Issuu

The magazine of the Motor Neurone Disease Association

Autumn 2016

Fighting MND together Great North Run raises ÂŁ125,000

MND Register err is launched

More councils sign

Pages 10-11

Page 19

www.techcess.co.uk

FROM KEYBOARD TEXT TO SPEECH TO EYE GAZE ACCESSIBLE DEVICES... DOES IT ALL!

works with clients and therapists to supply and support the most appropriate talking technology. •

FREE consultations on most types of talking technology (AAC). We provide everything from keyboard text to speech, right through to more complex eye gaze based devices

•

FREE loans – try before you buy

•

FREE training

•

FREE unlimited telephone support

•

Speedy repairs with loan units available for more complex cases

To ﬁnd out more about how can help you visit www.techcess.co.uk or call 01476 512881.

HAVE YOU TRIED THE ALL NEW ALLORA? Affordable and effective talking technology for people with Motor Neurone Disease.

For a FREE 2 WEEK TRIAL call us now on: 01476 512881

, part of the 2

family

4-5 Thank you! Some of the stories behind Silence Speaks

10-11 Bringing all the pieces together More about the MND Association’s MND Register

12 A dream come true Derek prepares to take to the skies

15 New faces Thumb Print introduces the MND Association’s new trustees

26-27 Information when you need it The latest from care information

31 Ross conquers the River Severn Epic challenge raises £2,000

38-39 Your voice Our members share their views On the cover: David Greaves, who is living with MND, pictured with his sister-in-law Charlotte Michael after she successfully completed the Great North Run. Full story pages 20-21.

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 If you have comments or feedback about the magazine and its content, please do not hes itate to get in touch.

welcome… It seems hard to believe that this issue of Thumb Print marks the end of 2016, another extremely busy year for everyone that is part of our Association. There have been a number of events during the year which we all hope will prove significant in improving the lives of people living with MND and everyone who cares for them. After the publication of the long-awaited NICE Guideline on MND in February both staff and volunteers have been working hard to make sure the new standards of care are implemented by health services across England, Wales and Northern Ireland and this important work will continue well into 2017 and beyond. The discovery of two genes related to the disease over the summer was a very significant step forward for the global MND community, including for the research teams funded by the MND Association who continue to do vital work in understanding the very roots of MND. Meanwhile, our campaigners around the three nations continue to spread the word about MND and the needs of those families who are coping with its devastating effects each day. As a result, more councils have pledged to sign up to the MND Charter, ensuring decision-makers are more aware of the challenges people with MND face and are better placed to make informed and positive choices on their behalf. And so, as we look ahead to 2017 we start the new year with a new five year strategy which gives us all a very firm focus on doing everything we can to support those whose lives have been devastated by MND, while continuing to push the boundaries of MND research and taking a step closer to our shared vision of a world free from MND. I want to take this opportunity to thank you all for your fantastic support over the past year and to wish you all a very happy and peaceful holiday season and New Year.

Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint 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 S ll Light Li ht Chief Executive

www.mndassociation.org

news

www.mndassociation.org

When it comes to taking part in Silence Speaks it doesn’t matter how old you are, whether you are at work or school, part of a bigger team or on your own – all that matters is that you’re willing to help. In this feature we tell the stories of some of those who were inspired to take part in this year’s event, which raised thousands of pounds as well as saying a big…

Thank you! F

OR the majority of those who take part in Silence Speaks it is an important, albeit temporary, reminder of just how cruel MND can be, affecting the speech of more than 80% of those diagnosed. For Alison Pickard, who was diagnosed with MND in 2012, it is the possibility that she may also lose her voice which motivated her to take part in Silence Speaks, raising funds and educating countless people about the realities of MND. The grandmother of three, who is a nurse practitioner and self-confessed chatterbox, found it an eye-opening experience. For the time being, Alison is still able to work and plans to continue to do so as long as possible. She is, however, starting to find walking more difficult, and has to use a mobility scooter at times.

“We’ve been overwhelmed by hundreds of your powerful and moving experiences of Silence Speaks this year and would urge even more of you to take part in 2017.” She said: “At the end of the day you have to expect what everyone else does who has MND. It seems that I have a slow decline, but what happens to others with MND will happen to me eventually.”

UKE Stephens’ father was diagnosed with MND last year and he decided to take part in Silence Speaks alongside his daughter, Daisy. He explained: “Daisy and I decided we would like to increase awareness of the disease and raise money by taking part in Silence Speaks which involved me not speaking for 24 hours and Daisy not speaking for 48 hours. “Thank you to everyone who donated, I am overwhelmed we raised £9,570.”

ENNIFER Benson registered to take part in Silence Speaks on behalf of the Northern Lincolnshire and Goole NHS Foundation Trust’s Adult Speech and Language Therapy team. Jennifer is a Speech and Language Therapist and cross-site Clinical Specialist in Dysphasia and Nutrition working with a team of therapists across two sites at Diana, Princess of Wales Hospital in Grimsby and Scunthorpe. Jennifer took part for 24 hours and other therapists completed the challengein relays. She used her iPad and a range of communication aids were used by others. Team Speech collectively raised £718.85 and a cheque was presented to the Grimsby and Cleethorpes Group.

UPILS from Heap Bridge Primary School, Bury took on Silence Speaks at school and during lessons. Ryan Morris suggested the event to the School Council and it was presented in assembly, as his Grandad had MND. They raised a magnificent £406.50 for the Manchester and District Branch.

