thumb print spring 2011

The magazine of the Motor Neurone Disease Association

Thumb PrintSpring 2011

• Volunteers provide a five star service• We need your support – Pass it on campaign

inside

contents

02 thumb print Spring 2011

4News The latest MND news and what it means to you.

8The Broad Appeal Cricketing family the Broads are raising money and awareness for the Association.

9Incurable Optimism on tour Patrick’s portraits are being exhibited across the country.

10Growing communityOur online forum is proving a huge success with a steady growth in the number of members.

12Going the extra mile Awarding the health and social professionals who pull out all the stops for families with MND.

13Focus on We talk to Prof Siddharthan Chandran, who is leading the Association’s first and largest stem cell research programme.

14Communication mattersFrom low-tech alphabet boards to high-tech computer software, your experiences could help us shape our care information.

15Making our voice heard Lobbying politicians in the lead up to the Wales and Northern Ireland elections.

16Stem cells: investing in the futureSo much hype, so much hope, but how far has the science actually come and where do we go from here?

18Pass it on It’s easy to support our latest campaign – spread the word and make a difference.

20Telling it as it is Readers share their personal experiences of living with MND.

24Five star service “She is a star – in fact I’d give her five stars!” Salah El Massouri praises his Association visitor.

26The running bug Sarah Fraser explains how she’s able to use her hobby to raise funds for a cause so close to her heart.

28Country diaries Extracts from Colin Luckhurst’s Guardian column.

30Down your wayA selection of your fantastic fundraising achievements.

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Cover image: Salah El Massouri, who is living with MND, shares a joke with Andy Pape from the South London Group. See page 24.

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by the disease in England to inform us of their experiences of NHS changes to add impact to our campaigning activities, see page 15.

However, we all recognise that greater awareness of MND is vital if we are to make our voice heard. Our Pass it on campaign, see centre pages, offers a new way for all members to help us spread the word to even more people, simply by handing out booklets to family, friends and colleagues.

Please support this campaign – every booklet you pass on will make a real difference for all those affected by MND.

Thank you for your continued support.

Dr Kirstine Knox,Chief Executive

chief executive

thumb print Spring 2011 03

Diarydates2011/12

Demand for our support services is increasing.

Last year we answered 10,000 calls and emails to MND Connect, provided financial grants to 1,231 people and loaned hundreds of Lightwriters and riser-recliner chairs.

We know demand will continue to rise as we strive to fill the growing gaps resulting from NHS and social services cuts. It is clear that we will not be able to sustain an increase indefinitely.

So how do we use the resources we have available wisely to grow and deliver our support services, while keeping our research programme pushing ahead? We are a forward-thinking organisation and can see exciting new opportunities to explore in this changing environment as we consider our relationships with statutory services.

MND is a complex and challenging disease but what makes us unique is that we are guided by the needs of people affected by the disease. We work hard to understand those needs and that’s why we are the experts in MND.

When members told us they wanted an online forum we listened. You can read about the success of our growing online community, page 10.

While we lobby politicians ahead of the Wales and Northern Ireland elections, we are asking those affected

Walk to d’feet* MND††

All year round

Spring ConferencesBristol 8 MayReading 15 MayCambridge 22 May

London Marathon††

London 17 April

Trek The Great Wall of China††

China 6-15 May

Study Day for Healthcare Professionals*

Birmingham 14 June

MND Awareness WeekNationwide 18-26 June

10k British Road Race††

London 10 July

Annual Conference and AGM*

Stansted 10 September

Mount Kilimanjaro Trek††

Tanzania 5-15 October

International Symposium on ALS/MND*

Sydney, Australia 30 Nov -2 December

2012Machu Picchu††

Peru 12-21 May 2012

*Enquiries to the conference team on 01604 611845.†† Enquiries to the fundraising team on 01604 611860.

Contact usThumb 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 Paula McGrath, Editor, Thumb Print, MND Association, PO Box 246, Northampton, NN1 2PR. Telephone 01604 250505, email [email protected]

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.

Challenges and opportunities

From our chairman

This has been an exciting and rewarding three months. The Secretary of State for Health’s visit to our Care Centre in Cambridge was an opportunity for a number of those affected by MND and those providing care to explain our work to the architect of the radical health reforms that lie ahead of us. We have built on that work since then strengthening our contacts with the Department. You will read more about the visit on page 7. You will also see coverage of our award for the marvellous Incurable Optimism campaign. Congratulations to all those involved and particularly to Patrick.

The cycle of regional meetings held by Kirstine and I reached London where a number of branch members gave up their Saturday morning to meet us. There were lots of positive ideas stemming from branch successes, some evidence of how health and social care decision-making is affecting people locally and a couple of areas where we need to think harder about ‘national office’ policy and services and their impact on branch work.

It was tough assembling our budget for this year. Our spending has risen sharply in the last couple of years. We must secure the charity on a sustainable basis in what will be demanding times while protecting the spending at the heart of our purposes. We have been extremely successful both locally and nationally in raising funds to meet the priorities demonstrated in our surveys of those with MND. However parts of our income – particularly legacies – are more volatile. Demand for direct support from the charity has increased sharply as our profile has been raised and as our relationship to statutory support has grown tighter. Perhaps the most difficult, and unwelcome, decision the board made was to freeze the salaries of staff this year. The Association’s staff are critical to the delivery of our goals and the board was conscious of the message that could be given by this choice. This one-off measure will help to protect our spending on support for those with MND and our increasingly fruitful research programme.

Finally, our board met. Following the recent death of Alan Horwell, board members personally acknowledged the contribution the former Vice Chair of Trustees had made to the Board’s work, to national office and to the wider Association (see obituary on page 32).

The board approved four grants for care centres, for a new centre in Bristol and continued funding for Manchester, the National Hospital in London and Cardiff/South Wales. The board also agreed to proposals for a one-day AGM.

Read more at www.mndassociation.org/boardreport

Mark Todd Chairman, Board of Trustees

Our Incurable Optimism campaign has won a Chartered Institute

of Marketing Award for best creative campaign at the Marketing Excellence awards in London.

We launched the awareness campaign during MND Awareness Week in June 2010. The campaign features artist and father-of-three Patrick Joyce and his challenge to paint the portraits of 100 incurable optimists before MND takes away his ability to paint forever.

It focuses on highlighting the amazing and positive spirit of people within the MND community and how it is through this spirit that MND will be beaten.

Massive billboard posters of Patrick spreading our message of incurable optimism appeared across the London underground and National Rail Network in England, Wales and Northern Ireland. Adverts also ran in the Daily Mail and Mail on Sunday. Press coverage of the campaign was extensive with over 40 pieces of press coverage including features in The Sunday Times, The Sun, ITV and BBC.

Patrick said: “Through our campaign we wanted to show that behind the horrible statistics there are people

Award win for Incurable Optimism

fighting to stop this disease, people giving up their lives to care for the sufferers and people living with it, with dignity, fortitude and a sense of humour.

“The campaign has been a big part of my life over the last year. The reason I am doing this is simply to raise awareness of MND. I firmly believe that every new person who knows about MND helps us to raise more money, relieves the suffering of those affected and drives the search for a cure. Winning the award is brilliant but the reason I am doing this is for my fellow sufferers, and to inspire people to help us.”

Kirstine Knox, our Chief Executive added: “This is a fantastic achievement. The talent and commitment of everyone involved in creating the campaign has been incredible.

“I would especially like to thank Patrick. He has devoted himself to our message of incurable optimism and to raising awareness of MND. Like Patrick I am proud to be an incurable optimist and firmly believe that by working together we will beat this devastating disease.”

Read the latest on Incurable Optimism – see page 9.

news


The Incurable Optimism creative team receive the award from comedian Dominic Holland, left.

Mark Todd


The Association has played a key role in shaping the future of

international research by bringing together 60 of the world’s leading stem cell research experts to agree key areas of investigation in this exciting field of MND research.

For the first time, experts from 14 countries convened at a two-day conference in New York in January. The conference was organised by the Association in conjunction with the UK National Stem Cell Network; the Canadian Stem Cell Network; the New York Stem Cell Foundation; and the ALS Association of the USA.

Delegates ranged from researchers who specialise in using stem cells to study MND in the lab, to representatives from companies who are leading the way in stem cell transplant trials in MND, to neurologists who have direct experience of stem cell clinical trials.

Dr Brian Dickie, our Director of Research Development, explains: “It is so important to bring together the key people working in this field at this early stage, to share their

Funding the research pioneers of tomorrowWe will shortly be launching our latest research appeal which focuses on our funding of the best MND scientists, irrespective of geographic location.

Good researchers are essential to good research. We need to continue to develop the UK MND research capacity by both encouraging established scientists from other fields of basic investigative research and medicinal chemistry, as well as by attracting more young scientists to develop careers in MND research.

The Association has a strong track record of supporting the ‘fledgling’ careers of researchers, supporting PhD students in order to attract and train the most promising young scientists into a career in MND research.

We are also funding the next generation of scientific leaders through our Fellowship Programme, training a new generation of clinicians in scientific principles and practice to fast-track promising new treatments from the lab to the clinic.

Our third level of support is at a very senior level where directed funding will assist in cementing a long-term multidisciplinary ‘critical mass’ at emerging centres of excellence for MND research.

We want all our funded scientists to dedicate their careers to MND research and our funding programme is the most effective way to achieve that aim. By investing in and supporting the very best scientific minds today, we can all work towards a future with effective diagnosis, treatments, and perhaps one day a cure.

The Challenges Appeal, which aims to raise £50,000, will be landing on your doormat at the beginning of May. Please look out for it or donate by telephone, on 0845 375 1850 quoting 11FB or visit www.mndassociation.org/2011challengesappeal

Please give whatever you can to this vital appeal.

“It is so important to bring together the key people working in this field at this early stage...”

MND stem cell conference a success

knowledge and experience, so we can move this field of research on as quickly as possible.

“By bringing together international experts in this way, a consensus on the steps needed to progress this area of MND research has been agreed while possible research collaborations have been explored.”

A common understanding of the challenges and opportunities in stem cell research will also help major funding agencies like the Association and the ALS Association to work together in even greater partnership to help researchers, so that aspects of exciting research are not delayed.

Learn more about our stem cell conference and get behind the scenes of MND research by reading our blog at http://mndresearch.wordpress.com. Follow us on Twitter @mndresearch

Dr Martin Turner, a Consultant Neurologist at Oxford University, is studying a large group of people living with MND looking for markers of disease activity that might improve diagnosis and drug trial monitoring. This is a study sponsored by the MND Association’s Lady Edith Wolfson Fellowship, in conjunction with the Medical Research Council.

Every six months, patients undergo research MRI scans of the brain, which has already provided some promising results, but another important and exciting part is the collection of samples of cerebrospinal fluid (CSF). This is a clear watery fluid which bathes the brain and spinal cord, and may supply much needed MND ‘biomarkers’. CSF can be quickly and harmlessly taken in a simple procedure called a lumbar puncture, carried out personally by Dr Turner.

Can you spare a few precious drops?

The study needs more samples from healthy volunteers (who only attend once in the study) to compare to the many samples already collected from patients. Volunteers need to be of similar age to MND patients (generally over 40), though not relatives, and must not be being treated for any chronic illness themselves.

If you think you might be willing to help with this research then please log on to www.biomox.net to find out more.

Dr Martin Turner

news


Raffle fundraiser is just the ticketFollowing the great success of our 2010 Association raffle, which raised in excess of £122,000 for care support services and research projects, our 2011 raffle is due to be launched in June.

Every ticket sold will help raise much needed funds for people living with MND both now and in the future.

