Autumn_2010

The magazine of the Motor Neurone Disease Association

Thumb PrintAutumn 2010

• Your 2010 Impact Report• Spreading our message of incurable optimism

inside

contents

02 thumb print Autumn 2010

4NewsIncluding the latest research developments, the Government’s response to our campaign and a cricket stars’ gathering.

8NICE issue guidelines on NIVWhat is NIV and what do the guidelines mean for people affected by MND?

10Prof Nigel LeighIn our series of profiles we focus on Prof Nigel Leigh who, after a long and distinguished career in MND care and research, retired this summer.

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

16Incurable optimismOur latest awareness raising campaign is inspiring people across the country to join our movement of optimism.

18 Research news

19 Meet our new chairMark Todd, our new chair, explains his motivation for volunteering for the Association and his aspirations for the future.

22 Annual conference round upAlan Graham has handed over the baton as chairman of the Board of Trustees.

22 Getting involvedAn increasing number of our volunteers come to the Association without any direct personal experience of MND. Read how Mike Cronogue did just that through the website do-it.

24 The difference you makeLearn what happens to the money you raise and how it really makes a difference to those who lives are affected by MND.

26Walk to d’feet MNDIt’s been another great year for this national event with walks taking place up and down the country in all weather conditions.

28 Fundraising Staff from our corporate supporters get on board from the wacky to wonderful activities.

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

32Editor’s deskA selection of your correspondence and information.

12

24

26

10

4

Cover image: Patrick Joyce, the face of our awareness campaign – Incurable Optimism. Full story page 16.

16

30

22

8

We also say goodbye to Prof Nigel Leigh, who has retired after a long and distinguished career at King’s College London where, working closely with the Association, he has led, shaped and developed MND research in the UK and around the world. See page 10.

None of our work would be possible without the continued support of you, our members, and all those who tirelessly raise funds for us. For those looking for inspiration, many fundraising ideas appear in our exciting new Events brochure, enclosed with this copy of Thumb Print.

We know our events appeal to people of all ages and from all walks of life, including those who may not have personal experience of MND, so please pass this booklet on to your friends, colleagues and family.

My sincere thanks to you all for your continued support.

Warmest regards

Dr Kirstine Knox,Chief Executive

chief executive

thumb print Autumn 2010 03

Diarydates2010/11

Changing timesWe are all living in changing times. The economy, politics and health and social care provision are all in a period of transition.

The coalition Government has published a White Paper setting out its long-term vision for the NHS in England, which will see the health service undergo a major restructure with GPs set to take on greater responsibility for spending much of the NHS budget.

The Government’s vision of a Big Society, putting more power into people’s hands, will have profound implications for us as an organisation whose mission is delivered largely through volunteers.

Together we must do all we can to grasp the many opportunities these and other changes will provide for the Association to influence, educate and inform decision-makers to ensure the best results for people affected by MND.

Our changing society was also the focus of Mark Todd’s address to delegates at our Annual General Meeting last month, as he took on the role of chair. We are very fortunate to have Mark as our new chair and his wealth of experience will, I know, be invaluable.

With sadness we said farewell and thank you to Alan Graham as he stood down after six years as chairman. During his 13 years as a trustee, Alan has played a significant role in moving us ever closer to our vision of a world free of MND.

Walk to d’feet* MND††

All year round

Run Morocco Challenge††

Morocco 12-18 November

Firewalk††

Northampton 20 November

International Symposium on ALS/MND*

Florida, USA 11-13 December

London Marathon††

London 17 April

Trek The Great Wall of China††

China 6-15 May

Study Day for Healthcare Professionals*

TBA 14 June

MND Awareness WeekNationwide 18-26 June

10k British Road Race††

London 10 July

Mount Kilimanjaro Trek††

Tanzania 5-15 October

International Symposium on ALS/MND*

Sydney, Australia 30 Nov -2 December

*Enquiries contact the conference team on 01604 611845 for details†† Enquiries contact the fundraising team on 01604 611860 for details

Thumb Print is the quarterly magazine of the Motor Neurone Disease Association. The Editor is always interested in your comments and welcomes potential contributions for future issues. Material may have to be edited prior to publication. Potential advertisers should contact the Editor for a ratecard.

Please write to The Editor, Thumb Print, MND Association, PO Box 246, Northampton, NN1 2PR or telephone 01604 250505. Fax 01604 611858. Email [email protected]

Website: www.mndassociation.org

The views expressed in Thumb Print are not necessarily those of the Association. The products and services advertised or promoted should not be taken as recommendations by the Association, who cannot be held responsible should any complaint arise.

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

news


It is the first time that they recognised that the NSF for long term conditions…has not delivered for people with MND...

We used MND as a case study to demonstrate how good care costs less than poor care...

Kirstine speaks at Conservative Party conferenceWe took the case for better services for people with MND to all three political party conferences – Liberal Democrat, Labour and Conservative. We ran five fringe events (seminars) over the three conferences and Kirstine Knox, our Chief Executive, spoke at one of the fringes at the Conservative Party conference.

Three of our fringe events focused on quality and value for money in health and social care and we ran these in partnership with Help the Hospices and Parkinson’s UK. We used MND as a case study to demonstrate how good care costs less than poor care – better for the person living with the disease, their family and the public purse.

The other two fringes focused on neurology and our President Prof Colin Blakemore talked about the challenges of neurological conditions in both scale (eight million people in England and growing) and complexity. He also talked about the role the third sector and patients can play in shaping quality services that

offer value for money. Our partners for these fringes were the Multiple Sclerosis Society, Parkinson’s UK and Neurological Commissioning Support.

We also held a number of one-to-one meetings with MPs and attended a wide range of other fringes to make the case for better services for people with MND and increased funding for research.

Our petition calling for a National Strategy for MND was signed by 18,345 people – a big thank you to everyone who signed it. We have now received a response to the petition from Paul Burstow, Minister of State (Care Services), Health.

It says: “I am grateful to you for bringing to my attention the strength of feeling behind the call for a National Strategy for MND. Whilst the National Service Framework (NSF) for Long Term Conditions sets standards of care for people with a range of long-term neurological conditions, including MND, I do recognise that, in many localities, the NSF has not yet delivered the high quality care and support that people with MND require.

“As you may know, we have recently published the White Paper Liberating the NHS, which sets out our plans for NHS reform and our commitment to deliver excellence and tackle inequalities. Our vision for health and social care, as set out in the White Paper, will necessitate a fresh approach to developing clinical strategies, which will focus on improving outcomes whilst giving maximum freedom to local services to innovate and improve.”

To read the full response from the Government please go to www.mnd2010.org

While it is disappointing that the Government has not agreed to a National Strategy, the strength of feeling on the subject has clearly got through. As a result of our campaigning, the Government has noticed that improving care for MND poses a significant challenge and needs a serious response. It is the first time it has recognised that the NSF for long term conditions – which is the Government’s current standards for neurological conditions has not delivered for people with MND and reform is needed.

The White Paper Liberating the NHS (mentioned by the minister in his reply to our petition) outlines proposals which will mean health and social care will go through a radical period of change over the next few years, and lots of difficult decisions will need to be made. There has been a consultation process for the White Paper, and we have been working behind the scenes to lobby and influence the Government to make sure that MND is a priority in all these decisions and the reforms in health and social care achieve the best outcomes for people with MND.

To keep up to date on all our campaigning and influencing:• Follow us on Twitter at twitter.com/

mndcampaigns• Join us on Facebook at facebook.

com/mndcampaigns• Read our blog at mndcampaign.

wordpress.com

Government responds to our campaign

This December, researchers, clinicians and health and social care professionals from around the world will gather in Orlando, USA at the 21st International Symposium on ALS/MND to discuss the latest scientific and healthcare developments in MND.

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

To get the latest news from Orlando, log on to the ‘My Symposium’ section of our website www.mndassociation.org/mysymposium. Kelly Johnstone from our research development team will be writing a blog, an online diary, keeping you up to date with the event which runs from 11-13 December. Her blog will report on the highlights of this year’s conference as well as giving an insight in to what goes on when nearly 1,000 experts are gathered under one roof.

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


There are currently 2,936 samples in the DNA bank from 1,503 MND patients, 956 controls and 477 family members.

Previous research has revealed that a DNA region in chromosome 9 can pre-dispose people to developing a familial (inherited) form of MND. This however, is the first research to show that chromosome 9 plays an important role in the development of all forms of MND.

The research study, the results of which were published in Lancet Neurology on 31 August 2010, was led by Prof Ammar Al-Chalabi at King’s College London. It studied the entire human genome to identify chromosomes that hold disease-causing genetic areas.

The researchers scanned 599 DNA samples from the MND Association’s DNA Bank. These samples were donated by people with the sporadic form of MND. In addition, 4,144 samples from people unaffected by MND (control samples) from other DNA banks were analysed. The researchers then verified these results using a total of 4,312 samples from sporadic MND patients and 8,425 control samples. Samples collectively came from the UK, Netherlands, Belgium, Ireland, Sweden, Italy, France and the USA.

This study reflects the huge commitment and willingness of the worldwide MND research community to share research information – representing the genetic information of more than 12,000 people.

Combining the efforts of international MND research teams has allowed the largest genetic study of MND to have taken place.

Prof Al-Chalabi explains: “We already know that a DNA region in chromosome 9 is involved in some people with familial MND but our work has confirmed that this

chromosome actually plays a role in sporadic MND. In fact, our study has narrowed the DNA region to one that contains just three genes.

“Finding which gene in this DNA region causes MND and why, will unlock another piece of the MND puzzle and may allow us to understand enough about the disease so that we can design a specific treatment.”

Dr Brian Dickie, our director of research development, adds: “Chromosome 9 has been a suspect for MND genetics detectives for a long time. But pinning down the precise genetic factor involved has proved elusive! It’s exciting that we are making significant progress in understanding this part of the overall MND jigsaw puzzle.

“Our DNA bank is a relatively simple study to take part in but it really means a lot to the researchers who use the samples. I’m excited that we are seeing the first results of the DNA bank project. There are many people to thank: to everyone who has donated their DNA sample, the

Board news onlineKey decisions and actions from Board of Trustees meetings now appear on our website. Visit www.mndassociation.org/boardreport

Our DNA bank plays crucial role in largest MND genetic study

doctors, nurses and lab technicians who helped collect the samples and the principal investigators of the project.”

People who take part in our DNA bank study are asked to give a blood sample and answer some clinical questions. More information about our DNA bank is available on our website at: www.mndassociation.org/dna_bank or by contacting our research development team on 01604 611880 or at [email protected]

You can read more about this research on the ‘news in research’ pages of our website at: www.mndassociation.org/chromosome9

MND researchers working in collaboration across Europe and the US have confirmed that a region of DNA within chromosome 9 plays an important role in both sporadic and familial forms of MND and a form of dementia called fronto-temporal dementia (FTD).

Prof Ammar Al-Chalabi

news


Chris and Stuart were joined by former England cricketers including Philip De Freitas, Nick Knight, Devon Malcolm and Gladstone Small for the inaugural Chris and Stuart Broad six-a-side cricket tournament at the Wellesbourne cricket club in Warwickshire.

The event was held in memory of Chris’s wife and Stuart’s stepmother, Miche Broad, Miche was diagnosed with MND in 2009 and died in early July 2010.

Dedicated to raising awareness of MND and money for research, Miche’s final wish was for the fundraiser to go ahead and the day was held in celebration of her life.

