The magazine of the Motor Neurone Disease Association
Summer 2016
A month to remember Looking back on Awareness Month
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Shortened Stories Celebrating the success of Awareness Month 2016
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A ticket to ride! Clive and Lynn raise thousands for the MND Association on their South Coast Road Trip
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Searching for the answer The latest news from MND research
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‘The story of my life’ John Nodding talks about his new book, his faith and living with MND
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The trip of lifetime How the MND Association brought Bill King and his new grandson James together for the first time
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Celebrities come together to support Association Pictures from an evening reception with our Royal Patron and the OpenMiNDs Ball
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Thank you! How our amazing supporters have been raising money for the MND Association On the cover: Heather Smith pictured with the ‘Shortened Stories’ poster which tells the story of her partner Steve’s battle with MND
Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, PO Box 246, Northampton, NN1 2PR. Reg. charity number 294354. Editorial and advertising enquiries: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org
Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply that those products or services will be provided, funded or available via the Association.
welcome…
For the majority of us the true realities of living with MND are simply unimaginable. Stop for a moment and imagine not being able to say, ‘I love you,’ to those closest to you, or imagine not being able to walk your child to school. For most of us these are simple, every day actions which we take for granted. For many people living with MND they are memories of a life they once had, a life cut short by a terrible disease which has no cure. This year, our Awareness Month campaign Shortened Stories has focused on the devastating reality of MND, using the stories of those whose lives have been affected by the disease to encourage more people to join us and support our work. And we are incredibly grateful to the three extraordinary people who bravely shared their inspiring stories for our campaign, touching the hearts of many thousands of people. Steve was diagnosed with MND in August 2009 and died just two years and seven months later, in March 2012. Steve’s partner, Heather, shared some of his story to help create a graphic poster which highlighted the reality of MND and the impact on his life. The poster, which appears on the front cover of this edition of Thumb Print, featured on 2,700 sites across England, Wales and Northern Ireland and has been seen by millions of people. Robert, who is married to Sariet and has a baby daughter called Maya, was just 33 when he was diagnosed with MND. He shared his experiences of life with MND through a moving poem Fresh Breath which you can hear him reading, with help from his communication aid, on our website. And Jo Cole, who was diagnosed with MND when she was just 27, shared her story through an Eyegaze painting created by the wonderful artist Sarah Ezekiel who is also living with MND. Their powerful stories, together with tremendous support from our staff, volunteers, fundraisers and campaigners, have helped to turn this year’s Awareness Month into one of the most successful ever. Our members’ response has been overwhelming and I want to thank you all for your commitment and hard work on behalf of the Association and all those affected by MND. It’s now down to all of us to continue our fight for a world free from MND and help write the next chapter for all those affected by this terrible disease.
Sally Light Chief Executive
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Stories of courage, love A look back at the MND Association’s Awareness Month and the stories behind the headlines
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UR Awareness Month campaign in June – Shortened Stories – was based around real people whose lives have been, or sadly will be, cut short by motor neurone disease. Through a dedicated website www. shortenedstories.org the impact of MND on real lives was shared by people in different ways; a multi-framed poster, a video of a poem and a portrait painted by an artist living with MND using just her eyes, which was inspired by the story of a young mum who is also living with MND.
“It takes real courage to share your story with the general public and my heartfelt thanks go to Heather, Robert, Jo and Sarah for their support.” Sally Light, Chief Executive of the MND Association said: “It’s been another quite incredible Awareness Month. Every year it is hard to imagine how we will top the last but thanks to such powerful and inspirational stories shared by people affected by MND we have made a huge impact this June. “From the amazing Shortened Stories posters across England, Wales and Northern Ireland, to the extensive media coverage around our launch – to all those who have supported us on social media; it really has made a huge impact. “It takes real courage to share your story with the general public and my heartfelt thanks go to Heather, Robert, Jo and Sarah for their support. We know they will have made a difference.” Our Shortened Stories poster was based on Steve’s story, as told by his partner Heather. Steve was diagnosed with MND in August 2009 and died just two years and seven months later in March 2012, aged only 51. Heather shared details from Steve’s childhood, work and even hobbies to create real life painted frames that together make up their shortened story. She said: “Getting involved with the Shortened Stories poster campaign was something completely different and I know Steve would have laughed at my
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worrying over detail like which Pink Floyd album poster was on his wall in the university frame. But I think it has stayed very true to Steve and his story and hopefully will connect and raise awareness of MND to a whole new audience.” Across England, Wales and Northern Ireland the posters appeared on 1,730 buses and 671 sites across the National Rail network. In London, there were 368 posters on the Tube.
as well as fundraising for the MND Association. Her story was brought to life for the campaign by artist Sarah Ezekiel - who was diagnosed with MND in 2000 using eye-tracking technology. Throughout June people watched as the painting slowly and painstakingly evolved on the internet.
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year after he was diagnosed, Robert wrote a poem called Fresh Breath about his life with MND. The MND Association approached him and asked him if he would like to part of our campaign. We filmed Robert at home with his family, wife Sariet and baby daughter Maya. Robert said: “The filming was quite emotional so it’s good to hear it has had such a powerful effect on other people too and thank you for the opportunity to do something so positive and be part of the campaign.”
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o was diagnosed with MND in July last year and, after initially struggling to come to terms with the news, she started raising awareness through a regular column in her local newspaper
Sarah’s painting in progress of Jo and Harry was viewed by thousands online
Jo said: “I’m positive because what’s the point of sitting around feeling sorry for myself. I want to make a positive out of such a negative situation. So far with the help of family and friends, I’ve raised more than £9,000 for the MND Association. They have been amazing and deserve every penny. Being part of Shortened Stories and together with my son Harry being turned into such an amazing picture by Sarah has been brilliant and the support from social media has been incredible.”
and determination Something for everyone this Awareness Month
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hether you read the Mirror, watch BBC Breakfast, or are a regular listener to Radio 4’s Today Programme, there was no avoiding Shortened Stories. Bob Keats and his family from the Isle of Wight were filmed for BBC Breakfast. The feature focussed on problems around diagnosis as highlighted in our recent Improving MND Care survey and also included an interview with the Royal College of General Practitioners (RCGP), talking about our collaborative work. Bob’s daughter Sophie was also interviewed on the Today Programme on June 1, together with our Director of Research Development Brian Dickie. Meanwhile a pre-recorded interview
with our Chief Executive Sally Light was playing out from the earliest news bulletins on BBC Radio 2 and Radio Five Live while she was interviewed live soon after 7am on BBC Radio London. Five Live listeners then heard the powerful words of Vivienne Edwards whose husband Tony had died just weeks earlier. A few days later and Eddie, who is living with MND in Wales was interviewed by Clare Balding on her Good Morning Sunday Radio 2 show. He described how his faith helped him stay positive. Thanks to so many people affected with MND who gave up their time and shared their stories; making the most of national and regional media opportunities.
Bob Keats, pictured with his daughters Sophie and Holly and wife Helen
Spreading the word on social media
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t’s been an amazing June for the MND Association and our Shortened Stories campaign on social media. We’ve had hundreds of thousands of people see our posts, raising vital awareness of motor neurone disease. Our main social media channels, Facebook and Twitter, have seen incredible engagement from our supporters and even those who weren’t familiar with the Association.We also worked alongside two of our Patrons – Eddie Redmayne OBE and Benedict Cumberbatch CBE. They both sent us short video messages introducing Robert’s poem, Fresh Breath. We released both clips via our social media channel, Facebook, Twitter and YouTube. The videos were viewed a total of 36,200 times, the posts reached 103,000 people meaning a viewing percentage of over 35%, which is well above average. Both posts were shared 1200 times and had more than 800 likes.
Beth’s Blog tells her father’s story
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hroughout June we hosted a special blog by Beth on our website. She started writing about her dad Ron, and his journey with MND and the impact on both herself and the rest of the family back in July 2014. We shared 29 out of more than 100 blog posts each day in June – with one extra updated message from her on the last day of the month.
Beth’s Blog shared the reality of someone also impacted by frontotemporal dementia (FTD) as well as the physical impact of MND. Beth said: “Some of it is a tough read but I hope it will have helped just one other person realise the extra problems having FTD with MND can bring. It was an honour just to be asked to get involved in this campaign.”
Beth pictured on her wedding day with her father, Ron
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Wish you were here!
Clive and Lynn have a holiday to remember
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HEN Clive and Lynn Hudson first decided to book a holiday visiting seaside towns along the south coast of England, they had no idea it would turn into a major fundraising event. But soon after becoming involved with the East Kent branch of the MND Association, the couple decided to turn their idea for a holiday into the South Coast Road Trip – travelling from their home in Broadstairs, Kent to Land’s End in Cornwall using only public transport. At each stop along the way each local branch welcomed Clive and Lynn to their town by hosting an event to raise awareness and encouraging people to donate money. Donations were also received through the couple’s Justgiving page. The road trip, which covered almost 400 miles and took 15 days, proved to be a huge success, raising around £10,000 as well as awareness of MND and the work of the Association. Clive said: “The way we were received in the various towns was extraordinary. We have lots of wonderful memories.
Take a minute to tell us your thoughts
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HE MND Association is busy planning its work for the next five years and we need your ideas to help us make sure we continue to meet the needs of everyone affected by MND. Within this edition of Thumb Print you will find a short survey containing three key questions which will help us learn more about your personal experiences of the Association and the areas that you feel we should prioritise. It will only take a minute to complete and your ideas will give us the complete picture about the views of our members.
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“There have been many highlights, but visiting The Battle of Britain Memorial, where we were shown around like VIPs was incredible as was the zipwire challenge on Bournemouth Pier t off Clive and Lynn se irs sta ad Bro where there were so m fro many people wearing MND Association T-shirts. “We were also thrilled to see young people helping to raise funds by cheerleading in Southampton and singing and dancing in Weymouth. “In Exeter we visited the Bishop where he gave us the use of one of the rooms in his palace. The greatest emotion we have is one of elation – it has been quite a journey.” If you would like to donate please visit www.justgiving.com/fundraising/ MNDA-East-Kent1
Clive and Lynn in
Hove
Get set for Christmas!
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OOK out for the MND Association’s Christmas brochure which is packed full for festive goodies for your and your family. We have everything to help make your Christmas extra special from wrapping paper and cards to the perfect stocking fillers for family and friends. And best of all, you can order your festive treats safe in the knowledge that every penny of profit, together with any additional donations, will go towards improving the lives of all those affected by MND. A gift of £10 can help provide a comprehensive information pack for a newly-diagnosed person, while £25 will run the MND Connect support and information line for an hour. To find out more visit shop.mndassociation.org
A helping hand to pay for a precious day out
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YOUNG boy and his sister who recently lost their grandmother to MND enjoyed a family trip to a falconry centre thanks to a grant from the MND Association. Seven-year-old Owain Floyd and his sister Saranna who is four, visited the Feathers and Fur Falconry Centre in Reading with their mum, Kerenza after receiving a Young Persons’ Grant from the MND Association. Kerenza explained that Owain had received the grant a month before his grandmother Delwyn Pusey died on 2 April.
