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Spring 2009

The The Magazine Magazine the ofofthe Motor Motor Neurone Neurone Disease Disease Association Association

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Sarah’s Story hits the cinemas ● Unveiling our new look Celebrity joins in Firewalk Challenge


Contents

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Unveiling our new look

Carers’ pack

Research news

Editor’s Desk

As spring arrives, a traditional time for renewal, so too the Association takes on a new look.

Read about our plans to develop a comprehensive carers’ pack and how we are eager for those of you affected by MND, particularly carers, to come on board and help shape this important new resource.

New MND gene identified.

A selection of your correspondence and information.

6 Chairman’s column and latest news The latest news including celebrating our award win for our successful Research Foundation campaign.

8 Sarah’s Story Sarah’s Story our new awareness film hit the cinemas in February. The film is targeted at people who have little or no knowledge of MND and aims to create a ‘first stage’ of awareness that MND is a devastating disease. Read about the debate around this hard hitting approach, from the ‘real’ Sarah and from our trustees.

12 Telling it as it is Our readers share their inspirational stories of living with MND.

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Dr Martin Turner is a clinical researcher and hopes his latest project will help identify a predictable MND-specific ‘fingerprint’. Find out, too, about how you could get involved in this study.

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This centre pullout features the early days of the founding of our Association, then and now with comparison information and statistics, how we are marking our 30th year and the challenges set. Look out, too, for our pearls of wisdom.

Volunteers behind the scenes

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MND research – finding an MND specific fingerprint

30th anniversary

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What would we do with the help and support of our ‘back room boys and girls’? Thumb Print takes a closer look at how many of our volunteers are happy to ‘muck in’ on a regular but casual basis rather than take on the formality of becoming a committee member.

28 Attention all walkers! Ashley Morgan lays down her 30th anniversary Walk to d’Feet* MND challenge – shortest walk, biggest challenge.

30 Fundraising Highlights from our first ever Firewalk Challenge supported by television presenter Natalie Pinkham who lost a friend to MND.

32 Down your way Read about the exciting and creative fundraising activities taking place around the country.

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Front cover photo: Sarah Ezekiel, who has MND, with her daughter Aviva. Sarah is featured in the new awareness film Sarah’s Story. Full story on page 8. *WALK TO D’FEET is a Trademark of the ALS Association and is used with permission. All rights reserved.


Chief Executive

Diary Dates 2009

Spring Conference* Bexleyheath 10 May Chester 17 May

Edinburgh Marathon++ Edinburgh 31 May

Marking our 30th anniversary

H&SCP conference* Birmingham 16 June

MND Week Nationwide 20-28 June

10K British Road Race++ London 12 July

Machu Picchu Trek challenge++ Peru 3-12 September

am privileged to work for an organisation that is so passionate and serious about serving people with motor neurone disease. My inspiration in playing my own part in this comes from people living with MND themselves, who really do show the rest of us how to live, and from our volunteers – the lifeblood of the MND Association..

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Annual conference & AGM* Heathrow, London 12 September

London to Paris cycle challenge++ London and Paris 18 - 21 September Great North Run++ Newcastle 20 September

MND Association 30th Anniversary 6 October

Royal Parks Foundation Half Marathon++

It was a handful of people who had been touched by MND who decided to come together to see how they could make things better for the thousands of other people living with MND in England, Wales and Northern Ireland. These first volunteers, gathering in a bungalow in the East Midlands in 1979, may not have realised that their energy and dedication would lead to the establishment of a multimillion pound charity that touches the lives of all 5,000 people living with MND, and also supports those who care for them. This year we mark our 30th birthday – and the dedication and commitment of our volunteers is still the thing that makes the difference.

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www.mndassociation.org

Thumb Print is the quarterly magazine of the Motor Neurone Disease Association. The Editor is always interested in your comments and welcomes potential contributions for future issues. Material may have to be edited prior to publication. Potential advertisers should contact the Editor for a ratecard. Please write to The Editor, Thumb Print, MND Association, PO Box 246, Northampton, NN1 2PR or telephone 01604 250505. Fax 01604 611858. Email editor@mndassociation.org The views expressed in Thumb Print are not necessarily those of the Association. The products and services advertised or promoted should not be taken as recommendations by the Association, who cannot be held responsible should any complaint arise.

Dr Kirstine Knox Chief Executive

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* Enquiries contact the conference team on 01604 611845 ++ Enquiries contact the fundraising team on 01604 611860

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Berlin 8-10 December

We will be marking this milestone (see page 17), focusing on how far we’ve come over the past three decades, and at what we still have to do. We have made a difference to the experience people with MND have of care and support, directly from us and from others. However, the disease itself doesn’t change, nor does its ability to devastate families. That’s why research is also a priority for us, and why I am delighted that science has uncovered yet another genetic cause of MND (see page 21). Uncovering what lies behind MND is a key jigsaw piece that will lead us eventually to an effective treatment for this disease. That handful of volunteers who began the Association, and all those who have lived with MND since, deserve nothing less.

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20th International Symposium on ALS/MND*

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News Feature

We’ve got a new look! pring is traditionally a time for renewal, and this spring has seen the MND Association take on a new look.

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Our eagle-eyed members will no doubt have already spotted our new logo, which was launched to the outside world in February. This new logo replaces our old ‘block’ logo, which featured the words Motor Neurone Disease Association in capital letters, in a square. The new logo, which emerged as the result of several months of consultation with people with MND and their carers, volunteers, staff and external audiences, is based on the idea of disconnection and connection. MND disconnects people from their own bodies and their lives. We reconnect people – with friends and family, with their quality of life, and one day, through research, by eradicating the disease. The logo will be rolled out across our communications materials gradually, commencing this spring. It is Car sticker

Memo block

Donna Cresswell, director of communications, says the new branding clearly reflects who we are and what we stands for. THU

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New design style for publications Strategic Framework shown

accompanied by a new ‘look and feel’ to our printed and online materials, including new vibrant colours and typefaces. These combine to help us present a consistent, modern and high quality face to the wider world.

“The aim of changing our visual identity is to build further trust in the Association and reflect our position as a passionate, innovative organisation offering certainty and hope to people affected by MND.

Meanwhile, the ‘thumbs up’ symbol, which is an important part of our heritage, has been redrawn to show a softer and more ‘human’ thumb. We will continue to use this on many of our materials, especially those that are produced for people with MND, as we know that this symbol represents our positivity and hope.

“We have grown from a small organisation run by a handful of dedicated volunteers to a multi-million pound charity. The new branding represents this growth and will help us stand out in an increasingly crowded charity market.”


News Feature

News in brief

Polar Trek Intrepid explorer Christina Franco is aiming to raise £30,000 by completing the first successful solo expedition to the North Pole in memory of her father who died from MND. Christina, 42, started the trek in March from Canada’s uninhabited Ward Hut Island and expects to reach the Pole 60 days – and 480 miles – later. She will be travelling on foot, pulling a sledge of supplies behind her – including her laptop so she can send regular blogs.

Members of our communications team launch the new visual identity to the media

Only a handful of men have ever walked to the North Pole unassisted, and if Christina succeeds she will have earned a place in history and met one of the few remaining challenges of exploration left for women. Christina hopes the trek will raise money to fund research into MND, as well as two other charities, Save the Rhino and The Wilderness Leadership School. Check out her progress and sponsor her through her website: www.christinafranco.com

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Amazing gifts

More information: If you would like to talk to us about the new visual identity please contact the publications and website team, on 01604 611841 or 611877. To request artwork and guidelines for using the new logo in your own publications please contact Jenny Saunders, on 01604 611839 or email jennifer.saunders@mndassociation.org

Communicating our work, a leaflet sharing the guiding principles of the new look, is available as a helpful download from our website, visit www.mndassociation.org/logo

Gloucester Branch has been busy fundraising. Trustee Jean Waters’ annual coffee morning raised over £3,000. Our picture shows Annie Walters (right) giving Jean a cheque for £500 that she received from Andrew Lloyd Webber. Annie also tells us that her partner gave her an early Christmas present of £1,000 to the Association. This came on the back of even more good news that a family trust foundation donated £100,000 following a talk by chief executive Kirstine Knox.

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Chairman’s Column

Celebrating campaign award win e have received an award for our successful Research Foundation campaign which secured multi-million pound Government funding for MND research.

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very day there seems to be a new story about the recession and how it is affecting all of our lives. I know that many of you are concerned not only about how you will manage personally if things continue to worsen, or about how you are managing now, but also about the present and potential future impact on the Association of the economic downturn.

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As we are a charity that depends almost entirely on voluntary donations to fund our core activities, the board of trustees is, of course, monitoring the economic situation very closely. Thanks to sound financial management by the chief executive and directors, the financial position of the Association is currently very healthy. We have substantial reserves, and our overall level of current income is being maintained at budgeted levels. This will ensure that our ability to continue to provide existing levels of service to those with MND should not be affected in the short or medium term. However, we cannot be complacent, and the board and directors’ team continue to monitor the position very closely. Contingency plans have been developed which could be implemented if required. At the moment, however, there are no signs that this will become necessary. THU

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Of course, the uncertainty means that our need for funds is as critical as ever, and I would therefore like to offer my gratitude to everyone who contributes to our income-raising activities – volunteers, individual donors and fundraisers. Without you, we could not continue to deliver our services to those people with MND. This is but one illustration of why having the right trustees to govern the Association is critical to the charity. You will see the official AGM notice with this edition of Thumb Print. This is your opportunity to nominate yourself for election as a potential trustee, or to submit any resolutions upon which you would like the membership to vote at the AGM in September.

Our Research Foundation campaign won in the campaigning and public affairs category of the 2009 Science Communication awards, organised by the Association of Medical Research Charities (AMRC). We are a member of the AMRC. The awards are held every two years and are designed to celebrate AMRC members’ excellence in communicating science and to recognise and reward best practice in science communication. The judges commended our Research Foundation’s clear objectives and direct approach, which is great praise for a campaign that involved so many people connected to the Association. It was a hard-fought category, which saw us nominated alongside Breakthrough Breast Cancer and the Prostate Cancer Research Foundation. The Research Foundation We set up the Research Foundation in 2006 with the aim of raising £15 million for MND research. We put together a business case and lobbied in Parliament for half of this funding to be provided by

the Government. We were delighted when, in 2007, this was secured through the setting up of a funding partnership with the Medical Research Council. Kirstine Knox, our chief executive, says: “The Research Foundation campaign was inspired by our vision of a world free of MND and by people with MND themselves, who we know from our membership survey place a high priority on research. “I would like to pay tribute to everyone affected by MND who played a key role in our campaign. Hundreds of people affected by the disease wrote to the then Prime Minister Tony Blair to press our case for funding and these letters had a tremendous impact.” What the judges said The judges praised our Research Foundation campaign for: “a clear presentation of what’s the problem, what can be done about it, a business case for doing so wrapped up with the emotional case.” In the words of one of the judges: “When I have £100,000 to give away, the MND Association would get it for that sort of direct approach.” The manner in which we garnered support for our campaign was also singled out for praise as well as our ‘sophisticated lobbying’.

Celebrity news TV presenter Natalie Pinkham joined 43 fundraisers to conquer the coals at our first ever Firewalk Challenge. Natalie was inspired to give her support by the loss of her close friend, rugby star Jarrod Cunningham to MND in 2007. The event raised over £7,000 and was so successful there will be a second Firewalk in the autumn (read more on page30). As if the Le Mans 24 Hours wasn’t enough of a challenge, racing driver Darren Turner is taking on another of the world’s toughest endurance races this year - the London Marathon. Darren, who is a two-time Le Mans winner with Aston Martin in the GT1 class, is joining our team of fundraising runners on 26 April.


