Thumb Print - Winter 2017

The magazine of the Motor Neurone Disease Association

Winter 2017

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Highlights from Dublin All the news from our 27th International Symposium on ALS/MND

welcome…

6-7

In December I had the tremendous

Serving up something new

honour of welcoming more

Looking ahead to the launch of our new cookery guide

than 1,100 delegates to the 27th

12-13

International Research Symposium

Your Stories

on ALS/MND in Dublin. Our annual

Sharing your experiences of life with MND

event was the biggest yet, and

14-15

Communications and wheelchairs explained Helping you get the equipment you need

26-27

How Gemma is fighting back against MND Gemma Middleton, living with MND, pictured on the cover with some of the friends who have helped her raise £14,000 for the MND Association

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New year, new challenge!

Find a fundraising event to suit you

30-31

offered a unique opportunity for the world’s leading MND researchers and clinicians to come together and showcase their work.

Turn to page 4 and 5 for some of the highlights from Dublin.

Before the Symposium I also attended the annual meeting of the International Alliance of ALS/MND Organisations. We heard how collectively the ALS/MND Association community had contributed more than $60m to global MND research in 2015.

It is an astonishing amount of money and only possible thanks to the support of our MND communities.

I came away from Dublin with a renewed sense of optimism

A step in the right direction

that the work going on across the world is leading to a much

Celebrating your Walk to d’feet successes

greater understanding of the causes of the disease. It is also

38-39

Your voice Our members share their opinions

helping to improve the care received by people living with MND today and since joining the charity four years ago I have personally seen how far this has come.

With our new strategy for the next five years, we are committed to continuing to be a significant global investor in

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, PO Box 246, Northampton, NN1 2PR. Reg. charity number 294354.

Editorial and advertising enquiries: Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch.

research to further our understanding of MND, develop new treatments and, ultimately, find a cure. We will also continue to do everything we can to support people living with MND, their families and carers.

Thank you for everything you do to support our vital work and I wish you a very peaceful New Year.

Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint

Sally Light The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply that those products or services will be provided, funded or available via the Association.

Chief Executive

www.mndassociation.org

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symposium

Largest international MND meeting in our history A

record number of MND researchers, clinicians and health and social care professionals (HSCP) attended this year’s International Symposium on ALS/MND organised by the MND Association. Over 1,100 delegates from 41 countries attended the meeting in Dublin, making it the largest Symposium in our history.

We know that the key to defeating MND lies in fostering strong collaboration between leading researchers around the world and sharing new understanding of MND. We also know the care received by people living with MND today can be greatly improved by HSCPs sharing their learning and understanding on how to best manage the disease.

Dr Brian Dickie, Director of Research Development said: “We will beat this disease through global collaboration. Bringing the world’s MND researchers together in one place to share ideas and expertise enables them to go back to their laboratories with new knowledge to complement their own research. They also return to their clinics with new ideas and insights into how to change practice for the benefit of people living with MND.

This year we had a record-breaking 480 posters

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“MND research is in an exciting place with more projects underway and more money invested than ever before. To see the commitment and dedication shown by teams around the world, keen to share their knowledge and experience with one another is very heartening.”

The Symposium was opened by Dr Richard Bedlack, who presented findings from ALSUntangled, a resource for people affected by MND to help provide scientific rationale to some of the unproven treatments discussed online.

“To see the commitment and dedication shown by teams around the world, keen to share their knowledge and experience with one another is very heartening.”

ALS Untangled was one of the ten main themes from the Symposium that we focused on our Symposium Live pages on our website.

Another key theme in Dublin this year was Project MineE, the international genetics project analysing DNA from people with MND. Its goal is to find out more about these subtle genetic risk factors, using a technique called whole genome sequencing.

Much of the research presented at the Symposium linked to this project highlighting the importance of this resource in the global effort to find the causes of MND. Our Symposium provided an opportunity for those contributing funds and analysing DNA samples as part of Project MinE to share progress made in analysing the data and how people are interpreting the results.

To read more about the extensive research presented at the Symposium visit our Symposium Live pages on our website www.mndassociation.org/symposiumlive

Remembering those lost to MND at Christmas

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Dr Bedlack opens the International Symposium on ALS/MND

The Convention Centre Dublin lit up in MND Association blue and orange

Belinda’s highlights

M

ND Association’s Head of Research Development Belinda Cupid said: “My highlight was the sheer buzz of having over 1,100 researchers and clinicians in one place. As there were two and sometimes three talks happening at the same time, and two locations for tea, coffee and lunch breaks, the only time that you realised how many people there were was during the conference poster sessions.

The energy and enthusiasm of delegates really struck home. Virtually everyone I spoke to talked about new projects inspired by the presentations that they’d heard or seen, or new collaborations discussed.

We heard updates on clinical trials – most of these talks explained the detail behind the headlines that we were already aware of. It’s that detail that improves our understanding on how these treatments can help people with MND. Or if the treatments don’t help, why not. There’s more information on current clinical trials on our website www.mndassociation.org/clinicaltrials There was a lot of discussion about the different ways people experience MND: with some experiencing faster or slower progression of symptoms, and how the pattern of symptoms changes over time. If researchers can predict disease progression or understand why MND is different in different people then we can be much smarter at designing clinical trials.

ISITORS to the MND Association’s head office in Northampton were greeted by the sight of a beautiful Christmas tree over the festive season, thanks to the generosity of a local garden centre.

Receptionist Teresa Deacon, Joan Randall from the Northampton Branch of the Association and Chris Hull, who is living with MND approached Wyevale Garden Centre with the idea of creating a Christmas tree honouring the memory of all those who have died from MND over the past year.

Richard Durrant, manager of the garden centre in Northampton was quick to offer his support and donated a six-foot real tree, which had pride of place at David Niven House over Christmas.

Teresa said: “We were absolutely delighted – the tree was beautiful and the perfect way to remember those who had died from MND in 2016.

“We are so grateful to Richard and everyone at Wyevale Garden Centre for their support.”

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news

Serving up new enjoy food and “MND makes you constantly question, ‘What’s next?’ and affects the whole family.

So much control is taken away, but food is one area where you can take a little of that control back.”

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new resource and cookbook for people living with MND is being launched by the MND Association.

The new guide, called Eating and drinking with motor neurone disease has been created in response to feedback from people living with MND and their carers. They wanted something that shared tips and experiences from other affected families.The idea was to provide something that felt like a friendly cookbook, so it needed to be visual and appealing too.

The resulting guide will feature lots of photos, quotes and anecdotes, with a little humour along the way. It also offers information to help with swallowing difficulties, which may affect people with MND. Continuing to enjoy food and drink by mouth, for as long as you feel safe or wish to do so, is important to quality of life.

Dimple Thakrar, dietitian at Fresh Nutrition said: “MND makes you constantly question, ‘What’s next?’ and affects the whole family. So much control is taken away, but food is one area where you can take a little of that control back.

“Eating is not just about nutrition, it’s also about pleasure and being sociable. Sharing food can be important too – it’s one of the ways we show people that we care.”

The content of the guide includes information about nutrition with MND, eating out, supplements, thickeners, food consistencies and techniques for preparing easy-swallow meals. There will also be an extensive recipe section of easy-swallow dishes, which will replace our previous MND Association Recipe Collection.

Feedback, surveys and interviews with families affected by MND have provided invaluable contributions to the guide.

We also held a cookery demonstration at Northampton College and invited some people with MND and their carers to take part.

Dimple Thakrar pictured left at the cookery demonstration and right with those who took part

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from our chair

ways to drink

SE EA DIS

N TIO IA C SO AS

Christine Hull, living with MND in Northamptonshire, said: “It was a really enjoyable event, with lots of laughter, but we learnt a great deal, too. I need softer food now and I’m looking forward to adding some of these tasty and different ideas to my diet.”

Kaye Stevens, Care Information Manager at the MND Association, was delighted with the results from the event.

“We’ve had lots of feedback and recipes from people with MND and their carers on this subject already, but with a practical element such as food preparation, nothing beats getting people together to actually try things out,” she said.

E N RO EU N

“I need softer food now and I’m looking forward to adding some of these tasty and different ideas to my diet.”

R TO O M

GOING FURTHER TOGETHER

TOWARDS A WORLD FREE FROM MND

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Getting to grips with the recipes

“The discussions were candid, revealing and full of good humour. We are incredibly grateful to all the participants, Chris, Geoff, Ian, Margaret, Brian and Janette. And of course Northampton College for acting as our hosts too.”

Celebrity chefs, Prue Leith, Levi Roots and Dan Doherty have also donated recipes for the guide, along with featured dishes from experts and people with or affected by MND. Nina said: “I hope this new guide will help to support, encourage and inspire people with MND and their families, in the process of change that MND can bring with eating and drinking.”

To pre-order a copy of the new guide or other publications, please contact our MND Connect helpline: 0808 802 6262 or email: mndconnect@mndassociation.org You can also download publications at: www.mndassociation.org/publications including the following information sheets: 7A – Swallowing difficulties and 7B - Tube feeding

ST RA TE G Y

Dimple Thakrar was chef for the day, with help from Nina Squires, Speech and Language Therapist at Queen’s Medical Centre, Nottingham University Hospitals Trust.

Demonstrations of fork mashing, piping, purees, thickeners and food moulds showed how different consistencies can meet the needs of people with swallowing difficulties, while still making food look appealing and appetising.

The event helped gather photos, video content and conversations with participants, to help illustrate and raise awareness for the new publication.

As we start a new year, the MND Association is proud to launch its new five-year strategy.

Building on the key developments and successes of the last strategy, the whole MND family has again been involved in shaping this important document, which will steer our work in supporting people living with MND, their families and carers.

It also takes into account the many challenges we will face over the coming months and years such as the potential impact of Brexit.

I would like to say a big thank you to everyone who contributed and we are extremely grateful for all the suggestions and ideas you have put forward.

We have developed six key goals which now form the foundation of our future work and you can read more about them by visiting www.mndassociation.org/strategy However, as well as devising and implementing a long-term strategy, it is also important for us to recognise that people living with MND just can’t wait.

Our commitment to them remains as strong as ever. People living with MND are at the heart of everything we do and we will do everything we can to ensure that they – as well as their families and carers – have access to the very best care and support possible, when they need it.

Finally, I would like to thank you all for continuing to support the MND Association and our vision of a world free from MND. I wish you all a very peaceful New Year.

English logo

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Welsh logo

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Alun Owen, Chair, Board of Trustees

www.mndassociation.org

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feature “I had a conversation with him two years ago and he said how much he missed being able to sing and it was something which just struck a chord with me – even though he could no longer sing, the music was still very much within him.”