“Thank you so much for awarding the grant. It was so comforting to see the children having an enjoyable day, taking their minds off recent events.” She said: “My children both helped look after Mum without having to be asked; wiping up her dribble, passing her things, patting her on the back when she choked or distracting her with crazy games on the iPad. They would visit Mum every day after pre-school and school, and bought so much joy and love into her life, even on the darkest of days.” Kerenza said that the family’s Association Visitor (AV) Janet Dell had applied for the grant on their behalf and that they were extremely grateful. She said: “The children both thoroughly
Isla Grundy
Owain and his sister Saranna get to grips with one of the falcons
enjoyed getting up close to the birds, helping to feed them and feel their weight as they held them. “We also used the grant for lunch and to buy a memento for each of them. “Thank you so much for awarding the grant. It was so comforting to see the children having an enjoyable day, taking their minds off recent events.” If you know someone aged 18 or under who is affected by MND and may benefit from a grant of up to £250 then visit www.mndassociation.org/getting-support and complete the application form.
The NICE guideline on MND and you
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N information sheet which explains everything you need to know about the National Institute for Care Excellence (NICE) Guideline on MND has been published. The guideline was published in February and promotes best practice among healthcare professionals as well as recommendations about treatment, care and support. While it is not a legal requirement, it is expected to be taken into account by health and social care professionals when caring for people living with MND.
The information sheet, which has been published by the MND Association, outlines what the guideline means and how it can be used by people living with MND to ensure they have access to the best care possible. Information sheet 1A – NICE guideline on MND is available to download from www. mndassociation.org/publications or you can order a printed copy from MND Connect on 0808 802 6262 For the full guideline, visit the NICE website at: www.nice.org.uk/ guidance/ng42
Isla reaches the end of 500-mile challenge
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little girl from Leeds has walked over 500 miles and raised more than £3,500 for the MND Association in memory of her grandad. Four-year-old Isla Grundy started the challenge, on Father’s Day last year and completed it at a family fun run held in Pudsey on Father’s Day this year, June 19. Isla’s grandad David sadly lost his battle with MND last year and the family came up with the idea of walking 500 miles to raise money in his memory. Isla’s mum Kirsty said that Isla had walked short distances throughout the year and taken part in a number of special events including an event themed around children’s character The Gruffalo and a fun run. She added: “Although we finished the challenge in June, Isla’s nursery are also going to hold a sponsored walk. She’s still very young to understand what she has achieved but we are delighted to have raised so much, particularly as our target was originally £500.” It has been a busy year for the family who welcomed new daughter Anna in March. Kirsty said: “Anna is doing very well and came along to some of the walks with us in her buggy.” www.mndassociation.org
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Members of the MND family pictured together at last year’s AGM
Make a date to attend the Association’s AGM
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HE biggest date in the Association’s conference calendar is now just weeks away and members are being invited to attend. The Association’s AGM and Annual Conference will once again be held at the East Midlands Radisson Blu on Saturday 10 September, bringing together members, staff, volunteers and fundraisers from across England, Wales and Northern Ireland. During the day, delegates will be able to hear the latest news from the Association and take part in a number of workshops. You can register for the next regional
from our chair In the last edition of Thumb Print I explained the work of the Board of Trustees and how you could have a unique chance to help shape the future of the Association by standing in our trustee elections. We currently have five elected trustee vacancies on the Board and I am delighted to be able to say that a significant number of strong candidates have been nominated. As we are now within the official
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conference which is taking place at the Thorpe Park Hotel, Leeds on 29 October. Our regional conferences are a great way to find out more about the work of the Association in your area and many of our members find them useful. Josie Meek, who is living with MND, attended our regional conference in Bristol in January. She said: “The regional conferences are a great way to keep up to date with the Association’s work. “We attend support groups so meet other people with MND, but the conference allows us to get a broader perspective on what’s happening. We would encourage others
voting period, I would encourage you all to take the time to use your vote and full details of how you can get involved can be found within this edition of Thumb Print. You can vote by post, or if you prefer to vote online, you can visit www. votebyinternet.com/mnd2016. The newly-elected trustees will also attend the Association’s AGM on 10 September, which will be held at the Radisson Blu East Midlands Airport. It promises to be another enjoyable and informative day and we have the great pleasure of welcoming Professor
to attend – it’s better in person.” Linda White from mid-Glamorgan is also living with MND. She attended her first conference in Bristol. She said: “It’s a good opportunity to learn more about the work of the Association as well what’s happening in our region.” If you are not able to attend in person don’t worry – you can follow any of conferences through our online livestreaming service. For more information about our conferences, or to register for a forthcoming event, visit www. mndassociation.org/regionalconferences
Dame Pamela Shaw from the Sheffield Institute for Translational Neuroscience (SiTRAN) who will be our keynote speaker. The Association’s staff will be on hand during the day if you have any questions and external exhibitors will also be attending. There will be opportunities to sample some complementary therapies and take part in some workshops. Full details of how you can register for the AGM can be found in the article above and I very much look forward to meeting you all on the day.
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research
Are we closer to knowing what causes MND? When someone is diagnosed with MND, most people ask why. In this feature, we look in greater detail at several research projects looking to find the answer to that all-important question.
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N the spring issue of Thumb Print, we looked at some genetic factors that influence MND. Although genetic research is giving us an important insight, the causes of MND are likely to involve a complex combination of genetic predisposition and environmental or lifestyle factors. Mathematical models using data from several MND registers have shown that up to six steps or causal factors are involved in MND developing. Environmental factors studied to date include diet, occupation, military service, chemicals and metals. In this article we focus on three factors: physical activity, pesticides, and BMAA – a toxic compound found in blue-green algae and how other factors may be identified in the future. Dr Brian Dickie, the MND Association’s Director of Research Development said: “The significant progress in genetic research in recent years has not been matched by improved understanding of environmental influences. Identification of the latter has been a slow process, but there is increasing evidence that they are indeed there to discover.”
Physical activity A study by former MND Association Clinical Fellow, Dr Ceryl Harwood looked at whether people with MND were more active in the past compared to healthy ‘controls’. Her approach, using a new questionnaire, was a better way of measuring lifetime physical activity levels than in previous studies in this area.
“Studies into environmental and lifestyle factors have not yet delivered consistent and clear answers. As with the genetic research, it is likely that these answers will only emerge from large-scale international collaborations.” Some people with MND had high levels of past physical activity, compared to controls, but others did not. This reinforces the role of genes and the environment as extra contributory factors in the development of MND. Professor Dame Pamela Shaw from the Sheffield Institute for Translational Neuroscience said: “Clearly most people who are athletic or physically active do not develop MND. The next step in this area
Exposure to pesticides may increase the risk of MND
of research will be to try and determine the genetic variations which make some people more susceptible to MND when the lifestyle factor of vigorous physical activity is also present.”
Exposure to pesticides A recent questionnaire-based study in the USA found that exposure at work to environmental toxins, such as pesticides, increases the risk of MND fivefold. Testing blood samples from people with MND also identified five specific compounds found in pesticides that increased risk of MND. However, these are found in old types of pesticide, several of which are now banned. This area needs further investigation to answer questions such as what level of exposure gives this increased risk, and if newer types of pesticide remain a risk factor for MND.
BMAA and blue-green algae For the last 30 years, evidence has been building for the role of BMAA (beta methylamino-L-alanine) in causing neurodegenerative diseases, including MND. BMAA, produced by certain types of blue-green algae, has been shown to have toxic effects. Researchers have discovered that when proteins are formed in the body, BMAA substitutes itself for an amino acid, or ‘protein building block’, called serine. This causes the protein to change shape and form clumps in nerve cells. Several studies in other parts of the world have suggested that the number of cases of MND is higher in areas near coastlines and lakes, where algal-blooms happen and BMAA has been measured in the water. Further research will be needed to establish if exposure to BMAA causes healthy individuals to develop neurodegenerative diseases.
Next steps Dr Dickie believes that the key to discovering the causes of MND lies in more research, collaboration with international partners such as the STRENGTH Project looking at risk factors for MND and in the longer term, the Association’s work in creating a national MND register for England, Wales and Northern Ireland. He said: “Studies into environmental and lifestyle factors have not yet delivered consistent and clear answers. As with the genetic research, it is likely that these answers will only emerge from large-scale international collaborations. “Replication of studies in different populations will help in establishing how much of a role these factors play in MND. Our ongoing work to create a national MND register will allow researchers the opportunity to explore this area in more detail in the future.”
Prof Dame Pamela Shaw
Dr Brian Dickie
More information: Read more about the causes of MND: on our research blog www.mndresearch. wordpress.com/category/causes/ On our website www.mndassociation.org/causes In Research Information Sheet A: Overview of MND www.mndassociation.org/researchsheets
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Improving access to communication aids
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HEN someone is diagnosed with MND, losing their voice can be one of the most distressing symptoms of the disease. Despite NHS England and NHS Wales now having responsibility for setting up specialist Augmentative and Alternative Communication (AAC) centres, many speech and language therapists find they don’t have access to appropriate communication aids either to carry out assessments, or to loan out to people living with MND to trial in their home. Thanks to the generous support of the Wolfson Foundation, the MND Association has been able to provide grants to local or community speech and language therapy teams to ensure they have access to equipment such as tablets, switches and specialist text to speech apps, so they can start supporting people living with MND much earlier.
“ These pieces of equipment are absolutely essential. This app and iPad are my means of communication and I am thankful we live in an age where this is possible.” A grant allowed Jennifer Benson, a speech and language therapist from Northern Lincolnshire and Goole NHS Rehabilitation Medicine Centre to buy two iPads, two iPad Minis, the Predictable and Proloquo2go apps for the iPads and an assortment of switches. She said: “From a therapist’s perspective, this kit has made a world of difference to me in terms of actually having equipment available to demonstrate to people, and to plug gaps while we’re waiting for equipment. “At present our local Clinical Commissioning Group (CCG) has not yet finalised funding streams for nonspecialist equipment so there can be long delays in accessing the funding needed to purchase non-specialist equipment. “I have had some difficult situations with bulbar onset MND patients with severe speech problems who really need their iPads and I have been completely stuck, so the fact that will never happen again to me as a therapist, is a huge relief.” Lynn Poucher, who is living with MND,
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explained how her communication equipment was vital. She said: “Jennifer was one of the first professionals I met and she was so kind and positive. I’m pretty sure I cried every time we met but she was always there and we tend to laugh now. “It was great to be able to have the iPad mini trial, thanks to the kit provided by the Wolfson Foundation, to see how much better it was before I bought one. The iPad Mini makes it a lot easier to type; it really is my life line to communicating to the world. You can cut and paste emails or text messages, you can talk on the phone and you can prepare messages. “I’m lucky I have a wonderful family and friends who have given me so much support. These pieces of equipment are absolutely essential. This app and iPad are now my means of communication and I am thankful we live in an age where this is possible.” The MND Association hopes to be able to offer further grants in 2017.