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During his time as president he led a brilliant campaign to secure £7.5 million of Government funding for MND research. In addition, his televised question about MND in the House of Commons inspired our first £1 million donation. Lembit said: “My time as president and then chair of patrons of the MND Association, has been very special to me. I feel I have achieved what I set out to achieve, which is to secure additional money for research. In doing so I paid tribute to my father and all those with this devastating disease. “I believe we are now one step closer to getting rid of MND for ever. It’s always difficult to know when is the best time to move on, and there’s always a temptation to hang around indefinitely. “But I believe that I leave the Association with the momentum to deliver a cure, and that, ultimately has been my ambition. I hope that the MND Association will remember my contribution kindly.” Lembit has undoubtedly made a huge contribution to our work and been a true inspiration to many of us.

Running a road race will be a whole new experience for Darren, who said: “I’m going to treat this like Le Mans, take it steady and be there at the finish. I just hope it doesn’t take me 24 hours!” Former EastEnders and Dr Who star Tracy-Ann Oberman hosted a ‘Generation Game’ fundraising event for the Association in London recently. Tracy Ann is pictured with the guest of honour for the evening, Sarah Ezekiel, who is living with MND.

recent parliamentary debate focused on the importance of making non-invasive ventilation (NIV) available to all people living with MND where appropriate.

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Clinical research has shown that NIV significantly improves quality of life and length of survival in people with MND. In a randomised controlled trial NIV was proven to extend life by seven months while riluzole, the only available treatment for MND, extends life by just three months. NIV can also have a dramatic impact on people’s quality of life by increasing blood oxygen levels. This leads to significantly improved sleep, fewer headaches and increased appetite. However, this vital treatment is not currently available to everyone. In January 2006 we suggested NIV to the National Institute for Health and Clinical Excellence (NICE) to produce guidance for the NHS. This means everyone with MND, where suitable, should get access to NIV. Following the latest announcement by NICE that the guidance will not be published until 2011, Mark Todd MP and chair of the All-Party Parliamentary Group on MND secured a parliamentary debate on the issue. He began the debate by outlining how important it is for NICE to speed up its recommendation of NIV as a treatment for people with MND. Cross-party MPs then spoke about the provision within their own constituencies and all agreed it was vital for NICE to issue its guidelines as soon as possible. Dr Julian Lewis, MP for New Forest East, spoke about the excellent service provided to people with MND in his constituency and the difference it had made to people’s lives. However service across the country is patchy. Lembit Öpik MP highlighted the lack of provision within his own constituency of Montgomeryshire. Mike Penning MP called the situation a ‘nobrainer’ for NICE. He concluded that there is clearly a need for this treatment, it has been clinically proven to work and the provision is currently patchy - exactly the type of situation NICE should be getting involved in. Health Minister Dawn Primarolo said that she deeply regretted the delays. She said the Government will be talking to NICE as a matter of urgency to produce the clinical guidelines. We also want NICE to start work on NIV immediately so that people currently living with MND can access this life improving and lifeextending treatment.

Stem cell research breakthrough At the beginning of March, British and Canadian scientists announced a breakthrough in creating induced pluripotent stem cells (known as iPS cells) from human skin cells without the use of viruses. iPS cells are adult cells, often skin cells, that have been reprogrammed to resemble embryonic stem cells. What are embryonic stem cells? Embryonic stem cells are the building blocks of our bodies as they have the potential to turn into all types of human tissue. Human stem cell-like cells are useful for research into MND as these cells offer us a potential source of human motor neurones for research. Scientists have previously demonstrated that they can create iPS cells. The procedure they used, however, involved injecting the adult cells with viruses in order to re-programme the adult cell. The injected viruses modified the cells in such a way that they had the potential to become cancerous. Consequently, the iPS cells would not be suitable to help treat patients with MND. Technique breakthrough This research, co-led by Sir Ian Wilmut at the MRC Centre for Regenerative Medicine at Edinburgh University, is a breakthrough as the technique does not involve injecting the adult cells with viruses. Instead the scientists applied a method which involves applying a temporary electric shock to the cells. What this means for people with MND Using iPS cells, which have been created in this way, to treat MND is a number of years away. This is because rigorous testing will be needed to ensure that this technique is safe for patients. The scientists leading the research have stressed that more work is needed before iPS cells can begin clinical P R I N T trials. B

Lembit, whose father died from MND in 2005, worked tirelessly for people with MND for more than three years, firstly as our president and then latterly as chair of patrons.

Parliamentary debate on non-invasive ventilation

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Lembit Öpik has stepped down as one of our patrons.

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Lembit steps down

Media coverage Speaking on the BBC Radio 4 Today programme on 2 March, Sir Ian Wilmut spoke extensively about his research and the impact it could have on people living with MND in the future. This was a significant breakthrough for MND awareness-raising as other news programmes reporting on this research used other diseases and neurological conditions to illustrate how this research can benefit patients in the future. More information www.mndassociation.org/research/research_ explained/news_in_research See ‘Breakthrough in the creation of iPS cells’.

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Sarah’s Story

Sarah’s Story

‘Sarah’s Story’, our new awareness-raising advert, was shown on almost 100 cinema screens across England and Wales in February.

arah’s Story, our new awarenessraising advert, was shown on almost 100 cinema screens across England and Wales in February.

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Sarah’s Story will be our new awareness-raising campaign of the same name which we will roll out during 2009. Our 90-second advert features Sarah Ezekiel who is living with MND and after whom the campaign has been named. It is intended to convey the emotional and physical impact of receiving a diagnosis of MND. We know that public awareness of the disease is at a low level. Therefore, Sarah’s Story is targeted at people who have little or no knowledge of MND and aims to create a ‘first stage’ of awareness, so that people at least know that MND is a devastating disease. Consequently, we know that its hardhitting style is likely to shock some audiences.

Over 60 cinemas – nearly 100 cinema screens Throughout two weeks in February, Sarah’s Story, which has a 15 certificate, was shown at nearly 100 cinema screens across England and Wales. This was made possible through the kind support of Pearl and Dean who offered us this free advertising space.

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A scene from Sarah’s Story

Debate As you can imagine, Sarah’s Story has generated much debate. It has also stimulated viewers to find out more about MND and how they can help us fight back.

“The film has received a large number of positive comments from people with MND...”

The film has received a large number of positive comments from people with MND on the PatientsLikeMe forum. Discussion on the UK-based forum, Build, and the BBC message board, Ouch, have reflected views on both sides of the debate. Steve Skerret, was diagnosed with the disease in April last year. He says:

“They’ve got it bang on. It not only explains the physical aspects but how you feel emotionally. Being diagnosed is like being assaulted and the film really explains what it’s like to be diagnosed with this disease. It’s a really powerful piece of film. Me and my wife feel empowered by it.” Mark Carr was diagnosed with MND in May 2006. Although he is broadly supportive of Sarah’s Story he does have some concerns. “It does a very good job of grabbing people’s attention and if it wants to get people talking then it will do the job. “It does leave questions to be answered though and I really hope people will find out more, especially those who are newly diagnosed and will look on the Association’s website to see just what support there is.” Kirstine Knox, our chief executive, explains: “As an organisation we exist to fight for people with MND. We serve people with MND, we push for care and we push for research. We need to tell the world about MND and Sarah’s Story helps us to do this.”

Alan Graham, our chairman, said that in the commercial market, the film would have cost over £1 million to produce. He added: “Sarah’s Story was only made possible by the kind support of Sarah Ezekiel and a number of individuals and companies within the advertising and film industries, all of whom provided their time, expertise, and resources, free of charge.”

What’s next? We may be able to receive another period of free cinema screenings. We are also working hard to secure free advertising space on TV. We will keep you updated. Sarah’s Story is now on YouTube for people to view at www.sarahsstory.org.uk. The response so far has been incredible. As we went to press, Sarah’s Story has been viewed nearly 12,000 times. Sarah’s Story will run throughout 2009 and we will let you know how you can get involved as our campaign develops.


Sarah’s Story

What our trustees think Jean Waters became a trustee of the MND Association in September 2006. Jean acted as an adviser at the Sarah’s Story film shoot.

Jean Waters

“At first sight, the trustees felt the plan for the film didn’t represent MND. Much discussion and correspondence with the producers occurred, with modifications which reduced our concerns. “After meeting the team who had conceived and planned the idea, we were impressed by their understanding of MND and planned portrayal of its emotional and physical effects condensed into 90 seconds. The whole board of trustees saw the first draft and gave support to take it to the finish. “It isn’t an easy film to watch, but then neither is MND. Sarah’s Story is a powerful piece which could have a huge impact on awareness and as people with MND have said, ‘tells it how it is’!”

The ‘real’ Sarah Sarah’s Story tells the story of a young woman who is suddenly ‘attacked’ by MND. An actress plays the part of Sarah and as her body deteriorates, illustrating the muscle-wasting effects of MND, the actress’s head is superimposed on the body of Sarah Ezekiel.

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“I was 34 and seven months pregnant with my second child when I was diagnosed. I felt absolutely terrified.

“I agreed to be involved because I really feel the public needs to know about MND.”

“I can really identify with the film. The horror and turmoil of my diagnosis and changes to my body are so accurately represented. The film is shocking but MND is shocking.

Sarah Ezekiel and her mother, Gazala

“I agreed to be involved because I really feel the public needs to know about MND. I didn’t know anything about the disease

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Sarah Ezekiel was diagnosed with MND in April 2000. As the disease has progressed, she has lost the use of her limbs and the power of her speech.

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Alan Graham, chairman of board of trustees, Helen Hadfield and Jim Weedon of Bare Films, Kirstine Knox, our chief executive and Sarah Ezekiel

when I was diagnosed and neither did my family and friends. I believe that if more people are aware of MND and its devastating effects then we will be nearer to finding a cure.” Shireen Cohen is delighted her friend Sarah is involved. She says: “Too many people are unaware of what MND is and the affect it has on sufferers as well as their families. I feel this film will work wonders to raise awareness of MND because its impact is so great.”

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Carers’ Pack

“For a long time I felt there was very little I could do to fight MND, it dictated my life and was continually in my thoughts!

News in brief

“However, since getting more involved with the work of the Association I feel I am in more control, by helping others I am making their lives easier and making even that small difference is very satisfying. I only regret that I don’t have the time to be more involved.” Arthur Newell, who is living with MND.

“Caring for someone is not easy but it’s made so much harder by the need to fight for help and support. Spending time fighting for help, meant I wasn’t spending precious time with my partner.”

Air Commodore Alex Deytrikh 1957–2009 It is with great sadness that we report the death of Alex Deytrikh who died at his home on 25 March. Alex was diagnosed with MND in July 2007 and worked hard to raise awareness and funds for the Association. Photographs of Alex, taken by his daughter Laura were featured in the last edition of Thumb Print. Alex and his wife Carol, shown on the next page, also appear on the front cover of the strategic review and other awareness materials. I had the pleasure of meeting Alex when RAF Wyton and the Ministry of Defence in Bristol held a fundraising dinner in his honour. The event raised over £12,000. Alex faced MND with great dignity and courage, and was an inspiration to many. Our thoughts and best wishes are with Alex’s family, in particular his wife, Carol and their three children during this very sad time. Kirstine Knox

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Former carer, Don Francis

Carers’ Pack e are dedicated to supporting carers and families of people living with MND throughout the time they are caring and when their caring role comes to an end.

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This happens in many ways, including sharing information via MND Connect, our website, this magazine and our volunteers’ newsletter The News.

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Spirometer gift The SE Wales Branch presented a cheque for £470 at the MND Clinic in Pontypool. The money was presented to consultant neurologist Dr Ken Dawson, to buy a Spirometer, which measures breathing capacity. Dr Dawson runs an MND clinic once a month in Pontypool in addition to the clinics he has at Nevill Hall, Abergavenny. He is supported by Sue Broad a specialist MND nurse.

