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The magazine of the Motor Neurone Disease Association

Thumb Print Winter 2009/10

inside

Our 30th anniversary raffle success


contents 4

Chairman’s column and news

A news update including the latest research breakthroughs.

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Palliative care

Mike Hardy, who has PLS, helps remove the mystery of palliative care with an interview with Dr Ros Pugh, consultant at the Macmillan Unit in Christchurch.

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Telling it as it is

Our readers share their inspirational, and often moving, stories of living with MND.

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International Symposium on ALS/ MND

Highlights from Berlin. Now in its 20th year, the symposium is the largest medical conference on MND.

30th anniversary

In this last 30th anniversary souvenir edition, Joyce Prince, one of the founder members, looks back over the 30 years.

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Making MND matter at the general election Politics. Love it or hate it – the election provides us with a great opportunity to ensure MND is high on the political agenda. Read how you can get involved.

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Starting out young

Branches and groups are always looking out for new volunteers. Whether an hour here or there or a more formal role, the personal rewards can be great as one young long-term volunteer explains…

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OSCARRs results

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Leaps and bounds to raise funds

Beginning in Scotland, one young man aims to raise funds by scaling, jumping and conquering any buildings or stairs he encounters on his journey to Paris. Using the technique called ‘parkour’ Johnny ‘Sticky’ Budden will be travelling the 1,000 miles on foot (and hand) and sometimes even somersaulting.

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Walk to d’feet* MND

A round up of the past year’s activities.

Fundraising

Our first national raffle was a fantastic success. Plus read about the determination of one of our amazing London Marathon runners.

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Down your way

Read about the exciting and creative fundraising activities taking place around the country.

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Editor’s Desk

A selection of your correspondence and information.

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Seeing the bigger picture

Could you become one of our trustees?

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Front cover photo: 30th anniversary raffle winner Sue Rice with her sister, Annie Walker, who has MND. Full story on page 28.

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chief executive Diary dates 2010

Leading the way

Walk to d’feet MND†† Nationwide All year round

I feel immensely proud and privileged as we enter 2010 to be part of an organisation that is truly leading the way in MND research.

Spring conferences* Newport, Wales 17 April Dartford 18 April Harrogate 15 May Blackpool 16 May Cheshunt 23 May London Marathon London 25 April

††

MND Awareness Week Nationwide 19-27 June 10K British Road Race†† London 11 July Annual conference and AGM* Venue tba 12 September Great North Run†† Newcastle 19 September Mount Kilimanjaro Challenge†† Kenya 16-26 October Run Morocco Challenge†† Morocco 12-18 November International Symposium on ALS/MND* Florida, USA 11-13 December *Enquiries contact the conference team on 01604 611845 for details †† Enquiries contact the fundraising team on 01604 611860 for details

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 Website: www.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.

A record 865 delegates from around the world attended our 20th International Symposium in Berlin in December. The symposium is regarded as the premier event in the international MND research calendar, as is reflected in the extremely high quality of presentations. Just as importantly the symposium creates a platform where researchers and clinicians can meet others with similar interests to forge new collaborations, ask questions and debate ideas to push research forward to a new level. Baroness Ilora Finlay, one of our patrons and a top palliative care consultant, gave an uplifting lecture at the opening of the symposium to highlight how essential good palliative care is. I’m delighted that eminent MND researcher Prof Chris Shaw, who has some of his work funded by the Association, was presented with the Forbes Norris Award at the symposium in recognition of his outstanding work as a clinician, teacher and researcher. Prof Shaw is leading an international consortium of researchers in an exciting new £4.6 million research initiative funded by the Wellcome Trust and the Medical Research Council, the largest grant for MND research in this country (see page 5).

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

However, one thing is clear, advances in research will only continue if funding and awareness of the disease continue to increase and I appeal for your continued support in these areas. We are offering our supporters more fundraising opportunities than ever in our fabulous new events diary, enclosed with this edition of Thumb Print. Please show the diary to your family and friends. The general election provides us with a great opportunity to ensure MND is high on the political agenda. I would urge you to make your voice heard and get involved in our important campaigning work so that together we can really make MND matter at the general election. Read more on page 21. Thank you for your continued support. I wish you all a peaceful new year. With warm regards,

Dr Kirstine Knox, Chief executive

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news

Invitation to open day Do you want to find out more about research into MND and Alzheimer’s disease? You can meet the scientists and see their research at a Neurodegenerative Disease Research Open Day on 24 April 2010 organised by the Institute of Psychiatry at King’s College London. A full and active day’s programme, open to all, starts with a short introduction, followed by several guided visits to meet and talk to scientists in their research labs. A free sandwich lunch and light refreshments will be provided. The day will finish with a Q&A session with a panel of experts including Prof Chris Shaw, an eminent MND researcher.

How to attend Admission is free but will be restricted to named ticket holders only. The open day is a popular event and tickets will be issued by lottery drawn after the closing date of 24 March 2010. All applicants will be notified after the closing date. To apply for a ticket please

The open day is a popular event and tickets will be issued by lottery

New emergency text service

Chairman’s column The International Symposium on ALS/MND is a unique annual event which brings together leading international researchers and health and social care professionals to present and debate key innovations in their respective fields. You can read further details about this year’s record-breaking event in this edition of Thumb Print. The MND Association organises the Symposium in co-operation with the International Alliance of ALS/MND Associations, which represents more than 50 national patient support and advocacy groups from over 40 countries worldwide, and which I am proud to serve as a Board Member. In parallel with the Symposium, the Alliance recently held its 17th Annual Meetings in Berlin. Attendance this year was the highest yet, with 90 delegates representing member associations from 22 different countries. Each year at the Symposium, the International Alliance announces the winner of the Forbes-Norris Award, which is given to a physician considered by their peers in the MND community to have shown exceptional care and compassion in the study and management MND. I was delighted that this year’s award went to the MND Association’s nominee, Prof Chris Shaw. Chris is an outstanding clinician, teacher and researcher and an internationally acknowledged authority on MND with whom the Association has worked closely for many years. This year, as I reported in the autumn edition, we welcomed four new trustees who were elected onto the Board at the AGM. I would like, in this edition, to take the

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email or post your contact details, including full name, address, telephone/mobile numbers, and email address, to Alison Sharpe at the Institute of Psychiatry, De Crespigny Park, Denmark Hill, London SE5 8AF, or at Alison. Sharpe@kcl.ac.uk. Please quote: MND Thumb Print. Your email or letter must reach Alison by 24 March 2010. Please make it clear if you wish a family member or carer to accompany you and include their details too. The Neurodegenerative Disease Research Open Day will be held at: The Institute of Psychiatry, De Crespigny Park, Denmark Hill, London SE5 8AF, on Saturday 24 April 2010 from 9.15am to 4.30pm.

opportunity to express my grateful thanks to Helen Clifford-Jones and Dr Cameron Wilson, both of whom retired from the Board upon the completion of their terms of office. Their commitment and contribution to the Association, during their periods of service to the Board, have played a major role in the Association’s progress. The Association is always interested in hearing from people who have the skills and desire to contribute to the Association’s growth and development. Within this edition of Thumb Print, is an article about the rewards of being a trustee, the capabilities and commitment required and how you can get further information about this vital role. Finally, I return to a recurring theme for his column; the recession and the effects it is having on charities in general and the Association in particular. Whilst there is some evidence that we have turned the corner and some signs of recovery can be seen it is important to remember that, in an economic downturn, charitable giving is one of the last areas to recover. Relative to many charities, the Association remains in a sound financial state and we must all work hard to ensure that this remains the case. Plans are in hand to ensure that we are even more efficient in the way we operate in order to continue spending the most possible on research for a cure and on the vital care services we provide. Alan Graham Chairman, board of trustees

An emergency text (SMS) service has been launched as a new addition to the existing 999 and 18000 services available in the UK. In an emergency, individuals can send a text message which will be connected to 999 through the Text Relay 18000 service. A relay assistant will read the text message to the 999 advisor. Their reply will then be sent back to the individual as a text message. To use this new service, you must register your details first. This can be done online or via your mobile phone. Register online at: www. emergencysms.org.uk/registering_ your_mobile_phone.php Alternatively to register via text: l l

l

l

Send the word ‘register’ in a text message to 999 You will then receive the terms and conditions in two text messages When you have read the terms and conditions send ‘accept’ in a text message to 999 You will receive a text message telling you that your mobile phone is registered or if there is a problem with your registration.

“Having this facility gives peace of mind, not only to me, but also to Margaret knowing that I can now contact the emergency services and make them aware what and where the problem is.” Hal Bailey, who is living with MND


MBE for MND fundraiser  A fundraiser who hasn’t let living with MND get in the way of him raising over £50,000 has been recognised with a New Year Honour.  Mike Findley from Marske-bythe-Sea, Redcar, was diagnosed with

MND in June 2005. The former Mayor of Redcar and Cleveland and a retired postal worker, has been tirelessly raising money to advance MND research ever since he received his diagnosis. To date his MND Fund, which was launched in September 2005 has raised £50,765. His fundraising efforts range from concerts, football “I got a letter six matches, charity dinners and weeks before the donations from audiences honours were who attend his ‘Living with MND’ talks. Generous announced...but individuals and organisations it was really have also donated to his difficult keeping it fund.  Mike says: “I got a letter six quiet.” weeks before the honours were announced and I was over the moon but it was really difficult keeping it quiet. It’s a great honour and I couldn’t have achieved it without the support of my family and friends. “I have been doing fundraising throughout my career and I have always had wonderful support from my family

Major funding into MND research A major new £4.6 million research initiative involving leading MND researchers has been announced by the Wellcome Trust and the Medical Research Council (MRC). It has long been suspected that similarities exist in the way nerve cells degenerate in different neurological diseases. Several recent discoveries suggest that this is particularly true for MND and a form of dementia called fronto-temporal dementia (FTD) which both have abnormal deposits of the RNA processing proteins TDP43 and FUS. Building on his recent discovery of TDP-43 and FUS gene mutations in MND patients, Prof Chris Shaw, based at King’s College London, is leading an international consortium of researchers to develop a series of new disease models that will mimic key features of MND and FTD in the laboratory. “Recent discoveries have placed these RNA processing proteins ‘centre-stage’ in both MND and FTD,” explains Prof Shaw. “RNA processing is vital to cellular function and survival,

as it governs the manufacture of all proteins which are the building blocks of all cells. As our nerve cells are built to last us a lifetime, any disruption of this process will have damaging long-term consequences. “We are extremely pleased to have received this grant. The new disease models we develop will help us to understand the biochemical events that initiate the degeneration of nerve “This is a wonderful cells in these disorders and will be used to accelerate example of drug discovery.” scientists from Prof Colin Blakemore, different disciplines our president and one of coming together...” the UK’s most respected scientists, welcomed the announcement: “This major grant from the MRC and the Wellcome Trust is another indication of the recognition of the

and friends.”  One of Mike’s most successful fundraising events is his annual Walk to d’feet* MND which takes place every summer during MND Awareness Week. Now planning his fifth Walk to d’feet* MND, Mike is hoping the 2010 event will be bigger than ever.  Mike’s passion for charity fundraising began when he was 16 and then continued during his years as a postman in south west London and then during his time at Redcar Delivery Office. Mike’s term of office as mayor ran from May 2008 to May 2009. During this year he raised £12,000 for four charities including the Willie Maddren MND Fund and North East Air Ambulance.  Kirstine Knox, our chief executive said: “Mike’s achievement is fantastic. He is an inspirational figure who has not let living with MND stop him from making a difference. I am delighted that Mike has been acknowledged in this way.”

importance and broader relevance of research on MND. “The discovery of a number of genetic mutations that underlie the rare inherited forms of MND could help us to understand common, non-inherited forms of MND but also other degenerative diseases of the nervous system. It is wonderful to see this concentration of funding aimed at understanding the origins of these terrible diseases.” Dr Brian Dickie, our director of research development, added: “This is a wonderful example of scientists from different disciplines coming together to work on a common problem. The collaborative thinking of the researchers has been made possible by the collaborative funding from the UK’s major medical research funding bodies. This research could make major inroads into understanding MND.” The Wellcome Trust funds innovative biomedical research, in the UK and internationally, spending over £600 million each year. The MRC invests in world-class scientists to enable them to tackle research into the major health challenges of the 21st century.