Last year, raffle participants like you helped sell thousands of tickets, providing emotional, practical and financial support to people with motor neurone disease and their families as well as funding essential research.

Your 2011 raffle ticket allocation will be included within your Summer edition of Thumb Print.

If you have any questions regarding our 2011 raffle please call 01604 611699 or email [email protected]

Malcolm Watkins, the Association’s Director of Finance, has announced his retirement.

Malcolm originally joined the Association in 1999 in that role. He has also taken on particular responsibility for high value fundraising, working closely with the Fundraising Team. Malcolm undertook the role of Acting Chief Executive on two occasions – in 2005 and again in 2007.

He has made a huge contribution obviously in managing the Association’s finances as the charity has grown and developed but also in ensuring that we comply with both the law and best practice in managing our affairs.

Malcolm has been a personal guide and contributor to wider policy both in the Board of Trustees and the Directors’ Team. His work with major donors has been extremely valuable. We are very grateful that he will continue to work with us after his retirement.

Dispatches on Channel 4 has examined end of life and

palliative care for terminally ill people. The programme, in March, featured three individuals who are nearing the end of their life, including Annie Walters, who was diagnosed with MND five years ago. The Association put the programme’s producers in touch with Annie.

The three people featured in the documentary and their families were given cameras to record their end of life care and support. In each case care was found to be lacking. Annie was filmed trying to find somewhere to live that is able to care for her needs.

Annie’s experiences highlight why good quality end of life care is so vital. Currently, end of life care for people with MND is largely inadequate and there is no national guidance on standards of care. Last year the Association was disturbed at the findings of a Parliamentary inquiry into specialist palliative/hospice care for people with MND.

The inquiry by MPs and Peers found that access to services is patchy, services are fragmented and funding is under pressure. Access to palliative care remains a postcode lottery for many people with MND, with some people receiving excellent palliative care, whilst many others do not.

We are campaigning for all people with MND to get access to high quality specialist palliative care so that they can maximise their quality of life and achieve dignity in death. We are calling for the Government to implement a number of recommendations to reduce the amount of suffering people with MND endure as a result of this devastating disease.

Meanwhile, in January the Channel 4 programme 4 thought TV featured

Examining end of life and palliative care

Farewell to MalcolmBy Mark Todd, Chair of the Board of Trustees

“We are campaigning for all people with MND to get access to high quality specialist palliative care.”

a number of people sharing their views whether euthanasia should be legalised, including two people with personal experience of MND.

Lesley Close spoke about her brother John’s diagnosis of MND. In 2003 Lesley accompanied John to a suicide clinic in Switzerland. Lesley has spoken publicly about John’s decision to end his own life on several occasions and believes that people should have the right to choose themselves.

Michael Wenham, who is living with MND, also shared his views on the controversial issue. Michael spoke against euthanasia, saying that the way forward is being pioneered by the hospice movement and the enormous advances in palliative care.

The Association neither supports nor opposes a change in the law on this issue. It seeks to support all people with MND and their families and friends, irrespective of their personal beliefs on this deeply sensitive and personal issue.


Minister visits MND care centre

Secretary of State for Health and local MP for Cambridgeshire,

Andrew Lansley, has visited our Cambridge MND Care Centre to meet with people living with MND.

During the meeting Andrew Lansley asked about the current commissioning of services for people with MND. Currently primary care trusts (PCTs) are responsible for planning and buying local services (commissioning), but the coalition Government’s reforms will see groups of GPs taking over this responsibility from 2013. With the planned abolition of PCTs and a move towards GP commissioning, we are determined to ensure that services for people with MND will be equipped to meet their needs.

Our Chief Executive Kirstine Knox, spoke at the meeting about how services in many areas have not worked for people with rarer diseases like MND.

Kirstine said: “In areas where there are clinical champions, care for people with MND is good. However nationally, care for people with MND is largely inadequate and there is no national guidance on standards of care. We know that good care keeps people out of hospital. We also know that poor care places a significant

strain on the NHS and has a severe impact on the wellbeing of people with MND and their families.”

With the help of some people living with MND who attended the meeting we sent some questions for Andrew Lansley to Radio 4 as he was appearing on the station later on that day. Out of the thousands of questions submitted Radio 4 selected Terry Robert’s question to pose to

Andrew Lansley on air. Terry asked: “On Friday you will

be visiting the MND Care Centre in Cambridge. You will see the high level of care people like me require, with the disease affecting pretty much every part of my body. How will you ensure that difficult and rare diseases like MND will be well managed in the new NHS when a GP will only ever see one or two people with MND in their career?”

In reply Andrew spoke about his meeting with the MND Association, patients and professionals and said: “I’m not looking for individual GPs to be commissioning services for these kind of complex, neurological conditions. Rather I’m expecting GP consortia on a much bigger scale or for more to come together in a broader network to commission services.

“There is also an opportunity for some of the voluntary sector to put themselves forward, like the MND Association, MS Society and Parkinson’s UK have done to form a commission support organisation Neurological Commission Support. I think that presents a real opportunity for us.”

He was urged by patients and professionals to support the development of MND services across the country in order to reduce the suffering of people with the disease.

Secretary of State for Health Andrew Lansley, second from right, meets people with MND at our Cambridge MND Care Centre

Have you ever wanted to experience one

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It’s not too late to join one of our exciting

overseas treks…

The Great Wall of China

6-15 May 2011

London to Paris – Cycle Challenge

24-27 June 2011 and 9-12 September 2011

Machu Picchu – Lost City of the Incas

12-21 May 2012

Visit www.mndassociation.org for full

details or call 01604 611860 now…and

secure your place.

Make 2011/12 a life-changing year to remember!

Registered Charity no. 294354

Iconic locations -incredible adventures

news


Cricketing family launches appeal

Following the death of his wife Miche from MND, former England

Cricket International Chris Broad and his two children, England fast bowler Stuart, and England team performance analyst Gemma have launched The Broad Appeal to raise money and awareness for the Association.

In May 2009 the Broads received the devastating news that Miche had MND. During her illness Miche was dedicated to do whatever she could to help others living with MND. Over a number of events the family raised over £60,000 to invest in research into the disease.

Miche courageously battled the disease for 14 months until her death in July 2010. Now the family is honouring her memory with their own battle to beat MND.

The family launched The Broad Appeal at Lord’s cricket ground in February to the media. During the interviews, including Sky News and 20 radio interviews, Chris, Stuart and Gemma explained how they are determined to do whatever they can to raise awareness of MND. The family spoke about how shocked they were at Miche’s diagnosis and how they had

never heard of MND. Now, they are determined to help spread awareness of the disease and help push forward research.

Journalists from national newspapers including The Daily Telegraph, Daily Mirror and News of the World attended the launch.

During the interviews Chris said: “We want to do our bit to get the message out there – it is a terrible disease, and it’s incurable and we need to do what we can to help.”

Stuart added: “The most important thing is actually raising awareness of the disease. When Miche said she had MND I didn’t know what it was. When I saw how it affected Miche it really opened my eyes to it. So the awareness is very important to us but obviously we’d like to raise money along the way.”

The Broad Appeal will be organising

a number of fundraising events across the country in 2011, including ‘An Evening with Chris and Stuart Broad’, a race day, a sportsman’s dinner at Lords and a pro-am cricketing tournament.

Stuart said: “We are really excited about what we can achieve. We received great support last year and if we can do the same this year we’ll achieve great things.”

Chris added: “Miche was the most amazingly strong and resilient woman I have known. When she was diagnosed with the disease she didn’t crumple into a heap and give up on life. She made a conscious effort to live life to the full and indeed started planning things that she’d always wanted to do.

“I have rarely been someone who goes out of my way to help others, but things happen in our lives that leave indelible marks and this disease and the effect it has on individuals and their families has left an indelible mark on mine. MND is a killer and we want to do our little bit to help find a cure.”

For more information on The Broad Appeal, or to make a donation, please visit www.thebroadappeal.org

“We want to do our bit to get the message out there – it is a terrible disease, and it’s incurable and we need to do what we can to help.”

Gemma, Stuart and Chris Broad

Stuart Broad

Miche Broad


awareness campaign

Patrick’s portraits on tour

Over the past year, Patrick Joyce has been painting portraits of

incurable optimists to raise awareness of MND.

Through fronting our campaign, Incurable Optimism, the father-of-three is helping to spread a message of optimism and hope for the future. The campaign has touched many people across the world – the Australian MND Association has even put out a call for incurable optimists and will be launching its own Incurable Optimism campaign this year.

Patrick and his family continue to be featured in the media and recently were filmed by BBC Bristol and Oxford television.

Now at portrait number 18, Patrick has just completed painting one of the most famous people currently living with MND, the eminent physicist Prof Stephen Hawking, who supplied the quote “Intelligence is the ability to adapt to change.”

International tourThis year will see Patrick’s portraits exhibited across the country with many people putting on their own exhibition.

From April exhibitions will be held in a variety of venues including a café

a school, an art gallery and even a football ground!

Confirmed exhibitors so far range from volunteers and people personally affected by the disease to those who had never heard of MND until they saw the billboard posters or started following Patrick on the social networking site, facebook. Proving that our campaign truly has gone global, exhibitions are also due to be held in Sri Lanka and Mexico.

If you would like to hold your own exhibition of Patrick’s portraits please contact Mel Barry, at [email protected]

Patrick’s gallery reaches portrait 18

Portrait 17:“Pauline’s husband died of familial MND. Since then she has raised a huge amount of money every year, £100,000 in total, determined that a cure will be found before her children are old enough to die from it.”

Portrait 18:“Stephen Hawking is a world renowned theoretical physicist and cosmologist. He also has MND. The fact that he has achieved what he has, speaks volumes for his courage and optimism. He’s a hero, and he’s our hero.”

Fighting MNDPatrick has joined forces with his neurologist and neuroscientist Dr Martin Turner, to hold an exhibition entitled Incurable Optimism – two different ways of fighting MND.

The exhibition will be held at Oxford University Museum of Natural History from 31 March-6 May 2011. During the exhibition volunteers from our Oxfordshire Branch will be on hand to speak to people about MND and the role of the Association.

The incurable optimism exhibition is the story of two men, both incurable optimists, united in their fight against MND. The artist and doctor present their two very different approaches to fighting MND in this inspirational exhibition.

Patrick’s portraits of incurable optimists highlight the amazing and inspirational people within the MND community. Exhibited alongside the portraits is Martin’s research work including MRI scans and the results of his team’s biomarker study that could dramatically improve our knowledge of MND.

A special opening event attracted many high profile MND researchers including our president, Prof Colin Blakemore, who gave an opening speech.

New DVDsWe have produced four and ten-minute DVDs of Patrick’s story and the importance of raising money to support our work. View the films at www.patricktheoptimist.org. For copies of the film to use at events or meetings please contact Tina Downs [email protected]

Keep up to date with Incurable Optimism at www.patricktheoptimist.org

“The campaign has touched many people across the world...”

Patrick Joyce and his wife Cathy


online forum

We are delighted with the response to our new online

forum – more than 2,101 messages have been posted since its launch at the beginning of December.

Some 230 people have already registered at http://forum.mndassociation.org to share experiences and support each other with the challenges of living with MND, and this number is growing on a daily basis. So far we have had 11,548 visits to our forum by 2,907 different visitors.

The forum provides an important addition to our website, complementing our MND Connect telephone and email services. It will also help influence the development of our care information.

Robyn Copley-Hirst in our national

care team, co-ordinates the forum, supported by a team of volunteer moderators. The moderators regularly visit the site during the day and evening to ensure the forum remains a safe and supportive community for our members at all times.

Robyn said: “The online forum provides a great way for people affected by MND to connect with people in similar situations. Many of our members are already making new friends. This can be such a help if you are feeling isolated and want to talk to people who understand your situation in every day life.

