvent, well-run, and meeting the needs for which it was set up. To find out more about the role of a trustee and to get an overview of the structure and nature of the Association, please come along to our prenomination open day to be held in Northampton on 27 March 2019. To book your place, or for more information, email governance@mndassociation.org or telephone 01604 611 844.

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‘Your support is as important now as it has ever been’

want to start the new year by thanking all of our members for their incredible work and support during 2018. “Whether you are one of our extraordinary fundraisers, one of our loyal volunteers who offers their time freely to support our work or a dedicated campaigner fighting for the rights of those affected by MND thank you for all that you do. “This year, of course, the Association will mark its 40th anniversary – a time to look back at our achievements so far and a time to remember the unique contribution of all of our supporters, not least our founder members. “Forty years ago they faced the devastating effects of MND alone, such was the lack of information available to them at that time. In spite of their own personal challenges and spurred on by an overwhelming and selfless need to help others, the Association was born. “It is testament to them that since then, the Association has grown beyond all recognition, offering help and support to people living with and affected by MND across England, Wales and Northern Ireland. While much has changed over the past 40 years, the work of our volunteers and supporters remains as important now as it was then. “I am immensely proud to be Chair of this amazing charity at what is such an important time in our history. “I hope you will continue to be inspired to support the Association in any way that you can during 2019 as we renew our commitment to our vision of a world free from MND.”

Richard Coleman, chair of the Board of Trustees

Could you be a carer champion? This year we are trialling a volunteer role focusing on supporting carers and former carers of people with MND. Based on local needs, Carers’ Champions will help provide information about services and identify opportunities to connect carers and bring them together. For more information and to find out about taking part please visit our website www.mndassociation.org/carerschampions or telephone 01604 611681.

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yourstories

‘Don’t hesitate to walk through that door’ After being diagnosed with MND in 2011, Phil Wathall decided to write a booklet detailing his personal experiences of MND. Here, he talks about the friendship and help he has received from his local MND Association support group.

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FTER diagnosis in October 2011, I did as many others do and went looking for answers. “I trawled the internet for information, support - anything really - but never thought in a million years a solution would come through a local hairdresser. “The following summer, my partner, Helen sat in her local hairdressers

listening to a conversation when suddenly she heard the unforgettable phrase, ‘MND.’ “Not wanting to miss a trick and be left out, Helen struck up a conversation with one of the ladies called Jackie, who proceeded to tell her about her brother John who had MND and the very good support group he went to at

Mapperley Plains, Nottingham. By this time, I was attending my local support group in Derbyshire and as Helen lived in Nottingham we decided to give it a go. “By the time we had decided to attend and looked up the details of the next meeting, December and Christmas party time was upon us, so not wanting to spoil the atmosphere and gate-crash, we thought the new year would be the ideal time and pencilled it in to the invisible diary. “When we arrived in the car park we sat there for 10 to 15 minutes, a little apprehensive about entering. In for a penny, in for a pound, we reluctantly got ourselves out of the car and made our way towards the building where we were greeted by Godfrey, one of the kindest and funniest men we had met in a long while.

“I can only encourage people not to hesitate as we did when deciding to walk through the doors and to enjoy it as much as we, and many others, do.”

Phil pictured at the Second Thursday Group’s Christmas party

Has an MND Association branch or group made a difference to your life? Send your stories to clare.brennan@mndassociation.org Read more from MND Association branches and groups across England, Wales and Northern Ireland on pages 34 and 35.

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“He welcomed us and escorted us through the door of the Second Thursday Group, finding us seats and organising us a cup of tea each before the start of the meeting. “We’ve not really looked back since, recently celebrating our fourth anniversary of attending and enjoying the Second Thursday Meeting, only missing around three. “I can only encourage people not to hesitate as we did when deciding to walk through the doors and enjoy it as much as we, and many others, do.” The next meeting of the Nottinghamshire Branch’s Second Thursday Group will be held on 14 February. For more information visit www. mnd-notts.org.uk/SecondThursday


yourstories When Teresa May’s partner of 33 years, Lynn Ashby, was diagnosed with MND she turned to fundraising to help her cope. After raising £9,000 in just two years, thanks to the support of family and friends, Teresa wrote to Thumb Print to share their inspiring story.

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y partner Lynn ‘Ash’ Ashby was diagnosed with MND in July 2016 at the age of 59. “She was fit, a volunteer of the year for Help the Aged and loved gardening, walking and a good lunch. She was an army javelin champion and hockey player.

Teresa, centre, pictured with friends at the London to Brighton Cycle Challenge

‘Laughter keeps us going through the difficult days’ “We met 33 years ago in the army in an era when being in a same sex relationship was banned in the forces, so we gave up our careers to be together. We have been lucky to have an amazing, full life and even luckier to be surrounded by some really special friends. “In 2017 we completed some items on our bucket lists and travelled, determined to keep MND out of our heart and heads. “I then decided to give something back to the MND Association and also our local hospice which has held out a comforting arm and wrapped us up. In 2017, we raised £2,290 for the Association’s Southampton Branch through sponsored walks, a fun run and by selling some of my artwork. In 2018, at the age of 56, I decided to take on the London to Brighton cycle challenge. I had never done anything like this before and it was a real challenge, particularly as l have had stem cell therapy on my knee and a hip replacement. My Just Giving page was set up and l started writing about Lynn, talking to friends and writing letters, while cycling locally around the New Forest to get my bum bike-ready. “Our friends Michelle and Virg took part

in a 12-hour exercise event raising £445, Glynn, a former army friend invited 22 others from all corners of the country to a beach barbecue which raised £1000, Jim Ratcliffe from chemicals company, INEOS, sent me £500 after reading my letter, and another friend donated a large single cheque. Our niece Lesley, who has asthma completed a fun run and Jen and Dave Edwards completed two sponsored walks.

electric wheelchair to get around, but underneath the lack of mobility is the woman who has been my best friend, partner and soul mate. We still fight on, the local Oakhaven Hospice has been just amazing. ‘Hospice’ can be a scary word, but Lynn attends as a day patient each week and we call it her spa day as she always has a massage on her hands and feet.

“I have always been a glass half full person while Lynn can be a glass half empty person but together we are a positive fighting team.” A local magazine also did an article which led to three local shops donating. Together with money handed to me by our neighbours 2018’s total reached £7,380. This added to the money raised in 2017 makes more than £9,600. “I have found that committing to fundraising helps me to deal with the thought MND is slowly trying to take my partner away from me. She has a rig fitted, uses a ventilator at night and needs her

Teresa, pictured left and her partner, Lynn

“I have always been a glass half full person while Lynn can be a glass half empty person but together we are a positive fighting team. We keep laughing and even though there are many difficult days, Lynn is alive, has a mind of her own and literally is living in the moment.” www.mndassociation.org

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Michael sets sail on a fundraising trip to remember