A song for Simon 8

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SONG based on one man’s journey with MND, his faith and his heartbreak at no longer being able to sing has been released to raise money for the MND Association.

Called There’s a lot going on inside, the song is based on the experiences of Simon Aspray, a former teacher from Basingstoke who was diagnosed with Primary Lateral Sclerosis (PLS) a rare form of MND in 2005.

The song was written by his ex pupil and family friend Rebecca Beese. She wrote the song and recorded it in secret with a group of musicians including Simon’s wife, Jane.

Rebecca explained: “Rather than become embittered about being diagnosed with MND, Simon never lets it get him down.

“I had a conversation with him two years ago and he said how much he missed being able to sing and it was something which just struck a chord with me – even though he could no longer sing, the music was still very much within him.”

Simon said that music had always been an important part of his life.

“I’d been a choirboy in my childhood,

and I learned lessons about voice that lasted. I was brought up on classical music, but in my teens I discovered rock and I now enjoy an eclectic mix of styles.

“In my late teens I learned flute and guitar, and later got involved in lively music in a church context, and barbershop in the school one.

“I found music a great release from the strain of working as a teacher. It was heartrending to find my fingers wouldn’t cooperate the way I was used to, and when I found my voice losing range, timbre and power, well, I thought my heart would break.

“I work hard now to enjoy activities vicariously, and although it’s obviously not the same, I can ‘feel’ my fingers and throat trying to respond, and that’s great, as far as it goes.

“As a committed Christian, praising God was also a major aspect of music for me.

“For many years I would lead the children at school in assemblies, including, as a youngster, Rebecca, hence the religious theme of the song.”

Rebecca played the song to Simon and

his family at an emotional meeting in August, prior to its release on Amazon.

Simon said: “I was told that Rebecca had something for me, and that I’d better be prepared for emotional lability to raise its head!

“Honestly, I had no clue at all as to what was going on, until the evening she came round.

“You can readily imagine I was in equal parts astounded and deeply moved, particularly that Rebecca had assembled a team of competent musicians and worked with them in secret for about two years!

“Even my wife and closest confidante Jane was in the know, she played four notes on a glockenspiel.”

Rebecca said it had been a very special moment. “We all just listened and tears gently rolled down Simon’s cheek. I also presented him with a photobook which contains pictures of all the musicians who took part.”

To download the song simply go to www.amazon.com and enter the song title. All proceeds from each sale will be donated to the MND Association.

Simon Aspray and Rebecca Beese share a love of music

www.mndassociation.org

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care

Supporting children when they need it the most A

NEW guide offering support to professionals who work closely with children whose families are affected by MND, has been launched.

The guide, which is designed to be used by teachers, school nurses, social care professionals, youth workers, student support services and employers offers information about MND and how it can affect young people.

It also suggests ways adults can adapt situations to provide support to the child or young person who has been affected.

The guide, which can be sent to a school, university or employer, or straight to a family, forms a small part of the work currently being done by the MND Association to improve the care being offered to support families whose lives are affected by MND. Karen Welsenaer, the MND Association’s Children and Young People Development Manager said: “The aim for 2017 is to improve how we identify families with children as soon after diagnosis as possible.

“Knowing about families with children early on will enable us to help them by providing resources and support them in accessing the extra help available.

“We will also be working with our

branches and groups to provide families with more opportunities to meet others in the same situation.

“We will work on a newsletter for children and young people and support them with memory-making and digital legacy ideas too.”

“Knowing about families with children early on will enable us to help them by providing resources and support.”

In the past year, the MND Association has met with its members who have helped to identify new resources and the MND Association’s information and guides for children, young people and carers have been updated.

Details about our full range of information for children and young people, including our guide So what is MND anyway? can be found at www.mndassociation.org/ypinfo by calling MND Connect on 0808 802 6262 or via email at mndconnect@mndassociation.org

New training films for professionals

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HE MND Association produces a wide range of information resources and hosts education sessions to help improve health and social care care professionals understanding, care and support for people with MND. Our newest resource is Understanding MND. This training video is designed to introduce professionals to MND through the experiences of four people with the condition.

We are very grateful to the families who took part in the film and shared their experiences on camera.

The film can be watched in full, or in separate chapters: • About MND • Care and support for people with MND • Diagnosis of MND

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• Physical effects of MND • Psychological impact of MND • Respiratory symptoms in MND • Bulbar weakness in MND • Cognitive change, dementia and MND • S upporting carers and family affected by MND • Palliative and end of life care Professionals can watch the films at www.mndassociation.org/ understandingmnd, or it can be ordered on USB stick or DVD, which may be used at training sessions.

Copies cost £5 plus postage and packaging and can be requested from MND Connect on 0808 802 6262 or via email at mndconnect@mndassociaton.org

Ricardo Andrada who is living with MND and his wife, Vicky

Investing our Ice Bucket windfall The story so far

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HE summer of 2014 is one we will never forget. It was the summer where social media was dominated by videos of people having a bucket of cold water poured over their head, raising an incredible £7.2 million for the Association.

We end 2016 (at the time of going to press) having so far spent over £4.7million, 65%, of the Ice Bucket windfall. When we surveyed our membership, overwhelmingly 80% of you wanted the money invested in MND research. To date we have invested £4.1 million in our research programmes. One of these includes a major initiative to find the genetic factors that predispose people to developing MND. £260,000 has been invested in helping people with MND. We know that the provision of communications aids is patchy across the country, therefore one of our first actions was to employ a new a communication coordinator role, as a single point of access to help improve provision and information about communication aids for people with MND. Another area that has received investment is the development of our information for children and young people, with the publication of a new guide and app So what is MND anyway? www.mndassociation.org/young-person-web-app People with MND tell us how important it is that people know about the disease and have an understanding of what it is.

We have spent £200,000 to build on the unprecedented level of exposure the Ice Bucket Challenge gave us and invested in powerful awareness and campaigning activities to help ensure the needs and rights of people with MND are recognised and met. The money helped us achieve How we spent the money a reach of up to 75 Volunteering £100,000 Care £260,000 million people in our last awareness campaign. This funding included investment in our MND Charter campaign that received 33,630 signatures from individuals and organisations.

Campaigning Research It has led to work £4,150,000 and raising awareness with health and social £200,000 care professionals, national and local politicians and organisations, including councils, to improve services for people with MND and their carers. You can read more about our MND Charter on page 18.

Our volunteers are incredibly important and to date we have spent £100,000 to help us recruit and train 500 more over the next three years.

Chief Executive of the MND Association, Sally Light said: “Thanks to the Ice Bucket Challenge we were able to accelerate many of our plans and bring forward activities that would have taken years to fund.”

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your stories

‘Our journey has just begun’ Alice Canning bravely pays tribute to her mum, Nicky, who died from MND in May and explains how her family now want to use their story to help others.

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S a family of five all we ever did was make happy memories and have endless smiles with constant laughter. But in February 2016 we realised our lives were about to change.

In December 2015, Mum was struggling to walk as she always found her leg muscles were numb.

She went back to work as a teaching assistant, still struggling to walk and undergoing tests via her GP. It wasn’t until she took a nasty fall at work that my Dad decided to send her to a private doctor as we needed answers - quickly.

On 26 February, my Dad called me to tell me Mum had been diagnosed with motor neurone disease.

Nicky gave her children a pillow printed with her photo

I had no clue what this was or meant, and I remember sitting at work, searching MND on the internet to get answers.

When I arrived home, Mum was upstairs.

As I walked through the door I saw Dad, we both cried and said we would get through this together as a family, not knowing what would happen next.

I remember walking up the stairs scared of what I was going to say to Mum.

“My Dad was amazing and strong. Considering the circumstances he always kept us focused and positive.”

I jumped on her bed and just held her as we both cried - she told me I would have to be the one to tell my two younger brothers as she just couldn’t do it.

We went for a walk and I told them what MND was. As the weeks progressed, Mum’s

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Alice pictured with her father Derrick, and left with a precious picture of her mum, Nicky

abilities rapidly decreased and Dad did everything for her.

As April arrived, we realised the disease had got a hold of her and there was no slowing it down. Mum decided she wanted to put on a brave face and organised a party for our family and friends to celebrate my 22nd birthday.

It was overwhelming for all of us, but looking back now, I know it was the best thing to do.

Her breathing became a problem and on 7 May she was admitted to hospital.

My Dad was amazing and strong.

Considering the circumstances he always kept us focused and positive. He never

complained once about his sleepless nights or how much he wanted his wife to get better.

He was the perfect role model and I will forever be thankful for how much he loved Mum, who died on 21 May, just three short months after her diagnosis.

Motor neurone disease not only took our Mum, a wife and an amazing woman but also ruined our family. In many ways though, our journey has just begun.

Not only do we want to educate more people about MND, we also want to make sure there is as much support as possible for people who are experiencing MND and have similar stories to ours.

‘Memories of my Mum’ In April 2016, Amina Memon sadly lost her mother, Banu, to MND. Here, she shares her experiences.

M

Y mum Banu passed away in April 2016. I’ll never forget the day we got the diagnosis of MND back in December 2014. Mum simply did not understand what the doctors were telling her; it wasn’t just a case of being lost in translation either.

She was a sweet 80-year-old Muslim lady shielded from western society with little English and there she was in a tiny room with several professionals trying to engage her in a conversation about preparing for the end of her life.

Her response was to wave her bag, which contained her tablets for her various ailments, at the doctor saying, ‘But what about these, you must be able to fix this problem.’

I was stunned into silence and felt helpless. I wrote to the hospital speaking openly about our experience. I also wrote to the local MP, GP and social services.

They bent over backwards to accommodate the cultural needs of the family and what were very complicated and challenging living arrangements.

I had to push to get interpreters in place and even then it was hard for Mum because she couldn’t understand the reason why her faculties were failing her.

The MND Association was a great resource for us.

Last April we got a grant to pay for a disabled access vehicle and took Mum on her first seaside holiday. She had a wonderful time and didn’t want to go home. Mum came to England from India in the 1950s as a newlywed with my father whom she had met for the first time on her wedding night.

Amina Memon

Mum didn’t speak a word of English and didn’t know a single person. She had lost her mum at the age of two and left her father and siblings to start a new life in the UK.

“She taught us all that it is not only life that matters but the way we leave. She certainly left a lasting impression.”