The cricket stars joined teams from businesses including Jaguar and Adidas at the event, organised by Sector Marketing, which drew a crowd of over 1,200.

Speaking on the day Chris Broad said: “It’s been a remarkable day and one that Miche would have been delighted with.”

An MND Association team was captained by John Collins who lost his own father Stephen to MND and who also acted as MC for the event. John said: “Stuart and Chris were complete gentlemen. It’s humbling to meet your heroes when they are dealing with the

same thing you’ve dealt with.”The cricket day will take place

again in 2011 and full details will be publicised in advance of the event.

In August Chris and Stuart hosted a fundraising dinner at Lord’s. Again stars from the cricket world were out in force with Stuart’s England team mates including Matt Prior, Jonathon Trott and Steven Finn joining the occasion.

Along with former England cricket captain Mike Gatting, other figures from the world of sport also showed their support with rugby stars Gavin Hastings and Kenny Logan and QPR manager Neil Warnock among the guests in the historic Long Room.

After guest speaker Bob ‘the Cat’ Bevan had entertained the guests, and MND Association President Prof Colin Blakemore had given a speech, a fundraising auction was conducted by Jonny Gould.

A few days later Stuart paid a further tribute to Miche when he scored his first test century for England at Lord’s saying: “I thought of my stepmum once I’d got to my hundred. I would have liked her to be at Lord’s and I know she’d have been jumping around for joy.”

To date the events and donations in Miche Broad’s name have raised over £60,000 to fund research.

Cricket stars come out to bat for MNDStars from the world of cricket came together for a very special day hosted by former England international Chris Broad and his son, current England fast bowler Stuart Broad.

...Miche’s final wish was for the fundraiser to go ahead and the day was held in celebration of her life.

Lighting up Lives at Christmas

Light up a life with a message to an MND Association care centre near you here:

Lorem ipsum dolor sit amet, consectetuer adipiscingelit, sed diam nonummy nibh euismod tincidunt ut

laoreet dolore magna aliquam erat volutpat.

My local MND Association Care Centre is:


Investigating benefits We recently met with the Department for Work and Pensions (DWP) to discuss our concerns that people living with MND have been incorrectly assessed as fit to work following their work capability assessment (WCA).

Most people with MND who claim Employment Support Allowance (formerly Incapacity Benefit) do not have to undergo a WCA: ordinarily the information given on the application form is sufficient. In some cases, however, a WCA is required. This examination determines whether the claimant is granted the benefit, or classed as fit to work.

Following our discussions, the DWP and Atos, the company contracted to conduct the assessments, have agreed a special redress procedure for people with MND who have been incorrectly assessed.

We have launched an appeal to identify anyone with MND who has attended a WCA and been assessed as fit to work.. We will forward these details to the DWP and Atos who will review the decisions on a case-by-case basis. An information sheet asking for specific details of any cases of which they are aware, has been circulated to our regional care development advisers (RCDAs), volunteering development co-ordinators (VDCs), Association visitors (AVs) and MND Care Centre co-ordinators.

If you know someone who has been affected in your area, please ask your AV to submit the case. For general questions about benefits contact MND Connect.• ITV’s new breakfast television programme Daybreak recently launched with an investigation into ESA. The programme featured Gary Dennis, 47, who was diagnosed with MND in October 2009.

Gary had to undergo a WCA in March, as part of the process in claiming ESA. He was interviewed by TV medic Dr Hilary Jones, who said he was appalled that Gary has been refused this benefit and that according to the assessor he should be able to return to work in three months. We asked Gary to take part in the feature to help show how some people are being failed by the system.

Our 18 specialist care centres provide essential support for people living with MND and help ensure access to a complex range of care, in one place, at one time. The effective co-ordination of treatment and ready access to medical professionals can have a significant impact on a person’s quality of life and can help slow the rate of progression of this devastating disease.

Our care centres provide a vital service to approximately 2,000 people living with MND annually, and we know that more people are using these services each year – a trend we expect to continue. The total annual running cost of the Care Centre Network Programme is over £784,000 which is why your support is so urgently needed.

This year’s appeal will be mailed during the first week of November, and any gift you make will be allocated to your nearest care centre so you can be sure you are directly helping to improve the quality of

life for people living with MND in your area. The appeal also encloses a Christmas decoration for you to return to us with a message of support for everyone who visits and works in our care centres.

Please look out for your red envelope and help to light up lives this Christmas.

The new officers of the group were voted in at the meeting and are Gavin Williamson MP (Conservative, South Staffordshire) as Chair, Paul Blomfield MP (Labour, Sheffield Central) as Vice-Chair, Greg Mulholland MP (Liberal Democrat, North West Leeds) as Vice-Chair and Lord Walton of Detchant as Treasurer.

The meeting heard from our Patron Joel Cadbury who spoke about the David Carleton Paget (DCP) Wheelchair Service and its success at providing appropriate wheelchairs to people with MND very quickly. We are looking to work in partnership with the Government to provide this service and the group agreed to seek a meeting with Health Minister Paul Burstow MP to discuss this proposal.

Liam Dwyer, who is living with MND, spoke movingly about his struggle to access a suitable wheelchair from the NHS and how the DCP had stepped in to provide one.

Our Chief Executive Kirstine Knox talked to the group about the proposed new changes to the NHS and social care and how this might impact on services for people with MND. The group offered to support our campaigning work to ensure that the needs of people with MND are taken into account so that the new proposals can deliver effective services for people with MND.

Light up lives this Christmas Following last year’s successful Christmas appeal, which raised a fantastic £106,000 for the special financial grants we make to people living with MND, this year’s appeal aims to ensure the continued funding of our vital Care Centre Network Programme.

All-Party Group campaigns for better access to wheelchairs The All-Party Parliamentary Group on MND held its first meeting of the new Parliament in September.

The group offered to support our campaigning work to ensure that the needs of people with MND are taken into account...

Our 18 specialist care centres provide essential support for people living with MND...

Lighting up Lives at Christmas

living with mnd


Non-invasive ventilation

We have long recognised the benefits of non-invasive ventilation (NIV) for some people living with MND.

Alongside the All-Party Parliamentary Group on MND, we actively lobbied NICE to produce a guideline on the use of NIV to improve both the provision and quality of care

received by those with MND who would benefit from it.

“Research has proved NIV can improve the quality of life and the length of survival for many people with MND. However we believe that many who would benefit

from NIV are not being offered it,” said Karen Pearce, our director of regional care south.

“We hope that the new clinical guideline will mean more people have access to this intervention if they so choose, and if it is the right treatment for them. We welcome the guideline which will improve care for people during such a difficult time in their life.”

What is NIV?

NIV is used to assist breathing. Ventilation is provided through a portable machine (approximately 16lb and a foot square), which runs from a normal power socket or battery.

It can be carried under a wheelchair if necessary. In all cases air is sucked in, filtered and pumped into the lungs via a facemask or nasal tubes.

There are several systems providing portable non-invasive ventilatory support.

What are the benefits of using NIV?NIV improves breathing and can offer the following benefits:

• Effective relief from breathing difficulties

• Selective usage – it can be used intermittently when needed

• Portability

• It does not affect speech

• NIV can be controlled and it can be stopped if no longer required

• Improved sleep at night (in most cases) which leads to less fatigued muscles, more energy, increased appetite and a reversal of some of the symptoms caused by the former breathing problems.

The National Institute for Health and Clinical Excellence (NICE) recently produced a short clinical guideline for England and Wales on the use of non-invasive ventilation (NIV) for people with MND.

But what is NIV, who can use it and what does the guideline mean for those affected by MND?

“At diagnosis it isn’t unusual to hear people commenting ‘at least MND doesn’t affect the mind’...”

“Research has proved NIV can improve the quality of life and length of survival...”


A user’s perspective:When we launched our respiratory management campaign in 2007 we spoke to a number of people living with MND about their experiences of NIV. This is what they told us:

“NIV is perfect for me. Some people find it difficult at first, but you have to trust the ventilator to help do the breathing for you.”

Ken Paine

“As soon as she was on NIV you could immediately see the difference. She looked so much better; her complexion was back along with her rosy cheeks! The transformation was amazing.”

Carer and husband, David McGill

“When I got home I didn’t want to use my ventilator. Within three days I was completely used to it. MND does not stop me I do everything I want to. Now I just bring my ventilator with me. For me NIV has been the best thing. I would not be without it.”

Dawn Tilley

“I sleep better which means I wake more refreshed, my day time breathing is much improved, my voice is stronger and I have more energy in the day. The hospital was right it’s not a cure but it has changed my life.”

John Watkins

However, NIV will not prevent weakening of the respiratory muscles and it will not slow the progression of MND.

Who can use NIV?Ventilation is not suitable for everyone and in some areas it is not offered as an option. Suitability will be decided after respiratory assessments and a trial of assisted ventilation.

Is NIV easy to use?NIV can be used at home and requires very little maintenance or professional assistance (following training in its use).

Although NIV is usually introduced to assist breathing at night, the portable device used to deliver the NIV can, if required, be use inside and outside the home during the day.

However, it is not suitable for everyone and even when it is appropriate it may take some time to get used to NIV.

The NIV machine needs to be timed to coincide with an individual’s normal breathing pattern. The flow rate of the air can be adjusted to achieve this. Some people are unable to tolerate this or the facemask or nasal tubes initially.

A desensitisation regime may help. This may consist of wearing a mask with the machine running at a very low pressure for 15 to 30 minutes, once or twice a day, whilst listening to music or watching TV so that attention is not focused on the mask. This is done for as many days as required to feel comfortable with the mask on.

It may be a good idea to talk to someone affected by MND who is already using NIV to help make a decision about any treatment option. They may also help later with hints on coping with any difficulties learnt from their practical experience.

What does the NICE guideline do?The new guideline, (clinical guideline 105) makes recommendations about treatment and care, however it does not override clinical judgment.

The implementation of the guideline is the responsibility of local NHS services.

We believe its publication will mean greater awareness of MND and improved care and support of those affected by the disease. We will be working proactively to ensure it is applied across England and Wales to deliver better services for people living with MND.

It may be a good idea to talk to someone affected by MND who is already using NIV to help you make a decision...

Find out moreWe produce a number of information sheets and other publications with advice on the use of NIV and breathing.

These are available to download from our website, or alternatively contact MND Connect, on 08457 626262 or email [email protected]

For more information on the NICE guidance visit www.nice.org.uk/CG105

© K

ent N

ews a

nd P

ictu

res L

td


profile

A discussion with a colleague over a cup of coffee was to spark Prof Nigel Leigh’s 25 year passion in MND research. It was back in 1986, while working as a neurologist, that he was casually asked if he’d thought about working on MND.

“I recall muttering that not much was going on in that area,” he explains. “But a few hours in the library revealed how wrong I was. We decided to study MND spinal cord samples and set about writing a grant application to the MND Association. Our application was successful and this work introduced me to the international MND research community.”

This was the start of a long-term relationship with the Association that would lead to a number of major breakthroughs in the area of MND research.

Prof Leigh’s work led him to identify collections of proteins in the motor neurones from spinal cord affected by MND. “I will never forget a Saturday morning in the summer of 1988 when, in the basement of St George’s Hospital using a borrowed microscope, I saw for the first time these delicate and unmistakably ‘new’ structures. Feeling poetic, I coined the term ‘skeins’ as they reminded me of tangled skeins of fibre or wool.”

These skeins, alongside irregular ‘blobs’ which are composed of the same proteins, are now recognised as the molecular hallmark of MND. “It was striking that these protein collections were present in virtually all sporadic and most familial cases of the disease,” he explains.