ENNIFER Sanders showed amazing support for Silence Speaks during June by staying silent for 24 hours in honour of her Mum Brenda, who wasliving with MND.Family and friends got involved, including daughter Rosie’s school and silent school runs and a silent supper were held. Team Brenda raised over £4,000 for the Mid Kent Branch. The MND Association’s Community and Events Fundraiser, Anita Solan said: “We’ve been overwhelmed by hundreds of your powerful and moving experiences of Silence Speaks this year and would urge even more of you to take part in 2017. The success demonstrates how strongly you feel about supporting a mass participation event highlighting one of the most challenging aspects of the diseases. Huge thanks to everyone who stayed silent and found other ways to communicate in 2016.” To find out more about Silence Speaks visit www.mndassociation.org/ silencespeaks www.mndassociation.org

news

Architect wins MBE in Queen’s Birthday Honours A

N architect from Cardiff who is living with MND has been awarded an MBE in the Queen’s Birthday Honours. Professor Christopher Day will receive the award for services to architecture in recognition of his career which has seen him create buildings around the world. He was one of the first to design, build and teach sustainable architecture and to recognise that ‘place affects the soul more than buildings as objects’. He has also written seven books on the subject, including an autobiography, Dying or Learning to Live, which details his battle with MND. Despite his diagnosis, Christopher still offers consensus-design workshops and silent lectures and says MND has made him more aware of design issues for people who are disabled.

“I prepare Powerpoint pictures and captions and then ask for questions. I draw or write answers under a webcam, projected onto a screen.” He first heard he might be receiving an MBE when he received a letter in May. He said: “I was sworn to secrecy until it appeared in the London Gazette. “I read it online at 6am, but the immensity took some time to sink in.” He explained that he first noticed the symptoms of MND in 1997 when limping started making site visits increasingly difficult. Eventually, he lost his speech but continued to write and hold silent lectures. He said: “I prepare Powerpoint pictures and captions and then ask for questions. I draw or write answers under a webcam, projected onto a screen. “This can take some time and can go wrong, for example, it might show upside down, but works well for dialogue with the audience.” For more information about Christopher’s work visit www.christopherday.eu

www.mndassociation.org

Christopher with his Association Visitor, and newly-elected trustee, Sue Edwards

Posthumous honour recognises scientist’s countless achievements B

IOLOGIST Dr Barbara Knowles MBE, who sadly died from MND in April, has been posthumously awarded with The European Citizen’s Prize in recognition of her voluntary work in Romania. Dr Knowles was honoured by the European Parliament after being nominated by the Romanian MEP for her voluntary work with the Pogany-havas Association in Transylvania. She became involved in numerous projects and fundraising activities, led by local experts, aimed at protecting the area and helping its village communities improve their income. She also hosted HRH The Prince of Wales during a visit to the region in 2011. A celebration of her life was held in June at the Romanian Cultural Institute in London, which was attended by her family including her mother, Elfi and brother, Frank. Elfi said: “Because of MND she could not speak, but she was always so upbeat and optimistic. “She would say, ‘I am well and I have lovely people looking after me.’” “She managed to work right up until the end and I know she would not have had it any other way. “Since she died I have received some wonderful messages which show how Barbara influenced lives in a hugely positive way.”

“Since she died I have received some wonderful messages which show how Barbara influenced lives in a hugely positive way.” Barbara was diagnosed with MND in 2008 and despite being unable to move or speak, continued to work as a senior science policy adviser at the Society of

Dr Barbara Knowles MBE

Biology in London, where she compiled a weekly newsletter about issues of public policy. She also worked in communications at the National Environment Research Council (NERC) and received an MBE in 2014 in recognition of her many achievements. Speaking to Thumb Print the same year,

she said it was important for people living with MND to focus on the activities they can do, rather than those which they can’t. She said: “If you can’t do your previous jobs or hobbies, try something else. “In my view, keeping busy doing something you love keeps you happy, positive and healthy.”

www.mndassociation.org

symposium

Counting down to the International Symposium T

HE world’s leading MND clinicians and researchers will visit Dublin between 7-9 December to attend the MND Association’s 27th International Symposium on ALS/MND. Over the years, the worldwide MND community has used the conference as a focal point and a range of other meetings have developed alongside it, including the annual meeting of the International Alliance of ALS/MND Associations, the Allied Professionals Forum and of course the Symposium itself. Each year the Symposium, which attracts around 900 delegates, is held in a different place, making it possible for local researchers to attend the meeting and to hear from the global research and clinical community.

Above and below, scenes from last year’s Symposium

and agrees dates for future conferences several years in advance. They look at room layouts, capacity, accommodation and catering before signing contracts.

Arranging these conferences is only possible thanks to the support of the International Alliance of ALS/MND Associations and by the host Alliance member, which this year is the Irish MND Association (IMNDA). Chief executive, Aisling Farrell, said: “It is such an honour to host the largest medical and scientific conference on MND/ALS. “We can’t wait to explore and engage with our international colleagues on upcoming advances that might help us realise our collective ambition of achieving a world free from MND.” Behind the scenes, the Symposium is a year-round commitment for the MND Association’s staff. Our conference team books the venue

www.mndassociation.org

“We can’t wait to explore and engage with our international colleagues on upcoming advances that might help us realise our collective ambition of achieving a world free from MND.” Discussion of the programme for the conference begins early too – talks about next year’s event, which is being held in Boston, USA, will begin in Dublin.

Aisling Farrell, chief executive of the IMNDA

For those who cannot travel to Dublin, our Symposium Live page on the MND Association’s website will give everyone the chance to get closer to the action, wherever they are in the world. The page will include videos, photos and links to the MND Association’s research blog to find out more about the science behind the Symposium. In addition, those wishing to find out more can follow he action on Twitter using the hashtag #alssymp.

