Thumb Print - Summer 2015

The magazine of the Motor Neurone Disease Association

Summer 2015

We did it!

MND team celebrate as

Charter target is smashed

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4

MND Awareness Month Our biggest campaign yet.

11

Understanding the election result

An easy to read guide about changes that may affect you.

12

33,630 reasons to feel proud

Delivering our Charter to Downing Street.

18

If you want to come home Issues faced for those moving back to the UK from overseas.

20

Support for care workers Care workers can now access a free Level 2 online learning module about MND.

28

Switching onto volunteering

Using digital skills to provide greater support for those with MND.

34

Going the extra mile

A tribute to those taking part in running events and marathons Cover: Charlotte Hawkins, TV Presenter and Association patron, Liam Dwyer, MND Association campaigns volunteer and Chief Executive Sally Light pictured prior to handing in the Charter at 10 Downing Street last month.

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: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org

welcome‌

One of the greatest joys of my job is hearing about all the wonderful work which is being done in each of the three nations to support people living with MND. I feel proud, and have an overwhelming sense of gratitude, when I hear about the tremendous efforts of our supporters, who often go to extraordinary lengths to make a difference.

For people living with MND your efforts mean everything.

At a time when it is easy to feel lost or that nobody understands, your incredible achievements offer hope, a lifeline – a sense that somebody is on their side. That they are not alone.

In June, I had the great privilege of joining a group of people living with MND, together with our supporters and campaigners at 10 Downing Street where we handed in our five point MND Charter containing more than 33,000 signatures.

It was the culmination of three years work on behalf of our Campaigns Team, Campaigns Champions and loyal supporters who worked tirelessly to collect signatures and encourage decision-makers to acknowledge their responsibilities towards people with MND. We are now able to push forward with the next stage of our campaign which will see the MND Charter being adopted at a local level.

June also saw us launch our annual Awareness Month campaign Last Summer along with Silence Speaks, our new annual fundraiser which I know many of you have already taken part in.

Thanks to all of your tremendous efforts, together with the Ice Bucket Challenge, the global success of The Theory of Everything and story lines on prime-time TV shows such as DIY SOS, Casualty and Hollyoaks, awareness of MND has never been greater.

Our challenge now is to keep this momentum going to ensure we continue to improve the lives of those who are living with MND, as well as offering better support to their loved ones and carers.

I have never felt more confident that we can.

Thumb Print is available as a pdf at www.mndassociation.org/ membership 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.

Sally Light Chief Executive

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awareness month

word

Spreading the A big thank you to everyone who supported our Awareness Month in June.

Over 1,050 posters ran across the National Rail network including the London Underground.

This year we also displayed our posters on buses in Northern Ireland and at George Best Belfast City Airport.

This year we built on the success of the Ice Bucket Challenge last summer.

The posters also Belfast City Airport shared the impact of living with motor neurone disease, as well as reinforcing some key messages about MND. One of our poster stars, Ailsa from Manchester said: “When I was diagnosed with MND in the summer of 2013, it felt like my world had fallen in. Last summer the Ice Bucket Challenge made it feel like the world was with me.”

Meanwhile, Michael from Manchester said: “Last summer, I was the only person I knew who didn’t do the Ice Bucket Challenge. Five months later I was diagnosed with motor neurone disease.”

A third design featured a weathered bucket and plastic garden chair. It recognised the difference the challenge made in terms of greater understanding of MND as well as acting as a poignant reminder that for many people with MND summer 2014 was their last.

Chris James, Director of External Affairs said: “People living with MND are at the heart of everything we do. We heard Michael’s story - that he was too busy

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getting married last August to do the Ice Bucket Challenge and was then diagnosed with MND – and thought it was powerful and poignant.

Michael, and his family, were keen to share it too with as wide an audience as possible.

“Meanwhile a 60 second advertisement for the Association reflecting back on last summer was also screened across Pearl and Dean cinemas throughout June reaching 1.5 million people.

The council building in Derry, Northern Ireland turned blue for MND Global Awareness Day on 21 June and the Spinnaker Tower in Portsmouth was also lit up.

In the media, coverage included features in regional and national publications; from Glamour magazine to The Guardian. Meanwhile our patron Good Morning Britain’s Charlotte Hawkins, was interviewed on This Morning the same day we handed in our MND Charter to Number 10 Downing Street.

Sally Light, our Chief Executive said: “I cannot thank Ailsa and Michael enough for their time in supporting us and in sharing their personal stories so visibly.

It’s always hard to imagine how we will top our Awareness Month year on year but we’ve done it again. It’s been a great month and one when we have built on the improved awareness gained initially through the Ice Bucket Challenge last year”

“It’s been a great month and one when we have built on the improved awareness gained initially through the Ice Bucket Challenge.”

The production crew shooting our ‘Last Summer’ advertisement

awareness month

ptionist Teresa, rece

Zoë Ball

Marie Holm es

Shhhh...

Marie Holmes from our Northern Ireland Branch, explained why she and her friend Abby Diamond got involved: “My husband George died from MND four and half years ago, and one of his biggest fears, as a former English teacher, was being unable to communicate. I decided to challenge Team Maureen myself to an hour’s silence each day for the month of June as part of the Silence Speaks campaign but I wasn’t allowed to just stay at home.

“Every day I had to be somewhere among other people; walking, shopping, etc. This meant I had to use other methods

BE ompson O nni Grey-Th Baroness Ta

“I decided to challenge myself to an hour’s silence each day for the month of June as part of the Silence Speaks campaign.”

of communication and as a result, was able to raise awareness of MND”.

Many celebrities, staff members and volunteers got involved, including our bubbly receptionist at David Niven House. Teresa was silent for eight hours, except when answering the phone and commented afterwards: “It felt so isolating and it was interesting that some staff whispered or mimed words when wanting to communicate with me.”

For some, Silence Speaks was an opportunity to provide a personal tribute.

Hayley Ladbrook was silent for five days in support of her dad Robert, diagnosed with MND in 2007. For Team Maureen, Sally Roberts and Lynn Baxter lost their voices for a whole week to support their friend Maureen Carson, diagnosed two years ago.

So to everyone that got involved in Silence Speaks, whether you were silent at work, at home, with friends or family; whether you set fines, played charades or were nominated by others to lose your voice, the Association would like to say a huge THANK YOU. We can’t wait to see what you come up with next year!

Hayley La dbrook

Throughout June Silence Speaks, our new annual fundraising activity, encouraged hundreds of people to lose their voice and find other ways to communicate. It not only helped raise vital funds but also awareness of how difficult it is to live with impaired or no speech.

Jimmy Ca rr

www.mndassociation.org/silencespeaks

Read more about Team Maureen at: https://www.facebook.com/ mndassociation/videos/ 922365434524560/ https://teammaureen2015.wordpress. com/2015/06/07/day-7-of-the-silentchallenge/

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news Garden takes silver medal at Chelsea A garden created for the Association by one of its founder members won a silver medal at the RHS Chelsea Flower Show in May. The Old Forge was created by Martin Anderson MBE and Jodie Fedorko, who was debuting her first garden at the age of 22, just two years after graduating from Riseholme College, Lincoln.

HRH The Princess Royal meets campaigner, Charlie Fletcher

Volunteers celebrate success Our Royal Patron, HRH The Princess Royal, attended the Association’s Volunteering Fund Project showcased at the Royal College of Nursing in London last month.

The event celebrated the project’s achievements since 2013. Funded by the Department of Health, it aims to support work on improvements in services for people living with MND in the East of England region.

Volunteers, supporters and staff of the MND Association were in attendance

alongside national partners.

Our volunteers who work directly with people affected by MND, support them to navigate services to help ensure their specialist and complex needs are met.

Her Royal Highness also unveiled a plaque for our Investing in Volunteers Quality Standard, recognising the excellent work we do with volunteers at the MND Association.

Find out more about the work of our patrons on pages 30 and 31.

TV show makes a real difference A family who are living with the impact of MND featured in an emotional episode of DIY SOS, screened last month.

Jason Liversidge, 39, was diagnosed with MND in December 2013. The home he shares with his wife, Liz and daughters Poppy and Lilly, who are two and three, and step daughter Emily, needed to be extended to include a downstairs bedroom and wet room.

During a session with an occupational therapist at Dove House Hospice the therapist and Liz joked that they should apply to DIY SOS, so they did.

The family moved out of their home in Hull for nine days in November while the renovation was completed.

Liz said: “The work done to our home has made such a difference. The house and garden are now fully accessible for Jason.

“The doors have been widened, the floors are now level and it includes a state

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The Old Forge garden created by Martin Anderson (pictured) and Jodie Fedorko

The garden, in the Artisan Garden section, took a nostalgic look at the past when wildflowers were more common.

The forge was described as being in a state of neglect due to the blacksmith’s inability to work because he had MND. Martin was awarded an MBE for 25 years service to the charity and this was his fourth garden. In 2008 and 2013 he won gold medals as well as the prestigious BBC People’s Choice Award.

Colin stands down Poppy and Lilly ‘help’ with the build

of the art wet room.”

Jason and Liz have also shared their story of living with MND in the media as part of the MND Association’s Awareness Month, with coverage on BBC Breakfast, BBC Radio 5 Live and regional TV, radio and newspapers.

For more information about Awareness Month turn to pages 4 and 5.

Long-standing Association visitor, Colin de’Ath is stepping down from this role after 38 years.

At the time of going to press, it was announced that Colin, who is 75 and a founding member of the Association, would continue to support the East Surrey Branch with events and fundraising.

For the latest volunteering news turn to pages 27 to 29.

news Lights, camera, action A familiar face from the Association’s Awareness Month campaign is to star in TV soap Hollyoaks later this year.

Ailsa Malcolm-Hutton, who appeared on our Last Summer posters will make a cameo appearance alongside actor Jeremy Sheffield whose character, Patrick, is living with MND. Alisa said: “The whole Hollyoaks experience has been amazing. I was really really nervous but excited too about the opportunity.

“We had a tour and watched filming first before I spent a day on set filming my scene and the whole crew made me feel totally relaxed.

“Jeremy (Sheffield) was just lovely and looked after me; he made sure I didn’t get too tired. He wanted to know so much about me and MND and looked at my hands and how I can’t hold much anymore. He was focussed on making

sure he gets his portrayal of someone living with MND as accurate as possible.

“I was able to have some say on the script too – even on the day itself, so hopefully it will be fairly realistic.

“I wanted to emphasise to the character of Patrick and to everyone watching the show that MND is all about living too!”

Ailsa was diagnosed with MND just a month after her 30th birthday.

Two years on and she’s reliant on her wheelchair and has seen her world and independence shrink significantly.

“I overcame my nerves to sit on the This Morning sofa last year and tell millions what living with MND was like. This year I will be in Hollyoaks. I’m going to grab any opportunity to spread awareness with both hands and make the most of it for me and everyone else living with MND” she said.

Ailsa pictured with Hollyoaks actors Jeremy Sheffield and Jennifer Metcalfe

from our chair This time last summer, we had very little inkling of what the coming weeks would bring.

In just a few short weeks, Alun Owen the Ice Bucket Challenge pushed the work of the MND Association to the forefront of people’s minds.

As you can see in this edition of Thumb Print, we grabbed this opportunity with both hands and have used this awareness to push forward with our campaigns.

In February, the All-Party Parliamentary Group (APPG) for MND published the findings of its inquiry – Condemned to Silence – with 27 recommendations to improve access to communication for people

with MND. Charlie Fletcher fronted a major campaign Don’t Let Me Die Without a Voice leading up to the General Election in May, aimed at raising awareness of MND among parliamentary candidates standing in the election.

More than 2,200 supporters contacted their candidates, asking them to take action and 33,630 individuals and organisations signed the MND Charter, which was presented to 10 Downing Street last month.

The Charter will play a big part in our future campaigning as it will live on as a tool for influencing the quality of local services.

We will be encouraging local councils and others to ‘adopt’ the Charter and work with us to protect and improve services for people with MND locally.

Our campaigning work continues throughout the summer as the Association prepares to meet NHS England in July. We will also be using the Assembly elections in Wales and Northern Ireland in 2016 to press for further rapid access to communication assessment and equipment.

This year’s AGM and Annual Conference will take place on Saturday 12 September at the Radisson Blu Hotel at East Midlands Airport.

If you are interested in a campaigning role, or would just like the opportunity to meet people affected by MND, their families and carers, please think about attending.

Campaigning is a key tool in our fight towards a world free from MND and I look forward to meeting you at our events across the country.