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ETTING sail on a tall ship adventure turned into a unique fundraising opportunity for one man who is living with MND. Michael Martin was given the chance to sail from Cardiff to Poole on board the Jubilee Sailing Trust’s ship Lord Nelson, after being donated a place by Jacquie Wheeler, an MND Association fundraiser whose employer, Barclay’s, sponsored the ship last September. Jacquie approached the Association’s West Yorkshire Branch to find a willing candidate and having often dreamed of sailing on board the Lord Nelson after seeing her in port in Oban in 2014, Michael quickly took up the offer. He said: “I decided I would use the trip to do some fundraising of my own. I had seen a newspaper article showing someone in a wheelchair getting to the crow’s nest on the Lord Nelson. I am terrified of heights, so thought I would challenge myself to do the same. “We sailed from Cardiff to Poole from 20-24 September. Everyone sails as crew on the ship, so it’s no luxury cruise! I was assigned to a watch team with six others, one of whom, Robin, was designated as my buddy.  As it happened, the weather conditions at sea were so atrocious that we were port-bound in Cardiff for two days. These two days were not wasted as we were quite literally shown the ropes and there are hundreds of Michael on board Lord Nelson them on a tall ship. This was also my opportunity to get to the crow’s nest so that I could enjoy the rest of the voyage. “We set off early on 22 September. The weather wasn’t too bad going down the Cornish coast until we reached Land’s End when we were in the midst of a gale. Tallships don’t have stabilisers so the ship’s motion was quite ‘interesting’ at this point.  After we

Michael is hoisted up to the crow’s nest

rounded Land’s End we picked up a following wind and the ship went at double speed, so in the end we arrived at Poole early. “I can’t praise the crew enough for the care I was shown – my buddy Robin was a stalwart and everyone else was there to lend a helping hand when my wheelchair was careering over the deck in various directions. I wasn’t sure how I would cope with this voyage, but I should not have worried.  Many thanks to all who supported my fundraising as well as all those who looked out for me during the voyage. I have raised £1,800 for the MND Association.” For more information about the Jubilee Sailing Trust visit www.jst.org.uk Do you have a story to share about a fundraising adventure? Email clare.brennan@mndassociation.org

The smile says it all as Tim tries surfing for the first time

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Tim enjoys surfing for the first time

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MAN from Jersey who is living with MND was able to experience the joy of surfing for the first time thanks to the support of a charity based in the Channel Islands. Tim Phillips was diagnosed with MND in 2008 after experiencing problems with his speech and pain in his hands. He explained: “My Mum thought it was arthritis, but we decided to go and see the doctor. He did a lot of tests and I was finally diagnosed with MND in June 2008. We were shocked as we thought my symptoms were to do with a fall I had the previous year, but we were determined to make the best of things. “One of my care nurses is a keen surfer and a volunteer for the charity, Healing Waves. She put my name forward and I was accepted. It was a wonderful experience and I am hoping to do it again. I would also like to do a sky dive, which would be really exciting.”


Professional education opportunities for 2019

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ALKING about end of life can be challenging for those affected by motor neurone disease and the professionals who support them. In 2019, Let’s talk about end of life in MND is the main theme of the MND Association’s masterclass programme for professionals. Palliative care specialists Professor Christina Faull, Dr Idris Baker and Becky Whittaker will facilitate six events across England, Wales and Northern Ireland. Professionals can register via the Association website events pages. Due to demand, we will also be running additional masterclasses on cognitive change and respiratory management. Since 2017, more than 500 professionals have attended masterclasses, which are held regionally to bring education closer to professionals. We will continue to offer our education bursary, which

Make 2019 the year you join #TeamMND

I means professionals can apply for up to £250 to support continuing professional development activities. Our education newsletter is distributed to more than 2000 professionals worldwide and we now reach subscribers as far afield as Australia, New Zealand, the USA and Canada. Professionals can sign up via our education pages www. mndassociation.org/professionals

For the latest from our Care Information Team please turn to pages 19, 22 and 23.

F your New Year’s resolution has been to get involved in raising money for the MND Association you’ll find all the inspiration you need inside our brand new Events Diary, free inside this edition of Thumb Print. As well as suggesting ways for you to get involved, you’ll also be able to read some incredible stories from our fundraisers who go to extraordinary lengths to raise money to support the Association’s work. Whether you’re interested in signing up for a run, walk, cycle or swim – or perhaps something less demanding – our Events Diary will give you all the information you need. And if you do decide to join #TeamMND, the MND Association’s fundraising team is here to support you every step of the way. If you’d like to discuss getting involved, then please chat to a member of the team who will be happy to help. Contact us on 01604 611860 or email fundraising@ mndassociation.org

Sign up to the register and help us learn more about MND

In a clip from video, Prof Al-Chalabi said: “There are many benefits to having a register. The most important is that by understanding where people with MND live and how many are affected, we can compare that number with the services available. If there are areas in the country that don’t have sufficient services we can lobby for more. The other primary use is for research – we can see how many people have the disease at any one time.” Prof Kevin Talbot explained that the MND Register was a joint project between King’s

He said it was vital to build up the level of data we have about people living with MND, adding that the register would play a vital role in that work. People with MND can join the MND Register through their clinic or by registering themselves online.

Prof Kevin Talbot

Featuring Professor Ammar Al-Chalabi from King’s College London and Professor Kevin Talbot from the University of Oxford, the video explains more about the reasons for setting up the register and why it is so important that as many people living with MND sign up.

College and the University of Oxford.

The animation will provide a step-by-step guide about what’s involved in signing up for the MND Register and what information is captured. Both the video and animation resources will be available on our website early in 2019 and we will keep you updated in our Spring edition. We are grateful for the generous support of the Betty Messenger Charitable Foundation and a family trust that wishes to remain anonymous in funding this project.

Prof Ammar Al-Chalabi

A new video and animation are currently being developed to explain more about the importance of the MND Register.

For more information visit www.mndregister.ac.uk www.mndassociation.org

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2018: Our year in numbers

As we look ahead to the start of a brand new year, we reflect on some of the Association’s highlights from 2018 and the difference we have been able to make to the lives of people living with MND thanks to your support.

1,200 of the world’s leading

MND researchers from 39 countries attended the Association’s 29th International Symposium on ALS/MND

1,668,742 is the number of

unique page views our website www.mndassociation.org had during 2018

87 groups and branches offered support to people living with MND in communities across England, Wales and Northern Ireland

9,384 people are members

37,392 is the number of

likes on the MND Association’s Facebook page

480 Association visitors and support volunteers offered oneto-one help for those affected by MND

7,381 posts were published

1 new care centre in Stoke-on-

80,208 pieces of our

79 councils have now signed up to the Association’s MND five point Charter

of the Association and are the driving force behind our work

£2,013,319* has

been claimed through the Association’s Welfare Benefits Service

on our online care forum

Trent opened during 2018

1,082 people living with

MND have signed up to the Association’s MND Register, the first central database of people diagnosed with MND

£1,107,228 in grants was

awarded to people affected by MND

information were accessed during the past year

More than 2000 samples have now been sent for sequencing as part of Project MinE

1529 people with MND were

supported by the Association through an equipment loan in 2018

*£2,013,319 was the total amount of unclaimed benefits people affected by MND were entitled to. Thanks to the Association’s Welfare Benefits service, this money has now been claimed.

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‘We are all dedicated to solving the MND puzzle’ Nick Cole, the MND Association’s Head of Research reflects on developments in MND Research during 2018 and explains why 2019 could be an important year when it comes to clinical trials.