Sadly, my father passed away before they could enjoy retirement together and Mum became the carer for my older brother who suffered chronic depression. She lived independently until she was diagnosed with MND. Last summer we settled Mum into a nursing home. The family was not coping and Mum was vulnerable. We worked hard to make sure she did not feel abandoned and she settled in remarkably well.

She rediscovered her love of classic Indian songs and would dance in her wheelchair.

An iPad, provided by the MND Association, opened up a new world for her. When she lost the ability to speak, it allowed her to communicate and she would write to us in Urdu and we could translate what she was saying. She loved watching videos on it.

It was during this time I really came to know my Mum and watched with joy

as she made so many new friends, even without any speech. Her swallowing became increasingly difficult but she still loved to taste, try different foods and eat with the other residents. We got great pleasure in finding things she could eat safely but which also tasted good!

The day before she died she had watched her great granddaughter make a straw doll and even from her bed she had offered to help. She was only bed bound for her last three days when she was too weak to get up.

Amina and her mum, Banu

In the end she was at peace and died with dignity. She taught us all that it is not only life that matters but the way we leave.

She certainly left a lasting impression.

She was an inspiration and will remain in our hearts forever. www.mndassociation.org

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care

Spreading the word about communication aids Helping you to stay in control

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OU may have heard about communication aids but are you aware that Environmental Controls (EC) should also be available for people with MND? EC devices can operate the television or telephone, or access a computer using speech or switches.

For more information about EC contact your Occupational Therapist (OT). If you are having trouble obtaining EC please contact communicationaids@ mndassociation.org

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ommunication aid provision is vital for people with MND but with the advancement of technology and services in recent years it is sometimes difficult to know where to begin.

Also known as Augmentative and Alternative Communication (AAC), referral to a speech and language therapist (SLT) is key to obtaining a device right for you.

A local SLT should be able to carry out an assessment and then either: • Provide an appropriate device • S eek funding for a device from statutory services (such as Clinical Commissioning Groups in England, Health Boards in Wales or Health and Social Care Trusts in Northern Ireland) – if this is not available or not timely then the MND Association will try to support the assessed need • R efer on to a specialist AAC service, who may carry out a specialist assessment and provide appropriate equipment.

In England, there are 15 specialist AAC centres who will assess and provide communication aids for ‘complex cases.’

This is someone who has loss of voice and loss of limb function. If someone with MND is still able to access a device with

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their hands then the local SLT would need to support the application. Those people with a rapidly progressive disease, (like MND) can be referred before the criteria is met and, if appropriate, will be prioritised based on clinical need.

People referred to an AAC specialist centre are not expected to travel to the centre, instead the centre will provide the assessment wherever is most convenient.

In Wales, a similar arrangement is in place with the specialist centre at the Rookwood Hospital in Cardiff.

This is an all-Wales service and like the services in England will prioritise based on clinical need.

In Northern Ireland, health and social care trusts are expected to fund communication aid provision but there is also a specialist service at the Communication Advice Centre in Belfast which can support and advise appropriately.

For any advice about AAC provision, please contact our MND Connect helpline on 0808 802 6262 or email our Communication Aids Coordinator, Matthew Hollis at communicationaids@ mndassociation.org

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Voice banking – the options

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OICE banking, is the process of recording a set amount of phrases with your own voice, which can then be converted into a synthetic version of your own speech and used in communication devices, if required as the disease progresses.

To voice bank, you need a PC or laptop and a USB connection headset microphone, something which the MND Association may be able to support you with. There are various voice banking services available that range in price, with some offering the service at no cost.

Typically it will take a minimum of six to eight hours to record the necessary phrases, of which there are usually about 1,600.

Voice banking can take some time and be tiring, but the benefits

of maintaining identity and social inclusion can be valuable.

The following information sheets are available for people living with MND or professionals who require more information about the subjects raised on these pages: For people living with MND: 7C – Speech and Communication Support information sheet which is available from MND Connect or by visiting www.mndassociation.org/ publications For professionals visit: www.mndassociation.org/aac www.mndassociation.org/ voicebanking For queries contact: 0808 802 6262 communicationaids@ mndassociation.org

Augmentative and Alternative Communication Centres 1.

Communication Advice Service, Belfast, covering Northern Ireland, 028 95046866, bronagh.blaney@belfasttrust.hscni.net

10. Bristol Communication Aid Service (BCAS), covering the South West, 0117 414 5850, cacadmin@nbt.nhs.uk

2.

Regional Communication Aid Service (RCAS), covering the North East, 0191 287 5240, rcas@ntw.nhs.uk

11. Dame Hannah Rogers Trust, covering the South West, 01752 892461, adamclark@discoverhannahs.org

3.

ACE Centre (North), covering the North West, 0161 358 0151, enquiries@acecentre.org.uk

12. Chailey Communication Aid Service (CCAS), covering Sussex and Surrey, 01825 722112, sc-tr.chaileyaccservice@nhs.net

4.

Barnsley Assistive Technology Service, covering Yorkshire and the Humber, 01226 432159, barnsley.at@nhs.net

13. Kent and Medway Communication and Assistive Technology, covering Kent and Medway, 01227 864083, acat.service@nhs.net

5.

Electronic Assistive Technology Service (EATS), covering the East Midlands including Northants and Milton Keynes, 01522 697282, eats.lincoln@nhs.net

14. Wolfson Neuro-Disability Team Communication Service, Great Ormond Street Hospital, London (up to 16 years), covering London, 020 7405 9200, 6.

Access to Communication and Technology acsadmin@gosh.nhs.uk (ACT), covering the West Midlands, 15. Assistive Communication Service (ACS), 0121 466 3050 bchnt.actduty@nhs.net covering London Central and North, 7. Communications Aid Service East of 020 8102 4067, nikky.steiner@clch.nhs.uk England (CASEE), 01223 349401, casee@nhs.net

8.

ACE Centre (South), covering Wessex and the Thames Valley, 01865 759800, enquiries@acecentre.org.uk 9. A rtificial Limb and Appliance Centre (ALAC) Cardiff, covering Wales, 02920 313930, cav_alas@wales.nhs.uk

16. Compass Assistive and Rehabilitation Technology Service, covering London North West and South West, 020 8780 4500, compass@rhn.org.uk

17. Guy’s and St Thomas’ Assistive Communication Service (GSTT ACS), covering London North East and South East, 020 3049 7751, gst-tr.acs-hub@nhs.net

The right wheelchair for you

I

T is estimated that 80% of people with MND will need a wheelchair, but often people are unaware of how to access their local NHS wheelchair service or the type of wheelchair they are entitled to.

The MND Association’s Wheelchair Service provides information and support on wheelchair-related queries and issues.

Mary Collier has recently been appointed as the new service co-ordinator and is working alongside the existing co-ordinator, Derek Williamson.

The team also consists of MND Association specialist wheelchair therapists who are able to provide clinical advice and support as well as training for local wheelchair service personnel.

Local wheelchair services are provided through the NHS in England and Wales and the health and social care trust in Northern Ireland.

Each service has its own referral pathway and eligibility criteria, meaning there can be variations depending on where the person lives.

However, it is always important to have a posture and mobility assessment from the local wheelchair service as early as possible, to ensure the timely provision of a suitable wheelchair which can enable the individual to maintain independence.

The MND Association Wheelchair Service works closely with key wheelchair manufacturers and this has resulted in the creation of several different models of the Powered Neuro Wheelchair which is suitable for indoor and outdoor use and can be adapted to meet changing needs.

These wheelchairs are designed to meet the needs of the majority of people with MND and to be affordable to local wheelchair services to enable them to prescribe them. Therefore, they are well-worth discussing during the assessment process.

For more information about the MND Association’s Wheelchair Service, including a video on the Powered Neuro Wheelchair, please visit: www.mndassociation.org/gettingsupport/wheelchair-service. You can also contact the Wheelchair Service Coordinator at wheelchairs@mndassociation.org.

People living with MND can also download information sheet 11C Equipment and wheelchairs, while professionals can download sheet P2 Wheelchairs for people with MND from our website. www.mndassociation.org

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news

‘Writing helps me to be a nicer carer’

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OR Deirdre Maher writing poetry offers a brief moment of escapism, a chance to pause and let her true feelings about MND tumble out onto a blank page.

Her poetry is dark, raw and unflinchingly honest about the realities of coping with MND, something which her family has been forced to do since her beloved husband Roch was diagnosed with the disease in 2009.

Like countless others, Deirdre cares for Roch while juggling a part-time job and at times has found the battle with MND almost unbearable.

But now, thanks to her love of writing, Deirdre finds she is able to cope much better, which in turn makes her a better carer for Roch.

“One of the hardest things I have found is trying to be upbeat and positive all the time, it’s incredibly draining.”

She said: “I know writing makes me a nicer carer. When I have written something, and got my feelings down on paper, I feel lighter.

“So often Roch will take his cues from me. If I am positive, he will be more cheerful and more able to tackle the challenges.

“One of the hardest things I have found is trying to be upbeat and positive all the time, it can be incredibly draining.

“When Roch was diagnosed he was given 14 months to live and we had to come to terms with the fact that we were going to lose him.

“Seven years on we are still chugging along OK, but we don’t know how long we will have together.”

One of Deirdre’s short stories, Wheelchair Candy, was highly commended in a competition run by Carers UK last year and she also writes a blog http://deirdreamonkeyonhisback.blogspot.com

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Last Times

Bucket List

Remember when you held me in your arms?

And how I thrilled to be in your embrace?

The way we walked together through the rain, your movements filled with such a restless grace.

I would have braved a greater deluge then had I but known you’d never walk again.

New York (one cane) – family Venice (two canes) – you and me Tenerife (your last swim ever) Dingle (The Old Place) – missing Mother Party! Eating, drinking (while you can) See out Christmas with the clan Take up smoking (just cigars) Get to football (wheelchair card) Witness our Kate graduate Live to see Tom come of age Speak your words of love before your tongue is twisted and deformed.

Remember how you raised a glass to ‘us’?

And lifted up our babies to be kissed?

The way you drove with pride and confidence.

That final swim together with the kids.

I would have lingered in the water then if I had known you’d never swim again.

We never know when each last time is come, until strength fails and one more power is gone.

Then I lament its loss and carry on, in wonder at the person you’ve become.

If I had known what lay before us then, I’d still go back and be with you again.

Still the list continues thus: Live on Live on Live on…for us.

Technology unlocks the door to freedom In the autumn edition of Thumb Print, Jean Waters shared her love of photography. Here, Lisa Stead tells how her father David has been able to rekindle his love of the great outdoors thanks to the support of his family.