Alun Owen, Chair, Board of Trustees

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Simon Bew

news

In their own words

last year having experienced symptoms for a few months.

Chloe’s mum, Lesley said, “Chris is a farmer born and bred. The first thing we noticed was that he had been walking with a limp. He was struggling to keep up with Chloe and myself.

Chloe Roberts, left, with her father Chris and sister Tamara

Dealing with MND can be a devastating experience for the whole family. Chloe Roberts and her mother, Lesley, have coped with the diagnosis of their father and husband, Chris, by putting their thoughts down on paper in very different ways.

Chloe Roberts, who has released a single to raise money for the MND Association

Singer songwriter Chloe Roberts has released a single to raise money for the MND Association.

Inspired by her father, Chris, who is living with MND, Chloe, 19, wrote Levels, which expresses her feelings about his diagnosis.

Chloe, whose father and mother, Lesley, live in Cornwall, is currently studying for a degree at the British and Irish Modern Music Institute in Brighton.

Through the release of the song, Chloe,

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who writes under her stage name, Chloe Fior, hopes to raise awareness of MND, as well as much-needed funds.

She said: “My sister, Tamara, is planning a skydive and my mother has written a blog, but I wanted to do something which reflected me.

“The lyrics for the song came very naturally and it was actually a very therapeutic process to get some of my feelings down on paper.”

Chris was diagnosed with MND in May

“In January, some sheep had managed to get out of the farm and onto the road and when Chris came back he was quite distressed. He said he had struggled to make it up the hill and that his legs had just turned to jelly.

“I made him an appointment to see his doctor and they suggested that he should go to see a neurologist. At that point, I thought it could be MND.” In the weeks that followed Chris’ diagnosis, Lesley decided that she wanted to keep a diary to ensure no parts of his journey with MND were forgotten. The diary became a blog, which can read by visiting www.soulpixie.blogspot.co.uk

“It is a very therapeutic process to be able to write everything down, but when I meet someone who has read my blog I feel very exposed.”

Lesley said: “It is a very therapeutic process to be able to write everything down, but when I meet someone who has read my blog I feel very exposed – it feels as though I am walking down the street naked. “Tamara has decided that she wants to do a skydive to raise money for the MND Association and will be taking part in Jumpfest in Perranporth.

She just decided that she wanted to jump out of a plane!

“Chloe finds it much easier to talk about her emotions through her music. We are so proud of them both.”

Levels is available to download now at iTunes, Amazon and Google Music.

news

The greatest race of their lives

When Andrew Spriggs, a keen marathon runner, was diagnosed with MND in 2011, his son Paul and nephew, Chris decided it was time for a challenge.

Determined not to let MND stop them, Chris and Paul encouraged Andrew to take part in a number of marathons – by pushing Andrew around the courses in his wheelchair. This is their story.

For Andrew’s son, Paul, spending time with his father while making modifications to his wheelchair has been a precious experience.

This year, Paul also started running with Andrew, and father and son took part in the Brighton Marathon.

In the run-up to the event, they spent many hours in Andrew’s shed ensuring his wheelchair was as comfortable

“My Uncle Andrew was a runner and, over the years, he took part in 39 marathons.

He was the reason I got into running in the first place.

“He had been experiencing symptoms from as early as Summer 2010, but he was finally diagnosed with MND in 2011. I remember sitting in bed with the duvet wrapped around me at 3am months later thinking, ‘He can’t run anymore.’

But then I thought, ‘He can still race if someone pushes him”.

It was that thought which started Chris and Andrew off on a journey which would eventually see them complete a number of events together, in spite of Andrew’s condition.

Chris, who lives with his wife and three children in Warwickshire, Chris Spriggs, with his uncle, Andrew said: “I was quite apprehensive, but I sent him an email to see what he thought. Two weeks later, he said yes.”

For Chris, the challenge was immense as he contemplated running a 26-mile marathon while pushing a fully-loaded wheelchair carrying his uncle. But he admits it was nothing compared to the personal challenge which Andrew was facing.

He said: “As a family, we knew nothing about MND and we learnt about it from meeting other people. We ended up with a constellation of stories. We all faced as possible for the challenge which lay ahead.

He said: “I was able to get plenty of tips from my cousin Chris, during our training although he is a lot fitter than me!”

Paul explained that the entire Spriggs family, including his sister Sarah, loved to run and that over the years they had raised thousands of pounds for both the MND Association and The Martlets

difficulty in knowing how to respond but you tap into some kind of inside strength which pushes you to take another step.”

Since then, Andrew and Chris have taken part in a number of running events together, including the Brighton Marathon, the Worcester Marathon and the Kenilworth Half-Marathon.

Their story has also been told in a new book called The Reason I Run: How Two Men Transformed Tragedy into the Race of their Lives, which has been written by Chris.

He explained: “I felt it was a story which should be told.

“Andrew is very positive and I have never heard him moan.

His story really shows the triumph of the human spirit.

“He can still talk and eat, although he doesn’t have a lot of strength in his arms.

He has sad days, but mentally, he is strong and very supportive of others.

“This journey with the MND community has completely changed my life.”

The Reason I Run: How Two Men Transformed Tragedy into the Race of their Lives is available from Amazon, Waterstones or the publishers, Summersdale and costs £8.99.

A donation from proceeds will go to the MND Association.

Hospice in Hove.

Chris added: “Dad has demonstrated that even facing the hurricane of motor neurone disease when life can be devastating, sad and unfair, with resilience, sacrifice and even joy we can choose our response.”

To read more about the success of our marathon runners turn to pages 34 and 35.

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news

Apprentices show everyone who’s boss with icy challenge

Brendan Bell

Amy and Zoe, who have themselves Who could forget the phenomenal success organised events that have raised of the Ice Bucket Challenge last summer? thousands of pounds for the branch, For a group of apprentices from Ealing came along to shake a bucket, as did Lyn Council in London, the memories of Marriott, another brilliant branch volunteer.

Summer 2014 came flooding back as In total, the apprentices raised a they decided to take in the Ice Bucket fantastic Challenge to £2,381, more raise money than double for the West their original London and £1,000 target, Middlesex as well, of Branch of the course, as Association. plenty of But instead awareness of taking about MND. part in the Branch challenge chair Janis on a balmy Parks, who summer day, was invited the group to tell the decided to Left to right: Zoe and Amy Kyriacou and Lyn Marriott apprentices mark National about MND and the Association’s work, Apprentices Day by tipping a bucket of said: “I was very impressed by the level ice cold water over the heads – in a bitter of interest the apprentices showed; March wind. their engagement, compassion and The event was organised by Suzanna commitment – they asked some excellent Lovell, whose friends Amy and Zoe questions. I’m not surprised they beat Kyriacou had recently lost their mother their target and was pleased to hear, to MND. when I collected the cheque, how much The group set-up stalls outside Ealing they felt they had learned from their Town Hall and also sold home-made cakes challenge.” and other goodies.

Tribute to Sir Chris Woodhead It is with great sadness that we share the news that our Patron, the educationalist Sir Chris Woodhead has sadly died.

Sir Chris had been living with MND since his diagnosis in 2006, and earlier this year also announced that he had liver cancer.

Throughout his years with MND, Sir Chris spoke with courage about the disease and how it affected his life, conducting radio and TV interviews which all helped raise understanding and awareness.

The MND Association’s first involvement with Sir Chris was in 2009 when he supported our awareness raising campaign Sarah’s Story and his support increased from that point. He was especially active around our call for

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a national strategy for MND; generating signatures showing support, delivering petitions to 10 Downing Street, undertaking interviews on Radio 4 and speaking on our behalf at a reception in the House of Commons.

In September 2010, Sir Chris became a Patron of the Association, formalising his position as a powerful advocate for people with MND. The Association’s chief executive, Sally Light, said: “We will remember him for the passion, courage and determination which he showed in so many areas of his life. We would like to offer our condolences to his family, and our gratitude to them for supporting Sir Chris and his interest in our work over the years.”

Susan O’Hara

“My song is a tribute to people living with MND” Talented mum-of-two Susan O’Hara is hoping her voice will help to raise as much money as possible for people with MND. Susan lost her great aunt, auntie and her beloved sister Julie Brown to MND some years ago and has decided to use her talents to write Eyes Wide Open, a song written through the eyes of someone with MND. She said: “A long time ago, my life was all about music. Then I reached a point in my life when I started to go down the wrong path. I felt like I had gone wrong somewhere and I decided I wanted to get back to my music and do a CD. “My father was diagnosed with cancer and my sister had MND simultaneously – both terminal illnesses .

“At that time, people were not aware of MND. My sister was 35 and it took them two years to diagnose her. I decided then that I wanted to raise money for the MND Association.”

Susan, who is also a nurse in Blackburn, Lancashire, started studying for a Post Graduate Diploma in Arts Health and told her lecturer that she wanted to write a song and create a CD as part of her coursework.

She said: “My lecturer, Colin Murrell was really supportive and I gathered some musicians together in a studio.”

The result was Eyes Wide Open, a song which Susan describes as her own tribute to people who are living with MND. The song is available as a download from iTunes, Google Play and Amazon.

news

Understanding the election result

Are you wondering how the result of the General Election will affect people with MND and their carers?

The Association’s policy team has put together this easy-to-read guide to help answer your questions.

May’s General Election saw the Conservatives win a majority of seats in the House of Commons. They will be able to direct changes over the next five years, but their Bills will have to pass through both the House of Commons and the House of Lords before they can become law.

Lots of Conservative plans and policies will affect people living with MND and their carers, although not all have been announced. Here is a brief outline of some of the key issues that we think are the most important, and what we’ll be doing in response.

Health and the NHS Health and social care are devolved issues, so the new Government’s plans only apply in England. Its plans for large spending cuts will however reduce funding available in Wales and Northern Ireland.

In England, we will be working to hold the Government and NHS England to account and to provide services for people with MND. Key focuses for our work will include the provision of communication aids, continuing healthcare and specialised neurology services. We will be meeting NHS England again in July to discuss the latest situation regarding access to communication equipment (see details about our campaign on this issue on page 13). We will also be supporting a range of campaigns with other charities, including wheelchairs and end of life care.

Overall, however, the climate is extremely challenging. Despite some modest protection from cuts, the NHS is facing serious problems with funding.

Social Care The Government is keen to make sure that social care is joined up with health, so that services talk to each other and people have all of their needs met.

The Care Act 2014 set the direction for care at a local level in England before the election. We are yet to see how it will work in practice, but we will be monitoring whether people with MND and their carers are receiving the support they need.

Social care has not yet been promised any extra funding and is instead likely to face further cuts, which will make it difficult

to meet demand. We will be working with the Care and Support Alliance, a national coalition of disability, health and social care charities, to ask the Government to invest properly in social care, so that people with MND and their carers are able to get the support they need.

In Wales, decisions are still being made about how social care will work; we are encouraging the Welsh Assembly to make sure it works as well as possible for people with MND.

Benefits The Queen’s Speech set out some of the Government’s planned welfare reforms.

The benefit cap – the maximum amount of benefits that a person can receive – will be reduced from £26,000 to £23,000 per year, but people will be exempt if they receive some disability benefits. Benefits for those of working age will be frozen for the next two years, but disability benefits will not be included.

The Conservative Party says that it wants to reduce the amount spent on welfare by £12 billion over the next two years. At the time of writing, no announcement had been made as to how it will achieve the majority of these cuts. We will work with the Disability Benefits Consortium, a group of charities working with people with disabilities and health conditions on benefits issues, to campaign against reductions which harm people with MND and their carers.

Working with Parliament The Association provides the secretariat to the All-Party Parliamentary Group (APPG) on MND. The group brings together parliamentarians with an interest in MND and meets regularly in Parliament. Last year the group ran an inquiry into access to communication support for people with MND. We jointly hosted a reception with the APPG to launch its report from the inquiry Condemned to Silence and used the findings in our campaign Don’t Let Me Die Without a Voice. We also work directly with individual MPs and Peers, both on our own and in coalition with other charities.

The Association will continue to work with the Government, partners and networks to make sure that people living with and affected by MND receive the best possible care, support and services.

If you would like more information on our work, or to get involved in campaigning with us, you can email campaigns@mndassociation.org or call the MND Association on 020 7250 8447.

How will these changes affect you? Contact Thumb Print at editor@mndassociation.org

Research and Innovation The Conservative Party manifesto promised to increase the use of cost-effective new medicines and technologies, encourage large-scale trials of innovative technologies and health services, create new research and development hubs and invest £6.9 billion in research infrastructure.