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T has been a year since I became Head of Research at the MND Association, a milestone which provides a great opportunity for me to introduce myself and explain more about what has happened in the world of MND research during 2018. “It has been wonderful to engage with so many researchers who are dedicated to solving the MND puzzle. Not so long ago I too was immersed in MND research, heading an MND laboratory at Macquarie University in Australia. My commitment to MND research and passion for kitesurfing led me to organise Kite the Reef, a world record breaking expedition to raise awareness and funds for MND research. After moving back to the UK, I knew I wanted to stay in this field and being able to work for the MND Association offered an incredible opportunity. “One part of our team focuses on research grants; processing researchers’ applications for funding, which are then rigorously peer reviewed by international advisory panels who recommend the very best for funding. Once funded, the team then monitors the progress and spending of every grant throughout its duration. As of 31 December 2018, our research portfolio consisted of 91 grants, investigating causes, models, treatments, biomarkers, and improving healthcare. “Another part of our team looks after our programmes and partnerships. These include the MND Register which aims to capture the details of every person living with MND in England, Wales and Northern Ireland, helping us to improve and direct care to those places where MND is more prevalent, and to guide future research into the potential factors that might cause the disease. “Every person living with MND in England, Wales and Northern Ireland is being encouraged to sign up and you can find details of how to get involved on this page. “Another of our biggest projects is MIROCALS, one of the five clinical trials into MND in the UK, which investigates safety and effectiveness of low-dose Interleukin 2 as a potential treatment. Over half of those recruited have entered the main part of the trial. “This year will be very exciting when it comes to new clinical trials, as at least two new studies are expected to start recruiting participants soon. To make sure these results and other research news is communicated to the public, we put together a monthly e-newsletter and you can sign up at www.mndassociation.org/ mnd-research-newsletter. “Throughout the year, we were incredibly busy organising the International Symposium on ALS/MND; a scientific conference where researchers and healthcare professionals from across the More information For more information about the research the MND Association is involved in please download our newly-updated Information Sheet E: Research we Fund 2019 from www.mndassociation.org To find out more about the MND Register visit mndregister. ac.uk. You can also read more by turning to page 15. More information about MIROCALS can be find by downloading Information sheet DA: MIROCALS from www.mndassociation.org/research/publications/ informationsheets

world come together to share their work. “It’s been an amazing year, with many highs and some poignant moments, including the loss of two big players in Australian MND Research who I was honoured to call friends – Ian Davis from Fight MND and Adam Regal from Fire Fighters Climb for MND. Both of them sadly died from MND. “Ian and Adam, and all those like them, continue to inspire me every day. I am immensely proud to be part of the MND Association as we work towards our vision of a world free from MND.”

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www.mndassociation.org

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Support for those affected by MND

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AMILIES for the Treatment of Hereditary MND (FaTHoM) is an initiative led by the Oxford MND Care and Research Centre to bring together the community of families affected by inherited (genetic) forms of MND and frontal-temporal dementia (FTD). On 16 April, the next FaTHoM meeting will take place in Oxford, with expert talks on issues important to people affected by inherited MND/FTD. Anyone whose family has been affected by an inherited form of MND/FTD is welcome to attend. Free online registration is available at bit.ly/2TAxtSA If you have any questions, please contact fathom@ndcn.ox.ac.uk

Rugby legend ‘humbled’ by honour

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UGBY legend Doddie Weir, who is living with MND, has been awarded an OBE in the New Year Honours List. Doddie, a former British and Irish Lion and Scottish international, will receive the honour for services to rugby, MND research and the Borders community. In 2017, Doddie announced that he had been diagnosed with MND and since then has set-up the My Name’5 Doddie Foundation to support people living with MND in his native Scotland, as well as across England, Wales and Northern Ireland. In 2018, the MND Association announced it had received a £100,000 donation from the Foundation to support people living with MND and their carers. In a tweet, Doddie said: “I am humbled and honoured, thank you to everyone.”

Winners celebrate the new year in style

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HANK you to all our members who entered and sold tickets for our Christmas Raffle helping to raise more than £105,000 to support people living with MND, their carers and families. Congratulations to all our prize winners. Gemma Hammond won the first prize of £5,000; the second prize of £1,000 went to Christine Drain and Margaret Cooper won the third prize of £500. For the full list of winners, please visit www.mndassociation.org/raffle

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Richard Lodge, pictured left with his close friend, Brian Swinyard

‘Poetry has always been my release, my solace and saviour’

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ORMER cancer surgeon Richard Lodge has joined forces with one of his closest friends to create a unique book full of poetry and inspiring photographs.

One day I was a consultant surgeon, responsible for the provision of cancer services to more than 1.4 million people, the next I was diagnosed with MND.” Richard, who was diagnosed with MND last year, has created the book, called Two Become One with his friend, photographer Brian Swinyard who is living with sarcoma, a rare form of cancer which affects bone and soft tissue. The money raised from the sale of the book is being donated to the MND Association and Sarcoma UK to thank both charities for their continuing support. Richard said: “One day I was a consultant surgeon, responsible for the provision of cancer services to more than 1.4 million people, the next I was diagnosed with

MND. It was devastating and has had a huge impact, not just on me, but my whole family. “Poetry has always been my solace, my release and my saviour and has helped me to cope with situations throughout my life.” While Richard was coming to terms with his diagnosis of MND, his friend Brian had also learned that he had sarcoma. The idea for the book gathered pace when Richard was contacted by Brian’s wife Angela who suggested they should work together ‘to make some memories.’ Richard said: “Brian has been my friend forever and is an international photographer so we decided that a book could be a unique way of combining our work. “The book is a celebration of life and is designed to give the reader the space to have their own thoughts and feelings. It is full of hope.” Two Become One is available to buy at www.amazon.co.uk


Information updates Information sheet 2C – Primary Lateral Sclerosis (PLS): This sheet has been revised to ensure it remains up to date. The sheet provides information on this rare, slow progressing form of MND and managing symptoms.

Finding your way with bereavement: We have converted our information sheet on bereavement support into an A5 colour booklet. This includes information about support for family members and friends after the death of a loved one, but also shared experience from others who are finding ways to cope with grief. See pages 24 and 25 for more details. Information sheet 1B – Health information in other languages and formats: This sheet has been updated to explain how to get information in other languages or formats such as braille, audio or large print.

Information sheet 6B – Complementary therapies: this sheet has been revised to ensure it remains up to date. It provides an overview of some complementary therapies that some people with MND find helpful. We are pleased to have gained endorsement from the Complementary and Natural Healthcare Council (CNHC) for this information sheet. Information sheet 7B – Tube feeding: This sheet went through a major version change in 2017 to include questions about aftercare following insertion of a feeding tube. It has now been checked and updated to ensure it remains accurate.

has been updated to better help people with MND communicate their needs to hospital, hospice and care agency staff.

Motor neurone disease checklist To help you manage your condition and think ahead

Introduction to motor neurone disease (MND): Our short overview about MND has been revised to ensure it remains up to date. This A5 guide is designed to help people when first diagnosed.

Understanding my needs:

MND Checklist: This write on questionnaire has been updated to better help people with MND think about their future care needs.

a personal record to help you support me with motor neurone disease

Understanding my needs: This write-on short booklet

You can download our resources at: www.mndassociation. org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@ mndassociation.org

The perfect stew for cold winter nights Eating and drinking is a pleasure we all take for granted, but one which can prove challenging for those living with MND. To help put the fun back into cooking, the MND Association has created an eating and drinking guide featuring hearty, wholesome recipes which can easily be adapted to suit individual needs. This Provençal Bean Stew is nutritious and easy to prepare, perfect for cold winter nights.

Provençal Bean Stew Preparation time: 10 minutes Cooking time: 30-40 minutes Serves: One to two people Ingredients: 400g tin of haricot beans (plain, rather than in sauce) Two onions, sliced One red pepper, de-seeded and sliced Two cloves of garlic, crushed

400g tin of chopped tomatoes Two tablespoons of tomato puree One teaspoon of chopped or dried marjoram One bouquet garni or one teaspoon mixed herbs Two tablespoons of olive oil Up to half a pint of vegetable stock Salt and pepper

Method: 1. Fry the onions until soft 2. Add the tinned tomatoes with their juice, plus the other ingredients and a little additional stock. 3. Simmer until all the ingredients are soft and tender. This may be easy enough to eat once cooked, but if you find the beans too husky, mash or blend until smooth.