M

Y dad, David, has spent a lifetime enjoying rambles long and short, climbing hills and mountains.

He retired to beautiful mid-Wales in 2004 and has enjoyed regular walks along the coast, in the mountains and along the rivers and valleys.

In 2013 his ability to walk began to suffer, and by 2015 walking on rough ground or a slope was impossible. By Christmas 2015 he was diagnosed with MND. Sitting in, and missing his favourite pasttime was depressing to say the least.

Now, one year on, Dad has been able to enjoy the outdoors again, after visiting www.disabledramblers.co.uk His first experience was along the Mawddach estuary from Dolgellau to Barmouth.

The Snowdonia National Park has an all terrain mobility scooter called a Tramper which they base at different locations throughout the park for people with disabilities to use.

David Haughton shares his love the great outdoors with his family, including his wife, Marian

A second opportunity arose when we discovered the National Trust has Trampers at some of their properties.

For a small donation and on a first come, first served basis, we enjoyed a beautiful autumnal walk around the estate, watching deer and enjoying the colours of autumn.

We have made a list of other places where Trampers are available and are looking forward to the Malvern Hills next.

Another option is to join a group and to venture into the outdoors together. To learn more there are websites and forums

such as www.ableize.com.

Dad has shared his love of walking with his family, and we all enjoy the outdoors.

So now we are looking forward to many more ‘tramps’, embracing the elements and being so lucky to have the technology to help.

Do you have a hobby you would like to share with other members of our MND family? Send your details to editor@ mndassociation.org or alternatively send them to the address on page 3.

Pedal power raises £31,000

A

TEAM of friends cycled the length of Great Britain raising £31,000 for the MND Association.

Led by Martin Vanstone, they cycled from John O’Groats to Land’s End in September.

It took 15 days and saw the group, called The Lifton Bikers, stop at a number of places en route including Fort William, Ironbridge and Wellington.

During the journey the cyclists – Luke Harris, Mike Wood, Martin Vanstone, Paul Davies, Malcolm Bird, Paul Arscott, Adam Pengelly and Alistair Batten – spoke to

many people who wanted to share their own experiences of MND and showed their support for the group by making donations.

On 20 October, the Cornwall Branch of the MND Association held an open meeting where five members of the group shared their story.

The Lifton Bikers would like to thank their friends, family and all of their supporters.

Martin’s brother-in-law Jeremy Durrant who inspired the challenge sadly died in November.

The Lifton Bikers celebrate arriving at Land’s End with Jeremy Durrant who inspired their journey. He sadly died in November

www.mndassociation.org

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campaigning

Campaigning for better care

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new report* by the Continuing Healthcare Alliance has found that the continuing healthcare (CHC) system in England is failing people with MND and other conditions.

They are subjected to an exhausting, complicated and intimidating process which has led to inadequate care packages, or being denied CHC altogether.

With the progression of MND, it can be difficult for people to manage their health needs and so they require extra professional care. This care can be provided through CHC – care that is arranged and paid for by the NHS, in the person’s own home or sometimes in a nursing home. This free care can make a huge difference to the wellbeing of people with MND and their families.

Only 30% of people with MND currently receive CHC and a further 33% are not aware of it or know that they may be entitled to it (Improving MND Care Survey, 2016).

In some cases, the process has been so slow, that when CHC funding has finally been granted, the person with MND has died, or died just days later.

The MND Association is a member of the Alliance and we are campaigning alongside the other members to make sure the CHC system is improved.

We are calling for better training for professionals and a clearer system for patients and their families. We want NHS England, clinical commissioning groups and the Department of Health to work with us to ensure no-one is left without the care they so desperately need.

To read the report and join our campaign, visit www.mndassociation. org/chc or phone 0207 250 8447.

Thank you *Thank you to our members who completed the CHC Alliance’s Failing to Care survey (May 2016). The findings of this survey contributed to this report.

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Fighting on in memory of Michael

V

olunteer Lorraine Sheahan lost her father Michael to MND in 2014.

Desperate to make a difference to the lives of others affected by this devastating disease, she decided to offer her support to the MND Association and campaigned hard to get Southwark Council in London to adopt the MND Charter.

Her hard work and dedication paid off and her story, has now been made into a campaigning film called Lorraine’s Story www.mndassociation/lorraine It follows Lorraine as she tries to raise the issue of care for people with MND with her local council.

After a meeting with her councillor, Lorraine makes an emotional formal presentation to a full council meeting.

Following a unanimous vote, Southwark Council decides to adopt the Charter, a document that sets out basic rights and care expectations for people living with MND and their carers.

She said: “It is nearly two years on from losing my Dad now and it feels like it was yesterday. Time does not make things easier. The process was a little daunting, but the MND Association was there every step of the way supporting me and the sense of achievement was amazing – I know Dad would have been very proud.

“I hope other people around the country will do the same and get their councils to adopt the MND Charter; it can really make a difference.”

Raj Johal, National Campaigns Manager for the MND Association said: “Lorraine is just one of many supporters who have successfully campaigned, or are currently campaigning, to get their local council to adopt the Charter.

Lorraine Sheahan with Emma Winter in a scene from the film

“We would like to thank each and every one of them. Their commitment to helping people with MND and their families through the hardest of times will make a positive difference to the MND community in their area. We urge more councils to get on board and adopt the MND Charter.”

The total number of councils which have adopted the MND Charter currently stands at 28. The most recent adoptions include: • Sutton Council and Sutton Clinical Commissioning Group – our first joint Charter adoption. Local decision-makers agreed that jointly promoting the MND Charter’s principles will positively ensure they are embedded in practice over time.

• Ards and North Down Borough Council • Northumberland County Council • Dartford Borough Council • Suffolk County Council • Oldham Metropolitan Borough Council To see if your council has adopted the MND Charter and to find out how you can get your council on board, visit our website www.mndcharter.org; send an email to campaigns@mndassociation.org or call 0207 250 8447.

The financial impact of MND

T

HE MND Association has partnered with Demos, an independent think tank to look into the financial impact of MND on all those living with it, their family and carers.

We would like to thank everyone who has already contributed to this very important piece of work and we’ll be publishing the findings later this year.

If you haven’t yet posted your questionnaire back to Demos, then please do it now, the closing date is 27 January.

Both the surveys, for people living with MND and for bereaved carers, can be accessed online until 27 January at www.mndassociation.org/get-involved/ financial-impact-of-mnd.

.

Taking the voices of people with MND to politicians

P

eople affected by MND represented the MND Association at the Labour and Conservative Party conference to share their experiences.

The MND Association attends the main political party conferences each autumn to raise awareness of MND and the issues faced by people with the disease.

This year we were joined by two of our volunteer Campaigns Contacts – Cris Hoskin (South Lancashire Branch) and Katy Styles (East Kent Group), who attended with her husband Mark.

Cris, who has lost her father, uncle, cousin and son to MND, joined us for the Labour Party conference in Liverpool.

She said: “The days were long and sometimes hectic but very worthwhile.

“It was a great place to meet people. I attended lots of fringe meetings, took part in a Hospice UK round table discussion on supporting carers of dying people to remain in employment if they wish to and met Julie Cooper MP for Bury and Shadow Community Health Minister.

Cris Hoskin, left with Julie Cooper MP at the Labour Party conference

“As a volunteer, I think it’s an excellent idea for MND Association staff and volunteers to attend events like this together. We had great discussions and learned from each other.

“I feel that I know more about how the Association works and I was able to tell my story, bringing a personal aspect to the relationship.

“The whole experience left me really motivated and more determined to continue working as a campaigner as part of the MND Association family.”

Katy, whose husband Mark is living with Kennedy’s Disease, a rare genetic disease of the motor neurones, joined us at the Conservative Party conference in Birmingham.

She said: “’Why is it important for the MND Association to go to a party conference? What difference will it make for people living with MND, their families and carers to be there?’ “These were the questions Mark and I were asking ourselves as we travelled to Birmingham in October for the Conservative Party Conference. We soon discovered it was a great opportunity to find out what issues were important to the party and in our case, the Government. The days were incredibly long but when we finished each night we knew we had brought the views of people with MND and their carers to each of the sessions.”

Volunteers make the case for people living with MND

M

ORE than 100 volunteers travelled to Westminster from across England, Wales and Northern Ireland in October for the MND Association’s annual parliamentary reception.

During the day, they shared their experiences of the issues affecting people living with MND, their families and carers.

The MND Association’s volunteers also raised the issue of the proposed changes to Attendance Allowance, a benefit for people aged 65 and over, with more than 50 MPs. They heard from Dr Jane Hawking, author and first wife of our Patron Prof Stephen Hawking, award-winning volunteer and artist Sarah Ezekiel, who is living with MND, and our Chief Executive Sally Light.

Sally said: “It was wonderful to see so many of our amazing volunteers gathered together and for them to have the opportunity to share their personal experience of MND with the MPs and peers present.”

Penny Mordaunt MP, Minister for Disabled People, Work and Health said: “It’s incredibly important for members of Parliament whether we’re ministers or whether we’re backbenchers to hear your

Pictured from left to right are MP Nigel Mills, Dr Jane Hawking, Zabun Nassar from the East London Group of the MND Association and Babar Bokhari.

stories. It helps us make better policy. The anecdotes and stories you tell us, we can talk about on the floor of the House of Commons and in the House of Lords. And it really does help us tremendously make better laws, make better policy and get you what you need.”

Among those people living with MND who attended was Lee Millard.

He said: “My focus for the day was

awareness of the disease. “’Do you know how common this disease is?,’ I asked everyone I spoke to.

“It was an excellent day, very well organised by the MND Association and it was great meeting many people I have got to know via social media.”

The MND Association would like to thank the 820 people who took part in our e-action and invited their MP to attend. www.mndassociation.org

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fundraising

“My Mum and Dad we I know they would hav F

OR Ruth Enion taking part in the Ironman Zurich Challenge was always going to be an emotional experience as it brought back wonderful memories of her beloved mum and dad.

At the age of seven, Ruth sadly lost her father Paul following an accident while he was training for the Canada ITU championships triathlon, aged just 40.

Then, in November 2014, aged 61, Ruth’s mother Dianne lost her battle with MND, having been diagnosed a little over a year earlier.

Throughout all of the sadness and difficult times, Ruth found herself drawn to triathlon and realised that she shared her father’s passion for the sport – a passion which helped her cope with the devastating effect MND had on her family.

She said: “Triathlon really helped me. I would just lose myself in it and it helped me to focus on something else.

“Mum first started to experience weakness in her hands and the rapid progress made it difficult to cope with.