We do not yet know the details behind these proposals, and research funding is not one of the budgets that the Government has said it will protect, so further cuts are possible.

Tougher rules on immigration may make it harder to bring the best MND researchers to this country.

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the mnd charter

33,630 reasons to feel proud Delivering the MND Charter at Number 10 Downing Street

Our dedicated team of campaigners were joined by TV presenter and Association patron Charlotte Hawkins and our Chief Executive Sally Light when they travelled to London to present the MND Charter at 10 Downing Street.

A total of 33,630 individuals and organisations signed the Charter, smashing our original target of 30,000.

The Charter was created to encourage decision-makers to acknowledge their responsibilities in providing access to the right care for people with MND. Sally Light said: “It’s a fantastic figure and thanks to every single person who signed and who then arranged for relations, friends, work colleagues and complete strangers to sign too. I know so many of our supporters took every opportunity to

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promote the Charter wherever they went.”

Liam Dwyer, an MND Association campaigns volunteer from Horley, Surrey was one of three people living with MND chosen to hand in the Charter signatures.

“ The Charter covers basic rights that people living with MND and their carers should have.

Sometimes I feel that the carers get forgotten.”

Liam has been living with MND since 2005 and was the face of the MND Charter when it was launched in 2012.

The former building manager said: “I never thought when we launched the Charter that we would actually end up at Downing Street. An awful lot

has happened since 2012, not least the Ice Bucket Challenge which has helped raise general awareness of MND. But in so many other areas progress is slow, whether linked to diagnosis, care or assessment.

“The Charter covers basic rights that people living with MND and their carers should have. Sometimes I feel that the carers get forgotten. I am still passionate about campaigning on so many levels for improvements, probably more so since I have almost lost my voice.”

Although we are no longer collecting signatures for the MND Charter, it will continue to be used to influence services locally and we will be encouraging local councils to adopt it into their ways of working.

the mnd charter

Record turnout of MPs Following the delivery of the Charter signatures to 10 Downing Street, over 130 Association volunteers, including many people living with MND, travelled to Westminster from across the country, to meet with MPs at a parliamentary reception.

The event was organised to help raise awareness of MND and the Association with new MPs following the general election, and continue to build relationships with re-elected MPs. Our campaign champions for the general election campaign outside Westminster

The road to Downing Street Ahead of the 2015 general election, we called on parliamentary candidates to sign our MND Charter as a signal of their commitment to work with us if they were elected, and to support our work on improving access to communication equipment for people with MND. Around 2,200 supporters contacted their parliamentary candidates urging them to take action. As a result, almost 500 parliamentary candidates signed up to our MND Charter.

Our 12 Campaign Champions helped make our voice loud and strong by meeting with local candidates face to face in their area, organising vigils, taking part in media interviews and attending the launch of the All Party Parliamentary Group (APPG) on MND’s report Condemned to Silence. The launch of the report in January was attended by over 50 MPs and reached nearly two million people thanks to supporters joining our first ever online flash mob via Thunderclap.

Following the launch of the APPG report, Prime Minister David Cameron agreed to read our report and promised a meeting with the Department of Health. However,

the meeting was not forthcoming so, we launched the #SelfieAgainstSilence campaign action on Twitter to put pressure on former Health Minister Norman Lamb MP to meet with us. Within 24 hours, he agreed, and subsequently wrote a letter to NHS England asking for urgent action on this issue.

In April, we met with senior officials at NHS England and urged them to take immediate action to improve communication services. Both of these meetings were significant steps forward for the campaign. NHS England issued both a commitment to redouble its effort and unreserved apologies to people with MND for the problems they have faced.

As Thumbprint when to print, a further meeting was held with NHS England, which we will report on soon. We are also currently gathering evidence on access to communication services for people with MND and will present this to NHS England at the meeting.

With the support of our volunteers, we continue to engage with MPs and key decision makers to ensure they understand the needs of people with MND.

Justin Tomlinson MP

Justin Tomlinson MP with volunteers from North Wiltshire Group

An Association record turnout of 78 MPs met with our amazing volunteers and heard first hand what it is like living with MND or caring for someone with the disease. Sharing personal experiences of MND is a very effective way of influencing politicians and encourages them to champion MND both at a national and local level.

We will be building on the success of the reception and continue to raise awareness of MND amongst parliamentarians so that the vision outlined in the MND Charter can be realised.

Get involved If you are interested in getting involved in campaigning with the MND Association, get in touch with our Campaigns Team www.mndassociation.org/ campaignwithus Email campaigns@mndassociation.org Telephone 020 7250 8447

thumb print Summer 2015 13

your stories how MND has affected your lives

A trip to the races

Association visitor Elizabeth Hill arranges a treat for Richard.

Farmer Richard Lewis has spent his life outside working the farm.

In his 50s, he was diagnosed with MND. Although the disease has progressed slowly, he is now confined to his home which he shares with his daughter, son-inlaw and two young grandchildren.

Even though it is a busy household, Richard is just a spectator and his only journeys out are for respite care.

Like many farming families, horses are an important feature but watching the races on television is the nearest Richard gets to see them.

As the family’s AV, I felt they deserved a treat and the local branch was approached to support an outing to

Cheltenham racecourse.

Daughter Sam soon got busy and booked a box for the last Hunter Chase evening event of the season.

A special taxi was booked, some bubbles appeared and we were off!

Although cloudy and cool the sun shone and the racecourse looked amazing backed by the Cotswold escarpment.

We were near the finish and had a fantastic view. Richard was very astute, and had some small bets with rewarding results. The buffet was plentiful and our host Kelly attentive. As dusk fell, we piled back into our transport and arrived home weary but happy.

Richard and family had thoroughly

Richard Lewis enjoys a day at the races

enjoyed themselves and were very grateful to the Worcester Branch of the Association for the opportunity to take Richard out for a special event. As an AV I don’t recall this being on the job description but hey, you just never know!

So proud of Mum

Fran Tierney was just 43 when she was diagnosed with MND in May 2011. Her diagnosis has had a huge impact on the family not least her son George, who wrote about his mother’s condition for his GCSE in English. These are his words.

It hit me like a freight train but it never hit her. I was scared but it didn’t faze her.

A mother to three, a wife to a husband, a daughter to the deceased, someone who worked for others and, even after the news, continued to give.

She doesn’t allow it to bring us down, we always come first, she doesn’t allow it to hold us back and she doesn’t allow us to think so.

But even though she’s stronger than stone and is the foundation to my family, she still needs us as much as we need her, tasks as simple as eating and drinking, things we take for granted, she needs assistance.

Things like going to bed at night on her own or putting her clothes on, simple everyday tasks she needs help with.

Yes, she puts up a fight and hits her illness head-on, she couldn’t do it alone, without my aunties she’d have no socialisation, without me or my brothers she wouldn’t be able to keep in contact with old friends from work or school and without my father she wouldn’t be able to get out of bed in the morning.

She still has her mind and her thoughts; the illness hasn’t and can’t corrupt her mind but it has corrupted her body. Slowly, day by day, seizing up like a disused car.

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Fran and George Tierney

It’s all well and good having the ability to think for yourself but if you can do nothing else, if you have little to no motor skills, life doesn’t just become difficult it becomes near enough impossible and it’s for this very fact alone that I admire my mother.

It’s like a car with no wheels, it can run but it can’t move. It needs something else to drive it and keep it moving.

Those three words, that three letter abbreviation. They contort my body, they make me feel numb. Just the thought is unexplainable; it’s sickness, anger, hatred, confusion, disbelief and exasperation. It’s just a question of why. She has done no wrong, she has committed no crime and yet she’s punished with this evil.

Stuck in a state that worsens by the day, slowly chipping away at her existence and her strength, her being. One day it

will finish its job and you can throw all the strength, the support, the courage in the world at it but death is an inevitability. One day it will win.

When it does win there will be no ‘mum, sister or wife’. Just a memory. We all know this but we get past this. We hold it down and do what we can but we all understand and know of each other’s fear and distress.

The caution of the topic, the avoidance of the name and the simple looks of concern when something goes wrong.

We all see this in ourselves and others.

Sometimes it’s not the illness itself or what it will eventually do to my mother but instead what it’s doing to people around me. How it affects them. How does it feel to them? What do they do? A string of questions flows through my mind all of the time and it just perplexes me, the oxymoronic and paradoxical idea of knowing but not knowing. The idea that I understand what they’re going through but also not knowing.

MND is now a part of not only my mother’s life but also everyone else’s family lives. This doesn’t mean that we wait on hand-and-knee for her but we all do something for her and her simple ‘Thank-yous,’ and a smile are enough to keep us going.

your stories how MND has affected your lives

“MND could never kill grandma’s spirit”

Deborah Parsons and her family describe how even at the worst of times, MND never stopped their grandma’s zest for life.

A year ago, I had never really given motor unwell, at the most she would say, “I’m not too bad” (which to us means she was neurone disease much thought. I knew having a very bad day). I for one, am not it was a horrible illness, but I never truly sure I could be this strong if faced with knew of its effects. In March last year, my having this cruel illness and why should grandma was diagnosed with MND and it you have to be? I have the utmost respect is more than horrible, it is cruel and it for anyone suffering with MND, because is devastating. very few people know exactly what they It all started in August 2013, when are going through. it was first noticed that my grandma was slurring her words, we didn’t think much of it at the time, but encouraged her to see the doctor. It took six months and a vast amount of tests, until she received the diagnosis that sadly, this symptom wouldn’t be going away, in fact, it would only get worse.

What many people find shocking about MND, is that there is no cure. Once it takes hold of your body, there is nothing to stop its progress and you become, effectively, locked into your own body.

Family and friends have to watch helplessly as someone Deborah Parsons and her grandma they love suffers and there My grandma having MND pushed my is nothing they can do to help them. mum and her siblings to the limit at times, Within a few months of being but we like to think we are pretty positive diagnosed, my grandma lost the ability people in this family (just don’t ask anyone to speak, she found it difficult to swallow, we know to corroborate this story). she choked, fell regularly and lost stones and stones in weight. However, what this “The effects that MND has on disease never managed to do (and it had someone is very difficult to put a bloomin’ good try), was kill her spirit into words, because you have to and crazy good attitude to life. While see it to believe what can happen we are all worrying that she had lost her in such a short space of time.” keys, or wasn’t answering her phone, she So, what do you do when faced with a was down the club, off playing bingo, or member of your family having a terminal doing the chippy run for a friend. We can illness? You bake and stomp across the frankly only conclude that she did not Humber Bridge of course... although not receive the memo that she had a serious at the same time… In September last year terminal illness, because she was not it was the annual event Walk to D’Feet taking it lying down! organised by the Hull and East Yorkshire The effects that MND has on someone Group. This is where, anyone involved with is very difficult to put into words, because the charity, mass walks across the Humber you have to see it to believe what can happen in such a short space of time. What Bridge and raises money for doing so. The day before this event, we put on a tea and my grandma showed to me (and the rest cake afternoon at the accommodation of my family), was she was an incredibly where my grandma lived; this soon brave person. She never moaned or got became referred to as my grandma’s angry, she rarely admitted to feeling

‘party’. So, we all got our bake on (The Great British Bake Off had nothing on us, of course) and produced more chocolate cupcakes than your average bakery.

After an afternoon of slicing, stirring and brewing, we raised over £200, along with over £250 for the walk the following day we were pretty chuffed.

As you may have guessed from reading this, my grandma is sadly no longer with us; eight months after being diagnosed, on 10 December 2014, she sadly passed away. Since her diagnosis, we had all been terrified that when she did die, it would be filled with suffering and pain, but thankfully, this never happened. She passed away so peacefully, at her local hospice, after spending the day with her children laughing and joking (and even managing to fit in an episode of Emmerdale). My grandma was very lucky to have had a wonderful MND nurse, who we all cannot thank enough for everything she did for her in order to make grandmas life what she wanted it to be. Two days before she died, grandma was playing bingo at the sheltered accommodation where she had lived for 21 years and where she always felt safe and happy. Even through the biggest struggle of her life, she kept doing exactly what she loved and what made her so very happy; for this, we were all so thankful.

MND has become a part of all of our lives now and we will all keep on raising money and supporting the work of the MND Association, so that one day, there will be a cure.