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news said: “I’m really honoured to have won such a prestigious award especially as this was a labour of love. It came with many months of faith and hard work from Bare Films and everyone else that worked on it. Sarah’s Story has worked wonders in creating profile about this evil disease.” In December, thanks to the support of thousands of voters from across the globe, Sarah’s Story took the award for the best ‘Social media ad campaign’ in the Mashable 3rd Annual Open Web Awards. The Mashable Open Web Awards is a highly influential, international social media award scheme that covers major innovations and achievements in social media.

Encouraging results from trial Researchers have presented the encouraging results of a Phase 2 clinical trial looking at the safety and tolerability of a drug called KNS-760704 in ALS patients. ALS (Amyotrophic Lateral Sclerosis) is the most common form of MND. The two-part Phase 2 trial found that KNS-760704 was safe and well-tolerated in ALS patients for up to nine months.  The trial only took place for nine months. The trial results also showed trends suggesting the potential for reducing the rate of decline in the functional capability of patients, for example, how far people can walk unaided, lifting objects, dexterity in eating; and survival. The researchers emphasised that KNS-760704 is still in the early days of development for patients and that further testing in a large, longer-term, carefully-monitored Phase 3 trial is needed to establish the necessary evidence that the drug is both safe and effective for ALS patients. Dr Belinda Cupid, our research manager explains: “Phase 2 clinical trials determine the size of the dose, the timing of the dose and how the drug is to be taken for the next phase of testing. “Although Phase 2 testing provides some indication of a drug’s ability to treat a disease, the number of patients involved at this stage is much too small for the findings to be relied upon.  “Phase 3 clinical trials are important as they aim to show whether or not the drug actually has a beneficial effect on patients. This stage of testing will usually involve hundreds of patients which is enough to allow a reliable assessment of the drug’s effectiveness. Phase 3 results will determine whether or not a drug is to be approved to treat a disease.” Phase 3 testing of KNS-760704 in ALS may begin in mid-2010 at sites in Europe and North America. If you are affected by MND and would like to know more please contact Tom Petzinger at Knopp Neurosciences Inc at tom@knoppneurosciences. com.

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Sarah’s Story: campaign update

Since we launched Sarah’s Story back in January 2009, our campaign has significantly helped to raise awareness of MND by reaching diverse audiences who in many cases had not previously heard of the disease.

The campaign has focused around our 90-second advert – the first ever UK broadcast advert created to raise Since our last awareness of the campaign update disease. It features Sarah Ezekiel who we’re pleased to report that Sarah’s was diagnosed with MND nine years ago Story has scooped when she was 34, and powerfully conveys two awards. the emotional and physical impact of receiving a diagnosis of MND. Award-winning Since our last campaign update we’re pleased to report that Sarah’s Story has scooped two awards. In November, our powerful advert won ‘Best Crafted Commercial 2009’ at the BTA Craft Awards in London. Jim Weedon who directed Sarah’s Story, and who along with his colleagues from Bare Films provided his time, expertise and resources free of charge,

Cinema advertising One year after its launch, we are now bringing our campaign to a close by executing one final push of awareness-raising activity. For a four-week period in January and February (beginning 15 January), we are showing Sarah’s Story in cinemas in major towns and cities across England and Wales. The cinema showings are thanks to the generous support of Pearl & Dean who kindly helped us with the launch of Sarah’s Story in January 2009 with a two-week cinema advertising period. Because our hard-hitting advert conveys the powerful emotional and physical impact of receiving a diagnosis of MND, we have been doing our best to let people living with and affected by MND to know about the planned cinema advertising. We have been working with our branches and groups and Association visitors to inform people of the cinema locations, dates and films where Sarah’s Story is being shown. The latest information is also on our website at www. mndassociation.org/sarahsstory Although we are bringing Sarah’s Story to a close, our campaign will continue to run as it has a significant online presence. It’s still a very powerful tool to educate the public and professionals about the devastating nature of the disease; and to raise money for MND care and research. In the spring issue of Thumb Print we will be providing a full round up of the success of Sarah’s Story and we will be introducing our new campaign for 2010/11.


Celebrity news Denise Welch and Tim Healy’s annual charity ball raised a spectacular £60,000 for the MND Association and The Gem Appeal. This year’s ball had a spooky theme with Lancashire County Cricket Club transformed into ‘Healy’s House of Horrors’. Celebrity guests included Denise’s colleagues from Loose Women and cast members from Waterloo Road as well as stars from Coronation Street and Emmerdale. The entertainment included a host of stars performing numbers from the Rocky Horror Show and a fabulous performance from ‘80’s icon Toyah Wilcox. Ashley Morgan spoke once again about living with MND. Her graceful and witty speech won her a standing ovation from the 800 strong crowd and prompted furious bidding for the auction lots. Organised by Julie Arnold of Entertainment Today the ball has become the highlight of the Manchester festive calendar. Our huge thanks to Denise and Tim for their continued support of the MND Association and to all who worked so hard on the event.

Comedian Stewart Lee faced the challenge of the big black chair and a grilling from John Humphrys when he appeared on Celebrity Mastermind. Stewart chose as his specialist subject the avant garde musician Derek Bailey who died from MND in 2005 nominating the MND Association as his chosen charity. The show aired in early January on BBC One. Stewart is the co-creator of Jerry Springer The Opera and an acclaimed comedian and writer whose most recent series Stewart Lee’s Comedy Vehicle aired last year on BBC2. More details about Stewart and his current tour can be found at www.stewartlee. co.uk and for more information about Derek Bailey see http://en.wikipedia. org/wiki/Derek_Bailey

Tim Healy and Denise Welch suitably attired for a fangtastic ball!

Ryan Giggs supports his old team mate Former England schoolboy footballer Del Deanus, who has self-published a book about being diagnosed with MND, travelled to Manchester to meet up with former team mate and BBC Sports Personality of the year Ryan Giggs.

An outstanding youth footballer Del played in the same England schoolboy team as Ryan Giggs...

Del was just 34 when he was diagnosed in February 2008. Since then he has married his girlfriend, Emma, continued to manage a semi-professional football club and is about to become a father for the first time. He has written Memories Never Die about his life and facing up to a premature death.

An outstanding youth footballer Del played in the same England schoolboy team as Ryan Giggs and represented Tottenham Hotspur as schoolboy and youth player. He was at Spurs during the era of Paul Gascoigne, Gary Lineker and Terry Venables. Del said: “My prognosis means I probably

Del Deanus (centre) with Ryan Giggs and Nick Barmby

won’t be around to see my child grow up so I hope the book will be a way he or she can learn more about me when they are older.” Profits from the sale of the book will go to the MND Association. For details see www.lulu.com/content/paperback-book/ memories-never-die/7772583. Del’s blog is at http://delsstory.blogspot.com/

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palliative care

Removing the mystery of palliative care Mike Hardy, who is living with MND, overcame his pre-conceptions and found himself in a supportive community at his local Macmillan Unit. “When I was diagnosed with Primary Lateral Sclerosis (PLS) almost seven years ago my regional care development adviser (RCDA) suggested that I might benefit from visiting the local Macmillan Unit,” says Mike. “Initially the prospect worried me, but I decided that I should be open-minded. I overcame my preconceptions and found myself in a supportive community that provided much needed ‘joined up thinking’. “I later found that many people shared my concerns and I hope that the following interview may clear away some of mystery surrounding the area of palliative care.” Here Mike interviews Dr Ros Pugh, a consultant in palliative care, at the Macmillan Unit in Christchurch. Q How would you define palliative care? A Palliative care recognises that not all illnesses can be cured and that for some conditions the focus needs to be on symptom control and quality of life. All health care professionals need to be capable of caring for patients with terminal illnesses and there are specialist

Mike Hardy

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Palliative care: friendship and laughter

teams, mainly based in palliative care units or hospices, with experience and expertise to help with the more difficult problems for patients with terminal illnesses. We aim to look at the whole picture and take into account the needs of both the patients and their families and carers. The Macmillan Unit aim is for people to live as well as they can do until they die. Q Many people associate the words Macmillan Unit, or hospice, with terminal illness. What services and help can you offer to someone living with MND? A Over the years the NHS has learnt that with some conditions it is important to establish early contact to ensure that things go well over time. In the Poole and Bournemouth area there are close working links between the neurologists, palliative care teams and the Motor Neurone Disease Association. We work with a multi-disciplinary team which includes occupational therapists, physiotherapists, speech and language therapists and dieticians as well as doctors, nurses, chaplains and volunteers. We hope to get to know patients with MND and to be able to advise

“The Macmillan Unit aim is for people to live as well as they can do...”

them in a timely fashion in order to help maintain their quality of life as much as possible. We also strive to improve symptom control as much as possible. Above all we want people to feel supported and safe. We have a lot of experience of looking after patients with MND as they approach end of life and do all we can to provide good quality care and sound advice. Some patients are admitted to the Macmillan Unit for symptom control or at the end of life. The unit has 20 beds and hopes to be able to admit people at short notice. It is not a long stay unit for patients with a stable condition. Q What could someone expect to experience in a visit to the day centre? A The day centre at the Macmillan Unit is open for four days a week from 9.30am until 3.30pm. Patients normally come for one or two days a week. It is helpful if patients can arrange their own transport but transport is available if it is needed. We aim to offer a day focussed on relaxation, friendship and laughter with art and crafts, aromatherapy, a decent lunch, tea and conversation.


There is a warm, friendly welcoming atmosphere. Many people are anxious when they first visit but on the whole, most find it reassuring to have the Macmillan Unit there as a backup. Three mornings a week a doctor is on hand at the day centre to address any medical problems. Day centre staff is an important part of the palliative care service and will refer individuals on to other parts of the service as required. They also keep GPs and district nurses informed about what is happening. There is an opportunity for assessment by the physiotherapists, occupational therapists, speech and language therapists and dieticians whilst attending the centre. Q What outreach support is available through the Macmillan Unit? A There is a team of palliative care sisters (Macmillan Nurses) who stay in contact with patients in their own homes. Most patients will get to know one or two nurses particularly well.

They will review patients at home or in the day centre as required and all patients have a telephone number so that they can contact the palliative care team at any time. The occupational therapists and physiotherapists are also happy to carry out assessments in the community, particularly with advice regarding mobility and equipment. We have strong links with local nursing homes and for patients whose home is now a nursing home we aim to maintain contact and support them there.

Palliative care

to MND and believe this is critical if the strategy is to be implemented effectively.

“We aim to offer a day focussed on relaxation, friendship and laughter...”

At the MND Association we continue to work at local, regional and national levels to improve the quality of life and achieve dignity in death which people with MND need and have a right to expect, regardless of where they live. The Government’s End of Life Care Strategy announced in 2008, seeks to promote high quality care for all adults in England at the end of life. We are calling for greater attention

Alexander Technique James Shaw, who is living with MND, talks about his experience of using the Alexander Technique. I was diagnosed with MND in March 2008 – a shock because the symptoms only seemed slight to me then. Now I can still walk with a stick, but only briefly and slowly. Coincidentally I had begun having one Alexander Technique lesson a week in January 2008 – a Christmas present from my wife because she thought I seemed run down. I had never heard of it, but I had more weekly lessons until May 2008, and I’ve loved carrying on with it since the lessons. It’s obviously no cure for MND, but it’s a way of making my body more comfortable, as it eases the muscles and helps me use them better. A vital, but not the only, part is to lie down on my back for 10 to 20 minutes in a specific way, and concentrate on releasing my muscles from the neck through the body, all the way down to the feet. The only exercise it requires is

More information Our Standards of Care define current best practice in care for people living with MND. www.mndassociation.org/for_ professionals/sharing_good_ practice/standards_of.html

breathing. It immediately removes pressure and makes me very comfortable lying down, and I can walk and use my muscles more easily when I get up. I do it for 20 minutes after getting dressed and before breakfast and usually three or four more times a day eg when I’m most uncomfortable, or just before I go out – a total of over an hour a day. I would be a lot less mobile without it. At the lessons, I also learnt other very helpful ways to use the muscles more easily and comfortably - when getting in and out of a chair, walking, and just sitting in a chair. I understand that it was devised by a disabled Australian man (sorry – no prize for guessing his name!) about 100 years ago, and it has spread to many countries since then. I suggested it to a friend with arthritis who has also found it very useful to ease pressure. I appreciate that it may not suit everyone, but it works well for me.

