ThumbPrint Autumn 2009

The magazine of the Motor Neurone Disease Association

Thumb Print Autumn 2009

Machu Picchu Challenge • Impact Report inside

contents

02 thumb print Autumn 2009

4 Chairman’s column and newsA news update including the latest research breakthroughs.

8 Founders’ reunionOur founder members gather to reflect on what has been achieved in the 30 years since they founded the Association on 6 October 1979.

10 The benefits of physiotherapy Karen explains how physiotherapy sessions give her some much appreciated ‘me time’.

12 DNA BankOver 2,500 people from across the UK have donated DNA samples for MND research – but where are the samples now and what happens to them?

14 Telling it as it is Our readers share their inspirational, and often moving, stories of living with MND.

19 30th anniversary Our director of research, Dr Brian Dickie, looks back at some of the milestones and memorable events in MND research.

23 AGM newsIntroducing our new trustees and announcing Mark Todd MP as the new chair-elect.

24 Stepping up the search Three new research centres in UK universities are leading cutting edge research into MND.

26 Getting creativeBranches and groups are becoming increasingly creative with new ideas to get health and social care professionals involved in their work.

28 Farewell LizTributes have been paid to ‘Geordie Gem’ Liz Shipley who died recently after living with MND for 11 years.

29 Award for South Warwickshire MND NetworkHealthcare professionals in the in the MND Network had their hard work recognised by the NHS West Midlands.

30Editor’s DeskA selection of your correspondence and information.

30Fundraising We came, we saw, we conquered! – Our Machu Picchu challengers reflect on their amazing adventure.

36Down your wayRead about the exciting and creative fundraising activities taking place around the country.

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29 36

26

Front cover photo: Trine Thomas and Gemma Hennessey reach their goal on the Machu Picchu Challenge. Full story on page 32.

nationally for better care alongside our untiring efforts to find a cure – a day that I believe is ever closer.

In another research breakthrough, an international collaboration of researchers – including some funded by the MND Association – have identified three susceptibility genes that may increase the risk of someone developing MND.

It is by working together that we will beat this devastating disease and I offer my heartfelt thanks to you all for your continued support and commitment. We will never lose hope.

With warm regards,

Dr Kirstine Knox,Chief executive

chief executive

thumb print Autumn 2009 03

Diarydates2009/10

We will never lose hopeTuesday 6 October 2009 was a very special day for all of us involved with the MND Association as we marked our 30th anniversary.

Across the country hundreds of you joined in our Lanterns for Life event to remember all those who have lost their lives to MND and to unite in our fight to end the disease.

As part of our anniversary commemorations I was privileged and humbled to attend a wonderful and moving reunion of the very special group of energetic and passionate volunteers who founded the organisation.

Each and every one of them was, and remains, determined to support those who live with MND with such courage and dignity, determined to ensure no-one should face the disease in isolation, while recognising the importance of raising awareness.

Today we continue to do all that we can to ensure those living with MND receive the best care, achieve the highest quality of life possible, and die with dignity.

It was fitting that on our anniversary I spoke at the Conservative Party Conference in Manchester on the issue of personal health budgets, to ensure the needs of people living with MND, and the issues they face, are represented.

We will campaign both locally and

Firewalk††

Northampton 14 November 20th International Symposium on ALS/MND*Berlin 8-10 December

Walk to D’feet MND††

Nationwide All year round

Firewalk††

Milton Keynes 16 January

Arctic Challenge††

Sweden 21-28 February

London Marathon††

25 April

3 Peaks Open Challenge††

May – September

MND Awareness WeekNationwide 19-27 June

10K British Road Race††

London 11 July

Mount Kilimanjaro Challenge††

Kenya 16-26 October

Run Morocco Challenge††

Morocco 12-18 November

*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 [email protected]

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.

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

news

Chairman’s column


I am writing this on a very auspicious day for the Association – 6 October; our 30th birthday. I know that branches and groups across England, Wales and Ireland are supporting the Association’s programme of activities and holding Lanterns for Life events to commemorate all those who have lost their lives to MND.

In August I was honoured to attend a reunion for the founder members. It was a wonderful opportunity to celebrate both this momentous anniversary and the outstanding work that the Association has done for people living with MND since its creation. It is a remarkable testament to their vision and commitment that, 30 years later, the remaining founders are still involved with our work, both nationally and within their own local branches. You can read more about this event on pages eight and nine.

Last month I was delighted to present the Report of the Board of Trustees for the year to 31 January 2009 at our annual general meeting. Once again, it recorded a number of major successes for the Association and highlighted another year of both record income and record expenditure on our care and research activities.

However, despite these successes, I make no apologies for again stressing that we cannot become complacent. We already know that financial conditions, for the charity sector

At the moment Rilutek is the only drug proven to slow the progression of MND. Therefore difficulties with its supply became an immediate priority for us.

Sanofi-Aventis, the manufacturers, have informed the MND Association that they are producing enough Rilutek to meet UK demand, however a significant amount of this stock is being diverted out of the UK. The problems with the supply of Rilutek have arisen from the fall in the value

The problems with the supply of Rilutek have arisen from the fall in the value of the pound against the Euro...

as a whole, will get tougher before they get better. Therefore, we are currently scrutinising our plans and budgets for

the next two years to make sure that we are not caught out by any unexpected falls in income.

Although we still have strong reserves, the situation can change quickly. The valued contributions from our branches and groups are now even more important in ensuring that we continue to do all we can for everyone affected by MND.

An article about the AGM, including details of the elections for trustees and the vote to appoint a chair-elect, is featured on page 23. I was particularly delighted that members voted unanimously for the appointment of Mark Todd MP as chair-elect. Mark is a passionate and powerful advocate for the cause of people living with MND and I look forward to working closely with him during my last year in office. Likewise, I am delighted to welcome to the board three other new trustees, Barbara Howe, Alun Owen and Julie Draper, all of whom are highly experienced in their fields and greatly committed to the MND cause. I know that they will make a significant contribution to the continuing development of the board and the Association.

Alan GrahamChairman, board of trustees

Securing the supply of Rilutek Since spring 2009 we know that some people with MND have encountered difficulties in obtaining Rilutek (also known as riluzole) with some even going without it for periods of time.

of the pound against the Euro and reductions in the prices paid for medicines in the UK, which together have made it profitable to export high-value drugs to some EU member states, where a higher price can be fetched. Previously, when the pound was stronger and UK prices higher, this effect worked in reverse, and the UK imported

drugs from Europe. Trading pharmaceuticals in this way is entirely legal under EU trade laws, although only a relatively small number of traders are believed to engage in it.

On 20 August we hosted a round-table discussion with all parties involved in the supply of Rilutek, from manufacture to dispense. The organisations present were:

l Sanofi Aventis (Rilutek’s manufacturer)

l The British Association of Pharmaceutical Wholesalers (representing the three wholesalers who supply Rilutek to pharmacists)

l The Pharmaceutical Services Negotiating Committee (representing pharmacists)

l The Association of the British Pharmaceutical Industry (representing the research-based pharmaceutical industry, the people who make medicines).

The Department of Health also attended.

During the meeting all participants agreed that supply problems with Rilutek must be viewed as a priority. They each stated their commitment to work together in order to reach a short-term solution. Several ideas were discussed and we will be reporting on their progress in due course.

Chief executive, Dr Kirstine Knox, commented after the meeting: “We are grateful to all the organisations for attending this meeting and I am impressed by the commitment they have shown to ensuring that a stable and secure supply of Rilutek is available as soon as possible.

“I would particularly like to thank Sanofi Aventis, whose contingency measures have so far proved highly effective in getting Rilutek to those who need it when it has been unavailable through the normal channels.”

People with MND who have difficulty obtaining Rilutek can ask their pharmacist to contact Sanofi Aventis, who have instituted a Direct Pharmacy Emergency Delivery system. Pharmacists should call 0800 854430 to arrange for a supply to be couriered direct to them.


Bradford Bulls player Sam’s father, Mark Burgess, also a professional rugby league player, lost his battle with MND in 2007 at the age of 45. His four sons have all followed him into the world of rugby with eldest Luke playing for Leeds Rhinos and the youngest, twins Thomas and George, also signed to the Bradford Bulls.

Christa Ackroyd from BBC Look North gave a heart warming introduction, centring around the huge impact that Neil Platt had on all those who were in contact with him. She went on to auction a set of Heart of Hope jewellery, made in honour of those living with MND and their families.

Neil’s widow, Louise spoke movingly about her late husband at the event, attended by many who knew Neil.

Kelly Carrotte who organised the event with her sister Hayley said: “I feel that without a doubt, our greatest achievement on the evening was being able to give our guests such a fun night out to remember whilst also providing them with a very stark insight into the realities of motor neurone disease. We know our chosen charities will put the money raised to very good use.”

Joss Ackland has been interviewed extensively about the book My Better Half and Me, his late wife Rosemary’s diaries, edited by Joss, which include her detailed account of living with MND.

During a hectic publicity schedule he has appeared on – amongst many others -The One Show, BBC Breakfast News, Radio Five Live, and Radio 2 as well as being interviewed for publications including The Sunday Times, The Guardian and The Daily Mail.

The Mail’s review commented ‘you finish this book awed by the determination of an extraordinary woman’. Other events have included appearances at the National Theatre and the Windsor, Henley and Cheltenham literary festivals with an upcoming interview at the Folkestone literary festival on 8 November. Joss also made time to attend the 30th anniversary lantern ceremony held by the Reading and West Berkshire Branch.

By using nearly 20,000 DNA samples from people with MND and people unaffected by the disease, researchers have identified three gene variations that were found more often in people with MND than people who do not. These findings were also successfully reproduced in a second independent study.

However, this finding does not mean that people who carry these gene variations will develop the disease as researchers believe that sporadic MND is caused by a subtle combination of lifestyle, environmental and genetic factors. Unfortunately there are also no tests available that can tell whether or not somebody has these gene variations.

Dr Brian Dickie, our director of research development, explained: “This research has uncovered some of these potential susceptibility factors involved in the complex puzzle that is MND. They may not be sufficient to cause MND alone, but in combination with other factors, they may ‘tilt the balance’ in favour of the disease occurring. We now need to work out how these genetic factors are actually damaging motor neurons.”

Further informationMore information is available on our website news in research web link . If you have any questions please contact our research development team, on 01604 611880 or email research@ mndassociation.org.

Three susceptibility genes identifiedThree gene variations, (subtle differences in the ‘spelling’ of the genetic code) that may increase the risk of somebody developing MND, have been identified by an international collaboration of researchers – including MND Association-funded researchers.

Celebrity newsRugby star Sam Burgess was a special guest at the fundraiser Lots, Frocks and Dickie Bows held in memory of Neil Platt who died in February this year. The event, which took place at Leeds Royal Armouries raised £10, 000 for the MND Association and SITraN.

Pictured: Hayley Forster, Sam Burgess, Christa Ackroyd and Kelly Carrotte.

‘you finish this book awed by the determination of an extraordinary woman’

Pictured: Joss Ackland with Reading and West Berks Branch chair Margaret Moss.

news


The events addressed the subject of personal healthcare budgets.

Late news: Care services inquiry

The All-Party Parliamentary Group on MND is running an inquiry into access to care services for people with MND in England. As health is a devolved issue the inquiry will not cover Wales or Northern Ireland. The group is seeking evidence from as many people with MND as possible.

If you’d like to take part please visit the Association’s website for further information.

Couriers find best route to awareness

Mike Powell, owner of National Link Couriers based in Wellingborough lost his mother to MND and wanted to do something to help others facing the disease. Following a moment of inspiration Mike decided to contact us to develop an idea and to offer space on the back of his vehicles.

We came up with an advert that features proud van-driver Chris Olley who can no longer drive his van because of the increasing progression of MND. A photo of Chris appears alongside his quote: “I used to drive a van. Then I got MND. Now I can’t drive and soon won’t be able to walk or talk.”

The campaign was the result of collaboration across Northamptonshire with Artisan Signs in Kettering producing the adverts.

Mike said: “My vans travel across the whole country so the ads are going to be seen by thousands of travellers.

Drug trial recruitingPeople with MND are being recruited for an important clinical trial of the drug lithium carbonate. This MND Association-funded trial will provide neurologists 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 are looking for people with MND to take part. These are located in London (King’s College Hospital and the National Hospital for Neurology and Neurosurgery), Plymouth, Preston, Oxford, Birmingham, Salford, Newcastle and Liverpool. Participants would be on the trial for 18 months and would need to travel to the centre 14 times during this period, including weekly visits for the first four weeks. Travel expenses can be covered.