By Deborah Parsons on behalf of Kevin, Sharon, Joanne and Jayne and all of Shirley Westerdale’s loving family.

your stories: Please send your stories and photos to

editor@mndassociation.org or Editor, MND Association, PO Box 246, Northampton, NN1 2PR

thumb print Summer 2015 15

your stories how MND has affected your lives

“Every cloud has a silver lining” Charlotte Sabey-Corkindale from Hitchin in Hertfordshire, was just 23 when she was diagnosed with MND three years ago. Despite the obvious challenges, Charlotte is determined to live life to the full and, thanks to her Eyegaze, is now able to enjoy creative writing. In this feature, Charlotte shares her work and talks in her own words about her journey with MND. “In October 2012 I received a diagnosis of MND. I was 23 and had recently moved to Manchester for my first job after graduation. I had been experiencing weakness in my hands and legs, and noticed that something wasn’t right with my speech. I put these down to the pressures of moving away and having a new job.

“Being diagnosed is very tough on the ones you love. I am blessed with an incredibly supportive family, who are focusing on making the most of what we have. Being ill means that I am able to spend time with my family, a luxury that I would not have if I was well. Every cloud, even this particularly dark cloud, has a silver lining. We are enjoying our time together.

Charlotte pictured with her brother Hamish during their trip to America In September 2013, we took a roadtrip across America, driving Brits abroad have also found, that coast to coast along Route 50. Part of this repeating a phrase angrier and louder route, through Nevada and Utah, is called does not mean that I’ll be understood The Loneliest Road in America and you any sooner. can drive for 100 miles without seeing “Being diagnosed is very tough another soul. The landscape is vast and on the ones you love. breathtakingly beautiful. It was the trip of a lifetime.

I am blessed with an incredibly “My friends have also been amazing. supportive family, who are They have been constantly supportive of focusing on making the most of me. They had all heard of MND before I what we have.” became ill, and several have fundraised for the MND Association. They are always “My breathing and swallowing are there if I need to talk about what’s going declining, but are still okay at the on. What’s great is that they treat me no moment. I can’t use my hands at all and differently to when I was well.

I’m wheelchair bound now. I’m a very “My family and friends are very patient bossy patient, issuing a constant list of with my speech now, which is virtually demands, and I would like to take this unintelligable. I’ve discovered, as most opportunity to thank my family and

friends for their care, love, kindness and understanding. I’m very fortunate to have you all in my life.

“My symptoms have also been the source of another silver lining. I had to quit my job because of my illness, and I’m unable to work now. However, with the use of an Eyegaze computer I have discovered a love for creative writing.

One day I just decided to try and write a short story, and became hooked! I had always wanted to write, and now I have time to do so. I’m really enjoying creating characters and coming up with different stories. Although I can’t work in the traditional sense, I can still focus on a project and indulge a new-found passion.

“To anyone who is newlydiagnosed, I would say that it’s worth taking a few days to yourself. I spent several days in bed, alternating between crying and eating pizza. This meant I had time to let the news sink in properly before I tried to plan for the future. Also, although it’s important to be informed about your condition, don’t spend too much time on the internet, as tempting as it is. There is a lot of information out there that won’t apply to you yet. I spent hours reading about equipment that I was nowhere near needing, and all it did was increase my terror tenfold. I have found that dealing with stuff like that is much less overwhelming when it comes up, instead of ages in advance.

“There are going to be some really tough days ahead, but these will be far outnumbered by brighter days.”

Read Charlotte’s story Breakfast by Tiffany online at www.mndassociation.org/life-with-mnd/personal-experiences

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your stories how MND has affected your lives

Never say never Simon Aspray, 60, was diagnosed with the PLS variant of MND in 2005. In this article, he talks about the joy of family life.

“My daughter is emigrating to New Zealand!” And with that thought buzzing around in my mind, we waved goodbye to her and her husband at Heathrow on New Year’s Eve in the last hours of 2009.

It was hard - we are a close family and the sadness was compounded and augmented by the thought that this young couple represented my only chance at seeing grandchildren.

Four years into my PLS diagnosis, I assumed I would get to know them via Skype or similar. Life is tough, I thought, and there’s no way I’m flying out there, not even with that incentive. They were quite literally on the other side of the world.

Things settled down again, time passed.

They’d bought an old van and kitted it out with a rudimentary bed and kitchen.

It sounded idyllic, and the sort of thing I would have loved to have done. These two were made of better stuff, as they kept us

posted frequently, and even included us in minor decisions.

Then, in April, having made every effort to settle down and find steady salaried jobs, they were getting a little discouraged. A few days later, in the course of a regular phone call, we happened to mention an opportunity that had come up in our town which suited them. We had no idea at first of the excitement it engendered, but it did engender it to the point that they applied, got it, and, all in a rush, came back to the UK. To say joy was unbounded is pretty accurate. We offered them our loft conversion. A few weeks later they announced the pregnancy, and unbounded joy became ... um... more unbounded...

It’s now 2015 and the little family in the loft still haven’t found anywhere else.

We’re certainly not rushing them! We

Simon and his grandchildren

are apparently a ‘3G’ household, three generations together, and it works well - so well that we can’t imagine it any other way.

We now wake to the sound of two little girls getting ready for the day’s activities, and their piping tones fill me with more ... um ... unbounded joy. Days are filled with their play, their growing up, their company which fills the house with that extraordinary dimension of life that only children can bring. From the farthest part of the planet they came to live in our house, and I am grateful. Life is good.

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feature

Things to remember…

if you want to come

Every year, hundreds of thousands of UK citizens emigrate in search of a better life or a sunny retirement1.

Inevitably, some of these people will later experience an age-related decline in health or be diagnosed with a life-changing illness like MND. If that happens, they may think about returning to the UK to be with loved ones or to be treated by a familiar healthcare system.

So how easy is it to move back to the UK if you’ve been living abroad and what are the hurdles that someone might face?

Our MND Connect Helpline answers many queries like this each year. Every case is individual and the information given will depend on variables such as which country the person is coming from, their level of independence and how long they have been away.

Here are some of the general issues that an individual may face and some sources of further information.

Getting back by air

Some airlines require medical certificates confirming that a patient is currently

18 thumb print Summer 2015

stable and fit to fly.

The final decision whether or not to carry a passenger is at the discretion of the airline, but the more information that is provided in advance, the more likely it is that a reasonable, evidence-based decision can be made.

You can’t take your own wheelchair into the passenger cabin of a plane - it will be stored in the hold. Speak to your airline to find out what help they’ll provide when boarding.

You will need advance permission from the airline to use electrical equipment and medical devices whilst on the plane.

You must travel with a companion if you’re not self reliant, for example if

you need help with feeding, breathing, medication or using the toilet.

It may be possible to get PEG feed delivered to a pharmacist after airport security, allowing you to take sufficient quantities on to the plane.

Will I be allowed to stay in the UK?

If you’re a British citizen you have an automatic right to reside in the UK, as well as in Ireland, the Isle of Man and the Channel Islands.

However, if you’ve recently returned to the UK after a period living outside of these areas, you may have to show that you satisfy the Habitual Residence Test

feature

home “I felt I was in a dark tunnel with no light at the end” When Henry Campbell wanted to return home to Belfast from Malaga, the MND Association was there to offer a helping hand.

Henry has MND and is paralysed from the neck down. In January, his sister, Margaret White, contacted the Northern Ireland branch of the Association to see how it could help in getting him home. She was put in touch with regional care development adviser, Helen McClean.

Margaret said: “When I was trying to explain the background to Helen, I broke down and was very upset. I felt I was in a dark tunnel and there was no light at the end.

“During my conversation with Helen she explained everything to me in a lovely personal, caring and professional manner, comforted me and assured me she would do everything for Henry that she possibly could.

“I will always remember the telephone call I received from Helen to tell me that she had been successful in organising a bed for Henry in Musgrave Hospital, Neurology Ward. I was so relieved.

“I am so delighted there is an MND Association and I know how important the Northern Ireland branch is to me.”

(HRT) in order to claim certain meanstested benefits or use NHS services.

To satisfy the test you must show: • You have a right to reside in the UK • You intend to settle in the UK, Isle of Man, Channel Islands or Ireland (the common travel area) and make it your home for the time being. This is known as habitual residence.

You should not be subject to the test if you’ve simply been abroad on a long holiday. In these cases you should be treated as a ‘returning resident’. However, if you’ve spent three months or more living or working abroad you could find yourself subject to the test when you return to

the UK, particularly if you no longer have property or close family in the UK.

Will I be eligible to claim benefits on my return?

that you meet the local eligibility criteria, a local authority may conclude it has no duty to provide long-term care for you.

This is likely to be a particular problem if you are in need of residential care.

Using the NHS as a returnee

Given the initial potential uncertainties of establishing your rights to long-term care provision before you establish yourself in the UK, it is necessary to plan ahead.

Benefits eligibity will depend on your particular circumstances and a variety of factors. You should seek specialist advice before returning so that you will know what to expect and budget accordingly.

You can get free NHS hospital treatment if you are lawfully entitled to be in the UK and usually live here. This is called being ordinarily resident.

On your return to the UK, it is important to register with a local GP practice as soon as possible. GPs act as the gateway to community-based NHS services and can, when necessary, refer you to a hospitalbased consultant for further tests and treatment. You must go through your GP to be referred to a hospital-based consultant for NHS tests and treatment.

If you are staying temporarily with family or friends while looking for permanent accommodation, it is possible to register as a temporary patient with a local GP practice. This is appropriate for a stay of more than 24 hours but less than three months.

If you are entitled to free NHS hospital treatment, family members including your spouse, civil partner and dependent children will also be able to get free treatment, but only if they are lawfully allowed to live in the UK.

What if I need to use social care at home, or even need to go into a care home?

Given the initial potential uncertainties of establishing your rights to long-term care provision before you establish yourself in the UK, it is necessary to plan ahead. You might, for example, return to the UK and privately place yourself in care home accommodation temporarily to establish your ordinary residence and then request a needs assessment from the local authority covering that area.

Where ordinary residence has been established the local authority has a duty to carry out an assessment of needs when requested and may, for example, recommend the provision of care home accommodation to meet the identified eligible needs. However, it may not agree with your wishes and its assessment outcome may result in a recommendation for a different type of service, or it may conclude that your needs do not meet their eligibility criteria. In this case it should provide you with support and information to assist you to meet your own needs.

Office for National Statistics: over 327,000 people emigrated from the UK in the year ending September 2014

1

More information on the topics discussed in this article is available from MND Connect on 03457 626262 or the following websites:

To receive social care you must be ‘ordinarily resident’ in a particular area in the UK. If you are returning to the UK in immediate need of care, it is important to understand that a local authority only has a duty to assess you once you are present in person and that they may not have a duty to provide long-term care services following this assessment.

This means that it is often difficult to arrange publicly-funded care before you return because a local authority will usually want to assess you in person. In addition, unless you can demonstrate the required connection to an area and

www.ageuk.org.uk www.mndassociation.org www.citizensadvice.org.uk www.counselandcare.org.uk www.citizensadvice.org.uk www.emigrationexpert.co.uk

thumb print Summer 2015 19

care

More support for care workers As MND progresses, people with the condition can become more dependent on others for their day-to-day needs.

For some, this care will be provided by a partner, family or friends, while others will receive support from a professional carer.

Professional care and support workers

A care worker with MND knowledge can make a huge diffeence to someone with the condition

receive varying levels of training. Unless they have cared for a person with MND before, they may not know much – or anything – about the condition. The symptoms of MND mean that a person with the condition can have very specific care needs and may use a range of different equipment, which may be unfamiliar to a professional carer. A care worker may spend a lot of time attending to someone’s needs and it is vital they have an understanding of MND. Whether a professional carer is looking after a person with MND now or in the future, and whether they work at the person’s home or in residential care, information and education can help

20 thumb print Summer 2015

prepare them for this role.

That’s why we’ve worked with the University of Northampton to create a new, free to access online learning module in MND. This Level 2 module was developed with a team of health and social care professionals, supported by IT specialists. The user-friendly module is broken down into 20-30 minute sections, to allow care workers to fit study into the time available to them. Each section explains a different MND symptom area. It explores the care worker’s role in management and describes ways in which they might support the person living with MND in their care.

To support this module, we’ve also produced a new booklet, Caring for a person with motor neurone disease: a guide for care workers. This evidence-based resource covers the role of the care worker, signs and symptoms of MND, practical tips on caring for someone with the condition and includes information on supporting someone to plan ahead for the future. The information was reviewed by a number of health and social care professionals, including care workers with experience of working with people with MND. Care workers are a vital part of the team of professionals who are caring for a person with MND. If they’re spending a lot of time with the person, they will start to notice changes in their condition or may be able to flag when something isn’t right. This information and education is designed to empower them to have the knowledge and confidence to provide the best possible support.