● New to caring ● Your rights to – includes Carers’ Assessments ● The emotional impact of caring – ‘looking after you’

We are also regularly consulted on policy affecting carers by the Government and work closely with many other organisations including Carers UK, Help the Hospices, Crossroads for Carers, The National Council for Palliative Care and the Princess Royal Trust for Carers.

● Money, benefit entitlement and debt

This year, to strengthen this support further, we will be developing a comprehensive new carers’ pack.

● Carers at the heart of the 21st century – key elements of the Government’s 10-year vision for the future of care

We know that you are the experts and, for this reason, we are inviting you to help shape the carers’ pack by sharing your ideas about the sort of information you would like to see included.

● Personalisation – includes direct payments and personal/individual budgets

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We’ve already drawn up a list of some things that we think could be included in the pack, these include:

Sharon Schillerstrom, care information manager said: “We are eager for those affected by MND, particularly carers, to help us shape our new carers’ pack. “We know caring is extremely demanding, which is why we are offering lots of different ways for people to get involved. This could involve writing to us, contacting us by phone, fax or email, meeting face-toface, or even by attending a focus group.” The carers’ pack is also the focus of one of the sessions at our spring conferences, currently taking place across the country.

● Practical help and support – includes how to access advice, support and information us and external organisations ie Carers Direct ● Employment, education and training

● Signposting – other organisations and what they can offer ● National policy affecting carers ● When caring ends.

“We know that you are the experts and, for this reason, we are inviting you to help shape the carers’ pack...”


Carers’ Pack

“There are many ways you can get involved in this important and exciting project, at different levels to suit you.”

Get in touch If you would like to get involved, or just want to find out more, please contact Sharon Schillerstrom, on 01604 611885, email sharon.schillerstrom@mndassociation.org

Useful contacts: MND Connect: 08457 626262 or mndconnect@mndassociation.org Our website: www.mndassociation.org/carers

What would you like to see included? Now we are calling on you to share your personal experiences and ideas. This could include: ● What are the issues that have affected you in your caring role? ● What advice, support and information has been really helpful in your role? ● What could have been better? ● What tips and advice would you like to share with other carers?

There are many ways you can get involved in this important and exciting project, at different levels to suit you. For example you could share your experiences with us by: ● Giving examples of how you are coping or how you coped in the past ● Letting us know what support you have or had ● Telling us what worked well for you or what didn’t work so well ● Becoming a case study. This might include giving your views on a range of carer related issues to members of the media.

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Carers UK (England) Telephone: 0207490 8818 Email: info@carersuk.org Website: www.carersuk.org

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Carers UK (Northern Ireland) Telephone: 028 9043 9843 Email: info@carersni.org Website: www.carersni.org Carers UK (Wales) Telephone: 029 2081 1370 Email: info@carerswales.org Website: www.carerswales.org The Government strategy: Carers at the heart of the 21st century www.dh.gov.uk/en/publicationsandstatistics/publications/ publicationspolicyandguidance/DH_085345

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Living with MND

Here, in what has become a regular series of personal contributions, our readers share their stories of living with MND.

Telling it as it is The Reality of Living with MND

Living on the edge A Christian perspective of MND by Anne Corfield

recent contributor to Thumb Print described living with MND as living on the edge. I suppose that, to some extent, all people could consider themselves to be living on the edge, since none of us knows what each day will bring. As someone living with MND however, the edge is much more noticeable. I would like to share with you my experience of edge-living and of the abundant blessings which God has bestowed on me, because of it.

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I was diagnosed with bulbar onset MND in April 2008 and up until that point I had had very few worries. I have a wonderful husband and we were due to celebrate our Silver Wedding in August 2008. Our children were both doing well at university and I had a job I loved as a primary school teacher, which I thought would take me happily to retirement some 15 years hence. Since my diagnosis, however, I have had to give up work, I have lost strength in my hands and arms and my life expectancy is suddenly so much less. It would have been very easy in these circumstances to curl up in a corner and cry, but although there have been some bad days; this is the last thing I want to do. Crying will not take away my illness and it will only spoil the time that I have with my family and friends. I can honestly say that I have never once asked, ‘Why me?’ Instead I think of what my grandad, a man of great faith, once said to me: “Good things always come out of difficult situations.” How right he was! I have always been a person, who has

counted her blessings, and now they seem to be everywhere. Now I am not working, I have much more time to spend with my husband. I spend lots of time with my parents; time I never expected to have. I have met so many wonderful health care professionals and volunteers – people with tact, understanding, compassion and kindness. I have renewed friendships with people from my past and been blessed

with new friendships. I have had letters of support from complete strangers and, thanks to the kindness of their current teacher, have maintained contact with the class I had to leave mid-year. Today, I watched a tiny wren hopping around the garden, and laughed at a blackbird taking a bath in the pond. And above all this has been the tremendous increase in my faith. I know, beyond doubt, that if it were God’s will, He would cure me, and that if He doesn’t cure me; it is because He has something else in mind for me. Every day I ask God to speak to me and He always does. Something I read, or something somebody says, or something I see answers whatever is in my mind that day. I have no fears for the future, because God has me and my loved ones in His care. When you are living on the edge, every day is precious, every sunset more spectacular, every flower more beautiful and every person more loving. God is indeed good.

“I suppose that, to some extent, all people could consider themselves to be living on the edge... As someone living with MND however, the edge is much more noticeable.” Steve and Anne Corfield cut the cake at their Silver Wedding celebrations


Living with MND

My house is an Argos catalogue

Now for the shopping mistakes…

Neil Platt was only 34 when he was diagnosed with MND February 2008. Both his father and grandfather died of the same disease. Here his wife Louise talks about some of the items they have bought to make daily life more manageable – most of them bought from Argos! To read more check out their blog – www.plattitude.co.uk

New bed: A waste of money as soon we had to have a bed that could fit a hoist, and then a profiling hospital bed. Gym equipment: We bought an air walker and an exercise bike, both of which were on eBay within a couple of months. Coccyx cushion: Did nothing to relieve any pain. Massage chair: Again, nothing. Office chair: It was only used for a couple of weeks before Neil needed a recliner chair. The swiveling action was a hazard too. During the production of this issue we heard the sad news that Neil died at St Michael’s hospice on 26 February and leaves his wife Louise and one year old Oscar.

Neil and Louise Platt with their one-year-old son Oscar

Camel pack: Easier to carry a drink around in with a wheelchair. Sound asleep pillow: Plays MP3 through the pillow so nobody else can hear. Bean-bag tray: More stable than a normal tray. Coloured towels: With three different people trying to keep on top of the laundry you need a system. Coloured wash cloths: They work up the body with a bed bath and you kind of want to know it’s a different one by the time they get to your face! Two-way radios: We used these a lot till Neil could no longer press the call button. Second baby monitor: We used one for our son Oscar and bought a second one for Neil. Peace of mind is vital in this situation.

My story

Folding door: When you’re using a standing hoist to manoeuvre your husband on and off the toilet avoid the problem of the door getting in the way with an Argos folding door! One of our best buys! Doorbell with twin bell: After a couple of incidents where no one could hear me shouting for help over CBeebies I rigged up a doorbell that I could ring from the bedroom. Mine has two bells to one button so if I press it, it can be heard in both the kitchen and the lounge. Last but by far one of the best… the Nintendo Wii. I think this should be given to every one who is sick! If I’d known how much fun it would put back into our lives, I would have got one earlier. It means we can have friends round and still have a ‘bowling night’ and play ‘golf’. Neil can still ‘drive’ his Super Mario Cart when he can no longer drive.

Young Amy Spiers writes movingly about how MND claimed the life of her lovely grandmother y grandma used to work full time. She was very active and at 71 seemed very healthy. Then she started to fall over a lot. She thought it was just old age, but one day she lost the movement in her hand. She was scared and went to hospital. I was told that she had MND but I didn’t understand it.

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I was very upset, as she had brought me up since I was little. Every day I watched her get worse. She had a bell to ring if she needed anything. I would hear her crying and screaming. It broke my heart to hear it and I’m ashamed to say that I tried to avoid going into her room. The way I watched her die was soul-destroying. She was so brave when she first got diagnosed, saying how other people had it worse than her and she felt for them. I wish they could find a cure for MND so no one else has to suffer like she did.

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Loo seat raiser: Social services couldn’t seem to find one that fit our toilet… we found one at Argos.

Our thoughts and prayers are with the family.

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Good money spent…

Voice recognition software and stand alone microphone: Not as expensive as you “Loo seat raiser: might think and Social services invaluable to Neil. Combined with the baby couldn’t seem to monitor it means he can find one that fit our be in a room by himself and write his thoughts. toilet… we found He no longer has to one at Argos.” dictate to someone and it gives him a modicum of freedom back. The software comes with a headset to speak in to which he couldn’t use with the ventilator mask so eventually we thought to get the separate microphone.

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ND can move so fast that services find it difficult to keep up with providing equipment. It’s not only tempting but often necessary to just spend money to solve problems. So I wanted to show our list of good money spent versus bad. We also bought a lot of things that I consider to be creative solutions to our problems so I hope others find our experience useful.

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Neil and Louise did a lot of work with us to raise awareness of the effects of MND. Neil and Louise appeared in The Yorkshire Post, ITV Calendar and BBC Look North twice and the Daily Mail. Neil was interviewed by The Guardian and his mum was interviewed in Full House magazine – neither of which have been published yet. Neil’s justgiving page has so far raised £5,500 for the Association and continues to increase.

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Living with MND

Our faith didn’t waver Mel Barnes writes movingly of his wife Joy’s diagnosis and of his selfless struggle to care for her before she died.

riday 14 March 2003. A day etched in my memory – windy, slightly overcast but dry. We parked at St Boniface Down, the highest point on the Isle of Wight and set off at our usual brisk pace. We’d only gone 100 yards or so when Joy stopped. She said she wasn’t walking properly and wanted to return to the car. I remember being immediately alarmed, because we had always walked miles and she had no recent injury.

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Over the next few weeks, it appeared that her right foot tended to drop. Our GP thought it was possible related to a fall down the stairs about a year before. The chiropodist supplied a foot support but it was no use. Next, we went to a physiotherapist and again were assured there was no major problem, certainly nothing that a few sessions wouldn’t sort. Joy was also doing hundreds of exercises at home. From experience of tennis injuries over the years and resulting physiotherapy, I knew Joy had a major problem. Her muscles weren’t getting stronger. On the pretext of going to the GP myself (partly true) I asked him whether he had considered MND. He hadn’t. But when I told him that two of her uncles had died from the disease he immediately set the ball rolling for a visit to a specialist at the Wessex Neurological Centre, Chandlers Ford.