Have you enjoyed this recipe? Don’t forget the MND Association’s guide Eating and drinking with motor neurone disease is available to download or order from our website www. mndassociaton.org by clicking on the Info Resources button at the top of the page and following the links. Have you got a recipe you would like to share with our readers? Email clare.brennan@mndassociation.org

www.mndassociation.org

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‘I wanted to prove that people living with MND are not alone’ I N AUGUST last year, Len Johnrose made the very brave decision to tell the world that he had been diagnosed with MND. In a moving interview with BBC Radio Lancashire, the former professional footballer laid bare his innermost feelings about being diagnosed with MND and how the news had changed his life and the lives of his wife, Nadine and children, Elizabeth, Chanel and Patrick forever. He explained: “I got to the point where I just had to talk about it. I was sick of people asking how I was and others saying, ‘He’s fine,’ when I wasn’t fine at all. I was struggling and in a really dark place. I just had to speak out.” The response to Len’s interview was nothing short of overwhelming, with people the family hadn’t spoken to for many years reaching out to offer their support. Len said: “It was amazing - I wasn’t expecting it at all. For the first time I felt as though I could do something, that I could raise awareness of MND and prove to others they are not alone. It has made a huge difference to my whole family.” Len’s football career began when he joined Blackburn Rovers on a YTS scheme as a promising 14-year-old, earning around £50 a week. “I was well into football as a child,’ he said. “After my debut, my earnings rose to about £135 and it was fantastic – I thought I was a millionaire! I stayed at Blackburn until I was 21 and then went on to Hartlepool and Bury. I had a great career, I was very lucky.” Eventually though, Len decided to turn his

hand to something completely different, training in Cardiac Rehabilitation before studying for a degree which led to him becoming a teacher. It was during this time that he started to experience symptoms of MND. He said: “I started having tests in August 2016, but in reality I think I had been experiencing symptoms for about three years. “I had started to experience weakness in my hands and felt incredibly tired all the time. Over time I found I was having trouble walking. I was sent for MRI scans and was diagnosed with MND in 2017. “It was a huge blow, but for me, not knowing was worse. Like many people, I had heard of Stephen Hawking but at that point I didn’t really know what MND was. “To begin with, it was Nadine and I against the world as we decided not to tell the children, but it was a real struggle for us all. “I went through some very dark times and so did my family. Speaking out has enabled us to talk freely about MND and helping to raise awareness and money for the MND Association has been fantastic. I am so grateful to have this platform.” In December, Len also managed to fulfil a lifelong ambition of jumping out of a plane, raising more than £2,500 for the Association. He said: “It was absolutely amazing, completely exhilarating. I now have to think of something else to do, but it will have to top that!”

If you need support, the MND Association is here to help – contact MND Connect for guidance on 0808 802 6262. A range of information can be viewed and downloaded from our website at www.mndassociation.org/careinfo This includes our guide So what is MND anyway? to help young people affected by MND, and When someone close has MND, a workbook for children aged between four and 10.

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“Speaking out has enabled us to talk freely about MND and helping to raise awareness and money for the MND Association has been fantastic.� www.mndassociation.org

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Determined to ma T

Cath Muir

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HIS year more people living with MND than ever before have taken part in fundraising events to raise money for the Association, demonstrating their incredible bravery and courage. Supported by family and friends, people living with MND were able to take part in some of the biggest fundraising events of the year, including the Great North Run, Royal Parks Half Marathon and the Great South Run. A group of #TeamMND runners volunteered to push five-time marathon runner Phil Rossall around the 10-mile Great South Run course in Portsmouth. Phil, who has raised more than £20,000 for the Association along with his family and friends, said: “I have seen and benefited from the fantastic work the Association does. I absolutely trust the Association to make the best use of the funds raised, to support vital research, provide care for people with MND and support them to live as full a life as possible. I have seen the differences made thanks to the support of my local branch and the Association visitors. They make a real difference to our lives.” 79-year-old David Cooper also

completed the Great South Run in his wheelchair, raising more than £1,700. The great-grandfather was diagnosed with MND in 2013 but hasn’t let that stop him from completing a half marathon, a 10k and the 10-mile run. MND mainly affects David’s legs so he clocked up 300 miles training in his wheelchair, both in the gym and out on the road, so he could propel himself around the courses using his arms. He said: “I got into conversation with disabled sportsmen involved with British teams. I carried on training in the gym, and by talking to them became inspired to see what I could do outdoors. I really, really enjoyed the experience, both during training and on race days.” 58-year-old Cath Muir and 38-year-old Dean Halkes, who are both living with MND, were pushed by family and friends when they took part in the Great North Run in Newcastle last September, raising thousands of pounds for the Association. Cath said: “In the year before I was diagnosed with MND I had a very good idea what it was. We looked for every possibility that it might not be MND, but knew we were grasping at straws. I had


make a difference always wanted to do the Great North Run but never quite got around to it. I said, ‘If I am not diagnosed with MND I will get fit and do the next Great North Run.’ That didn’t happen so I threw myself into doing challenges – jumping out of a plane, flying loop-the-loop in a glider, organising an annual dance to raise funds, travelling coast-to-coast on a tandem. After my son’s partner took part in last year’s Great North Run for the Association, I decided to do it in my wheelchair.”

“I absolutely trust the Association to make the best use of the funds raised, to support vital research, provide care for people with MND and support them to live as full a life as possible.” Team Dean tackled a chilly race in just their underwear after enjoying warmer weather when they completed the Brighton Marathon back in April. Dean Halkes, who previously ran the Great North Run 17 years ago, said: “The MND Association is a fantastic charity that does everything it can to support those living with MND. To ensure the charity

can continue to support others and raise money for vital research, we felt it was our duty to take part.” Carol Johnson made history when she was pushed around the Royal Parks Half Marathon in her wheelchair. Carol, who is living with MND, was one of the first people to take part in the event in a wheelchair and was pushed around the course by her running partner Selwyn Noel. Carol smiled all the way around the 13.1 mile course, waving at spectators who were cheering them on. After the race she said, “I felt great, I was on top of the world when I completed it! I couldn’t have done it without my partner in crime - Selwyn. He is the best! “I have learnt that you cannot let MND rule your life, you have to take charge and enjoy life to the full, as there will be no second chance.”

Inspired to take part in a fundraising adventure during 2019? Take a look at the MND Association’s Events Diary, enclosed within this edition of Thumb Print.