“We also have many carers, of all ages, who are finding support from others who can empathise and give practical

advice from their experiences.“You do not have to post a message

to belong to the forum community. If preferred you can simply look at what issues are important to other people affected by the disease. However, the more people who get involved and participate, the bigger and better the community and the support it provides will be for everyone.”

The first few months have seen a steady growth in interest with an average of 20 posts a day and around 850 visits a week. The forum has shown a wide appeal with members aged from 18 to 86, a mix of carers and those living with the disease, including many who have never posted on a forum before.

Threads, or topics, have included discussions about research, tips on travel arrangements, how to deal emotionally with being diagnosed as well as light-hearted conversations about favourite films, music and individual interests.

“... more than 2,101 messages have been posted since its launch.”

Our first MND Association online forum was launched in December as a direct response to requests from people living with MND, and it’s already proving a huge success.

Growing community offers online support


“Joining the forum has given me a sense of perspective about my disease.”

“There is a sense that we are all in this fight together and we must support each other whenever we can.”

Find out more:Visit our forum at http://forum.mndassociation.orgEmail [email protected] or phone MND Connect on 08457 626262.

Case study 2:

Knowledge is power

Former chartered accountant Jacqui was diagnosed with MND in March 2010. Her passion for barbershop singing means the loss of the power of speech is the hardest thing to bare.

“I am already a member of two US-based forums, patientslikeme.com and ALS TDI, and thought the MND Association forum would offer a welcome UK focus.

For me knowledge is power. Forums offer another tool in my arsenal for learning about treatments, trials and other helpful ways of managing disease progression, so enabling me to sharpen the focus of questions for my neurologist. They also offer me a chance to post information that I hope is encouraging to others, which gives me some sense of self-worth. But (and there is a serious ‘but’) it is important to seek expert advice regarding some of the ‘alternative therapies’ discussed, especially regarding stem cell treatments.

It is a useful way to get support but by no means the only way. For me personally, the best support is

Case study 1:

A sense of perspective

Clive has lived in the UK, southern Rhodesia and Spain. He retired 11 years ago following a career in project management.

“Being diagnosed with MND was the most devastating experience of my life. I had never felt so alone before. My consultant was very insistent that I should make myself known to the MND Association and become a member. I read everything I was sent and spent time on the website.

Joining the forum has given me a sense of perspective about my disease. I discovered that I am not alone, that there are others in a worse condition than me, that we are all on the same route but our paths are not identical, that life expectancy may be better than I thought.

The forum is a place to ask questions and receive answers about the many things that affect our

lives. I have been amazed to find out how very optimistic some patients are. Joining the forum and participating has been a very beneficial experience for me.

I try to visit the forum every day. We now have sufficient members to have a meaningful discussion on many topics and we are able to share information about our condition, support in the community, benefits and how to

access them, mobility problems and all those things that are of mutual interest to those with MND in the UK.

Making friends on the forum is not difficult. There is a facility to send a private email to any member so you can have private conversations that do not appear on the site.

The forum is a brilliant way to open up a difficult subject, which can be difficult to talk about in the company of friends and family. Being able to talk about it among a sympathetic community is very liberating. There is also much optimism in the forum and even a fun element as members talk about films, books, music and other interests. The forum is definitely not a place for doom and gloom.

I would urge anyone who has the disease or is caring for someone, to join the forum. The members are nice people and they will not be critical of spelling, grammar and all that stuff that might make you hesitate to join. Being part of the online MND community will be beneficial, so go for it.”

provided by members of my local MND branch, the multidisciplinary clinic and family and friends. I need the human touch!

I tend to read more than I post and am most interested in technical discussions rather than ‘softer’ issues. One regret I have is that I did not register using my own name because I find it less personal addressing folks with daft titles.

Every forum has some seriously crabby, sceptical people that undermine all MND

developments. There are also some incredibly sad posts, especially by the young and those just diagnosed. You learn to recognise the sceptics and ignore them but I still cry when I read the second.

Still, on the whole I find the forum community to be positive. There is a sense that we are all in this fight together and we must support each other whenever we can. I love reading the ‘good news’ stories and research advances, amazing fundraising events, silly jokes...

I would definitely recommend joining a forum as the personal advice from other MND sufferers is invaluable. However, you do need to be careful about what you read (look carefully at the title and tags).

I’m delighted to see the MND Association forum get off the ground. Now let’s see how much more knowledge we can share over the internet.”

Clive

Jacqui, right

care


Going the extra mileHealth and social care services may be changing, but we discover the dedication of the professionals who support those living with MND is not.

Every day health and social professionals across England, Wales

and Northern Ireland continue to pull out all the stops for families with MND.

Thanks to the Association’s Extra Mile Awards (EMAs) we are able to recognise the exceptional support provided by these unsung heroes working in the NHS and social services.

Anyone living with MND, including carers and family members, are encouraged to nominate a professional, or team, they feel has gone that extra mile by providing outstanding support. In 2010 we awarded 32 EMAs making a total of 178 awards since we launched the scheme in September 2007.

Kate Gooding, the Association’s Acting Head of Care Services, said: “We know what a difference really high quality care can make. We created an award as a way to say a special thank you to health and social care professionals who have gone that extra mile by doing everything they can - and more - for people affected by MND.

“I’m delighted that we have presented so many EMAs. It really goes to show what exceptional care is being provided by so many professionals.”

Nominees receive an EMA brooch

and certificate and we also write to their immediate manager and the Chief Executive of their organisation explaining why we are recognising their exceptional work.

Lorraine’s storyLorraine Chard of St Austell in Cornwall, has MND causing her difficulties with mobility and she has lost the power of speech.

Lorraine nominated Angela White, housing team lead occupational therapist and John, her technician, who installed numerous aids to provide assistance. Lorraine’s nomination for Angela read: “Absolutely nothing is too much trouble for her. She has made me feel special, not just yet another person needing assistance. I know if there is anything needed to improve my life at home, she will do everything in her power to help.”

Her nomination for John read: “John is a very pleasant man, polite and caring. He shows great patience when I use my Lightwriter to communicate. He feels a job is always worth doing if it makes life easier for the person concerned.”

“We know what a difference really high quality care can make.”

Lorraine, right in picture, with EMA winners John Dowling and Angela White and RCDA Bill Nevin.

Nomination form

Name:

Address:

Postcode:

Telephone:

Email:

Date:

I would like to nominate:

because: (Tell us about how the person you are nominating has gone the extra mile for you)

Job title:

The name of their Hospital/Primary Care Trust or Social Services.

✂

Motor Neurone Disease Association PO Box 246, Northampton NN1 2PR Tel: 01604 250505 Fax: 01604 624726Email: [email protected]: www.mndassociation.orgRegistered Charity No. 294354

© MND Association 2011 EMANom11

Like Luise and Roger, is there an extra special professional involved in your care? If so, why not nominate them for an Extra Mile Award. The Extra Mile Awards are run by the MND Association to celebrate health

and social care professionals who have provided care

‘beyond the call of duty’.

“Our Occupational Therapist was always one step ahead, thinking about what Luise needed before we realised it ourselves. A good Occupational Therapist can make your life so much easier and thankfully we had a great one.”Roger Curry, husband and carer to Luise Curry

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Your nominations

“ She has a practical, thoughtful, and a very kind nature – giving patients a one-to-one approach – nothing is too much trouble for her. She really goes that extra mile.”

“ She is continuously developing services and is a great support to the community nurses as well as families of those with MND.”

“ She acts promptly to any requests for equipment or help. Seems to genuinely care about her work and is a good team member.”

“ She is such a kind, thoughtful person. She has helped my husband a great deal, over and beyond her job. I feel that people like her make the world a better place.”

Nominations pleaseDo you know someone who deserves an EMA? If so we’d love to hear from you. For an EMA nomination form please contact our care team, on 01604 250505, email [email protected], or visit www.mndassociation.org/emas


Throughout 2011 we continue our series profiling exceptionally talented scientists and clinicians, funded by the Association, who are working at the forefront of MND research. In this issue we talk to Prof Siddharthan Chandran, consultant neurologist and stem cell researcher.

profile

Focus on:Prof Siddharthan Chandran

Based at the University of Edinburgh where he is director

of the Euan MacDonald Centre for MND Research as well as Professor of Neurology at the university, Prof Siddharthan Chandran is leading the Association’s first and largest stem cell research programme.

He has been based in Edinburgh since July 2009, but previously worked in Cambridge for four years where he was part of the team at the Association’s Cambridge MND Care Centre.

So how did Prof Chandran get into MND care and research? “It’s a long story,” he explains. “My research background is in multiple sclerosis (MS) but the importance of chance, luck and the influence of key individuals in determining my career direction combined with the emergence of stem cells as a tool to study and potentially treat human disease led me to MND.”

Prof Chandran trained in medicine at Southampton University and then undertook neurology training at hospitals in London and Cambridge. In 2000 he completed his PhD at the University of Cambridge which investigated the processes that are responsible for brain development.

Since he began his research career in neurology in the 1990s, Prof Chandran has always been interested in why nerve cells die and more importantly how we might slow down this process through new treatments to protect dying cells. How this might be achieved wasn’t clear until the development of stem cell research in the late 1990s, combined with the results from Prof Chandran’s own studies.

He picks up the story: “From my MS research in Prof Alistair Compston’s lab it was becoming increasingly clear that the environment surrounding nerves, including motor neurones, is key to their health, injury and even repair. At the time of this piece of research, Clive Svendsen, who is now

an international MND stem cell expert and also a good friend, was in a neighbouring lab.

“In 1997 Clive introduced me to the stem cell field when it was still in its infancy. This was the key point in my career. My own research project at that time was rapidly going pear-shaped. As my interest in stem cell research developed I realised that MND was an obvious disease to test the experimental and hopefully therapeutic opportunities of stem cell research.”

The Association’s stem cell research programme, led by Prof Chandran, pulls together world-class researchers from four leading institutes covering three countries – England, Scotland and the USA.

This research is using skin cells from people with a rare, inherited form of MND through collaboration with Prof Chris Shaw’s lab, which are then reprogrammed to behave like embryonic stem cells (see page 16 for more information). These stem cells can be coaxed to develop into motor neurones and other cells believed to play an important role in the disease. The researchers aim to use these cells to create a reliable human model of MND which can be used in the lab to investigate what actually causes motor neurones to die as well as to rapidly test potential new drugs.

“This is a new resource for researchers which has game-changing potential,” Prof Chandran explains. “It is potentially a major drug-discovery tool and one that I think could make a huge difference to our understanding of MND and in turn discovery of treatments in the next decade.”

Dr Brian Dickie, our Director of

Research Development, says: “We have started to make real progress in understanding the genetic basis of MND. Scientists such as Prof Chandran are combining these discoveries with the latest advances in stem cell technology to develop groundbreaking ways of studying MND. This would have been considered science fiction just a few years ago.”

Prof Chandran is optimistic for the future for he believes the emergence of major new technologies in the field of genetics and stem cell research are grounds for very real hope. “It is inevitably a long journey but I think the next decade will see great advances in MND research.

“Being involved with patients and carers and knowing how they cope with MND remains both humbling and the driving force for our research – our ambition is to make a difference for people affected by MND.”

“As my interest in stem cell research developed I realised that MND was an obvious disease to test the ...opportunities of stem cell research.”

Prof Siddharthan Chandran

Nomination form

Name:

Address:

Postcode:

Telephone:

Email:

Date:

I would like to nominate:

because: (Tell us about how the person you are nominating has gone the extra mile for you)

Job title:

The name of their Hospital/Primary Care Trust or Social Services.