It was a pivotal discovery which thanks to modern technology and outstanding talent is now rapidly unfolding and proving to be significant in increasing our understanding of MND. Researchers have identified that the TDP-43 protein is a major component of these protein collections and is found in up to 90% of all cases of MND.

Since then Prof Leigh has played a critical role in shaping and developing national and international MND

research. As well as his research successes he’s been influential in organising many MND clinical trials in the UK, including the trial of riluzole which is the only licensed drug for use and the current trial investigating the effects of lithium carbonate as a possible treatment. He’s also been influential in developing the careers of world-class

scientists and clinicians.Throughout his own career, Prof

Leigh has also significantly influenced care for people living with MND. Aware of the medical profession’s failure to help people with the disease 30 years ago, he was determined improve care for his patients.

He says: “In the 1970s and 1980s there was no infrastructure for multi-disciplinary care and support. This was demeaning for patients.

My generation had no training in how to give the diagnosis or to

A discussion with a colleague over a cup of coffee was to spark Prof Nigel Leigh’s 25 year passion in MND research.

Focus on: Prof Nigel LeighThroughout 2010 we’re profiling exceptionally talented scientists and clinicians who are funded by the Association. In this issue we focus on Prof Nigel Leigh who, after a long and distinguished career in MND care and research, retired this summer.

Prof Nigel Leigh


provide care and support. “Fortunately there was a handful

of clinicians around the world who led the way in providing excellent multi-disciplinary and palliative care – clinicians who inspired me to believe that I could help make a difference for my patients.”

His move in 1989 to King’s College London provided Prof Leigh with the opportunity to develop a much more ambitious programme of laboratory and clinical research and to build a truly multi-disciplinary MND care programme.

In 1990, in response to a call from the Association, he and colleagues submitted a proposal to establish an MND centre for care and research based at King’s. Their application was successful and Prof Leigh became the director of the King’s MND Care Centre, the first centre in our network to be established. We estimate that he may have seen more MND patients than any other neurologist in the UK.

Prof Leigh believes there has been a radical shift over the past 20 years in the provision of multi-disciplinary care for people with MND, although he is aware the definition of ‘multi-disciplinary’ is fluid around the UK and the involvement of specialist palliative care is not as wide spread as it should be. “The involvement of palliative care in the MND clinics at King’s has made a huge difference to patient care but this is difficult to prove. Research is urgently needed

to demonstrate how palliative care is helpful. I hope this will be a priority for the future.”

Dr Brian Dickie, our director of research development, says: “Prof Leigh’s enthusiasm, dedication, skills and leadership have helped move MND from what was a relative ‘backwater’, to the forefront of neurodegenerative disease research and care. Under his guidance, King’s has grown into a leading international centre for the study of MND, as well as an outstanding training ground for many of the leading scientists, clinicians and healthcare professionals working in the field today.”

So as Prof Leigh hands over the baton to his colleagues, what are his final thoughts?

“Like every researcher, I owe an enormous debt to other clinicians and scientists, past and present. It gives me great pleasure to know I’m handing over the baton to talented people who are passionate about the disease.”

He continues: “The general consensus by MND researchers is to go where the light is shining the brightest. In 2010, it’s enormously encouraging that there are now many points of light we need to investigate. I believe the MND research community is at the threshold of real change.”

“I believe the MND research community is at the threshold of real change.”

News in brief

Glittering eventA glamorous gala ball raised over £60,000 for the Association – part of one man’s goal to raise £1 million before he dies.

The event, at the Guards Polo Club, Windsor, was another of ex-rugby player Simon Adams’ fundraising attempts to reach the magic six figure number. Simon, 46, is working through a ‘bucket list’ of things to do before he dies.

His friends Martin and Tyne Langford pulled out all the stops for this latest fundraiser. Simon, a head teacher now living in Devon, kept in touch with Martin Langford. Both men used to play for the Old Windsorians.

The gala ball, subtitled The Ginger Prince Ball after Martin’s nickname for Simon, also included an auction and raffle.

The Ginger Prince Ball Committee (from left): Tyne and Martin Langford, Maxine and Simon Adams, Claire Tucker (Simon’s sister), Robert Jones (behind), Michelle Jones and James Tucker.

Close shaveRory Penman decided to brave the chilly British weather and get his head shaved in honour of his dad who has MND. Rory’s mum, Sue Penman says: “It was Rory’s way of trying to do something to help.”

Sue’s work colleagues at Avon Ski and Action Centre in North Somerset also helped by raising over £167 at an end of seasion social.

Prof Leigh in the lab in 2002

personal experiences


Telling it as it isThe reality of living with MND

A regular series of reader’s personal contributions of sharing their stories of living with MND.

Caring for DianeBrian Sackett and his wife Diane enjoyed many wonderful years together. Here he talks about their determination to focus on the happy times as MND took hold.

Diane was diagnosed with MND in May 2006. We’d never heard of the disease before and it was a real jolt to us both. We cried a lot and talked about how it would affect us. From that day I became her full-time carer – not quite what I had in mind for my retirement.

The hardest part was telling our children, family and friends, but once we visited them they could see that Diane was still the same person. Some friends stopped making contact and we were quite hurt by that.

Diane and I had our own mantra together: if this is the best I’m going to feel then I’m going to make the best of it.

As her carer, I had to make sure that I didn’t treat her as an invalid. She was still the woman I wanted to be with. I encouraged her to keep her independence for as long as possible. Depending on how she felt, each day was a new challenge. We might go for a walk, go for a drive, read or watch TV.

Learning household tasks was a major new experience for me, a mere male who couldn’t multitask. Diane had plenty of patience and taught me very well. She got very frustrated when she could no longer do the simple things like brushing her hair

and putting on her make-up. In the end she agreed to let me help her.

Diane was very proud of her appearance so we made arrangements with her hairdresser and beautician for them to visit her at home if necessary. The hairdresser gave her a new short style which was easier for me to manage. The beautician did her nails for her and both of them gave me plenty of advice.

I knew it was important for me to keep healthy so I devised a programme of exercises for myself. Diane was worried about me hurting my back lifting her into the bath so we had a shower installed, and had great fun taking many showers together!

We were very well looked after by the professionals. They became friends and arranged visits together at times to save Diane the hassle of explaining things over and over again. She also looked upon these visits as social occasions rather

than medical visits, and many a laugh and giggle was to be heard as they exchanged stories over a coffee and biscuits.

Diane developed a problem with saliva building up in her throat. One solution was to drink plenty of sparkling water and take the prescribed Mucodyne syrup, both morning and night.

Diane was given a Lightwriter for phrases and sayings. She programmed them in but never used them – as long as she could use her voice she was going to. Sleeping was a major obstacle to overcome. She couldn’t sleep on her back so we experimented using various pillows, finally resolving by using a shaped foot wedge under a V pillow, supporting her up in a 45 degree angle.

Diane got tired very quickly so around midday I would tuck her up in bed for a couple of hours’ rest. Somehow her body clock always woke her up in time for Noel Edmonds’ Deal or No Deal!

Life was not all sadness as we both enjoyed each other and did things together. Shortly after her diagnosis we went to Cairns in Australia to visit our son Mark and his wife Alison.

“We were very well looked after by the professionals. They became friends and arranged visits together at times to save Diane the hassle of explaining things over and over again.”

Brian and Diane Sackett


“Fatigue and weakness are the biggest hurdles.”

Sailing challengeShe may be almost completely reliant on a wheelchair to get around but that hasn’t stopped Jenny Green taking part in a European sailing championship event.

Grandmother Jenny Green, who is living with MND, has taken part in an international sailing race at the 2010 Regates Royals in Cannes to raise funds for research into MND.

With 65 of the top international Dragon crews taking part, Regates Royales is a challenging race for any competitor, but for Jenny, completing all races in the regatta was a huge task.

Jenny, who sailed alongside her husband Malcolm, was diagnosed with MND in June 2009. She said: “Fatigue and weakness are the biggest hurdles. Just preparing for a day racing, and afterwards, is unbelievably tiring and getting annoyed about the things that I cannot do anymore or

take so much longer doesn’t help!

“It is difficult moving around in the boat and balancing on the side without much help from the legs. But when

racing I can feel almost normal and there is no time for gloom and doom, as all the concentration goes on the competition.”

Jenny, who is committed to raising funds to help further scientific research, added: “I have always been an active person. My aim is to try and raise as much money as possible while

I am alive. I cannot sit back and just wait for the next part of me to stop working. I also want to make other people aware of the disease and that perhaps to encourage others to live life to the full because no-one knows what is round the corner.”

Jenny’s daughter Penny Garvin is in awe of her mum’s determination.

She said: “Considering she is nearly completely wheelchair bound now, I think her incredible strength and determination should be spread among other people with MND because she is such an inspiration!”

Jenny plans to complete other challenges and adventures to raise over £10,000 for the Association through her Jenny Green Challenge Fund. Find out more at www.jennygreenchallenge.org

“Diane was beautiful, always smiling, with never a bad word for anyone...”

Walking was taking its toll on Diane and we found a lightweight wheelchair. It gave us many happy excursions. She also loved Christmas and came with me as I played Father Christmas for children at many playgroups.

People often remarked on how soft and smooth Diane’s skin looked. We both put it down to the fact that every day after her shower or bed bath, I would give her a full body massage using Emu Oil.

We were told we both needed respite so Diane went to the Pilgrim’s Hospice in Canterbury. At first she was reluctant but when I returned to see her she was very comfortable and later she called it her second home.

We kept very involved in charity events. We organised an Easter egg hunt for family and friends and Diane wore a pair of rabbit ears and judged the fancy dress contest.

She also watched the Boxing Day fun run in Saltwood, Kent and attended a charity golf day, chatting to each of the 40 players.

By 2008 Diane was weakening and losing weight very quickly. We carried on as best we could and bought a scooter to give her a bit more independence. The hospice opened a labyrinth and we were invited to be the first couple to walk it. That was a great honour.

Diane and I celebrated the New Year but I think she was aware of her deterioration. I was horrified when she told me she thought this would be the last time she would see in the new year. She was looking very tired, but still smiling and her positive approach helped me. In April she wanted me to help sort out the jewellery and clothes she wanted to give away, a beautiful gesture.

In August, our GP advised me to prepare for the end. As always Diane and I discussed it. Her request? To change the radiator in the bathroom as she’d always hated it! I did change the radiator but Diane never saw it. She died on 3 September 2009. Diane was beautiful, always smiling, with never a bad word for anyone. For 30 years I was the luckiest man on earth.

Jenny Green

personal experiences


It takes determination to walk almost 200 miles, and even though he’s living with MND Gordon is keen to stay positive. He planned his 192-mile coast to coast walk from St Bees in Cumbria to Robin Hood’s Bay in Yorkshire – and nothing was going to stop him.

Weeks before the walk Gordon found swallowing was becoming difficult and then he lost the ability to speak. That was particularly tough as Gordon used his voice to communicate effectively. For 28 years he taught geography at Ipswich School, served on Stowmarket Town Council for 31 years and had been mayor of Stowmarket three times.

Gordon was determined to attempt the walk and using his Lightwriter, told

supporters that ‘life is for living.’ One big worry was that his swallowing problems might hinder his ability to take on enough fluids. Happily, Debbie, his dietician prescribed him a range of high calorie yogurts, shakes and build-up soups.