Carol Johnson

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“This booklet really captures what can be said about grief. I really like the quotes from other bereaved people.�

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Finding your way with bereavement W

e all experience bereavement at some point in our life, yet it can be difficult to find appropriate support when it happens. This is especially true with MND, where the complexity of the disease can leave bereaved families feeling bewildered and isolated. Bereavement usually causes a wave of extreme emotions. However, people who have gone through a similar experience often want to help others with personal support and sharing. This can help us realise we are not alone, in whatever way we choose to grieve. Following feedback, we wanted to make our bereavement support information sheet warmer, more approachable and reflect what families were telling us. We have developed Finding your way with bereavement in response. The booklet is full of images and quotes from people who have lost loved ones and discusses some of the common reactions felt with grief. In highlighting these often confusing emotions, past carers and family members have been able to reassure readers they are natural and experienced by many. Carers and bereaved carers in our information review group kindly shared their experiences with us, generating many of the quotes in the booklet. We are very grateful for their input. Members of the group noted it had helped them to understand the types of emotion often felt during bereavement. One member said: “Grief is very individual and not everyone will go through every emotion, but an awareness of these emotions is valuable.” A bereaved carer who reviewed the content said: “I found the comment about relief being a natural feeling very helpful, as that’s exactly what I felt when

my husband died – and I felt so guilty afterwards.” Sharing experiences can also reveal things that may have been hidden from view. Another reviewer said: “It was really helpful to read that cognitive change at the end of life can cause the person to be angry, and that it wasn’t their true feeling.” As well as the common emotions of grief, the booklet discusses the impact of anticipatory grief throughout the course of the disease and also highlights where to find support. We have provided a brief overview of practical tasks that need to be completed when someone dies, with references to where to find more detailed guidance. There is also a new section on supporting children and young people. Finding your way with bereavement has received positive feedback from experts in the field. Gwyneth Peden, Bereavement Co-ordinator for the Northern Health and Social Care Trust in Northern Ireland said: “This booklet really captures what can be said about grief. I really like the quotes from other bereaved people.” Becky Popperwell, Media and Campaigns Manager at Cruse Bereavement Care, feels that the booklet, ‘has lots of great information about bereavement and grief.’ As well as updating our information on bereavement, we are working with AtaLoss.org, who provide a UK-wide ‘one stop shop’ website to signpost bereaved people to support. We want to help increase the number of services they list, so support for bereaved people is easier to find, when it is needed. If you know of a service in your area, please encourage them to contact Vicky McQuarrie at data@ataloss.org, who would like to hear from them and help to organise their entry onto the database.

You can download Finding your way with bereavement by selecting the option for guides at: www.mndassociation.org/careinfo. Or order a printed copy from MND Connect: Telephone: 0808 802 6262 Email: mndconnect@mndassociation.org. Anyone living with MND, Kennedy’s disease, carers and previous carers who wish to join our review group can contact us at: infofeedback@mndassociation.org

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Continuing the fight for Every Breath

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EETINGS are being held with key healthcare officials to discuss possible solutions to the problems people living with MND are facing when it comes to accessing vital respiratory care in Sussex. Three years ago, a blueprint for The Non-Invasive Ventilation (NIV) Service was created with support from the MND Association, to ensure people living with MND could access comprehensive assessments and care in their own homes. A three-year contract to provide the service was awarded to three local NHS Trusts, with an anticipated start date of November 2015, but since then it has been subject to severe, on-going delays. As an interim measure, people living with MND have been offered appointments in London, but since January last year 23% of those affected have already declined referral as the unit is just too far away. In a bid to address the gap, the MND Association launched a campaign called Every Breath, appealing for the service to be launched to ensure that people living with MND can still access the care services they need without having to leave the county. Thanks to the overwhelming support of volunteers from East Sussex, West Sussex North, and West Sussex South, as well as other key activists, 12 MPs have already pledged their support for the campaign including Conservative MP for Chichester Gillian Keegan, Labour MP for Hove and Portslade Peter Kyle, and Green Party MP for Brighton Pavillion, Caroline Lucas. As a result of a campaign featuring Liz Currier, who is living with MND and is affected by the gap in services, the Chief Accountable Officer for the Central Sussex and East Surrey Commissioning Alliance

Liz Currier and her husband, Ken

has agreed to meet with the MND Association’s Regional Care Development Adviser Jane Giles, and Rachel Thomson from the Sussex MND Care and Research Network to discuss the issues and how they can be resolved. Jane has already met with one of the Deputy Managing Directors of the Commissioning Alliance who has already clarified that at least one local provider has given a commitment to deliver a local service in 2019/20 and more information is

now being sought. We would like to take this opportunity to thank our members and supporters for taking the time to email their MPs, sharing posts and social media and contacting the Association with details of their own personal experiences. There will be an update on our progress in the next edition of Thumb Print. For more campaign news turn to pages 28–30

Make a date for your winter flu jab

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F you still haven’t had your winter flu jab, make sure you make an appointment with your GP today. The Department of Health is advising that people with certain health conditions, including motor neurone disease (MND) have a free flu jab each winter. Those who care, or live with people who have MND, should also speak to their GP about getting a flu jab at the same time. For more information contact your GP or visit your local pharmacy.

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How your gift could offer others hope

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RE you interested in finding out more about MND research and the difference a gift in your Will could make in the fight against MND? The MND Association hosts regular legacy events to give people the chance to learn more about the science behind the fight against MND and why gifts left in Wills are so important to the Association’s future. During the visits, those taking part are invited to join in a behind the scenes tour of cutting edge research laboratories as well as having the opportunity to meet some of the country’s leading experts in MND research. Association supporter Vicky Paeschel, who has attended one of the events said: “The presentations were really informative and interesting and being able to visit the labs was a fascinating experience. Every day, I think of all the families still having to go through the same devastating experience we did 10 years ago, so seeing how hard scientists are working on finding effective treatments and

Visitors learn more about the science being funded thanks to generous gifts left in Wills

ultimately a cure was quite reassuring. It made me realise that there is still a long way to go and lots more funds are needed to ensure that scientific breakthrough will happen sooner rather than later. It’s great that events like these make sure lots more people are considering leaving a gift in their Will for

future research.” If you would like more information about leaving a gift in your Will, or if you would be interested in attending a legacy event in the future, please contact Emma Fellows on 01604 611898 or download a pack from our website at www.mndassociation.org/wills

Gifts in Wills

hope A gift in your Will could give

of a world free from MND

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

www.mndassociation.org

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Signing up to support people living with MND

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OUNCILS which have already pledged support for the Association’s MND Charter are now using it to help improve the lives of those affected by MND in their communities. The MND Charter, which was first launched by the MND Association in 2012, is a five-point plan which sets out what good care for people living with MND should look like. Since then, some 30,000 individuals have signed it as well as 79 councils from across England, Wales and Northern Ireland. The next step is to encourage those councils to use the Charter as a platform for introducing new ways to support people living with MND, their carers and families, at a local level.

“Timely diagnosis is clearly important and, while that might not be totally within our power, the council does have the power to scrutinise the NHS.” Surrey County Council adopted the Charter in 2016 and is now working alongside the Association’s Regional Care Development Adviser, Jane Giles to improve its work on housing adaptations. The council has expressed a willingness to work on creating area-based workshops with occupational therapists, home improvement agencies and grant officers from the district and borough councils. Jane will also be speaking at a meeting of the council’s forum for newly qualified Occupational Therapists in due course. In July last year, Hartlepool Borough Council’s Adult Services Committee voted unanimously to adopt the MND Charter after being approached in March by Sandra Hamilton who lost her husband, Brian to MND. As a result, the council has now appointed a designated social worker who will help people living with MND access social and emotional support as well as personal care. The committee is now taking the Charter to the council’s Health and Well-being Board to discuss with its health partners. Members of Cambridgeshire County Council with volunteers from the MND Asociation

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LYMOUTH City Council became the 77th council to adopt the Association’s MND Charter in September. The council’s Cabinet Member for Health and Social Care said: “I am delighted our council has agreed to adopt the MND Charter. It is vital that more people are aware of the needs of people with MND so those living with this devastating disease can maximise their quality of life and die with dignity.” The Charter adoption was due to the longstanding efforts of volunteers Douglas Kerr and Ron Wheeler and supporter Kevin Sprosden who first approached the council at the beginning of the year. Kevin said: “I’m a Royal Navy sailor, but due to an injury I’ve had surgery and am currently having physiotherapy. During this time I decided to focus on helping the community and local charities. I was approached about the possibility of bringing the MND Charter to Plymouth and agreed to help. Having read more about MND I realised what a terrible disease it was.” The council unanimously voted to adopt the Charter on 17 September.