If you or a family member are experiencing difficulties in accessing equipment, please contact our Communication Aids Co-ordinator, Matthew Hollis on communicationaids@mndassociation. org or call our MND Connect helpline on 0808 802 6262. Further information is also available from our information sheet 7C Speech and Information Support, which can be downloaded from our website www.mndassociation.org or ordered by calling MND Connect on 0808 802 6262. Information for healthcare professionals is available via www.mndassociation.org/aacpathway www.mndassociation.org/aac www.mndassociation.org/ voicebanking
your stories
John tells the story of his life A chance conversation between friends led to a book being written about the life of a man living with MND.
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OHN Nodding was diagnosed with MND in August 2014 and one day, during a conversation with this friend, Jack McGinnigle, he mentioned that someone had suggested he should tell his life story. Jack, a professional author, agreed and suggested he could write the book. The result, A Small Piece of Pure Gold, tells the story of John’s eventful life, his faith, commitment to his church and his journey with MND. John has sold more than 300 personally-signed copies and many more have been sold through booksellers. John explained: “I was attending the gym twice a week after a heart attack in 2006. After a while, I found that I couldn’t pick up the same weights I was used to and had to switch to lighter ones. I also lost three stones in weight and I was told I
should visit my doctor. After a few tests he diagnosed motor neurone disease. “When I was first diagnosed, I was a little shocked but I could do most things. As time went on I had a few falls and slowly lost my muscles in my lungs, my legs and my arms.” The book tells the story of John’s career as a Chartered Accountant and his work as treasurer of his local Methodist Church as well as the tragic losses of his son Mark, his beloved wife Maureen and his twin brother Gerald. It also describes in colourful detail his love of travelling and the wonderful places he has visited including New Zealand, Australia and the Holy Land. John said: “It was wonderful to have my book published. Jack is a very good writer. He also said that his publisher was unlikely to publish the book commercially, but when he read it there was no hesitation. “It feels good that it has now sold so many copies.” The book is available through all high street book stores and online.
John, top pictured with his family, sons Mark and Paul, daughter Helen and his wife Maureen
A extract from John’s book...
Jack McGinnigle
“Mr Nodding, I think you’ve got motor neurone disease.” These were the devastating words that my doctor uttered as we sat in his consulting room. This was just an ordinary doctor-patient consultation like so many before it – but now it had been completely transformed by the introduction of an absolute nightmare. I said nothing but my reply to myself was abundantly clear the words resonating within my head: ‘No! He’s got that all wrong.” In fairness to my doctor, his words were a necessary response to a direct question of mine. Before this crucial exchange, I had heard the results of all the tests I had undergone in the weeks before. These were tests arranged as a result of a previous visit to the medical practice. The Computed Tomography (CT) scan had revealed nothing untoward, I had just been told. The same was true of the other x-ray images that had been taken. And, finally, none of the battery of tests that had been carried out on my blood samples had revealed any abnormal values. “All is fine here,” had been had been my doctor’s welcome message. Sweet music to my ears! However, it was in response to all this positive information that I had asked the fateful question: ‘So why is my voice changing?’
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volunteering
Extraordinary people doing extraordinary things For some people living with MND, volunteering for the MND Association allows them to meet new people and use their experiences to help others. In this feature, we meet three people who are determined not to let MND stop them from making a difference.
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OR Hal Bailey, volunteering for the MND Association gives him the opportunity to raise awareness of motor neurone disease and give something back at the same time. Hal, who is the webmaster and newsletter editor for the Cheshire Branch, was diagnosed with MND in 2004, after two-and-a-half years of tests. He said: “I had already retired when I was diagnosed and, in a way, I took comfort in this as I had not been forced to retire. I have been determined not to worry about my condition or let it take over my life.
“The support I have received since my diagnosis from the MND Association both nationally and locally has been good and putting a little something back is the least I can do.” “I have taken to heart the motto, Make every day count as life is not a rehearsal, we only get one chance to live it.” Three years after his diagnosis, Hal accepted an invitation to a support group meeting where an Association visitor talked to him about getting involved with the committee. He eventually took on the roles of newsletter editor and webmaster, while his wife Margaret is now the vice chair. He said: “I am still on the committee and will remain there for as long as I am needed. “I volunteered to take on this role in order to help raise awareness of the disease and to put something back into the system. The support I have received since my diagnosis from the MND
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Hal Bailey
Association both nationally and locally has been good and putting a little something back is the least I can do. “I am keen to encourage others living with MND to volunteer as we are the only people who can really tell it as it is.”
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ioned Jones, 43 was diagnosed with MND in 2007. She is a busy mum of three, a grandmother of one, and also finds time to volunteer for the Association’s Gwynedd and Ynys Mon Support Group.
She said: “I am the social media co-ordinator and post items of interest on Twitter and Facebook and also help with tombolas, bucket collections and raising awareness. “My MND progression is slow, so I am able to help raise awareness which helps us get closer to a cure. “I think it keeps me going. It gets me out of the house, I can meet people and I feel that I am doing something positive to help. “Because our area is so rural it helps others feel as though they are not alone.”
Help us to shape our new diversity strategy
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hroughout the summer, the MND Association is seeking views about what should be included in our new Equality Diversity and Inclusion Strategy. The document is due to be published later this year and members, volunteers and staff are being invited to have their say. Chris Wade, the MND Association’s Director of Engagement said: “Such a strategy has to be meaningful to all of us.
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HRIS Hull was diagnosed with MND in 2007 and volunteers for the Northamptonshire Branch. She explained: “I worked in the voluntary sector for about 25 years, mainly with young offenders and with people who had problems with drugs or alcohol. “I retired on a Friday in May 2007 and the following Monday my diagnosis of MND was confirmed.
“Through volunteering, we have met lots of people from the MND Association and the drop-in and avoided the isolation which such a devastating illness can bring.” “It had taken over two years of knowing something was wrong, but I had not been feeling unwell, although I was aware my slurred speech was increasingly noticeable. Eventually after another couple of years I was told I probably had the Primary Lateral Sclerosis (PLS) form of MND.” At first, Chris said she was reluctant to get involved with the MND Association,
Chris Hull
Sioned Jones
but was encouraged to do so by her occupational therapist (OT). She said: “I didn’t want MND to define who I was, however, my OT encouraged me to go to the Sunday afternoon branch meetings. “I was disappointed that very few others with MND attended these meetings and thought if I joined the committee I could be involved in looking at ways to attract more people with MND and their carers. I joined the committee where I took on the role of branch newsletter editor.” Chris explained that she also did some research on alternative ways of holding local meetings and after several discussions, the group decided to try a midweek lunch time drop-in session at a local garden centre, which proved to be a huge success. She said: “My philosophy is, ‘if one door closes you have to be prepared to push open other doors.’ “Through volunteering, we have met lots of people from the MND Association and the drop-in and avoided the isolation which such a devastating illness can bring.” To find out more about our Association volunteering roles please call 0345 6044 150 or email volunteering@mndassociation.org
Chris Wade
“There’s no point in having a strategy developed by MND Association managers, owned by managers, but which fails to recognise and address the needs of volunteers and staff throughout the MND Association. “It has to be your strategy, my strategy, our strategy. We will need to own it, act on it and together make the MND Association the true community of all those affected by MND that we want it to be. “Do look out for information about a survey, forums and focus groups on social media, in the news and on our website over the next few months. Please do get involved and let us have your contribution.” If you would like more information about the strategy contact Chris Wade direct at chris.wade@mndassociation.org
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fundraising branches and groups Music to their ears An evening of classical music from composers Tchaikovsky and Vaughan Williams helped to raise £284 for the Association. The Southport Orchestra, pictured, performed at the event which was held at St John’s Church and organised by the Merseyside Branch of the Association.
Painting raises pounds More than £2,000 was raised at a coffee morning and grand draw organised by the Montgomeryshire Branch. The grand draw’s first prize was a print by artist Brian Jones, who is pictured with members of the branch, president Glyn Davies MP and vice president Howard Evans.
A day for paella and making plans Paella and a performance by members of the Surrey Show Choir were on the menu at the January meeting of the Association’s East Surrey Branch. A raffle and other fundraising activities raised £500 for the Association and members discussed the branch’s plans for the year ahead. Our picture shows Pip Fitzpatrick and John Robbins and who supplied the paella.
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The driving force behind fundraising Staff from the Getrag Ford Plant in Speke have donated £2,600 to the Merseyside Branch of the Association. Each year staff donate money from their salaries to charity. Pictured at a reception organised by the company are members of the Merseyside Branch together with staff from the plant.
Send us your branch or group stories editor@mndassociation.org
care
Taking you where you want to go In the spring edition of Thumb Print, we explained how people living with MND can still enjoy getting out and about with a bit of careful planning. In this feature, you can find out more about the information which is available from the MND Association to help you with your travel plans.
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OW summer has arrived, you may be thinking about day trips, visiting friends and family, or just spending more time outside. The MND Association produces information sheets about getting around but here are some key things to remember to make sure you have a successful journey. • Always plan your travel. Where applicable, discuss your needs with the transport provider. • Decide in advance where and when you will stop for breaks. Motorway service stations have disabled parking and accessible toilets, but smaller service stations may not. You can also apply for a Blue Badge to access disabled parking concessions. If needed, wheelchair accessible vehicles are available and you may qualify for some help with this through the Motability scheme. • Vehicles used by taxi companies vary greatly. They may advertise as being accessible, but finding a taxi to carry a
large electric wheelchair can be difficult. Know the width and weight of your wheelchair, as well as the height with you in it. • Most UK buses are accessible and can be lowered to help you get on or have ramps. There is usually space for one wheelchair. • Many UK train stations and trains are accessible. Most are suitable for wheelchairs and mobility scooters, but facilities can vary so check in advance. Most trains have wheelchair spaces positioned near the disabled toilet. Although some tube stations are stepfree, tube travel can be challenging, so get advice. • Most EU airports are wheelchair accessible. Airlines will carry most wheelchairs, although a weight and size limit may sometimes apply. Different airlines have different rules, so ask when booking. Most airports offer free assistance for people with disabilities.
• You can often drive through a ferry terminal and onto the ferry without leaving your car. Most ferries have lifts and disabled toilets. Once on board, it can be difficult to balance if you are unsteady on your feet. Some companies suggest travelling with someone who can assist you.