As a safety net it was agreed that if he wasn’t able to complete any part of the walk members of Team Paton would step in and help. Team Paton was made up of family and friends who joined him for different parts of the walk and worked hard as either

Gordon goes coast to coastLast October, at the age of 70, Gordon Paton was diagnosed with MND. Here, his wife Eve, tells us how he was determined not to let the disease beat him and set out to raise funds with an arduous walk.

“...Gordon was determined to attempt the walk and using his Lightwriter, told supporters that ‘life is for living.’”

carriers of his Lightwriter and all the high energy yogurts, drinks, soups, and jellies, (which were fantastic, but weighed a ton!) drivers, supporters, walkers, photographers, and cook and general bottle washers! In total, 30 people joined the walk at different times. There was also great support from family and friends at home who sent messages of support, home-cooked meals and a generous supply of home baking!

The coast to coast is a challenging walk for a fit, physically well individual let alone someone with MND. Gordon was determined to do it properly, walking an average of 10 miles each day and cutting not even the tiniest corner! It was an emotional moment for Team Paton when Gordon dipped his well-worn boots into the sea at Robin Hood’s Bay having walked every step of 192 miles.

Gordon, his wife Eve and their family wish to say a huge thank you to all who supported the walk and to everyone who has contributed so generously to his fundraising. He has so far raised a staggering £8,000!

If you would like to donate to Gordon’s fundraising for MND you can do so at www.justgiving.com/gordon-paton.

Timothy shows craft skillsTimothy Phillips has been building show jumps with the help of his family and friends to raise money for the Jersey Branch.

Diagnosed with MND in June 2008, Timothy is no longer able to work and finds this craft fits in well with his equestrian background.

His mother Tess has run a riding school for around 50 years and the whole family has at some stage in their lives been involved with horses and local equestrian sport.

Timothy is no exception, having been a keen competitor since childhood, in shows and jumping events.


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

“...there was a conveniently placed bench which provided an ideal spot for lunch and to admire the fantastic views.”

He was a respected architect and credited with bringing the county’s Woodhorn Museum and Archive project to fruition. His former colleague Jim Wardle said: “Roger’s influence over many building designs in the area will remain as his living memorial.”

Roger’s widow, Stephanie said: “He was very proud and passionate about this project and had a high regard for all those professionals who were involved in the design and building of the museum and archive.”

She has also been fundraising in her husband’s memory, raising £600 with a summer coffee morning in addition to the £4,000 already raised. It’s a family affair too – as sons Ben and Matthew joined Stephanie for a sponsored 25-mile trek along Hadrian’s Wall in September.

Remembering RogerA memorial plaque honouring a Northumberland architect has been unveiled in front of friends and family. The plaque was dedicated to Roger Wilkinson who died from MND in January.

“Roger loved walking and this trek with the boys seemed an entirely appropriate way of raising money for the MND Association,” said Stephanie.

Anybody wishing to contribute to the fundraising effort can do so online by visiting: www.justgiving.com/Matthew-Wilkinson0

Thumbs up for accessible coastal pathCongratulations to Ceredigion County Council in West Wales, says Mike Jefferies from Wiltshire. It has excelled in providing inclusive access to a section of the coastal path between Aberporth and Tresaith near Cardigan.

The path begins at the back of the main beach in Aberporth where there is free parking for blue badge holders.

The path climbs slowly along level tarmac paths to the top of the 400ft high cliffs where the views of the spectacular coastline opens up.

The path continues as level very easy-going tarmac path for about another half a mile.

At this point the path becomes rolled stone and more undulating but was still very easy to negotiate in my mobility scooter.

The path is also suitable for power chairs as, incredibly, I met a man halfway along who is also living with MND and he had no trouble with the entire path in his power chair.

The accessible path comes to an end at the top of the steps leading down into Tresaith village, there was a conveniently placed bench which provided an ideal spot for lunch and to admire the fantastic views. It’s about one-and-a-half miles long each way.

Mike flying the flag when England were still in the World Cup!

Stephanie with sons Ben and Matthew on the Hadrian’s Wall trek

Stephanie by her husband’s plaque

awareness campaign


Spreading our message of incurable optimism

Our message of optimism is spreading - not just in Britain but across the world.

During MND Awareness Week we launched our campaign, Incurable Optimism. The campaign features artist and father-of-three Patrick Joyce, who was diagnosed with MND in 2008 and his challenge to paint the portraits of 100 incurable optimists.

The campaign aims to highlight the amazing and positive spirit of the MND Association community and how it is this spirit that keeps us fighting the disease.

Our message of optimism is spreading – not just in Britain but across the world. The campaign has gone global with our blogsite www.patricktheoptimist.org being viewed in 97 countries including Russia, Serbia, Venezuela, Saudi Arabia and Botswana.

Massive billboard posters went up during MND Awareness Week in June at 58 sites across the national rail network covering England and Wales and 80 prominent sites across the London Underground. Four months on, many of these posters are still up. A large number of adverts are continuing to run in the Daily Mail and Mail on Sunday and we even ran an advert on the side of a lorry that was spotted across the country.

Advertising on this scale would never have been possible without the kind support from CBS Outdoors and the Mail on Sunday. Please remember

you can order A4 versions of the billboard posters to display in your own areas or use at your events.

In the eye of a stormSince the launch of the campaign, Patrick and his wife Kathy have been caught up in a media storm with newspapers clambering to interview them. We ran an advert in the Daily Mail that simply detailed Patrick’s blosite address and a photo of him in order to build up interest. From the minute the advert was printed journalists were contacting us keen to interview Patrick and his family.

Working closely with Patrick we gained coverage in The Sunday Times, Mail on Sunday, The Sun, Daily Express, The Big Issue, The Weekly News, Bristol Evening Post, Somerset Standard,

Practical Parenting, and Artists and Illustrators. We worked with Amanda Byram, our celebrity ambassador and presenter of BBC1 prime-time show Total Wipeout who appeared on ITV1’s Loose Women to talk about our campaign. Following Amanda’s appearance on Loose Women alone over 3,000 people logged onto Patrick’s blogsite.

Patrick was interviewed by presenter Matthew Banister on BBC World Service. Matthew lost his father to MND and his mum Olga is heavily involved with the Sheffield Branch.

However, it is not just about raising awareness and funds. Many people are finding the message of optimism a really positive one in the face of such a devastating disease. One woman who lost her husband to MND said that it is helping her to deal with her own grief; another said that after losing their mum they are aspiring to become an

Our advert features on the side of a lorry


Spreading our message of incurable optimismThe public can now vote for who Patrick paints next on his Facebook page

Incurable optimism – in numbers

• Over 28,000 hits to www.patricktheoptimist.org

• 12,000 hits on You Tube – Patrick the optimist film

• 765 followers on Twitter

• 1,800 fans on Facebook

• 10 million people reached through media coverage

• 80 posters across the London underground and 50 posters on national rail network (donated advert space)

• £80k worth of free adverts in The Daily Mail and Mail on Sunday so far.

Portrait No 11 My Parents My parents are the biggest optimists in my life, after Kathy. Right from my diagnosis they have been positive, supporting me in all my crazy schemes, and even suggesting a few new ones.

Portrait No 12 My Parents As there are two of them they count as two portraits!

Portrait No 10 Prof Mark Cato Mark is a strong and charismatic man. Diagnosed with MND at the age of 71 he set up a hugely successful blog to help people through terminal illness with his own brand of optimistic humour.

Portrait No 9 Roy RedfordRoy is an amazing man. He has run the last 19 London marathons for the Association. He is 81 years old.

Portrait No 13 Vinita PiyaratnaVinita has MND and lives in Sri Lanka, she is the first person to be painted from nominations on this website. Vinita dances in her wheelchair, so I painted her dancing. Beautiful.

incurable optimist like Patrick. Not long after Patrick posted a film

about his PEG operation, a lady posted a comment to say that her husband wasn’t keen on having one himself until he saw Patrick go through his. It is reading messages like this, and the many messages that have been left on Patrick’s blog site that demonstrate the real human impact of this campaign.

Our first international exhibition of Patrick’s portraits The public can now vote for who Patrick paints next on his Facebook page www.facebook.com/patricktheoptimist

The winner of the first public vote was Vinita Piyaratna, a lady from Sri Lanka who has MND. Vinita’s daughter Menaka suggested her after coming across Patrick’s Facebook page. Patrick was struck by Menaka’s description of her mum, dancing in her wheelchair. You can log onto www.patricktheoptimist.org to see Patrick’s portrait of Vinita dancing under her quote ‘there is good in everyone’.

An arts centre in Sri Lanka, The

Warehouse Project, was so struck with Vinita’s portrait and our incurable optimism that they are planning to hold an exhibition in October of all Patrick’s portraits so far.

Wouldn’t it be great if exhibitions of Patrick’s Portraits went up around the country? Exhibitions could be in galleries, but also in community centres, shops, cafés or even homes.

If you would like to hold your own exhibition of Patrick’s portraits to demonstrate our incurable optimism and help raise awareness of MND, please contact [email protected]

Dr Brian Dickie wins the public voteThe second public vote has been won by Dr Brian Dickie, our director of research development. Brian has

come in at portrait number 14. After Brian won the public vote Patrick said: “He is an optimist, and a good man, and will not stop until he’s ended MND. In him is invested our hopes of a cure.”

You can keep up to date with Patrick’s mission at www.patricktheoptimist.orgwww.facebook.com/patricktheoptimist If you would like to order business cards or posters to help spread our message of incurable optimism please contact [email protected]

Also, don’t forget to nominate an incurable optimist you know. There are some amazing people out there – let’s celebrate them.

research news


Under the supervision of three leading researchers at the University of Oxford: Dr Richard Wade-Martins, Dr Kevin Talbot and Dr Olaf Ansorge; Ruxandra Mutihac, a recent graduate from the prestigious Oxford MSc Neuroscience

Programme, started work this summer on this innovative three-year research project.

The project is taking advantage of two major recent scientific advances: the discovery of the TDP-43 gene as a cause of MND; and the development of new stem cell technology to create induced pluripotent stem cells. This is the Association’s second stem cell research project.

The project will create motor neurones, derived from the skin cells of MND patients with the sporadic (non-hereditary) form of MND. The skin cells will be ‘reprogrammed’ to generate induced pluripotent stem cells (iPS cells) which are very similar to stem cells derived from human embryos. The iPS cells will then be modified to turn into motor neurones.

This project complements the first

The fellowship programme, jointly funded by the Medical Research Council (MRC) and the Association, aims to attract and develop outstanding young clinicians in MND research in order to create future scientific leaders in the field. Good researchers are fundamental to good research and developing the MND research workforce is a key element of the Association’s research strategy.

Dr Fratta will conduct his PhD research in the lab of Prof Elizabeth Fisher, one of the world’s leading mouse geneticists. He will be developing a new mouse model that contains only one copy of the mutant SOD1 gene, a genetic mistake that causes MND, which will closely mimic the human disease. Dr Fratta will then compare and contrast changes found

in the new mouse model to those found in people living with a rare inherited form of MND caused by exactly the same genetic mistake.

Previous mouse models have allowed the research community to make important advances in understanding MND, however as these models can contain many more copies of the damaged gene than naturally occurs in the

human form of the disease, scientists are aware that there is room for improvement.

“The existing SOD1 mouse models have revolutionised MND research but they are still a little like taking a sledgehammer to crack a nut,” explains Dr Brian Dickie, director of research development at the MND Association.

“The advantage of this new model is that it is essentially a ‘naturally occurring’ mouse version of SOD1 MND with ‘naturally occurring’ cellular levels of the SOD1 protein - exactly as you would see in human families with the SOD1 mutation.”