The Norfolk Clinical Commissioning Groups sign the Charter

Dorset County Council sign the Charter

West Sussex County Council celebrate signing the Charter

West Sussex County Council adopted the Charter on 6 September 2018. Cabinet member for Adults and Health, Amanda Jupp signed the Charter at an event attended by people living with MND, family members and carers. She said: “It is vital we raise awareness of MND so people understand what a devastating disease it is. Together we can make a real difference for people affected by MND.” Promoting educational resources among health and social care professionals and raising awareness of the Norfolk MND Care and Research Network will be among the priorities for five Clinical Commissioning Groups (CCGs) who

unanimously voted to adopt the Charter in October. Sue Heal, Campaigns Contact for the Norfolk, Norwich and Waveney Branch presented the paper at the meeting which saw the Great Yarmouth and Waveney, North Norfolk, South Norfolk, Norwich and West Norfolk CCGs formally agree to support the Association and its work. Dorset County Council has adopted the MND Charter following a campaign by the West Dorset Branch of the MND Association. Mary and Steve Bates lost their son to MND several years ago and wanted to make the council aware of how delays in processing applications for home

adaptations and carers’ assessments could impact on family life. Mr Bates said: “My son Spencer had to wait several months for his request for a stair lift to be granted. By the time it arrived he was too weak to use it. I wanted the council to recognise the difference between MND and other degenerative diseases in that MND can progress so quickly and speed of provision is of the essence.” An action plan, designed to take the MND Charter forward is being developed by Cambridgeshire County Council after it was formally adopted in July. Speaking at the meeting of the full council, Councillor Anna Bailey said: “Timely diagnosis is clearly important and, while that might not be totally within our power, the council does have the power to scrutinise the NHS. We can ask what they are doing to make sure the Charter is supported within their system.” The Association would like to thank all of its volunteers for their hard work and commitment in achieving so much on behalf of people living with MND across England, Wales and Northern Ireland. To find out more about the MND Charter and how you can get involved visit www.mndcharter.org www.mndassociation.org

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Festive fun and friendship at branch’s Christmas party

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UN, family and friendship were all on offer at a Christmas party organised by the West London and Middlesex Branch in December. Branch Patron Jeremy Vine and his daughter Anna hosted a special edition of his hit TV show Eggheads in which everyone took part while The Old Standards Jazz Band, featuring Keith Lawrence, who is living with MND, performed live. The final round of the Eggheads quiz was closely contested by branch volunteers Nandita Jain and Ross Marshall and Ross narrowly won. Branch chair Janis Parks said it had been a wonderful event which was organised to thank members for their support throughout 2018. For more news from the Association’s branches and groups turn to pages 34 and 35.

MPs hear about the latest in MND research

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REATER Government support for trials into possible new treatments for MND is needed according to the MND Association’s Director of Research Development, Dr Brian Dickie. Speaking at a meeting of the All-Party Parliamentary Group (APPG) on MND last October, Dr Dickie spoke to MPs about the research projects which are currently being funded by the Association. But he also raised serious concerns about the capacity for research within the UK health system and called for greater assistance from the Government. More than a thousand of the MND Association’s supporters contacted their MP about the APPG meeting and the Association has now written to the Secretary of State for Health and Social Care Matt Hancock to seek a meeting to discuss the matter further.

Professor Chris Shaw, Professor of Neurology and Neurogenetics at King’s College London, who also attended the meeting, spoke about the link between genetics and MND. He reported that the number of gene discoveries in MND has increased dramatically over the last few years and gene therapy offers future hope for those affected. Liz Tredget, who is living with a genetic form of MND, spoke about having MND in her family, losing her brother last year at the age of 54 and the implications for her children and grand-children. Liz spoke passionately about the urgent need for more research into MND and the willingness of people with MND to be involved. Looking back over a year of MND research: Page 17

Campaigning for better access to Universal Credit

T Top: Branch members enjoy the Christmas party Centre: The Old Standards Jazz Band, featuring drummer Keith Lawrence who is living with MND Bottom: Branch Patron, Jeremy Vine pictured with Sarah Ezekiel, who is living with MND

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HE MND Association is working together with more than 80 other charities to ensure people living with MND can get better access to Universal Credit. In November, the Government announced plans detailing how those claiming benefits will move over to Universal Credit from July through a process known as ‘managed migration’. As part of the process, existing claimants will have to make a new application for Universal Credit – something the MND Association believes is wrong. The Association believes people

living with MND should be transferred onto Universal Credit automatically without the need for a new claim. As part of the Disability Benefits Consortium, a coalition of more than 80 charities, the MND Association will continue to campaign for better access to Universal Credit. If you need any advice or support regarding Universal Credit or any other benefits, you can contact the Association’s Benefits Advice Service by calling free on 0808 801 0620 in England and Wales or 0808 802 0020 in Northern Ireland.


Fundraisers go to extraordinary lengths to raise

£100,000 A

DECADE of fundraising has led to one family raising more than £100,000 on behalf of the MND Association in memory of their beloved husband and father. Stephen Collins sadly died from MND in 2008 and since then his wife Valerie and two sons Pete and John have dedicated much of their lives to raising money for the Stephen Collins Tribute Fund. Thanks to their extraordinary efforts, the family smashed through their £100,000 target in October last year.

“We do not see ourselves as inspirational – we are just trying to do our bit to support other people affected.” The family said: “Fundraising for the MND Association has given us a way of keeping Stephen’s memory alive. We always said that we would fundraise by doing things he would have enjoyed being part of and we feel that we have. The Stephen Collins Tribute Fund is our way of trying to support all those who have been affected by MND and we will continue to try and

Valerie Collins pictured with her sons, Pete, left and John, right

raise more until we find that elusive cure.” Over the years, the family has taken part in hundreds of fundraising events, from quiz nights to Tea4MND, climbing mountains to running and cycling. The family has always been keen to share their experience and to support others with their fundraising goals. Pete said: “We do not see ourselves as inspirational – we are just trying to do our bit to support other people affected. There are many fundraisers and people affected by MND and we just hope we can continue to support them all in any way we can.”

G Pete Collins who set-up Tea4MND, raises a mug to his father, Stephen

OLFERS at Beeston Fields Golf Club in Nottingham have helped raise £100,000 for the MND Association in memory of their former captain and friend Eric Gibson who died from MND in 2011.