End of life strategy – Department of health www.dh.gov.uk/en/ Publicationsandstatistics/ Publications/ PublicationsPolicyAndGuidance/ DH_086277 MND Connect Telephone: 08457 626262 Email: mndconnect@ mndassociation.org

Fact The Alexander Technique is best described as a practical method for improving ease and freedom of movement, balance, support and co-ordination and is thought to work through re-establishing the natural relationship between the head, the neck and the back. While there is a lot of evidencebased research to support the effectiveness of the Alexander Technique for certain illnesses and conditions, this does not include any research into the possible benefits for people with MND. Therefore, we strongly recommend you seek advice from your neurologist before embarking on any therapies or treatments.

More information: The Society of Teachers of the Alexander Technique 1st Floor, Linton House 39-51 Highgate Road London NW5 1RS Telephone: 0207 482 5135, Website: www.stat.org.uk MND Connect Telephone: 08457 626262 Email: mndconnect@ mndassociation.org

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personal experiences Influence a change in care services Do you spend several hours a day caring for an adult aged 18-65 who is living with MND? Would you like to influence a change in services that would allow carers to take a break? If the answer to both of these questions is ‘yes’, King’s College, London would like to hear from you. The department of health has commissioned King’s College to find out about carers’ needs for, and experiences of, replacement care services (also known as respite care). To find out how you can get involved please contact David Williams, on 020 7848 5418, email kclcarestudy@kcl.ac.uk or write to (there is no need to use a stamp): Freepost RRLJ-JXEA-HYAS LTNC Care Study King’s College London Palliative Care, Policy, and Rehabilitation Weston Education Centre Cutcombe Road, London SE5 9RJ More information can be found on the King’s College website, www. kcl.ac.uk/schools/medicine/depts/ palliative/arp/eval/carers.html

Telling it as it is The reality of living with MND Keeping spirits high Nineteen-year-old Emma East writes movingly of her mum Gwen Godward’s rapid decline before her death from MND in November, aged just 48. My Mum was diagnosed with MND in August this year. She had been tripping and was finding it hard to walk. As a family, MND was our first thought as my grandpa died from the disease in 1993. Mum was always a very active person, cycling everywhere she went and she was also a catering manager, so was always on her feet. At first Mum didn’t seem to be deteriorating quickly at all and the doctors said she would have a few years, at least. Unfortunately, on the way to a hospital appointment she broke her foot and, from then on, was unable to walk. By the time the cast came off, she had deteriorated to the stage when her legs would no longer respond. Other than this though, Mum’s hands were the only other weakened area. As we were two floors up, Mum was unable to leave the house after this as she wouldn’t let anyone carry her

Drug trial still recruiting The organisers of the lithium carbonate clinical trial have extended their deadline for recruiting participants to 31 March. This means that people with MND still have the opportunity to join the trial, which aims to provide doctors with vital evidence about this potential treatment. The trial is open to people with ALS (the most common form of MND) who: l experienced their first symptoms between six months and three years ago l are taking riluzole (Rilutek) but are not already taking lithium l are not using non-invasive ventilation l do not have a PEG. Nine trial centres across the country are looking for participants. For further information, please contact MND Connect on 08457 626262 or at mndconnect@mndassociation.org

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Gwen Godward with her daughter Emma East

down the stairs. Social services said they would move her to a care home but didn’t get round to it in time, which meant that for the last three months of her life, Mum was stuck inside. She kept her spirits high throughout and everyone was amazed at how strong she was being, although we all knew this wasn’t how she really felt. Mum was such a caring person though and didn’t want anyone to worry. Three weeks before her death she fell ill with a chest infection and was taken to hospital where she stayed. Her deterioration then quickened beyond explanation – every day something else was worse, her speech, her use of her limbs. She was helpless. She sadly lost her life on November 12, 2009. Her brother had come down from Scotland to see her and was two hours too late. I wasn’t there when she passed but the nurses have told me all she said was ‘Thank you’ over and over again and asked for her leg to be raised. My only regret is not spending more time with her when I had the chance. She was such a caring person and didn’t deserve it, nobody does. I just hope that one day soon a cure will be discovered.


A Family Affair When Paul Wilkinson was diagnosed with MND in 2006 he was determined to be positive about the rest of his life – and his granddaughter Charlene intended to be a big part of it.

Paul Wilkinson with his grandchildren Charlene and Steven

Unbeknown to her mum, 20-yearold Charlene dropped out of her social work degree course and came home to announce that she wanted to be Paul’s carer. “I came home and told my mum that when granddad needs to be looked after I want to be the one to do it,” says Charlene, from Swindon. “She wasn’t happy at first and told me that he would never agree to it, but it’s something I wanted to do and I enjoy it.” Paul, 62, is full of praise for Charlene, who did a sponsored sky dive with her younger brother Steven raising over £2,000 for the Association. “I warned her what looking after me might involve in the future but she still wanted to do it. Both Charlene and Steven are great kids – I was fortunate enough to spend a lot of time with them when they were growing up.” Paul firmly believes that a positive

“Gil wanted to give something back and was asked to start a branch website.”

Gil Rice Gil Rice’s widow Betty pays tribute to the wonderful man she shared her life with. He gained great pleasure from his involvement in the local branch and died from MND in May. Gil lived with MND for 18 years although it was eight years before the disease was diagnosed. It started when he was 53 and five years later he had to retire as he was a lecturer for Siemens and was required to travel all over the UK and abroad. There were so many tests but no positive result but, eventually, when he had trouble swallowing and speaking he was sent to King’s College Hospital in London. There PLS (Primary Lateral Sclerosis), a rare form of MND, was diagnosed. We weren’t alone as we joined the East Dorset & New Forest Branch. We had an Association visitor, who gave us great support. Then, when monthly Get-togethers were arranged for those living with MND and their carers, we were able to meet others in a similar situation. Gil wanted to give something back and was asked to start a branch

attitude helps him live with his MND and the day-to-day problems it causes. He has written a 52-page booklet of positive thoughts and verse. You Whose Day This Is, Get Out Your Rainbow Colours and Make It Beautiful is a typed collection of thoughts and musings on how to get the best out of life. He is happy to send a copy to readers who may be interested and is currently at work on his next volume. Paul can be contacted on 01793 694111.

website. This was in 2002 and in 2004 he was awarded a commendation OSCARR for the website. Gil was webmaster for seven years, a job he really enjoyed and one requiring many hours on the computer. He also took over the editorship of the branch newsletter. At the Get-togethers Gil always had

Gil learned how to paint

a smile and, even though he couldn’t speak except via the Lightwriter, he was an inspiration to others living with the disease who could see that Gil still had a good quality of life. Gil was invited to go to Lewis Manning Day Centre and he agreed mainly because he felt I needed a break. He always thought of me before himself. As it turned out, it transformed his life. He really enjoyed his two days a week there and the staff were so caring. He learned to paint there and such was the quality of his work that some of his paintings were on public display in Poole Library and in the branch MND Art Exhibition in 2008! Despite his battle with MND he enjoyed life and we managed to have holidays in Europe every year. MND brought us even closer to one another. At the end, Gil died from a heart attack so he was spared the final stages of the disease. He fought the battle bravely to the very end and kept that special smile. I am so proud to have been his wife.

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personal experiences Chris’ grand tour Unsure how quickly his MND would progress, Chris Glover decided it was time to take all the holidays he ever dreamed of…and fulfil an ambition or two in the process. I had always believed, with any serious or terminal illness, there were two ways of dealing with it – either tackle it head on and fight it every inch of the way, or curl up and die. This belief was well and truly put to the test in December 2007 when an earlier diagnosis of MND was confirmed. Not being a ‘curl up and die’ person, I sat down with my partner Diane and we decided to do as much as possible together while we still could. As we both enjoy travel and holidays, this seemed a good use of that time. We embarked on a catalogue of trips, not knowing how much time we had left. We both felt the need for sunshine, so our first trip in January 2008, was a last-minute, all-inclusive fortnight in Lanzarote. This proved a much-needed tonic for both of us. We also met a wonderful couple and we still remain friends.

Chris Glover with friends living life to the full

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My next trip, in early June, presented a bit more of a challenge, as by then I could walk only with the aid of a stick and the trip was a tenday motorcycle tour of Germany and back! As my sports-bike had become virtually impossible to ride due to my worsening “You may be thinking condition, I changed it for a by now that life had more suitable bike, become one long bought a foldup walking stick, holiday – you would packed it on my be correct and what bike and off I went! With the help of my is wrong with that?” brother and sisterin-law and others on the tour, I had a fantastic trip, even fitting in a lap of the Nurburgring to boot! As things turned out, this Germany trip became my ‘stag party’ as, in February, leap year day to be precise,

Diane proposed to me. So the next trip we made together was down the aisle! We had a wonderful wedding day with family and friends, despite the weather trying its best to dampen everyone’s spirits. The following week we were off on our travels again, visiting Diane’s sister and her family in Vancouver for a three week honeymoon. You may be thinking by now that life had become one long holiday – you would be correct and what is wrong with that?! No sooner were we back from Vancouver, than we were off to Greece for a two-week holiday with Diane’s son, daughter-in-law and our two grand-daughters. During the winter of 2008 and early 2009, we had several weekends away by coach, but these only served to pass time until our biggest adventure of all! In March 2009 we embarked on what was for me the holiday of a lifetime. We flew to Nairobi, and then set off for a four-day safari on the world famous Masai Mara game reserve. I did wonder at times if we had finally ‘bitten off more than we could chew’ as by now I was virtually confined to a wheelchair. However, thanks to the dogged determination of Diane and the helpfulness of the wonderful Kenyans and people we met on the trip we had a fantastic and memorable time. After seeing all the “Big 5” plus 30 or so other animals and 35 different species of birds we left the Masai Mara and flew to Mombasa for 11 nights relaxing on Mombasa beach overlooking the Indian Ocean. This led to me achieving a life-long ambition! I had always wanted to swim in the Indian Ocean, but after a discussion with friends, discretion became the better part of stupidity and a paddle in the sea became the sensible alternative. So with a lot of help I went down the steps and across the 20 yards of sandy beach into the beautiful warm waters of the Indian Ocean! With another trip to Vancouver recently completed, my message to anyone recently diagnosed with MND should be clear – it doesn’t have to be the end of the world! For me it started a period in my life that I’ve enjoyed immensely. It’s been a time in which I also have achieved many of my life’s goals. And you never know - you may even get a wonderful, gorgeous woman proposing to you!


Transforming my life Mark Glover was diagnosed with MND in November 2007 and here he talks about how the insidious nature of the disease has totally transformed his life. Five months after getting the devastating news and being told that my life would be significantly short I gave up work and stopped driving. Shortly after that I also had to give up cycling after a painful accident when my arms gave way.  For me, MND has been a topdown experience. It started in my shoulders and moved down my arms during the first year so that my upper limbs are now no more than dead weights. The loss of my arms has been a cruel blow as we depend on them so much to interact with the world around us. It has meant giving up the joy of photography and the pleasure of reading a book. On a more fundamental level, I have lost the ability to wash, dress and even feed myself. During the second year the disease began to spread into my legs and

Mark Glover

as the months went by the distance I was able to walk from my house diminished. Now all I can do is walk small distances “I am now dependent around the house. If I leave the house on voice recognition I have to take a software, kindly wheelchair with supplied through the me. Throughout the time I’ve had MND Association/ the disease my AbilityNet partnership.” respiratory system has been in decline so that now I am on the bottom end

of OK. Fortunately my speech and swallowing have remained unaffected although I do take frequent pauses when speaking now and I cannot raise my voice as loud. My hands are getting really bad as well and I’ve lost the ability to even write my own name or type a sentence on my computer’s keyboard. I am now dependent on voice recognition software, kindly supplied through the MND Association/ AbilityNet partnership. I’d be lost without it.  It’s been said that the care and support you receive can be is a bit of a postcode lottery, but in my two-year journey I’ve met a lot of kindhearted people. From the carers who look after me on a daily basis, to the Remap engineers who devise ingenious solutions to everyday problems, to my helpful occupational therapist who has done a great deal to ensure that I get equipment in a timely manner.  I maintain a blog partly so that my family and friends are kept up-to-date, but also to share my experiences and raise awareness of what it is like to live with this devastating disease. Take a look at http://fightingmnd.spaces.live. com/ 

Amazing Grace Jack Sorrell writes movingly about his son Christopher and Christopher’s partner Grace, whose devoted support enabled him to remain at home throughout his illness. In the spring of 2003, I returned home after five glorious weeks in Australia. They were spent at the recently completed home that my son Christopher and Grace, his soul-mate of 25 years, had designed and built on the slopes of Mount Macedon, near Melbourne. Within weeks, Chris, a graphic designer, phoned to break the news that the loss of control of his legs had been finally diagnosed as the onset of an aggressive type of MND. I returned to Australia for six months during which we did as much together as possible – outings, shows, exhibitions and events. At this time he was still speaking normally and was able to operate his electric wheelchair. I made

a sad return to the UK. A few months later I flew out to find a remarkable change. The cruel illness had taken its toll. Chris no longer had speech, nor could he take food by mouth. Communication was only possible by laser board “Chris has moved and all movement on to rest in peace required assistance. Chris could still read but lives on in with the help of an automatic page-turner. our hearts, minds He was as mentally and memories.” alert as ever and would still raise a chuckle and smile at some joke or humorous remark – a great patient. In the early hours of December 29, 2005, Chris’ earthly life, well-lived

but all too short, came to an end. He was only 53. A large gathering of family, friends and colleagues met for an informal service and his beloved Grace gave a moving elegy. Her devotion, love and care during Chris’ illness was inspirational. She was determined that Chris should remain at their home overlooking the Bay at Port Melbourne, and this she achieved. The assistance, advice and kindness shown by hospital staff, visiting nurses, carers and the local MND Association was greatly appreciated. Chris has moved on to rest in peace but lives on in our hearts, minds and memories. We never forget. Love is immortal.