A meeting of minds at professionals event

MEETING of health and social care professionals from across the world will take place prior to the start of the Symposium on 6 December. The 14th Annual Allied Professionals’ Forum brings together professionals from as far afield as Australia and the USA, as well as members of staff from the MND Association, to discuss the issues facing people living with MND. The first meeting of the Forum was held at the Milan Symposium in 2003 and since then it has continued to grow. At the event in Dublin, there will be 16 speakers, including four from the MND Association. The MND Association’s Director of Care (North), Steve Bell, co-chairs the Forum alongside Sara Feldman from the ALS Hope Foundation which is based in America. He said: “The Forum is an excellent example of professionals from across the world coming together and sharing information in the hope that we can continue to improve the lives of people affected by this devastating disease.

Delegates pictured at the meeting in 2014

“It’s a great opportunity to get adult health and social care professionals to rethink their approach and consider everyone’s needs. This should help families with children to get better support more quickly.” “By fostering good relations and hearing more about the day-to-day experiences of professionals caring for people living with MND around the world we can implement any necessary changes to the way we work and offer the very highest standards of care possible.” The MND Association’s Children and Young People Development Manager, Karen Welsenaer will be among those speaking the conference. She will be describing a new Karen Welsenaer way of working to encourage professionals to consider the needs of the whole family when planning care for a parent or guardian living with MND. Karen said: “It’s a great opportunity to get adult health and social care professionals to rethink their approach and consider everyone’s needs. This should help families with children to get better support more quickly.” To find out more about the Forum visit www.mndassociation. org/alliedprofessionals-forum www.mndassociation.org

research

FFinding inding the fingerprints of MND

OREE than OR t th £2 million raised by the Ice Bucket C Ch Chal hal alle alle le Challenge is being used to help fund the biggest rese re sear se a project in the MND Association’s history. research Calllllled Ca d A Multicentre M lt Mu Called Biomarker Resource Strategy in ALS or AM MBR BRoS oSSIA oSIA A for fo orr short, s AMBRoSIA the project will hunt for the specific ‘f‘fin in nge erpri rp prriint nts’ s’ which s’ w ‘fingerprints’ are unique to MND, called biomarkers, wh hic ich h sh show show o wh which when the disease has begun. Samples of skin, blood and spinal fluid will be taken from more than 900 people who are newly-diagnosed with MND, creating the largest collection of MND samples in the UK. Researchers from Oxford, Sheffield and London will try and identify new biomarkers for MND, as well as learning how the progression of the disease varies from person to person. Prof Martin Turner said: “AMBRoSIA is the MND Association’s biggest ever single investment in research and it looks to deliver better ways to diagnose this disease and better treatments for the future.” A list of studies looking for participants can be found at www.mndassociation.org/takepartinresearch.

If you are living with MND, you can join our MND Research List. Visit www.mndassociation.org/researchlist for further information.

Wheelchaircars.co.uk

REGISTER of people ple n living with MND in England, Wales and Northern Ireland is being created in a fiveyear research project funded by the MND Association. ted there are At present, it is estimated g with MND up to 5,000 people living K. at any one time in the UK. ure, based on a number of assumptions, This is a calculated figure, but if we are to understand why people get MND, then having accurate numbers is vital. In the shorter term, the MND Register will help us improve the services the Association provides and make sure they are available to those who need them most.

“Creating a national MND Register will allow researchers the opportunity to explore the environmental causes of MND in more detail.” FREE NO OBLIGATION HOME DEMONSTRATIONS USED VEHICLES FROM £2995

Tel: 0161 793 5934 Full details on our website, www.wheelchaircars.co.uk

www.mndassociation.org

The MND Association’s Director of Research Development Dr Brian Dickie said: “Although genetics is giving us an important insight into the disease, the majority of cases are likely to involve a complex combination of genetic predisposition and environmental factors. Identification of these environmental factors has been a slow process, with little definitive progress to date, but there is increasing evidence that they are indeed there to discover. “Creating a national MND Register will allow researchers the opportunity to explore the environmental causes of MND in more detail.” A database and website have been built and some people living with MND, who attend MND clinics in Oxford and King’s College in London have already signed up.

Pictured from left to right are Sarah Martin, Professor Ammar Al-Chalabi and Anna Kulka from King’s College, London who are working alongside colleagues from the John Radcliffe Hospital/University of Oxford on the MND Register project.

A wider roll out at MND clinics across the three nations is planned and people living with MND will also be able to take part online via the project website. Lynn Ossher is the project manager for the MND Register in Oxford. She said: “I have contacted the Association’s Regional Care Development Advisers (RCDAs) and MND care centres around the country to tell them about the MND Register prior to its launch. “Currently the website and databases which will host the register and store the information are being tested in small areas of the country. “If you attend either Oxford or the King’s College London Care Centre then you might have already agreed to take part in the MND Register already. Other care centres will be getting involved in the coming months. “Another way to take part is so-called ‘self registration’. The first stage is for you to enter your details on the website, a

clinician will then have to confirm that you have MND. We will let you know as soon as the project website is live.” In time, the MND Register will answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people differently. It will connect people with MND to researchers, including those conducting clinical trials. It will also provide valuable information to guide the future development of care services, enabling the MND Association to campaign for better services in the areas which need them.

More information about the MND Register is available on the MND Association website at www.mndassociation.org/ mndregister, or by emailing mndregister@kcl.ac.uk.

www.mndassociation.org

news

Learning to fly is a dream come true for Derek

HEN Derek Dente was a boy he loved nothing more than to watch planes landing and taking off at Gatwick Airport. Now Derek, 53, is preparing to turn his dream of learning to fly into reality – despite living with MND. Thanks to Flying Scholarships for Disabled People (FSDP), Derek from Crawley has started to learn to fly after being awarded a scholarship at their flying school. He said: “I was searching the internet looking for things disabled people could do and I saw the flying scholarships and applied. Since I was diagnosed there have so many things I have unable to do so it was fantastic to hear about something I could do.”