Prof Fisher says: “The Lady Edith Wolfson Fellowship gives us a unique source of funding to train an exceptionally talented individual and hopefully create a life-long professional interest in the disease.”

The fellowships are an exciting development in MND research as they are allowing us to attract the best young clinicians, help develop their scientific expertise and place them at the heart of translating knowledge from the lab to the MND clinic.

Association-funded iPS cell initiative, being led by Prof Siddharthan Chandran at the University of Edinburgh. The Edinburgh team will be examining cells obtained from MND patients with TDP-43 gene mutations. The Oxford approach has the advantage that it can be used to create motor neurones with a specific genetic cause of MND, even when there may not be a patient with that precise form of MND available to donate a skin sample.

The University of Oxford is an international leader in stem cell research in neurodegenerative diseases and is one of only a handful of institutes in the world with the expertise and technology on-hand to attempt this ambitious study.

Dr Brian Dickie, director of research development at the MND Association, says: “This project ticks all the boxes for a PhD studentship project: cutting-edge research in a world-class research and training environment.”

Dr Kevin Talbot, one of those supervising the project said: “By the end of this study we hope to have developed the tools to allow us for the first time to work directly with the cells that are the key to unlocking the cause of MND.”

Fellowship funds young clinician in MND researchThe latest Lady Edith Wolfson Clinical Research Fellowship - the fourth since the scheme was initiated in 2007 - has been awarded to Dr Pietro Fratta, based at the Institute of Neurology, University College London.

Studentship draws on scientific advances in stem cell researchWe have awarded a new PhD studentship grant to a research team based at the University of Oxford.

This is the Association’s second stem cell research project.

Good researchers are fundamental to good research…

Dr Pietro Fratta

Dr Kevin Talbot

new chair


Meet Mark, our new chair

We know you were MP for South Derbyshire. Tell us about your parliamentary career and your achievements during that time.I spent most of my parliamentary time sitting on select committees – the scrutiny function of parliament. I served through the foot and mouth outbreak on the Agriculture committee and through the Northern Rock and wider banking crisis on the Treasury committee. I also piloted a private members’ bill through parliament covering technical issues relating to co-operatives and community benefit societies. Of course my area saw huge change through the 13 years in which I played a part, one hopes positively!

What are your aspirations for the organisation during your term as chair? The Association is a highly-successful charity which punches way above its weight through the power of its message, the strength of its people and the construction of partnerships. In today’s challenging economic environment we will need to raise our standards still further if we are to increase the quality and quantity of both research and care required to take us further toward a world free of MND. I am sure that I can contribute to our meeting that challenge.

What was your motivation for getting involved with the Association? I met a constituent with MND who had written to me about wasteful practices by the Benefits Agency – travelling from Birmingham to Derby and back to check his entitlement to Disability Living Allowance when any knowledge of the disease would have provided the answers to most of the questions asked. I pursued the issues raised in parliament and the MND Association contacted me to ask me to first set up a meeting with the minister on this issue and then establish an all-party group to widen knowledge of the disease among MPs and peers.

You were the founding chair of the All-Party Parliamentary Group for MND. Share some of your successes. We have steadily increased the number of parliamentarians with some knowledge of what MND is and gave a platform to those with MND to talk to MPs. We had useful meetings with ministers on establishing national frameworks for neurological conditions. Our pressure on the Government did produce progress on National Institute for Health and Clinical Excellence (NICE) advice on access to Non invasive ventilation (NIV). See pages 8/9.

What personal experience of MND do you have? As an MP I had constituents contact me with concerns about service responses to those with MND. One of my strongest supporters in my constituency, who worked tirelessly to get me elected and re-elected, died of the disease.

We’ve been hearing about the Government’s White Paper. Please can you explain what this is? The Government intends to transfer the commissioning of local health services to consortia of GPs and the co-ordination of local health communities to local authorities. These changes come into effect in 2012-13.

What does the White Paper mean for those who are affected by MND? Whilst GPs have been involved in

commissioning before, this change will make them the key decision-makers and directly accountable for the costs of those decisions. Local authorities previously held a scrutiny function. They become more influential in the local health economy. Both changes will mean that relationships and communication must realign. We have not always been effective in influencing primary care trusts – the current commissioning arrangement. We have an opportunity to start afresh.

How close do you think we are to knowing the cause of MND and discovering a cure? We have made rapid recent progress in understanding the genetic pieces which seem to have links to MND. There are many more links to find, including perhaps, environmental and lifestyle relationships. As researchers assemble this complex picture promising lines of research on potential cures will emerge.

What does your role as chair of NHS Derby City involve? NHS Derby City purchases over £400 million of health services on behalf of Derby residents – these services cover the full range of functions from public health, services delivered by GPs through to acute, specialist services. I chair the board of the Trust.

What role do you think our membership has to play in the success of the Association? We are vital! We are the communication channels through which our knowledge is assembled. We are the people who raise a substantial amount of the funds required. We deliver much of the support to those with MND. We provide the core motivation of the charity.

We know your role as chair is a voluntary one – what messages of support do you have for our dedicated army of volunteers? I want to listen, learn and help. Our volunteers are at the core of the Association. Without their motivation and purpose it is not possible to imagine a successful charity.

What do you regard as the biggest challenge facing the MND Association today? Maintaining the pace and momentum we have already developed through tough economic circumstances and a radically-altered health and care economy.

Mark Todd, our new chair, explains his motivation for volunteering with the Association, his aspirations for the future and the vital role our membership has to play.


annual conference

Presenting our petition to 10 Downing Street

Alan Graham handed over the baton as chairman of the Board of Trustees to Mark Todd at our 25th AGM.

Alan’s term of office came to an end after six years as chairman and 13 years on the Board of Trustees. He will continue to be involved with the Association, particularly in his role as branch treasurer.

Alan told the AGM: “I have Ied us at many AGMs in reflecting on the year just gone, in particular its successes and achievements. This will be the last time I undertake this role. I am therefore particularly pleased to report

that, over the past 12 months, we have made significant progress in achieving our plans for the Association, both in the short and long term.

“Despite the difficult economic circumstances in which we all currently find ourselves, you will be comforted and pleased to know that our fundraising income has held up, and that our reserves position is still strong.“

He added: “I look back on my term with satisfaction, pride and gratitude. I have felt privileged to have had the opportunity to meet and work

Farewell to Alan

“...over the past 12 months, we have made significant progress in achieving our plans for the Association, both in the short and long term.”

Our 25th Annual General Meeting (AGM) and Annual Conference was held on 11 September.

with so many of our volunteers, the Association’s directors and staff, and trustees.“

Addressing our AGM, new chair Mark Todd spoke of the importance of partnership working and knowledge sharing with other charities, care

Retiring chairman Alan Graham with vice chair Alan Horwell and new chair Mark Todd


Finally, Kirstine Knox and trustee Jean Waters encouraged those present to get involved in our campaigning work to ensure our voice is heard.

providers, researchers and other agencies.

Mark called for even closer working between national office and our branch and group network and described the White Paper on the future of the NHS as an ‘opportunity not a threat’ and a time to influence change.

The formalities of the AGM were followed by a presentation by Prof Nigel Leigh who reflected on his career in MND care and research and looked to future challenges.

Delegates were then invited to attend one of four workshops: research; fundraising; care; and volunteering.

Finally, our Chief Executive Kirstine Knox and trustee Jean Waters encouraged those present to get involved in our campaigning work to ensure our voice is heard. Mike Cronogue, from Walsall and Sandwell Group and Sheila Johnson, from Derbyshire Branch gave very motivating accounts of how they have got involved in campaigning locally.

Board of TrusteesMEMBERS were balloted on their choice of up to four candidates from a list of eight.The results were (in alphabetical order):Anne Bulford Cynthia Hopkins (re-elected)Dr Christina Lloyd (re-elected)Prof Brian Wilson (re-elected)

Meet our new chair, Mark Todd, in our special feature on page 19.


A year later, Mike is one of an increasing number of volunteers who come to support the Association without any direct personal experience of MND.

Mike explains: “When I was signing on, they asked if I’d ever considered volunteering. To be honest, I hadn’t but they directed me to a website. I scrolled through the information and found that the MND Association was looking for a branch secretary in the Midlands.”

With 20 years’ experience in a variety of managerial roles, Mike felt he might have something to offer. The website: www.do-it.org pointed him

in the right direction and he met up with our volunteering development co-ordinator (VDC) Angela Lea.

“The Association attracted me because I had no direct knowledge or experience of the disease. I could have

Volunteering – do-it!Getting involved with the MND Association hadn’t crossed Mike Cronogue’s mind until he unexpectedly found himself out of work.

“When I was signing on, they asked if I’d ever considered volunteering. To be honest, I hadn’t but they directed me to a website...”

News in brief

Branch marks 25 years and £1.25millionAround 140 members and supporters of the East Surrey Branch attended a very special black-tie dinner at Denbies Wine Estate in Dorking to commemorate the 25th anniversary of the foundation of the branch. During the event, branch chair Simon Edmands announced that, over the past 25 years, the branch had raised just over £1.25 million to support local people living with MND, including an anonymous donation at the event itself of £10,000!

At the dinner, branch founder members Michele and Terry Justice and Colin de’Ath were given commemorative silver photo frames. Chris White, General Manager of Denbies in Dorking was presented with a plaque honouring the company’s invaluable support to the branch over the past 15 years.

Pictured at the event are former branch chairs. Back (l to r): Hugh Cannon, Stephen Blaney, John Sahl, Rob Epps; Front (l to r): Andrew Morris, Beryl Daniel, Simon Edmands.

Long serviceVolunteers from the Manchester and District Branch were recently presented with long service awards to recognise their contribution to the branch and their support to people living with MND locally.

The volunteers have together totalled over 170 years in a variety of roles, with many of the volunteers carrying out more than one role. Karen Hickmore, volunteering development co-ordinator (VDC), said: “This is an outstanding achievement by a dedicated group of volunteers who have helped the Manchester and District Branch achieve a wonderful level of support for people living with MND.”

getting involved

Mike Cronogue attending the AGM


gone to Diabetes UK or the Stroke Association because my family has been affected by both conditions but that felt too close to home. I wanted something different.

“When I learned about the disease and its devastating impact, I instantly knew I wanted to do whatever I could, however small, to help raise awareness and support people affected.”

Mike, who now works as a freelance business writer, finds it easy to fit his MND commitments around his working life.

“In the old days when I was working horrendously long days, it wouldn’t have been possible, but now I block off time for my MND role. Depending on the time of year, I would say I spend three to four hours a week on it. I find it perfectly manageable – it fits into my life with no problems at all.”

As it covers a large area, the West Midlands Branch is now divided into three groups to ensure a more personal approach to people affected by MND and to reduce travelling time to meetings and events. Mike is now group correspondent and also edits their quarterly newsletter which is available both in hard copy and online. Last year he also organised the Christmas meal.

Mike also ensures that local MPs are kept informed about MND issues and he attended the parliamentary reception at Westminster when the Association presented its petition calling for a National Strategy on MND.

“That was a very humbling experience, to feel that we were representing the needs of people affected by MND,” says Mike. “I always try to keep that thought uppermost – that however small my contribution it goes some way to helping families affected.

“Raising awareness is also important. I went for an interview a while back and talked a lot about MND. I may not have got the job, but I like to think two more people are now aware of the disease and what needs to be done to fight it.”

Soon after getting involved, Mike welcomed the opportunity to visit national office as a participant at the annual Induction Day.