See our related information sheets: 12A – Driving 12B – Choosing the right vehicle 12C – Travel and transport 12D – Planning a holiday 8E – Air travel and ventilation for MND You can download these from www. mndassociation.org/publications or order printed copies from MND Connect on 0808 802 6262
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feature
Bringing a family together for the first time When Bill King’s grandson James was born in China in October last year, both Bill, who is living with MND and his wife Sharon, were keen to travel there as quickly as possible to meet the new arrival. In this feature, Bill explains how they were able to take the trip of a lifetime, with a little help from their local branch of the MND Association. Bill, pictured with his wife Sharon, son Liam, Liam’s wife Tu Mao and baby James, in a family snap
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RANDCHLDREN are one thing I never thought I’d live to see,” explains Bill, who has been living with MND since 2007. “My son Liam went out to work in China about three years ago and he settled really well there and got married in 2015. “We didn’t see the wedding. It’s one of those things you hope you will see, but unfortunately we couldn’t. I want him to follow his dreams, I don’t want him to sit around in Britain because I’ve got MND. I want him to go and do what he wants to do in life, as this is his time.”
“The support from the MND Association was unbelievable and helped to make it happen along with fantastic support from friends and family.” Liam and his wife Tu Mao welcomed their son James into the world on 29 October, eight weeks prematurely, weighing just 4lbs. Bill said: “It was a real worry as we didn’t know whether he would be okay. He spent
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two weeks in intensive care and they really looked after him.” Bill and Sharon were desperate to visit Chengdu to meet little James, but knew it would be expensive. He said: “I am a member of the Clywd Branch and over the years they have been very good. “The money given to us in the form of a grant went a long way to helping us make it a memorable trip so we couldn’t be more thankful.” Bill and Sharon started planning for the trip in November when Bill spoke to his consultant at The Walton Centre in Liverpool. He was checked out by everyone who cares for him to make sure he was in optimum health and to ensure he had the necessary medication to last while he was away. Bill said: “I did have a lot of concerns before I went about my health and how I would manage – the food, not having western toilets around and loads of concerns most travellers would have. “I also had the added concern of my MND and how I’d cope with the pain,
cramps and problems swallowing.” But after a long 18 hour flight Bill said that meeting James for the first time was one of the proudest moments of his life. He said: “He was a little bundle of joy, he’s a very happy boy and, although he was very small, he was just perfect.” During their 28-day visit, the family visited the Giant Panda Breeding Research Base. They spent time getting to know their daughter-in-law Tu Mao and her family. Bill said: “It was an absolute dream trip because we never thought we’d be able to get out to see them, firstly because of my health and secondly because of the financial implications. “The support from the MND Association was unbelievable and helped to make it happen along with fantastic support from friends and family. We can’t thank the Association enough.” For more information about quality of life grants, please contact your local branch or MND Connect on 0808 802 6262.
Off on your travels? Send us a postcard!
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F you’re heading away on holiday this summer Thumb Print would love to hear from you. In the last edition, we invited our readers to take a picture of themselves with a copy of Thumb Print while they are away on holiday. Philip Brindle, who is living with MND, sent in these pictures during a recent cruise to the Norwegian fjords. He said: “One of the pictures was taken at the Myrdal station at the top of the Flamsbana railway, one of the steepest trainlines in the world on normal tracks. It is a wonderful trip from Flam village which is situated toward the end of the Sognefjord, which is about 100 miles long and the deepest of the Norwegian fjords. “The other photo shows P&O Britannia in the small destination of Olden, a pleasant little village located at the inner
end of the Nordfjord. “You may be able to notice that I am wearing the Sheffield Support Snood. Is this the first time the Snood has been on holiday to Norway? “I have neck, arm and hand weakness due to MND and have been pleased to have the snood as I find it much more comfortable, supportive and adaptable than any other neck support. Hopefully we will be able to take it on many more holidays.”
If you’re going away this summer, don’t forget to pack your copy of Thumb Print. Take a snap and send it to Clare Brennan, Editor, MND Association, PO Box 246, Northampton NN1 2PR or email editor@mndassociation.org, and you could appear in the next edition.
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fundraising
Giving the gift of ho Thanks to the extraordinary efforts of our runners, an incredible £367,848 was raised for the MND Association at marathons held in London and Brighton in April. Here, we meet some of the runners who took part and tell their stories of love and hope.
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ROUDLY wearing their blue and orange vests and fancy dress in the Spring sunshine, 160 runners took their places at the start of the London Marathon in April. For many, it was an extremely emotional and poignant day as they made their way along the 26 mile route. One of those people was William Lindesay whose wife Amanda, who is a triplet, is living with MND. Amanda’s sister Vanessa is also living with MND and sadly they lost their other sister Emma and mother Joan to the disease. William explained: “I am going to write on my hand the names of the four family members. “When I glance at it, it will give me a constant reminder of why I am doing this. If this does not get me across the finish line, nothing will.” Nicola Moger, whose partner lost his mother to MND last year, said: “I run because I can. “When I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted. I run harder for them. I know they would do the same for me.” Joanne Roots lost her father to MND and
William Lindesay pictured at the end of the marathon with his sons Ben and Dan
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hugs, applause and some well-deserved refreshments, together with as many massages as possible. Volunteers from our South London Branch also created a morale-boosting party atmosphere at The Railway Tavern, our official cheering point, at mile 21. The Association’s Events Manager Trudi Sadler, said: “What an incredible day it was with our
Nicola Moger, whose partner lost his mother to MND last year
when she found out, about the diagnosis she didn’t understand or comprehend the journey her family was about to take.
“ It was wonderful to meet and thank so many of our runners and to congratulate them on their epic achievement. I’m so proud of them! It was a privilege to share their running journey with them.” She said: “As I’m running I will be thinking of this charity and everyone out there who can identify with my story. I know I am running this for you and most of all, I’m running for you Dad.” More than 50 volunteers encouraged our runners and welcomed over 200 people to our post-race reception with
dedicated events crew ensuring our fantastic runners felt valued and appreciated for all their hard work. The energy shown by those who ran and volunteered was truly inspiring. “It was wonderful to meet and thank so many of our runners and to congratulate them on their epic achievement. I’m so proud of them! It was a privilege to share their running journey with them. Here’s to next year! Joanne Roots celebrates her incredible achievement
ope with every step Z
öe Ball lent her support to the Association’s 75 inspirational #TeamMND runners at the Brighton Marathon in April. The TV presenter, who is a supporter of the Association, officially started the 26.21 mile race in Preston Park on 17 April and cheered the runners along the course. The day proved to be a huge success for our Association runners who raised more than £57,000. Louise Jeffery ran her 15th marathon dressed as a lobster in memory of her friend Andrew Gaskell, who had MND and passed away in 2013. The 45-year-old project manager raised £1,500 in sponsorship and said: “Andrew was a wonderful person to be around. He had a cheeky smile and a positive outlook. I mostly remember his competitive attitude, saying he could out-run me – and he mostly did – but sadly we never got to run a marathon together.” 34-year-old Heather Tilley ran with her partner Ian Gardner and her brotherin-law Ralph Tilt, in memory of her mum, who had MND and passed away in 2013. She said: “Fundraising still keeps Mum here and in our thoughts, it really does. Her old friends and networks see it as a way to remember her so it’s been a really positive thing.” Heather has raised an amazing £12,000 for the MND Association in total. Dad-of-three Chris Spriggs trained for the Brighton Marathon by pushing his uncle in his wheelchair. Chris Spriggs and his uncle Andrew, who is living with MND, achieved a personal best of one hour 49 minutes in their last wheelchair half marathon. Chris said: “My uncle Andrew’s
Heather Tilley, who took part in the marathon alongside her partner Ian Gardner and her brother-in-law Ralph Tilt
Runner Chris Spriggs pictured with his Uncle Andrew, who is living with MND
Zöe Ball, one of the MND Association’s celebrity supporters, started the race and cheered the Association’s runners along the course
Perry Shears, pictured with his son, Charlie
courage and sense of gratitude, even in the face of the illness, gives me perspective. He still finds so much to smile and joke about, and never moans. It reminds me that running is a choice, not a chore; a gift, not a given. That I can run for a cause beyond myself is deeply motivating.” Chris raised £500 in sponsorship by giving away copies of his book, The Reason I Run: How Two Men Transformed Tragedy Into The Greatest Race Of Their Lives, in exchange for donations. Perry Shears completed a 26.21 mile race on a cross-trainer at his
local gym to raise over £1,300 for the MND Association. Perry was originally signed up to run the Brighton Marathon, but was forced to pull out due to injury. However he is not easily defeated. Instead, he decided to cover the marathon distance in four hours, starting at the same time and on the same day. After his challenge he was presented with a certificate and medal made by his son Charlie and wife Becky. Louise Jeffery, running in memory of her friend Andrew Gaskell, who took part dressed as a lobster
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care Silence Speaks
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ERENZA Floyd had a very personal reason for wanting to take part in the MND Association’s annual Awareness Month fundraiser, Silence Speaks. In April, Kerenza sadly lost her mum to MND and decided to take part in the silence to try and understand what she went through.
Kerenza Floyd pictured with her stepfather
She explained: “Despite having watched my Mum suffer in silence, to experience it personally was truly eye-opening. “I wasn’t sure what to expect, but was saddened to feel quite early on that my personality and my expression had gone along with my voice. I can now see why my Mum doodled so much when communicating, to add a personal touch.” She said the time it took to write or type things meant she used fewer words to try and keep up with the conversation. She also found that she would withdraw as she felt unable to join in. “The hardest thing to deal with was realising just how lonely, sad and frightened my Mum must have felt, not only having lost her voice but then her ability to write and hold a pen faded too. I am so glad I kept my promise to her by doing the silence.” Kerenza added she had raised £1,071 so far. Staff at the MND Association’s head office also took part in Silence Speaks in June. As well as raising money by keeping silent, staff also took part in a range of silent activities including charades, a leg wax, an auction and a silent sweet shop. The event raised more than £600.
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Celebrities support A glittering, star-studded evening of music, dance and entertainment has raised more than £80,000 for the MND Association. Hosted by TV and radio presenter Zöe Ball, who lost her stepfather Rick to MND in 2012, the OpenMiNDs Ball was held at the Bloomsbury Ballroom in May and organised by a committee led by Association visitor Justin Anderson. The event featured performances by Suggs from Madness, Mark King from 80s chart-toppers Level 42, Janette Manrara and Aljaz Skorjanec from Strictly Come Dancing, Michael Ball OBE and the Strictly Come Dancing band, led by Dave Arch.
“Zöe and the OpenMiNDs committee have put on a stunning evening of music, fun and glamour which raised a huge amount of money and created much needed awareness.” There were also appearances from Zöe’s husband Norman ‘Fatboy Slim’ Cook, Katie Derham, Jeremy Vine and Annabel Giles. Zöe said: “It was an amazing night, such a brilliant bunch of sparkling talent and performers with a fabulous disco to end – my kind of night! We are so thankful for everyone who came and helped to raise so much money for the charity. Paying tribute to Rick, Zöe said: “We knew little about MND before Rick, our wonderful stepdad, was diagnosed in February 2012.