Since it first opened in 1983, FSDP, which is based in Fairford, Gloucestershire, has trained more than 400 people. Chairman, Keith Bayliss said: “Learning to fly changes people’s lives. “Because of their disability, our scholars are often told what they can’t do. Our aim is to change that perception and give them the confidence to show themselves and the world what they can do. “Disability is no barrier to learning to fly. Once they are in the air scholars talk about having found freedom – something they don’t have on the ground.” If you are interested in finding out more about flying scholarships, visit www.facebook.com/ FlyingScholarshipsForDisabledPeople

‘I will never stop fighting and fundraising for my Dad’

UST over a year after her father was diagnosed with MND, Sonia Dickey has taken to the skies to raise money for the MND Association. Sonia, from Northern Ireland, took part in the skydive in July, raising more than £2,300.

Sonia takes to the skies during her skydive

www.mndassociation.org

Her father, James, was diagnosed with MND in March 2015 and sadly died on 2 September. He was cared for by his wife, Patricia, Sonia, her brothers and sisters, Tanya, Dominic and Declan and her niece Skye. She said: “In a year, I saw my Dad, who is my hero, go downhill so fast. “He couldn’t eat, drink or speak very well. He depended on his ventilator 24/7 and we took sharing the care between us.” She explained how she had raised money for the Association over the past two years, but this year, decided to set her target a little higher. Sonia, who works as a hairdresser, said: “I decided I wanted to do something big for my Dad and what’s bigger than a skydive!

Sonia and her dad, James

“I set my fundraising target at £1,000 and within three weeks I had beaten it. I had another collection day at work and my kind, loving clients raised over £1,000. “My skydive was unreal – the joy, the pride and all the tears, because I knew I had done my Daddy proud. I will never stop fighting and fundraising for Dad and MND.”

your stories

The cares of a carer Howard Brayton describes his life as a carer for his wife Sue and how MND has changed both their lives forever.

ELL the paramedics have just left; how can anyone complain about the National Health Service? I’d rung 111, as we had been advised to do if a fall occurred. Paramedics Jo and Dave took over, assessing the situation with calm, reassuring, friendly, and unhurried smiles, giving advice and sorting out the problem. “Sue is my beloved wife, mother of our five children and grandmother of eight. She has been fighting Primary Lateral Sclerosis (PLS) a rare form of MND for 30 years, with her enviable, patient and indefatigable spirit. “It had all started with a loss of spring in her left step, spreading inevitably to her hip, so that walking unaided became impossible. But the college of further education where she was a head of department, relocated her office to the ground floor. Unfortunately, when her voice weakened to a strangled whisper, and she could no longer answer the phone or chair a meeting, she was left with no alternative but to take early retirement on medical grounds. That was 15 years ago.

“As her full-time carer, I accepted voluntary redundancy from my position in education and together we headed off to the sun; a cottage in Portugal’s Algarve.” “As her full-time carer, I accepted voluntary redundancy from my position in education and together we headed off to the sun; a cottage in Portugal’s Algarve. For the next 10 years we visited as often as possible. Sue benefitted from the climate and the diet; well so did I! “18 months ago we sold Casa da Musica. Negotiating the hills, the cobbled streets, and the lack of ramped curbs, with a wheelchair, was becoming too much for my 76 year old body; as was the painting, decorating and gardening.

Howard Brayton and his wife Sue, who is living with MND

“Airports are well geared to look after passengers with disabilities, but the travel took its toll on Sue. If you think of a day as morning, afternoon and evening, Sue can do two of them. Travel time to Portugal used three, and she lost two days recovering in bed. We vowed to reinvent ourselves, taking short breaks in our own country, visiting places we had only read about, becoming members of English Heritage and the National Trust, rekindling friendships lost over time and enjoying every day as it presented itself; ‘Every day is a special occasion, celebrate it.’ “We realise that none of this would have been made possible without the amazing support of so many professionals, agencies, services, societies and volunteers, who are all there, ready to answer a phone call or an email and I know they are there for you too. Back to the story. “When I helped Sue out of bed this morning, her legs decided to crumple beneath her, depositing her on the carpet

with her right leg buckled beneath her. From past experience, we know I am not in a sufficiently robust physical shape to manipulate her back to bed. So, after cries of excruciating pain, hers, not mine, we ensured she was warm and comfortable where she was, and called for help. That’s where Jo and Dave come in. “It’s not quite what I had planned. Lunch with friends has been postponed, and I have been excused from choir practice, but that is the nature of the role of a carer. Make plans by all means, but be prepared for them to be derailed at a moment’s notice. Life has changed for both of us, out of all recognition. Both of us have forgone individual pursuits, now we plan, spend and enjoy all our time together. So it might be minus two degrees outside, but the sun is shining in a crystal clear blue sky; Sue is sitting up in bed, planning our next excursion on her iPad; I’ve written this piece in gratitude, and… oops, it’s lunchtime! Must go. All’s well with the world.” www.mndassociation.org

news

More than 160 delegates attended the event

Delegates look to the future at Association’s annual conference and AGM

ORE than 160 delegates attended the MND Association’s conference and AGM in September. The event, which was held at the Radisson Blu Hotel at East Midlands Airport, gave members the chance to meet members of staff and find out more about the Association’s work and priorities for the future. Alun Owen, Chair of the Association’s Board of Trustees, opened the day by talking movingly about his own personal reasons for wanting to volunteer for the Association, while chief executive Sally Light presented her highlights of the past year and set out her vision for the future. Delegates were then invited to take part in workshops on a variety of subjects including Campaigning and Awareness and the NICE Guideline. After lunch, the formal business of the AGM got underway. Retiring trustees Peter Bickley, Anne Bulford OBE, Dr Andrew Fowell and Charles Reece officially stood down and

www.mndassociation.org

newly-elected trustees, Sue Edwards, Steve Parry Hearn, Charlotte Layton, Heather Smith, Janet Warren and Nik Sharma took office. The day’s keynote speaker, Professor Dame Pamela Shaw, then explained more about her work at the Sheffield Institute for Translational Neuroscience (SITraN) and the strides being made into research into new treatments for MND. Sally brought the day to a close by thanking everyone for attending and for continuing to inspire the Association’s work. Next year’s conference and AGM will be held on 8 July at the Radisson Blu Hotel at East Midlands Airport and full details of how to register will be available in Thumb Print nearer the time and on our website. If you were unable to attend the conference and AGM in person you can still catch-up online at www.livestream. com/eventstreamingcompany/mnda