✂

Motor Neurone Disease Association PO Box 246, Northampton NN1 2PR Tel: 01604 250505 Fax: 01604 624726Email: [email protected]: www.mndassociation.orgRegistered Charity No. 294354

© MND Association 2011 EMANom11

Like Luise and Roger, is there an extra special professional involved in your care? If so, why not nominate them for an Extra Mile Award. The Extra Mile Awards are run by the MND Association to celebrate health

and social care professionals who have provided care

‘beyond the call of duty’.

“Our Occupational Therapist was always one step ahead, thinking about what Luise needed before we realised it ourselves. A good Occupational Therapist can make your life so much easier and thankfully we had a great one.”Roger Curry, husband and carer to Luise Curry

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15/3/11 09:50:22


Communication mattersProblems with communication can occur as a result of MND and the choice of aids can be bewildering - from low-tech items such as alphabet boards and speech cards, to high-tech aids such as computer software.

Not all communication aids are suitable for every individual

and an independent assessment is essential. The first contact for assessment should always be a speech and language therapist.

We are revising our care information on speech and communication later this year and would love to hear which aids you have used, both simple and complex, and about any problems, hints or tips.

Gordon Cashmore wrote to us to explain how eye tracker software has enabled his wife to communicate again.

He explains: “Initially, Maureen was able to use a Lightwriter, but as movement in her arms and hands became less, it became increasingly difficult to type, and then to use a switch on to which she had progressed.

“Four years ago she fell silent when her hands stopped moving altogether and unfortunately nobody could come up with a practical alternative.

“It is not until we lose the ability to talk, that we find out just how important communication really is, and this eye tracker has greatly

improved our quality of life.”However, some people have found

these types of systems difficult to use and they are not suitable for everyone with MND. Independent assessment with a speech and language therapist, and sometimes an occupational therapist, is particularly important – complex computer systems can be expensive and need to be carefully considered.

Many people with MND are currently looking at iPhone solutions and other high-tech options. If you have used any form of computer software, to assist either verbal or written communication, we’d like to hear from you.

You may also be able to share experiences of a specific speech therapy that has helped you to extend your vocal ability.

Tina Fay, who is living with MND, worked with a speech and language therapist trained in the Voicecraft technique. The therapy helped enable Tina to use her tongue and palate

more effectively. Tina had nearly given up speaking

before practising the technique, but told us in January this year that she was still talking: “It’s fair to say that my speech is not how I sounded before MND but it is so much better than it was. In fact just one session of therapy produced massive improvements.”

It is important to emphasise that evidence to support the benefits of Voicecraft is anecdotal at this point and this particular therapy may not be available in your area.

However, we would be interested to hear if anyone else has had experience of Voicecraft or any other specific programme related to speech and communication therapy.

Find out moreIf you are currently considering the use of speech and communication aids, your GP will be able to refer you to a suitable specialist.

If you have found it difficult to locate a speech and language therapist in your area contact MND Connect on 08457 626262 or email [email protected]

Share your experiencesIf you can offer any information on aids or therapies, please contact us at [email protected] or write to Infofeedback, MND Association, PO Box 246, Northampton, NN1 2BR.

Your input is very important to us, to ensure the information we provide accurately reflects your requirements and helps other people with MND to get the assistance they need. We will not be able to respond in detail to every email or letter received, but we will acknowledge receipt and would like to extend our gratitude.

care information

“It is not until we lose the ability to talk, that we find out just how important communication really is...”

Using a Lightwriter

Maureen Cashmore and eye tracker software


Join our election campaign

Campaigning in WalesThe Wales MND Association Manifesto provides a guide for meeting the challenges of MND after the election and has been produced in a full and summary version.

We will be sending a full copy to all candidates and Assembly Members (AMs) as well as to key health and social care decision makers across Wales.

In the run up to the election we will also be sending a campaigning pack, with resources to support lobbying,

to all MND Association branches and groups and all Association members in Wales. We also held a campaigning workshop in Cardiff in March.

Campaigning in EnglandAlmost one year on we are now experiencing the consequences of the general election in England and a Government that has announced huge public spending cuts and proposed changes to the NHS.

We are very keen to monitor the impact of changes, cuts and reductions to health and social care services for people with MND and their carers in England (and in Wales and Northern Ireland too). We need your support to do this.

In order to campaign effectively we must have evidence of the impact on the services you receive. This evidence will help us to build up a picture across England and to campaign at a local and national level. We will be able to give politicians and policy makers real examples and personal experiences of the impact of the cuts to services.

Please share your story by completing the cuts watch form at www.mndcampaigns.org

Wales Manifesto 2011

��

Make MND a priority in Wales

Wales Manifesto 2011

In May 2011, elections will be held in both Wales and Northern Ireland and we have been working hard to produce manifestos and a range of lobbying resources to maximise opportunities to lobby politicians and raise the profile of MND.

We have a new campaigns website explaining the many ways you can support our current campaigns in England, Wales and Northern Ireland. Visit www.mndcampaigns.org

Please show your support and take action now.

Campaigning in Northern IrelandWe have also produced the Northern Ireland MND Association Manifesto in a full and summary version.

We will be sending a full copy to Members of the Northern Ireland Assembly (MLAs) as well as to all candidates and to key health and social care decision makers.

We will also be sending a campaigning pack, with resources to support lobbying, to the Northern

Ireland branch and all Association members in Northern Ireland in the run up to the election. We also held a campaigning workshop in Lisburn.

Making MND a priority – take action

campaigns

Find out moreFor the latest on our campaigning activities please contact Raj Johal on 020 8551 2152 or email [email protected]

research


Stem cells: Investing in the future

Our vision is a world free of MND, and stem cells could prove to

be important players in making that vision a reality. However, they are no ‘magic bullet’. The use of stem cells to directly treat MND is fraught with difficulty and there are enormous hurdles to overcome. The greatest potential of stem cells may currently lie in their ability to provide scientists with a living, human model of MND in the lab but even that involves some serious technical challenges.

The Association recently played a key role in bringing together some of the world’s leading stem cell experts at a conference aiming to clarify the future development of MND stem cell research (see News, page 5) and our ever growing portfolio of research projects now includes two cutting-edge studies that will see researchers manipulating stem cells to provide

a unique tool for studying the disease and developing new drugs. Our Director of Research Development Dr Brian Dickie says: “As a major funder of MND research, the Association is in a unique position to help the scientific community forge a clear way ahead, building on what has already been learned and using stem cells to their maximum potential.”

Funding groundbreaking stem cell researchBoth of our stem cell projects involve ‘induced pluripotent stem cells’, or iPS cells. These cells start out as human adult skin cells but with a bit of

ingenious scientific ‘persuasion’, they can be reprogrammed into behaving like embryonic stem cells. Embryonic stem cells have the ability to go on to develop into any type of cell, including motor neurones, which is why they can be such a valuable tool to researchers.

Prof Siddharthan Chandran (see profile, page 13) and Prof Sir Ian Wilmut at the University of Edinburgh are collaborating with Prof Chris Shaw at King’s College London and Prof Tom Maniatis at Columbia University in New York on our groundbreaking programme to develop a reliable lab model of MND based on living human cells. It’s a goal that’s been something of a ‘holy grail’ to researchers for a number of years.

Their central aim will be to refine and optimise the process of generating motor neurones and other

Stem cells – so much hype, so much hope, but how far has the science actually come and where do we go from here? Kate Arkell from our research development team explains.

Human iPS cells developing into neuronal cells. Image courtesy of Prof Siddharthan Chandran and Andrea Serio, University of Edinburgh.

“As a major funder of MND research, the Association is in a unique position to help the scientific community forge a clear way ahead...”


Information on stem cells: General:www.mndassociation.org/stemcells Research information sheet Q: Stem cells and MND

Stem cell projects we fund: www.mndassociation.org/chandranwww.mndassociation.org/wade-martins Research information sheet E: Funding MND research

Unregulated treatments:www.mndassociation.org/research/unproven_treatments Research information sheet U: Unproven treatmentsALS Untangled (a consortium of expert MND clinicians who investigate alternative treatments): www.alsuntangled.com

Latest news:www.mndassociation.org/research/news_in_research Research blog: http://mndresearch.wordpress.comTwitter: @mndresearch

key cells from iPS cells, ultimately providing the research community with a disease model that can be used in the years to come for efficient testing of potential new drugs as well as to better understand the development and spread of MND.

While Prof Chandran and colleagues are using stem cells derived from the skin of people with a rare, inherited form of MND, our other innovative project based at the University of Oxford is using a model of MND based on iPS cells from people with sporadic (non-inherited) MND. Dr Richard Wade-Martins and colleagues will be able to investigate how iPS-derived neurones that already have a subtle predisposition to degenerating respond when placed under various types of disease-related stress. This will allow the researchers to home in on the key processes that cause motor neurones to die.

Research vs treatment Both of these projects have the potential to make a powerful impact on the development of future treatments for MND but it’s important not to confuse this type of work with research into the use of stem cells to directly treat the disease:

• Stem cell research involves using stem cells to generate living human neurones for scientists to study in the lab. These neurones could then be used to test potential new drugs quickly and relatively cheaply.

• Stem cell treatments involve the transplantation of stem cells directly into a person with MND in the hope that they will slow the progression of the disease. Stem cell therapies can involve different types of stem cells, such as those derived from foetal cells or adult bone marrow.

The road to stem cell treatments for MND will be a long one. Scientists need a really good understanding of the various stem cell types, how they behave and how they can misbehave, before they can even begin to think about transplanting them into someone with MND. This groundwork is essential. As Prof Clive Svendsen explained to delegates at our recent stem cell conference, some stem cell lines have even shown a tendency to undergo changes similar to those seen in tumour cells, so it really is a case of proceeding with caution.

First treatment trials underwayProf Svendsen and colleagues performed much of the groundwork for the first clinical trial of a stem cell treatment for MND to be approved by regulatory authorities in the USA. The trial is using cells developed by a biotechnology company called Neuralstem. It started at the beginning of 2010 and is concentrating solely on establishing the safety of the stem cells and the surgical transplant procedure patients undergo.

To date, just nine people with MND have received the treatment, with each being very closely monitored both during the surgery to implant the cells into the spinal cord, and for months afterwards. As the clinicians leading the study, Jonathan Glass and Nick Boulis, explained at our conference, patient safety is always absolutely uppermost in their minds.

Another safety trial, or ‘phase 1’ trial as they are known, has since got underway in the USA and another will be starting shortly in Israel. Both involve stem cells derived from adult bone marrow. Should the treatments prove to be safe, the organisers can then proceed through further phases of trials involving large numbers of people to establish whether or not they are actually of any benefit.

Stem cell clinics around the worldGiven the number of stem cell treatments that can be found on the internet, accompanied by high price tags and claims of remarkable benefits, it might be hard to believe that proper testing of such treatments is at such an early stage. Our information sheets and web pages on stem cells and unproven treatments provide clear explanations about the lack of reliable evidence associated with the expensive stem cell therapies being offered around the world, providing balanced information that aims to help people make an informed choice.

A session at our stem cell conference was also devoted to the issue of unregulated treatments,

with delegates highlighting the importance of clear communication from charities and the research community to people who are affected by MND.

Sarah Ezekiel was diagnosed with MND 11 years ago. In 2003 she underwent stem cell treatment at a clinic in the USA that was closed down by American regulatory authorities not long after her visit. Sarah never experienced any improvement as a result of this treatment and is concerned that other people with MND might still be tempted to spend large sums of money on undertaking similar unproven therapies.

However, she is optimistic for the future: “I’m really encouraged by the recent MND Association conference. I feel that stem cells offer us real hope and the fact that they are now being looked at specifically for us is great news!”