“For me, that was terrifically useful. I got to meet most of the staff and put names to faces. Seeing what goes on at national office really makes you realise how important fighting this disease really is. It also helps you understand how the work of

volunteers dovetails with the work of the staff.”

Angela said it has been very rewarding working with Mike.

“In the short time he has been volunteering with the Association, he has made a huge difference locally. He has enthusiastically engaged at a regional and national level.

“He joined us from ‘do-it’ and Mike is a ‘do it’ volunteer. If he says he’ll do it, he does it!”

A year in to his involvement, Mike has enjoyed getting to know other volunteers and met many people affected by the disease.

“You never forget why you are doing this. It is both humbling and inspiring. Obviously there are some sad moments, when you hear that someone you met has died from the disease. But that only serves to galvanise you into keeping going, doing your own little bit to support people.

“I have to say that this sort of volunteering had never really occurred to me until that point. In the past I have worked with church

“That was a very humbling experience, to feel that we were representing the needs of people affected by MND,”

Did you know?

Our Association visitors:• buildandsustainsupportiverelationshipswithpeoplewithMNDaswell

as their families and carers• areprovidedwithfulltraining,supportfromanexperiencedlocalteam,

and are reimbursed all out of pocket expenses.

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

For more information, contact the volunteering team, on 0845 6044150,

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

www.do-it.orgThe volunteering opportunity website, www.do-it.org is used by 21,000 registered charities, which allows potential volunteers to search for opportunities by area of interest, activity, location and availability.

The Association currently has 82 volunteering opportunities advertised on the site and over 50 volunteers have been successfully recruited in the last 12 months through this route. We also advertise opportunities on other websites including www.charityjob.co.uk.

groups and political groups but this is different. It is good to be able to use some of my professional skills in a different arena,” he adds.

If you are interested in finding out more about how you could get involved and the range of opportunities available please contact the volunteering team on 0845 6044 150 or email [email protected]

changing lives


The difference you makeTHE amazing achievements of our wonderful fundraisers are regularly celebrated in Thumb Print and your generosity never ceases to amaze us.

But have you ever wondered what happens to the money you raise and how it really makes a difference to those whose lives are affected by MND?

Did you know?£50 pays for laboratory equipment for a day’s research. MND researcher, Dr Emily Goodall, says: “One of the hardest things about my dad’s diagnosis of MND was that we didn’t know the cause. I got involved in research because it asks the question – why do people get the disease? Answering this is fundamentally important to the quest for more effective treatments and finding a cure.”

First time fundraiser When Lottie Daughtrey discovered the lack of awareness of MND in her area she decided to do something about it.

With husband John having been diagnosed with MND just 14 months earlier, the couple set about organising their first event to raise funds and awareness for the Association.

The two-hour garden tea party included a raffle, home-made cakes, stalls and refreshments and was a huge success. Lottie is already planning her second fundraiser – an evening of entertainment with comedy and music this month.

She said: “There’s so much research to be done and so many people needing equipment because of the affects of the disease, I just felt I’d like to do something to help them out.”

Lottie says she also benefits being a member of the Association, adding: “Reading Thumb Print, with all the letters, tips and views of others with MND in is really useful.”

The garden party was a staggering success and, thanks to the support of the guests who attended, more than £1,000 was raised in just two hours.

Long-term commitmentSimon Selkirk set himself an incredible long-term fundraising challenge, in fact it will take 25 years to complete!

The 37-year-old has committed to run 25 Great North Runs in a row, which means he will be aged 56 when he completes the challenge - the same age his father Stuart was when he lost his battle with MND.

Simon completed his seventh Great North Run in September, just a month after the 10th anniversary of his father’s death.

He said: “For me there is no better way to raise both awareness of MND and money for the MND Association than running. The Great North Run is a fantastic challenge and an amazing day out and to run it for such a worthwhile cause makes the effort all the more rewarding.”

The next generation of the Selkirk family is keen to continue supporting the Association. Little Daisy is already following in her father’s fundraising footsteps and has just completed her first Mini Great North Run at the

Thanks to your efforts in 2009/10 we were able to provide £790,758 of funding to 1,231 people living with MND and fund 39 research projects. Our current portfolio of research projects totals over £7.5million.

Quite simply none of this would

have been possible without the continued commitment and generosity of our 22,000 donors and fundraisers.

Here we spotlight just a few examples of your varied fundraising efforts and talk to some of those whose lives you have helped to changed.


Did you know?£1,000: Buys a riser recliner armchair to help maintain a level of mobility for those like Elaine Luckman, who can no longer stand unaided.

She says: “The Association has supported me by giving me a riser-recliner chair. It’s such a simple thing but without one I couldn’t get up out of a chair. When I was told by the Association that I could have one, to me it was like Christmas all over again. I’ve been so used to people saying ‘No, we can’t help you’ or ‘sorry but you’ve got to wait’ that to get my chair so easily and quickly was just fantastic.”

Sue Stone has turned her running hobby into a fabulous fundraising opportunity – thanks to a chance meeting at work.

Sue first came across MND while employed as a clinical co-ordinator at Oakhave Hospice in Lymington, when she met a patient called Tony Riggs.

It turned out that they shared mutual friends at the running club Sue belonged to and wanting to support Tony and others living with MND she committed to raising funds and awareness for the Association.

Sadly Tony has now passed away but Sue’s passion to help others like him remains and she has continued to contribute to the Tony Riggs Tribute Fund.

Her first fundraising event was Run China in 2004, in 2006 she followed it with Run Cuba and in 2008 took part in Run Mexico – all 100km challenges. And if that wasn’t enough, Sue was one of the first to sign up for Run Morocco – due to take place in November this year.

She said: “Tony encouraged me to sign up for my first running challenge in China in 2004. I was being quite negative about my ability to undertake such an event, but he made me realise that I could combine something that I enjoy, running, with raising money for the MND Association, and that is great.

“Tony said that if you go through life saying ‘I can’t’ you would never achieve anything. If you are thinking of signing up for a challenge

tender age of five.Since 2004 Simon has raised more

than £8,200 for the Association and has also set up the Stuart Selkirk Tribute Fund in his father’s memory.

Did you know? £2,500 - £3,000: Buys a Lightwriter to give a voice back to people who have lost their speech, like Brian Wells.

He says: “Over time MND robbed me of the ability to walk and talk. I still try to live life to the full. The MND Association has helped by providing a Lightwriter to help me communicate and a special chair to help me rest after a day with my grandchildren.”

and are not sure if you are able to do it, just believe in yourself and think positively that you are able to do it, and you will achieve your goal.”

Since that chance meeting with Tony in 2004 Sue’s three challenges have seen her raise more than £9,500 for the Association and she’s also a fully trained Association visitor (AV) and chair of the Southampton Branch.

Running hobby is a money spinner

walk to d’feet


78 walks, 35 counties, 2,000 miles!

To date, we have 78 walks in 35 different counties covering approximately 1,918 miles and involving an incredible estimated 5,285 walkers!

Thank you to everyone who organised or took part in a walk this year, you have each taken valuable steps to help raise awareness and funds for those with MND. Thank you also to those who have yet to hold your walk for us as with Walk to d’feet* MND being an ‘all year round’ event – there’s still time left in 2010 to get a walk in!

Here is a selection of our 2010 walk highlights. Sadly we’re unable to include every walk but we thank every one of you for your support.

January: Melanie Speakman and her team wrapped up warm to start the year off with a walk in the stunning Lake District.

February: Mary Serjeant’s team ‘The Thomas Family’ walked 14 miles around

Lake Vyrnwy in Wales raising over £4,000.

March: Chris Pennington and friend Ciaran Gilsenan walked a tremendous 150 miles over seven days across the Lake District’s Mountain Range for the South Lancashire Branch and raised £1,365.

April: The Yorkshire Dales Branch held its first ever walk at Swinsty and Fewston Reservoirs attracting 305 walkers (and a few dogs too), raising over £10,000. It’s not surprising to hear they have already booked a walk in for April 2011.

May: Coast to coast walks; Roger and Jill Day trekked a staggering 192 miles for the North Beds Branch raising £1,935.50. A week later, Iain Melvin and his dog Herbert also completed 192 miles for the Leicestershire and Rutland Branch raising an incredible £15,221.50!

June: Northampton Branch held a walk in the stunning ancestral grounds of the

Spencer family at Althorp estate. Some 66 walkers mingled with those attending the annual Literary Festival the same day raising over £3,500. Joss Ackland very kindly visited our stand and signed copies of his late wife Rosemary’s book; ‘My Better Half and Me’. Cambridgeshire Branch’s gruelling 40 mile ‘Lyke Wake Walk’ in the North Yorkshire Moors saw 13 hardy trekkers ascending 4,000ft in total, raising over £5,000. Starting at a bright and breezy 4.30am, walkers finished at about 8pm!

It’s been another wonderful year for our national event, Walk to d’feet* MND with the whole family and local communities holding walks up and down the country in all weather conditions and at any time, any place and anywhere!

“... you have each taken valuable steps to help raise awareness and funds for those with MND”



Wrap up warm and enjoy the crisp, fresh air!

July: Rosie Horsfield and her team of 20 – ‘Dad’s Army’ – walked in Brighouse, West Yorkshire as a wonderful tribute on what would have been her dad’s 80th birthday.

August: Charlotte Spawforth and her team ‘Granville’s Groupies’ walked seven miles from Altofts to Newmillderam, West Yorks; her fourth year supporting the event.

September: Nevil Hagon was due to walk 50 miles of the South Downs Way in memory of his father.

October: Heather Kneale and her team were due to walk ‘10 miles on 10.10.10’ in Woodford Green, Essex in support of the East London Development Group.

November: no walks registered…as yet! Anyone fancy holding a ‘Guy Fawkes’ themed walk?

December: Anne Lipscomb and her team, the ‘North Essex Group’ are holding a Christmas-themed walk in Dedham, Essex. Here’s to your winter wonderland walk ahead. Wrap up warm and enjoy the crisp, fresh air!

Whether a leisurely stroll in the countryside, brisk walk through the city streets or a more challenging hike up the peaks – the awareness and funds your walks raise ensure that ‘together, you’re each taking steps to d’feet MND’.

Please pass the ‘Walk to d’feet* MND’ word around to help us to ensure we continue to build on the success of these sponsored walks up and down the country and encourage others to organise a walk or take part in their area.

For more information on Walk to d’feet* MND and for walks in your area, visit www.mndassociation.org/walktodfeet or contact Trudi Willis on 01604 611834 or [email protected]

Great North RunOver 250 runners flew the flag for the MND Association when they pounded the streets of Newcastle in the Great North Run.

They were among 54,000 runners who took on the annual 13-mile challenge in September.

Heavy rain failed to dampen the spirits of our entrants whose amazing efforts are set to boost our coffers by more than £130,000.

Rachel Cropper, who is living with MND, was pushed around the course but left her wheelchair and walked the final mile thanks to the support of her family and friends.

Ten…is the magic number!July marked the tenth anniversary of one of Europe’s most popular 10km road races – the Asics British 10k London Run.

Once again we were thrilled to be part of the action – sharing the capital city with over 25,000 runners; raising thousands of pounds for fabulous causes.

Some of the city’s greatest sights became the backdrop for this ever popular run – enabling runners of all ages and experience to capture the moment.

With over 50 runners donning our MND Association team colours, we were very proud to welcome them home at Jubilee Gardens for our post race ‘picnic in the park’.