Recruitment for the trial closes on 30 November. For further information, please contact MND Connect on 08457 626262 or at [email protected]

The Association in partnership with the Princess Royal Trust for Carers and Help the Hospices held fringe events, entitled Personalising care – the choices we face, at each of the main political party conferences this autumn.

The events addressed the subject of personal healthcare budgets introduced in the Government’s health bill earlier this year. We have

We are focused on improving the quality of care services for people living with MND. If you would help us do this by sparing the time to complete and return a survey it would be much appreciated.

This is the largest survey of people with MND we have undertaken since 2005, as we want to ensure that we have a complete understanding of the issues you are facing. The questions are all based on the Association’s Standards of Care in which we set out what we believe should be available to people living with MND from health

I believe that once people know about this disease, they will be moved to help support the charity’s work and find the cure so that others will not suffer the same fate as my mother.”

MND on the agenda at party political conferencesbeen involved in consultations on this issue and will be making sure the needs of people with MND and the issues they face are represented.

Our chief executive, Kirstine Knox spoke at Conservative Party Conference in Manchester on 6 October, our 30th anniversary.

Tell us your views and experiences of living with motor neurone disease

and social services. We are just finalising the

questionnaire. You can fill it in online soon at www.mndassociation.org/trackingsurvey

Alternatively you can request a paper copy from MND Connect 08457 626262 or download the document from our website.

Our ultimate goal is to enhance the quality of care available to people living with MND and their carers. The information you give us will enable us to plan our own activity and also influence the way services are provided at both a local and national level.


Undoubtedly Sarah’s Story is a hard-hitting advert because it powerfully conveys the emotional and physical impact of receiving a diagnosis of MND. We do accept that our 90-second film has divided opinion on the representation of MND, but the debate surrounding Sarah’s Story has provided us with a platform to get the public and the national media talking about MND in a way that has rarely happened before.

The media debate that Chris Woodhead, the former chief inspector of schools who has MND, started during awareness week on BBC radio continued with a number of national and local media interviews.

A full-page article in the Sunday Telegraph focused on Sarah Ezekiel and her involvement in our advert and the controversy surrounding the TV ban. This newspaper has a circulation figure of 615,935 and the article appeared online too. As a consequence of the feature, 1,248 people clicked directly on to www.sarahsstory.org.uk from the newspaper’s website.

Jim Weedon, who directed Sarah’s Story, appeared on the Drive show on BBC Radio 5 Live.

Sarah and Donna Cresswell, our director of communications, appeared on BBC Radio 4’s You and Yours programme.

During the interview Sarah said: “I’m very disappointed that my story can’t be shown on TV. Without more public awareness, I fear that this disease will continue to be a silent killer.”

Speaking on the programme, Donna recommended to Clearcast that placing a warning notice at the beginning of the advert explaining that the content is hard-hitting and may be distressing to some viewers

would protect vulnerable and young viewers.

Changes to advert Clearcast has recommended a number of changes be made to Sarah’s Story and if these are followed then they will reconsider their decision. This is not a guarantee however that if the changes are incorporated then Sarah’s Story can be broadcast on TV.

Donna continues: “This is something that we are thinking carefully about. However, we believe the suggested amends will alter the ‘sense’ of our advert and so distort our original intention of conveying the full emotional and psychological impact of receiving a diagnosis which often hits patients like a bolt out of the blue.

“Another practical consideration is that the advert was produced for free (pro bono) and the changes suggested will require further editing work and this will mean a financial cost to the Association which may be prohibitive. We intend to continue the dialogue with Clearcast and we will keep you updated.”

Next stepsWe are working to secure more media coverage in a national women’s magazine focusing on the ‘real’ Sarah behind Sarah’s Story.

We will also be one of the first charities to appear on the fundraising website See the Difference to be launched early next year. This unique website will establish a video library about the work of each featured charity. By 2014, it is expected that the site will raise £250 million for many good causes. The first film we will

MND Awareness Week brought Sarah’s Story into the spotlight when our campaign featured on billboard space at mainline railway stations across England, Wales and Scotland and London underground stations, while controversy surrounding a ban on showing the advert on TV gained widespread media coverage.

“Without more public awareness, I fear that this disease will continue to be a silent killer.”

submit will be based around Sarah’s Story and will include an appeal recorded by Sarah asking for financial support to help us find a cure.

Keep up to date with our campaign, and watch the advert online, at www.mndassociation.org/sarahsstory.

Postcard campaign We have printed postcards to encourage people to watch Sarah’s Story online. Please support our campaign by sending five postcards to influential people in your area such as your local MP, mayor, or health and social care professionals to help raise awareness of MND.

To request postcards please email [email protected] or call Jenny on 01604 611839.

Sarah’s Story– the campaign continues

Sarah’s Story veiwingsSarah’s Story has now been viewed online 59,400 times.

Sarah Ezekiel

reflected on what has been achieved during the past three decades. Our chief executive Kirstine Knox and chairman Alan Graham paid tribute to the dedicated individuals. Following lunch Alan made a speech commending them for their hard work and outlining what has been achieved over the past 30 years.

Everyone present shared their stories with a film crew from Sweet Images who volunteered for the day in order to make sure our history is documented. The film was posted on to our website on the day of our actual birthday – 6 October. It includes some wonderful stories of how our Association came to be, and the people who made a huge contribution to so many.

It is remarkable how 30 years on our founders are still involved in the Association, both nationally and locally.

Everyone present agreed that it was vital that the Association

30th reunion


Marking our 30th anniversary

Thirty years ago three separate groups based in London, Scunthorpe and Nottingham joined forces and on the 6 October 1979 the MND Association was born. Those individuals, fuelled by their sense of isolation, frustration and helplessness wanted to form a group to support people like them, people facing motor neurone disease.

That first ever meeting was held at the home of Jenny Elston, who at the time was married to Roger Carus, diagnosed with MND at the age of 33. Thirty years later that same home was the destination for the founder members when they travelled back to Nottingham to mark the momentous milestone. The founders took with them many old photos, minutes and the first set of accounts showing a total of £20,000 raised after just one year.

Over lunch in a pub at Halam, they

continues to remain true to its original mission of providing care and support to people affected by MND and research into a cure. We started off fighting and until the cure is found we will carry on the fight for people with MND.

Those attending were Brian and Jean Turner, Martin Anderson, Jenny Elston, Ann Gretton, Joyce Prince, Kathy Stephenson, Lesley Ogden, Colin de’Ath, Barbara Tew, chairman Alan Graham and chief executive Kirstine Knox.

“That first ever meeting was held at the home of Jenny Elston...”

Our founder members gather at a special 30th anniversary reunion

Jenny Elston and Joyce Prince

Jean and Brian Turner


Read Joyce Prince’s personal account of the founding of our Association in the next and final 30th birthday souvenir edition of Thumb Print.

Quotes from founders

“It was wonderful to reflect on how much the care, support and awareness of MND had improved in those 30 years since it all began thanks to the Association, and to hope that we might be around to see some outcome in the research that will eventually eradicate MND.”

Lesley Ogden

“For those of us who were involved in those early days, it was a wonderful occasion for everyone to meet up again. We were able to swop stories/ photos and recall the many problems that arose and how they were solved, both happy and sad.

“We were also able to chat with Kirstine and Alan who informed us what is happening with the Association today and their plans for the future. It was very reassuring that the future of the Association is in such excellent hands.”

Colin de’Ath

“Roger always said that we weren’t forming the Association for ourselves, but for people in the future with MND so that they have someone to turn to who understands what they are going through.

“When Roger was diagnosed we could find no more than half a page of information in a medical book. Now there is so much information to be found through the Association and the internet, it is almost unbelievable. When I think about what has been learned in the last 30 years, I’m sure that a cure for MND will soon be found.”

Jenny Elston

“I heard so much about the early days from both Jim and Peggy Betterton. It was great to visit with the other founder members the place of that all important meeting in 1979.

“Jim would have enjoyed the day with everyone and been as excited about the future as everyone else, especially with regard to the advances in research. He was especially keen that we should encourage young scientists to get involved which was why one of the PhD Studentships is named after him.”

Barbara Tew

“To meet everyone again after 10 years was really enjoyable. As with our meetings, there was so much laughter. That’s one of the most striking memories - although everyone was dealing with a very serious, sad subject, and took that seriously, there was always fun and humour at the meetings.”

Kathy Stephenson

Sharing memories

Gathering around the cake complete with 30 candles!

Founder members’ film

Our founder members have filmed a very special birthday message. In the film they each tell their own personal stories and how they hope that everyone watching will help continue the story of the Association.

Please log on to www.mndassociation.org to hear their very special birthday message.

Founder members meet for the 30th anniversary reunion. Left top row: Kirstine Knox, Barbara Tew, Martin Anderson and Colin de’Ath. Front row: Jenny Elston, Anne Gretton, Kathy Stevenson, Joyce Prince, Jean Turner, Lesley Ogden, Brian Turner and Alan Graham

benefits of physiotherapy


Physiotherapy for people living with MND has to vary according to each case as it covers a wide range of symptoms. It helps strengthen healthy muscle groups and so can compensate for the weakness of other muscle groups.

Whilst it won’t improve muscle strength in weakened muscle groups, it can help maintain comfort and mobility and reduce the resulting problems of muscle weakness. However the progressive nature of MND means that these other muscle groups may become affected over time.

Although there is little evidence-based research to demonstrate the benefits of physiotherapy in relation to MND, we are aware of many people living with MND who find physiotherapy hugely beneficial in maintaining confidence, comfort and independence.

Patient perspectiveKaren Walker was diagnosed with PMA (Progressive Muscular Atrophy) in October 2006.

Karen believes that physiotherapy is invaluable for many people with MND. She explains: “One of the horrors of a diagnosis of a disease like MND is the knowledge that there is no cure and there is a feeling of helplessness that you are powerless to stop its advance. You want to be able to take part in the fight, not meekly let the disease take control of your body. Physiotherapy has helped me to feel proactive rather than a helpless victim.”

At diagnosis Karen was referred her to the local NHS physiotherapy centre. They gave her a daily regime of exercises to help her maintain as much muscle strength as possible.

Her physiotherapist Anthea would visit bi-monthly to check that she was doing the exercises correctly and modify them as her abilities decreased. The exercises gave Karen a sense of purpose to each day.

By June 2008 Karen had lost most of the mobility in her legs and needed a completely different kind of physiotherapy – passive rather than active – bimonthly visits were no

longer enough. Her doctor referred her to her local hospice. Karen now sees Liza, a physiotherapist with a particular interest in neurological cases.

Karen says: “I have a 50 minute session with Liza once a week. She takes my legs and arms through a range of motion exercises which not only feel good, but more importantly prevent the muscles from tightening and staves off cramps.

“My sessions with Liza have become a highpoint in my week. I don’t just benefit from them physically. They are therapeutic in several different ways. “They are a source of relaxation (yes, relaxation; I just lie there while she does all the work!) I have low tone so it feels wonderful to have my inanimate body moved around and stretched etc.

“While she works on me, I am able to relate any logistical problems I have encountered and she comes up with suggestions of how to tackle them. Liza’s involvement with the hospice means she has a lot of experience in palliative care and I find that really beneficial.

The benefits of physiotherapy

“My hour with Liza is totally ‘me time’...”

Karen enjoys a physiotherapy session with husband Mike


“Now I have MND I need a lot of care and attention and so I try (probably unsuccessfully!) to be as little trouble as possible. In contrast my hour with Liza is totally ‘me time’. It is a time for me and my problems. My body is pampered and I don’t have to think of anyone else. Lovely!”

Karen is convinced that regular physiotherapy has helped her keep the effects of MND at bay. Not only has it given her a sense of purpose but also, by keeping healthy muscles as strong as possible, it has enabled her to compensate for the weakness in affected areas thus helping her to preserve what little mobility she has for as long as possible.

Carer perspectiveKaren’s husband Mike is her main carer.He says: “I became involved with Karen’s physiotherapy by watching Anthea and Liza at work. Anthea taught me some basic exercises to maintain Karen’s mobility and try to preserve her independence. Once or twice a week I tried to repeat the exercises using our bed as a base.

“I bought some basic massage books and incorporated this into the sessions. Next came a folding massage table courtesy of EBay. It can be quite a strain on the back using a bed that is a bit on the low side. I regularly watched Liza working on Karen and she gradually taught me the techniques she used. This meant that Karen could have sessions at home and whilst on holiday.

“As an (almost) full-time carer it is not always easy to fit this into a typical day but it is very rewarding to know you are making a difference to someone’s day to day quality of life.

“Many of the massage/motion movements can be carried out whilst relaxing watching TV, particularly to feet, hands and shoulders. I firmly believe that Karen’s mobility has been maintained for longer by doing this. The key is to find a good physiotherapist and having the confidence to give it a go yourself.”