Dr Dickie explains: “As stem cells become an ever more established feature of the MND research landscape in the years to come, the Association will remain poised to support promising stem cell science and to ensure that researchers work together as productively as possible. From this vantage point we will also be able to keep people affected by MND updated with the latest developments and help to separate the hype from the genuine potential of these remarkable cells.”

Sarah Ezekiel

0845 604 4295 www.mndassociation.org/challenge www.mndassociation.org/donate pass on

1

passiton

Weyourneedsupport

now

“

”Motor Neurone Disease Association, PO Box 246, Northampton NN1 2PR. Registered Charity No. 294354. Company Limited by Guaranteed No. 2007023

“Life changes beyond all imagination when you’ve been diagnosed with MND. I can’t talk or move any part of my body and I rely on a ventilator to help me breathe, but I’m not giving up. I love life, my family and want to watch my son grow

up. I value greatly the support I receive from family, friends and carers and I know that the MND Association is always there forme if I need them.”

Ned Cullen, livingwith MND, and hisson Rory, aged 3.

Please help us today. Thank you.

“The MND Association is always there for me...”


fundraising

Like many Thumb Print readers, I know how challenging life with

MND is. I was diagnosed with a slower-progressing form of the disease in 2004.

Thankfully, I’ve also experienced first-hand the difference the MND Association makes to those who are affected by this devastating disease.It’s been a real life-line knowing that support, information and advice is always at hand. And the global ground-breaking research the Association funds and promotes gives all those affected by the disease hope for the future.

As someone who is living with MND, and a trustee of the charity, I feel passionately that we must be able to continue our amazing work, but times are hard. With health and social services about to undergo a major restructure, and the already increasing demand on the support we provide to people living with MND, it’s going to be a real challenge.

We rely on voluntary donations and, while we never cease to be amazed by the generosity of our supporters, if we are going to continue to fund care and research we must to reach out to more people. But recruiting new supporters for a specialist charity like ours is really tough.

That’s why I’ve agreed to front the new Pass it on campaign.

The idea behind the campaign is a simple one. It is a word-of-mouth approach to getting others involved with fundraising to support our work. Just talking to people you know about what life is like when you are affected by MND, makes a massive difference and we know many of you have already inspired others to support us in this way.

Now we’ve created a handy booklet explaining the many ways people can become involved with the Association and help make a difference to the lives of those affected by MND.

And that’s where you come in.You’ll find a special envelope

enclosed with this edition of Thumb Print, containing three Pass it on booklets. Please help us spread the word by passing these booklets on to people you know – friends, relatives

or colleagues – to encourage them to support us and help turn our vision of a world free of MND into a reality.

Thank you so much for your support, every booklet you pass on really will make a difference.

We need your support now

passiton

passitonSpending money wisely

Our exciting new campaign makes it easy for you to help us reach out to new supporters

Rest assured, every pound we receive is spent wisely so that people affected by MND get the help they need, both now and in the future.

For every £1 received in 2009/10

56p was spent on care and support services

22p on research

1p on governance

21p on fundraising and merchandisingFor every £1 we spent on fundraising

£3.10 was raised for the Association.

Jean Waters


passiton

passiton

Ways to support us

Making a difference

Making a differenceThank you so much for your support. Every booklet you pass on will make a difference.To find out more visit www.mndassociation.org/passiton. For more booklets please visit our webpage www.mndassociation/passiton-booklet or call us on 0845 604 4295.

There are many ways you can encourage people you know to support our work.

Do your own thingFrom the smallest cake sale to a large fundraising ball, there are so many ways to raise funds.

Take on a challengeOur challenge events are a memorable way to get fit, have fun and make new friends – all while raising crucial funds.

Become a member Every member adds to our collective voice which increase our influence on central Government and local authorities.

Workplace charityOrganisations, big and small, often ‘adopt’ a charity to raise funds for.

Give in celebrationInstead of receiving gifts, ask friends and family to make a donation to the Association instead and make the day even more memorable.

Make a donationIt’s quick and easy to make a donation over the phone, online or by post.

£15 buys an adapted cutlery set and, for someone with MND, the dignity of being able to feed themselves.£50 funds laboratory equipment for a day’s vital research into finding the causes of MND.£150 operates our MND Connect support and information line for half a day.£500 funds the installation of a stair lift.£1,000 buys a riser-recliner armchair to help maintain mobility.£3,000 funds an MND expert researcher for one month and keeps the hope of a cure alive.

“I have never been so inspired by a charity. Knowing that all funds raised are providing

beneficial and life-enhancing equipment

and support to those with MND is wonderful and refreshing.”Louise Pell, Midlands Co-operative Society

“I love life, my family and want to watch my son grow up. I value greatly the

support I receive from my family, friends and

carers and I know that the MND Association is always there for me if I need them.” Ned Cullen, who is living with MND

“We rely almost entirely on voluntary donations and the generosity of the public to do our job

– supporting all those affected by MND. That’s

why we desperately need your support today.”Dr Kirstine Knox, MND Association Chief Executive.

Louise Pell

Ned Cullen and his son Rory

Kirstine Knox


personal experiences

Telling it as it isThe reality of living with MND

In our regular series, readers share their personal stories of living with MND.

Our pride for talented Spencer

Builder Spencer Bates was diagnosed with MND in September

2009 at the age of 47. Married to Nicky, with two young sons Samuel, and Isaac, he has used his musical talent to raise awareness and funds. His mother Mary tells his story:

Spencer was a builder and had always been strong and healthy, but had been having problems with his speech for nearly a year. He noticed he was slurring his words and having difficulty swallowing.

The MND Association put us in touch with Association visitor Liz Nelson at the West Dorset Branch. We met her and she has been our port in a storm.

Within a couple of months, his breathing and muscle tone had made it impossible for him to continue working. Then he met the next big obstacle – trying to sort out benefits. He had never had a claim benefits before. They were eventually sorted out but not before a lot of stress and heartache.

Spencer had played drums with a

local band over the last 30 years and when he was diagnosed he told me he would like to arrange a concert with a band he had played with in the past. He wanted to raise money and awareness of MND so that maybe one day soon there would be a cure.

We arranged a concert with six bands, called Spenstock 1. His wife, Nicky, did an interview with Wessex FM and within a week all 500 tickets had sold out. It was a great success raising £11,308.

We soon arranged Spenstock 2. Again all tickets sold out very quickly and once again the bands gave their time and talent free. He raised over £10,000.

Spencer’s condition had been getting worse. He could no longer speak and was finding drumming very difficult as he could not hold the sticks. He had to tape the sticks to his gloves, and decided he

had to give up.The weekend before his final gig we

had booked a local recording studio and bands he had been involved with recorded a CD.

At the end of the CD there is Spencer on the drums. This was the last but one time he ever played. The CD is a great tribute to a special young man’s courage. The following week at a Weymouth pub he played his beloved drums for the last time. The place was packed and Spencer also had his hair shaved off to raise money for MND. During the evening his son Samuel sang and there was hardly a dry eye in the house.

By now Spencer was using a machine to talk and a breathing machine at night. He is now using a feeding tube for nutrition, although he can still eat some foods. Throughout all this he has tried to stay positive and never once has he said ‘why me’?

We arranged Spenstock 3 in October and raised about £3,000. This brings the total Spencer raised in 2010 for the MND Association to just over £25,000.

Spencer has brought so much pleasure to hundreds of people and certainly got more people aware of this awful disease. We can only hope and pray that there will soon be a breakthrough, so other families will not have to go through this trauma.Needless to say we are very proud of our son.

The CD, Spenstock - Together we’ll ‘beat’ MND is on sale for £10 and proceeds will be divided between the Association and trust funds for Samuel and Isaac. Email [email protected] or [email protected]

“Spencer has brought so much pleasure to hundreds of people...”

Spencer with his son Samuel and wife Nicky

Spencer plays his beloved drums


Brian scoops sports awardAvid cyclist Brian Haines won the Reading Disabled Sports Personality of the Year award just 11 days before he died of MND.

Brian, 65, had been determined to attend the prestigious awards ceremony alongside the cream of Reading sport, despite being very weak.

Brian’s wife Margaret said: “It meant a huge amount to him. Brian received a standing ovation. He was very proud.

“The next day he sent an email to lots of his friends - the last he was able to write - with the words ‘I WON’.”

Keen cyclist Brian was diagnosed with MND in March 2009 and by October he no longer had the strength in his legs to continue to use his collection of bikes. Unable to speak at all, or swallow, his only means of communication was through typing on his Lightwriter or emailing. He received all his food and drink from a feeding tube through his stomach.

Then last summer Brian discovered the twice weekly outdoor cycling sessions run for disabled people at

Reading’s Palmer Park and he was soon speeding around the track on a special quad bike giving his usual ‘thumbs up’ sign with a beaming smile. He once remarked that the sessions were the centre of his world.

Cycling coach Binders Roszczyk was so impressed with his determination and positive attitude despite his difficulties that she nominated Brian for the sports award. A host of sports personalities, including Reading FC Chairman Sir John Madejski and manager Brian McDermott, stood to applaud as Brian received the glass trophy from Cllr Tom Stanway, Reading Borough Council’s lead councillor for sport and culture.

Binders said : “Nobody had ever touched my heart in a way that he had. It was his tremendous positiveness. I had this huge admiration for him.

“Brian would be keen for us to grasp this opportunity to spread the word about MND and about our cycling.”

In memory of ErnieMoira Raines, of East Sussex, describes her family’s 14-month journey with MND following her husband Ernie’s diagnosis in 2008:

My husband, an active man who loved life, and with a wonderful sense of humour was about to begin the hardest fight of his life.

His reply to Prof Leigh who gave him his final diagnosis was ‘I fought and survived MRSA four years ago and I will fight and survive this’. The professor advised that the illness was terminal, there was no known cure and life expectancy was two to five years.

We left the hospital quietly, both trying to come to terms with the devastating news. Our world had just come crashing down round our ears. How were we going to cope? We hugged and cried as we realised what this meant to us and to the family. After a long and emotional discussion, we decided to live through each day, as though it were our last and really enjoy whatever time we had left together. This MND was not going to beat us.

The progress of the disease was relentless and as I watched the terrible devastating effects of it my heart was breaking. He was simply trapped in his useless body and yet he remained cheerful and positive, finding laughter in the most trying situations.

Our family was devastated and kept hoping for a miracle cure. Inspired by Ernie’s attitude and seeing the need for research, our daughter Diane decided to run the Barn Green half marathon in November 2009. She wore her MND T-shirt with pride and

completed the run in the driving rain and cold, raising over £700.

Unfortunately only weeks later Ernie lost the fight . He died on 13 December 2009 only 14 months after diagnosis.

We have decided to do a fundraising project every year in his memory. In 2010 Sophie, our granddaughter, successfully completed the Three Peaks Challenge raising just over £600. Christmas should have seen another challenge when her brother and sister were due to do the Santa Run . Unfortunately this was cancelled due to the inclement weather.

We are now in discussion as to what the next project will be. There will be one in 2011, we are very determined about that.

I am now serving on the committee of my local branch of the MND Association. I hope I can be of some use in assisting those people and their families who are still living with this terrible disease.

The family hope that the funds raised for research into the cause of MND will increase the possibility of finding a cure sometime in the not too distant future.

Brian gives a ‘thumbs up’ with his wife Margaret

Brian on the cycle track

Ernie Raines with his loving family


personal experiences

My wife Ann loved walking. Our favourite walk was around

Carlingford in County Louth with the Mourne Mountains on one side and the Cooley Mountains on the other.

Ann developed a limp in May 2008. After months of tests she was finally diagnosed with MND in February 2009.