Guests enjoy the entertainment at the OpenMiNDs Ball
“He was hardworking, fit, funny, daft, a loving family man, dear friend and much adored Grandad. We were horrified to learn how the disease would manifest and how the average life expectancy is two years. “We hoped so dearly this wouldn’t be the case with Rick. The speed of his deterioration was brutal. He died on December 16, 2012 aged 61. His strength, bravery and love will stay in our hearts forever.” MND Association chief executive Sally Light, said: “Zöe and the OpenMiNDS committee have put on a stunning evening of music, fun and dancing which raised a huge amount of money and created much needed awareness. “Zöe and her family were devastated to lose a loved one to MND and we’re thrilled they have helped to create this event to help people currently living with the disease and their families.”
Katie Derham and Jeremy Vine, Patron of the West London and Middlesex branch of the MND Association
Suggs entertains the audience
All photographs by Hugh Thompson
people living with MND T HE Royal Patron of the MND Association, HRH The Princess Royal attended a reception for volunteers, supporters, celebrities, fundraisers and our partners which was held in London in March. Hosted by the MND Association, the event was held to allow our supporters to come together and share their stories about what inspires them to continue their work on behalf of the Association. Everyone who attended was invited to bring an item along with them which had inspired their MND journey and they were added to an Inspiration Board which was on display during the evening. Some brought along pictures of those whom they had lost to MND while others chose to bring medals they had won at marathons they had taken part in to raise money for the Association. Stephen Rhodes, who is living with MND, spoke movingly about his experience and music was provided by students from the Royal College of Music, which adopted the Association as its Charity of the Year in 2015.
The MND Association’s Royal Patron, HRH The Princess Royal is introduced to Jeremy Vine
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David Setters, who is living with MND, pictured with ZĂśe Ball, MND Association Chief Executive Sally Light and supporter Michael Ball OBE
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campaigning
Fantastic start getting councils to champion the Charter
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HE success of the MND Association’s Champion The Charter campaign is growing with 50 councils being approached to sign the Charter since our campaign was launched in March. Councils play a key role in delivering many of the services people with MND and their carers need – services such as social care, housing and housing adaptations as well as carers’ services. It is important that councils, and those working with them, are better informed and understand the needs of people with MND. The MND Charter, which outlines the care people living with MND and their carers should expect, is an important tool to help make this happen. Lord Porter of Spalding CBE, Chair of Local Government Association (LGA) is supporting our campaign.
“Once a council has adopted the Charter it can be used to address any local issues that arise. It also raises awareness among councillors, building a connection you can use in the future.” He said: “Only those people who suffer from, or care for someone with motor neurone disease, really know the impact it has on everyday life. It is crucial that access to local services and specialist support is readily available to those who need it. The MND Charter and the campaign to Champion The Charter are great examples of how those people with the knowledge and experience have been able to help show the rest of us what we can all do, in our own small way to ease some of that impact.” Campaigns Contact volunteer Heather Smith, was successful in getting Swindon Borough Council to adopt the MND Charter. She said: “Once a council has adopted the Charter it can be used to address any local issues that arise. It also raises awareness among councillors, building a connection you can use in the future.” Asking your council to adopt the MND Charter can be really easy to do. Ian Lawson who is living with MND,
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Heather Smith
Ian Lawson
approached North Yorkshire County Council to adopt the Charter. Ian said: “Councillor David Chance was at Cambridge University when Professor Stephen Hawking was there so was aware of MND. He watched The Theory of Everything last year. He listened one at a time to five preloaded statements that I had recorded, then we discussed each part as the conversation progressed. “He committed to taking my request to a formal meeting with the corporate director of health and adult services and the head of the team at the county council tasked with implementing public health policy. Finally, he promised to
keep me informed of progress. It was a very positive outcome and more than I hoped for.” If you want to get your council on board, then please read our campaign guide to help you get started. To access the guide online, go to www.mndcharter.org/ the-mnd-charter/campaign-materials Alternatively, you can request a printed copy, by phoning Tina Downs on 01604 611684. For further information about the campaign, visit www.mndcharter.org or phone the Campaigns Team on 0207 250 8447
Champion The Charter in Wales and Northern Ireland Now our Assembly election campaigns are over, we are encouraging councils in Wales and Northern Ireland to adopt the MND Charter too. A number of campaign resources for councillors in Northern Ireland are now available, and some of our key campaign materials have also been translated into Welsh. These are available at www.mndcharter.org
MPs hear carers’ concerns
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strategy would help carers understand early 40 parliamentarians what support they should expect.” gathered in Parliament in May Deidre spoke movingly about her to hear the concerns of carers of experiences of caring for her husband people with motor neurone disease (MND). Roch and the importance of fast access Deidre Maher, whose husband Roch is to support for both the person with MND living with MND, spoke at a joint meeting and their carer. Deidre also described between the All-Party Parliamentary how a relationship can change when Groups on Carers and MND. someone takes up a caring role for a The Government is currently friend or relative. developing a new strategy on carers and the purpose of the meeting was to discuss the contents of the strategy with Minister for Community and Social Care, Alistair Burt MP. Susie Rabin, Head of Policy and Campaigns said: “It was an excellent meeting with a good turnout of MPs and a clear commitment from the Minister to support carers. The Minister spoke about the importance of supporting carers in order for them to continue their caring role and how the Deirdre Maher, Barbara Keeley MP and Richard Arkless MP pictured at the event
Happy to support MND – Hapus i gefnogi MND!
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HANKS to the efforts of all of the MND Association’s supporters across Northern Ireland and Wales our election campaigns Every Breath Counts and MND Won’t Wait were both huge successes. To help candidates understand the impact of MND, we highlighted the importance of respiratory care in Northern Ireland and timely and accurate diagnosis in Wales. Over 100 candidates and a third of new Assembly members pledged support for our campaigns, with new supporters continuing to join us. We’ve also had some great statements of support from politicians of all parties including, “Hapus i gefnogi MND! Happy to support MND!” The MND Association’s Campaigns Manager, Tim Atkinson said: “We want to thank you for all you’ve done to get the message out there and make politicians
aware of MND. You’ve sent emails, chatted to them on Twitter, invited them to branch events and even quizzed them at hustings. In short - you’ve been amazing!” Now the elections are over, the MND Association will be asking the new Governments in Northern Ireland and Wales to work with us to improve care for people with MND. We’ll also be talking to them about how they can stand up for people with MND in their own constituency and we will be encouraging them to help persuade councils to adopt the MND Charter. For more information please see www.mndassociation.org/everybreath (Northern Ireland) and www.mndassociation.org/mndwontwait (Wales). You can also contact Campaigns Manager Tim Atkinson on 01543 415121 or tim.atkinson@mndassociation.org
Breakfast at the BBC to discuss MND Guideline
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breakfast roundtable at the BBC hosted by broadcaster Jeremy Vine was held last month to discuss the next steps in implementing the National Institute for Health and Care Excellence MND Guideline. Representatives from royal colleges including the Royal College of Speech and Language Therapists, College of Occupational Therapists, and key MPs were present at the event to discuss how they will be moving forward with plans to implement the guideline which was published in February. In addition, people living with MND also attended to explain exactly what the guideline means to them. The MND Association has been working on a NICE-led video, featuring chief executive Sally Light, and will be engaging with key groups to make sure that the guideline is implemented locally and makes a difference to the lives of people living with MND. Want to know more about the NICE Guideline? Turn to pages 6 and 7.
Pick up your campaigning toolkit
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ON’T forget - the MND Association’s campaigning toolkit is available now! The pack includes ten factsheets and offers guidance for campaigners and volunteers about how to run different campaign activities and events. You can order a copy of the folder, which includes an ‘Ask my why I campaign’ pin badge by emailing the Campaigns Team at campaignsmaterials@mndassociation.org The factsheets can all be downloaded from our website at www.mndassociation. org/campaigningtoolkit www.mndassociation.org
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tribute funds
Family unites to fight The Derrick family bravely explain how MND continues to affect all of their lives – and how they are all determined to fight back in memory of their beloved wife and mum.
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HEN Jean Derrick was diagnosed with MND neither Jean, nor her family, could have imagined just how much their lives were about to change. Jean, who lived in Plymouth with her husband John and children, Lucy and James was diagnosed with the disease after experiencing problems with her speech. It was almost two years before motor neurone disease was diagnosed by Jean’s consultant, as he wanted to be entirely sure of his diagnosis. Her husband John said: “In early autumn 2010 she quite quickly lost the ability to speak, by Christmas it was gone forever. “Luckily, these were the only signs for a while. Eating became an increasing problem over the next couple of years but walking and using her hands mercifully did not really become hard, and later impossible, until the summer of 2013. “This meant we could still get on with life, travelling to Florence in 2011 and to Rome for our Ruby Wedding Anniversary in April 2012. We went to the USA in October that year and then, in January 2013, we travelled to Estonia with family.” Jean and John met first met at a family party on Christmas Day 1968 and married in 1972. She worked in local government, loved shopping and travelling and
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John, Lucy, Jean, James and his wife Deb pictured on Mother’s Day 2013
together the couple supported Plymouth Argyle Football Club. Shortly before Jean lost her battle with MND in December 2013, the family discovered that Jean had the genetic form of the disease and that her daughter Lucy also shared the same gene.
It was this discovery which led to the family setting up an MND Association Tribute Fund in Jean’s memory and fundraising to support the work of the Association. John said: “Jean discovered that she had the C9orf72 gene to be precise.
back against MND
Lucy and James when they got engaged on New Years Day 2016
For Lucy, discovering that she shared the same gene as her mum has been a difficult journey. She said: “I got tested before mum died and the results showed I had the same genetics as her. I wanted to find out more about the research projects and see if there was anything I could do. “The other side of it is that I am 32 now and my fiancé James and I are getting married in September. “We are planning children and we wanted to look into the options.”
“The Jean Derrick Tribute Fund provides a focus for our fundraising efforts and is a permanent record of all those donations received in her memory and is used to continue the fight against this dreadful disease.” “The research into the genetics of MND’s causes seems an increasingly important route into understanding the illness and since Lucy has been found to carry the mutation, this is all the motivation we need. We have so far raised around £10,000.”
Lucy’s brother James has helped to raise money for the Tribute Fund by taking part in the Plymouth Half Marathon for the past three years and the family has also received support from friends and the chairman of Plymouth Argyle Football Club, James Brent.
John explained: “Jean’s best friend Sue raised hundreds of pounds with a cake stall last year, but the biggest single amount came from James Brent who took part in an Ice Bucket Challenge. “At the appointed half-time, the deed was done but the stadium announcer said the money would be sent to the ALS fund. This would not do! “Luckily, I knew the man who ran the ticket office and caught his eye. He kindly arranged for me to meet Mr Brent in the Board Room so I could put him right about the MND Association. “I spent a few minutes with him and the club president and managed to get the £1,000 going in the right direction. “Jean’s MND Association Tribute Fund, The Jean Derrick Tribute Fund, provides a focus for our fundraising efforts and is a permanent record of all those donations received in her memory and is used to continue the fight against this dreadful disease.