Ruth’s mum, Dianne, pictured with her grandson Josh

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“By December Mum could no longer lift her arms, by January after many falls, she could no longer walk and by March she needed a feeding tube as she was struggling to swallow.

“Worst of all, by May, the disease stole her voice. Despite having this cruel disease she continued to be our rock. She was so brave.”

“I have just been overwhelmed by people’s generosity. The money we have raised and the messages we have received have all been wonderful.”

Three years ago, Ruth completed her first sprint triathlon and convinced her partner, Andy, to join her.

Ruth said: “He didn’t enjoy it and said, ‘never again!’”

But despite the initial setback, Andy agreed to join her at the Ironman Zurich Challenge in Switzerland, which was held 25 years to the month that her father had taken part in his first Ironman Challenge.

Five months and six days of training led up to the gruelling event in July, which consisted of a 2.4 mile open lake swim, a 112-mile bike ride and a marathon run of 26.2 miles.

Ruth also decided to raise money for the MND Association and to date has raised more than £3,000.

She said: “The event was amazing, it was just surreal. I felt connected to my Dad and knew I was raising money in memory of my Mum. “ Andy was by her side throughout and even had a surprise of his own waiting for her at the finish line.

She said: “He completed it in 12 hours and 10 minutes and I was a little bit behind him, finishing in 12 hours and 57 minutes.

“When I got to the finish line he got down on one knee and asked me to marry him. I said, ‘Yes!’”

The happy couple are now very much focussed on their future and hope to get married in Croyde, Devon, a place which holds happy memories for Ruth who spent many special moments there with her family on holiday.

She said: “I have just been overwhelmed by people’s generosity.

“The money we have raised and the messages we have received have all been wonderful.

“My Mum and Dad were just so amazing, I know they would have both been so proud of me.”

Paul Enion completing a triathlon

were just so amazing, ve been proud of me�

Ruth, pictured at the end of the Ironman Zurich Challenge 2016

www.mndassociation.org

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volunteering

‘She is our guardian angel and our great friend’ When someone is diagnosed with MND, volunteers from our team of 300 Association Visitors can offer one-to-one support and guidance when it matters most. Here, Ron Stevenson, who is living with MND, explains how much his Association Visitor, Chris Sheridan, means to him and his family while Chris explains how she first became involved.

I

“ am sorry to have to tell you, Mr Stevenson, that you have motor neurone disease, which is a terminal disease of the nervous system.

“I am afraid we are unable to offer you any treatment. We will, of course, refer you to one of our consultants who will keep an overview of your case.”

I couldn’t be sure these were the words used to give me the diagnosis after several months of scans and tests, because the word ‘terminal’ had definitely got my attention, and I was in such shock that even the phrase ‘no treatment’ had barely registered.

Having recovered my composure, I asked, ‘OK, how do you propose to fix this for me?’

The good doctors gently reiterated this would not be possible.

Gill and I had chosen to go for tests at UCLH Queen Square in London after our GP had said she suspected a neurological problem could be at the root of my rapid weight loss and exhaustion symptoms.

The waiting time for an appointment was relatively short, the hospital is an internationally renowned centre of excellence and our daughters Hannah and Polly both worked nearby.

Having spoken to Polly I wrestled with

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Association Visitor Chris Sheridan, right, is pictured with Ron Stevenson and his wife, Gill

how I would break the news to Gill and Hannah. I needn’t have worried as my darling wife had suspected MND all along, but wanted to save us from unnecessary angst in case it wasn’t.

Of course, neither of us had the remotest idea what was ahead, or indeed for how long I would survive.

Then, Chris Sheridan walked through our door.

It was not long before we realised we would not be alone in dealing with this devastating disease and the sea-change it would bring.

Chris is vice-chair of our local MND Association branch, a retired nurse and an Association Visitor (AV).

Of all the amazing health professionals we have met, no-one has supported us more than our incredible guardian angel and good friend Chris.

Our many questions were answered with empathy and gentleness, as we tried to get to grips with the implications of living with MND. Since that time, almost six years ago, Chris has been with us every step of the way, never more than a telephone call

away and constantly encouraging us to plan ahead.

AVs understand the whole family needs to be considered. Chris has always ensured that Gill’s needs are addressed and that she is fully aware she must take care of herself, and not fall into the trap of neglecting her own health.

This was never more evident than last year when Gill was rushed into hospital for an emergency brain operation and spent time in intensive care afterwards.

Chris was there for us throughout, selflessly giving of her time and keeping an eye on us as well throughout the recovery and recuperation period.

We are extremely grateful, and regularly count our blessings, that there are very kind people prepared to volunteer to become Association Visitors and to give up their time in order to learn how to help people living with such a difficult life-limiting disease.

Without our amazing Chris our pathway along the MND road would undoubtedly have been a great deal bumpier.

Chris’ story

I

T was an advert in The Independent which first caught Chris Sheridan’s eye, prompting her to apply to the MND Association to become an Association Visitor.

She said: “The advert read, ‘Are you a good listener, do you have a few hours to spare?’ It also said that training would be given.

“When the training was described to me I was really surprised at how thorough it was, so I expressed an interest and was interviewed for the role. I was successful and completed the training in December 2004.”

By her own admission, Chris, who had taken early retirement from her career in nursing in 2002, knew little about MND, her only experience being that her daughter-in-law’s mum had recently been diagnosed.

She currently keeps in touch with six people living with MND, through face-to-face visits and emails, as well as

volunteering for the West Sussex North branch of the MND Association, where she is vice-chair.

She has been visiting Ron for the past five years and has become friends with both Ron and his wife Gill.

She said: “I never cease to be amazed at how people cope with MND, not only those who are diagnosed with the disease, but also their carers. I can’t imagine what it must be like.

“To anyone who is considering becoming an Association Visitor I would advise them to speak to someone who is already doing the role to find out as much as possible about it.

“It is something that you give your all to, but I find it is really humbling and helps to put my own life into perspective.”

For more information about all of our volunteering roles visit www.volunteering.mndassociation. org/our-opportunities

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Fast Talker 3 is included with Grid 3, so you will also have easy access to email, Facebook, SMS and much more.

Download the free 60 day trial of Grid 3 with Fast Talker 3 and much more at www.mndassociation.org 23 thinksmartbox.com/grid-3

fundraising In October, The MND Association’s biggest ever team took over £125,000. Here, three of those who took part share their

‘Raising money in Dad’s name keeps me strong’

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S Cathy Haynes prepared to take part in the Royal Parks Half Marathon alongside a team of 41 of her closest friends and colleagues, one person was at the forefront of her mind.

Her father, Mike Burns, sadly died from MND in May 2010. Since then, she has devoted much of her time to raising over £160,000 for The Mike Burns Tribute Fund, set up by her family in his memory in 2010.

Mike was born in St Helens, Lancashire and moved to Birmingham with his mother in the 1950s where he later met his wife, Frances.

They had four children, Cathy, Elizabeth (Zibby), Jilly and Steve and moved to Southampton in 2005.

Cathy, who is a partner in an asset management firm said: “Dad was such an amazing person and it means so much to be doing something in his name, for me and all my family.

“The MND Association was so wonderfully supportive of Dad and us all, that we want to do something to help other people in the same situation and hopefully find a cure for this terrible condition.”

“I have been totally overwhelmed by the generosity and support from all our family and friends through six years of fundraising.”

Mike’s journey with MND began in 2007 when he started experiencing tingling in his arms as well as a persistent cough.

While doctors could find little wrong, Cathy said she remembered him saying he

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Cathy, centre, with her dad, Mike and mum, Frances

had lost all the muscles in his upper arms.

She explained: “Dad had always had an incredibly strong upper body and was sailing competitively on a laser at the age of 70. As he was then 73, we attributed it to old age.

“While he was booked in to see a neurological consultant at Southampton General Hospital who suspected MND, he was admitted to hospital and was diagnosed with pneumonia.

“Miraculously, Dad recovered and was able to breathe again on his own before MND weakened his chest muscles. He never complained, never lost his voice or his sense of humour and was incredibly brave throughout.”

Since setting up her father’s MND Association Tribute Fund, Cathy and her husband, Duncan, have taken part in a number of gruelling challenges including the L’Etape du Tour, the Alpe d’Huez Triathlon and the Ironman World Championships and the Royal Parks Half Marathon.

She said: “The Tribute Fund is a focus to try and help me through losing Dad by doing something in his name.

“Every time I receive an email or commemorative letter regarding The Mike Burns Tribute Fund I feel a

real emotional lift. I have been totally overwhelmed by the generosity and support from all our family and friends through six years of fundraising.”

And she had this message for anyone considering setting up their own Tribute Fund in memory of someone special: “It means so much to have something set up in memory of someone you love. I think of my Dad every day but to have something long-lasting that keeps his name out there to help other people keeps me strong.”

Cathy Haynes and her dad

For more information about Tribute Funds visit www.mndassociation.org/ tributefunds Alternatively, please call 01604 611864.

part in the Royal Parks Half Marathon, with 146 runners raising stories of love, loss and hope for the future.

‘Racing and helping those with MND is a beautiful thing’

J

úlia Fàbrega’s husband Nick is living with MND. He couldn’t be there in person but Nick tracked his wife’s race position online and rang her as she crossed the finish line, so he could be the first to congratulate her.

Júlia, who raised over £3,000 in 2016 in memory of Nick’s dad who also had MND, trained by taking long runs with her black Labrador puppy.

The training for these events help me focus my mind, and once again find things I feel excited about. They become goals that help me look forward to tomorrow.”

“All the events were amazing experiences. Sharing those moments with everyone with a cause was deeply emotional.”

She said: “Motor neurone disease shattered our lives. For the first couple of years I could not go one day without crying every time I was on my own.

“We did, however, get a dog, and very soon after he joined our family he got me out of the hole I had been digging since the day of the diagnosis. Our black Labrador was a very demanding puppy and asked to go for long walks in the park all the time.

“After Nick’s dad passed away I wanted to do something for the MND Association, for Nick and for his Dad, and to do what I could to raise funds for research.”

Júlia, who previously took part in the Swim the Solent event for the MND Association, said: “In the past I always hated running so when I told my husband I had signed up for the Royal Parks Half he thought I was either joking or I had hit my head very hard. But his support was crucial to encourage me to schedule regular runs. I then started jogging twice a week with my dog.

“All the events were amazing experiences. Sharing those moments with everyone with a cause was deeply

Imogen Wintersohl and Freya Hollingsworth

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Júlia Fàbrega

emotional. And when getting to the finish line, I felt ecstatic. I suffered excruciatingly during the run, I must admit, but I did finish it and did not stop once. I was so excited every time I would see a fellow MND Association runner and the supporters, that floods of emotions were rushing inside me during most of the race.