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At this appointment MND couldn’t be ruled out and Joy had to spend five days in Southampton Neurological Hospital for further tests. At the end of her stay we were both called into a room where the consultant and several senior medical staff were gathered. Our worst fears were confirmed. I saw Joy’s lips quiver but she was very calm. It was me who cried. Afterwards we both said that we had suspected MND but had not wanted to alarm each other. The local MND representative called regularly and was very helpful. We continued exercises at home and tried to behave as normally as possible. Joy even continued to drive her car until one day she came home in a state of shock – she had come up to a junction and couldn’t brake as her foot wouldn’t move. Fortunately there was no accident. That was just one event in the downward spiral. Another was the realisation that she could no longer play the piano. Then there

were the falls – I recorded at least 30 but will just mention two. I returned one day to find her with cuts and grazes on her knees and hands – it had started to rain and she had tried to run to get the washing in. The other sounds funny now. I was just getting into the bath and there was a crash and I knew she had another fall. I rushed downstairs without a stitch on – fortunately there were no visitors! Every time she reached one of these downward steps or had a fall it hurt me because I loved her so much. Each time I tried to devise a way round a problem there was another and I was running faster and faster to stay still. “Eventually I was Getting up from sitting or laying position was doing absolutely more and more everything for her difficult. We had to as her limbs had have a raised bed, become useless.” higher seated toilet, chair and car. An access platform was made to enable me to get the wheelchair indoors. Eventually I was doing absolutely everything for her as her limbs had become useless. I was virtually on duty 24 hours a day and my weight had gone from

Mel Barnes with his wife Joy who died of MND aged 58

11st 5lb to 9st 11lb. But this is not about me seeking sympathy – what I did was done willingly and lovingly. I just wanted to help her as much as I possibly could. We looked into respite care, but on the one hand I didn’t want to leave her and on the other staff from the caring agencies weren’t allowed to lift her so I couldn’t leave her. Fortunately we were both Christians and Joy’s faith didn’t waiver one bit. With the Lord’s help I managed to continue to look after her until 20 July 2004. On that morning after a great struggle I got her into the bathroom but she was like a rag doll. I couldn’t hold her up so gently let her down on the floor. I rang the emergency services and the paramedics were marvellous. They lifted her and put her back to bed. They looked at me and told me that I couldn’t go on looking after her, that arrangements would be made to take her to the hospice. It was typical of Joy that when she got there, she insisted in her weak voice that I went home to get some rest. I left her at about 5.30pm and got to bed at 7.30pm. An hour later I woke to hear the phone ringing. It was the hospice nurse telling me to come quickly as there had been a sudden deterioration. I drove like a madman, breaking many speed limits. The nursing sister in charge met me at the door. She shook her head. I was just too late. A few minutes earlier she had passed away, only six hours after admittance. She died almost exactly 16 months after that windy day on St Boniface Down.


Living with MND

Barrie’s latest offering I would like to say how much I enjoyed reading the latest (Autumn) issue of Thumb Print. I was at the annual conference and there was such a tremendous amount of ‘things’ going on...but you managed to cover the whole event...which was excellent. I found some of the other articles were very informative and interesting. Keep up the good work. I thought I would also send you my latest poem...which I did shortly after getting my new ‘toy’, a power chair…

My New Power Chair (The Mean Machine) I’ve got a new power chair as you can see It does 4 mph just the right speed for me. The batteries will last up to 18 miles But I’m not trying that.... I say with a smile. It has given me a lot more independence that’s for sure So now I am able to get out n’ about a little bit more. I was a little nervous at first of people on the path Sometimes I ended up going on the grass. I now see people that I haven’t seen for a while And they shake my hand and give me smile. I haven’t seen you for ages, “how have you been?” “Stuck in the house”... until I got this “Mean Machine”

We arranged a family holiday for October that year and all had a fantastic time. We also brought our wedding forward and my mum and me had so much fun organising it together. My wedding day was the happiest day of my life. My mum looked amazing – although by this point she was struggling to walk and her speech was slightly slurred. She was determined to walk down the aisle with help of the ushers and even got up for the first dance with my dad, which brought a tear to everyone’s eye. Sadly after the wedding, her symptoms got worse. By Christmas she could no longer walk, her speech had became extremely slurred and she was

struggling to eat. We celebrated her 55th birthday in February 2008. Then she took a turn for the worse and tragically died two weeks later.

Now Meggie our little pet dog wants a go She sits on my knee and we start off real slow. She looks up at me... as if to say Up it a gear or we’ll be here all day.

My mum was a very proud and brave lady, she was always smiling and giving you the ‘thumbs up’ sign. Seeing what this disease did to her was horrific, and I can’t begin to imagine how she must have been feeling, but she always remained strong for the rest of us. She fought this disease with such courage and determination. I miss her so, so much.

Sadly the day is soon over and is almost done But it’s been really great and lots of fun. The machine is now on charge and put away Tomorrow is bound to be another busy day. PR

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y mum had been experiencing a dragging foot, several falls, and a broken hip. After several doctors’ appointments and tests, she was diagnosed in June 2006. After the initial few days of trying to come to terms with this news, we all pulled ourselves together and tried to be strong for one another.

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We went on a little trip with him stood on the back He did a wheelie but grandma said, “Ah none of that” As we bombed along... people would smile and stare Thinking.... those two don’t look safe riding that chair.

Barrie Butterton (October 2008)

“My wedding day was the happiest day of my life. My mum looked amazing – although by this point she was struggling to walk and her speech was slightly slurred...” Barrie with his little dog Maggie

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Louise Robinson cherished the final few months of her mum Jean Dixon’s life – even bringing forward her wedding so that she could enjoy the big day.

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Missing you, mum

My grandson Callum said, “Granddad let’s have a go” So I said,” ok but make sure you set off slow” He went off so fast, at such an alarming rate He only just managed to get through the gate.

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Living with MND

The love of our lives

Vic’s trip to Gracelands

Alan Crowdey writes movingly about his wife Jane’s determination to make the most of the time she had left.

opular school caretaker Vic Gearing is a huge Elvis fan. When he was diagnosed with MND, the children at his school in Lewes decided to raise enough money to send him on a trip to the King’s home, Gracelands in the USA.

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With local newspaper publicity and school discos the pupils and colleagues of Wallands School managed to raise over £5,500 for the trip and a benefactor donated £2,000 for a car and driver to be at Vic’s disposal during their stay.

Jane with her daughter Liz who had just completed running in the London Royal Parks Half Marathon

y darling wife Jane was only 56 when she heard the horrific news that she had MND. Not only were our lives to be changed forever but there was a sense of numbness as to what the future had in store. From the outset, as a committed Christian, Jane tried not to be fazed by her illness and remain positive. I can see her now, asking her consultant if she could go to Iceland, a place she had always wanted to visit. In

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“For what was to be Jane’s last year, both Liz and I gave our time to Jane’s needs. Jane never complained as this horrific illness began to take over her entire body.” May 2007 that’s where we went for a great holiday. We also made trips to see our son Paul and his family in Lincoln, and travelled to London and Paris. Jane and I spent our honeymoon in Paris in 1974 and this time our daughter Liz came with us.

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For what was to be Jane’s last year, both Liz and I gave our time to Jane’s needs. Jane never complained as this horrific illness began to take over her entire body. We enjoyed her last months to the full as much as we could. Our first granddaughter, Emily was born in July. In October we made our final trip to London, meeting up with our son Paul and his family to watch Liz take part in the first London Royal Parks Half Marathon. She raised over £2,000 for the MND Association.

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Alan and Jane on a visit to Iceland

Just over four weeks later Jane died – for her it meant no more suffering, but for us and our friends, it was the greatest loss. Jane was a teacher who loved the English language. The love of her life was to read, but this was sadly taken from her as the illness progressed. Jane was a beautiful, intelligent woman who, like all with this disease, left us far too early. She was, quite simply, the love of our lives.

Vic and his wife Paula photographed with Priscilla Presley (centre) outside Elvis’s home Gracelands in Memphis

Vic and his wife Paula had a fantastic time. With additional assistance from ‘Forever Elvis’ and the American ALS Association they toured Elvis’ mansion and were taken to rooms not normally open to the public. They even met Priscilla Presley, went to an exclusive birthday party in honour of Elvis and renewed their wedding vows in the chapel. “It was brilliant,” said Vic. “I heard Elvis playing all day long for all seven days. At the chapel they played Love me Tender, Hawaiin Wedding Song and other love songs and they let us have photographs taken at the front of Gracelands which isn’t usually allowed.”

A holiday of a lifetime…

If you would like to share your experiences on any aspect of living with MND, we would welcome your contributions for future publication in Thumb Print. Please note these articles are personal opinions and not necessarily those of the MND Association. Letters or written articles can be sent to the Editor at PO Box 246, Northampton NN1 2PR or emailed to editor@mndassociation.org


2009

marking our pearl anniversary

It’s our

This year is a very special year for us – 2009 marks the 30th anniversary since the Association was established by a group of volunteers. We will be marking the occasion with a number of activities from May through to November.

30th birthday

Middle row: Kathy Stephenson, Peggy Berrie, Malcolm Spencer, Jenny Elston, Anne Gretton. Front row: Janet McMillan, Jim Tew MBE, John Prince.

Thirty years ago few people had heard of MND and even fewer knew anything about it. Families were often left to cope alone, in

Today, some 30 years on, we have grown to a staff of 140 and volunteers remain our lifeblood.

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Back row: Peggy Betterton, Peter Cardy, Martin Anderson, Judy Kennedy, Joyce Prince.

Through their own heart-breaking personal experiences a number of volunteers formed a group to support people affected by MND.

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A nostalgic reunion took place at Farnsfield, Nottingham, where it all began 10 years earlier. Pictured are some of the original founders and officers of the National Executive Committee.

ignorance and isolation.

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10 years on…

hanks to the support of our dedicated volunteers we have come a long way since we were founded by a group of people determined to help those affected by the disease.

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2009

marking our pearl anniversary

How it all

We started off fighting and until a cure is found we will continue to fight for people with MND. We remain true to our original aims of support for people with MND and research for a cure. Together we will win the fight against this deadly disease.

began oday, there are around 5,000 people living with MND. Back in 1979 the same number were struggling to cope with the news of a terminal diagnosis alone.

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SUFFERERS Peggy Berrie wins the raffle at the 1983 AGM, which also shows Jenny Carus (now Elston), Martin Anderson, Roy Price the first director of the Association and Jan Wey one of the two first patient care officers

A range of early information leaflets produced

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May I ask any of your readers who suffer from motor neurone disease, or who are related to a sufferer of this condition, to write to me with a view to forming a patients’ association. – J. C. PRINCE, Ealing

Even to many neurologists MND was something of a mystery. With no funding there was very little research into MND and its causes. A group of very special people decided that something must be done to help those faced with this mysterious disease. A new era has begun. Determined to do something to help counter the isolation John Prince from London placed an appeal in the Evening Standard, asking people affected by MND to contact him with a view to forming a patients’ association. In June 1978 John and his wife Joyce held their first ever meeting at their home. Meanwhile in Nottingham, Roger Carus, a young father of two small children decided to speak out following the lack of information about the disease that was taking away his life.

Roger Carus with his wife Jenny and their children Paul and Melanie

Another founder member with MND, Paul Betterton also shared his own experience to raise awareness. London Weekend Television featured Paul. His mother Peggy recalls: “Paul knew he needed to raise funds – and being a TV star, even for a few minutes, gave him a big boost during a difficult time.” On what would become a historic day, the three groups decided to join forces and on the 6 October 1979, the MND Association was born. The 6 October is a very special day in our history. Therefore we are dedicating this day in 2009 to remember all the friends we have lost to this devastating disease.

He was interviewed by the Nottingham Evening Post and readers responded so positively that a preliminary meeting was arranged in February 1979. His wife Jenny Elston recalls: “When Roger was diagnosed, all he could find was one paragraph about MND at the library. That’s why he got the local paper to take up his story. “He knew he wasn’t alone and that there were hundreds of others out there feeling isolated and without even the most basic support. He knew his time was limited but he was determined to do what he could.”

Lady McNeil, our first president with Joyce Prince

Martin Anderson, our first treasurer, with Kate White our first employee (l981).

Sadly Roger died soon after that first national meeting – unaware of the role that he has played for people facing MND in the future. Now we move to Scunthorpe when Peggy Berrie contacted the Nottingham group. Peggy started her own support group in Humberside following the death of her husband Bill.

An insulated plate, cup or camping mug will keep food/drinks warm whilst you eat at your own pace


2009

marking our pearl anniversary

Then

and now last year MND Connect received over 10,000 enquiries.

Then

there were three groups in London, Nottingham and Huddersfield.

Now

in 1980 we funded our first research project at Charing Cross Hospital.