The family
I would encourage anyone to set up a Tribute Fund and perhaps, like us, take up the free option to build its own, very individual, website. “ If you would like information about setting up a Tribute Fund in memory of someone special, please visit www. mndassociation.org/tributefunds. Alternatively, please call 01604 611864. For more information about Familial MND contact our Research Team on research@mndassociation.org or 01604 611 880 or contact MND Connect on 0808 802 6262 or email mndconnect@mndassociation.org.
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fundraising Ava’s special birthday gift for her uncle
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EN-year-old Ava Graham has raised more than £400 for the MND Association as a special birthday present for her uncle Martin, who is living with MND. Ava bravely decided to take part in an Ice Bucket Challenge at her school in February to raise funds which she hopes will help to make her uncle better. Ava’s proud mum Mishe said: “On a cold February day Ava’s school gathered to watch her do the challenge. The school was very supportive and thanks to donations in school and from friends and family, Ava collected £438. “We are so very proud of her, she is such a thoughtful, loving child.”
Geoff Pike’s Barmy Army celebrate reaching the summit of Mount Snowdon
Celebrating the life of someone special
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WENTY years after losing his beloved Dad Geoff to MND, Gareth Pike, his family and a group of friends climbed Mount Snowdon to support Walk to d’feet MND and to remember him and celebrate his life. Geoff Pike’s Barmy Army took part in the challenge in April raising more than £7,500 for the MND Association through the Geoff Pike Tribute Fund, which stands at more than £11,500.
The team started fundraising on behalf of the Association in October 2013 and also took part in a Tough Mudder Challenge which raised £4,000. This time though, the team was determined to reach the summit of Mount Snowdon, particularly as Geoff was such a proud Welshman. For more information about Tribute Funds turn to pages 26 and 27
Have you got what it takes run 516 miles in 2016?
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on a virtual challenge of running RIENDS Mary Davies and 874 miles during 2015 which I Rebecca Davies have helped completed. raise thousands of pounds for “I wanted to set a 500 mile charity by setting up a challenge challenge for 2016 to help motivate to run 516 miles in 2016. people and raise money for charity. More than 1,000 runners To incorporate the year of 2016, I from across England, Wales and added 16 miles to the 500. The 516 Northern Ireland have signed up challenge was born! for the challenge after reading “Some people have finished the about it on Facebook. challenge already and others are All the money raised will be Catherine Davies, Mary Davies, Rebecca Davies and Larakia West get ready to take getting close to finishing, but we divided equally between the MND part in the 516 challenge are finding that people still want to carry “At the end of the year, Rebecca decided Association, which Mary is supporting on, so a new chart for 1,000 miles has been to do a 150 mile challenge for 2015 and and Bowel Cancer UK, the charity being produced for an extra donation to charity. to have a medal made for the challenge. supported by Rebecca. “This really is a very simple event to take Again this was for friends, but she decided Mary explained: “Our story began back part in. You simply pay a registration fee, to open it up on Facebook to try and get in September 2014 when Rebecca had receive a running chart and then complete more people involved and 140 people the idea to challenge a handful of friends your runs at a time that suits you and tick signed up. to run 50 miles between September and off the distances on the chart as you go.” “By this time I had taken my running Christmas. The reward was a meal together. For more information about the more seriously and began training for She made a 50 mile progress chart to annual event visit www.facebook.com/ a half marathon later that year, raising help keep track and, for me, it was a good groups/1149870165031894 money for the MND Association. I took motivator to get back into my running.
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Claire takes to the stage at charity gala The performers take to the stage at the charity gala held to raise money for the MND Association
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TAR of stage and screen, Claire Sweeney took part in a charity gala to raise money for the MND Association. Organised by Neil and Carl Rutherford who lost their father to MND last year, the event held at the Gordon Craig Theatre in Stevenage in April raised £9,000 for the North and East Herts branch of the MND Association. The performance was hosted by Neil and Carl, who have worked in professional theatre for many years, alongside Claire and included songs from famous musicals sung by leading artists from hit West End shows accompanied by a 32 piece orchestra and 40 strong choir.
Carl’s son, Josh, and step-daughter Amy, also sang much to the delight of the audience and Nicola Cardall, whose stepfather died from MND read a poem specially written for the event.
“It was a thrilling, emotional and exciting evening, and we were delighted with the amount of money raised.” Neil and Carl said: “It was a thrilling, emotional and exciting evening, and we were delighted with the amount of money raised. “Dad knew about the concert as we
started organising it last year and we are sure he was looking down and having a great time singing along. He had asked us to raise awareness for the disease and make money for the charity. We feel we did that and he would have been enormously proud. We’re so grateful to everyone who was involved and gave their services for free.” Carl also hosted an interview with the MND Association’s Regional Care Development Adviser, Liz Pybus, who explained more about disease and the reason for needing to raise money. Carl and Neil would like to thank the North and East Herts Branch for all their help and support.
Steve scoops outstanding achievement award
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ONGRATULATIONS to Steve Cliff who jointly won the Judge’s Outstanding Achievement Award at the Charity Staff and Volunteer Awards 2016. Steve was diagnosed with MND in
May 2015 and together with the support of friends and family has raised over £25,000 for the MND Association in the past six months. The award winners were selected by the Charity Staff Association Board of
Patrons, all of whom are charity leaders from across the UK voluntary sector. Sadly, Steve was on holiday and unable to collect the award personally, but his granddaughter Emma collected it on his behalf. www.mndassociation.org
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Powering forward for Cyclists from across England, Wales and Northern Ireland have been pedalling hard to raise money for people living with MND. In this feature, some of our cyclists tell the personal stories behind their challenges.
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UNDREDS of cyclists powered their way into the record books at a starstudded event held to raise money for the MND Association. The Rave and Ride event, which attracted celebrities including Girls Aloud’s Sarah Harding, reality TV stars James Argent, George Gilbey and Callum Best, broke two world records – one for the most money raised in eight hours by static cycling and another for most mechanical energy produced by pedalling static bicycles in one hour.
“My family has had a lot of help and support from the Association and I wanted to do something different to raise money. I’m hoping to raise around £5,000.” In addition, the event, which was organised by entrepreneur Steven Smith, who lost his mum Genifer to MND, raised more than £35,000, taking the amount he has raised personally on behalf of the Association to more than £150,000. Speaking after the event, he said: “I’m broken, destroyed, emotional and elated. “I am overwhelmed with the support and the people who took part or donated are heroes. There is still a chance to donate to make as much money for the MND Association as possible. I will not stop until I find a cure.” The money raised will be used to fund another PhD student at the Oxford Centre for Research and Care at the John Radcliffe Hospital.
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grandfather cycled 400 miles in just four days to raise over £2,000 for the MND Association in memory of his friend. 70-year-old Andy Fisher from
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The cyclists taking part in Rave and Ride
Grantham took on the Three Cities Cycle from London via Bruges to Amsterdam from 8-12 June. He signed up to the challenge after his friend Bill Hislop, who had MND, passed away last December. Andy cycled with Bill’s sister Liz Hall
and friends John Stevenson and together they raised £10,000. Andy said: “Bill loved the great outdoors and was a very active person enjoying hill-walking, mountain climbing, mountain biking, skiing and golf. He was also a very clever man. Life can be so cruel.” A man who was diagnosed with brain cancer four years ago cycled 60km around London at night to raise money for the MND Association.
P Steven Smith receives his certificate from the Guinness Book of World Records
ETER Selley, 52, who is now in remission, raised over £2,300 in the Nightrider 2016 Cycle on 4 June on behalf of his brother Richard, who is living with MND. Dad-of-two Peter, who works as a book expert at Sotheby’s Auctioneers, said:
people with MND
Stuart Burns and his team took part in the London Nightrider event
“Last year my brother Richard who is 62 was diagnosed with MND. He is remaining as upbeat as possible, but funds for more research and care are urgently required. Despite the fatigue and myalgia I encounter with my own illness I am determined to do what I can to raise more awareness of MND and to do my bit to raise funds for MND research.”
Peter Selley and Fotis Christodoulopoulos at the London Nightrider event
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TUART Burns from Rotherham, also took part in the Nightrider Cycle, alongside a team of 30 other cyclists, to raise money for the MND Association on behalf of his brother Stephen who was diagnosed with MND three-and-a-half years ago. Stuart said: “My family has had a lot of help and support from the Association and I wanted to do something different to raise money. I’m hoping to raise around £5,000.”
Rachael Marsden was also part of a team which cycled throughout the night
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achael Marsden and the Oxford MND team, together with a team from the National Hospital for Neurosurgery and Neurology in London, also took part. Rachael said the event was a real challenge, taking the team past many of London’s sights as well as some of the city’s more difficult terrain including Highgate Hill and Sydenham Hill. She said: “Foolishly I thought London would be flat, but I was wrong! It was hard work, cycling from 11.30pm until 7am. It was so dark we couldn’t see each other and rode in pairs instead. We did manage to get some great pictures of London at night.” Fancy taking part in the London to Brighton cycle ride on 11 September and raise money for the MND Association? For more details contact Stephanie Steward at stephanie. steward@mndassociation.org
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fundraising A moving personal response to the landscape and wildlife of Westmorland
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omeground is a book of poetry written by Brian Fereday over many years, which was published a year ago. Brian was diagnosed with MND in April 2014 and sadly died in February 2016, aged 65. Most of the poems describe the beauty of the countryside, and are a very personal response to the orchards, woods and their wildlife that were such a huge part of his life – both in his work as a forester for the National Trust and personally. While some of the poems are celebratory, others show Brian’s feelings of loss for a landscape he knew he was losing. When Brian was given his diagnosis, he felt that producing the book was a way of ensuring a legacy for others to connect with the places that had meant so much to him. As Brian lost his speech, his iPad became a lifeline to him, and enabled him to complete work on some of the poems published in the book. Homeground is illustrated with paintings by Brian’s wife Fiona Clucas, and was the third of three projects they shared. Two previous exhibitions were Shared Earth and Journeys North. The book is available from www. lowsizerghbarn.co.uk. A percentage from every sale is being donated to the MND Association. Brian is survived by his children Rachel and Sam and his wife Fiona, one of the region’s best known wildlife artists.
Running every step in memory of Tony
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BUSINESSMAN is running around the perimeter of Wales to raise money for the MND Association in memory of his friend, Tony John. Robert Chapman, 56, started the 1,030 mile challenge on 26 March in Poppit Sands and will end it at the same location on 30 July, the first anniversary of Tony’s death. Each leg of the journey, which has been named The Moon Shadow Wales Challenge, will be run over consecutive weekends.