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international symposium

Experts gather at International Symposium Delegates form new collaborations during lunch break

The International Symposium on ALS/MND is organised every year by the MND Association. It’s now in its 20th year and is the largest medical conference on MND. Our symposium is regarded as the premier event in the international MND research calendar as it represents the energy and dynamism of the MND clinical and research communities. In 2009 it was held in the city of Berlin in Germany from 8 - 10 December.

Insights Kelly Johnstone from our research development team kept us up to date with highlights and insights from the conference with her daily blog. With the added expertise and knowledge from Chris Lynch, regional care development adviser (RCDA) for Greater Manchester and Kevin Thomas, RCDA for North Wales, Kelly was able to report back from the clinical and scientific sessions with the latest news, explaining what this means to anyone who is affected by MND.

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Symposium begins Eva Luise Köhler, the First Lady of Germany and the patron of the German Alliance for Chronic Rare Diseases formally opened our symposium. She was then followed by Baroness Ilora Finlay, one of our patrons and a “...an uplifting lecture top palliative care consultant, on the difficult and who gave an emotive subject of uplifting lecture end of life decisions.” on the difficult and emotive subject of ‘end of life decisions’. Baroness Finlay argued how essential good palliative care is for people with MND and their families, and stressed that good communication and good listening is essential if professionals are to help patients.

Evidence for multidisciplinary care Our two RCDAs reporting back to Kelly were pleased to find that discussions involving multidisciplinary care were much more prominent at this symposium. Kevin Thomas explains: “This may be a sign that clinicians are accepting that they must work with other teams to increase the care and quality of life for people living with MND.” Evidence to demonstrate the effectiveness and necessity of multidisciplinary care for people with MND was presented. Chris and Kevin found it reassuring that Association efforts to achieve best practice in multidisciplinary care in the UK, now has more evidence to show it can increase the quality of care and the quality of life for someone with MND.

Modelling MND Models of MND allow researchers to study the disease in the lab. Prof Chris Henderson, a US MND stem


cell researcher, presented on the development of a new ‘in-a-dish’ human motor neurone model for MND. These motor neurones were derived from skin cells which were reprogrammed to generate intermediate stem cell-like cells called ‘induced pluripotent stem cells’, or iPS cells for short. This is a truly exciting prospect as studying the progression of MND in a human motor neurone can be directly related to what causes the disease in people. This model will also allow researchers to test future therapies to speed up the process of finding a new treatment for MND. Delegates also heard talks on the development of the zebrafish model for MND. As humans, we share 80% of our genes with the zebrafish and we have similar motor neurone systems. This allows researchers to study MND effectively in this disease model. In another session, Dr Roger Lemon explained how humans have a higher level of dexterity and therefore, may have a higher need to maintain the function of the motor neurones than other animals. He suggested that as other animals, such as rodents, do not have as refined motor neurone control as humans then we must be aware of this limitation when using animal models of MND. This generated huge debate amongst delegates.

Other highlights l A Phase 2 clinical trial of a drug

defined by religion. It’s about how we determine our meaning in life incorporating our own unique feelings and beliefs. Delegates were pleased that this subject was given a platform for proper discussion.

Final thoughts The symposium is about researchers and clinicians developing new working relationships and debating ideas to push research forward to a new level. Dr Brian Dickie, our director of research development, explains: “The real value of our conference is in bringing leading experts from around the “The symposium is world together under about researchers one roof and getting the knowledge that’s in and clinicians their heads out into the developing public forum. new working “During the lunches and coffee breaks you relationships ...” can almost feel the heat as new ideas are enthusiastically developed and new collaborations forged across the various scientific and clinical disciplines. “During one break, I had a discussion about the support and education of palliative care professionals, another about putting together a scientific workshop on new stem cell technology and another about performing muscle biopsies in dogs with a hereditary form of MND….all in the space of ten minutes! That’s what the symposium is about and why we organise it every year.”

Symposium 2009 lowdown l 865 delegates - a record attendance l 100 speakers from 18 different

countries. l The Symposium Abstract Book

is a must-have for delegates. An abstract is a brief overview of a researcher’s presentation or research paper, so the book is a compilation of every single symposium presentation. The abstract book is a blueprint of the world of MND research at the time of the symposium, demonstrating exactly how far we have come in a year. You can read Kelly’s blog in full at www.mndassociation.org/ mysymposium by clicking on ‘highlights and insights blog’. Alternatively contact our research development team on 01604 611 880 or at research@mndassociation.org to request a paper copy.

called KNS-760704 was found to be safe – plans are being formulated to conduct a Phase 3 trial. (More information page 6.) l A particular genetic spelling

variation appears to bring forward, by almost a decade, the age at which a person develops MND. Researchers found that people with MND who carried this variation were on average seven years younger when they experienced their first symptoms compared to patients who did not have the variation. The variation also increases the overall risk of somebody developing the disease. l Spiritual care and meaning in life

were discussed for the first time at the symposium. Presenters argued that spirituality is not just

A motor neurone (Steve Gschmeissner)

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international symposium

MND Association funded research – thinking outside the box As an international leader in his field, Prof Giampietro Schiavo, a scientist at Cancer Research UK and University College London, was invited by the MND Association to give a presentation at the 2009 International Symposium on ALS/MND in Berlin. Isn’t it rather unusual for a cancer researcher to be working on MND? Thumb Print caught up with Prof Schiavo back in London to find out more about his pioneering MND research. “Different diseases all have one thing in common,” Prof Schiavo explains. “They involve something going wrong with cells in the body. If you have a good understanding of how cells function and malfunction, you can apply that knowledge to a variety of diseases. “In MND, we see the specific death of nerve cells and our aim is to prevent that from happening. But if you know how cells are being killed you might also be able to use that knowledge to selectively and specifically destroy other cells - which is exactly what cancer researchers are trying to do.” Such ‘cross-fertilisation’ of knowledge and ideas between scientists working in very different fields of research is frequently the way new advances are made. Through an MND Association research grant, Prof Schiavo has been collaborating closely with Prof Linda Greensmith - a colleague at University College London and one of the country’s leading MND researchers - to study the way in which essential nutrients and components are carried throughout motor neurones, known as cellular transport processes. Motor neurones are incredibly long. In connecting the spine to the muscles, some of them can be over a metre in length, yet their nerve fibres are so thin that they need specialised

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ways of moving nutrients and components around. Research studies on motor neurones grown in the lab show that when cellular transport processes are disrupted, the cells start to degenerate. However, it has not been possible to show that this also occurs in MND. Prof Schiavo’s team is tackling this challenge using state-ofthe-art technology which cancer researchers use to Prof Giampietro Schiavo in his lab visualise the movement of cancer cells. By adapting the technique, he has been able to develop a system that can monitor how quickly cellular ‘cargoes’ are carried along the motor neurones of SOD1 mice. “Prof Schiavo’s team is These mice tackling this challenge develop using state-of-thea highly characteristic art technology which form of MND, cancer researchers use to so it is possible visualise the movement to look for changes at of cancer cells.” different stages as the disease progresses. He has found that the disruption to the cellular transport process occurs long before the mice start to show any symptoms of MND, at a time when the connections between the motor neurones and muscles are still intact. Prof Schiavo elaborates: “The earliest changes seem to occur in

transporting substances from the muscle end of the motor neurone back up to the spinal cord. We know that transport in this particular direction - called ‘retrograde transport’ - is important in carrying essential ‘survival factor’ proteins. As the name suggests, if these survival factors are not being delivered in a timely fashion, then the neurones will start to suffer. “If we can show that changes in cellular transport occur early in MND in humans as well as mice, it might be possible to use this as an aid to quicker diagnosis. In addition, using new techniques developed in our lab, including motor neurones grown from mouse stem cells, we will be able to search for potential treatments to stimulate transport processes, in the hope that these may be useful in helping motor neurones to counteract the deficits caused by the disease. It is certainly a strategy worth pursuing.”


2009

marking our pearl anniversary Over the course of the year we have been marking our pearl anniversary. This anniversary has provided us with an excellent opportunity to reflect on all that has been achieved over the last 30 years and also to remember all those friends lost to MND and unite in our fight against it.

30th Looking back over 30 years In this, the last 30th anniversary souvenir edition of Thumb Print, Joyce Prince, one of our founder members, looks back over 30 years and gives her own account. “My husband John Prince had been diagnosed as having MND in 1973/4 and had spent over three years looking in vain for help or information. In the early summer of 1978 he had a letter published in the London Evening paper asking for anyone who was interested in forming a self-help group for MND patients to contact him. “As a result the first recorded meeting in the UK of patients, relatives and friends interested in MND took place on 3 June 1978, when 25 people met together at 245, Popes Lane Ealing, our home to ‘discuss the formation of a society for MND patients’. Consultant neurologist at the Charing Cross hospital, Dr Frank Clifford Rose, who had responded to the newspaper letter and his senior registrar Dr Marek Gawel were there and spoke about the disease. “Members from the Muscular Dystrophy Group were also at the meeting. The MD Group was spending over £100,000 pa on research into MND. At the second meeting five weeks later it was agreed that there would be a motor neurone working party within the Muscular Dystrophy group and that MND patients should be encouraged to join their local Muscular Dystrophy group local branch. “The Muscular Dystrophy Group was supportive and helpful but by March 1979 it was clear that the needs of MND patients were quite distinct from Muscular Dystrophy (concerned with children) and that a completely separate Association was necessary.

A national Association is formed “In February 1979 Roger and Jenny Carus had set up a support group in Nottingham and the two groups heard of each other and met, together with a third group from Scunthorpe, to form the National Association in October 1979. A deep, if narrow hole had been identified in the statutory services. Ignorance about MND was profound. The number of patients at any one time was small and therefore of minimal concern to the Government. There was very little money for research so the medical profession was impotent to care for people living with the disease. Expectation of life from diagnosis was fairly short so those affected had little time or energy to campaign.

Founder members, Jim Tew and John Prince

Aims and objectives agreed “Aims and objectives were agreed upon at the second meeting on 17 June 1978 and officers appointed, namely, John Prince chairman, Kathy Tither, secretary and Jane Betterton treasurer, “Two short term and and later by Jane’s immediate aims father, Don Hatch who remained a stalwart were agreed upon of the Association at that meeting...” in several different capacities till his death in 1997. “Two short term and immediate aims were agreed upon at that meeting. The first was to help patients and relatives with problems that arise and the second was to collect and disseminate information. A newsletter was agreed upon –

edited and largely written by Michael Tither, brother of Kathy (both from New Zealand). “The agreed long-term aim was to encourage and provide funds for research. For the first six to seven years almost all the meetings, including social events for all the membership, took place in private homes. Survivors remember those meetings as occasions of great hospitality and much laughter. There was also a lot of work going on and the skeletal foundation of the Association can be seen to be taking shape in the earliest months. Almost all members had full time occupations; some had young families. It was a very busy time.