Now

95 branches and groups are supporting people living with MND across England, Wales and Northern Ireland.

Then Now

last year we spent over £2 million on research projects.

Then

member subscriptions were 50p for an individual, 75p a family.

in 1993 we opened our first care centre.

Now

there is no fee for people living with MND and their carers, spouses or partners. Individual membership is £12 and £18 for a family.

Now

Then

in the first year we raised about £20,000.

Now

last year we loaned over 1,700 vital pieces of equipment.

Then

in 1982, our first big research conference attracted 44 specialists in Birmingham.

Now

in 2008 our symposium returned to Birmingham and attracted over 800 delegates from as far as field as Tokyo, USA and Cuba!

Then

in 1982 our first two patient care officers were appointed.

Now

we have over 26 regional care development advisers (RCDAs) and over 350 association visitors (AVs).

Wipe on/wipe off boards can be a useful way of communicating if speech is limited or lost

HRH The Princess Royal, in her role as our royal patron will be opening our 17th care centre.

Then Now

today it’s around

£13 million. The Duchess of York and Lady Hallifax officially opening the first Care & Research Centre at Maudesley/King’s College Hospital

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our national office is based in Northampton, directly in the middle of the three founding groups. We employ 140 staff dedicated to improving the lives of people with MND.

in 1980 we loaned the first item of equipment – a riser recliner chair.

Our first two patient care officers

Now

“My conservatory was effectively the national office, with one manual typewriter and a telephone. Once people found out the Association existed the phone rarely stopped ringing and the correspondence became immense. We knew we had exposed a desperate need. I even had a call from an Australian patient, delighted to know that we worked a 24-hours shift.”

Then

The 2008 International Symposium on ALS/MND held in Birmingham

in 1990 we launched our

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The original and the current Northampton office

Then helpline.

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Then

The first national office was Ann Gretton, the association secretary’s conservatory. Ann remembers it being snowed under with paperwork in the early days.

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2009

marking our pearl anniversary

Some of the many faces of MND

Marking our

30th anniversary group of staff and volunteers are working together to come up with a number of activities to mark our 30th anniversary. Obviously it goes without saying that the people who have founded the organisation will take a very special place in the 30th birthday activities.

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30 faces of MND During October our website will feature 30 different faces of MND. Each person will be someone who was diagnosed with the disease over the last 30 years to represent each year of our existence.

Ashley Morgan – shortest walk

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Ashley Morgan, who is living with MND, has thrown down an unusual 30th birthday challenge. Find out more on pages 28/29.

Pearls of Wisdom Look out for our Pearls of Wisdom Use clothing with Velcro fastenings and elasticated sleeves

30th reception We will be holding a special reception to recognise the contribution of volunteers across our history. Look out for more details in the next edition of Thumb Print.

Day of remembrance On 6 October at 6pm we would like to have a period of remembrance for all those who have lost their lives to MND. This is something everyone can do and unites us in our fight to end this terrible disease. There will also be a number of other activities taking place to mark this special date in our history. We will be keeping you updated through Thumb Print and our website.

‘Touch’ lamps can be turned on and off with minimal dexterity and effort

As part of our 30th birthday activities we will be collecting pearls of wisdom – hints and tips that have made a difference to people’s lives over the last 30 years. We will be including them in each edition of Thumb Print this year. We know that so many of you have come up with innovative solutions to make life more comfortable. Between us we must have so much information that if shared could be another tool to help us fight this disease. So please help us by sending in any hints or tips that have helped you, as these may well be able to help others. If you have any, please send them to Jenny Saunders at MND Association, PO Box 246, Northampton NN1 2PR or email them to jennifer.saunders@mndassociation.org.

Over the coming editions of Thumb Print during our 30th year we will be featuring interviews with key people, the 30th birthday activities and looking to our future. Our summer edition will look at the developments made over the last 30 years in care, and in the autumn we will focus on research.

Have a baby alarm by the bed, so you can get assistance without having to get out of bed


News Extra

New MND gene identified

Taking part in MND research We know that there is frustration at the lack of research that people affected by MND can take part in and we are looking to change this.

research project involving Prof Christopher Shaw at King’s College London, has yielded an important breakthrough in MND research. The work was funded in part by the MND Association.

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We are starting to create a list of people with MND who are interested in taking part in research. Inclusion in this list is optional and does not guarantee that you will be included in future research projects. Your details will not be passed on to researchers. Our list however, will enable us to identify suitable participants if we are approached by approved researchers looking for specific people to take part in their work. If you are suitable, we will contact you with details of the study. The more names we have the better.

Working with MND researchers at Harvard University, USA, Prof Shaw’s team has found that mutations in a gene called FUS cause MND in some families affected by the rare, inherited (familial) form of the disease. Following up on a lead about mutations in FUS from the US researchers, Prof Shaw’s team confirmed that mutations were present in 4% of UK patients with familial MND. Familial MND accounts for 10% of all cases of the disease.

This list will help researchers to recruit patients across England, Wales and Northern Ireland, particularly when they have complex inclusion criteria and there are not enough suitable patient numbers from the researcher’s local area.

Prof Shaw’s team went on to demonstrate that the mutant FUS protein behaved abnormally in cells and accumulated in the motor neurones of people with this form of MND.

Prof Christopher Shaw

Mutations in the FUS gene are very rare and account for less than 1% of all cases of MND. For the families that are affected by the FUS gene mistake, a future test to identify the mutation may become available. This discovery helps us to glean a deeper understanding of what causes all types of MND. Investigators believe that discovering the genetic cause of familial MND will lead to a better understanding of what is going wrong in the more common, sporadic form of MND – as sporadic and familial MND are clinically indistinguishable, scientists believe that the mechanisms underlying both types of disease might be similar as well. Prof Shaw says: “We are extremely excited by this discovery which has come after many years of painstaking research. The collaboration between the Boston and London research groups

“FUS provides another powerful clue as to what causes MND. It is only by understanding the fundamental disease mechanisms that we will find a cure.”

Media coverage The story appeared on the ITN 10 O’Clock News on 19 February. Prof Shaw was interviewed as well as the Heaton-Ellis family who are affected by familial MND. This research story has also appeared on many consumer websites including the BBC News and Men’s Health websites as well as research news websites.

More information www.mndassociation.org/research/ research_explained/news_in_research Click on ‘Second new gene discovered in less than a year’. MND Connect: 08457 626262 or mndconnect@mndassociation.org Our research development team: 01604 611880 or research@mndassociation.org.

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What does this research mean to somebody affected by MND?

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has been crucial to this breakthrough.

So far we have contacted every member who is living with MND who has previously agreed to take part in any surveys. This is around 1,000 people. Every three months we will be contacting new members living with MND to offer them the opportunity to be included in this list. Look out for a letter from Sue Gayton who works in our care development team.

News in brief

Police raise pounds in memory of George Dedicated police officers have raised thousands of pounds in memory of their colleague George Campbell who died from MND. The officers, from Norfolk constabulary raised a terrific £2,800 plus online donations of a further £770 for the Norfolk Branch. They held a charity cricket match and four officers ran 22 miles around the peaks of Snowdon in Wales. DS Martin James, one of the officers leading the fundraising said: “George wasn’t just a friend but a colleague who was liked by everyone within the Special Branch Community and the Norfolk constabulary.”

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This is the second MND-causing gene to be identified in less than 12 months, a reflection of the accelerating pace of research around the world. A gene connected to a protein called TDP-43 was identified in March 2008, and now FUS in March 2009.

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Feature Clinical Research

MND research working to find an MND-specific Dr Martin Turner

ere at the MND Association we know that you place a high priority on MND research. We are committed to realising our goal that over the next six years everyone with MND in England, Wales and Northern Ireland will have the opportunity to take part in a clinical trial or other forms of research, should they so wish.

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Medical research falls into two main types. Firstly, there are pure (bench) scientists, that is, those who study processes in a culture dish. Then there are clinical researchers who study the actual patient or wider epidemiology (the study of the patterns, causes and control of disease in groups of people). The two types of research need to go hand in hand, and many MND research centres have experts in both.

Biomarkers – measuring MND

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Some MND research projects are happening already and one such project is currently being led by Dr Martin Turner at the John Radcliffe Hospital in Oxford.

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Dr Turner is a clinical researcher and he hopes his work will help to identify a predictable MND-specific ‘fingerprint’ or biomarker. This is a unique set of substances that help identify whether someone “Dr Turner has MND.

is a clinical researcher and he hopes his work will help to identify a predictable MND-specific ‘fingerprint’ or biomarker.”

Finding an MND biomarker will enable us to develop more accurate ways of measuring the progression of MND and the effects of potential treatments during clinical trials. Specific MND biomarkers may provide evidence linking what is happening in lab research to how the disease progresses in patients.

Understanding the MND journey

patients as they travel along their disease journey.

Dr Turner’s earlier research involved learning how to use cutting-edge brain imaging technology to try to tell us more about why motor neurones die in MND. He can now combine the latest MRI brain scanning technology with body fluid analysis to monitor patients as the disease progresses.

“This is particularly important when most cases of MND are not ‘genetic’ in any simple way, and yet we still do not have any specific test or marker for the disease. Such substances, or changes on a scan perhaps, are called ‘biomarkers’ – something that can be measured that it is unique to MND, or closely reflects disease progression.

He says: “It struck me that the enormous and significant advances in genetics and cellular biology over the last 50 years still needed to be firmly grounded in what was going on in the

“I want to try and establish a ‘cohort’ of MND patients who will be followed regularly over the course of their disease.”


Feature Clinical Research

fingerprint “Dr Turner’s work will also help us to make links between the physical and cognitive symptoms of the disease and how these relate to detailed images of the brain...” Making links

“I said ‘yes’ immediately as I want to do all that I can to help future generations. Yes, there is a risk that something may not come out of this research work but if we don’t contribute then we will never know.” John Pritchard from Alcester in Warwickshire was diagnosed last December. He is 67. John usually attends the Coventry MND clinic so the journey to Oxford is a 120 mile round trip. He explains how he got involved in the project: “We had a visit from Margaret McIntosh, our RCDA, shortly after Christmas, and she mentioned this work during our conversation. I thought it sounded a good idea. She kindly took my details and offered to contact Dr Turner on my behalf.” John has realistic expectations. “It would be nice if a quick result were found but this type of work needs completion before full benefits can be realised.”

Dr Turner does recognise that his research does not offer any sort of treatment to people who are living with the disease today. He knows too that any discoveries may also come too late to directly benefit all of those who take part. However, we do know that many people living with MND are passionate about playing a role in the search for a future effective treatment. “Even though I go to great lengths to ensure their comfort at all times, I realise that I am asking a lot of patients to undergo repeated MRI scanning and invasive procedures and some might find either one off-putting or too difficult due to disability,” explains Dr Turner. “Nonetheless, I firmly believe that we have to understand what is going on in patients with MND and this sort of clinical research is one way to try and find out. I really hope people with MND and the healthy volunteers will see my study as an investment in a larger and longer-term struggle against neurodegenerative diseases like MND.”

Who can get involved? People with all types of MND (recent or remote diagnosis) are invited to attend the Oxford Care Centre for one day every six months, for as long as you can travel and lie comfortably flat for up to one hour. Healthy volunteers are invited but only need to visit once. This could be your

husband, wife or a friend, if they are in good health, but not a blood relative.

What happens? Each person has a 45-minute MRI scan that looks at individual nerve pathways and activity throughout the brain and upper spinal cord. Dr Turner will then perform a lumbar puncture. This is a procedure involving the removal of a small amount of spinal fluid from the spinal canal. Following this, a small blood sample will be taken from your arm in the usual way. The spinal fluid and blood samples can then be used to look for potential biomarkers. The Medical Research Council provides £50 payment per visit to each participant, as a small thank you, and it also covers all travel expenses.