Find out more about our information for care workers at www.mndassociation. org/careworkers The booklet is available to order by calling MND Connect, or it can be downloaded from our website at www.mndassociation.org/publications

Booklet is endorsed

by RCGP We’ve updated our flagship information resource for professionals, our booklet for GPs and primary care, and once again it has received endorsement from the Royal College of General Practitioners (RCGP).

The booklet was reviewed by a panel of experts, including members of our GP Network, and the content was informed by suggestions from people affected by MND about what they would like GPs to know about the condition. It has also re-launched with a refreshed look and a new title: Motor neurone disease: a guide for GPs and primary care teams.

This publication remains our most popular resource for professionals, with around 60 online versions downloaded from our website and 200 printed copies ordered each month.

It can be downloaded from our website at www.mndassociation.org.uk/ publications or copies can be ordered from MND Connect. Please take along a copy when you next see your GP!

Get ready for winter It may still only be July, but it is not too early to plan ahead for your next flu jab.

Appointments will be available from September.

The Department of Health advises that people with certain conditions, including MND, should have the flu jab each winter. This can help prevent more serious illnesses such as bronchitis and pneumonia. You may also qualify for the flu jab if you are a carer or live with someone with MND, as they may be at risk if you fall ill.

It only takes a minute to get the flu jab, and it will protect you for 12 months. It cannot guarantee you won’t get flu, but if you do, symptoms are usually milder following the jab.

You may be offered the flu jab by your GP, but if not, you can contact the surgery for an appointment. For more details, contact MND Connect: Telephone: 03457 626262 Email: mndconnect@mndassociation.org

care

Disability Living Allowance (DLA) is ending…

If you are living with MND, and need help with extra costs from long-term illness or disability, you may be receiving disability benefit. This is under reform by the government.

Disability benefit used to be called Disability Living Allowance (DLA). You may still be receiving this if you were given a lifetime award before April 2013.

Since then, new claims have to be made for Personal Independence Payment (PIP) instead, which is replacing DLA. If you are of working age and still receive DLA, please be aware your existing award will end or be replaced by PIP, even with a lifetime award. This changeover began in July 2015, which is earlier than expected, and will finish in 2017.

You can find out which areas will change first and other details, on our website at: www.mndassociation.org/pip Ensure you reply to your letter about DLA ending within four weeks if you wish to apply for PIP. Your DLA will then continue until a decision is made about

your claim. If awarded PIP, you should see no gap in payments, but your level of award could change, depending on your circumstances.

If you do not apply for PIP, your DLA will stop.

When claiming for PIP, you need to provide clear details about your needs to receive a suitable award. The following may help: Government information about PIP: Find latest information at: www.gov.uk/pip and www.gov.uk/pip/what-youll-get Our MND Connect helpline: Contact the helpline if you would like to be directed to services or additional information to support your claim: Telephone: 0345 626262 Email: mndconnect@mndassociation.org

Our information: For more about PIP, see Information sheet 10A – Benefits and entitlements at: www.mndassociation.org/publications or contact MND Connect for a printed copy.

Medical evidence from health and social care professionals may be required for your claim.

Professionals can access: Providing medical evidence for benefit applications at: www.mndassociation.org/ forprofessionals Guidance about the claim form: Search for how to claim for PIP at: http://disabilityrightsuk.org While we cannot take responsibility for their information, they provide detailed guidance about the way the claim form is scored, which you may find helpful.

The MND Connect Helpline number has changed –

it is now

The MND Association has utilised a 08457 number for the Helpline for many years. The initial rationale was that when most people were likely to ring from a BT landline, this was a cheaper option for them. However, the technological landscape has now changed and for callers using a mobile phone or a non-BT landline, this can now be an expensive option as other providers may charge premium rates to their users.

Obviously, we want our Helpline to be as accessible as possible so we have made the decision to switch from the 08457 format. Ultimately, we want to change to a freefone helpline, meaning that we, not the caller, picks up the cost of the call and then at a greatly reduced rate. Our

03457 626262

current telecoms supplier is unable to provide us with a freefone number, but as part of a technological overhaul at David Niven House, we are shortly going to be

moving to a supplier who can.

In the meantime, we have made the decision to move to an interim number.

Whilst not a freefone number, it does have the advantage of being much cheaper to call - it’s the same rate as calling an 01 or 02 number.

We will be disseminating this information as widely as possible – but please do help us by letting all your contacts know.

Anyone calling the ‘old’ number will now hear an automated message telling them that they have dialled an 08 number which has now been changed.

They will be asked to redial, using 03 instead and told that they will not be charged for the call.

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fundraising

everyone

Fundraising is for

whatever your age!

Without the incredible support of our amazing fundraisers we wouldn’t be able to continue our vital work in supporting people with MND. Whether you are nine or 90, whether your contribution is big or small, every penny you raise helps to improve the life of a person with this cruel disease. In this feature, we meet some of our youngest fundraisers, Asha, Lewis and Hope as well as one of our oldest, 91-year-old Ted Parr.

For Adie, Kiran and Asha, fundraising is about more than just raising money – it’s a way of fighting back and feeling empowered.

Adie was diagnosed with MND when his young daughter Asha was just three. Since then, the family who live in Lincoln have taken part in a fundraising event every year, raising an incredible £50,000 for the Association in the process.

On May 2, Asha, who is now eight, added to that total by raising £3,800 for the Association by propelling herself in a manual wheelchair for an hour-and-a-half.

Asha’s mum Kiran said: “Fundraising is really important to us all. Asha did her first bit Adie, who is living with MND, his wife Kiran and their daughter, Asha at an MND meeting and raised £1.80 when she was about five – she just got a pot and went round a few people! It Kiran explained: “Asha was three when is vital to raise funds for research to try and Adie was diagnosed so we didn’t tell her find something to stop this cruel disease.” that Adie had MND. “We introduced her to people with “Fundraising is really important MND who were at different stages and to us all. Asha did her first bit encouraged her to ask questions.

“Asha has attended MND meetings with at an MND meeting and raised us and has got to know more about the £1.80 when she was about five.” condition over the years. We let the natural MND process take place and explained Among the biggest challenges the everything as things were happening. family has faced has been explaining When Adie went onto crutches she had a Adie’s condition to Asha.

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go. She also drove his scooter with him. When friends with MND died she began to understand that this disease kills people so she understood what a devastating disease it is without having to tell her directly.

“The underlying principal is to be honest and explain things that their age will allow them to understand. As she is older now, we talk about how Adie is getting weaker and is struggling with daily life and she knows that he will die, just not when.”

Jolene Sandwith is another very proud mum.

In May, her children, nine-yearold Lewis and seven-year-old Hope, raised over £900 for the Association by taking part in Run or Dye – an event which saw them take part in a 5km run while having coloured dye thrown at them.

They were inspired to support the Association to help Angela, a close friend who Jolene got to know through her work as a cleaner. Jolene, who lives with her family near Swindon, said: “About two years ago, Angela asked me if I would clean her house.

“At the time, she was going to hospital for tests and eventually she found out that she had MND. I started going to her house every day to see her and her husband and

fundraising sometimes the children came with me.

They fell in love with her.

“They were asked if they wanted to take part in Run or Dye and they said they wanted to do it for Angela.”

“ The sense of support from the kids helps to keep me smiling, just knowing someone cares means so much.”

They decided they would like to make a short video with Angela to promote awareness of MND which caused great amusement and also gave everyone a lasting memory.

Angela said: “The sense of support from the kids helps to keep me smiling, just knowing someone cares means so much.”

Jolene said the pair was thrilled with what they had managed to achieve at such a young age.

Lewis said: “I am glad that we did the race, it was good fun and we are so happy we raised lots of money.”

His sister Hope said: “I found it a little bit hard but kept going to the end and loved being covered in paint.”

Lewis and Hope Sandwith, taking part in Run or Dye

The Association has recently invested in a Children’s & Young Persons’ Service Development Manager to further develop support services this year for young people affected by MND. If you are interested in getting involved please contact James Kitchener james.kitchener@mndassociation.org

Daredevil Ted gets ready for 105mph zipwire challenge At the age of 91, you could be forgiven for wanting to spend some time with your feet up while enjoying a nice cup of tea.

But the quiet life is not for Ted Parr who, later this month, will whizz down the Penrhyn Quarry Zipwire in Wales to raise money for the MND Association.

Not only is the zipwire the longest and highest in Europe – measuring one mile long and 500ft high – Ted can also expect to reach speeds of around 100mph as he makes his nail-biting descent.

But Ted, who served in the Royal Air Force during the Second World War, is only motivated by one thing – trying to raise as much money as possible for the Association in memory of his beloved wife Mary, who sadly died from MND in 2001.

He said: “I nursed Mary on my own for two-and-a-half years after she was diagnosed in 1999.

“Our doctor trusted me to ensure she had her medication and knew that I would look after her.

“We had never heard of this disease, but we were very soon to learn of its dreadful consequences.”

After Mary died, Ted decided that he wanted to do more to help those with MND and decided to attend a meeting of the Gwynedd and Ynys Mon branch.

He said: “I wanted to thank them for helping us and I remember noticing that it was a very cosy outfit. I started off by doing some collections on their behalf.”

Over the years, Ted has held a number of roles within the branch including assistant secretary, fundraiser and newsletter editor, some of which he continues to do. But it was his time as an Association Visitor which he enjoyed the most.

He explained: “Coming face-to-face with those who needed my help was quite the most rewarding and satisfying of my whole life. My experience as a carer was of enormous value.”

The idea for the zipwire challenge, which is due to take place on July 26, came while he was chatting to a nurse at his local hospital.

He said: “I have to have kidney dialysis

Ted Parr, who is preparing to take on a zipwire challenge to raise money for the Association

treatment three times a week and, during one of my visits, I was chatting to one of the nurses who was about to turn 50. She said that she had been set some adventurous challenges including walking along Hadrian’s Wall and rock climbing. The idea came from there and I am hopeful that the nurses will come along to support me.

“Coming face-to-face with those who needed my help was quite the most rewarding and satisfying of my whole life.

“My wife had a very expressive face and the most expressive eyebrow I ever saw! “ My daughter, Anne, has obviously inherited her genes, because when I told her what I was going to do I saw that eyebrow again. She smiled and said, “When are you going to grow up!”

If you would like to support Ted, you can make a donation by visiting his Just Giving page at www.justgiving.com/TedParr Are you taking part in an unusual fundraising event that you would like to tell Thumb Print about? Email us now at editor@mndassociation.org

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fundraising

Karen lives on through her art

Artist Karen Roskell

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fundraising Art was Karen Roskell’s first love. When she died from MND last year, her husband Jack decided to continue selling her work to raise money for the Association through a tribute fund – set up in her memory.

Karen Roskell was an artist who surrounded herself with beautiful things.

Her first love was painting, but she also had a talent for making jewellery and ceramics and often sold her work at craft fairs.

When she was diagnosed with MND in 2012, her husband Jack and her sons, Matt and Sam, did everything they could to ensure that she could continue to paint for as along as possible.

Sadly, Karen died from MND in October last year, but the art she created with so much love and care continues to do wonderful things by raising money for the MND Association through a tribute fund set-up in her memory.

Jack explained: “Karen was interested in art from an early age and excelled in nearly all forms of arts and crafts.

“In the early years of our marriage, she would make jewellery, do china painting, make pots and paint. She would sell her work at craft fairs.

Karen Roskell, her husband Jack and sons Sam and Matt in 2002

“Once our second son had started school, she set-up a small business called Clay Thyme Ceramics. “The business involved teaching clay work at local schools and this resulted in her becoming

a lecturer in ceramics at Furness College.

In 2013, Karen decided that she would “In 2001, Karen left work at the college raise money for the MND Association and to produce her own work in ceramics. She had some cards of her paintings printed sold her work at exhibitions, in galleries to sell. They were sold by her hairdresser, and through commissions.” friends and family and in the local pub, Karen continued until her mother was The Crown, raising more than £600. In diagnosed with dementia. Following her 2014, when she could no longer paint, mother’s death, some canvas prints Karen returned were made of her to her first love – original paintings painting. and these were Jack said: “Her also sold. many artistic Jack said: “Karen talents meant died at home, that she found it peacefully in bed difficult to focus on 11 October on one medium or 2014 with me style. In 2008, she beside her. After finally found a style Karen died, there that really struck a was still a lot of chord with her. It interest in her was influenced by prints, which were the Ruralists, but selling for £80 each rapidly developed and so I decided to into her own style carry on the work which she called she had started One of Karen’s paintings ‘Have you seen Alice?’ rural surrealism.” and sell images of Karen found her inspiration in local her work to raise money.” buildings and scenes, but Jack explained Jack made contact with the MND that she would enhance the scene with Association, who suggested the hills, fields and topiary. possibility of setting up a tribute fund in In late 2009, Karen first noticed the early Karen’s memory. signs of MND. “My intention is to continue Jack said: “In the early days the to sell images of Karen’s symptoms were not very pronounced artwork and donate the funds and largely confined to her left leg. She first consulted her GP in Spring 2010 and through the tribute fund to the was eventually referred to an orthopaedic Association.” consultant. After undergoing numerous scans, it was eventually decided that it Jack said: “I decided that this would be was not an orthopaedic problem and she a wonderful way to continue to celebrate was referred to a neurologist.”