Fundraising takes priority “Fundraising had to take priority. The MND Association bank account was opened on 6 July 1978 with £41. Relatively small amounts of money came from coffee mornings, jumble sales and so on. A £30 donation came in April 1979 from Prof Stephen Hawking (who had been a patron since November 1978) as ‘part of the

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2009

marking our pearl anniversary

fee’ from ‘my interview on German TV’. Another donation from the same source came from a family musical event. Michael Tither put on several theatre/dinners in his large living room in Hampstead and with Dr Clifford Rose, was instrumental in achieving the first large corporate donation of £11,000 from the Daily Mirror. To receive this money the Association had to be registered with the Charity Commissioners. The National Association, was formed in October 1979. All research matters were, from that date dealt with by the National MND Association. The importance of developing a group structure was recognised. Southampton and Devon already had embryonic groups and there was a good bit of interaction between them and founder members. Alongside fundraising goes publicity. Paul Betterton, founder member, with MND appeared on Thames TV with Drs Clifford Rose and Marek Gawel in July 1979, almost certainly the first person living with MND to hit the screen. His parents Len and Peggy and his sister Lesley Ogden were tireless with both fundraising and publicity. MND T-shirts, the 100 Club (later taken over by Colin De’Ath) stickers and posters were some of their promotions. A small advertisement was placed in two national newspapers on a regular basis from late 1980. This was paid for by a friend of Colin De’Ath who was advertising manager of another national newspaper consortium.

A need for better services “Looking through papers of the early years no one could be in any doubt about the need for better services for MND patients. Within a few months enquiries arrived at the Tither and Prince households from Canada, Michegan, Illinois, France, South Africa and floods from both individual patients and health and social service professionals in UK. Drs

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A re-united moment as Joyce Prince and fellow founder member Ann Gretton greet each other

Clifford Rose and Marek Gawel were unstinting with help but there was virtually no evidence-based material to guide advice. Dr Gawel is recorded as saying in 1978 ‘a cure might only be two years away’. “A letter to Kathy Tither in February 1979 from a social worker in Tyneside had enquired about getting financial help to pay for a holiday. This was the very first request received. Help with holidays and providing information about other “It surely is organisations and sources necessary to of assistance (Disabled Living Foundation, Mary have a medical Marlborough Lodge, Possum patron to Users) was how things began. answer patients “Some neurologists were nervous, a few quite hostile, queries on about attempts to form an medical aspects Association. The thought of lay people setting up where of the disease...” professionals had failed aroused anxieties. From the outset however founders were clear on this point as a letter from John Prince to a correspondent in Illinois makes clear: ‘It surely is necessary to have a medical patron to answer patients queries on medical aspects of the disease which could involve laymen in both academic and ethical queries which they are not equipped to answer, either intellectually, or in the UK, legally.’ Our medical patron/

advisers at the Charing Cross Hospital appreciated, as some of their colleagues did not, that MND creates problems well beyond the medical ambit. The value of their professional and moral support in those early days cannot be overestimated. Funds for research, they also recognised, were more likely to be forthcoming from a patients self help group than from any of the major funding bodies. “Kathy Tither was secretary from the initial meeting in June 1978. She resigned early in 1980 as she was going to Mozambique. She was succeeded by Hillary Major (both had lost their mothers to MND). They did an enormous amount of work in establishing a membership list, dispatching promotional and informational leaflets to general practice premises, libraries and so on. They dealt with volumes of correspondence and often visited patients. They encouraged patients to contact their MPs, or, with their agreement, wrote on their behalf. “Angela Rumbold MP was a friend of Len and Peggy Betterton and it was hoped to build up a group of interested members. Alf Morris was Minister for the Disabled in the final months of the Labour Government, which gave place in May 1979 to the Conservatives under Mrs Thatcher. Reg Prentice then became Minister for the Disabled.


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marking our pearl anniversary

They had regular invitations to our public/social events though we were never terribly surprised to learn of their unfortunate prior engagements! No Government department contributed anything toward facilities for MND patients. “Visiting patients became an inevitable task for several founder members. Extremely distressing conditions often demanded attention with a view to mobilising some local voluntary or statutory help. “In May 1979 we learned of a research fund – then £2,000 – set up at St George’s Hospital in memory of Sir Hector McNeil who had died of MND the previous December. His widow became the first President of the Association. Barbara McNeil was a steely, resourceful, well-connected woman with many contacts whom she exploited for the benefit of the sometimes-faltering Association. Her generous gin and tonics and rippling laughter were always a boost to morale and she had a seemingly limitless capacity for loosening purse strings and smoothing ruffled feathers. “Jim Tew became a member via the Musclar Dystrophy Group, as he had been participant in a survey they were conducting. Both he and John Prince worked in research development organisations and this is where their great interest lay. Jim became chairman and proved a powerful advocate for research and was responsible with Dr Clifford Rose for getting the first International Symposium organised. This took place 5-7 July 1982 at the Medical Society of London. Jim’s report to the next London and Southern Committee meeting is recorded thus: ‘Approximately 50 leading neurologists and eminent specialists from related disciplines from all over the world attending had discussed the correlation between disease and surrounding and background... ‘The conflict of evidence had stimulated debate and might produce a change in thinking about a possible cause of MND: as yet nothing was available in the way of treatment or alleviating drugs...’

The first International Symposium The International Symposium had cost £11–12,000 and was the first of what was to become an annual event of great importance for everyone interested in MND. In the Autumn of 1981 Hillary Major resigned the secretaryship to go to Zimbabwe. (Another brain “By that time draining to Africa – some a national members began to suspect a plot!). Several other branches director with were starting up and the a permanent necessity for structural change office in was being discussed. A paid secretary – the first paid Northampton officer of the Association - was had been appointed as secretary to the London and Southern group appointed ...” with a salary of £2,500 p.a. “Mrs Kate White had retired from running her own business. She had been at some time Mayor of Aylesbury. Experienced, knowledgeable, efficient, patient and kind she was a stablising force at a turbulent period. Getting the Association organised nationally when demand was considerably outstripping resources created stresses and strains. Jim Tew and Colin De’Ath were by then on the national committee, though they remained members of London and Southern. Ian Evans, a young man with MND became chairman of London and Southern Group. “The appointment of two professional

patient care research officers (PCRO) by the National Committee to some extent relieved members of responsibility in that direction. In July 1983 Pam Emy, the PCRO for the southern part of England attended the London and Southern Group meeting and reported on her work. She had identified three major gaps requiring attention. 1) The lack of good ongoing support facilities for families 2) Provision of large and expensive items of equipment 3) Problems of terminal care. “By that time a national director with a permanent office in Northampton had been appointed and matters were in hand to create a centralised and professional organisation. “Not all founder members had survived for the three-and-a-half years outlined here, and fewer still have survived for 30 years! Many people, beside the few named, gave hours of thought to how best to grapple with the sea of unknowing. They read, wrote, discussed and argued, travelled, visited, shook collecting boxes, shared distress, got angry, spoke in a variety of public settings, appeared on television and radio, met regularly, sometimes to mourn, often to rejoice, always to try to move things forward. Things have changed. Much remains to be done.”

discomfort by buying larger “ Reduce underpants and knickers with an elasticated waist band. hands. Finding it difficult to keep “ Cold hands warm and struggle to put on

Throughout the year many of you kindly sent in some pearls of wisdom. We know how much knowledge you have built up through living with the disease and here we share your final 30th anniversary pearls of wisdom.

gloves? Try ski glove liners. These are just slip-on tubes of fleecy material, with no fingers and just a hole for the thumb to come out.

“ Use a button hook for shirts and blouses. a rucksack can be easier than “ Using carrying bags in the hand. thumb print Winter 2010 19


2009

marking our pearl anniversary

Lanterns for life To commemorate our anniversary, we sent out over 3,500 lanterns to volunteers, families and individuals affected by MND. Many of you held a lanterns for life event in your own home, surrounded by close family and friends, while others held larger events in public places. Margaret Moss, chair of the Reading and West Berkshire Branch describes the branch’s lanterns for life event: “It was a poignant and touching moment as the Scots Piper led the procession of people holding lanterns to the 30th event site. Close to a large conifer on the Englefield Estate the lanterns has been placed in the shape of a 30. “Our branch patron generously agreed that an area near the village of

Englefield could be the location of our lanterns for life event. We had wonderful speeches including a reading by actor Joss Ackland who very kindly attended the event and gave a reading. “Over 70 people arrived, many of whom we had not seen for some time and old acquaintances greeted each other in the gathering dusk. As the short speeches and reading were delivered tears were shed and hearts were full. One hundred lanterns commemorated the 30 years of the Association and we remembered all those we had known and loved with a moment of silence. A poignant and touching scene.”

Our ribbons Over 20,000 commemorative ribbons were requested during our special birthday year. Even though our 30th anniversary year is over we hope people continue to wear their ribbons to raise awareness of MND.

Your lantern for life events

Quotes “Our evening on 6 October was just super. We had 100 people here and we lit 100 candles in the shape of 30. They all said what a great night it was and some felt they were now able to move on after lighting a candle in memory of their loved ones.” Liz Nelson, West Dorset Branch “I held an event in Sandgate, Queensland, Australia in memory of my sister, Amanda, my dad Michael Nicolas Dias and my Aunty Margi – all passed away from MND.” Nichola Dias “Although it was only a few family members it was a good way to keep remembering my Dad.” Claire Bailey

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making MND matter

Make MND matter at the general election Politics. Love it or hate it there will be no getting away from it over the next few months as the country gears up for a general election. Irrespective of your political persuasion one thing is clear - the election provides us with a great opportunity to ensure MND is high on the political agenda. MND Association staff have been busy working behind the scenes on our general election campaign now for some months, preparing our election manifesto and holding meetings with influential MPs and councillors. We also had a presence at all three political party conferences in the autumn. Now ‘people power’ is key to ensuring our important messages are heard and that we win the backing of politicians - and that’s where you come in. The good news is we’ve made it really easy for all of our supporters to get involved in this important campaigning work so that you can really make MND matter at the general election. There are two main areas to our election campaign: a call for a National Strategy for MND and a drive to develop a supportive group of MPs in the new Parliament.

A National Strategy for MND There is currently no official national guidance on how to treat and care for people living with MND. We believe a National Strategy for MND is urgently needed to ensure people with MND receive the coordinated, holistic care and support they both need and have a right to expect from the NHS and social services, no matter where they live in the country. A National Strategy for MND would enable good practice to be rolled out, increase awareness and education, and provide the tool to ensure efficient planning and allocation, ensuring that services and resources are used as effectively as possible.

Our manifesto outlines the key areas of concern for people with MND

Our manifesto, to be launched early February, outlines the key areas of concern for people with MND and recommendations for inclusions to a National Strategy for MND to address these challenges.

Support in parliament As many as 300 new MPs could win seats in the new “We are eager Parliament as a result of the that all MPs are general election. We are eager that all MPs aware of MND are aware of MND and the and the key issues key issues for people living for people living with the disease. This will mean that they are able with the disease.” to champion the needs of people living with MND during their time in Parliament and influence future Government policy to ensure better care and services.

General election website

To make it as quick and efficient as possible for you to get involved we’re launched a special general election website: www.mnd2010.org Here you can download all the tools including proforma letters that you need to do the following: • Sign our petition calling for a National Strategy for MND (this will be presented to the new Government after the election) • Contact your MP and ask them to sign the Early Day Motion calling for a National Strategy for MND, and write to the Secretary of State for

Health, Andy Burnham MP • Contact your Parliamentary candidates and councillors and ask them to sign the pledge on our website • Ask to meet with your Parliamentary candidates and councillors • Share your experiences of MND with other visitors to the site. If you’d rather talk to us about our campaigning work please contact our policy and strategy unit on 01604 611842. We’re happy to post letter templates out to you.

Talking to canvassers It’s very likely you’ll receive a knock at the door from a politician canvassing for your support in the next few months. Make the most of the opportunity by: • Telling them about MND and your experience of it • Informing them of the lack of guidance for MND and why this is urgently needed • Asking them to sign the pledge for a National Strategy for MND.

Follow our campaign online In addition to our general election website you can also keep up-to-date with our work at mndcampaigns.wordpress.com and follow us on Twitter twitter.com/ mndcampaigns

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starting out young “Like so many people who volunteer for us, Julia started to help out because a family member was diagnosed with MND.”