“We appreciate everything done to continue raising awareness of this cruel disease and especially the aim to raise money for research.”
Robert Chapman at the start of his run
In December 2013, Robert learned that Tony had been diagnosed with MND and he sadly died on 30 July last year. Robert said: “Sometimes in life, one is moved to do something tangible. This has happened to me in my desire to raise money for MND research in memory of Tony and to help prevent the six people per day dying from the disease. This endurance challenge will also be a personal journey.” Tony’s wife Lynne said: “We appreciate everything done to continue raising awareness of this cruel disease and especially the aim to raise money for research.”
Finding a way to stamp out MND
S Brian Fereday and his book of poetry
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TEVE Flavell is on a mission to stamp out MND – but to do it he needs your help. Steve’s mother Hazel was diagnosed with MND in 2007 and following the death of his father two years ago, is now her full-time carer. Having witnessed the devastating effects of the disease first hand Steve, who lives near Stoke-on-Trent in Staffordshire, decided to support the MND Association by raising money through stamps. People donate used stamps through
his website www.stampoutmnd.co.uk and he sells them with all the proceeds being donated back to the Association. So far he has raised more than £400 within six months. He said: “I care for my mother 24/7 and I do everything for her. It is really important for me to try and give something back.” If you would like to find out more you can search for Steve on Facebook and Twitter using StampOutMND or visit his website.
A chance to try something new?
Tommy reaches new heights
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man from Liverpool who is living with MND has raised more than £13,000 for the Association by taking part in a tamdem skydive.
“When I was diagnosed I knew nothing about MND and I just knew that I wanted to fundraise. I don’t like heights, but the skydive was great.”
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Tommy Rowe, who is a member of the Merseyside Branch of the Association was diagnosed with MND in June last year and decided to take part in the sky dive in October to raise money and awareness. He said: “When I was diagnosed I knew nothing about MND and I just knew that I wanted to fundraise. “I don’t like heights, but the skydive was great. “I would like to thank all the people who have support me including my colleagues and employers at Getrag Ford.” Turn to pages 34-36 to read more stories from our amazing fundraisers.
Putting the fun into fundraising
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Daisy Cosker and the Association’s Director of Engagement, Chris Wade
omedians helped to put the fun into fundraising at an event held in London in October. Daisy Cosker the South London Group’s fundraising and events coordinator, organised the evening of comedy and magic, which was held at The Tattershall Castle, Embankment. Daisy said: “After doing a number of strenuous fundraising events for the Association including a marathon and swimming the Solent, I decided that I would arrange an event that was a bit less physical and even more fun. My close friend Jess and I decided a stand-up comedy night would be the ideal way to have a fun evening and raise lots of cash at the same time.” The evening, which raised £2,200 included sets from magician Neil Henry and comedians Tom Ward, Jamali Maddix and Pete Johansson.
HE chance to experience the freedom of sailing on water is now available to even more people living with MND. Thanks to the support of more than 200 disabled sailing clubs across the UK there are even more opportunities to experience sailing in a safe and supportive environment. Jane Houchin was a member of Oxford Sailability for 30 years and is now a member of the Oxfordshire Branch of the MND Association. She said: “You might be pleasantly surprised to discover an amazing freedom of movement on the water while enjoying exploitation of wind power in specially designed dinghies or even yachts and tall ships. Dinghy-sailing is one of the few sports in which able-bodied sailors and disabled sailors can participate on equal terms, with wind power replacing muscle power. Many clubs also have wheelchairfriendly pontoons with hoists if needed.” For more information read the feature below by visiting www.mndassociation. org/sailing feature
What can I do
today?
Retired firefig always been hter Dave Whymark, 77, has an ‘action out for a support/ad new challe man’, on the look vice seem nge. s to At the age important part of qualit miss this very of hobbies includ 73, his high-energ y of life. “From the his adapted y ed hang internet, vehicle. boarding, Woolversto I found The But gettin motorcycli gliding, kite ne g out and ng and roller So when for the disab Project, providing about the about isn’t grandfathe blading. sailing led at Alton exhila just diagnosed r Dave was Ipswich – physical activi ration of takin with what a find! Water, near g part in ties. faced a challe MND four years “It is ideal Dave expla ago, he nge and of ined: “You I go a different to fuel his there every they are a up on all don’t have kind – how passi great group week the sorts to give for an active on of things volunteers, of selfless can conti you enjoy qualif and nue people with ied , you lifestyle while after becom to take part in activi all levels ties even ing of with a disab living “Trying new disabled. ility. activities Dave expla has given me an “Until I was ined: achieveme 73 nt in life really active I was and also , busy leads to a enjoying fuller doing social life. all sort of “When I go thing – hang glidin s From left: carriage drivin Dave carriag rollerbladi g, e driving, gliding I have a laugh g, ng, kite board and land yachtin Over the ing, moto with the g years I’ve rcycling. helpers. also climbing, disability There are wind surfin done rock are various g, micro lighti paragliding good socia catered for. It’s also functions and sport ng, l event.” a very and s diving. “In fact I And that by many lunches organ was still roller wasn’t all. of the clubs ised if it wasn The whee also tried blading I’ve been with and ’t for the lchair-user his involved I keep in MND I’d still at 70 and contact with “On diagn boat sailin hand at land yacht I’ve be met.” doing it! osis, like ing, g, gliding, the peop everyone MND, I had joined a disab model swimming le Dave, who else with to reassess group, and led set up a hang into accou my future jump then after in the saddl decided to his retire nt , takin ment, said gliding school e and give and fitnes my changed life expec g go – anoth those who horse riding s. I decided er first. give up their he is indebted to a I had to make tancy the most “I enjoyed with activi time to supp of what I disabled ties. had. Being ort didn’t mean I’d never “All of these disabled ridden befor riding, even thoug I had to lose activi h learning e” he said. longer able ties depe interest in on volun new “I’m no nd so much teer supp to challenge.” skills or the excite ort. Those doing disab sit up straight, so prepared ment of a who are now I’m led carria to give up their time ge drivin But thank “But over people like g instead. s to assist time my me. I am Dave, who to his internet resea MND has progressive very grate they do.” got lives in Brent rch, ly ful for all with his wife wood, Essex stand unaid worse and I can no As for the longer ed. future, Dave interesting Phyllis, came up with to cope with As I’ve become acceptance says his options, includ unable some of something found new some of the activi ing sailin enables him the disease’s progr he hadn’t ties, I’ve g– ones. There ession to live life tried befor He expla activities for today “Unless you e. ined: you can learn are plenty of new . can cope to find inform “Initially, I found become , even after the inevit with what disabled. it difficult ation abou able with you’ve is ” quality of this t main Dave intervening disease, the tainin life also boug years will ht an all-te physical activiin the aspect of what g with moto explained. be blighted,” rrain scoot rcycle tyres, ties you can “I want to he er could still which mean be do. All officia restricted enjoy the by disability. normal and not t he l coun walkers. He me to be is still able tryside alongside able to wake It is important for to drive, think ‘what up thanks to can I do’ rathe each day and can’t I do’ r than ‘what . ” Thanks to volunteers and spon Woolversto sors, The ne Project, providing a sailing oppo charity, has been freedom of sailing disabilities rtunities with the for people fully-qualif for 20 years help and with ied instru . Volunteers tuition of ctors, in a Some of safe envir our sailor help them take the sailors out onment. s have sailed have no exper in on before and refreshmen and out of the dingh the water; ience at all. some ts. ies and provi Sessions ” are Chair Julia de all year round held at Alton Wate Dansie, said Julia Dansie disability r, near Ipswi , and at Wool all levels are catered Orwell, in ch, of physical verstone, the summ for and a She expla on the River hoist is availa er mont ined: “We an accredited aim to give ble. Royal Yacht hs. The Project is people the Training ing Assoc organisatio fun and iation (RYA) 04 thum n. Find out more b print Sum at www.wool mer 2014 verstonepro ject.org.uk
Experienci
ng the fun
fea
“I want to be normal an d not restricted by disability. It is important for me to be able to wake up ea ch day and th ink ‘what can I do’ rather than ‘w can’t I do’.” hat
and freedo
m of sailing
thumb print Summer 2014
Flashback to our Sailability feature in 2014
For more information about getting involved in sailing visit www.rya.org.uk.
Send your fundraising stories and experiences to editor@mndassociation.org
www.mndassociation.org
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Silence Speaks: Eamonn Gray, who is living with Kennedy’s disease played a key role in encouraging people to take part in Silence Speaks during Awareness Month in June. Eamonn is Essex County Council’s face to face supervisor and enlisted the support of Essex County Library Service to promote the Association’s sponsored silence event. Last year, Eamonn and his colleagues raised an incredible £7,000. Eamonn is pictured with the council’s head of face to face services Amy Donovan at their cake stall.
Aiming high: The sky was the limit for fearless fundraiser Dannielle Carr who raised more than £6,600 for the MND Association by taking part in a skydive. Dannielle’s stepfather Rob Drew is living with MND. She said she hoped to take part in more fundraising events in the future and thanked the Association for their support on behalf of Rob.
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For Bob: Inspired by close family friend Bob Langham, Michelle Mellis took part in her first ever marathon in Paris in April raising over £2,600 for the MND Association. Bob followed Michelle on many of her training events in his wheelchair, but sadly died in March. She said: “It was a no-brainer for me when it came to choosing a charity and I remember writing a message to Bob to ask if he was happy for me to run in his honour. It took me about an hour to write because it just pulled on my heart strings and I was a blubbering mess, but having that emotion and reading Bob’s response was all I needed to convince myself that I could and would do this!” Bob is pictured with his family and Michelle, right.
Rosanna Turk Photography
Thank you...
to all those who raise vital funds and awareness to support our work. Share your pictures at www.facebook.com/mndassociation
In memory of Hazel: Brooke Gardener-Wollen raised £895 for the MND Association by taking part in her first Point to Point race in Didmarton, Gloucestershire in memory of Hazel Bleaken. Hazel was diagnosed with motor neurone disease in October 2014 and sadly died in July last year. She had always been a keen horsewoman and continued to ride using specially adapted tack, for as long as possible. Riding Gonetdeveon, Brooke, pictured, came third.
Ain’t no mountain high enough: Ross Mckechnie climbed Mount Snowdon and raised £1,175 for the Association in memory of his dad, Lewis. He was joined by Tom Howard, Owen Mulholland and Aaron Bill, pictured, on the climb which took five hours, 55 minutes. Ross said: “The climb was definitely harder than expected and we were gobsmacked by the amount of snow we encountered.”