Chief executive, Sally Light addresses delegates

The AGM was a chance for people living with MND to meet with members of staff

Jean Waters, who is living with MND, meets retiring trustee Anne Bulford OBE

Introducing our new trustees

OCUSSING on doing everything possible to improve the lives of people living with MND will be at the top of the agenda for the MND Association’s new trustees. Five candidates were elected following a vote among the MND Association’s members and the results were announced at the annual conference and AGM. Heather Smith, from Swindon, first became involved with the Association after her partner, Steve was diagnosed with MND in 2009. After he died in 2012, Heather started volunteering for the North Wiltshire Group where she is now Vice Chair. She is also a Campaigns Contact and appeared in the MND Association’s 2016 Awareness Month campaign, Shortened Stories. She said: “I am very proud and honoured to have been elected. “I am interested in doing everything we can to improve quality of life among people who are living with MND and supporting them to take part in any activities they want to. I also want to focus on broadening the MND Association’s reach.”

Heather Smith

Janet Warren

Sue Edwards

Working towards improvements in specialist care will be a priority for Janet Warren, from Northamptonshire, who lost her husband David to MND last year. She said: “I cared for David and we had to travel long distances from our home to get the specialist care he needed. I feel we need to improve these services and try to ensure they are more ‘joined-up.’ Sue Edwards from Cardiff also cared for her husband before he sadly died from MND in 2012. She now supports the Association by volunteering as an Association Visitor and through her work as Secretary and Chair for the Cardiff branch. She said she hoped to use her experience to continue making a difference to others affected. She added: “I always give 100% to

Steve Parry-Hearn

Charlotte Layton

Dr Nik Sharma

everything I do and I feel very honoured to now be a trustee.” Steve Parry-Hearn, from Swansea, was diagnosed with MND in 2015 and currently works in the welfare to work sector, while Charlotte Layton, from Manchester, is the Deputy Director of HR at an NHS mental health and community services trust. She has also campaigned to raise awareness on behalf of the Association. Dr Nik Sharma, who is a consultant neurologist at the National Hospital in London was co-opted by the board to provide current neurological experience following the resignation of Andy Fowell. He said: “I have never done anything like this before, but I am really excited about the opportunity to work more closely with the MND Association.”

from our chair Thank you to all of you who came along to the MND Association’s annual conference and AGM. As ever, it was a wonderful opportunity for the MND community to not only share their thoughts and ideas about shaping our work in meeting the needs of everyone affected by the disease, but also just to spend some time with members of the MND family. If you haven’t had the opportunity to attend an AGM or conference, please think about coming along to the next one – you will make some wonderful friendships. At the AGM, we heard about the

highlights of the past year and how, despite the external challenges which we know lie ahead, we are in a strong position to push forwards with our Association mission. As Chair of the Board of Trustees it also gave me great pleasure to introduce our five newly-elected trustees and you can read more about them and their plans for the future above. A total of 13 members put themselves up for election this time and I want to take this opportunity to thank them again, and all of our retiring trustees, for their hard work and dedication to the Association. As we approach the end of 2016, our focus now is very much on the launch of our new five-year strategy, which will be published in January. While we have achieved a great

deal in the past year, we also know there is still much more we need to do to improve the lives of those living with this vicious disease. To achieve this, our Association strategy – which can be likened to a ‘road map’ – will direct our work from 2017 to 2021. It has been put together with input from a wide range of people – MND Association staff, our members and most importantly, people who are living with MND. The result is that we will have a focussed strategy which will steer us further towards our goal of supporting everyone we can who is affected by MND and towards a world free from MND. Thank you for your support this year and I look forward to working with all of you in 2017 and beyond.

www.mndassociation.org

news Buy a ticket – and help support our fight

Y taking part in our Christmas raffle you could help us do more to improve the lives of people living with MND and their families. Every ticket sold supports our vital work to improve the lives of people

It only takes show your su D

living with MND and enables us to fund world class research to find improved treatments and ultimately a cure. More than 70 prizes are up for grabs in our festive fundraiser and you can take part by visiting www.raffleentry. org.uk/mnda or by calling our ticket hotline on 0345 6016936. You can also order books of tickets to sell to friends and family by emailing raffle@mndassociation.org. Our Summer Raffle proved to be a huge success raising over £100,000. Congratulations to all our prize winners including Patricia Birnie, who won the first prize of £4,000, Adam Lacey, who won the second prize and Eveline Billingham who came third. A huge thank you to Adam, who kindly donated his winnings back to the Association in further support of our work. He made his donation through The Peter John Lacey Tribute Fund, an MND Association Tribute Fund created back in 2004 in memory of Adam’s dad, Peter. He said: “I lost my Dad to MND aged 17. When we found out he was ill, the MND Association was a great source of information and support. I don’t do enough fundraising - life gets in the way, so I think the raffle is a great, and easy way to support the Association and the brilliant work it continues to do.” The MND Association’s Christmas Raffle closes on Monday 9 January and the lucky winners will be drawn on Monday 16 January. Regulations mean entry is open to all UK residents excluding Northern Ireland, Jersey, Guernsey and the Isle of Man.

www.mndassociation.org

O you have a day or evening, an hour, or perhaps just a minute to help support our mission of a world free from MND? While volunteering for the Association doesn’t have to take up much of your time, it can make a tremendous difference to our work – and to the lives of those living with MND. Julie Reece first became involved with the MND Association when her former father-in-law was diagnosed with MND.