Bob Hands, Mark Philpott and John Dixon decided they wanted to raise £100,000 in Eric’s memory by organising an annual Charity Golf Day at the golf club. Their annual fourball competition, which was followed by a gourmet meal and charity auction, proved to be so successful that it took them just eight years to reach the £100,000 target. All funds raised from the Eric Gibson Charity Golf Day have now been donated to the Nottinghamshire Branch of the Association in order to improve the care and support for people who are living with this devastating disease. The branch would like to thank Bob, Mark and John and all the companies involved who have supported the event over the past eight years. Read more stories from our incredible fundraisers turn to pages 35 and 36 www.mndassociation.org

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MPs show their suppo Scrap 6 Months cam

Pictured from left to right are actor Jim Carter, Colm Davis, who is living with MND, Lady Sylvia Hermon MP and actor, Nichola McAuliffe who attended the event in Parliament in November

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HANKS to the support of readers of Thumb Print and our campaigners, more than 125 MPs have backed the Association’s campaign, Scrap 6 Months, by signing a letter calling upon the Government to support a change in the law to improve the benefits system so it works for all those with MND. Scrap 6 Months was launched on Global MND Awareness Day, 21 June 2018, urging the Government to change the law to ensure people living with MND can access benefits, such as Personal Independence Payment (PIP) and Universal Credit, through the Special Rules for Terminal Illness (SRTI)

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fast-track process. At present, to access the fast-track, there needs to be ‘a reasonable expectation of death within six months, something that is incredibly difficult to predict in people living with MND. A Bill, which proposes removing the current six-month restriction on the definition of a terminal illness and replacing it with a clinical judgement, has been put forward by Madeleine Moon MP and had been due to have its second reading in November. This was delayed and is now expected to take place on 25 January 2019. The Association’s chief executive,

Sally Light said: “The delay to this Bill means that many people with MND, and other terminal illnesses, will continue to struggle through a claims process that is entirely inappropriate for their situation. It is absurd that people who are dying of a terminal illness are being told they are not dying fast enough, or are not terminally ill enough, to access a process which is designed for terminally ill people. Instead, they are forced to complete long forms, attend faceto- face assessments, meet with work coaches to discuss work aspirations, or are waiting weeks, and sometimes months, for their benefits to arrive.


port for mpaign “We have written to the new Secretary of State for Work and Pensions calling for urgent action so that all people living with a terminal illness can access the Special Rules fast-track process and can get the benefits they need quickly and sensitively.” In November, 52 MPs showed their support for the campaign by attending an event hosted by the MND Association and Marie Curie in Parliament. We would like to thank all those who completed the postcards which were sent out with the last edition of Thumb Print and sent emails of support.

“We have written to the new Secretary of State for Work and Pensions calling for urgent action so that all people living with a terminal illness can access the Special Rules fasttrack process.”

Sign our new petition Help the Association show there is strong public support for a change in the law and put pressure on the UK Government to take action now. Please sign our petition and encourage everyone you know to sign it too. You can sign online at bit.ly/ S6Mpetition or collect signatures using our paper petition sheet included in this edition of Thumb Print. By signing our petition, you will help strengthen our voice and make it harder for the Government to ignore our call.

Sam pictured with her friend Helen, Helen’s mum Vicky, who is living with MND and Sam’s daughter, Madeleine

Sam is a real star for Christmas!

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FUNDRAISER from Manchester found herself rubbing shoulders with soap star Gemma Atkinson when she was chosen to star in a Christmas advert for online retailer Very. Sam Ward, 34, was chosen to take part in Very’s Love Giving adverts in recognition of her fundraising efforts on behalf of the MND Association. Sam decided to get involved after being inspired by her friend’s mum Vicky Round, who was diagnosed with MND two years ago. She said: “My friend Helen and her mum Vicky were a big help to me when my Mum died when I was 18 – Vicky trained to be a nurse with Mum. Helen’s been there every single day since and I decided I wanted to do something to say, ‘Thank you.’ I’d been running to keep fit but I decided to step that up and pledged to run the Manchester half marathon to raise money.” Sam’s challenge raised £500 and inspired a friend to nominate her for a very special surprise. Sam said: “The first I knew was a call from a video company. They said they were doing some filming and would I come along and run in the background. I was pretty laid back about it all but they insisted on sending a taxi to pick me up and meeting me beforehand to brief me – it seemed a bit odd but I thought maybe there was some big celebrity appearing in the video.” In fact, it was all a ruse to get Sam in front of the camera – as the ‘star’. She said: “We were filming and it took a

while and I thought maybe I should call my husband David to ask him to pick our son Zack up from nursery then David walked in with the actress Gemma Atkinson!

Sam and her husband, David pictured with soap star, Gemma Atkinson

“I had no idea at all, it was such a surprise although David had known all about it. Apparently he’d warned Gemma I might not know who she was because I’m hopeless at recognising people but thankfully I did and she was really nice! “The whole thing was such a surprise. As Gemma and I chatted I realised we’d both lost parents at a young age. Then it started to sink in that this had all come about because of my fundraising for Vicky and I got quite emotional.” As well as presenting her with a personal training programme working with Gemma Atkinson’s own personal trainer Steve Chambers, Very also donated £5,000 to the MND Association on Sam’s behalf. You can find out more about Sam’s story by visiting her Just Giving page www.justgiving.com/fundraising/ samantha-ward84 www.mndassociation.org

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branchesandgroups

Members of the East Surrey branch take part in their annual Walk to D’Feet

Making every step count

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OX Hill in Surrey was the venue for the East Surrey Branch’s annual Walk to D’Feet which raised more than £500 for the MND Association. The sponsored walk took place on Sunday 2 September, with those taking part walking eight miles from Box Hill to Headley Heath and back. Branch chair, Simon Edmands said he was very grateful to everyone who joined in adding: “This is such a simple way for people to help raise awareness and money for the Association while getting a bit of fresh air and exercise!”

Imelda pictured at the start of the marathon

Play sparks debate on end of life care

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MOVING play which brings to life one family’s journey with MND has sparked a discussion about end of life care in Berkshire. Fighting for Life tells the story of Helen Findlay and her parents, Joan, who was living with dementia and Jim, who was later diagnosed with MND and the struggles they faced when it came to accessing appropriate care. A reading of the play, written by Brian Daniels, was recently held at West Berkshire Hospital and afterwards the audience took part in a debate. Branch chair Margaret Moss said: “It is not uncommon in our work to find a disconnect

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in services and we hope that this will go some way to improve and ensure a more joined-up health and social care service.” During the debate, one former carer described some of the care her husband had received as appalling while she praised the services at the MND Care and Research Centre in Oxford. Ms Findlay said the event had, ‘helped to spark the start of a light being shone on palliative care issues that need to be highlighted.’ Retired GP, Dr Paul Millard said he would use the issues raised at the meeting as a ‘launch pad’ for discussions at a seminar being held at the hospital in the Spring.

Imelda’s challenge of a lifetime

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SSOCIATION visitor Imelda McDonnell decided to celebrate her 50th birthday by running in her first marathon. Imelda, who cares for people living with MND in Lincolnshire, took part in the Hornsea Running Festival on 2 September and raised more than £2,600 for the MND Association. She said she had wanted to complete the challenge to support people living with MND across the region.


branchesandgroups

Branch’s first Walk to D’feet raises £2,500

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ORE than 100 people took part in the first Walk to D’Feet event to be held by the Worcestershire Branch of the MND Association. The walk, which was held on 1 September in Redditch, was inspired by a local family and Leza, a local person who is living with MND. It was also held in memory of Hillary, a branch committee member for many years. The event raised more than £2,500. You can find out more about the branch on Facebook or by following @WorcsMNDA on Twitter.

Organiser Stacey Kerr is pictured with branch member Greg Broadhurst

Actress Lily James is pictured with Sophie Mercer

Memories ‘n’ Dreams really do come true!

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OR this little girl Memories ‘n’ Dreams really do come true! Sophie Mercer got the chance to meet her real life Cinderella when actress Lily James joined members of the North London Branch for their Memories ‘n’ Dreams Walk in September. Lily, who is the branch patron, braved torrential rain to take part in the event at Trent Country Park in Cockfosters, alongside members and supporters. Branch publicity officer Tina Di Fruscia said: “Lily proved yet again she’s not just a Hollywood superstar but a real trooper. Despite the downpour we raised around £1,500 which was fantastic. “We would like to say a massive thank you to Lily for being such a joyful sport in giving up her time yet again. An amazing morning was had by all.”