As a family we didn’t know what it was or what it entailed. The consultant told us there was no cure and that Ann would get progressively worse.

Ann wrote in her diary: “So, my whole has life changed completely.”

I contacted the MND Association and they sent their information pack and put me in touch with Helen McClean, the regional care development adviser here in Northern Ireland. From then on we knew we weren’t on our own.

Our daughter, also called Ann, and I became her main carers. It was a steep learning curve. We sometimes muddled through, getting things wrong, but through time and with the help of the rest of the family I think we got it almost right.

When Ann’s voice began to fail she began to text using her mobile. When her hands began to fail we

got a Lightwriter from MND Association. It was a godsend. She was able to send and receive texts and used it every day.

Ann was a member of the local Book Club and loved the meetings every month. I got whatever book we were reading on audio discs and she always finished it before me. She would be chuffed with that! She would then use the Lightwriter to make notes about the book for the next meeting. When her hands began to fail she lost that ability. On top of that she had lost the power in her legs so she spent all her day in a wheelchair.

In January 2010 she passed her test for the use of her electrically propelled wheelchair. She was over the moon! It meant she had a bit more freedom but it only lasted for about a month as she lost the use of her arms. But she still loved to get out and if the sun shone and even when it didn’t we were in the car and out and about. Our son Danny and her sister Theresa were great help as I couldn’t drive.

She went to the day centre in the local hospice every Monday. She loved

Making the most of lifeTony Carroll pays tribute to his wonderful wife Ann, who was determined to make what she could of her life with MND.

going there and some of her paintings she did there hang in our house. She met and had her picture taken with the President of Ireland on one of her visits to the hospice. Whenever new visitors came to the house we had to point out the photograph. She was very proud of it.

It was her 68th birthday in April and we had a special celebration for her. The family had a DVD made and had all her friends make a short video. They were from America, England and Ireland. Ann said it was the best birthday party she ever had.

She always had a lot of visitors and she gave them a great big smile when they came in. But the biggest smile was always reserved for her grandchildren. She adored them and they in turn adored her. They never made any comment about her being in a wheelchair. She was their granny and if she wanted to be in a wheelchair well so be it.

In May her sister got her a small whiteboard with an alphabet on top which was a great help. I would go along the alphabet and when I got to the letter Ann would nod her head. Ann could now tell us what she wanted by nodding or shaking her head. When she could no longer use her head she used her eyes to communicate and up to her death that white board was never out of use.

We had great help from MND Association and the Southern Health Trust. They provided the wheelchairs, the special bed and the carers who became great friends of Ann. They told her all the news and the gossip and kept her up to date in what was happening around Newry. They did things above and beyond what was expected of them.

In the end Ann’s body could no longer cope with the ravages of MND. One day in September as we all sat round her bed she signalled for our son Danny she wanted something written on the whiteboard. The words were: “I love you all.”

Ann died the next morning, eighteen months to the day she had been

diagnosed. She died peacefully at home with her family by her bedside.

On the day she died I went outside to our garden. I noticed something on her favourite rose bush. Overnight, a single red rose had bloomed.

“On the day she died I went outside to our garden. I noticed something on her favourite rose bush. Overnight, a single red rose had bloomed.”

Ann and Tony at a wedding celebration

The red rose that bloomed the night Ann passed away.


After a number of tests, I was finally told that unfortunately

I had MND. The consultant stated that he was very sorry and wished he could tell me different. ‘No, I never saw that coming’, maybe a hip replacement like my parents for me when I was in my seventies, but certainly not a neurological illness.

During my life, I had always felt gifted with the ability to immediately evaluate most difficult situations whether at work or home and instantly decide on the best course of action to overcome the problem, but this time I was unable to provide any answers.

I had no alternative, but to accept that this was the beginning of a new journey for me and my family, where I was certainly not in control and it would be a rocky road.

The advice suggested by most people was that you should make the best of your life while you are still mobile and therefore I took early retirement on the grounds of ill health in May 2003.

My father had always stressed the importance of keeping fit and I heeded that advice over the years maintaining a fairly good level of fitness by swimming, cycling and walking.

However, being fit does not prevent you from getting MND, in fact strangely it would seem you are more likely to get the illness if you are a fitness fanatic. How do you deal with such a blow? Why have I got the disease? What about my poor wife, daughters, my elderly parents and siblings. How will they deal with it? Yes, these are the type of questions you ask yourself and it’s a nightmare, but life goes on and of course we all have to eventually find a way of dealing with the tragic situation.

It is not easy, because you are shell shocked knowing the life changes ahead. The illness is as much a mental challenge as physical.

I’ve shed lots of tears, had some very lonely dark moments, but I decided from the beginning

Dealing with MND - my philosophyGrandfather Dave Jones shares his simple philosophy of how to deal with MND.

to accept my fate, be open with everybody and make the best of my life and remain in control. Treat it as a challenge and in my case ‘take everything to the line’.

When I was initially diagnosed I had an overwhelming desire to de-clutter. I also wanted all our household paperwork in better order, so that Gill would know exactly where everything was kept.

We purchased coloured folders and together we sorted our papers, labeled and filed everything. Yes, I suppose I was putting my house in order, but I felt better. It was now time to prepare for a life living with MND. We finally decided after much deliberation to adapt our home and we engaged the services of a local builder to convert our garage to a downstairs bedroom and build a new wet room.

At this stage of the journey with MND, I have experienced many of the symptoms attributed to the illness, but with the support of my wife, family, friends and the good

old NHS I still manage to enjoy a happy life.

The disease is progressive and it becomes a strain for the patient and the carer to continually adapt and find practical solutions for new disabilities. It is known as a complicated and unpredictable disease and therefore it is advisable to try and make changes early rather than wait for it to become an emergency.

Anyway, that’s a brief overview of how I found out about my illness and my simple philosophy of how to deal with it.

Read more at www.jonseemnd.co.uk/jonseemystory/index.html

“I had no alternative, but to accept that this was the beginning of a new journey for me and my family...”

If you would like to share your experiences on any aspect of living with MND, we would welcome your contributions for possible future publication in Thumb Print. Please note these articles are personal opinions and not necessarily those of the MND Association.

These can be sent to the Editor at PO Box 246, Northampton NN1 2PR or emailed to [email protected]

Dave Jones is making the best of life


Salah El Massouri has always enjoyed socialising and good conversation,

it stems from a successful career in the hospitality management industry.

And while a diagnosis of MND means Salah has now given up his much-loved job, his hunger for good company and educated conversation is still being met, partly thanks the contact he has with MND Association volunteers.

Tunisian-born Salah was aged just 47 when he was diagnosed with MND in 2007.

He says: “I first experienced symptoms in 2001, when I started

limping, but I soon deteriorated and eventually needed a wheelchair. I was finally diagnosed with MND in 2007.”

Desperate to know more about the disease, Salah started searching for information online.

“So many people just don’t know what MND is – and that included me. When I was diagnosed I went on the internet and found the MND Association’s website. Now I don’t know what I would have done without the Association’s support.

“The Association initially helped by providing me with a riser-recliner chair, financial advice and information

Volunteers provide a ‘five star’ service

“Now I don’t know what I would have done without the Association’s support.”

volunteering

about an occupational therapist.“Everything I have asked for has

been done and, in fact, much more than I could have expected.”

A year ago Salah was put in contact with Association visitor (AV) Jasmin Tarique.

“Jasmin is a wonderful, articulate girl,” he says. “She phones, visits and emails me at least every couple of weeks. It really is worth having a

Andy Pape, left and Salah El Massouri

Salah El Massouri feels in control of his future, thanks to the support of Association volunteers. He talks to Paula McGrath...


conversation with her .“We talk about all types of things.

She asks how I feel and whether I need any help with anything, then we have a cup of tea. For me she is more of a trouble shooter.

“I find her very efficient and polite and very qualified and caring. These are qualities that are not easy to find in one person. She is a star – in fact I’d give her five stars!”

Salah says Association volunteers have provided wide-ranging support, from helping him find a more suitable studio home, to arranging for him to attend painting sessions at a local hospice.

Salah regularly attends South London Group meetings. He really appreciates the practical advice available, saying the meetings empower him to get involved in his own future and the future of others affected by MND.

“Some people consider the group meetings as a day out but for me it’s much more than that. The meetings are very interesting and we have good speakers.

“It’s interesting to listen to talks about decisions made by the Government and changes in the law, how I can make a difference by contacting my MP and how the Association is making a difference.

“I find it easy to talk to people, and easy to listen.”

However, Salah admits that life with MND does have its challenges.

“I stopped work about six years after my diagnosis. My colleagues said ‘don’t die a hero’ but I would go back to work tomorrow. I really miss the tasks and the people.

“I felt very, very low on diagnosis. I loved my job and I loved to travel and then I couldn’t even put my own shoes on. But Maria was there for me, and she’s still there for me, and my friends support me as much as they can.

“I still miss the daily things we take for granted – I used to jump in and out of the shower in 10 minutes without thinking and now it’s like trekking the Great Wall of China.

“Sometimes when I go to hospital I see children or older people suffering and people often say ‘why me?’ but I’m different, I say ‘why not?’ I was lucky to be healthy for 47 years.”

Salah says although MND has changed his life dramatically, thanks to the continued support of Maria, his friends and the Association’s staff and

Volunteers provide a ‘five star’ service

volunteers, his outlook remains positive.

“Before MND I was always a very active person, particularly enjoying work and travel, but I am still very optimistic, have a good social life and remain as active as I can.

“Life’s about sharing happiness

“I still miss the daily things we take for granted...”

and turbulence with other people. That was my philosophy before I was diagnosed with MND and it’s the same now.

“A life without dreams is not worth living – the MND has changed me physically but it hasn’t changed the person I am inside. The only difference is that I’m more humble now.”

Have you been inspired by this story? For more information on volunteering with the Association please call the volunteering team on 0845 6044150 or visit www.mndassociation.org/volunteering

Bringing people togetherAndy Pape, who runs his own financial advice business, is chair of the South London Group and an Association visitor. He was motivated to support the Association after his dad was diagnosed with MND in 2007.

Andy said the meetings help to remove the isolation sometimes felt by those affected by the disease.

He said: “I’ve heard people with MND say how isolated they can feel not knowing of anyone else in the same position. The open meetings can give them the chance to meet others and share experiences. The same is true for partners, family members and carers.“

Andy said meetings provide members with the opportunity to learn about the latest news, research and equipment, as well as being able to feed back thoughts and opinions on issues that matter to them.

He said: “I personally get a lot of satisfaction from the knowledge that I’ve done my bit to bring people affected by MND together. It’s a pleasure to see people chatting, supporting each other and cracking

A rewarding role Association visitor Jasmin started volunteering at a nursing home in Clapham in 2004, as a way of thanking the NHS for the care given to her father while being treated for bowel cancer.

In 2006 she decided she wanted to be more actively involved with a charity and was put in touch with the Association through her volunteer bureau.

She said: “After some initial research about MND, I realised how ignorant I was about the disease. I wanted to volunteer for the Association to find out more about the disease.”

Since completing the Association visitor training course in October 2006, Jasmin has been able to

the odd joke!”Andy is keen to encourage

more people affected by MND in south London to attend the group meetings – support can be given with transport.

“I think some people are, understandably, put off by the fear of seeing others who are further along the MND journey,” he said. “Feedback I’ve had so far is that once they have been to their first meeting they feel less isolated knowing there are others there who understand what it is like to live with MND.”

use her professional corporate communication skills to support Salah and others living with MND.

“As I am a communicator by profession I have worked with Salah to help draft correspondence to social services,” she said. “I have also been present when his social worker was visiting, to explain more about the role of the MND Association.”