Hitting the right note: Wedding singer Wayne Farrow ran 408km in 30 days in November to raise money for the MND Association. Wayne was running in memory of his friend Fergus Brown who lost his battle with MND in October and raised a fantastic £1,760. He is pictured right, with his friend Russell Shaun. You’re hired!: Young entrepreneurs of the future where given the chance to turn £100 into £1,000 in an ‘Apprentice’ style challenge held in Hertfordshire. Supported by their teacher Gary Moore and their mentor Paul Haynes, manager of the Howard Shopping Centre in Hatfield, students from Monk’s Walk School in Welwyn Garden City were among those who used their business skills to make money. The team raised £1,149.72 which they decided to donate to the North and East Herts Branch of the Association. Pictured is Heather Hurley from the North and East Herts Branch receiving the cheque from teacher Gary Moore and students from Monk’s Walk School.
Like mother, like daughter: A mother and daughter team from Sale has raised £3,160 for the MND Association by taking part in two marathons. Sue Goddard completed the Wilmslow half marathon, while her daughter Laura did the Manchester marathon. Both women raised money for the Association on behalf of their friend and neighbour, John Boulton who is living with MND.
Our vision could be your legacy We rely on voluntary donations of which legacies are a vital source, accounting for almost a third of our total income over the last decade. Without legacies, we could not maintain the same high level of investment in research or the breadth and quality of our care and support services.
So we are asking for your help, to ensure we can continue our fight against MND, by leaving a legacy to the MND Association in your Will. It’s straightforward to do and it’s free of inheritance tax. For more information and to request your free Legacy Information Pack, please visit: www.mndassociation.org/legacies. Alternatively, call Stephen May on 01604 611865 or email legacies@mndassociation.org.
Please remember people with MND in your Will.
www.mndassociation.org
Registered Charity No. 294354
If we are to achieve our vision of a world free from MND, while also providing the best possible care and support for people affected by this cruel disease, then we must continue to raise the substantial income to meet the costs involved.
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Up for the challenge: Warwick Nixon from Biddulph, Stoke-on-Trent raised £850 by taking part in the Balmoral 5k. Watched by his daughter, Rebecca Fairman and his wife Nicola (pictured), Warwick completed the course with a time of 30:51. He was inspired to take part after his father was recently diagnosed with MND.
Fighting back: Nadine Stevenson and her friends and family organised a charity night at The Lord Hill pub in Market Drayton on Saturday 23 April to raise money for the MND Association. Nadine’s dad Steve Hadley is living with MND and he has set-up a Fightback Fund to raise money. They collected over 100 prizes from local businesses to auction on the night including a holiday in Barcelona, signed football shirt from Wolverhampton Wanderers and an executive box at Stoke City Football Club. The auction raised an amazing £5,807.61 and is the biggest event they have organised.
Serving up a treat: A curry lunch and dance organised by Rita Fernandes in memory of Ivor Pereira raised more than £1,400 for the Association. The event was organised with help from the Leicester Goan Association and was attended by Paul Wilcock from the Leicestershire and Rutland branch, pictured.
Pennies and pounds: Firefighters from Stansted Mountfichet raised £2,500 during a collection in the town just before Christmas. Firefighter Ben Hutson said: “Every Christmas we organise a street collection to raise money for charity and on this occasion we chose the MND Association. “I am personally touched by this charity as a very close family member sadly passed away in August 2015 from this horrible disease. “A great big thank you to all who helped and gave us their pennies and pounds.”
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Making waves: Seven-year-old Leiah Pountney from Rugby took on a sponsored swim to raise funds on behalf of a family member who is living with MND, and smashed her £100 target raising a total of £310.
Send your fundraising stories to: editor@ mndassociation.org
From coast to coast: Jonathan Beardmore took part in a Coast to Coast cycle challenge from Whitehaven to Sunderland in May in memory of his friend Mark Scarff whom he lost to MND. Jonathan and Mark cycled together every weekend, up and down the lanes near their homes until Mark sadly lost his battle with MND. Jonathan said: “To try to help find a cure I wanted to do my bit. I also want to remember my friend who was with me, in spirit, along the way.” Jonathan has raised over £1,600 including a donation of £200 from his employer Perkins Engines. All funds have gone to the Mark ‘Scarffy’ Scarff Tribute Fund which has now topped £13,000.
The young ones: Two friends Imogen and Lillie, who are both aged seven, walked across the Humber Bridge to raise money for MND Association on June 12, raising £337.50 for the MND Association. Imogen’s uncle is living with MND and girls wanted to do something to raise money on the Association’s behalf.
Team work: A team of nine employees from Nippy Ventilators, part of B&D Electromedical, of Stratford upon Avon completed the Yorkshire Three Peaks Challenge in May. As if the challenge wasn’t hard enough, the team decided to carry the ventilators they produce, which are used by people with MND, with them on the trek. The team has raised £6,623 for the MND Association so far, with donations for the challenge still coming in.
A family affair: When Graham Rollinson was diagnosed with MND in July 2013 both he and his family decided they wanted to give something back to the South Yorkshire branch to thank them for supporting him. They decided to complete the Yorkshire Three Peaks Challenge and raised more than £1,500. Graham said: “The walkers were all magnificent and I am very proud of them all.”
Time for bed?: Clara Etherington and her friends, Alison, Jocasta, Liz, Tiffany and Sarah took part in The Great Knaresborough Bed Race on June 11, raising £490 for the new MND Support Group in York. The Great Knaresborough Bed Race is something different, part fancy dress pageant and part gruelling time-trial over a 2.4 mile course, ending with a swim through the icy waters of the River Nidd. The team had a fantastic day and really enjoyed the race.
A special bond: Best friends Rachel Jones and Andy Scully took part in the Lincoln Sprint Triathlon on May 1. Rachel is living with MND and did a 400m swim as part of the event. As well as completing the swim, Andrew also took part in a 22km bike ride and 5km run, achieving a personal best of 1:51:04. Andrew said: “The weather was brilliant and the people were great. What a great atmosphere.” Although Rachel knew swimming such a distance would be tough she was determined to complete it and together they raised around £1,000 for the MND Association.
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your voice 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 Voice, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email at editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.
“Thank you for helping us to make lovely memories”
I
was diagnosed with MND/ALS in April 2015 aged 44, after two years of ill health. I am married to Dan, and I have a son, Myles and stepdaughter, Lauren who support me and are so very, very special. I was very fortunate to obtain a grant from the MND Association to stay at the Legoland Hotel and Theme Park for two days on March 31 and April 1. My family and I had a wonderful time and we want to share our story with others as we have had fantastic support to help us make some lovely memories. It was my occupational therapist Nikki Matheson who applied for the grant on my behalf and got the ball rolling. My physiotherapist Sue Hood and Lynne Taylor from the West Park Community Neurology Rehabilitation Team based at Wolverhampton Rehabilitation Hospital provided us with the equipment and advice needed for our stay at Legoland. We were supported by Wolverhampton
diary dates
Gill, centre, with her husband Dan, stepdaughter Lauren and son Myles
Wheelchair Services, Maltings Mobility Centre and rehabilitation engineer Matt Myatt who provided me with ongoing advice and a motorised wheelchair which was invaluable for our trip. I had support from Compton Hospice who helped me to build my confidence
and gave me the reassurance that I would manage. A local taxi firm provided a mini bus and driver to and from Legoland free of charge when the cost should have been £250. My long-term friend and former work colleague Kerry Williams started a collection, lots of my colleagues and friends contributed and raised £350 towards our spending money. The Legoland staff were very helpful and helped to make our stay as comfortable as possible. I feel very lucky to have the support network I have and we are so very grateful. My husband spent around five hours completing a plaque made of Lego, to say thank you to the MND Association for the opportunity to visit Legoland. Just wanted to say a big thank you to everyone who made it possible, especially my husband, son and stepdaughter. Gill Shaw, via email
Talking Twitter
The Great Newham 10K 17 July 2016
How Twitter is keeping our MND family connected – follow us @mndassoc
Inca Trail to Machu Picchu 6–16 August and 11–20 November
Lesley Roberts @soulpunkpixie – 17 April Between them Chloe and Tom raised over £1406 for the @mndassoc in the @BrightonMarathn
Conquer Kilimanjaro 18–28 August and 6–16 October Fruit Shoot Mini Mudder Until September MND Association AGM 9-10 September Regional Conference, Leeds 29 October Walk to D’Feet MND All year round 38
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MND Association @mndassoc – 18 April @soulpunkpixie absolutely fantastic, please thank them both from us Paula Maguire MND @paulamaguireMND – 17 April @soulpunkpixie @mndassoc @BrightonMarathn Well done Chloe and Tom. A fantastic achievement and a great amount of money. xxx Greg Broadhurst @GregBroadhurst – 17 April @soulpunkpixie @mndassoc @BrightonMarathn Huge well done to them both Chris James @ChrisJamesMND – 18 April @soulpunkpixie @mndassoc @BrightonMarathn very well done Tom & Chloe great support for #MND
about us: The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. As a charity we rely on voluntary donations. Our vision is a world free from MND.
Tony Shepperd with grandson Ben and wife Penny
“We lived life to the full”
M
y nine-year-old grandson Ben, along with the rest of his class, had to produce a piece of creative writing, which they then had to read to the class. He produced this and there were quite a few wet eyes by the end. He also received a coveted Headteacher’s Award, which was well-earned. His grandpa, Tony, was adored by us all and was an inspiration to everyone – MND was not going to deprive him of living life to the full! After being diagnosed three and a half years ago and being given a six month prognosis and needing to be ventilated for all that time, we have travelled the world. In the last year, we have spent eight months on board the Balmoral cruise ship where we were looked after second to none. We were very lucky that Tony could eat, Where do you go when you die? Do you go to netherland or fly through the sky, Or do you have some little place, somewhere in outer space, Where do you go when you die? Where do you go when you die? Do you sing little babies’ lullabies, Do you stop people from trying to cry, Where do you go when you die? What do you look like when you die? Do you look like thy Lord
drink and speak normally, despite being on the ventilator. We were active members of our local group of the MND Association, attending monthly coffee mornings which was very important to him. We only returned from our last cruise two weeks before he died last November. My abiding memories will be the happy, positive way that we both dealt with the limitations MND put on us. We will also be grateful for the love and support of our children and seven grandchildren and all our many friends. Because of his inability to hug and kiss them he developed a special handshake with them, which they all treasure now. We proved to them all that life is for living and, although I miss him terribly, I am so proud to have been his wife and carer throughout his journey with MND. Penny Shepperd, Hampshire Or maybe Henry Ford What about a spirit Or maybe even a merit What do you look like when you die? Actually, I’d like Heaven’s door to open, For my spirit to walk in and have a life of eternal peace And let my spirit within, let my spirit within. By Ben Brown, aged nine
Website www.mndassociation.org
Social media Online forum A place for people affected by MND to share experiences and support each other. http://forum.mndassociation.org Facebook www.facebook.com/ mndassociation Twitter @mndassoc
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 8026262
mndconnect@mndassociation.org
Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org
get involved: telephone: 01604 250505 website: www.mndassociation.org email: enquiries@mndassociation.org www.mndassociation.org
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