Starting out young

Julia Hallet (right) with her sister Carol

An hour here or there or a more formal role? Our Association branches and groups are always looking out for new volunteers. And the personal rewards can be great as one long-term volunteer explains… As a youngster, Julia Hallett helped stuff straws with raffle tickets for an MND Association fundraising event. Now, over 20 years on, she is still involved with local activities in her home town of Cardiff. Like so many people who volunteer for us, Julia started to help out because a family member was diagnosed with MND. After her uncle David was diagnosed with the disease in 1986, her father - his brother Lyn joined the committee of the Cardiff Branch. “The whole family got involved because dad was helping with organising fundraising events,” recalls Julia, 32, who works at Cardiff University’s Business School. “I would have only been nine or 10 at the time and I remember spending ages stuffing straws for a fundraising stall!” Sadly, Julia’s uncle died aged 40 in 1989 but the family has maintained its commitment to raising both funds

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and awareness in the Cardiff area. Her dad is current chairman of the branch and she is the secretary. Julia put her Association involvement on a more formal footing by joining the branch committee in 2006 before taking on the role of secretary. “I went to university in Warwick and when I came back to work in Cardiff I found I had a bit of spare time. It seemed a good way to fill it. As dad is busy with the branch it keeps me in touch with him as well!” So how does she fit in MND Association commitments around her work and social life? “It’s not too difficult really so long as you keep on top of it. As secretary there is quite a lot of paperwork but I try and do it little and often. I’d say I probably spend a couple of hours a week on the admin and then there are meetings and events.” The branch committee meets every six weeks, with branch open

“As a youngster, Julia Hallett helped stuff straws with raffle tickets...”

meetings every eight weeks or so. “I sort the minutes and the agenda for the committee and then as a team we work together on ideas for events.” Julia is keen to point out that it is very much a team effort, that anyone considering volunteering will always have plenty of support and help from other volunteers and Association staff. “We get lots of help and support from each other and the professionals involved. Carol Thomas-Wyllie is our local regional care development adviser and we liaise a lot. She makes sure we hear of people recently diagnosed so that we can invite them to meetings and put them on the mailing list, if they wish.” And the MND nurses Sue Broad and Sandra Henry, from Cardiff Care Centre, are also regular faces at branch events and meetings. “Our aim is to support people with MND in every way possible,” says Julia. “The MND nurses make a terrific difference to people living with the disease. In turn, the branch has been able to support them by helping fund some of their specialised study trips to help their professional development.” Julia admits that it’s not always plain sailing. “You do have times when you arrange a meeting, expecting lots of people to turn up and only a couple arrive. That can be disappointing. But then there are other times when you can be surprised by someone offering to help.” For example, former Crossroads actor Stan Stennett has been in contact with the branch for over 20 years and is sent every newsletter. “He hadn’t done any fundraising for us for many years and then out of the blue he told us his son was Media Manager for the Football Association of Wales and offered to arrange a collection for us during a match at the Millenium Stadium. That one collection raised an amazing £2,000. It


“Anyone thinking of volunteering shouldn’t worry too much about being ‘roped in’ too quickly. If we can just get 10 more people willing to shake a tin in a street collection that can make a huge difference.” Collection at the Millenium Stadium, Catrin Jones and Julia

just shows that you never know where the help is going to come from! If we’d stopped sending him the newsletter, he might have thought of raising funds for a different charity instead.” As well as Julia and her dad, other members of the family help out. When her mum Ann got remarried to Nigel Tucker, they asked for donations to the branch instead of having presents. And Julia’s Nan, Pat Hallett knits toys that she sells to raise funds. “Nan is fantastic! If anyone is doing

a sponsored event she’ll take their sponsor forms down to her local club and encourage people to support them. She’s over 80 now and over the years must have raised thousands of pounds for the branch.” As well as Julia and Lyn, the committee includes treasurer Maggie Edmunds, Sheena Sargeant, Trish Walker, Lisbeth Johns and Catrin Jones. Catrin is a friend and work colleague of Julia who got involved after hearing about the

Association from Julia. “Catrin had a bit of spare time and was keen to use it in a positive way,” says Julia. “She’s brought new skills to the committee and has taken over as our website person. She has also developed our Facebook site which links people in to news and details of branch activities.” Julia says that sometimes the rewards of volunteering can be surprising such as seeing the reaction of other volunteers to fundraising. “Anyone thinking of volunteering shouldn’t worry too much about being ‘roped in’ too quickly. If we can just get 10 more people willing to shake a tin in a street collection that can make a huge difference. One new volunteer Tom Vizzard who did just that was amazed that in a couple of hours he raised £170, just seeing his reaction was rewarding in itself.” She recommends that anyone thinking of helping out get in touch with their local branch. “Any kind of help is appreciated. Sometimes it can just be making the coffee, or helping set up or clear away for meetings. Every branch is different. Our strength is fundraising, but we know we need to develop in other areas like attracting more people affected by MND to branch meetings and work at influencing or lobbying politicians.” One of her most recent highlights is the success of the local Radyr and Morganstown Festival. The Cardiff Branch was elected its charity for 2009 and Julia was thrilled when a series of local community events raised a fabulous £5,900. “We were involved in pitching to be their charity and then attended many planning meetings to ensure that all the Radyr events raised awareness as well as funds. It was terrific to be able to accept such a large cheque on behalf of the branch.” If you would like to get more involved in your local branch or group, find out more information by contacting 0845 6044150 or volunteering@mndassociation.org.

21st birthday party for Cardiff Branch

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OSSCARs results

OSCARRs award winners We are very proud to announce the winners of our 2009 OSCARRS awards for outstanding support, care, awareness and revenue raising. As in previous years the judging panel found it incredibly difficult to pick out the winners. The panel comprised Christine Hull, who is living with MND, June Walden, national office volunteer, John Bruce, volunteering manager and Ruth Barton, branch and group support and information co-ordinator. ”It all brings home the immense amount of work done by volunteers all over the county, it’s amazing,” commented June.

Funtastic Fundraising

Highly Commended: West Dorset Branch, North Wiltshire Group, West Sussex North Branch, Hull Fundraising Group.

Splendid Support Winners: East Kent Development Group, West London and Middlesex Branch, Worcestershire Branch. All three went that extra mile in support of people living with MND. East Kent for its excellent support meetings, including involving the Beavers; the West London and Middlesex visitors have built a fantastic team, including working with multi-disciplinary teams and welcoming new Association visitors Beavers at East Kent Development Group

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and are also working across London; and the Worcestershire Branch made sure everyone in its area knew about the benefits of being a member of the Association. Highly Commended: South Yorkshire Branch, Manchester Branch, West Yorkshire Branch.

Great Awareness Raising Winner: Northern Ireland Branch. For its excellent website, which now includes a chat room and for all the awareness generated from working with Marks & Spencer.

MND Rocks West Sussex South

Winners: Coventry and Warwickshire Group, Cheshire Branch. The Coventry and Warwickshire Group has grown in the last 12 months from four to 10 volunteers on the planning group. This is due to the enthusiastic and warm welcome given to new members. It is a vibrant and dynamic group and its positive approach is infectious. Members are focussed and concentrate on what they ‘can do’ to make a difference for

Winner: Torbay and District Branch. The branch heard that the local hospice in Torbay was planning on closing down its day centre services. After much lobbying, hard work and liaising with key people it is now helping to fund a monthly service for people with MND and paying for a nurse to be present. It has given this project the snappy title of ‘MND over matter’ and it means that people with MND are still able to access a day service in the area.

Working in Partnership As in previous years the judging panel found it incredibly difficult to pick out the winners.

Highly Commended: Cheshire Branch.

Branch or Group Achievement

Highly Commended: North Wiltshire Group, South West Surrey Branch, North East Herts Branch.

Inspirational Influencing

And the 2009 OSCARRS winners are:

Winners: East Dorset Branch and West Sussex South Branch East Dorset Branch held a fun and activity-packed day next to the Woodland Gardens, so people had the chance to browse and enjoy the gardens at the same time. The ‘MND Rocks!’ event was staged by Ian Funnell and the West Sussex South Branch. Being a true Led Zeppelin fan Ian had the idea of staging a fundraising gig. Over 400 people enjoyed a great time at the concert.

people affected by MND. Similarly, through sheer determination and hard work, the Cheshire Branch team has re-invented itself after losing key members, attracted new committee members and is now going from strength to strength.

Coventry and Warwickshire Branch award presentation

Winner: Mid Kent Branch. An issue that causes a high level of concern to those living with MND in the Mid Kent area is their accessibility to necessary regular specialist assessment, treatment and monitoring for their medical situation. It is accepted that all visits to King’s cannot be avoided but the branch is working in partnership with the Wisdom Hospice at Rochester to limit these visits. The hospice provides specialist palliative care, allowing ongoing assessment on a regular basis more locally, including initiatives such as respiratory checks. Highly Commended: South Yorkshire Branch, Montgomeryshire and Clwyd Branches.


news

Raising money in leaps and bounds One man has set his sights on raising money for the Association by scaling, jumping and conquering any buildings or stairs he encounters on his journey beginning in Scotland and ending in France. He will be travelling on foot (and hand) and sometimes even somersaulting through major cities on his route to Paris. He will be pushing his mind and spirit to the extreme as he attempts to accomplish something that has never been attempted before. In April Johnny ‘Sticky’ Budden intends to be the first person to use parkour to get from the most northern part of the British Isles to Paris. Parkour is the physical discipline of training to get from point A to point B as fluidly and efficiently as possible by overcoming any obstacle within one’s path by adapting one’s movements to the environment. It is remarkably beautiful to watch and is made up of a system of leaps, vaults, rolls, and landings designed to help a person avoid or surmount whatever lies in their path. Parkour goes over walls, not around them; it takes the stair rail, not the stairs. The movement started in Paris and Johnny aims to use parkour to take it back to its birthplace. Talking about his upcoming challenge Johnny said: “This is the hardest I have ever trained and will be the physically and mentally the hardest thing I have ever done. It will also be very symbolic to use parkour to get back to its roots in Paris.” Johnny has been practicing the art of parkour and freeruning since 2002. He has worked alongside many great actors and directors including the late Oscar-winning director Anthony Minghella, who was very supportive of our work and whose mother Gloria is still very much involved in the Association. He has also worked on a large number of high-profile projects including adverts for Mercedes Benz, Addidas, Land Rover and Vodafone. As well as appearing on adverts Johnny also helps train staff from organisations such as the Royal Marine Commando’s and the Metropolitan Police force. Johnny was determined to use his skill to raise money for charity.

News in brief

From left: Chris and Bradley Allen, Daniel Tydd, Dave Moulton, Mandy and John Tydd.

Bradley braves Snowdon

“What I do is incredibly physical; I use every muscle in my body to practice parkour” explains Johnny. “When I came across MND and read what it does to the body, how it takes away people’s ability to move, I “I live for knew I wanted to help raise as pushing myself much money and awareness for the MND Association as possible. and spreading “I live for pushing myself and happiness spreading happiness through through parkour. Whilst there will be a lot of endurance running parkour.” (a marathon a day) I will be spending time in cities, training with kids and locals before continuing my run.” That ‘run’ will be approximately 1,000-miles and Johnny is very happy to have companions join him for parts of his journey. You will be able to follow Johnny’s journey on You Tube that will be featuring live feeds. Our website will also hold details on the cities Johnny is travelling to and will link to Johnny’s own website and You Tube site. Do look out for Johnny in the coming months, he may well be climbing, running and jumping in a city near you. To support Johnny go to justgiving.com/ Johnnybudden Follow him at www. stickyparkour.com and www.twitter.com/ Stickyparkour and www.facebook.com/ JohnnyBudden

His mum would have been proud – Bradley Allen mastered a misty Snowdon and raised over £300 for the Clwyd Branch. Bradley’s mum Brenda died from MND in 2007 and he wanted to do something in her memory. Along with his dad Chris, Dave Moulton, Mandy, Daniel and John Tydd they trekked up to the summit from Llanberis and back down again. His dad Chris met Mandy Tydd on the MND Association Cycle ride to Reims and the two kept in touch – she was more than happy to support Bradley on his trek.

Roy meets the Queen Veteran marathon runner Roy Redford attended a special garden party held at Buckingham Palace. Roy (80) only took up marathon running 20 years ago and since then has run more than 50 marathons, raising over £180,000 for the Association. His wife Jill joined him at the party, though he left his faithful running companion, springer spaniel Bailey, back at home!