Jasmin says she finds the role of Association visitor ‘very rewarding’.

“I think it has broadened me as a person,” she says. “It is very easy to be caught up in one’s inner circle of friends and family, but knowing you can make a difference to someone’s life even in the smallest way is worth it.”

Andy Pape

Jasmin Tarique

fundraising


The running bug

Sarah Fraser had never been particularly sporty, but when a

friend suggested a jog around the block she thought she’d give it a go.Little did she imagine that not only would she soon find herself bitten by the running bug, but she’d also be able to use her new hobby to raise funds for a cause so close to her heart.

By regularly setting herself new challenges, Sarah has completed the British 10K London Run, the Grim Challenge and most recently the Silverstone Half Marathon raising funds and awareness for the Association in memory of her mum, Sheila Richards.

The 47-year-old, of Market Harborough, said: “A few years go my friend Maxine sent a text around asking if anybody fancied meeting her for a jog around the block – I didn’t really have any excuses not to join her. I knew I could do with the exercise as at that time I was only walking the dog.

“I used to do sport at school and had played some netball when I was a bit older, but certainly nothing serious.

“We just started off jogging around the block and it really has grown from there. We gradually found we could add on extra roads and started going longer distances.”

Much to her surprise, school administrator Sarah soon found she was really enjoying her new hobby – in fact she had caught the running bug.

“It’s just great to have a bit of time and space to run and it’s good to get some fresh air,” she said.

“Running can also be very sociable! I often run with a friend and we have a natter on the way around. Having said that I’m also happy to put some music on and go off on my own.

“Either way, when I’ve been for a run I feel better both physically and mentally.”

Since being a busy working mum to Anna, now 10, Sarah says finding the time to exercise had become increasingly difficult, but running fits in perfectly.

“Like many people I have other commitments in the evenings, particularly taking my daughter to after-school activities, but running is great because I can just fit it in whenever I can, often when my husband gets home from work – his support makes it possible.

“I’m certainly not a sporty person but I’ve really embraced running. In fact it’s a bit addictive, if I haven’t run for two or three days I feel I’ve got to go – it really is compelling.”

Sarah’s first ‘organised’ races were the local Daffodil Run, twice, and The Race for Life, in Leicester, for cancer care. In 2009 she ran her first race to raise funds for the Association with the British 10K London Run, an annual event in the heart of the city and a prominent and permanent fixture in our fundraising calendar.

This time Sarah ran in memory of her mum who died in March 2003 aged 69, two-and-a-half years after she was diagnosed with MND.

She said: “I felt so proud to be able to run for the cause that means so much to me. I loved it. I had very, very good support from the Association and there were lots of people wearing the MND vests or T-shirts. My family,

my father and sister Emily together with her family, were there as well to support and cheer me along the way.

“I’m aware the money I raise is only a little in comparison with the huge needs of the charity, but they are pounds the Association wouldn’t have otherwise. I realise how much every penny counts.”

Sarah said the Association provided valuable support to her family during her mother’s illness.

“When mum was diagnosed with MND I had heard of the disease but didn’t know what it involved.

“The MND Association was fantastic. My father had just retired and looked after mum at home, which was an amazing thing for him to be able to do. He was a complete tower of strength.

“We had equipment, help and moral support from the Association. It was so reassuring just knowing if there was anything practical we needed, or advice, we could get in contact.

“It was when I read the Association’s newsletters I realised that by running

“I’m certainly not a sporty person but I’ve really embraced running. In fact it’s a bit addictive, if I haven’t run for two or three days feel I’ve got to go – it really is compelling.”

Sarah Fraser has discovered she is able to turn her hobby into a fundraiser for a cause close to her heart.

A jubilant Sarah completes the British 10K London Run

Sarah’s mum Sheila


The running bug

“It was a real test of endurance, not just about running. I was exhausted but felt so pleased to have done it.”

I could raise money for the cause that was closest to my heart.”

After completing the British 10K Sarah knew she wanted to set herself a new challenge and to further support the Association’s work. Our events diary soon provided the inspiration she’d been looking for.

“I thought if I was going to ask the same people to sponsor me again I’d have to think of a new challenge.

“When I was looking through the Association’s events diary I realised the Grim Challenge would be perfect because it was something completely different, not just another run.”

In January, Sarah was joined by her husband Ian and two friends as they battled against the cold and muddy conditions.

“It was a real test of endurance, not just about running. I was exhausted but felt so pleased to have done it.”

It’s been a difficult start to 2011

Get involved – there is something for everyone!5km – Fun runs10k – British 10K London Run10 miles – Great South RunHalf Marathon – Silverstone Half Marathon/ Great North Run/Royal ParksMarathons – London Marathon/Edinburgh Marathon

We would love to welcome you on to one of our teams - and support you all the way.For further details and dates visit www.mndassociation.org/fundraising or phone the fundraising team on 01604 611860.

for Sarah, sadly less than 48 hours after she completed the ‘Grim’ her wonderful father lost his battle with cancer, however, she was determined to continue to raise awareness of MND.

Last month she donned her MND running vest once again, this time closer to home for the Silverstone Half Marathon, covering miles she’d never dreamed of on the world famous track that’s the home of Formula One.

Sarah said she is delighted to be able to use her hobby to raise funds for the Association and hopes to inspire others to follow in her footsteps.

“Just give it a go,” she said. “You might surprise yourself – that’s what happened to me!”

News in brief

Sarah joins the other MND Association runners and supporters to celebrate their achievements. Her daughter Anna and nephew Thomas are pictured, centre.

London MarathonOur 2011 London Marathon team runners have collected their hard earned, well deserved prestigious medals. Congratulations and thanks to each and every one. Read more in the next edition of Thumb Print.

Inspired? Stand by your computer on 26 April 2011. Online entries must be made at www.virginlondonmarathon.com The application capacity is usually reached in just 24 hours. Good luck!

Reaching new heightsAn intrepid group of employees from Pearl & Dean conquered the three highest peaks in the UK – and raised almost £20,000.

Pearl & Dean employee Allison McBride, whose father died from MND, was joined on the challenge by 15 friends and colleagues.

Allison said: “When my father passed away in September 2009 I was amazed at the support I received from my colleagues at Pearl & Dean. They were eager to help raise money for the MND Association by taking on the 3 Peaks Challenge. It was the most amazing experience that will stay with us forever. “

Charity of the YearThank you to Warwickshire based specialist facade contractor Alumet. The company chose the Association as its Charity of the Year for 2010 and raised over £2,000 through a variety of fundraising events.

country diaries


“Colin’s lifelong love of cycling remained with him even after his diagnosis with MND.”

Country diaries of a Guardian columnist

Colin Luckhurst wrote his first Country Diary column for The

Guardian newspaper in October 1965, while living in the Shetland Islands where he was the County Development Officer.

After Shetland he followed a career in education but continued writing the diaries for on a once-a-month basis to begin with and then bi-monthly.

Colin met his wife Barbara while they were both working as temporary postmen in the run up to Christmas, 1958. After apple strudel and coffee

in a café near Blackheath he would take her home, seated somewhat precariously on the back of his bicycle.

The couple had three children, Tim, Heidi and Matthew and eight grandchildren.

Colin’s lifelong love of cycling remained with him even after his diagnosis with MND. Barbara remembers how, even when walking unaided had become increasingly difficult, he somehow

still managed to ride his bicycle along a quiet country lane near their home. She says: “I would help him to mount, cross my fingers and wait anxiously for him to return. The day when even this became impossible is etched forever on my mind.”

Colin and Barbara’s son Tim, Professor of Journalism at the University of Kent and a former Editor of The Scotsman, is an active ambassador for the MND Association, most recently chairing our Summit on End of Life Care with HRH The Princess Royal.

Colin Luckhurst penned a Country Diary column for The Guardian newspaper for an incredible 44 years, from 1965 until his death from MND in 2009.

Colin Luckhurst


“... despite rigorous foot and mouth precautions, some serious fell walks were possible by the adults.”

Shetland Isles: October 30, 1965The crofting year yields its return in the autumn. This is the time of the stock sales and through September and October sheep arrive in Lerwick for grading from all the country districts. The fields round the auction market echo at night before each market day with the plaintive bleatings of lambs taken from their mothers. Consignments of ewes and lambs arrive daily from the north isles and the sailing schedule of the inter-island steamer is changed to deliver the batches of animals on Lerwick quay in time for transhipment to the mail steamer for Aberdeen. The shipping service to the south is augmented by the annual visits of the ‘St Rognvald’, a vessel converted to carry sheep in every available part of her hold.

Peeblesshire: September 25, 1973McArthur, the domestic cat, a feline of repugnant and unpleasant ways, is in the habit of returning from his nocturnal wanderings with the products of his hunting skills. He has been prevailed upon not to bring the tortured corpses into the house but too frequently a small bloody carcass is to be found on the rear porch in the morning. His catches are interesting in the light they throw on the small wild animal population of a waterside area. Very rarely does McArthur (he would have been Arthur, but it seemed appropriate to pay some tribute to his local ancestry) bring home anything as simple as a mouse; his most frequent victims are a very small breed of shrew, which I identify hesitantly as a pygmy. He distinguished himself recently by capturing, against all the odds, a surprisingly large water vole.

Peeblesshire: January 5, 1980Living here, not fifty miles from the epicentre of the Great Scottish Earthquake of 1979, proved to be quite dramatic in the small hours early on Boxing Day. The social occasions of the season gave all of us survivors many an opportunity to compare notes on our respective experiences

at 3.57am when the quake struck. I was personally delighted when my instant suspicion on being awoken, that it was a tremor making the house above me rock, was confirmed on the radio four hours later. In an old house of three floors the variety of groans and creaks the tremor caused made quite a chorus but we suffered no immediately detectable damage, although I shall be very suspicious if the next gale brings down a chimney pot.

Gloucestershire: October 21, 1988It’s an all action scene here at Luckhurst Towers on the foothills of the Cotswold Edge. The fencing of the paddock was completed in extraordinarily expensive post-and-rail at the end of the week. ‘No farmer would afford it’ commented a knowledgeable weekend guest on her southern foray from Gretna Green. And on Monday the first tenants of the verdant sward were freighted in, squashed in the back of the car. I shall have to buy a trailer, for you can imagine the problems inherent in carrying sheep in the passenger compartment of a car. But the three Black Welsh Mountain ewes which will constitute the nucleus of the intended flock survived the experience in good shape, and not withstanding their aristocratic lineage as this year’s lambs of the Duchess of Westminster’s flock, seemed to have settled to graze our humbler paddock.

Tetbury: March 26, 1999When we moved here I was stimulated by this Gloucestershire town at the southern end of the Cotswolds to have a look at this parish records. In 1563 there were families named Norris, Tallboys, and Barnfield resident in Tetbury. Now, when I play golf on Stinchcombe Hill, ten miles west, I am often in partnership with, or against, golfers bearing these surnames. I mentioned this to Dodger Norris, famed Severn elver fisherman. He looked at me seriously. ‘Couldn’t have been one of ours’ he said. ‘We all come from the Forest of Dean’.My reply was ‘have you not heard of the bicycle, the introduction of which did more for the genetic health of the rural population than most 19th century public health benefits. He looked doubtful.

Borrowdale: August 10, 2001The annual visit to Lakeland, an opportunity for grandchildren to splash in the beck and renew their friendships, enjoyed a week of sunshine and, despite rigorous foot and mouth precautions, some serious fell walks were possible by the adults. On Sunday afternoon I got up the eastern side of the valley from Rosthwaite to Watendlath, and a morning bike ride to Seatoller, as well as a swim later in the day, made up the exercise quotient. On another day a gentle game of tennis against my daughter stretched muscles not meaningfully employed for some years.