WO best friends were reunited at the race, after Imogen Wintersohl travelled from Germany to run with Freya Hollingsworth.

The pair ran in memory of Freya’s Gran ‘B’ who had MND and they crossed the finish line with a time of 1:50:42.

Imogen said: “I find it a very beautiful thing to race and simultaneously help people who cannot partake in such events themselves. Being able to run for them empowers me as much as it motivates me to give it my all. This way I am spreading awareness and raising money for a great cause, as much as I am challenging myself.”

The duo became best friends six years ago when Imogen and her mum stayed with Freya and her family in the UK. Imogen added: “Our mums were friends and that’s how we basically got to know each other – from that grew a wonderful friendship – one I cherish very much and I know I will have for life.”

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news Group celebrates its fifth birthday

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ongratulations to the Second Thursday Group which celebrated it’s fifth birthday in October. The group, part of our Nottinghamshire Branch first opened its doors in 2011 and currently has 18 members.

Recently, the group created a film called Walk Through The Door, to encourage those who may be recently diagnosed to join the group.

Godfrey Kent, who helped to set it up said: “Our group is a happy place and the people who feature in the video all say that.

“It is a place where people affected

by MND can come together and share experiences.”

An event was held in October to celebrate the group’s birthday, which was attended by the MND Association’s Chief Executive, Sally Light.

For more information and to see the video visit www.mnd-notts.org.uk

‘Gemma is an all and everyone

City workers urged to fight against MND

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CELEBRITY quiz night, featuring MND Association Patrons, Charlotte Hawkins and former England cricketer Chris Broad is due to be held this month.

The star-studded event is being organised by David Setters, who is living with MND, as part of his City Against MND Network, for the MND Association in collaboration with The Broad Appeal.

David, who worked in events management and publishing, was diagnosed with MND in 2012 and set-up the network to attract more funds from financial institutions in the City of London and across the UK. He said: “Like everywhere else, I imagined that a percentage of people who work in the City must have been diagnosed with MND or at least know people who have been affected.”

If you work in or around the City and would like to find out more visit www.linkedin.com/groups/8424261.

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Gemma with her boyfriend Joe

One Way or Another We’ll Beat MND

inspiration to us A she meets’

COMPLETE signed set of Phil Collins’ back catalogue was among the lots auctioned off at a fundraising event in Hampshire.

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EFORE being diagnosed with MND aged just 29, Gemma Middleton loved to run.

She had taken part in a marathon and could even figure skate.

She graduated from university with a first class degree in Environmental Consultancy and Project Management and works as a Senior Environmental Consultant. Then things suddenly began to change.

Gemma, who lives in Cambridgeshire, said: “My first symptom was slurred speech and it felt like I really had to think to get my words to come out. I had no idea what it was.

“We were all so shocked when she told us about it, but we knew we wanted to join her fight.”

“In February or March last year I noticed my right leg wasn’t working properly and my foot would feel as though it was ‘dropping’ to the ground as I walked.

“I went to the doctor when other people commented on my speech sounding slow and slurred.

“My GP sent me to a speech and language therapist and they didn’t do much so I went back to my GP on two more occasions for some blood tests.”

More tests, including a CT scan followed, before finally in June, she was diagnosed with MND. She said: “I had no idea what MND was until I researched it some more.

“At the time, I showed no emotion, it wasn’t until I researched it on the MND Association’s website and forum that it really hit me.

“MND mainly affects my speech and walking – more so when I’m tired.

“People can understand me but I sound a bit drunk! Walking is tiring and I usually have to link arms with someone so I don’t fall; I’ve had three falls so far already.”

Supporting Gemma every step of the way has been her family – mum and dad, Sharon and Nigel, brother, Craig, partner Joe and her beloved friends all of whom have taken part in a number of fundraising events to raise money for the MND Association through her Fightback Fund.

One of her friends, Gemma Wilson said: “When Gemma was diagnosed with MND we had no idea what it was, although we’d heard about it.

“We were all so shocked when she told us, but we knew we wanted to join her fight.

“We are a close knit group of friends and have known each other for about ten years now.

“So far our TogetherWeCan JustGiving page has raised over £14,000 through walks, runs, bike rides and quizzes.

“We’re always planning our next fundraising event so there’s always something in the pipeline.

“An incredible £10,500 was raised in one night for the MND Association.”

Organised by Lee Millard, who is living with MND, the One Way or Another We’ll Beat MND event raised £10,500 for the MND Association.

Lee said: “On the night, we had a most magnificent evening and the glorious weather made for a great time for all.

“The band, the Sid James Experience, played two brilliant sets with an auction in the break.

“An incredible £10,500 was raised in one night for the MND Association and all the money has gone to providing vital support for people with MND and their families.

“My thanks go to Jon Coles, the Sid James Experience, Steve Shaw, my wife Jean, our son Howard all my sponsors and all those who attended, bid and donated.”

First Kennedy’s Disease Day to be held

A Gemma with her friends

“We don’t know how we could have handled a diagnosis of MND, but Gemma has been so positive and courageous. She’s an inspiration to all of us and everyone she meets.”

If you are living with MND and would like more information about setting up a Fightback Fund, please visit www. mndassociation.org/fightbackfunds Alternatively, please call 01604 611864.

N event which aims to explain more about Kennedy’s disease is being held in March.

Organised by University College London’s Institute of Neurology the event is being held at the Radisson Blu Hotel at East Midlands Airport on 24 March.

The event will include information about what Kennedy’s disease is, as well as talks from key health professionals and researchers.

Campaigner Katy Styles, whose husband Mark has Kennedy’s disease, will also speak on behalf of the MND Association. Kennedy’s disease is a rare disorder of the motor neurones and is included in the conditions supported by the MND Association.

For more information about the event contact Debbie Hadley on d.hadley@ucl.ac.uk www.mndassociation.org

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fundraising

NEW YEAR: new challenge

If you have been inspired by the stories you have read in this edition of Thumb Print, why not kick off the New Year with a pledge to raise money and join the fight against MND? We’ve got ideas to take you right through from January to December. Whether you want to get sweaty and complete a physical challenge, or simply eat cake with friends and family, there’s something to suit everyone.

January

Challenge yourself Sign up for a virtual race. Run, swim, cycle, walk, dance or skate whenever or wherever suits you.

May

February

March

Get quizzical!

Go Gung Ho!

Easter Egg hunt

Test your trivia and hold a quiz to raise money for people affected by MND.

Recruit friends, family and colleagues to sign up for Gung Ho! The 5k inflatable obstacle course takes place across the UK from March to June.

There’s nothing children like more than a treasure hunt and when there’s chocolate involved, even better!

June

July

Snowdon by Night – 20 May

Bring out the blue (and orange!)

Prudential Ride London Surrey 100 – 30 July

Challenge yourself to climb the highest mountain in Wales... by night.

June is MND Awareness Month, and Global Awareness Day is on 21 June, perfect timing for a dress down day.

Join 27,000 cyclists on the route made famous by the London 2012 Olympics.

September

April

October

Great North Run

Silence Speaks

Whether you’re an experienced runner or have recently caught the running bug, you won’t want to miss out on an opportunity to take part in the world’s biggest half marathon.

Take part in Silence Speaks and lose your voice to help others be heard.

November

August

Walk to d’feet* MND Dust off your walking boots, get family and friends together and Walk to d’feet* MND.

December

Sahara Trek – 2-7 November

Bakeit! for a Christmas cake sale

Head to Morocco for a four-day trek through the breathtaking Sahara desert.

Get in the mood for Christmas with a festive Bakeit! Enjoy with good company and your favourite Christmas tunes!

For more information about the events above call 01604 611860, email fundraising@mndassociation.org or visit www.mndassociation.org/fundraising.

Your fundraising journey starts here with #TeamMND! Don’t miss the latest Events Diary which you will find enclosed with your copy of Thumb Print.

With even more ideas and events to suit all ages and abilities, from a variety of runs and walks and tougher challenges across the UK and abroad.

Last year our fundraisers raised an incredible £4 million for the Association to help those affected by MND, their families and carers – together we can raise even more in 2017.

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Our visio n a world free from MND

THANKS TO our #Team

for being

None of

MND sup

por

ters part of our fight for a world free our work from MND would be . possible without you!

branches and groups In the driving seat A Ford Model T was just one of the attractions at a summer fayre and car show held in Westmeston, East Sussex in August.

Organised by the East Sussex branch, the fayre also featured homemade cakes, a bottle tombola, raffle, a Christmas stall and massage and reflexology treatments.

The event raised more than £3,200 for the Association

Bowls players show their support Eighty bowls players wore MND Association T-shirts to take part in a charity tournament in Merseyside in September.

More than £2,000 was raised at the event, which was organised by Wirrall Group committee member Ian Mitchell and his wife Linda, who sadly died the day after.

Chair, Peter Dodd, said it had been the largest amount of money the group had ever raised.

Festive favourites raise £500 Christmas cards, gifts and Christmas puddings were just some of the festive treats on offer when the East Surrey Branch took part in a Christmas Fair in Banstead in October.

Alongside 20 other charities, volunteers from the branch raised over £500 to support local people living with MND. Branch Chair, Simon Edmands said: “This is always our first Christmas Fair of the season and it’s nearly always our most successful.”

The Stig meets branch members The Stig, formerly of BBC’s Top Gear programme stopped by to meet members of the MND Association’s Yorkshire Dales Branch at the Ripon Old Cars Classic Gathering in July.

Peter and Margaret Thompson who are the branch’s chairman and branch contact had their picture taken with The Stig, who gave a thumbs up as he left.

The event raised £6,000 for the branch as well as generating awareness.

Kerena Justice, left, and Margaret Metcalfe pictured at the Banstead Christmas Fair

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news

Taking steps to d’feet MND

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T has been a marvellous year for our Walk to d’feet* MND events! Walking is the second most popular fundraising activity in the UK and thousands of you walked or wheeled all over the country, covering thousands of miles to raise huge amounts of funds and awareness.

Our branches and groups, from Tyne & Wear to Surrey, invited local supporters and volunteers to join their events.

The East London Group held it’s very first Walk to d’feet* MND at Valentines Park in Ilford raising over £5,000.

Jackie Shafier, who organised the event, said: “No-one was more surprised and pleased than me and I found organising the walk a very rewarding experience. I received lots of help from the Community Team and my Regional Fundraiser which made planning much easier and we’ll be doing it all again next year as the funds we raised were amazing.”