Surviving the heat of the midday sun while sacrificing Formula One and the World Cup Final – they were most definitely our champions of the day.

Our congratulations go to all those who took part, and heartfelt thanks for their valiant efforts.

Already booking for next year –11 July 2011. To secure your place now contact Esther Fifield on 01604 611881.


Not all ran in traditional shorts and running vest. Brothers Craig and Andrew Thompson donned Flintstones outfits complete with a cardboard car, in memory of their mum Jan who died from MND.

And Grimsby firefighters Steve Critten and Andy Dixon attempted to make a new world record by completing the run in their full uniform – including breathing apparatus, tunic and firefighters’ boots!

When Steve found the heat too much Andy went on ahead and broke the world record time, crossing the finishing line in 2hrs 35mins - however

he is still waiting to hear if it will be verified by the Guiness Book of Records.

Our congratulations and thanks to all those who took part.

Rachel Cropper walks the final mile

fundraising


A star-studded array of international musicians played at a very special concert in Cambridge, raising awareness of MND and an incredible £30,000 for the Association.

Nigel Brown, High Sheriff of Cambridge, organised the June event to honour his friend Jeremy Marshall, who died from MND in December 2008.

Nigel is the founder of the Stradivari Trust, which purchases valuable antique instruments to make available to promising young British musicians. Nigel and his instrument manager Emily persuaded the musicians the Trust has helped to perform in the extraordinary concert.

The committee found sponsors, sold tickets and persuaded printers, designers, stage managers and many others to give their services free.

The evening began with a wonderful champagne and canapé reception in the beautiful Long Gallery in the President’s Lodge at Queen’s College, very kindly hosted by Lord and Lady Eatwell.

Every seat in the concert hall was full and the atmosphere was electric as the first musician began.

After the interval, lots were auctioned to the enthusiastic audience, including a violin lesson with Matthew Trusler, a private recital by Jamie Walton and a Can’t Sing workshop with Suzi Digby (Lady Eatwell).

After the concert, a superb supper culminated with desserts provided by Hans Schweitzer from Cotto, holder of three Michelin stars!

Star-studded musical extravaganza

SharegiftLast autumn’s edition of Thumb Print included a leaflet about ShareGift, a registered charity which specialises in putting unwanted small holdings of shares to good use. Since 2001 we had received nearly £35,000 thanks to the supporters of the scheme.

In March we were delighted to receive a further £20,000 from ShareGift, our biggest single donation through the scheme. Thank you to everyone who supported us this way and for spreading the word. Small shares really do count!

If you would like to know more contact Tess Moore, on 01604 611868, [email protected]

Over the past six months they have embraced us as a charity and partner and their fundraising efforts have gone from strength to strength.

From wacky to wonderful, teams and individuals have walked on fire, performed songs from the West End, jumped out of planes and walked their legs off. The list of activities is endless.

To top off the first six months we have received over £60,000 which has enabled us to purchase 20 new Lightwriters to support people living with MND within the Midlands Co-operative trading area.

Awareness is just as important as

In June, 10 brave souls lead by Paul Gillmon set of on their adventure to conquer the UK 3 Peaks Challenge. The team had been busy raising funds for the challenge and reached over £11,000 - more than double their initial target. They all arrived safely at the foot of Snowdon in great spirits and very proud of their achievements.

The IMG Interns also showed their support by organising the annual charity rounders competition in August, splitting the funds from the silent auction and raffle between their charity of the year, the MS Society, and

Wacky to wonderfulStaff at Midlands Co-operative Society are continuing to support the Association in true style.

fundraising and Midlands Co-operative staff are as keen to help with awareness raising as they are with fundraising. They have vowed to support our Incurable Optimism campaign every step of the way with internal magazine publications, posters and regular updates along with external coverage in their members’ magazine reaching over 80,000 people.

The team had been busy raising funds for the challenge and reached over £11,000...

Fundraising peakA group of IMG Golf employees decided to show their support to the Association by taking on possibly the hardest challenge in the UK.

the MND Association after losing a colleague to MND.

Over 100 employees enjoyed a great evening of fun and just a little

sportsmanship towards the final! The raffle and auction raised over £3,000, twice as much as previous years.


She set up the Alan Miller Tribute Fund in May 2006 and, four years on, has helped raise over £15,000 in his memory.

“It just seemed a brilliant idea,” says Debbie, who used to see her uncle Alan every day. Her father John and Alan ran a beef and arable farm together and Debbie lived nearby.

“Alan was a bachelor so when he became ill I helped care for him. I saw him every day so was very aware of how the disease affected him,” she says. “Right from the outset I knew I wanted to do a big fundraising event in memory of Alan. We are a very close-knit family and a close community. We live in the sort of area where everyone knows everyone so it seemed a logical step to do something to remember Alan.

“At the time, someone else in the area had also lost a friend to MND and another man we knew had just been diagnosed, so raising funds for the Association seemed the logical step.

“We raised a little bit at Alan’s funeral then I spent some time trying to work out what sort of fundraiser would be best.”

Debbie, who works for a charity providing environmental and wildlife conservation advice to farmers, settled on the idea of an Auction of Promises. The event, supported by friends and family in the Hampshire valley where Debbie lives, raised £11,000.

“I’d never organised anything like this in my life but I was determined that it would be a success. It was amazing and very humbling because so many people came, and so many others offered over 70 promises for the auction.”

Now Debbie hopes to organise a

Conquering the coalsBrave MND fundraisers have once again conquered the coals - raising almost £7,000 in sponsorship.

Twenty two fundraisers walked the walk at Northants County Cricket Club in March following a one-hour training session giving them the confidence and the skills to walk across the coals unharmed.

Participants travelled from far and wide to take part in this unusual event with one fire walker coming all the way from the Isle of Wight!

Vicki Robertson took part in the event with her father Peter. She said she found the experience ‘absolutely amazing!’ In fact she walked several times.

Christine Boyer, 68, fulfilled a burning ambition when she took on the challenge in memory of her husband Knight.

“I can’t run marathons but, having seen a programme on TV several years ago about fire walking, I have always thought that would be quite a challenge,” she said.

“When I read in Thumb Print about the proposed fire walk my reaction was immediate. This is my marathon and I’m doing this for Knight.”

After the challenge Christine felt exhilarated: As I stepped on to the coals the first time (of six) my first thought was that it didn’t feel hot, as I imagined it would be and there was no pain. Was that the training? I can’t say. I only know that it is the most amazing feeling to have completed the challenge. My grandchildren think I am ‘awesome’!”

Well done and thank you to all our fire walkers for taking on this challenge, facilitated by fire walking experts Survivorbility, and raising funds and awareness.

If you’d like to take on the hottest event in our fundraising calendar on Saturday 20 November at the University of Northampton, Park Campus, contact Taryn Moore, on 01604 611691, [email protected].

Sustainable fundraisingColleagues at Alumet raised just short of £800 from their sustainability day in June from a tombola, books stalls and refreshments table. David Bellamy was among the guests.

The staff at Alumet also raised funds with a charity bowling night and personal sporting events, with one member of staff successfully cycling from Lands End to John O Groats.

Activities planned for later in the year including a charity football match, softball game, pub quiz and a cake sale.

Debbie’s lasting tributeWhen her much-loved uncle died from MND, Debbie Miller decided that setting up a tribute fund would be a good way of both remembering him and raising funds for the Association.

big event every three or four years, as well as undertaking smaller, more personal fundraising activities.

“Alan knew there wouldn’t be a cure for MND in his lifetime and we were shocked by the awfulness of the disease. He had every faith that something would develop for people diagnosed in the future. He was very keen to see the Association supported. That spurred me on to fundraise and formalising it with a tribute fund seemed the perfect solution.”

Among other events, Debbie organised a sponsored birdwatch and this summer she completed the West Highland Way from Glasgow to Fortwilliam to raise additional funds. When she got married, the wedding list also included an option for people to donate to the tribute fund instead of buying a present.

“If anyone is thinking of setting up a tribute fund, I would advise them to go for it. In the months after Alan’s death it helped focus things for us as a family and it helped the grieving process, knowing that our small amount of support could help others living with MND.”

“I’d never organised anything like this in my life but I was determined that it would be a success...”

down your way


Tractor Girls 2010. Thirteen days, a convoy of vintage tractors and the length of the British Isles. That’s what the Tractor Girls achieved, helping to raise thousands for the Association.

The MND Association was chosen as one of three charities to benefit in memory of Jenny Cole’s father’s friend John Hanlon, who died from MND. Since deciding to support us, one of Jenny’s best friend’s (and fellow Tractor Girl) mother has been diagnosed with the disease. The girls have been fundraising

Sarah’s kilomathon. Nurse Sarah Hill ran a kilomathon in memory of her mum Carol Biggs, who died from MND in 2008. Sarah, 27, was pleased that she completed the Mother’s Day event – 26.2 kilometres from Nottingham to Derby. It is seen as a slightly more manageable version of a long run, compared to the usual 26.2 miles for a marathon, but still involves determination and months of arduous training.

“Mum would have been proud of me,” said Sarah, from Boston in Lincolnshire.

Running and diving. When her dad John was diagnosed with MND Lorna Carruthers decided to do something dramatic in his honour. Along with her sister Emma and brother-in-law Craig she completed a 14,000 foot skydive and raised £1,700.

Sadly, John died earlier this year but Lorna was determined to carry on raising funds and took part in the Great Manchester Run, bringing in another £166 in sponsor money.

Fundraising folk. Folk group Rapsquillion treated the people of Powys and Shropshire to a session of summery sounds – raising over £700 for the Association.

extremely hard for the Association and hope to have raised £35,000.

Jenny says: “This is a unique event and 100% of donations go to our chosen charities.”

The Tractor Girls were Jenny Coles, Claire Moore, Jaime Hawkins, Hannah Mayhew, Alexandra Goddard, Sophie Jeans, Catherine Farwell, Laura Mathers, Helen Corrigan, Carol Moore, Louise Moore and Eilidh Grieves.

To read more about the Tractor Girls and their journey check out their blog www.tg.2010.co.uk

Artistic talents. Three people living with MND have seen their works of art on display, thanks to Association visitor Jean Longville.

She came up with the idea and organised the exhibition at Kidderminster Library. The event which attracted lots of visitors, featured the work of Jacky Smith, Pauline Taylor and Richard Jones.

The exhibition was opened by Prof Sir George Castledine, president of the Worcestershire Branch and included an impromptu contribution by members of local choir The Valentines. Pauline Taylor is a member and they came out in force to support her and admire the artwork.

Members of the Rapsquillion Folk Group. Left to right: Keith Thomas, Kay Smillie, Jenny Wright, Trevor Hedges, Sue Lawrence, Lizzy Woodcock, Jac Wills.


Motorbiking. The M25 is a stretch of road most of us would rather avoid but a group of bikers decided to ride the whole circuit for MND.

The awareness raising posse of 24, sporting bright MND Association tabards, set off from three different junctions to complete a full 117-mile circuit as part of an MND Circle of Life event.

The event was organised by Liam Dwyer from Horley in Surrey. He was a keen biker for 20 years before being diagnosed with MND in 2005.

“I was really pleased with how well the event went,” said Liam. “For me one of the best things was being able to take part myself by riding pillion on the back of a friend’s trike. That was something I never thought I would be able to do again.”

Golfing success. It’s turning out to be an annual event! For the second year running, Malaga accountants Spence Clarke & Co teamed up with Roger Lomas and Derek Williamson to organise a charity golf day.