Karen’s life and for her artwork to live Karen was eventually diagnosed with on. My intention is to continue to sell MND in February 2012. images of Karen’s artwork and donate Jack said: “After a little weep together, the funds through the tribute fund to we set about deciding what to do. Karen’s the Association. In this way, Karen can main wishes were to continue to paint continue to contribute to the MND for as long as she could and to be cared Association and assist in the search for for at home. The painting gave Karen a a cure. It is very simple and there is no focus and we were fortunate that she pressure to raise funds. The amount of continued to be able to use her hands for fundraising you do is entirely up to you. a long time. She was still producing and In my view, it is an excellent memorial of selling work until late 2013, even though a loved one.” by this time she needed breathing More information support and could not walk, talk or eat To find out more about tribute funds visit: and could no longer support her neck.

I managed to set her up on a reclining www.mndassociation.org/tributefunds chair with a desk easel and she continued Telephone 01604 611864 to paint.”

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fundraising A huge thank you to our members A huge thank you to all our members who raised more than £100,000 to help fund the biggest MND gene hunt of all-time – Project MinE. In our March appeal we asked our members to help fund Project MinE which will see researchers in 14 countries combing through the genetic code of thousands of DNA samples, in search of the specific genetic mutations that cause MND. The more genetic causes and risk factors which are found, the more we can learn about treating MND and ultimately help find a cure.

Thanks to the money you have raised, Project MinE has now begun with 767

samples from our DNA bank being sent off for sequencing.

The MND Association’s Dr Lucy Smith, who is the administrator of the DNA Bank said: “This is the first step in this exciting project, and once we’ve confirmed that the process works and the data is good for this batch, the plan is to sequence the rest.

In total, we aim to sequence about 1,700 samples from our UK DNA Bank.”

Project MinE could lead to HUGE advances in understanding MND and ultimately finding a cure.

There’s still time to donate, simply call 0345 3751850 quoting 15FB or visit www.mndassociation.org/BIG

Look out for Alvin Shoppers in the town of Cranleigh couldn’t miss Alvin Hale as he took to the streets to promote his branch’s flea market.

Alvin, who is treasurer of the West Surrey branch of the Association, donned a colourful wig and created his own sandwich boards to encourage shoppers to visit the branch’s flea market which was held in April.

It has been a busy time for the branch which also hosted a three-day annual sale of paintings by local artist Mary Hainline.

The event raised over £1,500.

Cafe serves up a fundraising treat

Volunteers man Swinford Toll Bridge near Eynsham

Bridging the fundraising gap Crossing a bridge became a major fundraising event for the Oxfordshire Branch of the Association in May. Pedestrians and cyclists were among those who were invited to donate money to the Association as they crossed the Swinford Toll Bridge near Eynsham on Easter Monday, 6 April.

Each year, the owner of the bridge invites charities to use the bridge for fundraising on Bank Holidays and this year, thanks to the efforts of Branch supporter Jane

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Houchin, the MND Association was chosen.

Jane was supported by 24 volunteers who took turns to man the bridge during the 14-hour event, which ran from 7am-9pm.

The volunteers included people living with MND, staff from the John Radcliffe Hospital in Oxford, members of the Radcliffe Orchestra and members of Oxford Sailability, together families and friends.

More than £2,000 was raised thanks to the generosity of those who stopped.

A day of fundraising and fun was well and truly on the menu at this restaurant.

Peter and Freda Erotokritos, the owners of Le Brunch 3, in East Grinstead, together with their assistant Maxine Meedy, hosted a fundraising and awareness day on behalf of the MND Association in April.

Customers were able to relax in the knowledge that as they were tucking into a delicious treat from the cafe, they would also be helping those living with MND. The event raised £105.

Stephanie Barfield, an Association Visitor for the West Sussex (North) Branch, said: “All of the money collected locally by the Branch is used to help local people who have MND – for example we could fund the purchase of an iPad with a speech app, help with the conversion of a bathroom into a wet room or the installation of a hoist into a car.

“Our thanks go to Peter, Freda and Maxine, and to the people who came along, for donating to a very worthwhile cause.”

volunteering Joan’s pledge to support others with MND When her beloved husband Bill was diagnosed with MND in 1985, Joan Parkinson felt as though they had nowhere to turn.

With little known about MND and no support or advice available, the couple felt isolated and unsure of the future. Just six short months later, Bill sadly died.

Joan explained: “Looking back, I believe Bill had symptoms of MND long before he was diagnosed.

“He had been an engineer, but he got to the point where he couldn’t put a key inside a lock.

“When Bill died, I placed an obituary in the local paper and it was seen by another lady, Olga Camm, whose husband had also died from MND. “She contacted me and asked me if I was interested in setting-up a branch of the MND Association.

“Nobody knew anything about MND – there was just no information at all.”

Together with Olga, Joan formed

That was a big help.” a support group Today, the branch, alongside Barbara which is now Bamsi, Mary Bright known as the Blackpool, and Win Hadwin. The Wyre and Fylde branch first meeting of the has four Association group was held on 21 visitors, holds monthly November, 1985 and open meetings and a was attended by monthly newsletter.

11 people. The guest At the branch’s speaker was the then annual meeting, Joan chief executive of the was presented with a Association, Roy Price.

30 year service award Joan said: “To start by the Association’s with, we would just Director of Research, Dr meet in each others’ Brian Dickie. homes and it grew Joan said: “When I from there. look back, I am just “One of our greatest really grateful that achievements was to Joan Parkinson is presented with her award for 30 year’s service from the Association’s Director of there is now so much help people with aids.

Research, Dr Brian Dickie. support available for My brother-in-law and people with MND and their families. All of sister-in-law worked at British Nuclear the awareness that is being raised at the Fuel in Preston and they agreed to pay for moment is great.” equipment as and when it was needed.

Cliff’s bird houses and flowers have raised thousands

“We love working together to help people with MND”

Building bird houses and selling flowers are ways in which 84-yearold Cliff Davies has raised money for the MND Association over the past 30 years.

His hard work for the Association’s Blackpool Cliff Davies Wyre and Fylde Branch, which has also seen him work as an Association visitor, was recognised at the annual meeting where he received a long-service award.

He said: “I first heard about MND 32 years ago when my sister-in-law Winifred was diagnosed with it. Nobody knew anything about it. She had MND for two years – she went into a residential home and died when she was 71.

“I started fundraising for the Association and once bought some flowers for cost price and sold them. I managed to raise £350 in one day. I then started making bird houses and over the years raised £4,000.

“It was very good to receive the award.”

Husband and wife team, Luke and Pat Rutter have been recognised for their devoted service in supporting people with MND and their families.

Former Middlesbrough Mayor, Ray Mallon, presented Luke, 76, with a Mayor’s Award in recognition of his tireless service to the Cleveland Branch of the Association, which he founded with his wife, Pat in 1987. The couple decided to set-up the branch after seeing the affects of MND at close hand.

Luke, who served as a police officer until his retirement in 1987 said: “In 1985-86 my colleague’s wife, Pat, was diagnosed with MND and there was no branch on Teesside. There was some difficulty as to where people with MND could go, so my wife, who is also called Pat, and I decided to set up a branch here. The first meeting was held on 11 August, 1987.

“My colleague’s wife died about a year later, but we decided to keep going because of her experience.”

Since then, the branch has continued to thrive, with around 20 people with MND, carers and even former carers attending meetings. Pat, who is also 76 and chair of the branch, said: “We have nine

Association Visitors who are really good and we have regular meetings at our local garden centre.

Former Mayor of Middlesbrough Ray Mallon is pictured presenting the Mayor’s Award to Luke and Pat Rutter.

“We also have sessions at The Butterwick Hospice in Stockton-on-Tees, where we offer relaxation sessions and alternative therapy to people with MND. ”Luke, who is the branch’s treasurer, said he thoroughly enjoyed working alongside his wife.

He said: “We are great friends as well, so we love working together and I believe it all helps to keep us young!”

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volunteering

Switching on Spreading the word about the work of the MND Association is now even easier thanks to social media and the internet. Thumb Print meets two volunteers who are using their digital skills to provide greater support for people with MND and their families.

Debbi Francis

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volunteering

to volunteering Having worked in digital marketing for more than ten years, Debbi, who had wanted to become a volunteer for some time, decided to join the MND Association.

She said: “When I saw the opportunity with the Association I was very keen.

“My mother, a retired nurse, had cared for people affected by MND during her career and had often spoken about her experiences, which made me even more interested in helping to support such a worthwhile charity.”

Debbi became a web support co-ordinator for the Association and has been instrumental in setting up a Service Directory, which has been launched in the East of England as part of the Volunteer Fund Project.

and group open meetings where I’ve had the chance to speak directly to people affected by MND, which has given me some powerful insights.

“Everyone I met was so interesting and friendly. All in all I’ve had a really fantastic experience.”

And she had this message for anyone thinking about volunteering for the Association: “Do it now. You won’t regret it. Just get involved. The Association is a wonderful organisation, doing great work and it’s an absolute privilege to be a volunteer for them.”

“Everyone I met was so interesting and friendly. All in all I’ve had a really fantastic experience.”

Debbi said: “The site was set up with the aim of using technology more effectively to create new ways of providing accessible information to people affected by MND. “Before the website was launched, my role involved testing it, to make sure it was working as it ought to and giving feedback to the team at the Association.

“Now, I’m mostly researching details of new services to be added to the site, thereby helping to make it a richer and more worthwhile resource.”

Debbi described her work as a volunteer for the Association as ‘really rewarding.’

She said: “I’ve learned a huge amount about MND, which I might not have known about otherwise.

“Although I am mostly working on my own at home, I have had the opportunity to meet other volunteers, including web support co-ordinators like myself, and a couple of care service navigators.

I have visited David Niven House and discovered more about the work of the Association. I have also attended local

social media within his local support group which covers Bristol and Bath.

He said: “Even though my Dad died 14 years ago, I was unaware that there was a support group in the area. I would have helped out earlier if I had known.

“I’ve produced a website for the group, we’re also on Facebook and Twitter.

They are important platforms to spread awareness, encourage volunteers and communicate with others nearby or across the other side of the globe. It’s the same message everywhere – a world free from MND!” Gareth still works as a digital designer and uses his experience to spread awareness.

He said: “I promote our future events and thank our supporters for their help.

Hopefully through the web, and with help from others, I can give our group and its members the presence and voice in the community it deserves. Seeing the group become more established on the internet is pleasing to see, but also vitally important today and it will continue to be in the future.

“Even though my Dad died 14 years ago, I was unaware that there was a support group in the area. I would have helped out earlier if I had known.”

Gareth Weaver

Gareth Weaver has a very personal reason for wanting to support the Association.

Sadly, his father died from MND 14 years ago and, since then, he has offered his support by taking part in a number of sponsored running events.

In September 2012, he decided to take his involvement with the Association one step further, by becoming a volunteer.

He became a digital media officer and now encourages the use of websites and

“I feel that I’m helping people like my Dad and that helps me. You meet some great people. They are absolute characters, some who are in difficult circumstances and their attitude always make me smile. It’s something I like to do – it’s my helpful hobby.”

For more information about becoming a volunteer for the MND Association, please contact our volunteering team on 0345 604 4150 or email volunteering@ mndassociation.org If you are already a volunteer and would like to share your story, contact Thumb Print at editor@mndassociation.org

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support

Famous faces who

The Association’s VIP Manager Richard White

For the Association’s VIP Manager Richard White, liasing with our Royal Patron and a host of celebrities is all in a day’s work. His work is vital for the Association, which relies on the profile of our famous supporters to help spread awareness of MND as well as generating income. Here, Richard explains what goes on behind the scenes.

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Our Royal Patron joking with our President Prof Sir Colin Blakemore... with VIP Manager Richard White loitering behind!