Many of those taking part in Walk to d’feet* MND chose iconic locations for the events; from Blenheim Palace to Badminton Estate and the Humber Bridge, to raise the most awareness, while some had seaside locations.

Two walks, one on the UK’s east coast (Morcombe Bay)

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and one on the west coast (Lindisfarne), took place on tidal beaches. Walkers got their feet wet across the causeways at low tide, making them our first ever underwater Walk to d’feet* MND events.

Get family, friends, colleagues and your local community together in 2017 and you too can Walk to d’feet* MND. To register and receive your team leader pack, or search for a walk in your area visit www.mndassociation.org/walk-to-dfeet or to talk through ideas, contact Anita Solan, Community Fundraiser on 01604 611832 or anita.solan@ mndassociation.org

*Walk to d’feet MND is a Trademark of The ALS Association and is used with permission. All rights reserved.

Thank you to all our branches, groups and everybody else who has organised a Walk to d’feet*MND this year.

www.mndassociation.org

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news

In memory of a ‘kind and gentle man’

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NSPIRED by Sid Watts, a neighbour who sadly lost his battle with MND in 2015, David Morgan took part in a 310-mile cycle ride from London to Newcastle in August.

Pedalling day and night, David, completed the challenge in 27 hours, raising more than £3,000 for the MND Association, half of which will be donated to the Mid-Kent Branch.

He said: “Sid was a very kind and gentle man, with a great sense of humour and friendly smile for everyone, so it seemed cruel that he suffered from this terrible condition.

“Being a keen cyclist, I decided to enter an event way beyond my previous experience and take the opportunity of raising money for charity at the same time.

“Due to the support given to Sid by the MND Association, it was an easy decision to choose this good cause.

“I really hope that the money raised will make a real difference to other people who are living with MND and the families and friends who support and care for them.”

You can read more about David’s challenge and make a donation by visiting www.justgiving.com/David-Morgan36.

For people with MND who climb their own ‘Everest’ every day

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HEN Paul Wenham heard someone living with MND describe it as ‘choosing to climb Mount Everest every day’ he became inspired to take part in a challenge of his own.

In August Paul ran 62 miles along the south coast from Eastbourne in East Sussex to Arundel in West Sussex, taking 13 hours and 14 minutes.

Paul’s father, Michael, has Primary Lateral Scelrosis (PLS) a rare form of MND and is cared for by his wife, Jane. They are both members of the MND Association’s Oxfordshire Branch.

Paul said: “As I pounded the lanes of East Sussex, I thought of the effort it takes Dad to get up from his chair and make his way to the table, of the painful stretches he has to go through each morning with

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Michael with his wife Jane and Paul at the finish line

Mum and the hundreds of everyday mini-Everest decisions he makes to shift, move, lift, speak and live that I so easily take for granted.

“As my skinny, but healthy, legs slogged

their merry way along the route I often thought of Dad and his daily ‘Everests’, of Mum as she gives so much of herself day after day, caring for Dad, of their shared persistence and courage.

“The run was utterly exhausting, very hot and very hilly, but it was made worthwhile with Mum and Dad at the finish line.

“It left me with sore feet, but I am really glad we were able to raise £2,500 for the MND Association’s Oxfordshire branch for all they do.”

Michael said: “I’m very proud of all my children and I am inordinately proud of Paul. We were able to see him at two rest points and pick him up at the end looking pretty worn out.”

For the latest news from the MND Association’s branches and groups turn to page 29.

fundraising

Fundraisers remember Gordon

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HEN it comes to holding a good party Gordon Cooney and his wife Gill were always the perfect hosts.

Gordon, who was diagnosed with MND two years ago, and Gill were never happier than when their home was filled with the laughter of friends and family enjoying themselves. Over the years their parties became well-known in their home town of Barrow-in-Furness, Cumbria.

It was this love of life and positive outlook that led them to raise thousands of pounds for the MND Association and also encouraged them to host an orangethemed party in

August, just days before Gordon sadly lost his battle with MND. Gill explained: “Gordon was diagnosed with MND two years ago and he always said he wished he knew when he was going to die as he wanted to hold one last party and get everyone together.

“He was the life and soul of any party and as it turned out he died very peacefully just a few days later.”

She said that Gordon had been something of celebrity in their community through his work as a driving instructor and as a musician in local bands.

She said: “He had a powered wheelchair and would love to go out and about.

“He would often be out for more than an hour as so many people would

Gordon pictured with Mathew Robson and Dan Hayes who have vowed to continue fundraising in his memory

stop and chat to him. That’s just the sort of person he was.”

She said that fundraising for the MND Association was continuing in his memory with more events planned over the coming months.

Gordon Cooney

Our vision could be your legacy We rely on voluntary donations of which legacies are a vital source, accounting for almost a third of our total income over the last decade.

Without legacies, we could not maintain the same high level of investment in research or the breadth and quality of our care and support services.

So we are asking for your help, to ensure we can continue our fight against MND, by leaving a legacy to the MND Association in your Will.

For more information and to request your Legacy Information Pack, please visit: www.mndassociation.org/legacies.

Alternatively, call Stephen May on 01604 611865 or email legacies@mndassociation.org.

Please remember people with MND in your Will.

www.mndassociation.org

Registered Charity No. 294354

If we are to achieve our vision of a world free from MND, while also providing the best possible care and support for people affected by this cruel disease, then we must continue to raise the substantial income to meet the costs involved.

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Pedal power raises thousands Picture courtesy of The Lynn News

Cyclists from across England, Wales and Northern Ireland have taken to their bikes to raise thousands of pounds for The MND Association.

Here we share some of their stories.

Top left to right: Josie Wade arrives in Paris, the annual Bike for Brian event which took place in Watlington near Kings Lynn, bottom left to right: The team who took part in the Malin to Mizen challenge, Richard Brailsford and Steve Jackson, Suzanne Chamberlin, and Jenny Higgins, £5,500 was raised for the MND Association in memory of Sue Coleman

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A

A

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ARIS was the destination for clinical dietitian Josie Wade, who raised almost £2,000 for the MND Association by taking part in a London to Paris bike ride in September.

Josie, who sadly lost her Uncle Peter to MND described the ride as ‘amazing.’

She said: “When we got to the Eiffel Tower I was so emotional, but not because I’d made it, I didn’t want it to end!

“The MND Association has been a constant force for good, both in terms of financing individual needs but also for support. Anything I can do to promote and support this service is time well-invested.”

GROUP of 75 cyclists took part in a cycling event organised by the MND Association’s Kings Lynn Group.

Called Bike for Brian, the eight-mile event is organised in memory of Brian Smith who sadly died recently. Brian had spent many years raising money for a number of neurological charities and raised £17,000 over the past 15 years.

The ride started and ended at The Angel, Watlington near Kings Lynn, where those taking part enjoyed a barbecue and a raffle.

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group of ten riders took part in a cycle ride from Malin to Mizen in the Republic of Ireland.

Andy Kane, Wolfgang Martini, David Pratt, Rob Skingley, Adrian Burgess, Steve Goulding, Brian Lewis, Chris Cullen, Simon Pendreich and Andi Turner cycled 482 miles in just five days raising more than £27,690. Three of the group have been affected by MND. One of the support team, Nicola Pendreich said: “It was a real challenge at times as the weather was much warmer than had been expected. We saw Ireland at its best and were made very welcome.”

FTER months of hard training, Richard Brailsford, accompanied by his friend, Steve Jackson took part in an off-road London to Brighton cycle.

Despite crashes, injuries and broken bikes, Richard raised more than £1,000 for the MND Association in memory of his Dad, who died from MND. He said: “My Dad went through more pain than this so I had to do everything I could to last the distance. Until there is a cure I’ll do all I can.

It’s unfinished business for all of us who have been affected.” cycle ride in memory of Sue Coleman who sadly died from MND has raised £5,500 for the MND Association. The ride from Ilfracombe to Exmouth was organised

by Sue’s husband, Peter and members of Unity Lodge, Crediton and raised £11,000 which was split between Hospiscare and the MND Association.

Cynthia Hopkin from the Exeter and East Devon Branch received the £5,500 cheque on behalf of the MND Association. uzanne Chamberlin, and Jenny Higgins, took on the Sky Ride charity cycle and raised over £550 in memory of her mum, Joy, who died from MND. Suzanne said: “The bike ride went really well and the weather turned out to be lovely and hot.

“I wanted to raise money to help fund research into a cure for this cruel disease so that one day other people will not suffer the way my beautiful brave mum did.”

Suzanne’s employer Archant has also agreed to double her donation.

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Tee off for MND

Golfers across the country have been teeing off to raise money for the MND Association. Here we share some of their stories.

“In December 2015, my brother had an annoying muscle spasm in his left arm. That spasm was the first sign he had motor neurone disease. Now he is unable to work or drive and his mobility is already seriously affected.”

Above: A golf day was held in memory of Andy Nickels, top right: Chris Hoggarth, bottom right Helen Oakes and her family

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olfers from across England have been teeing off to raise money for the MND Association.

A golfer from Colchester was up bright and early on the longest day of the year to take part in a six round, 108 hole challenge to raise money for the MND Association.

Chris Hoggarth, whose brother Steven is living with MND, raised more than £3,000 for the MND Association’s Colchester and North East Essex Branch by getting sponsored to play from dawn until dusk on June 21.

There was also a sweepstake in the Pro Shop to guess to the number of Stableford Points, which was won by Mandy Byham.

During the challenge, which took place at the Stoke-by-Nayland Golf Club, Chris played six rounds of golf, played 108 holes and walked over 30 miles between 4.30am and 8pm.

He said: “In December 2015, my brother had an annoying muscle spasm in his left arm. That spasm was the first sign he had motor neurone disease. Now he is unable to work or drive and his mobility is already seriously affected.

“Thank you to the golf club for their support on the day and for allowing me to take on the challenge, my team of caddies who drove the support buggy and kept me fed, watered and sane, the few members who played late and allowed me to play through and everyone who has sponsored me or had a guess on the sweepstake.” tribute weekend was held in memory of Andy Nickels which included a fun day, organised by Lisa Tapp, landlady of Northampton’s Crown and Cushion pub and a charity golf day.

The golf day was organised by Steve Burditt, a former colleague of Andy’s at Steele and Bray, and raised more than £700, while the fun day raised over £1,500.

In addition, Andy’s son, Ben, has also raised more than £3,500 by taking part in two runs in Spain.