“With MND Connect I answer calls from people living with MND, people who are affected by the disease as well as health and social care professionals.” The mother-of-two now supports people living with MND by offering information and support through the MND Association’s MND Connect helpline and through her work with the Milton Keynes Branch of the Association. By day, Julie, who has a background in working with MND patients at the Cynthia Spencer Hospice in Northampton, works for the NHS. She said: “A lot of the skills I have used at work are transferable to the volunteering work I do for the MND Association. “With MND Connect I answer calls from people living with MND, people who are affected by the disease as well as health and social care professionals. “My work with the branch means that I get involved with fundraising events and meetings. “It’s incredibly rewarding and helps me put life into perspective.” Alana Hughes is 23 and lives in Belfast, Northern Ireland. She first looked to the MND Association to provide information when her stepdad was diagnosed with MND in 2010. Since then, she has been a fundraiser,

By volunteering for the MND Association you could make a real difference to the lives of people living with MND

a Campaigns Contact and a committee member of the Northern Ireland branch of the MND Association. She said: “The past year has been hectic for me – juggling a Master’s degree, two jobs and some form of a social life along with volunteering, and the MND Association has been immensely supportive. “I have never felt pressured to take on more than I feel is manageable, and with no specific hours required I can fit in campaigning and contacting local representatives when it suits me. “One hours’ worth of mass-emailing councillors on a Thursday evening led to the motion for Belfast City Council to be the first in Northern Ireland to adopt the Charter! “Volunteering is flexible and you can give as little or as much of your time as

a minute to support Models take to the catwalk during the event at M&Co in Bridlington (Picture courtesy of the Bridlington Echo)

Shows raise funds and awareness

possible, but that fraction of your week could mean a huge amount to those living with MND and their families. “My stepdad smiles when he sees me running from the house in my MND Association T-shirt, and I’d recommend getting involved to anyone.”

“Volunteering is flexible and you can give as little or as much of your time as possible, but that fraction of your week could mean a huge amount to those living with MND and their families.” Another way you can support our work is by taking part in SnapAction, which offers people an alternative way to support the MND Association by making quick actions which benefit our cause.

They require no long-term commitment, are very quick to complete and are free to do – they can be performed from home, work, school or on the go. One of the MND Association’s campaigners Greg Broadhurst said: “SnapAction is a really simple method to have people take a couple of minutes to help the MND Association, something I was pleased to support, and encouraged by highlighting joining the campaigns network as just one way to help!” You can find out more about how to join SnapAction by visiting www. mndassociation.org/snapaction If you, or someone you know, needs help, support or more information about MND, please call our MND Connect helpline on 0808 802 6262 or email mndconnect@ mndassociation.org

undraisers with a passion for fashion have been busy raising funds and awareness on behalf of the MND Association. In Jersey, a fashion show was held at Government House in June to celebrate the 25th anniversary of the Association’s affiliate. The event was attended by the Lieutenant Governor General Sir John McColl and patron William Bailhache, who is also the island’s bailiff. Branch Secretary Janine Borny said it had been a wonderful event. Meanwhile, in Bridlington more than £600 was raised from a fashion show held at the town’s branch of clothing store, M&Co – organised by the Scarborough and Bridlington Group. Around fifty people attended the event, which was held in the summer.

Jersey fashion show event – pictured from left to right are Wendy Lees, David Keevil, Janine Borny, William Bailhache, Mrs Bailhache, Lady and Sir John McColl, Margaret McGovern, Julie Le Mottee and Ros Harris. (Picture courtesy of the Jersey Evening Post)

www.mndassociation.org

news

Northern lights CityUK ide Media tured outs ic p t rs u adh Greg Bro

OME of Manchester’s most iconic landmarks turned blue and orange to celebrate Global MND Awareness Day. Manchester Town Hall, The Trafford Centre and MediaCityUK in Salford were bathed in blue and orange lights thanks to the efforts of volunteers from the Association’s Manchester and District Branch. Volunteer Stacey Kerr said she had decided to contact many of the city’s landmarks to see if any of them could be lit up during the month. Staff at Manchester City Hall agreed and it was illuminated twice – once on 20-22 June and again on 25-26 June. She said: “It was an off-the-cuff idea. I approached the council wondering if they would help us, they agreed to do it, and the event gathered momentum from there. “I was blown away by the support on the day at the town hall, we even had exclusive access to the front of the building for the big moment. “I want to thank Manchester City Council and the Trafford Centre for their help. I was proud to arrange this in memory of my Mum, Gerry Kerr, whom we lost to MND and I had my family around me for this very special moment.” The MediaCityUK event was organised by branch campaigner, Greg Broadhurst, who sadly lost his Grandad to MND. He said: “I wanted to secure a venue in my Grandad’s home city of Salford, as a tribute to him. “What I did not expect were the

www.mndassociation.org

stunning lengths Niamh, Clive and the MediaCityUK team went to, buildings were lit and flashing orange and blue and the bridge over the water created a stunning visual effect. A huge thank you to MediaCityUK, a stunning end to Global MND Awareness Day!”