More information If you would like to get involved please visit the official study website: www.biomox.net. Or contact Dr Martin Turner directly. Dr Martin Turner Consultant Neurologist Department of Clinical Neurology West Wing Level 3 John Radcliffe Hospital Oxford OX3 9DU Tel: 01865 231842 Email: martin.turner@clneuro.ox.ac.uk

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“I visit Dr Turner at the John Radcliffe Hospital in Oxford anyway and on one visit he mentioned his research work and asked if I might be interested in taking part.

Fighting MND

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Steve Parsons is 51 and lives in Swindon. He was diagnosed with MND in September 2008 after experiencing symptoms earlier that year. He can no longer use his arms and hands and his speech is becoming affected. Steve is taking part in Dr Turner’s research project.

John Pritchard

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Dr Turner’s work will also help us to make links between the physical and cognitive (affecting behaviour, memory and thought) symptoms of the disease and how these relate to detailed images of the brain. He will also separate people with limb-onset MND from those with bulbar-onset MND in his analysis to see if there are unique features of these forms of the disease.

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Volunteers behind the scenes

A hidden army of volunteers are supporting our branches and groups across the country organising events, selling raffle tickets, baking cakes and serving teas – and all of them are making a real difference to the lives of people living with MND, their families and carers.

Back room boys - and girls Every branch and group has its own committee of dedicated volunteers who get together on a regular basis to ensure that people affected with MND in their area get as much support as possible.

But behind the scenes there are many people who are happy to help out on a regular, yet more casual basis, preferring to ‘muck in’ when needed without the formality of becoming a committee member. “These volunteers contribute a lot to keep local branches and groups running,” explains Ruth Barton, volunteering support and information co-ordinator. “They are often in the background, but nevertheless the Association wouldn’t function without them. We know they contribute in many different ways – time, skills, expertise and commitment – and all are equally important.” This hidden army of volunteers organise annual fundraising events, sell raffle tickets, bake cakes for sales or serve teas at meetings - their support is immense and ultimately makes a real difference to people living with MND, their families and carers.

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At a talk, she met Lady Hallifax who was then chair of the Reading Branch. “She said they were really in need of a newsletter editor. Before teaching, I worked for a software company so I felt I had a lot of the right experience to take on the role,” explains Mary. With a very demanding job as head of department at a Maidenhead secondary school, Mary juggles her time to fit. “I have to stress that it’s a team effort. Roland Lewis, who has MND, collates the stories and publicity officer Jane Gilbert writes many of them. I couldn’t do it on my own,” she says. Mary says the rewards are immense. “It keeps my computer skills going, but the main thing is how satisfying and enjoyable it is for me to read the stories that go into our newsletter, stories of incredible warmth and courage. I often feel I know the people well, and, as I often have their pictures, feel I know them when I see them at any of the charity events.”

Geoff Glover from the Cambridgeshire Branch got involved eight years ago when his wife Chris retired from her role as speech and language therapist and became an “As time went association vsitor and, Geoff became recently, AV co-ordinator.

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diagnosed with MND she wondered if she could help in any way.

Aldena Ellis

As time went by, Geoff became responsible for a number of things, including the printing, collating and posting of a six-page newsletter.

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“I deal with a constant flow of incoming and outgoing emails,” explains Geoff. “I also designed and produced the Branch Diary Card and ‘business cards’ for AVs as well as a number of other jobs that I

responsible for a

“Chris is brilliant with number of things, people, but she’s first to admit that she is a bit of including the a technophobe. That’s printing, collating where I came in!” says and posting of a sixGeoff. “I’d used computers for a number page newsletter.” of years and became, in effect, Chris’ PA or, possibly more accurately, dogsbody! Mary Watson

Mary Watson edits the newsletter for Reading and West Berks Branch. She got involved in 2001. Languages teacher Mary is also a member of the National Women’s Register (NWR) and when the husband of another member was

“Back in 2001, the Cambridgeshire Branch was in dire straits, held together mainly by the valiant efforts of Jools Cook who was then the local volunteer development co-ordinator, so I found myself volunteering to do one or two other ‘little jobs’.”

Geoff Glover


Volunteers behind the scenes

would cope so well in similar circumstances, and that is very humbling.” The Blackpool, Wyre and Fylde Branch has several helpers behind the scenes for fundraising and open meetings. Aldena Ellis, in particular, comes along to every open meeting to make the “The Blackpool, teas, both at the beginning and end of the meeting. Wyre and Fylde Gwynneth Mugonyi, branch vicechair and contact, asked Aldena to come along to a meeting after her husband Richard died from MND. She offered to organise the kitchen duties and make the teas and has been doing it ever since.

Branch have several helpers behind the scenes for fundraising and open meetings.”

“We couldn’t do without her,” says Gwynneth. “There’s something about Aldena - if someone goes up for a tea, she’s so understanding and thoughtful.

Generally there are three people who run the Blackpool Branch Committee, so we couldn’t cope without the help of the others.” These are just a few examples of ways people like you are contributing to making a difference to people living with MND and their families. You may be one of them – or know someone who is. Or – It could be you! The support provided is immense. Volunteering for your local branch or group can be rewarding, fun and a great way to meet new people. If you’re not already involved locally, and don’t have the time to be on a committee, think about how you might like to be involved, what you could offer and what you would like to get from it. For more information on how to get involved contact the volunteering team, on 01604 611681, email volunteering@mndassociation.org

The MND Association was established in 1979 to ensure that people with MND can achieve the highest quality of life possible, and to fund and promote research to bring about an end to MND. An independent charity with over 3,000 active volunteers nationwide, the Association currently employs 150 staff and has an annual income of £13m.

Chair Elect of The Board Of Trustees (Voluntary position) was able to do on the computer.”

Do you have the leadership qualities, the passion and motivation to help the MND Association make a difference?

Geoff also attends branch get-togethers, regional and national conferences, but he was quite happy not to join the branch committee. “I feel that serving on the same committee as your spouse is fraught with difficulties. Better to be the ‘back-room boy’, and keep our arguments private!” he says.

The current Chair of the Board of Trustees is due to complete his term of office in 2010 and we are seeking a suitably qualified and experienced person to work as Chairman Elect from September 2009 taking over as Chairman in 2010.

Soon Geoff will be handing over the responsibility for the production of the newsletter but will continue to support Chris in her role. “The reason I help is threefold – it allows Chris to avoid the bits of computer work she finds difficult. Secondly it gives her more time to devote to the real work of an AV which is relating directly with people. “But my main reason for doing it is my deep respect and admiration for all those people I have met with MND who remain so cheerful and positive, making the most of every minute, and setting a wonderful example to us all. I honestly find that amazing, and I cannot imagine that I

Working with the current Chairman and the Chief Executive of the Association you will be responsible for ensuring that the Board of Trustees fulfils its responsibilities in relation to the governance and achievement of the Mission and Vision of the Association.

If you have proven leadership and business management skills, a good understanding of business strategy, proven public speaking skills and the confidence to represent the Association externally when required we would like to hear from you. Conditions of service Average of three/four days per month including some evening and weekend work will be required for the four-year term of office. Agreed expenses will be paid and the training opportunities will be available during the term of office. Closing Date is: 5 June 2009 Interviews to be held in June and July 2009 Applications by CV: to the Human Resource Team, MND Association, PO Box 246, Northampton, NN1 2PR. Or by email to applications@mndassociation.org For an application pack for this voluntary position visit www.mndassociation.org/jobs, email applications@mndassociation.org or write to the HR team as above. Alternatively, call our answer phone on 01604 611859 (24hrs). The MND Association believes in treating everyone with dignity and respect. We encourage applications from all sectors of the community.

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The role will require you:• to provide leadership and support to the Board of Trustees. • to work with the Chief Executive to prepare and Chair often complex Board Meetings. • to represent the Association externally. • to work with the Chief Executive to further develop the integration of the work of the Board with the staff and volunteers.

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Editor’s Desk

Hello all Mouseketeers The following ‘email’ members would like to make contact with others. Noel Boland, Gloucestershire: boland_noel@hotmail.com Paul Burton*, Mid Glamorgan: paul@gw0jtk.freeserve.co.uk Liam Coughlin*, Vale of Glamorgan: liam@coughlin.fsnet.co.uk Nigel Cowie, Denbighshire: n.cowie@virgin.net Simon Edmands, Surrey: s.edmands@ukintpress.com Stuart Hignell*, South Glamorgan: stuart@shignell.fsnet.co.uk Christine Hosgood-Jones*, Swansea: chjmaternity@hotmail.com Rajesh Kanathil*, India: rajeshkanathil@hotmail.com Barbara Keenan*, Lincoln: bkeenan47@tiscali.co.uk Grahame Knight*, Oxford: grahame.knight@btinternet.com John Mackie*, Fife: Johnmackie@9crawford.fsnet.co.uk Gwynneth Mugonyi, Blackpool: llangennit@aol.com Geeta None*, India: geetanone44@yahoo.com Barry Norman*, Great Yarmouth: bigbadger@btinternet.com

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Catherine Paterson, Argyll: enquiries@dochasfund.org.uk M

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Gil Rice*, Dorset: gil@rice4.freeserve.co.uk Margaret Sedgwick*, Cumbria: m.sedgwick@virgin.net Jenni Shergold, Wellingborough: WwJENFAIRCLEAN@aol.com Liz Shipley*, Newcastle-upon-Tyne: lizzshipley@blueyonder.co.uk *indicates people with MND

NB. We are happy to provide this ‘mouseketeers’ service for members as a means of enabling people living with MND to make contact with others and trust that this is found to be beneficial.

Call for trustee nominations

Sneaky

Have you thought of becoming one of our trustees? It’s now nomination time and this year, owing to the rotation policy, we will be looking for new trustees to fill four vacancies on the board. Alan Horwell, vice-chairman of the board, is encouraging anyone to put their name forward. “This is a way of being part of making a difference for people with MND at a strategic level,” he said. Whilst having a personal experience of MND is helpful in undertaking these roles, this year we would also like to encourage applications from members with skills or expertise in the following areas: strategic finance, health and social service management, marketing/communications and high-level fundraising. Alan gets a lot out of his role. “I enjoy working with other trustees on dealing in a balanced way with the strategic issues that face the Association,” he said. “That is why it is essential that we have trustees with a range of experience and skills.” This could be you! If you would also enjoy the challenge of volunteering at a national level, get in touch. Or perhaps you know a friend who would? Please feel free to pass the information on to them. Enclosed with this issue of Thumb Print is the AGM announcement which contains the trustee nomination form. This is also available on our website to download by visiting www.mndassociation.org For more information about the role and an information pack contact Malcolm Watkins, on 01604 611814, email malcolm.watkins@mndassociation.org.

Health advice for carers Crossroads has produced a postcard called ‘Carers guide to keeping well’, which suggests ways carers can look after their health. The postcard is designed to be kept visible ie on the fridge, by the phone or by the front door. Carers can request copies free of charge by telephone; 0845 450 6555, or email: information@crossroads.org.uk

Social networking sites relating to MND: www.Build-UK.net www.healthtalkonline.org.uk www.PatientsLikeMe.com www.alschatroom.com www.Facebook.com www.MySpace.com www.flickr.com www.friendsreunited.com

These sites have been recommended by people affected by MND and are not as such endorsed by the MND Association.