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walk to d’feet* MND

1,923 supporters take steps towards

Our 30th anniversary year saw many wonderful walks taking place up and down the country in support of our national event Walk to d’feet* MND. With 105 walks in 45 different counties covering approximately 1,334 miles and involving a fantastic 1,923 walkers; Walk to d’feet* MND raised over £145,000 in 2009 – with monies still coming in! This is a fantastic amount – congratulations and well done! Thank you to everyone who either organised or took part in a walk this year – you have each taken valuable steps to help raise awareness and funds for those with MND.

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Here are just some of the highlights of 2009: The Viking Way. A 147-mile linear path stretching from the south side of the Humber Bridge to Oakham in Rutland. Margaret Harrold, an Association visitor split the trek into 13 separate walks held every two weeks and was joined by friend and fellow walker Melanie Baines. Northampton Branch walk. Abington Park, 20 June. The Duston Boys Brigade very kindly led the walk off to a spectacular start around the park with 30 balloons released to end the walk to commemorate our 30th anniversary, raising over £5,000 to date. Cambridgeshire Branch walk. 6 June. A 24-mile circular trek over the highest hills in the North York Moors National Park, the West Cleveland Circuit, raising what’s expected to be well over £7,000. South Essex Branch: Leigh on Sea, 17 May. An incredible 200 walkers stepped out along the seafront raising nearly £27,000. ‘Shortest Walk’ challengers. Inspired by Ashley Morgan’s challenge, Colin Moss and Alec Jenkins successfully walked 440 yards and 250 yards respectively on 30 August in Forbury Gardens, Reading. Please help us to ensure we

continue to build on the success of these sponsored walks up and down the country by passing the word on and encourage others in your “Walk to d’feet* community to organise a walk or take part in one in their local MND raised area. over £145,000 With four seasons to choose from, 12 months of the year in 2009 – with and a host of special occasions monies still on the horizon; Valentine’s Day, coming in!” Easter, not to mention birthdays and anniversaries to add a more personal touch, there is always a good time to support Walk to d’feet* MND.


a world free of MND

Walking . . . l What better way to help others l Allows you time with family and friends l Let’s you enjoy the fresh air and scenery l Keeps you fit, happy and healthy. Please remember to send in photos from your walks as we would love to see them. With your permission these could be used to help promote the event in the future. Walk to d’feet* MND continues to be a great success with the whole community joining in the fun and showing support. Together, as you can see, an incredible amount of money is raised while we each take steps to ‘d’feet’ MND. For more information on Walk to d’feet* MND and for walks in your area, visit www.mndassociation.org/walktodfeet or contact Trudi Willis, on 01604 611834 or trudi.willis@mndassociation.org

A personal story Rett Gill explains why she and her husband Graham held their walk this year – and why it was even longer then they had expected. “On 28 September 2008 our world was shattered when my husband Graham was diagnosed with MND. But after serving 22 years in the army and then 17 years as a prison officer he was determined not to give in and to give something back to the MND Association who have been so supportive to him and all our family. “Graham wanted to do a sponsored walk and decided on the infamous Cross Bay Walk from Arnside in Cumbria to Kents Bank as the location. The walk covered approximately 9.2 miles across the notorious Morecambe Bay Sands and had the support of the services of the Queens Guide Cedric Robinson.  “So on Saturday 2 May, family and friends set out in the windy weather, only to find ourselves hip-high in the cold Irish sea water! “On successfully completing the walk, albeit slightly wet and

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

windswept, we were all looking forward to the train journey back to Arnside and home to celebrate our success. What we didn’t realise was that the trains had been cancelled due to it being a bank holiday on the Monday! We then had to walk a further 2.5 miles along the river bank to Grange Over Sands to get a train! “As you can imagine after this Graham was totally exhausted, and as the picture shows, he actually fell asleep on the wall at Grange Railway Station.  Everybody showed great endurance and stamina to complete this arduous task and I would like to thank everyone involved for their support.” Sadly Graham recently lost his battle with MND.

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fundraising

Raffle success Our first national raffle, held to mark our 30th anniversary has been a fantastic success. We raised over £130,000 - well above our original target. Sue Rice, whose sister Annie Walters is living with MND, was delighted to win the first prize of £3,500. Annie said: “I sold lots of tickets to family and friends, by explaining that the MND Association gets no Government funding. So buying an Association raffle ticket is like buying

a ticket to see an end to this disease.”  Douglas Graham, our director of fundraising, said to raise so much money is a fantastic achievement. “This was the first time that we had undertaken a raffle on this scale so we were unsure how successful it would be,” he added. “However, once again our members, supporters and volunteers have demonstrated their commitment to fighting MND and surpassed our expectations. “A big thank you to all who bought or sold tickets.”

Douglas Graham, director of fundraising with Annie Walters and her sister, Sue Rice, who won first prize

Fire walk fever In November we challenged people to walk over hot coals for our second fire walk fundraiser.

Northants County Cricketer Lee Daggett goes for it!

The event at Northants County Cricket Club (NCCC) has so far raised over £12,000 in sponsorship. This popular event involves walking across a 20ft bed of hot coals following a onehour training session by experts Survivorbility Ltd. The cricket club, which is supporting us as its chosen charity for 2009/10, not only donated the venue free of charge but also donated some of its best feet! Among the 38 walkers were cricketers Lee Daggett, Ryan Cummings and Jack Brooks as well as BBC Radio Northampton’s Richard Savage. It was a cold windy night as each walker conquered the coals, some several times! There was an electric atmosphere as the fire juggler threw his flames into the air, the Samba

band played and the crowd cheered. Lee Daggett, pictured, said: “My first step on the hot coals was a bit of a leap of faith. It felt hot but not unbearably so. I’m really glad I did it and it was great to be part of achieving something for the charity.” Jack Brooks added: “I felt very apprehensive just before the walk but once we got outside the crowd really helped. The atmosphere was great, I’d definitely recommend it.” The cricket club has kindly offered to host another event on 27 March 2010, which we are now recruiting for. There is a registration fee of £50, with a minimum sponsorship pledge of £150. If you’d like to give it a go contact Taryn Third, on 01604 611691 or email taryn.third@ mndassociation.org

Legacies are now more vital than ever Over the last few years in particular, legacies have become increasingly important to the MND Association. In 2008/09 financial year they again accounted for over a third of our income. We are very fortunate to have received some large bequests, but many are modest gifts, often made by people who have seen at first hand the benefits of our work. For each gift, we are truly grateful. Legacy income is, by its nature, extremely difficult to predict which is why we can never assume one year will be like the next. It is why we

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are always grateful to those people who tell us when they have included (pledged) a “We are always legacy in their will to help us grateful to those continue our work and one day achieve our vision of a people who tell world free of MND. us when they However, we do recognise have included that decisions about wills and legacies are not taken (pledged) a lightly, so we have produced legacy in their will” a Legacy Information Pack. In addition to information directly related to the preparation of wills and legacies, the pack seeks to illustrate our overall strategy for

achieving our vision of a world free of MND, and the progress we are making towards our goal thanks to the generosity of our supporters. The pack also includes a specific update on the vital research projects undertaken by the Association, and a booklet about an optional service that would enable you to pledge your legacy to an MND Association Tribute Fund, if you should wish. To receive your free Legacy Information Pack, please call 0845 604 4295 or email stephen.may@ mndassociation.org


Surprise phone call kicks off marathon fundraiser When Andrea Stroud failed to gain a marathon place through the London Marathon official ballot or the Association’s golden bond scheme she was ready to put away her running shoes – but there was a surprise around the corner. Here’s her story: “In May 2004, my mother Betty Gaskin’s partner Ray Baker was diagnosed with MND. On 7 September he died at home with my mother at his side. “We are indebted to the MND Association for supporting both Ray and my mother throughout his illness and enabling Ray to fulfill his last wish of dying peacefully at home. “I was disappointed in December 2008 when I realised I had been unsuccessful in securing a place to run in the London Marathon either through the official ballot or the MND Association’s golden bond place scheme. “Imagine my surprise when I received a phone call in January asking if I would consider accepting a place from Aid International with 80% of the proceeds going to the MND Association! I immediately said yes, and then began to panic as I realised I should have been on week three of the training programme (I had yet to even start!) and then there was the small issue of raising £1,500! “Thankfully my family rallied round and before I knew it support and sponsorship came rolling in. My husband and two sons raised £785.55 packing customers’ bags in our local Asda store helped by volunteers from our local scout group. A chocolate party raised £50 and what a great time was had by all! My 13-year-old son Joshua raised £60 selling cakes to the pupils and staff at his school. “My 11-year-old son Jacob was incredibly brave standing up in front of 180 pupils to tell them about MND and ask for their support as he prepared to do a sponsored silence in school. He had arranged to use a lightwriter to Ray Baker

help him join in with his normal school lessons and raise awareness of how disabling it can be for people with MND if they are unable to speak. Jacob was a bit worried about how he would cope in PE (he is normally very vocal!) but he managed and needless to say his teachers said it was a very quiet day in class! He raised over £49 in sponsorship. “My mother who is an Association visitor and a member of Portsmouth and South East Hants Branch raised over £150 and family and friends generously gave the remaining £800 bringing the Andrea Stroud with her sons Jacob and Tommy final total to £2,026. “I was lucky to have my family’s to be so small in comparison to the support on the day itself. I arrived at wonderful work that goes on day in Maize Hill on the day of the marathon “I was lucky day out behind the scenes of such a in plenty of time and sat on the grass valuable charity. to have in the warm sunshine to collect my “I hope to be back again next my family’s thoughts. Reality then sank in very year to raise more money for such quickly - that I had a 26.2 mile run support on the a worthwhile charity that does so ahead of me before I would see my much to support those diagnosed day itself...” family again! with MND.” “It is strange how this fact can be lost during the challenge of fundraising and training that precedes the day itself. The race began, it was Virgin London Marathon 2010 a beautiful sunny day, the crowds New year – new resolutions – new sponsors! were out in force from mile one and The first ‘Virgin’ London Marathon is on 25 April 2010. somehow I just kept running and With all of our ‘Charity Golden running and running! When I crossed Bond’ places now filled – we are the finish line 3 hours and 52 minutes keen to hear from any runners who later, I was in tears. It is an emotional were successful in the public ballot experience for me as I always think of process; securing their own place. Ray. Please call Stuart, on 01604 611689, and we’ll be thrilled “Although Tommy was too young to to add you to the team, keep you updated, provide help with the fundraising, he helped you with our MND running vest and make sure you are in his own little way by giving me invited to the ‘post-race’ reception on the big day. the biggest kiss and cuddle when he saw me at miles 12 and 23 during the …and for the inspired and hopeful marathon itself which was just precious. He proudly told everyone that his mum 2011 London Marathon ran the marathon! Public ballot – registering on 26 April 2010 “I was amazed to discover I was the As soon as this year’s race is over, the ‘Public Ballot’ opens first female to arrive back at the MND for 2011. Association reception in Trafalgar Square From 9am the online registration process begins. after the race, where I received such a Stand by your computers and be at the ready! The warm welcome and a much needed window of opportunity to register interest is very massage and cup of tea! The staff limited – the system closes once full capacity is reached who greeted me were so thankful and (normally within 48 hours). Good luck! appreciative and yet what I did seems

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down your way

Dance away. South East Wales Branch raised £1,200 with a dance at the Holiday Inn, Newport. The event was organised by Keith Storer, the Leader of the A.470s Big Band, a group made up mainly from students from the University of Glamorgan. Both the hotel and the band gave their services free of charge.

For Catherine. A charity fundraising evening in memory of popular teacher Catherine Lowe raised an amazing £4,500 for the tribute fund set up in her name. Catherine, who died last May, would have been supremely proud of the effort put in by her daughters Angela and Steph who arranged the September event at the Haven Bar and Bistro in Lymington, Hampshire. The evening included a hog roast and an auction with a range of fantastic lots. The girls’

dad, Peter says: “The event was an incredible success, in fact almost embarrassingly so, as we ran out of food at the 220 people point, having expected around 180-200, finally seeing just under 300 turn up!” His daughters hoped to raise around £2,000 from the event but actually achieved a staggering £4,500! Pictured are Steph and Angela Lowe, with chef Andy Bettey of the Haven Bar & Bistro, Lymington.

Caroline keeps up. Caroline Millar didn’t let a diagnosis of MND prevent her from running the Adidas Women’s Challenge – and along with friends Hilary, Kate and Toni - raised over £1,850. “Being diagnosed with MND has really changed my life, but not my attitude,” says Caroline. She and her friends sent up a justgiving page and began training in earnest.