The MND Association, with the co-operation of The Guardian, is looking into publishing the diaries to bring them to a wider readership.

Elaine Gallagher, our celebrity and VIP manager, would be interested to receive your feedback, email [email protected]

Colin Luckhurst and his family

Some brief extracts from the Country Diaries, beginning with the very first

down your way


Fundraising fun. East Surrey Branch held its annual charity quiz night and raised almost £1,000. Branch Chairman Simon Edmands stepped in as quizmaster for the evening of cerebral yet trivial fun.

“I was delighted with the way the event went and equally pleased to still have my voice left on Sunday morning. Shouting out questions to 120 people for over three hours was quite a challenge!” he says.

Some 40 East Surrey Branch members also went to the dogs at Wimbledon Greyhound Stadium. Over £350 was raised.

Braving blisters. Having MND didn’t deter Jill Greenslade from taking part in a 22-mile walk which raised £1,150 for the Association. Along with her husband Peter, son and grandson Dexter and several friends, they

That’s spooky. Tara Kemp, whose grandfather Leslie Adams has MND, organised a Hallowe’en spooky ride-in for boys and girls at the Broadgate Stables at Weston, near Spalding.

With help from her mother Leigh and the stable owner Sanchia Storey, they raised a fantastic £1,850 for Lincolnshire Branch funds.

The ride for children aged five to 16 ran from 8am to 8pm and included a fancy dress and pumpkin competitions, face painting and many other activities.

braved blisters on the annual Bridgnorth walk from the Shropshire town to the top of the Brown Clee and back. Daughter Abigail, who has multiple sclerosis, was photographer for the day.

Teeing off. When Jim Leadbetter’s close friend Alan Comballack, who was also the best man at his wedding, was diagnosed with MND, Jim knew that he wanted to do something to help.

He held a golf day and hog roast at Stanton on the Wolds’ Golf Club along with fellow organisers Robin and Alan Comballack and Stan Dziuba. The event

raised over £23,000 for Nottinghamshire Branch. They presented the cheque at the MND clinic so they could see at first hand how the Branch works with the clinic to support people living with MND.

Pictured are golf day organisers, Jim Leadbetter, Robin and Alan Comballack and Stan Dziuba with clinic staff and branch representatives.


Triathlon triumph. David Wilson decided to run the New Jersey State triathlon in memory of his grandfather Robin, who died from MND. He chose to complete the event on his 23rd birthday and split the money between the Robin Wilson Tribute Fund and KEEN, a charity he volunteers for in the US.

In the swing. Kevin Rhodes nominated the Association as his charity of the year during his stint as Captain of Druid’s Heath Golf Club. He organised golf weekends, captain’s days, raffles and a weekly draw and raised the fantastic sum of £10,000. Kevin, right, is pictured with his brother Peter, left, who has

Maracycle. Brian Byers, of corporate service provider Acclaim, raised a fantastic £1,800 for the Association in the Isle of Man by cycling from Belfast to Dublin

Jungle challenge. Ray Evans ran an epic race through the Amazon jungle’s rivers, swamps and dense rainforest in hot and humid conditions while carrying everything he needed on his back.

The six-day, 220km challenge last October was immensely tough and saw Ray raise a wonderful £1,365.

He explained: “In the jungle you can’t take your eyes off the floor for one minute otherwise you trip, there are roots and tree stumps all covered by leaves and rotting vegetation, along with ants and God knows what.

“This is the hardest thing I have ever done, not just physically but mentally. It was an experience of a life time. I won’t be repeating it, but it was worth every minute.”

Nice dress. A dress may not be the usual choice of attire for a bike ride – particularly for a man – but that’s exactly what Amar Kumar wore when he jumped in the saddle.

Amar, along with 25 of his friends, did a sponsored cycle and pub crawl in ‘drag’ visiting coastal villages in a circular route on the north Norfolk coast last August.

Amar and his sister Lili organised the event in memory of their mother Carol Kumar, who died from MND. The event raised a magnificent £1,500 for the Association.

already raised £7,000 for the Association by running four half marathons. Kevin’s son, Matthew, centre, ran the Paris Marathon last year, and recently climbed Kilimanjaro raising in excess of £15,000. Between them they have raised a massive £32,000 for the Association.

and back over two days, covering 220 miles. Approximately 850 cyclists set off on the ‘maracycle’ from Belfast, with about 500 completing the full distance.

editor’s desk


The Motor Neurone Disease (MND) Association The MND Association funds and promotes research to bring about an end MND. Until then we will strive to enable everyone with MND to receive the best care, achieve the highest quality of life possible and die with dignity. We will also do all that we can to support the families and carers of people with MND.

The Association is a charity and we rely on voluntary donations. Our vision is a world free of MND.

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

Website www.mndassociation.org

Online forumThe MND Association’s online forum provides a safe place for people affected by MND to share experiences and support each other with the challenges of living with the disease. There are separate discussion areas for introductions, discussing life with MND and for carers.There is also an ‘off topic’ area for non-MND related chat. Registered users may also send private messages to each other.http://forum.mndassociation.org

MND Connect MND Connect offers a quick route to advice, practical and emotional support and directing to other services and agencies.

Tributes have been paid to Alan Horwell, in recognition of the huge contribution he made towards improving the lives of those affected by MND. Alan passed away earlier this year just weeks after resigning as a trustee due to ill health.

His many contributions to the Association include

not only his roles on the Board as trustee and vice chair, but also his involvement with our branches.

The committee of the Isle of Wight Branch said Alan will be remembered for the enormous help and support he gave the branch during his time as Chief Executive at the Earl Mountbatten Hospice.

“There is no doubt that without Alan’s help and dedication we would not have been able to pioneer one of the first ‘Possum’ Rooms to be located within a hospice. Alan’s willingness to help, wherever and whenever possible, has ensured that here on the island we provide the very best

facilities for people living with MND.”Alan moved to Northamptonshire

and attended open meetings and fundraising events at the Northamptonshire Branch.

Kevin White, branch chair, said: “Alan always provided advice and wise words. His experience was invaluable both from his professional life and his work on a national scale for MND. He will be sadly missed by us all.”

Former Chairman of the Association’s Board of Trustees , Alan Graham said Alan would be missed with ‘gratitude and affection’.

“His experience, expertise, wisdom, determination, pragmatism, sound advice and personal strength have led to changes in the organisation which will stand it in good stead for years to come.”

Members of the Association’s Board of Trustees paid tribute to Alan at their January meeting.

Alan Horwell

Prof Douglas Mitchell

About us

Prof Douglas MitchellPreston MND Care Centre Director Prof Douglas Mitchell, has died. He was 59.

Prof Mitchell’s career took him to the Royal Preston Hospital in February 1986 as a consultant neurologist having developed a specialist interest in MND when serving as a senior registrar in

Edinburgh. Inspired by emerging clinical

practice in the United States, he highlighted the need for a multidisciplinary approach for MND patients and their carers, resulting in the Preston MND Care facility being formed in 1993 – the first of its kind for patients with MND in the UK.

Following additional funding from the MND Association in 2005, the Preston MND Care and Research Centre opened giving people with MND access to regular and timely access to a range of health and social care professionals with particular skills and knowledge relating to the disease.

Prof Mitchell was a member of the

Obituaries

Association’s Research Advisory Panel from 1988 to 1997, including a term as Chairman.

He was an active MND researcher, whose interests ranged from investigating environmental and genetic causes of MND, through to clinical studies looking at speeding up diagnosis and improving the management of symptoms. His recent MND research at an international level focused on the development of a system for coordinating registers of MND patients across Europe.

He used his clinical expertise as a valued member of the Dementias and Neurodegenerative Disease Research Network (DeNDRoN) an NHS-led network of research collaborators – patients, carers, academics, clinicians and support staff – working together to develop and deliver new high quality clinical research.

Prof Mitchell will be sadly missed by the MND Association community.

Alan Horwell


Together time From breathtaking views and gorgeous walks, to stunning houses and bewitching tales. We're closer than you think, so come along for a visit. Why not ask about our Access for All Admit One Cards which allows a disabled visitor to take their essential companion, or carer, into our places, or see our free Access Guide for details of the access provisions at our properties. For information on how to obtain Admit One Cards or to request an Access Guide

Call 01793 817634 or email [email protected]

MND is what I have been told I have got,My body will change but my mind will not.

I know I will deteriorate day by day,Because this disease is here to stay.

I am really not sure what is in store for me, Confined to a wheelchair I soon will be.

New chapter in readingFive years ago I was diagnosed with MND and for the past 18 months I have been unable to make any use of my hands. As a consequence, I was no longer able to read a book for myself.

At Christmas I was given an Amazon Kindle, an E-book reader. Thanks to this clever device I am able to read independently again. This has improved my limited quality of life immensely, as I can once again enjoy reading a book at my own pace.

As my movement is now extremely limited, and I can only move my head, I use a head-mounted page-turning device of my own design. I hope that my idea may be useful to others.

David Suett

There was a timeThere was a time I could walk and talk and take time to careBut now time has come and I am stuck in this old chair There was a time of being carefree and younger in my youthThe days of childhood, when I went out to playThose I remember and those that have gone away There was a time I thought I’d live forever a time that never wasBut now is the time if only I could be set free There is a time a special person comes to see me as I amShe brings a ray of sunshine anyway she can There is a time I sit and stare but come this special personwho brings a bunch of flowers and a lot of time to care There was a time, what was the time, I visit a person with MNDsee it could have been me

Angela NewtonNew member and Association visitor for

South East Wales Branch

We felt we must write to let you know of the fantastic support we have received over the last two-and-a-half years from our local support group in Chelmsford, Essex.

My grandmother was diagnosed with MND in 2008. Sadly she passed away on 24 January 2011.

She was discharged from hospital in July 2008 with just a booklet on MND. Naturally we were anxious and did not know where, or who to turn to. However a relation put us in touch with the support group, we telephoned Steve White and never looked back.

An Association visitor came to see my grandmother soon after. At our first meeting in Chelmsford we were all made very welcome and after a couple of times felt part of one big happy family.

The group’s help was endless and they advised us on many aspects of support. They were not just there for my grandmother but also my grandfather and extended family. We could not have coped without their support.

Steve and Ann White are very dedicated, conscientious and work very hard for the group. They are always there for you whenever you need help or advice. Nothing is ever too much trouble for them. There is also good support from committee members who are also very dedicated.

It is a caring, friendly group and we have made some good friends. We will still attend meetings, support the group, promote awareness of MND and fundraise to help fight MND.

Daniel and Edward Rawlinson

We couldn’t have coped without support

Letters

Riluzole is the medication that I have to take,To slow down the progress and keep me awake.

Emotions run high as I explain to my friends why,My life is changing and this condition makes me cry.

At first there is not much change to see,Life goes on for while just the same for me.

I am told by the experts to do things while I can,The day will soon come when I don’t give a damn.

Christine Martyn has written this poem as a tribute to her mum Thelma Hallsworth. Here we share the opening lines.

MND and me

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Information, advice and support• MND Connect• Printed publications• Educational opportunities and service

development advice for healthcare professionals

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

Online forum• Our online forum provides a safe place

for people affected by MND to share experiences and support each other with the challenges of living with the disease.

http://forum.mndassociation.org

Equipment loan• A range of care equipment can be

loaned to enable continuing independence and comfort for people with MND

Financial support• Financial support may be available to

help families with additional costs which may arise from living with MND

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 and support on all aspects of MND

Monday to Friday: 9.00am to 5.00pm and 7.00pm to 10.30pm

Visit: www.mndassociation.org

thumb print spring 2011

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