It’s a sneaky illness this MND. It’s always playing tricks on me. One day my muscles are feeling fine and strong Then within a few weeks they have almost gone. First it was my speech that started to go Then my left leg...so I can only walk slow. So I need my ‘Say it Sam’ to help when I talk And my Rollator to help me when I walk. It’s really sneaky while I am in bed asleep The next day my arm and fingers are very weak. Then without realising it’s got my tongue That gets me thinking... what else can go wrong. Because of my tongue it takes ages to eat And sometimes I have trouble cutting up the meat. ‘Sneaky’ crept up on me as I was opening the door The next minute I was on my back and on the floor. Night cramp and excess salvia can happen most days ‘Just keep taking the pills’ that’s all they can say. But I have to say that ‘sneaky’ hasn’t won this fight One day the research teams will get it just right. Barrie Butterton (February 2009)

Read any good books lately? If so please let us know as we are preparing a list of books about MND to put on our website. We are particularly interested in biographies, personal accounts and fiction. Some already on the list are: Tuesdays with Morrie Rowing without oars My donkey body My brothers keeper Right to die If you have any books to add to the list please phone Sheila Lloyd, on 01604 611838, or email sheila.lloyd@mndassociation.org

Websites: Useful sites about MND (also known as ALS and Lou Gehrig’s Disease): The International Alliance on ALS/MND www.alsmndalliance.org/ The ALS Association www.alsa.org The ALS Survival Guide www.lougehrigsdisease.net Kennedy’s Disease Association www.kennedysdisease.org. The PMA/PLS Email Support Group. Email care@mndassociation.org Support for carers www.carersuk.org Don’t forget that MND Connect - 08457 626262 - is always on hand to offer information, advice and support. You can also email mndconnect@mndassociation.org or view our website www.mndassociation.org for further information.

Thumb Print is available as a pdf on our website. Visit www.mndassociation.org/membership


Editor’s Desk

Special offer for Blue Badge atlas The new Concise UK Road Atlas for Blue Badge drivers has now been published and you can buy it with a 30 per cent discount.

To order and claim your 30 per cent discount visit www.thepieguide.com/shop and click on the Concise UK Atlas.

The revised (2nd edition) UK Road Atlas for Blue Badge Drivers is a unique spiral bound, handy sized, 256-paged customised atlas for Blue Badge holders driving in the UK.

Fill in your details and you will automatically receive the atlas for £9.99 including postage and packaging (usual price £13.98 inc p&p).

The atlas has been sponsored by the Highways Agency and Direct Gov and is designed to be the official journey planning tool for the Blue Badge community. It is a journey planner and destination guide with:

Alternatively, call 0844 847 0875.

Throughout the summer months there will be special offers on gifts and branded items previously promoted in our sales catalogues. Visit www.mndassociation.org/shop to check out the latest offers.

You can send a cheque for £9.99 payable to PIE Enterprises including your name, address, phone number and email address (if applicable) to: PIE Enterprises Ltd,

On-street parking rules for every council in the UK

Caledonia House,

Accessible accommodation guide

London N1 9NG

Petrol stations and accessible toilets information

Sixty town centre plans with on-street parking rules, blue badge bays, accessible toilets and accessible car park information.

Please allow three to five working days for your atlas to be delivered.

MND Association Shop

223 Pentonville Road,

It also features: ●

Tolls with discounts

Accessible beaches

Disabled-friendly caravan sites

Shopmobility locations

Wheelyboat sites

Motorway service information.

From Small Beginnings

From Small Beginnings, together with Roger Carus’ personal paper published in the British Medical Journal, February 1980, and the original ‘What is MND’ leaflet have been recreated in their original form and are available as pdf documents. If you would be interested in receiving copies Peggy’s daughter, Lesley Ogden, of the Oxfordshire Branch can be contacted on 01235 850372 or email landjogden@btinternet.com

Did you know…? • build and sustain supportive relationships with people with MND as well as their families and carers • are provided with full training, support from an experienced local team, and are reimbursed all out of pocket expenses.

Did you know…? We need people like YOU to volunteer as an association visitor.

If you have any questions, experiences, comments or suggestions you would like to share with us and other readers please send your letters to: The Editor, Thumb Print, PO Box 246, Northampton NN1 2PR or email to editor@mndassociation.org

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Our association visitors:

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Peggy’s son Paul had MND, and she was very anxious that the events during 1978/79, when the three groups from London, Nottingham and Scunthorpe came together to found the Association were recorded.

For more information, contact the volunteering team, on 01604 611681, email volunteering@mndassociation.org or visit www.mndassociation.org/volunteeering

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To mark our 10th anniversary, one of our founder members, Peggy Betterton (d. 2004), produced an historical document about the early days of the Association, entitled From Small Beginnings.

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Walk to d’Feet* MND

Attention all walkers!

We need you!

Shortest walk, biggest

ith our national event, Walk to d’Feet* MND held all year round, we need your help more than ever this year to help increase awareness and funds in support of our 30th Anniversary.

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With four seasons to choose from and links to special events throughout the year; there’s a time and a theme to suit everyone. Walks can also take place during our MND Awareness Week (20-28 June) – whatever suits you best. This is a fantastic opportunity for branches, groups and individuals to raise awareness and much-needed funds through sponsored walks up and down the country. You don’t have to be super-fit to join our walks. Just pick your own pace and enjoy the scenery. You can either host a walk as a team leader or take part in a walk in your area – keep a look out on our website for updated venues near you. To mark our 30th Anniversary of the Association, we’ve come up with some interesting ideas which you might like to use to theme your event: ● a 30-mile walk ● a 30-minute walk ● 30 walkers per team ● £30 sponsorship target per walker.

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To show our appreciation to all our walkers, we have designed a special limited edition commemorative anniversary lapel pin badge. Make sure you get one to add to your collection and wear it on the day. You can order these and other support materials for free when you receive your fundraising pack. To support you in your fundraising endeavours, we will provide you with an informative fundraising support pack to help get you started.

Walks don’t always have to be long - for some people the shortest walk can be the biggest challenge…as Ashley Morgan found out. iving with MND meant that walking had become a thing of the past for Ashley Morgan. Then she hit on the idea of raising funds by doing the shortest walk ever – which for her was the equivalent of climbing a mountain.

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“I knew the chances of getting my friends to walk 20 miles for charity were slim to nil, but I was more than confident I could get them to turn up at the pub!” says Ashley. “I decided to keep it short and simple. I wanted to do something for Walk to d’Feet* MND.”

pub without a second thought. It probably took me two or three minutes. Being diagnosed with MND in 2003 changed all that.”

Her partner Colin’s response was that she’d hurt herself. That made Ashley even more determined than ever! She was tired of hearing about what she couldn’t do any more.

Ashley’s plan was to walk the 225 yards from her home to her local Prince Alfred pub in Farnham, Surrey. A real challenge that her family and friends would have to pay for!

She recalls: “I used to walk round to the

“I told them I wasn’t asking them to walk

*WALK TO D’FEET is a Trademark of the ALS Association and is used with permission. All rights reserved.


Walk to d’Feet* MND

Helpful tips

challenge

● For your end destination, choose a venue where people gather regularly, and preferably where they know you or your family (eg pub, social club, community centre, school, church, sports centre, etc). This will get your local community involved and will make it easier to sign up pledges before the event.

Ashley with her family and friends on her shortest walk

● Choose a route in a busy or well-populated area. Tell people about it beforehand inviting them to come out and cheer you on. ● Have someone walk with you as official timekeeper armed with a stop watch. ● Organise entertainment or a party to take place when your walk is finished. In addition to celebrating your success, this can help raise further funds from sales of food and drink, or other activities such as a raffle. If it’s a pub, ask the publican for a donation from the day’s takings, after all, your event will help increase the pub’s turnover.

She says: “It was such a fantastic day! Loads of friends and neighbours turned out to walk along with me and cheer me on. I had hoped to raise maybe £500, so the outpouring of support from so many people, and the final total raised were just overwhelming! “I have such terrific memories of that day; the roads full with people walking with me cheering and having a great time. It was like a street party, and it really brought the community together! I never dreamed so many people would gather outside my house to walk with me; I just thought they would wait round at the pub for me to turn up.

Why don’t you rise to the challenge and try to set a new record for the Shortest Walk?

● Get the local press to cover the story before the event and on the day. Make sure they print details of your Justgiving web page. ● Get bucket carriers to walk with you to collect donations, and make sure there are plenty of collection pots at the venue. ● An escort to lead the way will add to the festivities and help draw a crowd. Maybe someone in a vintage car, or a marching band or a troupe of baton twirlers. I had 86-year-old Bert on his mobility scooter! ● The MND Association can supply you with plenty of balloons, T-shirts, posters, leaflets, stickers, collection pots, etc, so make the most of what’s available.

THE STATISTICS One person with MND walked 225 yards in 22 mins 5 secs and raised £5,200.

THE CHALLENGE If you have MND and can still just about walk, do your own ‘short walk’ to suit your ability and try to raise more than £5,200. For help with ideas on when, how and where to do your Shortest Walk, our fundraising team are always ready to help, on 01604 611860 or email: fundraising@mndassociation.org Ashley collects her award with Kirstine Knox and her partner Colin

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Ashley is now challenging anyone with MND, who can still just about walk, to do their own ‘Shortest Walk’ and try to raise more money than she did.

Ashley’s parents, Jim with people walking with me cheering and Phyllis Swint of Virginia, USA, have and having a great offered to get the fundraising started and time.” would like to sponsor the first person to take up the challenge!

● Email is an excellent means of spreading the word quickly and cheaply.

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miles, just sponsor me to walk 225 yards to the pub instead. They were quite happy to pay for the privilege of not having to walk a marathon, and their generosity helped me raise a mammoth £5,200!”

● Set up a Justgiving web page (www.justgiving.com). The money is collected for you; people from far afield and foreign countries can donate with ease; gift aid can be included; and it’s a great way to help publicise your walk.

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“Then the real surprise and added bonus came when I found out I had won an award for raising so much money. When Colin and I attended the AGM to collect the award, we met a lot of people and formed some new friendships, which have continued. It also led to me getting involved more with the Association through press activity and public speaking, which I have really enjoyed because “I have such terrific I feel I’ve been able to memories of that do something quite day; the roads full useful.”

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Fundraising News

News in brief

Firewalk challenge elevision presenter Natalie Pinkham joined more than 40 MND Association fundraisers to bravely walk across 20ft of burning coals at a temperature of over 1,200 degrees Fahrenheit.

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From left: Chris Harding, Liam Dwyer, Steve Foley and Gary Cook

Grand gesture Dstl Estates and Serco at Fort Halstead donated £1,000 to the Association – the company’s nominated chaity of the year 2008.

The thrill-seekers were taking part in our first Firewalk Challenge, held at Northampton Town Football Club in March, an event that was a huge success.

The cheque was presented to former Fort Halstead estates foreman Liam Dwyer, who worked there for over 10 years. Liam has MND and was not only a colleague but a good friend with the organisation, and still is. The total amount was raised by a joint effort between Dstl and Serco in honour of the continuing fundraising Liam is doing.

Natalie, 29, signed up for the challenge after witnessing first hand the devastating affects of MND. Her friend rugby star Jarrod Cunningham died in 2007, aged 38, after a five-year battle with the disease. Natalie said: “My friend Jarrod always advocated the power of positive thinking and the challenge was all about that. “Natalie, 29, “I was thinking of him every step I took over the hot coals. When I finished the walk I felt ten feet tall and capable of anything.

Golf marathon

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Cousins Charlie Thomson and Tom Newman decided to do something in memory of their dads, Jamie and Bruce. Jamie died from cancer last year and his brother Bruce died from MND, so their sons wanted to take part in a challenge that would remind them of their loved ones. M

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As golfing is a passion that runs in the family, they decided on a golf marathon. In September they completed 18 holes of golf at 10 different courses, in 10 counties over five days – raising a staggering £5,000 for North London Branch.