NB: We appreciate that not all carers will be in a position to carry out these exercises. This may be because of the demands of their caring role and how the MND if affecting the person they are caring for.

Physiotherapist perspectiveLiza Robinson works as a physiotherapist at the Princess Alice Hospice, Surrey. Liza is currently treating six people with MND, as outpatients or within the day hospice.

Liza explains: “We use physiotherapy to help individuals achieve their maximum functional mobility, to promote independence, opportunity, control and dignity within the limits of their condition. Physiotherapy should include emotional and psychological support, be patient focused, working with the individual and carer/family towards realistic goals.

“Physiotherapy is tailored to the individual’s needs so we do a thorough assessment before we start. Assessment is on-going and referral to other members of the Multi-Disciplinary Team (MDT) for their expertise is vital.”

Physiotherapy is very broad and various treatment techniques are used. Please refer to the links to further information at the end of this article.

Liza says, “Although physiotherapy is generally very good for patients, I would not advocate strongly resisted exercise, as this may increase muscle fatigue.

“Also over-vigorous passive exercises and stretches are not advisable, as many joints rely on muscles for stability and therefore if there is muscle weakness, the joints may be more susceptible to trauma.”

How do I access physiotherapy services?MND Care Centre referralMND Care Centres offer co-ordinated care to people with MND in a multi-disciplinary setting. The multi-disciplinary team is likely to include an occupational therapist, physiotherapist, speech and language therapist, dietician, neurologist and nurses who link with specialist teams. Referral to physiotherapy services is normally made by this team.

General practitioner (GP) referralDepending on where you live, make an appointment with your general

practitioner (GP) and ask to be referred to see a physiotherapist.

Self-referralThe Government recently announced new plans to make it easier for people to refer themselves for NHS treatment from physiotherapists and a whole range of other health staff.

Paying privatelyThere are a large number of physiotherapists across the UK offering treatment. If you decide to pay privately, do make sure your physiotherapist is registered CSP.

Occupational health schemesSome large employers run occupational health schemes and may include provision for physiotherapy treatment.

Private medical insurancePrivate medical insurance schemes for individuals often include physiotherapy.

How often and where will I see a physiotherapist?You may be offered a number of sessions with your physiotherapist depending on your needs. If those sessions have come to an end and you feel changes in your symptoms could benefit from additional physiotherapy sessions, do contact your GP or make a self referral.

Physiotherapists work in hospitals, GP surgeries, workplaces and in the community, for example at local hospices and health centres.

Physiotherapists will make home visits to people with MND who are unable to leave their home.

Useful websitesThe Chartered Society of Physiotherapy (CSP)www.csp.org.uk/

The Department of Healthwww.dh.gov.uk and search physiotherapy.

The MD Association website shows a range of exercises, for people to do themselves if they are able to and passive ones that carers can practise.www.als-mda.org/publications/everydaylifeals/ch9/NB: Advice should be sought from a physiotherapist before embarking on any exercise programme.

“Assessment is on-going and referral to other members of the MDT for their expertise is vital.”

DNA bank


Ian Keay

Prof Ammar Al-Chalabi in the lab

So far, over 2,500 people from across the UK have donated DNA samples, taken from a small sample of their blood, to help drive forward MND genetic research. But where are these samples now and what happens to them?

DNA – the key to future researchIan Keay is living with the rare familial form of MND that affects 10% of people with MND and has recently contributed a sample to our DNA bank. Both Ian’s father and younger sister were diagnosed with MND aged in their sixties.

“I was 71 when diagnosed with MND. The shock of that diagnosis felt double as on reaching 70 I’d felt sure I had escaped what seemed for my family the danger years – the sixties.

“I had two very strong reasons for providing a DNA sample. My younger sister who lived in Canada was so consumed with hurt and anger, blaming our father for her MND, that she refused point blank to donate any blood samples for research. At the time, I felt this was a huge shame, little realising then how useful her contribution could have been to today’s research. Secondly, I know the DNA bank will not help me but I want

The journey of a DNA bank sampleBy collecting DNA samples from people with MND and individuals unaffected by the disease, we can begin to learn more about the causes of MND and can develop future treatments. Six years ago, we started to fund a UK DNA bank.

to do anything and everything I can to help my son, grandchildren and other families living with the threat of MND.”

Ian’s wife and son also agreed to donate a sample. “They both feel strongly that they want to help in any way they can, however small, to find the cause and ultimately a cure for MND.”

Even though Ian’s family is affected by the familial form of MND, it’s still important for our DNA bank to include samples from people with the randomly occurring sporadic form of the disease. This will ensure that researchers can learn more about the small genetic spelling differences (variations) that are thought to contribute to the cause of sporadic MND in conjunction with lifestyle and environmental factors.

The journey beginsOnce the blood samples have been taken, they are then sent to two sites. One set is sent off to a facility where they will be turned into cell lines – this is to ensure the samples will ‘live forever’ as an everlasting resource. The second set is sent to the UK DNA Banking Network (UDBN) based at the University of Manchester. Prof Bill Ollier from UDBN explains: “We are currently in the middle of a ‘genetics revolution’ where major advances in technology and computing are helping identify the factors responsible for why and how certain diseases develop. Increasingly the limiting factor is having access to sufficient numbers of high quality and well documented DNA samples.

“Our role is to facilitate this process and maximise the use of sample collections. By managing the collection, processing, storage and distribution of samples we can ensure quality, correct governance and

“I know the DNA bank will not help me but I want to do anything and everything I can to help my son, grandchildren and other families... ”


maximise access.”By using state-of-the-art

technology, the samples sent to UDBN are tested for their quantity and quality of DNA as only ‘top notch’ samples can be used for research. The samples are then stored in freezers that are set to -80oC. As the samples are stored at such a low temperature they can be used in the future – whether this is months or many years to come, each sample will remain fresh. To date, over 50,000 samples from a variety of difference diseases have been processed and stored at UDBN.

DNA samples in the labDNA samples are increasingly being used around the world as genetic research advances at a rapid pace. The Human Genome Project took about 20 years to reveal the exact genetic make-up of a single person. It cost £150 million and was a worldwide effort with hundreds of researchers. It’s now possible for a single researcher to generate the same information in a matter of months and at a fraction of the cost.

Prof Ammar Al-Chalabi is one of the first UK MND researchers to start using our DNA bank samples as a resource for his team’s research. He explains: “This is a relatively large DNA bank and increasing in size, so researchers can study unusual genetic variations or genetic changes that have a small effect but are important.

“Our research specifically involves studying thousands of samples looking for genes affecting the risk of developing MND, the age at which it might develop, whether there will be bulbar or limb onset MND and how long someone might survive once affected. We have recently found

News in briefa gene that has a protective effect on survival, which we can study to try to develop a treatment. More samples are now being processed to check these results and take the findings to the next stage.”

The identification of susceptibility and protective genes could provide clues to the underlying mechanisms of MND. At the Association we currently fund a number of genetic research projects that use new technology to hunt for genes.

Without DNA banks, studies such as these would not be possible. Only with the combined effort of people who donate DNA samples, storage facilities such as UDBN and researchers from across the globe, can MND genetic research unlock the secrets of MND.

DNA bank - the future An extension to our DNA bank has also recently been awarded to include an epidemiology questionnaire. This research study aims to uncover more about the lifestyle and environmental factors in combination with the DNA samples that are donated.

“Without DNA banks, studies such as these would not be possible...”

More informationIf you are interested in finding out more about our DNA bank, including what the next steps should be if you wish to be involved then please visit our website and search for ‘DNA bank’.

Alternatively, you can order a DNA bank information sheet from MND Connect on 08457 626262, email [email protected] or from our research development team on 01604 611880, email [email protected].

Annual study day

Nearly 200 health and social care professionals, Association visitors and staff gathered in Birmingham for the annual study day in June, and were treated to an impressive array of presentations on all aspects of MND from a variety of eminent speakers.

The day was jointly chaired by our chief executive Kirstine Knox and our director of care development Heidi Macleod.

Delegates heard presentations covering an overview of MND, and the current research being undertaken into its cause and treatment, as well as the role of palliative care, and cognitive, respiratory and communication issues. Afternoon workshops offered the chance to hear how the Association can support professionals, as well as how to plan ‘advanced’ care and the impact of MND on the whole family.

The quality and diversity of information and research data were extremely well received by all the delegates.

At the end of the day they were asked to reflect on what they had learned, how they would put it into practise and what further issues had the day raised for them. Their replies were both thoughtful and insightful and reflected the buzz of the day. Most significantly the delegates were obviously keen to spread the knowledge they had gained on the day to other colleagues, so enabling the Association to reach more professionals with our messages about consistent and co-ordinated care, advice and support.

The 2010 MND Association Study Day will be held on 15 June at the Staverton Park Hotel, Daventry, Northamptonshire.

Details will be promoted on our website later in the year.

personal experiences


Telling it as it isThe reality of living with MND

Portuguese Joselia, 58, is looked after in the continuing care unit of the Curry Cabral Hospital, in Lisbon. The ward is one where there is little hush and lots of love. The unit was built especially for Joselia, and for a second patient named Miguel. Another patient, Paulo, has recently joined the unit. All three are paraplegic and have had a tracheostomy.

There is always something going on, and when I flew over to visit Joselia, along with our older sister Dulce, we found that we’d arrived at party time.

It was Miguel’s 34th birthday and his parents, family and friends brought a huge spread for everyone to share. There were Portuguese specialities of meat, cheese, little fishcakes, other delicacies, juice, and even port wine! A group of primary school children pinned up paintings and huge paper sculptures around the ward.

The main Portuguese television channel, RTP 1, filmed the event, including Joselia’s delighted reaction to seeing so many selfless family and friends. Around 30 people filled the

ward at one stage, including a choir of adult volunteers and five young children who charmed everyone by singing and reciting nursery rhymes!

Joselia gave up a promising career as executive of an international hotel group when she became ill, but her positive outlook, warm nature and unwavering sense of humour inspires everyone she meets.

She is full of praise for the hospital doctors and nurses who have even taken her on an outing to the coast, and to the wedding of one of her nieces. She had another wonderful day in May when she saw her son Andre marry Ana Sofia at Cascais. The couple met when Ana Sofia, a nurse, was looking after Joselia.

Hospital staff helped Joselia get ready for the occasion and she was taken by private ambulance to the wedding’s romantic location – in the grounds of a historic lighthouse overlooking the Atlantic.

Ana Sofia now works in a different department at the hospital but and never misses an opportunity to pop in and see Joselia.

She’s determined to live to enjoy every day as it comes and is the proud grandmother of Afonso, aged three, who visits her regularly. “If I had lived only till 1995, as was the early prognosis, I wouldn’t have known the joy of being a grandmother,” she says.

Read her blog: www.littlethingsmakethedifference/blogspot.com

Feeling at home in hospital

Graciete Amaro pays tribute to her sister Joselia Sequeira, whose determination to live life to the full, despite living in hospital, humbles everyone she meets.

Joselia, and her sisters Graciete

(left) and Dulce, at the wedding of Joselia’s son

Andre.

Even Father Christmas is helpingBrian Sackett, whose wife Diane has recently died of MND, is again aiming to raise money by offering to send children letters from Father Christmas.

As the real man with the long white beard is so busy over the festive season, they have decided to help out. For just £2, parents, grandparents or friends can arrange for the child of their choice to receive a letter signed by the rotund man in red. All proceeds go to the Association.

Imagine the excitement a child would get from receiving such a letter. Simply send your child’s name and address to the address below for a personal greeting. Make your £2 cheque or postal order out to MND Association and send to:

Father Christmas Letter7 Ashendene GroveSturry, Canterbury, Kent CT2 0NA

Ho, Ho, Ho!


A remarkable life

David Loades sums up the positive attitude of his remarkable wife Jenny who died from MND in October 2008.

We first noticed that there was something wrong in July 2003 when we were holiday in Ireland. Jenny fell and cut her face badly on a rock. The doctor remarked that her hands were unscathed – she hadn’t put them out to save herself.

After more falls, it was suspected that a hip replacement was needed, but our astute GP noticed that Jenny’s hands showed signs inconsistent with hip trouble. He sent her to a rheumatologist who, in turn, sent her on to a neurologist who diagnosed MND.

Some time after diagnosis, she safely came down a long flight of steps at our church. At the bottom she tried to turn but her legs wouldn’t function and once again she fell badly. It became clear that turning was the problem.

She was supplied with a fully-powered wheelchair but by then her hands were too weak to control it. Once when she was using it in the house, she trapped her foot between the chair and the bed. Her hand locked and she couldn’t kill the power. We had to return the chair. Jenny is the only case I’ve heard of where under stress, her muscles simply ceased to work and locked.