“Inspired by Stacey’s work, I wanted to secure a venue in my Grandad’s home city of Salford, as a tribute to him.” The Steve Prescott Bridge in St Helens, Merseyside was also lit up in blue, orange and white for the whole of June. Sarah Lewis, who is a young ambassador for the MND Assocation, sadly lost her father to MND in 1994. She approached St Helens Council to ask if the bridge could be illuminated during Awareness Month and they agreed. She said: “Last year, a simple picture from Alana Hughes, Campaigns Contact for

Greg Broadhurst’s Grandfather, John, who died from MND

Stacey Kerr’s Mum, Gerry, who sadly died from MND

the Northern Ireland Branch of the MND Association, inspired me to do the same in my hometown. “To raise more awareness I had the story printed in the local press and I overheard a couple of people talking about the colours as I was walking over the bridge. This was one of the proudest moments of my life – it got people talking about motor neurone disease. “A big thank you to St Helens Council for making this happen.” Sarah also organised a bucket collection which raised £1,250 and a summer ball, held on July 2 which raised an amazing £3,547.

Volunteers from the Manchester and District Branch outside Manchester Town Hall

Councils adopt the MND Charter C

OUNCILS in Southwark, Brighton, Surrey and Southampton have become the latest to sign up to the Association’s Charter. Councils across England, Wales and Northern Ireland are being encouraged to sign up to the Charter – a five-point document outlines the care and support people living with MND and their carers should expect to receive. It is hoped that the more councils adopt the Charter, the more likely people living with MND are to receive the right care, in the right place, at the right time, wherever they live. In July, Southwark became the first London borough to adopt the Charter and the 18th council to do so in England, Wales and Northern Ireland.

Pictured from left to right are Councillor Karen Barford, Bernard Duncan, Liam Dwyer and Councillor Daniel Yates at Brighton and Hove City Council.

“I am so proud the council adopted it. I hope it leads to more awareness and better services for people with MND in my community.” Lorraine Sheahan, who sadly lost her father Michael to MND in 2014, led the campaign to get the council to adopt the Charter. She explained: “I approached Southwark Council because I wanted to do something to help make it easier for other families who are living with this terrible disease. “I am so proud the council adopted it. I hope it leads to more awareness and better services for people with MND in my community.” Lorraine’s local councillor, Anood Al-Samerai, tabled the motion for the council to adopt the Charter. She said: “I am thrilled Southwark is leading the way by becoming the first London borough to adopt the MND Charter. After meeting Lorraine and hearing about her experiences, I was really keen to help to raise awareness of MND and to make sure

The MND Association’s National Campaigns Manager Raj Johal is pictured above right, with left Councillor Anood Al-Samerai and Lorraine Sheahan at Southwark Council.

Lorraine Sheehan and her father Michael

that services in Southwark at least, are responsive and appropriate.” And the Charter already seems to be making a difference. Nancy Arif and her family were struggling to get the right equipment to help their dad who is living with MND. The family read about the MND Charter in their local newspaper and immediately made contact with their councillor asking for help. Councillors from Southwark Council are now in touch with the MND Association’s South London Group to ensure the family gets the support and services it needs.

Meanwhile, the Charter has also been adopted by Brighton and Hove City Council. Liam Dwyer, who is living with MND approached the council alongside Bernard Duncan, who is deputy chair of the East Sussex Branch. They had the chance to discuss the Charter with Health and Wellbeing Board councillor Daniel Yates. Mr Yates said: “I was delighted to meet volunteers from across Sussex to discuss how the council can support people with MND locally and I am thrilled our council has now officially adopted the Charter.” As Thumb Print went to press Surrey County Council and Southampton City Council also signed up. For more information visit www.mndcharter.org or call the Campaigns Team on 020 7250 8447. www.mndassociation.org

fundraising

Fighting MND with

Just a few of the 300 runners who took part in the Great North Run on the MND Association’s behalf

OVED ones whose lives have been devastated by MND were very much in the minds of runners taking part in the Great North Run in September. A total of 300 runners – our biggest team ever - took part in the iconic event on behalf of the MND Association to raise over £125,000 and awareness of the disease. Among them were the Greaves family – 12 members of the same family running under the name Team 2Fingers2MND. They were inspired to take part after David Greaves was diagnosed with MND just after his 30th birthday in June last year. He sadly died days after the Great North Run was held. His father Andrew said: “In 2014 David ran the length of Hadrian’s Wall, a distance of 70 miles in a single day. David and his wife Philippa also raised £12,000 for the MND Association by climbing Mount Kilimanjaro last December when David was already seriously disabled.” Andrew explained that he had taken

www.mndassociation.org

part in the Great North Run several times before, but for his wife Sarah it was a new experience. Andrew said: “Sarah hadn’t been a runner until now and she took part with steel pins in her hip from an injury she sustained in 2009. “David was impressed by how many people turned out on his behalf and he knew all about the physical and mental challenges the Great North Run poses – which are nothing to those which he has tackled.” So far, Team 2Fingers2MND has raised a total of £45,633 through various challenges. David is pictured on the cover with his sister-in-law Charlotte who also took part. eith Hall who is 75 lives in Newcastle and took part in his 25th Great North Run in memory of his sister-in-law Irene who sadly died from MND seven years ago. He explained: “Before Irene was

diagnosed we didn’t know a lot about MND. She was involved with the MND Association throughout her battle and she supported research too. “Seeing the pain that everybody went through and knowing how close my wife was to her encouraged me to start fundraising for the Association. “I was first introduced to the Great North Run in 1991. I knew I’d always fancied it and I rang up, got a place and started training. I’ve had the bug ever since. I just run on my own, but I enjoy it.” ROTHER and sister team, Jonny and Hayley Scott took part in memory of their dad Neil, who died from MND in May last year. Hayley said: “My Dad was my hero! He was very sporty, taking part in triathlons, swimming galas and running. He was up for adventure and even went touring around South America on his motorbike.” Hayley explained that Neil had taken

Courtesy of the Chronicle

every single step

Clockwise from top left: Keith Hall, Hayley and Jonny Scott pictured with two fellow runners, Craig Thompson and Judith Miller

part in the Great North Run 25 years ago and that he would be proud of what the duo have achieved.