There have been more famous faces appearing in recent editions of Thumb Print, from actor Benedict Cumberbatch and Good Morning Britain presenter Charlotte Hawkins talking about Ice Bucket Challenge in the Autumn 2014 issue, to comedian Greg Davies and journalist Piers Morgan signing the MND Charter in the last edition.

It has been a busy time for the Association’s VIP Manager, Richard White, who encourages famous people to

support the Association’s work.

The Association is fortunate to have a number of celebrity supporters, including Patrons and Ambassadors, and they help in a variety of different ways; donating auction items, attending events, giving money, fronting radio appeals, taking part in fundraising events and posting on social media channels.

While some branches and groups invite celebrities they know locally to their own events, Richard focuses on projects

support

lend their support which benefit the Association, or raise awareness of MND on a larger scale.

Richard explains: “A big project I worked on was The Theory of Everything.

We had been liasing with the stars of the film (Eddie Redmayne and Felicity Jones), as well as the Hawking family to be named as the benefitting charity for the UK premiere of the film, which took place at the Odeon Leicester Square in December. It was a really exciting event to work on as we invited some people living with MND, as well as supporters who had helped Eddie and Felicity research their roles. Every guest at the premiere saw our awareness film fronted

by Nick Knowles and Eric Rivers, and also received a leaflet about the work of the Association.

Lots of our branch and volunteer supporters bought tickets to the premiere and it was brilliant to see everyone get together for photos on the red carpet (which was actually blue to match the logo of the cinema!)

Benedict Cumberbatch CBE, Victoria Wood CBE and Michael Ball OBE at the Association’s VIP Dinner

raised, plus a huge amount of awareness at both a local and national level”.

Richard also supports the Association’s Chair of the Trustees and Chief Executive, in making sure we maintain an excellent relationship with our Royal Patron, HRH The Princess Royal. This involves a lot of logistical planning, thinking about everything to where a helicopter might land to attempt to hang curtains for a plaque unveiling!

Famous faces who were new to the Association, such as former cricketer David Gower, comedian Victoria Wood and TV presenter Susannah Reid, joined some of our highest profile supporters, including Stephen Hawking and Benedict Cumberbatch. Almost every celebrity invited had a personal connection to MND and we look forward to working with them in the future.

“Every guest at the premiere saw our awareness film fronted

by Nick Knowles and Eric Rivers, and received a leaflet about the work of the Association.”

Patron Prof Stephen Hawking and volunteer fundraiser Mark Bowers in Cambridge

“Later in December, I worked with the Association’s Volunteering Team. We supported 75 different branch and group volunteers who held bucket collections on the opening night of the film. They were incredibly dedicated throughout the Christmas and New Year holidays, getting ready for when the film was released in cinemas on 2 January. Around £30,000 was

In the 2014/2015 financial year alone, Her Royal Highness attended four events, opening our third wheelchair centre, thanking our Association visitors for their tireless work and congratulating those who had helped make the Ice Bucket Challenge so successful.

The fourth event, a black-tie dinner in the State Dining Room at Buckingham Palace, not only gave The Princess a chance to thank key celebrity supporters for their work, but also encouraged them to do more.

‘Good Morning Britain’ presenters Ben Shepherd and Susanna Reid at Buckingham Palace

To find out more about our VIP supporters keep reading Thumb Print or follow @mndVIPteam on Twitter for the latest updates.

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research

Developing the future of

MND research

Behind every great MND research idea, you need an even greater MND researcher; the person underneath the lab coat, the face behind the safety glasses...

The Association is committed to developing our research workforce, as we believe that behind great science you need great people. During our October research grants round, we received a record-breaking number of applications that enabled us to commit funding to 11 high quality research ideas that aim to further our understanding of MND. As well as applications from established scientists, we also saw some new names appear from up-and-coming young researchers.

Using stem cells to understand MND Dr Ruxandra Mutihac, University of Oxford, was recently funded by the Association, which allowed her to gain her PhD in 2014. Following on from her success at Oxford she has continued to grow in the field of MND research, even presenting her research on the podium during last year’s 25th International Symposium on ALS/MND. In partnership with Professor Kevin Talbot, we have awarded Ruxandra her first research grant, allowing her to continue to pursue her research and take the next step in becoming an independent researcher.

Commenting on her new project with us, Ruxandra said: “I was delighted to find out that I was awarded a biomedical project grant from the MND Association as a co-grantee with Prof Kevin Talbot to continue my research for another three years. It is a major accomplishment for me and it gives me the opportunity to focus on the research that I enjoy doing.

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Dr Ruxandra Mutihac

I greatly appreciate the support that I received previously from the Association throughout my early career by offering me a PhD Studentship followed by this grant that allows me to continue my research at Oxford University.”

“My current project is focused on understanding the cellular mechanisms involved in motor neuron degeneration in MND.” By reprogramming skin cells, Ruxandra can create living human motor neurones in the lab to study MND in detail, allowing her to identify potential disease pathways that could be the target of future drugs.

This relatively new technology of creating human motor neurones is the focus of her research and is called induced pluripotent stem cell (iPSC) technology.

Ruxandra said: “My current project is focused on understanding the cellular mechanisms involved in motor neuron degeneration in MND. This is achieved by

using skin cells from people living with MND, and then using iPSC technology to reprogram these cells into human motor neurones.

“I am specifically looking at the interplay between C9orf72, the most common genetic mutation in the rare inherited form of MND (5-10% of total MND cases), and TDP-43, the pathological signature protein found in almost all cases of MND. “In this new research project I aim to identify common disease pathways that could become targets for future therapies.

I am also exploring the differences between cortical neurones (the main celltype affected in frontotemporal dementia) and motor neurones from people carrying the C9orf72 mutation to establish what renders each cell type vulnerable to disease in MND and frontotemporal dementia (FTD).

“As an MND researcher, I am hoping to make a significant contribution to the development of effective treatments for this devastating disease.”

research Understanding structure Dr Gareth Wright has also been awarded his first Association-funded research grant as a co-grantee, in partnership with Prof Samar Hasnain at the University of Liverpool. Gareth’s research involves studying protein structures in exquisite detail to better understand what goes wrong in these proteins when they become damaged in MND. Explaining his research further, Gareth said: “In the past we’ve used structural studies on proteins in isolation to provide an explanation as to why they cause MND. That made a significant contribution to Dr Gareth Wright our understanding of the disease but, like us, proteins don’t exist in isolation, they move around and interact with their surroundings.

“Our new project looks to understand why the interactions between some of these proteins are faulty. With MND Association support over the last six years I’ve developed the skills and tools I need to address this challenging task. Sustained support helped us put together a really interesting proposal and it’s a great fillip to be a co-grantee for the first time. I’m looking forward to getting

stuck into some exciting new science that gives us clues about the molecular causes of MND. Turning that understanding into cures is my goal as an MND researcher.”

drugs that can prevent the TDP-43 protein from causing damage in MND.

Developing a drug screen

Ruxandra, Gareth and David are great examples of how the Association is developing the research workforce. Today, the Association is doing even more in order to attract and retain the brightest young MND research minds of the future.

Director of Research Development at the MND Association, Dr Brian Dickie said: “We recently launched a new non-clinical fellowship scheme, aimed at retaining and investing in the most promising early and mid-career MND researchers in the UK. This scheme will develop these researchers further and give them a helping hand up the research career ladder, on their way to becoming the established MND research leaders of tomorrow.”

Dr David Gordon, like Ruxandra, has also been awarded his first research project with us in partnership with Prof Talbot. Also based at the University of Oxford, David said: “I’m Dr David Gordon extremely excited and proud to be awarded my first grant from the Association. As a researcher, the Association provides not only the funds for my research, but the annual International Symposium on ALS/ MND provides me with one of the best opportunities to share my research with the wider community, both clinical and research colleagues as well as patients and their families.”

In a previous project funded by the Association, the University of Oxford created a new mouse model of the disease containing the TDP-43 protein. David’s newly awarded research will involve him studying the neurones from these mice and using them to screen and identify new

Investing in the future

Find out more: You can read about all the research projects funded by the Association in our Research Information Sheet E: Research we fund.

To request a copy contact: MND Connect 03457 626262 or visit: www.mndassociation.org/ researchwefund

New MND clinical trial announced We are proud to announce our involvement in a new clinical trial in MND, known as MIROCALS, which will aim to start recruiting 216 people living with MND in the UK and France in Autumn 2016.

This will be a joint clinical trial between France and the UK, which consists of €1.5million funding from the French government, €6million in EU funding and €0.5million currently under consideration from the MND Association.

“Because interleukin-2 is well studied, we can monitor the effect of the drug on the immune system using already identified biomarkers.”

The Modifying Immune Response and Outcomes in Amyotrophic Lateral Sclerosis (MIROCALS) study will aim to

investigate interleukin-2 as a potential treatment for MND. Interleukin-2 has been used for many years to treat cancer, however, at low doses it is much safer but still effective against a number of immunological diseases. Because the immune system is involved in causing damage in MND, the researchers believe it may be beneficial in MND too.

The two leaders behind this project are renowned MND researchers Prof Nigel Leigh (Brighton and Sussex Medical School) and Dr Gilbert Bensimon (Hôpital Pitié-Salpétrère, Paris).

Director of Research Development at the MND Association, Dr Brian Dickie, said the Association was very proud to be involved in the trial. He said: “Because interleukin-2 is already well studied, we can monitor the effect of the drug on the immune system using well-defined biomarkers that

Prof Nigel Leigh

will allow us to ‘individualise’ responses to treatment. This work will be done by leading MND biomarker researchers in the UK, Italy and Sweden.”

Prof Leigh and Dr Bensimon will need to put the essential groundwork in place from September 2015 (applying for ethical and regulatory approval) before the trial can then begin recruiting participants in Autumn 2016.

thumb print Summer 2015 33

fundraising

We are so grateful to everyone for taking part in running events and marathons, raising awareness and thousands of pounds along the way.

Thumb Print takes a look back at some of the events and stories which inspired our runners to take part.

A record 155 runners took part in the 35th London Marathon on behalf of the MND Association this year, raising over £265,000 and plenty of awareness along the way.

Our amazing runners proudly wore their distinctive MND branded running vests alongside some fancy dress runners, who dressed up as everything from a tiger to Wonder Woman.

Celebrity chef Marcus Bean also ran on our behalf along with former footballer Chris Perry and actress Kirsty J Curtis.

More than 60 volunteers encouraged our runners, cheering and waving along the route and warmly welcoming over 350 people to our post-race reception with congratulatory hugs, rapturous applause and some well deserved refreshments,

The MND Association events crew

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Going the

Elena Barrett, Euan and Isla Thomas taking part in the London Marathon

“It was wonderful to meet and thank so many of our runners and to congratulate them on their epic achievement”.

together with as many massages as possible for our runners.

Volunteers from the Association’s South London Branch also created a morale-boosting party atmosphere at The Railway Tavern, our official cheering point, at mile 21.

The Association’s Trudi Sadler said: “What an incredible day it was with our dedicated events crew, who ensured our fantastic runners felt valued and appreciated for all their hard work. The energy shown by those who ran and volunteered was truly inspiring.

“It was wonderful to meet and thank so many of our runners and to congratulate them on their epic achievement. I’m so proud of them! It was a privilege to share their running journey with them. Here’s to next year’s event!”

fundraising

extra mile “Jody was a fighter and a fantastic friend” Alex Mabb, who is known as Alfie, ran his first London Marathon this year in memory of his friend Jody Duff, who sadly died of motor neurone disease last year.

Jody was born with spina bifida but he went on to walk, drive and work before being diagnosed with MND in 2010.

As Jody fought the disease, he dedicated his time, together with family and friends, to raising awareness and funds for the MND Association.

When he met his musical heroes Coldplay at the Royal Albert Hall in July last year he inspired them to donate £10,000, also gaining national media coverage.

Alfie, who is 28, said he had applied to

take part in the London Marathon for the last three years but this year was the first time he had been successful.

“I didn’t think I could carry on but I took some painkillers and managed to get through it!”

He said: “I received my letter saying I was accepted to run on October 1 and was really excited to tell Jody. Sadly Jody passed away just two days later.

“He was an inspiration to myself and countless others. He was a fighter; a fantastic friend who lived life to the full and never let an opportunity pass him by.”

Alfie completed the marathon in four

hours and 40 minutes and said he was over the moon with his time.