Jenny did everything possible to stop MND getting in the way of everyday life. She continued to drive from our Kent home to Fleet in Hampshire every week to help with our grandsons. She drove to Ebbw Vale to visit relatives. Her sister Brenda always went along on those trips to make sure Jenny was all right but also to fill up the car with petrol. The first function Jenny lost was the ability to use her right thumb so she couldn’t open the petrol cap.

She continued to deliver the church magazine and served in a local charity shop. When her hands deteriorated so that she could no longer handle money she sorted the clothes in the back room. She only gave up when she could no longer manage a high step on the premises.

I bought ramps so that she could

get into her friends’ houses and we continued to travel, visiting the Algarve, Spain and Jersey.

Almost from the start Jenny couldn’t turn over in bed but less than two years later it was clear that she wouldn’t be able to stand for much longer. We decided to get a removable hoist fitted in our car so that I could lift Jenny out of her wheelchair into the front seat.

I converted the dining room into a bedroom we got another hoist for the house so that Jenny could transfer from the wheelchair to the bed or riser-recliner chair. The house hoist came in very useful and meant we could take it with us on our travels. We went to Center Parcs in Suffolk several times. Their disabled chalets were better equipped than anything we ever came across.

In 2007, Jenny started going to St Christopher’s Hospice in Sydenham every Friday. In the day unit she made all sorts of things: dyed silk scarf, Christmas crackers and a beautiful hanging mirror.

In January 2008, Jenny suffered a serious infection and was rushed to hospital. Her breathing was seriously affected leading to low oxygen levels in her blood. On her discharge Jenny had to use a Non Invasive Ventilator at night and for part of the day. Although Jenny kept up her socialising we no longer dared travel any distance in case she needed the ventilator and we were stuck in a traffic jam. By this time, Jenny had two carers who

came to help at breakfast, lunch and at night time. One of the ladies was a very caring lady from Uganda, and like Jenny, a confirmed Christian. She really liked some of Jenny’s religious music so Jenny got her copies of her favourite discs.

Through all these troubles Jenny kept in touch with her friends. She sent emails and shopped online for a long time. When she could no longer hold the phone to her ear, she turned to texting. I had already bought her a mobile phone designed for the disabled. This was open on her table and by wrapping her left hand around her right with her index finger sticking out she would reply to every text. Also on her table were the TV controls, her lipstick and compact. For a long time she was still able to apply her own lipstick before I had to do it for her. Jenny was very proud of her appearance.

Jenny’s story is one of a vivacious outgoing person, determined to keep fulfilling her commitments, while concealing her fears and suffering from her friends. She always presented to them her old self, the one they knew and loved. Her friends rallied around to try and make her life as full as possible. I believe that we succeeded!

Jill Ferdinando, one of those friends, paid her own personal tribute to Jenny in her church magazine, holding Jenny as a shining example of courage and faith. The two were friends for over 50 years. Jill wrote: “MND is one of the cruellest and most frightening illnesses. Jenny bore this illness with grace and fortitude. She must have dreaded what was happening to her. Her cheerfulness and great courage were truly amazing, her deep steadfast faith gave her and her husband the strength they needed.”

Jenny did everything possible to stop MND getting in the way of everyday life...

Jenny’s tableJenny had a really useful table that made a lot of difference to her everyday life. Her sister found it in a local shop supplying equipment for the disabled. It had wheels on the side supports and both height and width could be adjusted. I adjusted its height to go over the wheelchair and its width to go over the recliner chair. When using it, Jenny could have her legs and feet raised up.

Jenny Loades



Love at first sight

Jo Stephenson writes movingly of her husband Frank, who died from MND in June.

Ours was love at first sight. We passed in the street, looked at each other then both looked back at the same time! That was in 1967 and the start of our life together. Frank was so handsome, he had a great sense of humour and was hard working.

We married in 1970 and had two lovely children, Lee and Joanne. We took our holidays in Cornwall. Frank always made us laugh and we really enjoyed life. When our children left home to start their own lives, it was a new beginning for us. Then Frank started to slur his words. I thought he might have had a mini stroke and persuaded him to see a doctor.

Frank was diagnosed with MND in February 2006. We were devastated. We’d never been abroad before so we booked a holiday to

Frank and Jo with their children Joanne and Lee

In the frame

Colin Noad’s experiences during a spell in hospital have been recorded on DVD for staff training.

I spent 26 days at Frimley Park Hospital earlier this year. I found the standards of care to be, generally, very high. However, as you might expect, given that I had little else to do but observe what was going on around me, there were a number of observations concerning care (of course), communications, ‘bedside manner’ and the staff’s recognition of the special problems associated with MND.

I had all this information and wrote it in a diary. What should I do with it? A series of contacts led me to Mary Dunne, the hospital’s director of nursing. She was interested because, whilst valuing her staff highly, she

Apart from being a charismatic consultant physician, Dr Naidoo’s own father had had MND and so he was already ‘on side’.

He kept on walking for as long as he could and did crosswords and puzzles to keep his brain active...

Ibiza and really enjoyed it apart from the muscle pain and cramps Frank suffered.

Frank had to give up his job the following August as it became too much for him. He kept on walking for as long as he could and did crosswords and puzzles to keep his brain active.

Our son Lee got married in May 2008. By then, Frank was in a wheelchair, unable to make a speech

but he still managed to last out all day and had a smile for everyone.

He suffered pain and discomfort for the three and a half years he had MND but still had a smile and a joke for people. Sadly, my courageous, brave Frank passed away on 23 June 2009. He was 59. The church was bursting at the seams, cards and donations flooded in and I raised over £460 for the Association in Frank’s memory.

wanted to improve standards even more. She asked if I would be interested in recording an interview covering my hospital experiences. It would be used for staff training, to help them appreciate things from the patient’s point of view.

I jumped at the chance, especially

after she suggested that we could also cover the symptoms of someone living with MND.

I sat in a small room with Chris Barrett, from their risk management team, a cameraman and a doctor I had met during my stay, Dr Naidoo.

Apart from being a charismatic consultant physician, Dr Naidoo’s own father had had MND and so he was already ‘on side’. We got the video made in

around 30 minutes – they call me One Take Colin now!

The hospital will be able to slot the DVD into staff training sessions. They will not only cover the nursing and care issues but will also encourage discussion of ‘our’ disease and the special problems that it poses for the patients and for hospital staff!


My parents

Louise Small was devastated when her dad died from MND. Then she heard some horrific news about her mother. Here she recounts a tragic course of events.

Keith Brain, my father, was diagnosed with MND about six months before my wedding in May 2004. I knew nothing of the disease. To be honest I didn’t know what the big deal was as initially he was quite well and just had a few problems with his voice.

It was only as I read more that I realised how degenerative MND was and that my dad really didn’t have long to live. Elizabeth, my mom, was amazing and looked after dad full time at home. Dad totally lost his voice, but he remained strong and positive. He walked to the shop at the end of his road right up to the end when he became poorly very rapidly. He died on 7 June 2005.

It might sound quite cold, but to be honest, dad’s illness and death were a bit of a blur. My life took the most devastating turn when my mother was also diagnosed with MND in April 2008. This news just took over and everything else that happened before has faded into a nothing.

Mom’s voice started to be affected and she was slurring. I remember hoping it wouldn’t be MND and then I told myself to stop being stupid. After all, it affected so few people that there was no way both my parents could have it, could they? What bad luck that would be…

I remember the doctor telling her she might have suffered a stroke. The feeling of relief that hit me when I heard that was overwhelming – I was almost happy with the news. Then she was referred to a neurologist in Birmingham, who initially thought the same. Unfortunately no results materialised to prove this. She was tested for Mysenia Gravis and again I had everything crossed that it would be that but deep down I knew what the outcome was going to be. Mom was diagnosed with MND.

My mom was the most wonderful woman in the world. She was my best friend and we would speak on the phone at least six times a day. She was loud and full of fun. We used to joke that we’d pull up on the drive and

hear her on the phone from inside the house! Her voice was amazing with such clarity - we used to say she spoke like the Queen. For her to lose her voice was pure torture and I don’t know how she coped, but she did and took everything in her stride. She’d been a nurse for over 45 years and everything related to MND she dealt with and administered herself. She was fitted with a PEG in June last year. She was determined to stay at home. It worried us, but she loved us coming to stay over and adored her grandchildren who still speak about her on a daily basis.

Mom was admitted to the John Taylor Memorial Hospice in Sept 2008 as she really did deteriorate very rapidly and was becoming unsteady on her feet. We spent every day with

Gadget man

Prof D Mark Cato was diagnosed with MND in February 2008 when he was approaching 74.

Since his diagnosis he has been committed to designing a number of gadgets to help him live with the disease. He’s also been keeping a diary which he is now turning into a blog.

“My doctor confirmed what I’d feared all along – that I had MND. I had suspected this as I’d been looking on the internet. But strangely the diagnosis was a relief as now I knew why my arms were weak.

“Since that day, my arms and hands are becoming much weaker. I can now no longer manage buttons or zips and in my day-to-day work I can’t lift heavy files. I’ve sometimes had to ask a shop assistant to help me remove my wallet so that I can pay for a purchase. On

her and I couldn’t bear to leave her side. She died last November.

I miss her every day and cannot believe that one family could go through so much and lose both parents to MND. I think the thing that hurts the most is that my mom knew what she was going to experience, having nursed my dad through it. Before that ignorance was bliss.

In July this year a friend and I organised a charity walk in aid of MND. Around 45 of us walked 7.5 miles at night. We drank beer and Pimms on the way to keep going! It meant so much that so many people agreed to help and I was so proud that they were doing this because of my mom and dad. The sponsor money is still rolling in but we are aiming for a high total.

I suppose I worry that having lost both parents to MND means I may end up the same. I worry about my children too. But all this makes me live each day to the full even more. That’s exactly what my mom did, so I have to stop myself from worrying and fretting about the future. I just have to enjoy the fact that I have a wonderful husband, two beautiful children and a fantastic brother who has been through just as much as I have and has come out the other end, albeit very sad and changed by this experience.

one occasion I asked a policeman if he would be kind enough to tie my shoe lace which had come undone in the London Underground.

“All of this has been frustrating but it has also inspired me. I’m now deeply committed to finding and designing gadgets which will help not only me but other people with weak hands – arthritis sufferers, stroke victims, people living with Parkinson’s disease and so on, to lead as normal a life as possible.

“I have resigned from my golf club. I have also resigned from my last arbitration. It was a heavy case and likely to go on for some months. Being unable to write legibly without great effort I could see no way that I could run a hearing with two heavyweight lawyers appearing before me. As president of the Arbitration Club I shall continue to attend lunches in London as long as I am able to. It’s not so much a question of giving up as re-adjusting.”

Mark is keen to hear from anyone who has ideas for gadgets or has any hints or tips for anyone affected by MND. You can keep up to date with his latest news, his amusing anecdotes, and send him information about your own design ideas at www.dmarkcato.com/

My life took the most devastating turn when my mother was also diagnosed with MND in April 2008.



Where there’s a will, there can be a wheelchair

Visits to friends in Looe, Cornwall have always been enjoyable for Ruth, who was diagnosed with MND in March 2008.

The facilities where we stay have always been fine, with everything on one floor, and a beautiful view over the sea.

But there was one hitch: the house is between two roads, one at sea level and the other about 20 metres higher.

This meant bouncing down several flights of very steep steps when going in and out, and pushing Ruth’s wheelchair could cause me back problems. A ‘stairclimber’ could have helped, but it wasn’t worth it for just the one visit.

After scanning through leaflets and offers inside newspapers, I saw an advert for a ‘sack truck’ designed for stair climbing. Unfortunately, after it arrived we found out that it was far too heavy - and that we were back to the drawing board.

So I attempted a different design for the wheelchair which would make the sack truck usable, with the help of a engineering friend, Nick.

I grafted the two ‘three wheel units’ on to the small and lightweight Stowaway Remploy I had already. We finished by attaching the sack truck’s longer handle onto the new wheel brackets.

Having arrived at Sue and Derek’s, we assembled the chair without any bother and tested it on the steps with Derek at the front and me behind Ruth. Ruth was helpless with laughter as she rolled and jolted down the steps safety, but maybe a little too quickly in parts!

In Looe the next day, we decided to use the Action 4 tall wheelchair as the steps there were wider and shallower. But afterwards, Ruth asked if she could use the modified chair - and my back agreed!

A push to Looe up the 1 in 3 hill out of Plaidy, along the cliff path and then down the 1 in 3 back into town went well. We visited Looe again the next

day and a cushion helped with any jolts. It was a success.