The Andy Nickels Tribute Fund currently stands at more than £7,000.

AN Simpson and Peter Stancliffe from the No Limits Health Club in Alnwick held a golf day at Alnmouth Golf Club raising over £2,000 while Helen Oakes and

her family held their sixth annual golf day in memory of her husband Michael.

The family raised almost £2,700 at the event, which included a raffle and silent auction.

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Ian Simpson and Peter Stancliffe, pictured with ex-golf professional Peter Deeble who is living with MND

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news

Thank you...

Share your pictures at www.facebook.com/mndassociation

Marathon effort: Becky Woolley took part in the Marathon du Medoc in France alongside her sister, Soph, boyfriend Miles, brother-in-law Ben and friends Fab and Pedro in memory of her best friend’s husband Steve Burns who sadly died from MND. Wine and fine foods are served at each mile and Becky finished in just over six hours. The team raised more than £1,600 for the MND Association.

Colleagues pull together: On 29 August employees of insurance company LV rallied together to form two teams of 20 people. Each team attempted to pull a Boeing 737 weighing 35,000kg, 50 metres down the runway at Bournemouth airport in the quickest time possible. Their fantastic effort has raised over £1,700 for the local East Dorset branch, in honour of a colleague who has recently been diagnosed. The donation will be matched with a further donation from LV.

A family affair: The Creaser family took part in the Lichfield 10k for their dad and grandad Ian Creaser who is living with MND. Team Creaser raised a whopping £1,320.

Hair-raising!: Nine year old Ellie Burgess has raised almost £800 in sponsorship by cutting her lovely long hair.

Her mum Karen posted a video online of the haircut which received over 6,000 views and really boosted her sponsorship. Ellie even donated her locks to the Little Princesses Trust, a charity which creates wigs for children with cancer. Well done Ellie!

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First class: Pupils from Bedford Preparatory School raised £1,584 for the MND Association.

Headmaster Ian Silk handed over the cheque to Rita Beaumont from the MND Association’s North Bedfordshire Group when she took part in an assembly on October 3.

A day of fundraising: Dawn Wilson, pictured here with her mum, held a day of fundraising at Thirkleby Hall Caravan Park, North Yorkshire, in memory of her uncle Clive Jameson. Dawn said: “After the event I cried with the relief! I was so pleased everything went well and I knew we had raised a good amount, but it wasn’t until I counted up the money that I realised just how much. It was such a good feeling. My family all said they were so proud of me, and that my uncle would have been so proud too.” The event raised £1,600.

Climb every mountain: Jorja Rees, Elleanor Chadbourne, Francesca Boyer, Natasha Boyer and Sarah Malen, who are all aged between ten and eleven decided to raise money for two charities close to their hearts; the MND Association and Cancer Research UK. They explored various options and decided to climb Mount Snowdon on 12 June raising over £800 for each charity.

Friends Fight Together: When Joanne Deeley was diagnosed with MND aged 44, she decided to set up Jo’s MND Fightback Fund and was delighted when a team of her friends and family, nicknamed Jo’s Angels, took part in a 10K run and raised almost £1,500. In another show of support her friend Kelly Brailey, who is pictured here with Jo, organised a charity night at a local tapas bar which raised a further £820.

An emotional journey: A 725-mile walk from Switzerland to Rome has raised more than £8,000 for the MND Association. Mike Fitzgerald who has taken part in several fundraising events over the years decided to take part in the challenge in memory of his brother Barry, who was diagnosed with MND several years ago and died a year later. Mike said: “It was hard going but with so much support I kept going. Reaching Rome was emotional but I’m sure the fundraising will keep the research going and eventually find a cure.”

‘For Grandad’: A summer of running has raised over £550 for the MND Association. Emma Shepherd and her son, Jack, who is seven, have taken part in various running events in memory of her father, Alan Gibbons, who lost his battle with MND ten years ago.

She said: “Losing him was devastating, but at least I got 31 years with him and he had a massive impact on who I am, for which I will always be grateful.

However, because of MND, Jack never got to meet his Grandad which, in his words, ‘sucks.’”

Friends united: Two best friends who sadly lost close family members to MND, raised over £8,000 at a charity ball held in Hitchin in June. Lucy Hedley and Sophie Hoppenbrouwers held the event, which included a champagne reception, three course meal, a raffle and an auction, at the Princess Helena College in Hitchin. Lucy and Sophie said: “Although we are obviously really pleased with the money raised, we are also very happy with the awareness we have spread in our local area.”

Serving up a donation: A barbecue and fun day organised by Lynda Brudenell raised more than £1,000 for the MND Association. Lynda said: “Everyone was so kind and generous. We had some fantastic raffle prizes, a fruit and veg company donated all the salad bits and other companies supplied the food at cost price.”

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your voice If you have something you would like to share with other members of our MND family, we would love to hear from you.

Letters, which must include your full address, can be sent to Your Voice, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email at editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.

Do you have a story to tell?

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OME of you may remember the article which featured in the spring edition of Thumb Print which talked about my digital legacy project.

The focus is on people with MND recording short videos to be given to a child or young person in their family for use in the future.

Over the past few months, I have spoken to a number of people who have recorded a video legacy in various forms such as personal childhood memories, messages of guidance, or, the telling of a child’s story.

I am interested in the experience of creating a video legacy and am looking to hear from people who are willing to take part in an interview.

I am also looking to speak to bereaved young people between the ages of 11-24 about their experiences of using videos

diary dates Regional conference, Taunton, Devon 11 March 2017 Silverstone Half Marathon 12 March 2017 Brighton Marathon 9 April 2017 London Marathon 23 April 2017 Regional conference, Liverpool 6 May 2017 MND Awareness Month June Nightrider London 10-11 June 2017 Annual conference and AGM 8 July 2017 Silence Speaks October

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after someone in their family has passed away from MND. These videos could be things like home movies of special family occasions, or, videos that were purposefully recorded for the young person. My project is moving into its final year and while I have spoken to a number of people across England, I would really like to hear from more.

If you are living with MND and have recorded a video legacy for a child in your family and would be willing to take part in an interview, please get in touch.

Alternatively, if you are a bereaved young person aged between 11-24 and sometimes use videos for support, I would love to hear from you.

Email me at clabburo@edgehill.ac.uk or telephone 01695 654316.

Olly Clabburn, via email

#CrowdeysLegacy lives on

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Y husband, Paul Crowdey, lost his battle with MND in September. Many of you will know him through his blog at www. paulcrowdey.wordpress.com but he Gill with pic and was also a passionate fundraiser social networker.

Within his blog he openly shared his thoughts and opinions on so many things, from his diagnosis, to how much he missed his mum, who also died from MND. Determined to raise awareness, Paul also shared his story with local media in Lincolnshire and the reaction to his death says a lot about the kind of person he was.

His followers on social media made donations to the MND Association through his JustGiving page and we were inundated with messages of support, which we were so grateful to receive. #TeamMND runners have dedicated their races to Paul, renewing their pledge

Left to right: Georgina Crowdey, Paul Crowdey, Julia Beales, Kevin Scott, Infinis, Anita Solan, Association fundraiser

to continue the fight to find a cure.

Paul inspired so many people to join the fight against MND. Thanks to him so many more people know about the disease and will benefit thanks to the ÂŁ21,000 that has been raised for the MND Association in his honour.

His legacy will live on.

Georgina Crowdey, via email

about us:

My thoughts

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HIS poem, written by Stephen Bluff who is living with MND, was read at an event to celebrate the fifth birthday of the Second Thursday Group in Nottinghamshire. You can read more about their celebrations on page 26.

My mirror sees me every day, it watches how I change, it watches facial features, which to me remain the same.

If my mirror could save images and record what it had seen, I could then evaluate the changes there have been.

It is my body movements that give the game away, strength declining gradually, as muscles fade away.

I sometimes feel emotions which tend to get me down, they make me disillusioned, and at times they make me frown.

Sometimes I’m grumpy, abrupt and somewhat rude. Frustration changing

character by fluctuating mood.

MND picks anyone, and it has chosen me, how long I will endure it only time itself will see.

I don’t know when or why my symptoms did first start. I know it started gradually and breaks the toughest heart.

I keep on being positive, no matter how I feel, negativity is common but that does not help, nor heal.

This is an illness where nature guides the course, changing the lives of everyone from how it was before!

Stephen Bluff, via email

The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society.

As a charity we rely on voluntary donations. Our vision is a world free from MND.

Website www.mndassociation.org

Social media

It’s a new year and a new challenge for Bare Legs Brian!

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NEW year means a new fundraising challenge for Brian Jackson, who will spend the whole of 2017 baring his legs in a tartan kilt.

Brian, from Sheffield, who lost his wife Christine to MND in 2012, is no stranger to baring his legs to the elements having worn shorts for the whole of 2015, raising £11,000 in the process.

This year, Brian, also known as Bare Legs Brian, will be wearing a kilt made out of Sheffield Tartan thanks to support from the City of Sheffield Pipe Band and Yorkshire Kilts.

Once again he will be raising money for the MND Association in memory of Christine and Gavin Nicol, a member of the City of Sheffield Pipe Band who also lost his battle with MND in 2012.

Brian said: “I took 2016 off from fundraising as you tend to go to the same people for money including family and friends.

“During 2016 someone suggested that I could wear a tutu and I said, ‘No way!’ but I started thinking about doing something for next year and the skirt idea must have stuck because I decided to wear a kilt.”

During a meeting of the South Yorkshire Branch of the MND Association, it was suggested he could wear Sheffield tartan.

He said: “The tartan is black because

Online forum A place for people affected by MND to share experiences and support each other. http://forum.mndassociation.org Facebook www.facebook.com/ mndassociation Twitter @mndassoc

MND Connect

Brian wearing his kilt at the launch of his latest challenge

of the coal, grey because of the steel, red because of the furnaces and blue and green because they are the colours of the city.

“It is worn by the Sheffield Pipe Band and when I approached them they told me about one of their respected band members, Gavin, who also died from MND. They also very kindly agreed to pay for the material for the kilt. My thanks also go to Yorkshire Kilts of Huddersfield who helped considerably with the cost of making the kilt.”

Brian’s challenge started on 1 January and will run until 31 December. Keep up to date with all the latest news on Twitter and Facebook by searching for Bare Legs Brian.

You can also donate by visiting www.justgiving.com/BareLegsBrian

Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations.

Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 8026262

mndconnect@mndassociation.org

Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org

get involved: telephone: 01604 250505 website: www.mndassociation.org email: enquiries@mndassociation.org www.mndassociation.org

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