Winter ball success warms the heart

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WINTER ball, held by the Manchester and District Branch in November raised more than £11,000 for the MND Association. A raffle and an auction were just a couple of the attractions on the night, which was held at the AJ Bell Stadium in Salford. Stacey Kerr who organised the ball said: “There were 300 people in attendance and the raffle and auction were followed by a fantastic party. Businesses also sponsored the event which we were very grateful for. The evening was hosted by John Collins who is a huge fundraiser for the Association having lost his father to MND. Huge thanks to everyone who attended and made the night such a success.” www.mndassociation.org

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thankyou

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

All the right moves: More than 130 Zumba fans came to join Lindsey Thomson-Heley and her fellow instructors when they organised a Zumbathon in Newcastle upon Tyne. Lindsey has held a number of similar events in the past but was inspired to support the MND Association because her friend’s daughter is living with MND. The gang danced their way to raising over £2,000.

A close shave: The Ruddock family came together to raise funds in memory of Michael Ruddock, who passed away in March after living with MND for two years. Several members of the family had their heads and beards shaved at their local football club, where lots of people came to watch. The family raised even more by holding a cake sale and raffle, bringing the total raised at the event to £1,896.

A family affair: Elizabeth and Matthew Southam took part in the Great North Run children’s races in September. Elizabeth completed the 4.5k Junior event in 30 minutes and Matthew took just eight minutes to finish the 1.5k mini event. Together they raised an amazing £315 in memory of their Grandpa Baker. The duo is keen to take part again next year and will be joined by their dad John who will be running in the adult race.

Hair today, gone tomorrow: Rachel Buckley had 12 inches cut off her hair to support the MND Association’s work and has raised a fantastic £840. Rachel said: “My Mum has MND and thanks to the support from the Association she can still communicate with us and we can still get out and about as a family and go on trips with the dogs.”

Sales boost: Lyn and her mum, Mary have been busy holding car boot sales to raise money in memory of their dad and husband, Edward Buchanan, who they lost to MND in 2016. They raised £190 to add to his tribute fund which currently stands at £2,177. Lyn said: “All our family and friends now give us items to sell that they would otherwise have given to charity shops. We also raise money through MND collection boxes and still give money for what would have been Dad’s birthday and at Christmas, this way we still feel he is with us all.”

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thankyou

Fundraisers fly high: Carole Gardiner and her friends Selena and Deb had a brilliant time when they completed a 225 metre long, 35 metre high zip wire across London. Together they raised £1,104 for the MND Association. They were inspired to take on the challenge after recently losing a dear friend to MND. Carole also lost her dad to the disease 24 years ago.

In memory of Adam: The friends and family of Adam Peacock have now raised £36,000 for MND research since Adam sadly lost his battle with MND in 2012, aged just 33. Every September Adam’s family and friends rally round to organise a football tournament in South Shields. His mum Jean Peacock is pictured here with Adam’s friend Gemma McKay at this year’s event.

Pushing the limits: Brothers Sam and Tom Webb took on a very wet Great Eastern Run and raised over £1,000 in memory of their grandad, Reg. They said: “What an experience our first half marathon was, so enjoyable yet so brutal as the weather was horrific. “But we dug deep and crossed the line successfully.”

The challenge of a lifetime: Mohit Jain took part in the Ealing Half Marathon to raise money for the West London and Middlesex Branch of the MND Association in memory of his father. He said: “Growing up one thing Papa taught me was to never give up and to always push yourself.  It’s five years since he finally succumbed to motor neurone disease and to mark his memory I ran a distance I never could have imagined.”

Mary’s birthday gift: When Mary Mawson celebrated her 100th birthday, she decided to mark the occasion by donating the £1,025 she received in lieu of gifts to the MND Association in memory of her friend Billy Garrett. Billy died from MND in 2016 and his family were deeply moved by Mary’s kindness.

From the north to the south: Justin Hostettler Davies’ latest adventure, North2South4MND, saw 40 people cycle the length of Wales over three days. Starting in Llandudno and finishing in Bridgend, the intrepid team also climbed the three highest peaks in Wales - Snowdon, Cadaire Idris and Pen y Fan. Thanks to his amazing fundraising efforts, Justin has now raised more than £100,000 for the MND Association.

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yourletters If you have something you would like to share with other members of our MND family, we would love to hear from you. Letters, which must include your full address, can be sent to Your letters, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email to editor@mndassociation.org Please note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

Ann, pictured with her husband Barrie Burgess and their son Max

‘Under the shade of the poetry tree’

Ann Franklin, who is living with MND, sent in this poem called Oh, for the shade of a tree, after a family holiday in Majorca during the summer This is bliss, sitting under this tree, It gives protection from the raging sun. I am fine here in the shade, Whilst my husband and son go parasailing.

Two ladies sit on the bench near me, Mother and daughter I guess. The daughter takes a photo of mum looking right, And another one of her looking left.

I feel a mixture of vulnerability, Being left alone in a wheelchair (with no voice) And extreme contentment, Being left alone in a wheelchair (with no voice).

They go to leave and mum gives me a look, It says: ‘Why did she need two photos of me?’ I smile at her and raise my eyebrow No words were needed between us.

The breeze gently wafts the branches to and fro, Dislodging some of the twigs on me. I don’t mind at all, It makes me feel part of nature.

I can see the parasailing going on, It’s a long way from shore. I wonder if it’s Barrie and Max, It must be wonderful to be up there.

There’s a window with shutters near me (a piece of art) Made of rocks from the sea and metal. It’s a perfect photo opportunity for passing tourists, But children told to smile don’t always want to!

People are queuing for the boat trip, We did that to Puerto Christo. It was on the Sea Adventurer swimming on the way, What an exhilarating experience!

A Spanish lady with a tired toddler, Stops to take shade and give him some water. How do they stop being dehydrated In this scorching heat?

My lovely boys are back, Telling me about their adventure. I have had my adventure too, Under the shade of my newly christened ‘Poetry Tree!’

A German family gather just behind me, Noisily chattering about what to do next. Please leave me alone, To my peace and quiet.

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Ann Franklin, Cala Bona, Majorca, 2018


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

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

Thumb Print travels to Cambodia!

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Y cousin Nicola Stuart has very recently completed the Vietnam Cambodia 480km cycle in ten days in aid of the MND Association. Here is a picture of her, in Angkor in Cambodia, with a recent issue of Thumb Print! David Browning, via email

Have you taken your copy of Thumb Print somewhere special? Send your pictures to clare. brennan@mndassociation.org For more inspiring stories from our amazing fundraisers turn to pages 36 and 37

Wedding guests raise a glass to charities

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t their wedding on 22 September 2018 my daughter, Rebecca and her new husband, Sam, pictured, generously provided a free bar for their guests. The couple requested that, instead of spending money at the bar, people donated to two charities close to their hearts. A total of £805.90 was donated and half of this, £402.95, has been given to the South and West Somerset Branch of the MND Association. This was Rebecca’s chosen charity as her father, Nigel, died of motor neurone disease in 2012. The Association provided valuable help and support to Nigel and his whole family. Carolyn Boley, via email

diarydates • West Regional Conference: Birmingham, 9 February, 2019 • Vitality Big Half, London: 10 March 2019 • Brighton Marathon: 14 April 2019 • London Marathon: 28 April 2019 • Nightrider 2019: London 8-9 June 2019 • MND Association Annual Conference and AGM: 13 July 2019 • Walk to d’feet MND: Walks throughout the year

Facebook www.facebook.com/ mndassociation Twitter @mndassoc

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

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

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

www.mndassociation.org

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