Should we be able to go and see Sue and Derek again, I would try softer tyres, a lighter weight carrier for the wheels, larger wheels, and brakes, as they had been removed with the old wheels.

Overall, the use of the modified chair was deemed a success and enabled us to enjoy our visit to Cornwall very much indeed.

“I grafted the two ‘three wheel units’ on to the small and lightweight Stowaway Remploy I had already.”

News in brief

SharegiftDid you know that unwanted shares can be converted into cash for the MND Association?

ShareGift, a registered charity, specialises in putting unwanted smallholdings of shares to good use. Donated shares are re-registered into a charity’s own name and collected until there are enough to be sold.

Since 2001 we have received nearly £35,000 thanks to supporters of the scheme. Without ShareGift, this money would remain tied up in unwanted shares.

Learn more about ShareGift in the flyer enclosed with this edition of Thumb Print.

Flying high Jan Elmore, 64, was diagnosed with MND in 2008. In response to the care, support and advice given to her from the Association she is doing a tandem skydive in October in the hope of raising awareness and £1,000 towards research. Jan is pictured with her grandson Tomas and daughter/carer Kate. To help sponsor visit www.justgiving.com/skydive4mnd/

Correction: Rodney Lunn In the summer issue of Thumb Print we incorrectly named one of the winners of our Christmas card competition as Roger Lunn. The winner was in fact Rodney Lunn. We apologise for this error, particularly to Rodney’s family. The winning designs are available for purchase in our Christmas Collection 2009. As well as the catalogues the collection is available to view online visit www.mndassociation.org/shop


2009 marking our pearl anniversary

“Let us keep looking in spite of everything. Let us keep searching. It is indeed the best method of finding, and perhaps thanks to our efforts, the verdict we will give such a patient tomorrow will not be the same we must give this patient today.”Jean-Martin Charcot, 1865 French neurologist who first characterised MND.

30th

“It would not be wildly inaccurate to say that, back in 1979, the amount that was known about MND could be written on the back of the proverbial postage stamp. Researchers knew a lot about the structure of motor neurons, how they connected the brain to the muscles and how electrical signals were conveyed down these nerves to make the muscles move, but very little was known about why motor neurons die in MND.

“One of the problems facing clinicians was the fact that there was no consistent method of diagnosing MND. What one neurologist in one country would call MND, and the way they arrived at the diagnosis, could be radically different from another. A defining milestone in resolving this problem was a meeting of MND neurologists at El Escorial in Spain, in 1990, out of which arose the El Escorial Criteria: an agreed process for diagnosing amyotrophic lateral sclerosis (ALS, the most common form of MND). Having established that clinicians around the world really were talking about the same disease, researchers were able to start performing much more rigorous studies.

“There was one part of the world where a strange variant of MND was unmistakable – on the South Pacific Island of Guam. The MND Association and others funded research into this specific form of MND in the mid-1980s, in the hope that it would offer some insight into other forms of the disease. Much of this work led to a theory that a chemical called glutamate played a role in damaging nerve cells. At that time, there was a lot of interest within the drug industry in drugs that would

control the actions of glutamate on nerve cells. One of these, riluzole, was tested in an international clinical trial by the drug company Rhone-Poulenc-Rorer and licensed for the treatment of MND in 1996. It wasn’t a wonder drug, but it represented the first ‘chink in the armour’ of the disease.

“One of the biggest unanswered questions in research has been ‘What causes MND?’. Researchers knew that the disease sometimes ran in families, so at least in some cases genetic factors were important. The first big breakthrough came in 1993, when US scientists discovered that a genetic mutation in a gene, called SOD1, was responsible for about a fifth of familial MND (and about 2% of all cases). Having a definite cause of MND meant that scientists could create much more representative laboratory models, in order to study

“One of the problems facing clinicians was the fact that there was no consistent method of diagnosing MND...”

the chemical processes underpinning motor neuron degeneration.

“If new causes can be identified, then new, distinct disease models can be created, which can be used by scientists to ‘cross-reference’ the ways motor neurons die, helping them to home-in on the common pivotal chemical events that underpin MND. Good laboratory models are also vital to the drug development process. For these reasons, the Association has made research into the causes of MND a priority in recent years, establishing a DNA Bank and funding gene-hunting projects in the UK and beyond. This research is beginning to bear fruit - in the past two years, MND Association-funded labs have identified two new genetic causes of MND and several other genes that may either predispose people to developing the disease or dictate the rate of progression.”

Our 30th birthday

Our 30th anniversary souvenir edition of Thumb Print continues with the third instalment. So far we have looked at the history of the Association, the improvements in care and now Dr Brian Dickie, our director of research development looks back at some of the milestones and memorable events in MND research.

30 years of research



Research gathers paceResearch, by its very nature, is forward-looking. The founding members of the Association had the future in mind when they agreed that research should be a cornerstone of our work. Thirty years on, the Association is funding more research than ever before. We have over 40 ongoing projects, including major initiatives in genetics, developing new models and identifying clinical disease markers, as well as our first venture into funding clinical trials.

MND can affect anyone, anywhere in the world. It does not respect national boundaries, so in our fight against the disease we should not be constrained by parochial thinking. We realised this 20 years ago, when we established the International Symposium on ALS/MND, an event which has grown

to become the major forum for scientists and clinicians to discuss the latest advances and develop new international collaborations. The key to defeating MND lies in fostering strong international collaboration between the leading researchers around the world, making biomedical resources and new technologies more readily available and sharing new understanding of the disease as rapidly as possible.

There is still much to do, but over the past 15 years the pace of scientific research has started to accelerate and will continue to do so. The challenge for the research community, in partnership with funding bodies such as ourselves, is to take this burgeoning knowledge of the disease from the laboratory and translate it into new approaches to treating the disease in the clinic.

1869 MND is first characterised by Jean-Martin Charcot.

1953Francis Crick and James Watson crack the code of DNA.

1980Association funds first research projects.

1990The first pan-European clinical drug trial for MND is conducted.

1994El-Escorial criteria for diagnosing MND is published.

1994The first SOD1 mouse model for MND is created for research.

1993SOD1 identified as a cause of a fifth of the rare inherited (familial) form of MND that affects 10% of cases.

1979The MND Association is founded.

1952 Hodgkin and Huxley discover that nerve cells carry electrical signals.

1989First International Symposium on ALS/MND. 40 researchers and clinicians attend the one-day event.

1996 The first and so far only treatment for MND, riluzole, was licensed in the UK.



Founder member and first chairman, Jim Tew MBE, with a long established career in the field of research, and himself living with MND, produced the Plain Man’s Guide to MND, an annual report on the developments at each Symposium.

1994The first SOD1 mouse model for MND is created for research.

1998Association funds first PhD Studentship research project.

2003Association set up National DNA Bank and Clinical Database to learn more about the causes of MND.

2008Stem cell technology reprogrammes skin cells (from sisters affected by familial MND) in to motor neurones that can be used as a model of MND.

2009A third gene mistake is found to cause MND in a gene called FUS.

2009Protective gene variations (in a gene called KIFAP-3) linked to increased survival in people with MND.

2008Association funds its first clinical drug trial into lithium carbonate.

2008Association funds its first clinical drug trial into lithium carbonate.

2008Second causative gene called TDP-43 is identified.

2009Three genetic variations are identified that increase the risk of developing MND.

2003Human genome project completed after 13 years. The full sequence of all three billion letters that make up a human’s genetic code, otherwise known as a genome, is now recorded.



We issued an appeal in the last edition of Thumb Print for your Pearls of Wisdom. Thanks to everyone who sent them in. Here is a selection:

“ Set up a special place in your home to keep all your MND equipment, medicines and documentation all together, and let all who need to know of its existence and location.”

“ Get china-lipped edge food plates. These are easier to eat from and can be warmed in the oven/microwave. Bone china cups and mugs keep drinks warmer longer.”

“ Wear an arm strap to keep your walking stick attached to your arm, this means both hands can be used if needed.”

“ Grab rails fitted at the top and bottom of the stairs makes climbing stairs a little easier.”

“ Attaching a keyring circle or ribbon to a fly zip makes fastening zips easier.”

“ Wear a body warmer or gilet as these are easier to put on/take off.”

“ Touch lamps can be turned on and off with minimal dexterity and effort.”

“ Attaching a key extender and grip for door keys enables the key to be turned more easily.”

Lanterns for life Special 30th birthday commemorative ribbons

Once again hundreds of you have been in touch for ribbons. We have sent out more than 10,000 ribbons. Stocks are running low so if you would like to request some ribbons please do so soon.

Our website

During October (our birthday month!) our website featured 30 different faces of MND. Each person will be someone who was diagnosed with the disease over the last 30 years, to represent each year of our existence.

Other new editions to the site include 30 stories from 30 volunteers and personal accounts.

Read more about our 30th activities at www.mndassociation.org/30th

As part of our programme of activities to mark our 30th anniversary we are commemorating all those who have lost their lives to MND, those who are living with MND and unite in our fight to end this disease.

Hundreds of you requested lanterns for your lanterns for life events. On 6 October many of you lit a lantern, some at home with close family, others at larger events. If you would like to share photos from your lanterns for life event please send them to [email protected].

For those of you planning to hold a lanterns for life event later this year and still require lanterns please get in touch with Liz.


agm

Mark is chair-electMark Todd MP has been voted to become the chair-elect of our board of trustees, following a ballot of members. His appointment was confirmed at our AGM.

Since his election to the House of Commons in 1997, helping people with MND in his constituency (South Derbyshire) as well as supporting our work has been an important part of Mark’s parliamentary career.

Most notably, he is a founder member of the All-Party Parliamentary Group on MND and has served as chair through its nine-year history. Under his leadership, the group has been enormously influential, particularly in persuading the Government and the National Institute for Health and Clinical Excellence (NICE) to progress work on making non-invasive ventilation more accessible to people with MND. This important intervention has been proven to have a dramatic impact on the quality of life of some people with MND who have difficulty in breathing due to the paralysing effects of the disease on their respiratory system.

Mark said: “The group has actually broadened the level of knowledge of the disease amongst MPs and

peers and has provided a valuable platform for discussions with clinicians, researchers and policy-makers, and arguably most importantly, those with MND and their carers.

“Chairing the group meetings has given me an understanding of the Association’s ambitions and objectives. It has also given me an insight into what it means to live with MND and the urgent need for improvements in care services in some areas of the country.

“I am proud to serve as chair-elect of the Association and then, I hope, chair of the board of trustees of the MND Association.”

In accordance with our governance structure, a chairperson-elect must be elected by the membership 12 months prior to the current chair completing their term of office.

Election resultsMembers voted for their choice of up to three candidates, from a list of five, for election to the board of trustees. Voting was via a postal or on-line ballot.The candidates and results were (in alphabetical order):

Juliet Draper - ElectedRosemary MayesAlun Owen - ElectedJean Waters – Elected (second term)Cameron Wilson

The board of trustees would like to thank all candidates for the commitment to serving people living with MND they have shown by standing for this election.

Alun Owen, who is branch secretary of the Merseyside Branch, an AV and an MND Connect volunteer, said: “My partner lived for only eight months following diagnosis in January 2001.

“I was sole carer – difficult and complicated with a full time job. Like many people with MND, sometimes we seemed to lurch from crisis to crisis but the Association was always there, providing much needed help usually just at the right time.

“My experience is not only intensely personal but I’m an active volunteer. This I think has given me the knowledge and understanding to be an effective and passionate trustee.

“I am thrilled to be elected and I’m looking forward to influencing and improving services for people living with MND.”

Dr Juliet Draper, wrote in her trustee application: “My father had a form of Parkinson’s disease not unlike MND. He lived the last three years with us and our young family 25 years ago.

“My next door neighbour developed the disease in his early 50s and died within 15 months. He donated a lot of money to research and care in MND, and before he died he charged me with seeing that the money he gave went to people who could make a difference to people with MND. I still would like to carry on this mission given to me by a very exceptional man.”

Annual general meetingOur 24th annual general meeting (AGM) was held on 12 September at the Park Inn, Heathrow.

In previous years the AGM has been followed by our annual conference, however this year we decided to cancel the conference due to the possible risk, created by holding large events, of exposing people with MND or their carers to swine flu infection.

Members were encouraged to vote via post or online.

Introducing our new trustees

“I am proud to serve as chair-elect of the Association and then, I hope, chair of the board of trustees of the MND Association.”

Dr Juliet Draper

Alan Graham thanks Helen Clifford-Jones who steps down from her term of office as trustee.