Thank you! A big thank you goes to the Yorkshire Building Society Charitable Foundation for its continuing support of the Northern Equipment Loan Service. Earlier this year the Foundation provided further funding to the sum of £1,697 for the purchase of two riser recliner armchairs. The support given both nationally and locally over the years has been greatly appreciated.

signed up for the challenge after witnessing first hand the devastating affects of MND”

“It is impossible to convey in words the devastating nature of MND and I’m delighted to be able to support the MND Association.” The challengers took part in a two-hour special motivational training session run by experts BLAZE before walking over the hot coals. The event raised a total of more than £7,000 for the Association and the firewalk was such a huge success it will be repeated later this year. Community events fundraiser, Taryn Third said the atmosphere on the

evening was fantastic with family and friends offering their support and a Samba band providing the entertainment. She said: “I was really impressed with the support for this event. “When everybody arrived there were some really nervous faces but after the firewalk they looked elated – you could literally feel the adrenalin.” Members from the Northampton Branch supported the event by serving refreshments to the 250-strong crowd of spectators, including Association staff members who were there to cheer on their six colleagues who braved the experience. Branch member Jackie Atkins said: “It was certainly very different and we were delighted to help out. “However I can safely say that I will not be doing the walk myself – ever!”


Fundraising News

Tribute Funds

Thank you to everyone who supported the event. The event was also great for awareness raising as the firewalk was broadcast live on TalkSport and journalists from the Northampton Chronicle and Echo and the Mail on Sunday attended.

What a difference a year makes…

Feeling inspired? If you think you can stand the heat details of future firewalks will appear on our website when they are confirmed, visit www.mndassociation.org/fundraising

A year ago we reported on the early progress of two new Tribute Fund initiatives: the new, upgraded tribute fund websites and the launch of the Tribute Funds with legacies service. This service offers the best of both gifting options by enabling a legacy to be pledged to any of our Tribute Funds. Both initiatives are proving popular with our supporters, and we now have over 300 Tribute Funds taking up the free website option. The already extensive range of features provided by these sites continues to be developed, and Christmas 2008 saw the introduction of further attractive, seasonal design themes. The importance of legacies cannot be emphasised enough. They form a vital part of our funding, accounting for over a third of our annual income. The ability to link a legacy pledge to a Tribute Fund has now provided a growing section of our supporters with a way of making this an even more personal and lasting gesture in the fight against this devastating disease.

We are pleased to announce our partnership with Robert Half, after being selected as the specialist finance and accounting recruitment firm’s UK corporate charity for 2009. Commenting on the new partnership, Phil Sheridan, managing director of Robert Half UK said: “We evaluate each charity that we partner with carefully to make sure we work with organisations where our efforts can make a measurable difference. “I am delighted that we will be working with the MND Association over the next twelve months to raise funds for this worthwhile cause, where we can make a

real difference to the lives of those impacted by this disease. “Employees from our 30 offices across the UK are already embarking on various activities to help raise funds for MND including: triathlons, quiz nights, and fun runs.” Phil will be kick-starting Robert Half’s fundraising efforts by taking part in a cycle ride from London to Paris in support of MND. If you would like to support his efforts please visit www.justgiving.com/philipsheridan1 We thank all at Robert Half for their support, and wish Phil the best of luck on his cycle to Paris!

us…”

We rely almost entirely on our supporters, whose generosity never fails to amaze. Large or small, we are grateful for all the donations, gifts and legacies that we receive and the fundraising events and sponsorships that people undertake. If you would like further information about MND Association Tribute Funds and/or legacies, please call Stephen May, on 01604 611865, email stephen.may@mndassociation.org

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Recruitment firm pledges support

We recognise that considering, deciding and then actually making a will, or updating an Suzanne Satow: existing one, can a little time. “We have found take So we are very making the (Jim grateful that in the space of just a Bailey Tribute over two per Fund) website a year, cent of our Tribute very positive Funds now have experience at a legacy pledges within very sad time for recorded them.

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Down Your Way

Back to the ’60s Chelmsford/Mid Essex Branch raised over £870 with a ’60s evening of song and dance – including an X-Factor-style judging panel. Mischievous branch members Peter, Steve White and Brian Wells gave their verdicts on the dancing and singing skills of everyone there. Many dressed in suitable gear including mini skirts

and knee high boots. Even the men were trendy! “Unfortunately we weren’t voted good enough to get through to Strictly Come Dancing or the X-Factor!” says Anne White. “But we will try again when we have another event like this and try and retrace our youth!”

The Guildford Harmony Women’s Barbershop Chorus serenaded East Surrey Branch members at their recent meeting. Around 40 people attended, enjoying a fine lunch before listening to an hour of song. Barry Woon’s granddaughter Freya collected over £140 at his 80th birthday party in memory of the granny she never knew. His wife Norah died from MND in 1998, a few months before Freya was born. “It was a wonderful thing for Freya to do,” says Barry, a former association visitor. “It made me very proud.” A charity evening at the WOW! Gallery in Dorking raised £150 for the East Surrey Branch. Around 50 people attended the event to launch the gallery’s latest exhibition, Wonderful Wood. Pictured are gallery owner Caroline Salmon (front left) and Sandra Grant (front right), Dorking Town Centre Manager.

Alcohol-free Andy He did it! Andy McIntyre decided to ditch the booze for a whole year and raised over £6,200. Friends and family all pitched in to support Andy’s efforts. He decided to give up alcohol to commemorate the 15th anniversary of his dad’s death from MND. He celebrated his achievement with a glass of Italian red wine a few minutes past midnight on January 1. Well done Andy!

Boxing Day runners

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Every year since 1974, a group of runners has got together to blow away Christmas cobwebs by taking part in the Saltwood Run. One of the original runners, Terry Davis, died from MND and now any funds raised during the annual event go to the Association’s East Kent Development Group.

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Last Christmas, over 800 runners took part and committee member Brian Sackett and his wife Diane brought their own team of athletes to cheer on. The event raised a fantastic £3,000.

Sleeping Beauty – with a twist Over £1,000 was raised for the Association from two performances of Ystradown Valentine’s Show in South Wales. The amateur cast threw themselves into a new version of Sleeping Beauty dreamed up by Corrina Turner.

Diane Sackett surrounded by her athletic family

The play included all manner of new additions to the original fairy story, including three tipsy godmothers (pictured), a wicked witch, a couple of over-the-top nannies to add to the fun!


Down Your Way

Team effort The combined efforts of the congregation of Felsted United Reformed Church in Essex raised £1,050 for Chelmsford Branch. Members raised the funds from a harvest sale, autumn social, carnival stall and car boot sales. Steven White from Chelmsford Branch was delighted to collect the cheque.

Freewheeling to forty

Jonathan Meyes and a group of friends braved the waters to take part in a Great River Race and raise over £500 for the Association. Our picture shows them back on dry land after their smashing, splashing achievement.

Most people celebrate their 40th birthday with a party. Not Stuart Swanson! Instead he decided to cycle over a thousand miles and raised funds for the Association in the process. Stuart’s mother died from MND and he wanted to do something worthwhile. Norfolk based Stuart was joined by his neighbour Rob Linge, a Gulf War veteran who lost his arm in the conflict. They cycled from Lands’ End to John O’Groats to raise funds equally for the Norfolk Branch, Macmillan Cancer Support and the British Limbless Ex-Servicemen’s Association.

The 23rd Didcot Sea Scout Group raised £225 for the Oxfordshire Branch by holding a bric-a-brac sale. Branch chair David Cairns is pictured accepting the cheque. Scout leader Lee Hackett says: “I’m delighted we rasied such a good amount and proud of the way the Scouts rose to the challenge.”

MND Rocks Ian Funnell and a group of friends organised a rock concert and raised over £3,500 for the West Sussex South Branch. Ian, who has MND, arranged the event, which featured three local rock bands and tribute group Letz Zepp, at Worthing Assembly Hall. The groups, including Highway Jones, On Fire and the Mad Dogs, all gave their time freely as well as Andy Thomas who supplied the sound system. When Ian told Julia Franklin the chair of West Sussex South Branch that she would need to wear leathers to say a few words at the event, she admitted that being a rock chick wasn’t part of her past. True to the cause, though, she found a vintage fringed rocker’s jacket in time for the gig – wore it on the night and then auctioned it!

Sarah Coulam and her mum May raised over £224 for East Surrey Branch with a Pampered Chef party. Everyone who attended watched a cookery demonstration and got to try the food afterwards!

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Take a walk Three generations of one family are stepping up to raise funds. Jacqui Daniel and her mum Carole Taylor are training for May’s 26-mile Playtex Moonwalk in Hyde Park, London.

Family affair When his mum Susan was diagnosed with MND, Richard Hollis decided to do something different to raise funds. Richard, a teacher at a Wellingborough secondary school, roped in fellow teacher Stuart and together the two of them set off for Turkey in a 2CV limousine. Richard was originally building the car for his sister Dawn’s wedding. But after their mum was diagnosed, the event was brought forward and the

car wasn’t ready in time. Undaunted, Richard and Stuart used the car to drive through 19 countries in 14 days, raising a fantastic £2,000 for the Association. Susan is thrilled by the fundraising efforts of her children. Dawn donated some money from her wedding gifts, and her other son Matthew hopes to run the London Marathon. “I’m so very grateful and proud of them,” says Susan, from Market Harborough.

And while Jacqui’s daughter Phoebe is too young for the event, the nine-yearold is arranging her own five-mile mini marathon for the Association.

Artistic Malcolm Paley, whose wife Carol died of MND, raised £160 for Durham Group from face painting.

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Phoebe is hoping to raise as many funds as possible for the Association in memory of her grandfather Peter Daniel who died from MND before she was born. She plans to run her own minimarathon.

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Legacies provide over a third of our annual income

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For more information and to request a free Legacy Information pack, visit: www.mndassociation. org/legacies Alternatively, please call Stephen May on 01604 611865 or email stephen.may@mndassociation.org Please quote reference 09TPSP.

We need your support to help us continue our vital work

Registered Charity No 294354

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Legacies of all values are essential in maintaining the firm financial base that helps provide our extensive care and support services, and the funding of major research that will hopefully one day find a cure for MND. But only one in seven of us who makes a Will, also includes a gift to charity. You can make a real difference in the fight against this cruel disease by leaving a legacy to the MND Association. It’s straightforward to do and it’s free of inheritance tax. If you wish you can now pledge your legacy within an MND Association personal Tribute Fund.

The products and services advertised or promoted in Thumb Print, including loose promotional inserts, should not be taken as recommendations by the Association, who cannot be held responsible should any complaint arise.


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Services

The MND Association offers a wide range of services for people living with MND, their carers and health and social care professionals.

Information, advice & support ● ● ●

MND Connect Printed publications Educational opportunities and service development advice for healthcare professionals Direct contact with a network of association visitors, branches and groups and regional care development advisers

Equipment loan ●

A range of care equipment can be loaned to enable continuing independence and comfort for people with MND

Financial support ●

Financial support is available to help families with additional costs which may arise from living with MND

Further informaton on the above services is available from MND Connect

Information, advice & support on all aspects of MND

email: mndconnect@mndassociation.org website: www.mndassociation.org

MND Connect open Monday to Friday: 9.00am to 5.00pm and 7.00pm to 10.30pm

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Please send me: information about MND information on the work of the Association information on how to become a volunteer a membership form I am a: person with MND carer Health and social care professional other

I am interested in helping the Association in the following ways: Legacies Personal Tribute Funds Gift Aid Give as you Earn Fundraising

NAME

ADDRESS

I enclose a donation of £ For credit card donations telephone national office: 01604 250505

Postcode

Your details will be added to our database.

Send to: MND Association PO Box 246 Northampton NN1 2PR

REGISTERED CHARITY NO. 294354

From time to time we may write to you regarding developments about MND to seek your support for our work. Please tick the box if you do not wish to receive any further mailings.

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