He said: “I’m so Alex Mabb happy I have done it. I felt really good until mile 15 and my bad ankle really started hurting and the pain I was in was unreal. I knew my family were coming up in the next mile or so and when I found them I just broke down.”

“I didn’t think I could carry on but I took some painkillers and managed to get through it!”

Donate to Alfie at www.justgiving.com/

alfie-mabb

“My Dad was my world” For Karen Murray, taking part in the Manchester Marathon changed her life in ways she could never have imagined.

Tragically, just moments after crossing the finish line at the event on 19 April, Karen received a telephone call from her brother to say that their beloved father, Colin had lost his battle with MND. Understandably devastated by the news, Karen now says she wants to do even more improve the lives of those affected by this cruel disease.

She explained that her father had been diagnosed with MND in 2013 at the age of 62.

She said: “It was a difficult and frustrating period, as my Dad knew something wasn’t right but nobody could tell him what was wrong. He first had a concern when he couldn’t push his golf tee in the ground.

“After 12 months of frequent trips to the doctors and specialists for tests, he was diagnosed in December 2013.”

Karen explained that it wasn’t long before he stopped doing everything he loved.

She said: “I count myself as lucky now, as I was able to give up work completely.

I wanted to spend precious time with my Dad and support my Mum, who did a fantastic job looking after him along with my sister Lisa and brother, Andrew.

“Witnessing what it was doing to Dad,

who never complained and always smiled, broke my heart.

“My way of dealing with this was to give something back, and raise vital funds and awareness for MND. I knew there wouldn’t be a cure in my Dad’s life time, but I hope there will be for others.

Having not run for 18 years since high school, Karen joined a nearby running club, met some great people and found a love for running.

“Feeling hugely inspired by my Dad’s courage and bravery, I then entered three further half marathons and the ultimate big one – the Manchester Marathon.”

Before she knew it, she had signed up to the Great North Run Half Marathon in Newcastle along with her husband, brother and close friend. She raised an incredible £5,438.78.

She said: “My efforts didn’t stop there.

Feeling hugely inspired by my Dad’s courage and bravery, I then entered three further half marathons and the ultimate big one – the Manchester Marathon, all to be completed within my first year of running. I was so excited about running the marathon. “Other than having my children, it would be my biggest triumph to date.

“For four hours 30 minutes I battled all

Karen Murray and her father, Colin

sorts of emotions and then, upon entering the final 100 metres, it was there - the finish line. A smile spread across my face, I had done it. “My Dad will be so proud of me,” was my very first thought and I couldn’t wait to get over that line and home to show him my medal and to give him a huge hug.”

But moments later, Karen found out that her father had sadly died.

She said: “I will cherish the memory of my Dad forever, he was my world and I want to try harder then ever now to help other families who are currently battling this cruel disease. The strength that my Mum shows today is amazing. She is a true inspiration.”

Karen raised £900 and a further £1,335 was raised at her father’s funeral.

If you would like to support Karen visit her Just Giving page at www.justgiving.com/charliesangels2

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down your way

thank you to all those who raise vital funds and awareness to support our work. Here is a small selection of recent events – share your pictures at www.facebook.com/mndassociation

Making his debut: Anthony Chang took part in his first ever marathon in Manchester with a time of 3:55:39 and has raised over £500.

His next event planned is a Paras 10k running with a 16kg back pack. Five of Anthony’s relatives have suffered and died of MND. Day-trippers: Ben Coope has done it again. Sporting an MND T-shirt, Ben and his colleagues, Tim Mincher, Mike Burnett and Mike Watson, took on a 140-mile cycle challenge from Morecambe to Scarborough in a day.

Despite discussing getting the train back home half way through, they pulled together and completed their challenge in honour of Jamie Robertshaw who is living with MND.

Remembering Jane: Cat Tyler took part in the Liverpool Half Marathon in memory of her Auntie Jane who died from MND in 2013. So far, she has raised £1,375. Cat said: “My little girl is called Georgia Jane. Auntie Jane passed away on 21 February, 2013, and Georgia arrived on 13, March 2013 – Jane’s birthday. I have some wonderful friends who sponsored me knowing how much my aunt meant to me and how tough that time in my life was.”

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Karen goes to Holywood: Karen Fraser cycled from Moscow to Holywood to support her friend has MND. They are both towns in Scotland – 60 miles apart. Karen raised £660 which exceeded all her expectations.

In memory of Grandad Mac: Beth Chapman and her mum Lyndsey took part in the Leeds Half-Marathon in memory of her Grandad, Malcolm Milliard. Beth said: “Those of you who know me will know that I absolutely loved my Grandad and when we received the news that he was very ill it hit me and my family like a ton of bricks. It was devastating. We visited him, and everytime he had deteriorated in health, but he never let go of his humour.

We all miss him terribly and would like as many people to support the MND Association as they can. Beth will be taking part in a Tough Mudder and the Great North Run later this year.

down your way Team spirit: With lots of spirit and physical effort, a team from commercial property website, Movehut successfully completed the Morrison’s Great Manchester 10k Run, raising £1,678.85 for Douglas Macmillan Hospice and the MND Association. Movehut’s Social Media Marketing Coordinator and organiser, Jessica Herrington said: “It was a very emotional day, and tears of joy ran down my face as soon as I realised I was a finisher. I am so proud of all my colleagues for completing the race, and thankful to everyone who has supported us and donated to our two charities. This kind of event brings everyone together, and as a team, we now work better together.”

Raise a glass: A fun day at was held at The Gate Inn, Loscoe, thanks to the landlord, David ‘Noz’ Knowles. The event was organised by John Parker after the landlord’s father, also called David was diagnosed with MND. The event raised more than £2,000.

Fundraising is the goal: Cookley Sports Adults Football Team held a tri-football tournament on 17 May. Organised by adult secretary Al Dixon, the event raised over £600 for the Association. Steve Jones, the secretary of Cookley Sports Youth FC was diagnosed last year with MND. He has recently received the People’s Choice Award in the FA and McDonald’s Community Awards. He is due to receive his award in October.

Pictured from left to right are Jason Pearmain, 1st team assistant coach, Jacquie Overs from Worcester Football Association and Steve Jones.

Sponsored silence: Philip Bell sent in this fantastic picture of his grandson, Kai Mullarkey aged just seven years old. Kai raised £761.78 for the Association with a sponsored silence honouring the loss of his grandad’s voice.

For my Mum: Julia Walmsley took part in the Manchester 10k run and raised £2,015 thanks to donations from family and friends. Julia’s Mum, Sandra Cairns is living with MND. Julia said: “My Mum was so happy, her voice has gone now but she managed a beautiful smile to show how happy she was.”

A cracking way to spend Easter: The Team Slug Speed Coast to Coast Cycling Challenge took place over the Easter weekend.

Hywel, Lloyd, Graham and Andy took part and after five punctures, several wrong turnings, four sore bums and eight aching legs, they cycled 157 miles from the west to the east coast of England, raising funds in honour of Hywel and Lloyd’s father, Roger Maggs. They have raised over £2,400.

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your voice

diary dates London Triathlon 8 & 9 August Great North Run 13 September Run to the Beat 10K 13 September Tough Mudder Various dates July-October Bakeit!

All year round Walk to D’feet MND All year round Royal Parks Half Marathon 11 October Great Birmingham Half Marathon 18 October Great South Run 25 October

Regional conferences: London Stansted Airport Sunday 19 July 2015 York Sunday 25 October 2015 Bristol Sunday 23 January 2016 get involved: telephone: 01604 250505 website: www.mndassociation.org email: enquiries@mndassociation.org

We would love to hear from you If your letter is printed on these pages we will send you an MND Association coin keyring.

Please provide your full address with your letter (this will not be printed).

Write to: Your Voice, Thumb Print, PO Box 246, Northampton NN1 2PR or editor@mndassociation.org

38 thumb print Summer 2015

Remembering John My friend John Ryan was diagnosed with MND in December 2008 and sadly passed away peacefully at home on 21 April after a fight to the end, surrounded by people who loved him.

John, who was 51, was cared for at home by his wife Jackie and, as his condition deteriorated, with the support of friends and a great team of carers.

Jackie and John were childhood sweethearts who met at the tender age of 16. They married and went on to have two beautiful children, Sean, 25 and Kiera, 22.

He was a lifelong West Ham supporter and a Hendon rugby player. He captained the Hendon First 15 at least eight times and, when his playing career ended, he was involved with coaching the colts. Even when his condition stopped him from training, he still watched the action from the sideline.

He was a true gentleman who lived life to the full until MND snatched it away so cruelly. John was one of the most sociable people I have ever known and when MND took away his voice, he lost the ability to have a laugh and a joke usually at the

John Ryan, pictured with his wife, Jackie

other person’s expense!

John’s funeral was attended by an overwhelming amount of people who wanted to say goodbye to him. There was not a wake but a celebration of his life which is a testament to how popular John was and how many people’s lives he had touched. Instead of flowers, donations were made to the MND Association, and over £4,000 was raised.

John had so much courage, I never heard him complain even when the disease had taken everything from him, but the one thing it did not take was his cheeky smile.

Rest in peace John, you will never be forgotten.

Irene Marotta, St Albans

Follow us @mndassoc Talking about #MND on Twitter Tquila @tquiladotcom Shhhh team #Tquila is spreading the silence for @mndassoc #SilenceSpeaks Mark Durkan MP @markdurkan Sup’ting @MNDA_NI @CharlotteHawkins #MNDAwarenessMonth @mndassoc #MNDcharter & remembering @TeamJoe_MND #MNDWarriors Katy Styles @WillowKaty Wearing an #MND t-shirt & orange trousers I’ve had more people ask me about @mndassoc @mndcampaigns than ever before Anna O’Neill @Annareporting Carers for people with #MND handed petition to Downing St asking for more support @liampdwyer @Eds30 @BBCLondon949 Joanne Booth @Joannebooth2012 · Jun 10 Race number 7/15 completed for @mndassoc #chickschase3 5K in MK 8 to go! http://www.justgiving.com/jbooth15in15 Rosie Wathall retweeted MND Association Amazing support from the @mndassoc, thank you for sharing my story! #CarersWeek #MNDAwareness #MND #ALS

your voice My friend, my wife

Grief poem

I recently lost my wife Joyce after a twoyear battle with MND. These are the words she took with her.

This moving poem was written by Beth Aboe, whose dad sadly passed away in February.

Thank you for being a part of my life, My lover, my friend, but especially my wife, My heart at this time is broken and sad, But I remember the good times and never the bad.

The whole of my life is broken in two, As part of me’s missing and that part is you, The hurting will go, that’s what people say, But the sadness of loss will not go away, You gave it your best and you fought all the way, But the good Lord decided to take you away.

But sometimes we’ll pause, maybe laugh for a while, Thumb up, a wink and one hell of a smile.

A life that has touched so many hearts will never die.

Love always, Derek.

Mr D McCance, Droylsden

about us: The Motor Neurone Disease (MND) Association

I put my make up on to face the day But deep down I just want to hide away I smile to hide my frown But look in my eyes and you’ll see I’m down

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.

I’ll continue to laugh along But it inside feels wrong I’ll join in conversation But my mind is full of confusion I want to feel like myself But something is missing That sparkle has faded in oneself It feels like I’m drifting

Website

I hope soon the pain fades That pain won’t go in a matter of days I must remember your smile It will carry me for awhile

www.mndassociation.org

Social media Online forum A place for people affected by MND to share experiences and support each other. http://forum.mndassociation.org

I know you’ll be watching me now I hope I’ve made you proud You wouldn’t want me to cry So I promise you I’ll try

Facebook www.facebook.com/ mndassociation

You will never disappear As I will hold you near In my mind and in my heart We will never be apart

Twitter @mndassoc

MND Connect

When you are gone

Our MND Connect helpline offers advice, practical and emotional support and directing to other services and agencies.

My husband, Nigel Casson, has been living with MND for eight years. His bravery and determination in fighting this awful disease inspired me to write this sonnet.

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

When you are gone and I am left alone I will lament your loss.

The hand of doom knocked long ago and brought into our home a merciless disease.

And much too soon our future’s lost.

I mourn our past and wail, as bit, by bit, you start to die.

03457 626262

For gripped in death’s relentless grasp, in pain and frail, your strength is gone, your body weak and stripped.

mndconnect@mndassociation.org

Yet I forget that you are dying when I see the devil dancing in your eyes.

Membership

And even though you’ll never speak again, your loving smile is ever mine to prize.

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

So, vile disease, do try – use all your guile!

We’re living still, and you must wait awhile.

Julie Casson, Via email

thumb print Summer 2015 39

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