Alun Owen

Mark Todd

research


Modern scientific research is so specialised and multi-faceted that scientists need to collaborate in greater numbers, sharing their distinct knowledge and skills. This is particularly important in medical research into complex conditions such as MND and other neurodegenerative diseases.

I believe that the emergence of these new UK centres, with world-class research facilities, is a

Stepping up the search - funding cutting edge research

Dr Brian Dickie, our director of research development, gives an overview of three exciting new initiatives presently underway within UK universities which are helping to generate the ‘critical mass’ of researchers needed to tackle the challenge of identifying the causes of MND, understanding the mechanisms of the disease and translating this knowledge into promising new treatments.

formally opened by HRH the Duke of Edinburgh in August. In addition to linking clinical research and patient care with new dedicated MND research labs at the Royal Infirmary of Edinburgh, the researchers will work closely with the Scottish Centre for Regenerative Medicine, which specialises in stem cell research.

Edinburgh University is very strong in areas such as neurology, stem cell biology and regenerative medicine and as Prof Siddarthan Chandran,

reflection of the increasing conviction amongst the research community that MND is a disease that can be defeated.

Euan McDonald Centre for MND ResearchThe newest addition to the MND research community is the Euan McDonald Centre for MND Research at the University of Edinburgh,

“We are on the cusp of exploiting an unimaginable resource...”

An artist’s impression of The Maurice Wohl Clinical Neuroscience Institute


Stepping up the search - funding cutting edge research

director of the new MND Centre, explains: “This is a terrific opportunity to make a difference. There has been spectacular progress in stem cell research in recent months. For example, we can now generate motor neurons from a simple skin biopsy, which will help us to model human MND in the lab. We are on the cusp of exploiting an unimaginable resource.”

SiTraNUnder the leadership of MND researcher Prof Pamela Shaw based at the University of Sheffield, the foundations are being laid for a new state-of-the art institute for MND and other motor system neurodegenerative diseases. The £12 million Sheffield Institute for Translational Neuroscience (SiTraN) – scheduled for completion in summer 2010 – will double the amount of laboratory space currently dedicated to MND research in Sheffield and will bring together scientists from around the globe who are committed to finding the causes of, and treatments for MND.

At the official ground-breaking ceremony in July, Prof Shaw said: “I believe that the creation of the institute will enable us to assemble the manpower and funding needed to generate much more effective therapies for patients with MND. MND has been a neglected condition in terms of research funding and the creation of SiTraN will enable us to correct this problem.”

The Maurice Wohl Clinical Neuroscience InstituteKing’s College London has a long and impressive history in neurology, including MND – our first MND Association MND Care and Research Centre opened at King’s College Hospital in 1993. A bold new initiative to develop an interdisciplinary

institute for neurological and neurodegenerative disorders - The Maurice Wohl Clinical Neuroscience Institute - is scheduled to start in 2010 for completion 2012. The £45 million building will house around 250 neuroscience clinicians and scientists, bringing together international expertise in MND, stroke, dementia, Parkinson’s disease and epilepsy.

“If we are going to discover really effective treatments for MND, we need to map out the critical events that cause the disease and work out how to reverse the process,” explains Prof Christopher Shaw, MND researcher and director of the new institute. “By building this institute we will be able to bring together, under one roof, scientists and clinicians who share a common vision.”

Funding and promoting cutting-edge research The development of these new research facilities is a significant boost for MND research in this country, but we must remember that ultimately it is the researchers who will help to unlock the secrets of MND. A state-of-the-art centre is only as good as the talented people based within it and the research work that is being funded.

As one of the global leaders in funding and promoting MND research, the MND Association is committed to funding the highest quality research in the UK and beyond. Our current commitment to funding research projects at Edinburgh, Sheffield and King’s College London alone, totals £3 million. At the same time we’re investing in attracting the best researchers and fostering collaboration between the leading research centres across the globe. It is only by working together that we will defeat this devastating disease.

Dr Brian DickieDirector of research development

More informationFind out more about the research we are funding at the University of Edinburgh, University of Sheffield and King’s College London by downloading our ‘Funding MND research’ information sheet.

Go to www.mndassociation.org/research/ and click on the information sheet icon at the bottom of the page. Alternatively contact our research development

team on 01604 611880 or email [email protected]..

Berlin 2009 – the focus of MND research

This December, researchers, clinicians and health and social care professionals from around the world will gather in Berlin, Germany, at the 20th International Symposium on ALS/MND to discuss the latest scientific and healthcare developments in MND.

We organise the International Symposium every year and it is regarded by the global MND research and health and social care communities as the conference to hear about and discuss advances in their respective fields. The spirit of the symposium is innovation and collaboration and the format of our event provides researchers with the opportunity to forge new national and international collaborative projects with the ultimate aim of understanding and defeating MND.

To find out what’s going on at this year’s conference, log on to the ‘My Symposium’ section of our website to get the latest news and personal opinions from the movers and shakers in MND research. Kelly Johnstone from our research development team will be writing a blog, keeping you up to date with the three-day event which runs from 8–10 December. Her blog will report on the highlights of this year’s conference as well as giving an insight in to what goes on when 800 MND experts are gathered under one roof. Kelly will also be posting photographs on our website which reflect the spirit of the symposium too.

A report from the symposium will appear in the next issue of Thumb Print.

International Symposium on ALS/MND, Berlin, Germany, 8–10 December 2009www.mndassociation.org/mysymposium

The development of these new research facilities is a significant boost for MND research...

getting creative


Throughout the country our branches and groups have tried a number of new initiatives to get health and social care professionals more involved in their work. These include inviting them to their annual general meetings (AGMs) and holding meetings at convenient times and venues.

Branches have to hold an AGM each year to report to members and elect a new committee, but many have gone much further and developed their AGM to raise awareness and influence locally.

Lincolnshire Branch was one of the first to start inviting health and social care professionals to its AGM. The branch attracts a high number of professionals by ensuring that it is always held on a Friday during normal working hours.

“That way, people can put in their diaries, knowing they are not going to have to eat into their own leisure

time to attend. We get between 15-20 health and social care professionals at each AGM ranging from wheelchair technicians to occupational therapists.” says branch chair, Gordon Hickmore.

Having a respected speaker is also a big draw, both for people affected by MND, their families and the professionals involved in their care. In the past they have had presentations from Prof Pam Shaw from Sheffield Care Centre and the Association’s director of care development Heidi Macleod.

Next year Chris McDermot, research head at Sheffield Care Centre, will be speaking.

“Everyone accepts that the business has to be done, but with enough planning that can be completed in about half an hour to make way for the speaker. Organisation is essential for a smooth meeting. As a committee we spend a fair amount of time thinking it through before we put it into action,” adds Gordon.

Gordon also says that forward planning and finding a good venue are two of the most important things about having a successful AGM.

“We always book the venue well in advance. In our case it is the St Barnabas’ Day Centre in Lincoln. It is modern, warm, has disabled friendly access, refreshment facilities and all the necessary technology needed for Powerpoint presentations,” says Gordon.

“We do have to pay for the venue and the refreshments we provide but the costs are well worth it for the number of people who attend. People don’t want to have to sit in a

Getting creativeInvolving health and social care professionals

Branches and groups play a critical role in awareness raising, influencing and fundraising at a local level. Often, contacts made and opportunities taken can grow and make a huge difference to people living with MND.

“Organisation is essential for a smooth meeting.... we spend a fair amount of time thinking it through before we put it into action.”

An Extra Mile Award is presented at the Lincolnshire Branch AGM

Gordon Hickmore, chair

Lincolnshire Branch, with

the local Mayor attending the

AGM


“The MND Involvement Group has encouraged a great crossover in communication and made everything much friendlier.”

cold dusty hall for a couple of hours. The right atmosphere makes all the difference – knowing you’re going to be warm and comfortable with something to eat is very reassuring.”

Refreshments give everyone a good chance to chat and network. “Everyone finds that time very useful. The health professionals can catch up with each other and compare notes, people with MND and their families get the opportunity to talk to all kinds of people. It is a very good social occasion and a great way of establishing and renewing contacts for the future.”

The Hull and East Yorks Support Group runs regular meetings for people affected by MND and their carers. They vary proceedings every other month, alternating ‘ordinary’ get-togethers with the MND Involvement Group.

The involvement group is an excellent way for the Hull Royal Infirmary Hospital and Primary Care Trust (PCT) to get direct feedback about services for people with MND.

Specialist nurse Vanessa Baker

helps run the meetings, which are held at a venue close to the hospital to allow other health and social care professionals to attend.

“The meetings have made a real difference,” says Mike Smith, who has Kennedy’s disease, a slow progressing form of MND. “We get around 30 people at each meeting and always hold them in the afternoons. The time is good both for people with MND and the health and social care professionals. It means people with MND aren’t too tired and doesn’t eat into the personal time of the staff who attend.

“Vanessa has been a terrific help with the meetings. She’s the focal point, particularly for the health and social care professionals. She is involved on both sides – she knows many of the MND patients and her colleagues. Vanessa also acts as secretary for the involvement group.”

After talking with others affected by MND, Mike discovered that the main problem in the area was a lack of communication. “People with MND needed to know more about the disease, the Association, what help is available to them and how hospital and social services could help. The involvement group has encouraged a great crossover in communication and made everything much friendlier.

“Since the meetings have been in place, the PCT has recognised that it has been falling down on the way it communicates the diagnosis in some cases. I got my diagnosis in front of a group of health and social care professionals in a very blunt way. I felt like a specimen on a butcher’s slab and it shouldn’t be like that. It is a very devastating diagnosis and should be communicated with more sensitivity. That’s been accepted and it is being addressed now.”

The opportunity to meet and chat on a regular basis has had positive results all round, and because the meetings are held close to the hospital, consultants and specialists can sometimes pop over without too much disruption to the rest of their working day.

Mike says: “Having Vanessa involved with meetings like this has certainly been a bonus to people affected by MND. It has broken down the barriers and people feel that they can ask questions and get the answers they need.”

Vanessa Baker, specialist nurse, left, who runs the Hull involvement group for people affected by MND

Kath and Brian Bell

People affected by MND at the involvement group meeting

Health and social care professionals attend the Lincolnshire Branch AGM

obituary


Liz had the familial version of MND and had experienced the loss of seven close family members.

Despite this, when diagnosed in 1998 the mum-of-two lived showed amazing determination and always faced her illness with an unfailingly positive attitude.

She was adamant that she would not let MND stop her from living her life to the full, but more than this, caring Liz set herself the task of helping others with MND through the Tyne and Wear Branch and her role as an Association visitor.

She was also dedicated to awareness raising and educating others about MND and was a great ambassador for the Association. She spoke to students studying at Northumbria University and attended a number of other teaching events. Liz never missed our spring conferences or annual general meetings.

When it came to raising funds

to support our work no challenge was too great for fun-loving Liz. Her fundraising feats included abseiling down the Malmaison Hotel in Newcastle, and taking part every year in the Great North Run, including this year, despite her increasing frailty and pushed in her wheelchair by a team of firemen.

But one of her biggest passions

Tributes have been paid to Liz Shipley who died earlier this month after living with MND for 11 years.Liz had a real passion for research and also worked tirelessly to raise awareness and funds for the Association, while providing inspiration and support for others living with MND.Our chief executive Kirstine Knox, members of the Tyne and Wear Branch and eminent MND researcher Prof Chris Shaw are among the many who have paid tribute to Liz.

was MND research. She worked alongside the Association and MND researchers to help drive forward greater understanding of the disease.

She helped launch our DNA bank with Dr Brian Dickie, our director of research development, and MND researcher Prof Chris Shaw. Liz also contributed to the stem cell debate and worked closely with us to raise the profile of MND stem cell research with parliamentarians and

the media. Liz appeared on numerous national news programmes to put forward the case for stem cell research.

Prof Chris Shaw has paid tribute to Liz. He said: “Liz was a fearless ambassador for people with MND and great supporter of research.

“Whether speaking to parliamentarians or in the media, she didn’t shy from the truth.

“She delivered her message with good humour and without self-pity. She worked hard to create a different future for people with MND. She was a Geordie gem who will be sorely missed.”

Liz was a generous and selfless person full of spirit with a great sense of humour – many will recall Harley Davidson bikes and Cliff Richard as just two of her passions.

Undoubtedly Liz will leave a huge gap in the lives of many people, who will miss her lively and caring personality, and the way she lived life to the full, despite MND.

Our thoughts and best wishes are with Liz’s family, in particular her children John and Lindsay.

Read more about Liz on the Tyne & Wear Branch website www.mnd-tyneandwear.org.uk

‘Geordie gem’ will be sadly missed

A surprise visit from Cliff Richard

Liz had a passion for Harley Davidson motorbikes. Here she is pictured with her children John and Lindsay in 2001

Liz with Prof Chris Shaw and Dr Brian Dickie at the launch of the MND DNA Bank.