Charity golf – in Spain. Roger Lomas and Derek Williamson, long term supporters of the MND Association, celebrated their first Annual Charity Golf Tournament in September and raised over E6,400 (euros). With the help of their main sponsors, Marbella-based chartered accountants Spence Clarke & Co they watched 20 teams put in stacks of effort on a wet, but hugely successful day. They had such fun a replay is already planned with the date set for the second tournament in June 2010! Pictured at the cheque presentation are Alistair Spence, Michael Egan, Susan Spence Clarke, Derek Williamson, Association fundraiser Elaine Wyspianski and Roger Lomas.

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Pedals and picnics. As if cycling from Casablanca to London wasn’t enough, a bunch of intrepid pedallers hopped out of the saddle to help at a picnic party and auction for Reading and West Berkshire Branch. The event was organised by Annelie Green. Along with husband David, son Chris Kroon, friends Ella Burroughes, Richard Livesidge and Jack Gilbert, whose grandmother died from

Running for dad. She’d always wanted to run a half marathon but it wasn’t until her dad was diagnosed with MND that Michelle Addai really gave it some serious thought. Michelle, whose dad Mike Jefferies, has the disease, had always fancied the run but never believed she could complete it. But she persuaded four of her friends to join her and together they raised over £2,000 for the Association by competing in the Cardiff event. Pictured are Michelle (centre) with her dad Mike at the start of the event along with friends and fellow runners.

MND, she managed a two-wheeled trek of 1,000 miles in 100 hours, from the Moroccan city to London Bridge. The ride, picnic and auction raised over £12,500 for research. Pictured are Jack Gilbert, Sahaj Sethi (back up driver), Chris Kroon, Ella Burroughes, Annelie Green, Richard Livesidge and David Green.


Montpelier to Montpelier. Three Bristol men set off on a 1,000-mile charity cycle ride from Montpelier in Bristol to Montpelier in France. One of the trio, Luke Betts, raised over £2,000 after his older brother, Joe, was diagnosed with MND seven years ago and had been a keen cyclist. Courtesy of Rugby Advertiser

Zulus raise funds! The locals of Sheerness in Kent continued an 80-year tradition and dressed as Zulus to raise funds for the Mid Kent Branch. Back in 1927 the crew of HMS Endeavour arrived home after a visit to South Africa. They docked during Carnival Week and to join in the fun, dressed as Zulus to raise money for charity. Even though the naval base has closed, the custom has continued and local men and boys helped raise £1,125 for us at a Family Fun Day. The Zulus were ‘pressed’ into service by Zoe and Liam Baughan and their family and friends in memory of their mum Debbie Terry, who died two years ago.

Exercise benefits. Fitness instructor Caroline O’Toole donated all the fees from her exercise classes during MND Awareness Week in June in memory of Neil Platt. She raised £277.

Kids raise awareness. The Under 8s Admiral Football Team in Rugby is raising awareness thanks to Trevlyn Dominy, who has MND. He is a good friend of the team’s manager Danny Taplin and has sponsored the team to have the Association logo printed on their shirts.

Sky high Izzy. Izzy McDowall wanted to do something really different to raise funds. A few weeks after her 16th birthday, she did just that – her first sky dive. She jumped in honour of her dad, who was diagnosed with PMA in March 2008. So far, her daring feat has raised over a staggering £8,700. In her own words, she was terrified, but as soon as she jumped out of the plane she really loved it and wanted to go back up again immediately! Channel surfing. Jamie Breakwell and a group of friends completed a 25-mile kite surf across the Channel and raised £7,000 in memory of his dad Tony, who died from MND. Tony was a popular Coventry squash player and Jamie decided it would be good to do something fitting to raise funds. Tony played squash for England and introduced Jamie,

now 38, to kite surfing while he was still a boy. He says: “I wanted to do something for MND and I go kite surfing once a week. So one sunny and beery afternoon we decided we would kite surf across the Channel!” As well as raising the cash Jamie and four friends narrowly missed the world record – only because a tanker held them up for 10 minutes!

Thank you and farewell. Heartfelt thanks have been sent in from Brian Sackett, who, with your support, raised over £500 from his Father Christmas children’s letter writing. Sadly the Diane and Brian MND Christmas appeal 2009 was the last one following the death of Diane from MND last autumn.

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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@ukipme.com Stuart Hignell*, South Glamorgan: stuart@shignell.fsnet.co.uk Rajesh Kanathil*, India: rajeshkanathil@hotmail.com Barbara Keenan*, Lincoln: bkeenan47@tiscali.co.uk 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 Catherine Paterson, Argyll: enquiries@dochasfund.org.uk Margaret Sedgwick*, Cumbria: m.sedgwick@virgin.net Jenni Shergold, Wellingborough: WwJENFAIRCLEAN@aol.com *indicates people with MND Please contact the Editor if you would like to join the mouseketeers. 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.

Just for carers DID you know there are pages on the Association’s website specifically aimed at carers? Visit www.mndassociation.org/carers Carers Voice is available for carers in the Suffolk area www.carersvoice.org .

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The power of poetry My father John Mansfield was a long term sufferer of MND, being diagnosed in 1992, four years after the first symptom appeared. He sadly passed away in September after suffering the illness for 21 years, being the longest identified person to suffer from MND in the Norfolk area.  Some years ago, when my father was no longer able to walk and had accepted he would from them on be in a wheelchair, he wrote the attached poem which helped us to understand how he was feeling. The poem was read out at his funeral service and since then many friends and relatives have commented on it and asked for a copy. Sharon Smith

The Wheelchair Two large wheels with handgrips, two smaller ones too Two handles, a seat, and a frame coloured blue It waits in the hallway whilst I’m in my bed Aware of its duty – to act as my legs Arms ever open, inviting me in I want to resist but I know I can’t win Up, turn and lower has me safely enthroned Am I stuck with this illness or has fate only loaned? Get myself settled, there’s a long day ahead Wheels will replace these legs of lead I wait for the movement that just will not come So hands to the wheels – push and run, push and run Friendly hands offer help, I’ll accept if I must It’s a way to say thank you to those I trust The wheelchair – perhaps I should thank it and call it a friend But I’ll also resent it – right up to the end.

I was recently sent this poem written by Maureen Bunting and would like to share it with your readers. Maureen lived in Belfast with her husband, three children and eight grandchildren. She was diagnosed with MND in 2000. Maureen continued to write until her death in November 2002 at age 59 and listed reading, writing, music and travel as ‘some of the greatest pleasures in life’.  Arthur Newell

Angels I asked “where are you God at this time?” And it was the inspiration for this rhyme, “I’m all around you every day In the people that surround you” I heard him say. I always believed that angels had wings And played on harps and could do just anything. But now I see the angel in the common touch In the gentle wind and the ones who love so much In the outstretched hand that reaches to lift me up Or the one who fills my drinking cup. The one who brushes my hair and washes me too And the one who makes us a tasty pot of stew My friends and family were angels I did not see Until this illness overtook me. So yes my God I really know you’re here And maybe that is why I do not fear. My husband too you have filled with your grace. In all of them I see your holy face. There are many kinds of angels I now realise And you look on them with your loving eyes.

John Mansfield

Maureen Bunting, November 2002

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 The Primary Lateral Sclerosis site at: www.geocities.com/freyerse The ALS Digest email registration site is: bro@huey.met.fsu.edu ALS Society of Canada: www.als.ca Others: Kennedy’s Disease Association www.kennedysdisease.org. A small support group for people with Kennedy’s Syndrome has been set up in the UK. Email h.walklett@lancaster.ac.uk. Please include the word ‘Kennedy’s’ in the subject line. Liam Dwyer, who is living with MND has developed a new website www.disabled4disabled.co.uk/

Building User Involvement in Motor Neurone Disease, a project developed and co-ordinated at King’s College London for people with MND, their carers and families. www.build-uk.net Also plays host to an online messageboard www.magimedia. co.uk/buildforum/ 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

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


become a trustee

Seeing the big picture What do a retired hospice chief executive, a former consultant anaesthetist, a learning support manager and an MP have in common? They are all making a real difference to the lives of people living with motor neurone disease, by volunteering as trustees. The role of a trustee is a rewarding and important one - planning the Association’s future direction while ensuring the organisation is run properly. Vice chairman of the board, Alan Horwell, says some specific qualities are required. “Our trustees come from a variety of backgrounds and walks of life but all have certain qualities in common,” he explains. “These include having the ability to ‘see the big picture’, being able to think and plan for the future and the skills needed to assimilate information and use it in discussion. “In addition our trustees need to be able to challenge ideas and ask searching questions, and show integrity while acting in the best interests of the Association.” It’s important to recognise that the role of trustee also brings many challenges and requires a time commitment. Trustees meet as a board five times a year, for two days, from Friday lunchtime to Saturday lunchtime. They also sit on one or more committees/ panels that meet two to three times a year and focus on specific areas such as care, research or finance. An agenda, minutes and information papers are send out about two weeks before meetings to allow time for preparation. Anyone who is a full voting member of the MND Association and aged over 18 can apply to become a trustee and we are delighted to welcome people with MND to the board. We will try and support any trustee with MND to meet their individual needs and do everything we can to facilitate their full participation and comfort. However, we realise that careful thought is required, and would encourage anyone living with MND who is thinking of applying to

talk to existing trustees about their experiences first. If you feel you would like to use your existing skills and knowledge, whilst developing in new areas, to make a real difference to the lives of people living with MND please consider standing for election.

Who can be a trustee? To volunteer as a trustee you must be • a full voting member • over 18 • not bankrupt • willing to be Criminal Record Bureau checked • not excluded by Companies House or the Charities Commission. How do I apply? Elected trustees stand for election in the spring and members vote in the summer. They usually serve for a three-year term. Interested? If you would like to find out more about the role of a trustee we’d be delighted to send you a copy of our trustee information booklet. To request a copy please call us on 01604 611820, or email ceoffice@mndassociation.org Alternatively fill in the form on the trustee leaflet enclosed in this edition of Thumb Print.

“The Association was always there for us when we needed them. After my partner’s death I felt I needed to be involved.” Alun Owen

“The least I can do for others with MND is use my slow progression in the most effective way I can. Being a trustee helps me to achieve that.” Jean Waters

Did you know…? Our Association visitors: • 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.

“I became a trustee as I want to influence the direction the Association is moving in.”

For more information, contact the volunteering team, on 0845 6044150, email volunteering@mndassociation.org or visit www.mndassociation.org/volunteeering

Nalin Shukla

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and it’s free of inheritance tax. For more If you wishinformation you can nowplease pledgevisit your www.mndassociation.org/tributefunds legacy within a personal MND Association Tribute Fund. May on 01604 611865, email: or call Stephen Mary Lesbirel, who sadly lost her fight against MND in 2008

stephen.may@mndassociation.org

...and help

yoursupport support our to help us work in their continue our vitalname work

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.

34 thumb print Winter 2010

Registered Charity No 294354

Every gift acts as a tribute to the person in whose name the fund has been created, while giving important financial support For more information and to to Legacies of all values are essential in the work of the thefiMND Association. request a free Legacy Information maintaining rm financial base pack, friends, visit: www.mndassociation. Quick andprovide easy toour setextensive up. Everyone: colleagues and that helps care family, org/legacies and support services, and the funding neighbours can contribute to it however and whenever they wish. Alternatively, please call Stephen of major updates research that will hopefully Regular will show you how your fund is growing. It can May on 01604 611865 or email one day find a cure for MND. also have its own website where everyone can leave messages, stephen.may@mndassociation.org But only one in seven of us who memories, photos, even video clips and music if they wish, 09TPAU and Please quote reference . makes a will, also includes a gift to donate securely to the fund online. There is no cost involved in the charity. You can make a real difference setting up against or maintenance of MND Association Tribute Funds – we in the fight this cruel disease are alwaysahappy fund, no matter by leaving legacytotocreate a the MND Association. It’s straightforward to do how big or small. We need

Registered Charity No 294354

2008 allenge an MND Association h C o Create ic x R un M e Legacies provide over a third Tribute Fund of our ofannual income In honour your special person


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

Information, advice and 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

website: www.mndassociation.org

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

✂ I am interested in helping the Association in the following ways:

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

REGISTERED CHARITY NO. 294354

Legacies

Personal tribute funds

Gift aid

Give as you earn

Name Address

Fundraising I enclose a donation of £

For credit card donations telephone national office: 01604 250505 Send to: MND Association PO Box 246 Northampton NN1 2PR

Postcode

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Your details will be added to our database. 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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