Twenty two teams braved the searing Spanish sun to take part, raising over 8,670 euros which will be used for research. Already plans for a 2011 event are underway.Tee-rific!

Classic car support. The Gwent MG Owners Club held a Classic Vehicle Show to raise funds for the MND Association, their chosen charity for the year.

Brian Powell, from Gwent MGOC says: “Our members decided that we wanted to stage our very own Classic Vehicle Show. We picked our charity by getting members to put their preferred choice in a hat. When the MND Association was chosen club member Angela Newton gave us a brief history of the illness and the Assocation.”

The show was a great success with over 200 classic vehicles on display. Over £1,800 was raised, which included £750 from the Club’s sponsors, Barclay’s Bank.

Organiser, Liam Dwyer who has MND, riding pillion with friend Don.

Bowled over. It may look like a sedate sport but playing bowls for 12 hours non-stop is a major achievement, as Brian Cracknell and Alan Yates discovered.

The two men were well supported by their club, Ashcombe Park Bowling Club in Weston-Super-Mare. It was a great family day out and included a raffle and barbecue.

The event was held in memory of club member Kate Creasey who died from MND last year. Her husband Jim supported the day and an impressive £2,200 was raised.

Striding out. Neil Sutheran and his sister, Lynne Dutton, took the risk of blisters in their stride as they completed the Great North Walk. The family set up the Sheila Sutheran Tribute Fund after their mum died from MND in 2008.

“We’d like to thank everyone who volunteered to complete the 10-mile walk with us,” says Neil whose family is currently fundraising ready to take part in the Association’s Great Wall of China Trek next May.

The Sutheran team at the Liverpool Great North Walk

Susan Spence Clarke and Michael Egan presenting cheque to Roger Lomas

editor’s desk


Hello All Mouseketeers

The following ‘email’ members would like to make contact with others.

Noel Boland, Gloucestershire: [email protected] Burton*, Mid Glamorgan: [email protected] Coughlin*, Gwent: [email protected] Cowie, Denbighshire: [email protected] Edmands, Surrey: [email protected] Gormley*, Newquay: [email protected] Stuart Hignell*, South Glamorgan: [email protected] Kanathil*, India: [email protected] Keenan*, Lincoln: [email protected] Mugonyi, Blackpool: [email protected] Mohring*, Wigan: [email protected] Geeta None*, India: [email protected] Norman*, Great Yarmouth: [email protected] Paterson, Argyll: [email protected] Sedgwick*, Cumbria: [email protected] Shergold, Wellingborough: [email protected]

*indicates people with MND

Please contact the Editor if you would like to join the mouseketeers.

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

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

The International Alliance on ALS/MND www.alsmndalliance.org/ The ALS Association www.alsa.orgThe ALS Survival Guide www.lougehrigsdisease.netThe Primary Lateral Sclerosis site at: www.geocities.com/freyerseThe ALS Digest email registration site is: [email protected] Society of Canada: www.als.ca

Others:Kennedy’s Disease Association www.kennedysdisease.org. A small support group for people with Kennedy’s Syndrome has been set up in the UK. Email [email protected]. Please include the word ‘Kennedy’s’ in the subject line.Liam Dwyer, who is living with MND has developed a new website www.disabled4disabled.co.uk/

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

Don’t forget that MND Connect - 08457 626262 - is always on hand to offer information, advice and support. You can also email [email protected] or view our website www.mndassociation.org for further information.Thumb Print is available as a pdf on our website. Visit www.mndassociation.org/membership

Useful sites about MND (also known as ALS and Lou Gehrig’s Disease):

If you have any questions, experiences, comments or suggestions you would like to share with us and other readers please send your letters to: the Editor, Thumb Print, PO Box 246, Northampton NN1 2PR or email to [email protected]

LettersA grand day out

We had such a lovely day at the HRH event at St James Palace and will always remember the occasion. I wrote a diary account of the day and have shown the photographs to my family. I really enjoyed meeting Princess Anne and seeing inside a real palace. We also managed to see the changing of the guards and my Uncle John who met us off the coach took us to see Westminster Abbey and through St James’s Park. We left London at about 6pm. It took another six hours back to Totnes. I was too tired to do anything else but sleep for the rest of the time. I loved it!

The photos you sent arrived on my granddad’s birthday which meant so much to us and my Mum too. Thank you for a lovely day.

Rebecca Jarvis, S Devon

Rebecca, whose granddad died from MND, won the 30th Anniversary Christmas Card Competition for under 10 year olds.

A satisfactory solution

The following summary of my recent experiences in arranging ambulance transport might be helpful for other members who use a NIPPY ventilator system.

Earlier this year, a week’s respite care in my local hospice had been arranged for me. When I tried to arrange for ambulance transport from home I was told that, as I am fully dependent on a NIPPY 3 ventilator, I could only travel in the presence of a paramedic.

This entails the use of an emergency ambulance rather than conventional wheelchair transportation.

I wrote to the chief executive of the local ambulance authority and received a prompt and helpful response. I was visited by two senior paramedics to assess the situation. They stated that their only concern had been the use of, and potential problems with, the ventilator. As a result of their visit, they now understand that the ventilator, which is both mains and battery powered, presents little hazard. They informed me appropriate documentation would need to be drawn up and carried in the ambulance.

This has been a most satisfactory outcome, and will now enable me, and perhaps others, to arrange regular transport to my local day hospice and hospital appointments, without occupying an emergency ambulance and its skilled personnel.

Name and address supplied


books and calendars

Getting my voice back

Can I through your magazine thank the family of Peter Oldershaw for allowing his article on the Proloquo2go text-to-voice communicator to be printed in the spring 2010 edition of Thumb Print. Without it I would not have my voice back.

My brother, Joe, died of MND 20 years ago and he had a voice synthesiser and one of my lasting memories of Joe was a Dalek voice. When I was diagnosed and my voice got worse I kept saying I do not want a voice synthesiser and I carried on writing everything down and passing the pad around. This is not an ideal solution as you can imagine, particularly if I have a few visitors. By the time everyone has read my comments, the conversation has moved on!

The thing that upset me worse of all, I could not talk to my grandchildren aged seven and five.

Request from ‘down under’

I live in Perth, Australia and have been researching my husband’s family tree since finding out that there was a history of MND in the family. I believe it to be of the bulbar palsy type.

I have been told that we are ‘lucky’ as our family appears to have a low penetrance level. My husband’s side of the family is safe from the gene.

It was noted by a neurologist that it would be good to trace and document the illness through our tree. My research has now taken me to beautiful Cornwall where I need a little bit of help!

I am looking at two families that came to South Australia from St Agnes, Cornwall in the mid 1800s, the Barbary and Paul or Paull families. Also Waters from Kent and Carter from Cambridgeshire.

Susan Paul(l) born 1819 died 1863 South

Last Orders: A Drinker’s Guide to Sobriety In 2008, to mark the 15th anniversary of his father’s death from MND, Andy McIntyre went teetotal for a year and raised just under £8,400 for Association funds.

Andy has now written a book about his experiences: Last Orders: A Drinker’s Guide to Sobriety. It is self-published and available on Amazon, priced £9.99.

Australia, aged 43 of debility, daughter of John and Jane/Jenefer Paul(l) (nee?), married Philip Barbary (Barberry) 1836 in St Agnes, Cornwall. Philip, born 1817 died 1889, South Australia aged 71.

They had four children in Cornwall before sailing for Australia and having seven more children. It is their tenth child, Peter, my husband Marc is descended from. Peter lost two daughters to MND and they in turn lost a son each. I think Susan had another sister Jane/Jenefer but I’m unsure of any other siblings at present.

I hope this information may jog someone’s memory, or maybe someone has these names in their own family tree. I would appreciate any information from any of your members regarding familial MND.

Rosie Poole, Perth, Western [email protected]

However, when I read Mr Oldershaw’s article I immediately thought this the answer and bought an Ipod, small X-mini speaker and the Proloquo2go App. Shopping around on the internet I managed to get the cost down to about £260. Now Ben, four nearly five, says: “Can I borrow your machine Nana.” And Georgia who is seven tells everyone that Nana has got a machine that talks to her.

This device has given me my social life back as I can slip it into my pocket or handbag and can talk to people anywhere. Everyone who sees it, doctors, speech therapists, friends and family are impressed and it also makes people more comfortable speaking to me.

Anyone who would like any further information can contact me at [email protected]

Margaret Mohring, Wigan

Ladies strike a pose for MND calendar A group of Devonshire women have bravely produced their own stylish version of the infamous Calendar Girls shoot for Simon Wellington. Diagnosed with MND in 2006, the calendar is the latest show of support by Simon’s friends and family.

Elaine from the group said: “Although initially a little tentative, we embraced the idea whole-heartedly. The calendars are a bit of fun.”

The group is hoping to raise £20,000. You can help by ordering a calendar, priced £6.99, from www.mndlovelyladies.com

Christmas 2010 Collection Christmas cards and wrapping paper. Branded items to raise awareness.

Three easy ways to order:•By phone•By post•Online at www.mndassociation.org/shop

www.mndassociation.org/shop

Christmas 2010collection

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


A U T O M O B I L I T Y L I M I T E DBROTHERWOOD

NEW AND USED CONVERTED CARS

Let us give you a handchoosing a wheelchair

accessible car

We can make life this easy for you!

Visit the factory or arrange a home demonstration

Telephone: 01935 872603

E.mail: [email protected]

Website: www.brotherwood.com

Fiat Multipla

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

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


“He used to find it difficult to hold his mobile phone and often dropped it. Now I know he can text me from his Lightwriter® which is in front of him all the time and we can keep in touch easily.”

Brian

For a demonstration or information email [email protected] or call 01954 281 210 quoting ref: TP0410

In one small package, the Lightwriter® SL40 is an exciting text-to-speech communication aid which provides the capabilities to communicate efficiently and effectively either face to face or by SMS texting.

The Connect model includes the addition of mobile phone technology allowing you to make calls while you are out and about.

SL40

®

SL40 CONNECT

®

Manufacturer of the Lightwriter®

dedicated to communication

For over 35 years Toby Churchill Ltd has been providing a range of dedicated communication aids called Lightwriters® that enhance the speed and scope of independent communication skills for users

A communication aid can be a part of the process to becoming more independent whilst adjusting to living without the full use of your voice.

Lightwriter® technology can not only provide faster more efficient ways of forming words and phrases but it can widen the scope of your communication using mobile phone technology, with SMS text or voice calling.

Brian is more independent when left at home on his own:

Irene, Brian’s wife

Please send me:

information about MND

information on the work of the Association

information on how to become a volunteer

a membership form

I am a: person with MND

carer

health and social care professional

other

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

Legacies Personal tribute funds

Gift aid Give as you earn

Fundraising

I enclose a donation of £

For credit card donations telephone national office: 01604 250505

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

NAME

ADDRESS

Postcode

Email

Your details will be added to our database. From time to time we may write to you regarding developments about

MND to seek your support for our work.

Please tick the box if you do not wish to receive any further mailings.

Information, advice and support● MND Connect

● Printed publications

● Educational opportunities and service development advice for healthcare professionals

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

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

independence and comfort for people with MND

Financial support● Financial support is available to help families with additional

costs which may arise from living with MND

Further informaton on the above services is available from MND Connect

REGISTERED CHARITY NO. 294354

✂

The MND Association offers a wide range of

services for people living with MND, their

carers and health and social care

professionals.

Information, advice & supporton all aspects of MND

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

website: www.mndassociation.org

Autumn_2010

Documents

Transcript of Autumn_2010