Each year since 2006 Liz did the Great North Run, pushed in her wheelchair by a team of firemen from Hebburn Fire Station.

Liz Shipley

news


She wrote: “It was lovely having a car collect us from my parents – so much easier than it would have been by train. We enjoyed the views of London as we were driven to the hotel and between venues, particularly Big Ben, the Houses of Parliament, the London Eye, Trafalgar Square and Nelson’s Column. The hotel was wonderfully situated and very comfortable.

“Although I wouldn’t ever have wished for MND, it’s certainly true that despite the limitations it imposes, the prognosis of a vastly shortened life does have the benefit of making me realise just how much goodness there

The group of health and social care professionals had their hard work recognised at the ceremony at the Motorcycle Museum in Birmingham, where the group was one of three finalists in the Success in Partnership Working Award category.

Despite not winning overall, the judges recognised the Network’s

Margaret McIntosh, RCDA, West Midlands South, Laura Pettifer, senior dietitian, Aurora Styles, senior occupational therapist, Margaret Brocklehurst, speech & language therapist, David and Shelagh Suett

Susan with her husband David and daughter Hannah

work by describing that its project ‘delivers impressive results by a group of people making it happen.’

The Network is a multi-disciplinary of professionals and meets every two months. It started out following

MND Network receives NHS recognitionSouth Warwickshire MND Network has received high profile recognition in a health and social care awards ceremony held by NHS West Midlands.

an MND Association study day three years ago, after local professionals became concerned that many people living with MND did not know where to turn for help.

It developed without any financial investment, grants or targets and grew purely from concerns that the standards of care and support, and the co-ordination of patients needed to be raised.

The awards were presented by BBC Breakfast TV presenter, Bill Turnbull at the ceremony at the end of May.

The awards are aimed to identify, celebrate and reward local excellence, as well as to spread good practise. The team was joined at the ceremony by David and Shelagh Suett, who as people affected by MND had supported the group with their submission.

There are a number of multi-disciplinary teams in many parts of the country, and it shows that this hard work has been recognised in making a very real difference at grass roots level for people living with MND.

is in so many people, and makes me feel permitted, probably for the first time in my life, to accept the many gifts which are on offer, such as help from friends and neighbours and the wonderful weekend away.”

The Willow Foundation is a national charity that provides special days for seriously ill 16 to 40 year olds throughout the UK. Special days can be anything from a pampering spa day to a premiership football match, pop concert or family break.

Above all, these special days give people living with life threatening conditions like MND a break from the stresses of hospital visits and

treatment, a chance to feel ‘normal’ and to create precious memories with loved ones. For more information about the Willow Foundation visit www.willowfoundation.org.uk or phone 01707 259777.

Susan is VIP for a day

A VIP trip to London, given by the Willow Foundation, was a wonderful special experience for 40-year-old Susan, who is living with MND, and her family.

The awards were presented by BBC Breakfast TV presenter, Bill Turnbull...

editor’s desk


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 [email protected]

Hello All MouseketeersThe following ‘email’ members would like to make contact with others.

Noel Boland, Gloucestershire: [email protected] Burton*, Mid Glamorgan: [email protected] Coughlin*, Vale of Glamorgan: [email protected] Cowie, Denbighshire: [email protected] Edmands, Surrey: [email protected] Hignell*, South Glamorgan: [email protected] Hosgood-Jones*, Swansea: [email protected] Kanathil*, India: [email protected] Keenan*, Lincoln: [email protected] Knight*, Oxford: [email protected] Mackie*, Fife: [email protected] Mugonyi, Blackpool: [email protected] None*, India: [email protected] Norman*, Great Yarmouth: [email protected] Paterson, Argyll: [email protected] Sedgwick*, Cumbria: [email protected] Shergold, Wellingborough: [email protected]

*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.

Book Review

True Love Cruel FateTrue Love Cruel Fate is Nicola Wood’s tribute to her partner Alan, who died from MND in April 2006, aged 71. Alan had lived with MND for two and a half years. Following his death, Nicola felt compelled to tell their story and though at times her words are emotionally painful they never deviate from the reality of living with MND.

Her frank and moving account covers the whole spectrum of the complex issues that the progression of MND can bring. Individuals who are affected by the disease will no doubt be able to identify with aspects of Nicola and Alan’s experience.

Nicola explained: “Although the thoughts expressed in this book are my own, I have little doubt that they echo Alan’s in so many ways. By telling our story I hope to pay tribute to the man I loved so much – a kind, gentle, wise and thoughtful man with an infectious love of life.”

But this is not just a book for those who have first-hand knowledge of sharing their life with this disease. Health and social care professionals will gain an honest and at times uncomfortable insight into the real need for effective support and care for people affected by MND.

True Love Cruel Fate is available to order from bookshops for £8.99. All copies of the book bought online at www.sevenarchespublishing.co.uk will attract a donation of £1 per book for the MND Association. Copies bought at bookshops and other similar outlets will attract a 50p donation per book. Please note that if bought from Amazon the MND Association will not receive a donation.

Social networking sites:www.build-uk.netwww.healthtalkonline.org.ukwww.PatientsLikeMe.comwww.alschatroom.comwww.Facebook.comwww.MySpace.comwww.flickr.comwww.friendsreunited.com

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

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

Websites:Here are some other 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.orgThe ALS Survival Guide www.lougehrigsdisease.netKennedy’s Disease Association www.kennedysdisease.org.The PMA/PLS Email Support Group. Email [email protected] ALS Society of Canada: www.als.caSupport for carers www.carersuk.org Liam Dwyer, who is living with MND, has developed a new website www.disabled4disabled.co.uk/

Don’t forget that MND Connect - 08457 626262 - is always on hand to offer information, advice and support. You can also email or view our website www.mndassociation.org for further information.

Appreciating the good and the badI would like to say thank you for your magazine and for all that the MND Association is doing. When one has been diagnosed with a serious illness it helps so much to know that there are those who add their support and help to the excellent medical services that we have - compared to what was available when I was young. It also helps a great deal to be able to read the letters of fellow sufferers, their relatives and friends, who are so honest about their situations, and so often are showing great courage.

As a retired vicar I have been with many people with serious illness, and I know how important it is that they have others whom they can trust and depend upon. When we feel that we have that kind of support we can face the problems we have realistically, rather than just denying them.

I have been with many people who have been going through hard times and many have been such an inspiration to me. One lady with cerebral palsy, who has kept in touch over many years has many of the symptoms that I am developing. But she has had these things since she was born, and is now confined to a wheelchair with arthritis and has many other physical problems. She has been hurt by others who have seen her as a nuisance, but she has wonderfully forgiven them and expresses a great deal of love as she looks up. What an example she is to me!

At 71, I realise that my situation is far less difficult than that of someone who has to cope with the illness earlier in life, especially when they have others, such as little children, who are more or less dependent upon them.

As we look beyond the short-term problems, seeing our life as a whole, we can appreciate both the good and the bad times, putting them into context.

As my mouth becomes more paralysed I find it quite difficult to talk. If there is anyone who would like share things I would be very happy to be here for them through email or letters.

My email address is [email protected] May this be a good time in your life,

Graham McNamee


Story was so inspiringIt was inspiring to read the book by Joss and Rosemary Ackland ‘My Better Half and Me’.

Rosemary’s diary showed right from the beginning the humanitarian side of this remarkable lady. When Rosemary was at Cape Town’s University in South Africa in 1948 she had such courage when she, her friend and fellow students ran for their train and saw posters segregating people saying ‘whites only’ so they joined the ‘non whites’ and refused to move. What a girl. She showed the world that we are all people.

The entire book was so uplifting and showed us ordinary folk a side of life that is so removed from our own.

What a joy to read a real love story between two actors. Their huge family and all that ensued made riveting reading, the pictures Joss shared in the book were so wonderful that time after time whilst reading you were compelled to keep returning to them, especially when Rosemary described the many adventures, casualties, and

tragedies that they endured together.This sensational book would make a lovely

film starting with Rosemary’s life in Malawi and Joss’s in his early days as a young actor in war torn London during the Second World War. And, it would be a certainty to uplift the profile of motor neurone disease.

Rosemary described so vividly the agony of suffering from MND, as a suffer myself I have learned there are a hundred different forms of this disease and dear Rosemary suffered a very aggressive form. Rosemary said all that many of us would like to write but have not her talent. She was able to portray the many pitfalls of being so severely disabled.

Rosemary so ably along with Joss showed the magical life of their sincere love for each other and their family.

Susan Jacqueline Theze

Did you know…?Our Association visitors:

• buildandsustainsupportiverelationshipswithpeoplewithMNDaswellastheirfamiliesandcarers

• areprovidedwithfulltraining,supportfromanexperiencedlocalteam,andarereimbursedalloutofpocketexpenses.

Did you know…?

WeneedpeoplelikeYOUtovolunteerasanAssociationvisitor.

For more information, contact the volunteering team, on 01604 611681,

email [email protected] or visit www.mndassociation.org/volunteeering

fundraising


Thirty five people took part, ranging in age from 22 to 60. Over the course of 10 days, they trekked through lush countryside, up tough and narrow paths, through cloud level and high altitudes to Machu Picchu, hidden away in the Peruvian Andes.

“Everyone – without exception – did brilliantly,” says the Association’s Elaine Wyspianski, who supported the trekkers. “It was a really tough event, both physically and mentally and everyone rallied round to keep up spirits. When we finally reached our destination there were tears of joy, relief, shared accomplishment and a shared bond. We cried with each other when words were simply not enough.

“I couldn’t be more proud of their dedication to people living with MND and their total commitment to making a difference. My congratulations to each participant for their amazing achievement. Here’s to our next adventure together!”

Over £160,000 has been raised by our fabulous crowd of supporters who took part in our Inca trek to the lost city of Machu Picchu in September. It’s our top fundraising challenge result so far – a huge thanks to everyone who pushed themselves to the absolute limit!

We came, we saw, we conquered!

Fiona’s storyShe’d never camped before, never left her children for very long and certainly never dreamed she’d cope with a tough trek through the Andes. But Fiona Love was determined to complete the Inca Trail in honour of her mother-in-law Margaret who had MND.

Fiona, 45, was browsing our website when she came across the challenge. At first she was worried about raising the minimum pledge but thanks to family and friends she raised over £16,000.

“The whole experience was absolutely amazing,” says Fiona, who stepped up her exercise regime so she would be able to cope. “When I decided to go ahead, my family was so supportive, including Margaret, who said she wished she could come with me.

“It was an amazing group of people. Everyone had been touched by MND in some way and that made it even more important that we completed the trek.”

Fiona kept a journal throughout the trek, recording her thoughts and feelings as the days went by. “It was a really emotional time. All of us were pushing ourselves physically but emotionally too. At times when someone was down, we supported them and vice versa. The most emotional moment for me was reaching Dead Woman’s Pass – I realised I could do this. Then everything hit home and I cried. When you remember what you are doing this for and why, it makes everything so much more poignant.”

Fiona cites the friendship and camaraderie of fellow trekkers as one of the most memorable things about

“When we finally reached our destination there were tears of joy...”

Fiona Love


We came, we saw, we conquered!

Arctic Challenge When: 21-28 February 2010Registration: £280Minimum pledge: £3,995

Our intrepid challengers are only a matter of months away from the experience of a lifetime – trekking the Arctic with their own team of huskies.If the idea of swaddling yourself in thermals and heading for the unspoilt winter wonderland appeals to you, it might not be too late. If you want to join this amazing challenge, there may still be spaces available.

Mount Kilimanjaro TrekWhen: 16-26 October 2010Registration: £350Minimum Pledge: £3,495

It’s on the wish list of nearly every trekker in the world. Celebrities like Chris Moyles did it for Comic Relief. Here’s your chance to follow in their footsteps and trek Kilimanjaro for us!

Run Morocco When: 12-18 November 2010Registration: £250Minimum Pledge: £1,950

From the foothills of the Atlas mountains to the bustling city of Marrakech…this is the latest in our series of 100km runs! The ultimate push-yourself-to-the-limit challenge for runners.

Great Wall of China TrekWhen: 7-15 May 2011Registration: £250Minimum Pledge: £2,995

Magical, mystical and steeped in centuries of history – China leaves a lasting impression on everyone who visits. Join us on this fantastic trek to one of the Seven Wonders of the World.

the challenge.“You can never underestimate how

words of encouragement and support give others the strength they need. Although it has been tough and challenging, I really really enjoyed it and I will treasure the experience.

“The hardship and difficulties of the trek are nothing compared to those people with MND go through every day. It is this thought that will drive me on to continue to raise money and awareness. I would certainly consider another challenge in the future.”

Fiona wants to encourage others to think about signing up for one of our challenges. “You really don’t know what you can achieve until you try it. We all went through highs and lows but we got there in the end. The shared experience was incredible!”

If our Machu Picchu Trek has left you inspired why not take up one of our other challenges of a lifetime:

Call the fundraising team now on 01604 611860 or email [email protected] for an itinerary and more information on all our events.

Got another destination or challenge in mind? We may be able to help you go where you want to go and take on the challenge of a lifetime with our open challenge series.

“The hardship and difficulties of the trek are nothing compared to those people with MND go through every day...”

Check availability

now!!

Sadly Fiona’s mother-in-law lost her battle with MND just weeks after the challenge event.

fundraising


...a new way to help with this most distressing of symptoms...

Freemasons’ Grand Charity handed over £25,000 to the Association at Freemasons Hall in Northampton

The money, which is the first instalment of a total of £50,000 being donated, will be used to fund a research project to determine how to improve the quality of life and length of survival for people living with MND.

The generous donation will fund a team at the University of Sheffield who will be establishing whether a cough assist machine can offer life-saving health benefits and reduce the trauma of illness, hospital stays and physiotherapy.

If this study proves the device is effective it could offer people with MND a new way to help with this

Tennis ball ball!

A ‘tennis ball ball’ and auction on the eve of the Wimbledon final raised a fabulous £2,435 for the Association. It was organised by Steve Riley, whose company Will to Win runs tennis centres in two London parks. The event was held on a beautiful sunny evening in Hyde Park, with a Moroccan buffet, auction and

Black Tie and Diamond Ball The second annual Motiva Charity Ball took place in May at the Stoke on Trent Moat House hotel in aid of the MND Association.

The event was organised by Clair Davenport whose father died from MND in 2006. Since then Clair has spent all her spare time organising events to support the Association. The night was a huge success with over 300 guests including celebrity Nick Hancock.

The event raised an amazing £17,000, which in line with Clair’s wishes, has been allocated to research.

Black tie and diamonds

Peter and Clair Davenport with Nick Hancock and his wife at the Charity Ball.

most distressing of symptoms, meaning the time they have left is spent as comfortably as possible at home with friends and family, not ill in hospital.

Support from Freemasons

John Hillyer who is living with MND receiving the cheque on behalf of the Association

In memory of Julie

The staff of Atradius Credit Insurance voted to make us their Charity of the Year for 2008 to acknowledge the plight of their colleague Julie Mills, who worked at Atradius for more than 20 years. Sadly Julie was forced to retire at the age of 50 and died in November 2008.

Key fundraising events included entries into the London Marathon and Great North Run by Pete Regan, and Midsummer Madness, a fun time involving a ‘Donut Dunk’ and the immersion of senior manager Marc Henstridge in a bath of ice! Atradius also completed a Brecon Challenge.

During the year over £8,000 was raised for the Association.

dancing to a live band, The Rocky Band. Among the generously donated auction items were tickets and backstage tour at Glyndebourne, a tour of Big Ben, coaching for four juniors at Wimbledon and a Porsche Track Day. Sadly, Steve’s sister-in-law’s mother-in-law, Gillian Buckley, died from MND on the night of the ball.


To date Colin has raised a fantastic £2,621.30.

Tribute funds – the personal touchh

MND Association Tribute Funds enable people to ‘fight back’ against MND by raising funds to support the work of the Association. Suzanne Despard set up a tribute fund for her mother Mary, who sadly died in February 2008, but her tribute fund lives on. Suzanne says: “fundraising for Mum’s tribute fund continues to provide a very positive focus for everyone, myself included. It pulls everyone together for a common cause”.

A tribute fund can be set up to honour anyone special to you. They may be living with MND or perhaps lost their brave fight against it some time in the past – recently or long ago.

People can contribute to a fund whenever and however they want - cash / cheque / credit and debit cards and by post, phone or online. Each gift is recorded in the fund and acts as a tribute to the person in whose name the fund has been created.

Whilst many people undertake a variety of sponsored challenges or events to raise money, a large number like to make straightforward donations to their fund. Sometimes these may be in lieu of presents, or at the time of a special anniversary or occasion. Increasingly, people are setting up regular gifts payable into a fund and allocating donations to appeals directly to their chosen fund.

Supporters receive regular updates on the progress of their fund; the actions we are taking to support people living with MND and the research into treatments and cures.

Every tribute fund has the option to go ‘online’ and have its own website, where family and friends can leave messages and memories, and donate securely to the fund online. Other features include an array of designs, themes and colours to choose from and the ability to upload hundreds of photos, music and even video clips.

There is no cost involved in the setting up or maintenance of tribute funds – we are always happy to create tribute funds, no matter how big or small.

For further information please visit our website www.mndassociation.org/tributefunds or email [email protected] or call him

on 01604 611865.

Congratulations to ‘Shortest Walk’ challengers

Hot on Ashley’s heels: Colin and Alec with grim determination

The importance of these grants cannot be over-stated.

The importance of these grants cannot be over-stated. As Heidi Macleod, our director of care development, comments “These grants from national office, alongside the grants made by our branches and groups, are to provide all sorts of help - from stair-lifts and assistance with respite care to therapeutic pain massage. But what each grant has in common is the power to make a huge difference to a person living with MND and their loved ones.”

The demand for these grants has never been greater - last year we provided 266 grants with a value of

£209,000; this year we have already responded to 340 applications totalling £212,000 and next year, we anticipate a further surge in requests.

The appeal will be mailed to many of our supporters on 10 November and donations can also be made online www.mndassociation.org or by telephone calling on 08453751850 quoting 09NV.

To find out more about how to request a grant, please contact MND Connect on 08457626262 or email us at [email protected].

Next month we launch our Christmas appeal called Lighting up lives at Christmas. This aims to raise £283,000 for the grants that national office makes to people living with MND and their carers.

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

Congratulations to our intrepid ‘Shortest Walk’ challengers, Colin Moss and Alec Jenkins who successfully walked 440 yards and 250 yards respectively on the 30 August in Forbury Gardens, Reading in support of our 30th

anniversary. To date Colin has raised a fantastic £2,621.30. More details on this and the year’s Walk to d’Feet* MND activities will appear in our next edition of Thumb Print.

down your way


Lodge presentation. North and West Cumbria Branch received £375 from Andrew Lister in memory of his grandfather who died from MND. He made the cheque presentation to mark his installation as Master of Ennerdale Lodge of Freemasons.

It was a beautiful place for a presentation – overlooking the lake at Ennerdale. George Bruce accepted the cheque on behalf of the branch. Also present were vice chair Eric Tiffin, Freda Tiffin and committee members from the Wigton area.

Tempting fete! A class of enterprising 11-year-olds ran a summer fete at their school and donated half the proceeds to the King’s Lynn Branch. Young Oliver Gamble from Year 6 at Tilney St Lawrence Primary School presented them with a cheque for £320.

The branch also benefited from another £900 – the proceeds of its sixth four-mile Walk to D’Feet* MND around the town.

Running hot. This day wasn’t just fine, it was sweltering when Lesley Ralston’s god-daughter Julie and her husband Mark ran the London 10k in July.

The pair were taking part in memory of Lesley’s husband Derek who died from MND last year. She took on the role of Mary Poppins for the day, following the runners along the route with nine-year-old Jenna and Aaron, 14, as cheerleaders.

“We had lots of fun getting excited every time we saw an MND T-shirt and made sure everyone knew it!” says Lesley. “We walked here, there and everywhere following the runners and cheering them on. Just over an hour later we made our way to Whitehall to be at the finishing line when our heroes came through.”

First run. Jenny Snelling, niece of newly elected trustee Alun Owen, ran in the Bristol half marathon raising £342 for Merseyside Branch in memory of Ken Boylan who died in 2001. She completed the run (her first) in 2 hours 30 minutes.

A day at the races. Nominated by the sponsors Don Noble Bookmakers as the chosen charity, the Lincolnshire Branch enjoyed a great day at the race meeting at Market Rasen raising over £900 from very generous racegoers.

This was a fitting climax to a month of fundraising when during awareness week the branch had raised over £2,000 from collection days at Tesco stores and a donation of £1,600 from the Grantham Inner Wheel. From left: Sandra Butterton, Gordon Hickmore, Dee Rance, Barrie Butterton, Richard Noble

Racing for Robert. Clare Golbourn got together a team of family and friends for the Bewl Water Dragon Boat Race and raised over £2,000. She organised the fun in memory of her dad Robert.

Market stall. Ted Parr’s summer stall in Pwllheli Market which, over six years, has earned almost £14,000 for the Gwynedd and Ynys Mon Branch.


Raising awareness in Kent. The Kent County Show proved a popular location for raising awareness of MND. This year, Eastern and Coastal Kent Community Services and East Kent University Hospital Trust used the day in Maidstone to flag up the services they offer to local families affected by MND.

Dr Mohamed Sakel, Director of Neuro-Rehabilitation and Director of Research and Development for the East Kent University Hospitals Trust, decided to wear our Association T-shirt and brought his family along, all wearing the shirts too! Dr Sakel also leads the East Kent MND team.

Marvellous Mia. Enterprising eight-year-old Mia Jacobs persuaded her kick boxing club to adopt the Association as its charity of the year – raising £873 for the Staffordshire Group.She encouraged the club to raise money after writing a letter about her great uncle Steve Collins, who was living with MND.

His widow Val says: “We are so proud of Mia’s achievement. In the letter she put that her great uncle Steve was no longer able to speak, eat, drink or use his hands and that she missed playing with him.”

Canal – by cycle! Keen cyclist Colin Dobson cycled the entire length of the Leeds to Liverpool canal and back in an amazing 22 hours and 38 minutes. He now holds the record for the fastest time to complete the 255 mile route. Colin raised £2,600 for the Brenda Fox Tribute Fund. He’s now an old hand at these epic rides – last year he cycled from Land’s End to John O’Groats.

Raft race. Around £10,000 has been raised for Coventry and Warwickshire Group thanks to the Wellesbourne & District and Shakespeare Lions Raft Race. The group was chosen as the

In memory of Alan. She’s the lady captain and her son is club captain at Burnham on Crouch Golf Club – so it seemed fitting that the club’s charity day should benefit the Association.

Maureen Turner lost her husband Alan to MND in 2006 and together with son Andi they decided to do something in his honour. Over 100 members and friends turned out to play 18 holes and the day raised over £3,500 for their local branch.

Beavering away. The local Beavers colony made cakes and served teas at a meeting of the Sturry Support Group. The youngsters, aged between six and eight, were delighted to be able to take part and were fascinated by the Lightwriter and Bi Pap machines used by people affected by MND. The Lord Mayor and Lady Mayoress also attended at the invitation of Brian and Diane Sackett of the East Kent Development Group. Sadly Diane recently lost her battle with MND.

Lions’ charity for the event. Fifty one rafts took part in the seven-and-a-half mile race, with the majority of competitors wearing MND T-shirts!


Legacies provide over a third of our annual income

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

We need your support to help us continue our vital work

Regi

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ed C

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4354

For more information and to request a free Legacy Information pack, visit: www.mndassociation.org/legaciesAlternatively, please call Stephen May on 01604 611865 or email [email protected] Please quote reference 09TPAU .

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


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Visit the factory or arrange a home demonstration

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E.mail: [email protected]

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Our converted range includes: Nissan X-Trail, Volkswagen Sharan, Fiat Multipla. The Peugeot Partner Tepee, Volkswagen Caddy Life, Volkswagen Caddy Maxi, Kia Sedona

are all tested to carry and restrain a 190kg wheelchair.

Please send me:

information about MND

information on the work of the Association

information on how to become a volunteer

a membership form

I am a: person with MND

carer

health and social care professional

other

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

Legacies Personal tribute funds

Gift aid Give as you earn

Fundraising

I enclose a donation of £

For credit card donations telephone national office: 01604 250505

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

NAME

ADDRESS

Postcode

Email

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.

Information, advice and supportl MND Connect

l Printed publications

l Educational opportunities and service development advice for healthcare professionals

l Direct contact with a network of Association visitors, branches and groups and regional care development advisers

Equipment loanl A range of care equipment can be loaned to enable continuing

independence and comfort for people with MND

Financial supportl 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

REGISTERED CHARITY NO. 294354

✂

The MND Association offers a wide range of

services for people living with MND, their

carers and health and social care

professionals.

Information, advice & supporton all aspects of MND

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

website: www.mndassociation.org

ThumbPrint Autumn 2009

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Transcript of ThumbPrint Autumn 2009