“It was an absolutely incredible day and lovely to meet so many of our runners at our after-race reception and share in their success. She said: “I remember going for little runs with him when he was training for this. He told us all about the Great North Run when he got back and showed us his medal. He said it was a great event.” OT only did Craig Thompson take part in the Great North Run, he also did a Coast to Coast cycle beforehand and then cycled home! He was taking part in the Great North Run for the tenth year running after losing his mum to MND. He said it had been a fantastic

experience and that the crowds had been amazing. He said: “My wife keeps telling me that after ten years I have done enough, but when it gets close, I can’t help it! The crowds are fantastic!” OMMUNITY matron, Judy Miller from Suffolk, took part in the run wearing leopard print leggings in memory of one of her patients who lived with MND. Judy, who is 55, has raised almost £2,146 so far for the MND Association and also ran the Bungay Black Dog Half Marathon and the Newham 10k earlier this year. The mum-of-two, who is married to Alan, took on the Great North Run for the second time in ten years after she began working closely with two people living with MND. Judy said: “The leopard print leggings were worn in memory of the fabulous

Laura; the first patient I had significant contact with affected by motor neurone disease. During an end of life/advanced care planning conversation she disclosed, with a twinkle in her eye, that she fancied wearing some leopard skin as her final outfit. “The leggings were donated by a very good friend of hers so they are even more special.” Stephanie Steward, Events Fundraiser for the MND Association said: “It was an absolutely incredible day and lovely to meet so many of our runners at our after-race reception and share in their success. “Each one had their own reasons for running and their support is truly appreciated. The funds raised from the event will make a vital difference to those affected by MND. “We are so proud of all of our runners and their supporters.” www.mndassociation.org

campaigns

Campaigners look to the next challenge C

AMPAIGNS Contacts from across England, Wales and Northern Ireland came together for a weekend of networking, training and discussions. Our volunteers – who are the driving force behind the MND Association’s local and national campaigns – met in London in July to get to know each other and plan their work for the months ahead. The MND Association’s Local Campaigning Team Leader, Alice Fuller, said: “Once a year, we come together for a weekend of training and workshops. It’s also a chance to reflect on what we’ve achieved in the past year, rejuvenate for the year ahead and have fun! “Our Campaigns Contacts attended workshops on influencing local politicians, involving others in their actions and campaigns planning, as well as discussing national campaign strategy with staff. “There was a chance to chat over dinner, watch an inspiring film about social change as well as a personal message of encouragement from the broadcaster and Patron of the West London and Middlesex Branch, Jeremy Vine.” Greg Broadhurst, a Campaigns Contact from the MND Association’s Manchester and District Branch said: “It was a great way to meet people from across the country and exchange ideas, successes and ways to build on the great work so far. “It’s also good to meet newer Campaigns Contacts and help them strengthen the team to spread our message further.” If you are passionate about making a positive change for people with MND, have good communication skills and a couple of hours to spare each week you could join our Campaigns Contacts team.

“It’s also good to meet newer Campaigns Contacts and help them strengthen the team to spread our message further.” For more information about what’s involved, visit www.mndassociation.org/campaignscontact or get in touch with the volunteering team on 0345 6044 150 or via email at volunteering@mndassociation.org If you have less time available you could join our Campaign Network email list – more details are available at www.mndassociation/campaignwithus You can also follow also the latest developments on Twitter at www.twitter.com/mndcampaigns or on Facebook at www.facebook.com/mndcampaigns Kathy Styles

www.mndassociation.org

Mark Styles

‘I came away both awed and inspired’

HRIS Hoskin, a newly-recruited Campaigns Contact from the South Lancashire branch, tells of how the weekend inspired her. She’s now asking her local council to adopt the MND Charter. She said: “From the moment I arrived at the venue, any nerves were dispelled by the warmth of the greeting I received from both staff and my fellow Campaigns Contacts. The weekend was fantastic. “We covered so many topics, had great guest speakers, some fantastic discussions and on top of that a lot of fun. I really felt valued and that my voice was heard just as much as seasoned campaigners. I came away both awed and Chris Hoskin inspired by the stories from my fellow Campaigns Contacts. I knew that I could go on and now try some campaigning actions. “If your group or branch does not have a Campaigns Contact and you are thinking about volunteering for this role, I would urge you to have a go. You will be doing a great job for the cause, will be warmly welcomed and meet some fabulously inspiring people.”

WHY SIT IN THE BACK?

INNOVATIVE SOLUTIONS CUSTOMISED FOR UPFRONT WHEELCHAIR PASSENGERS & DRIVERS Sirus build the highest quality conversions all backed up by our industry leading 3 year warranty. :H RʲHU DʲRUGDEOH ʳQDQFH SDFNDJHV DQG Approved Used cars to suit all budgets. Ask us about our new and exclusive Self Lifting Ramp System.

Visit our website to build your own Sirus car

www.sirusautomotive.co.uk Call 0121 505 7777 to book a no obligation home demonstration

www.mndassociation.org

campaigns

Research working group created to discuss the future after Brexit

he MNDAssociation has joined a new working group on the EU set up by the Association of Medical Research Charities, to try to secure the best possible future framework for medical research after Brexit. Britain’s decision to leave the European Union was undoubtedly a milestone in our history, and a surprise to many. But despite the vote in June, we’re not ‘out’ yet - the UK remains a full member of the EU until the Government gives formal notification under Article 50 of

the Lisbon Treaty, which has yet to happen and there is considerable uncertainty about when it will. There has not yet been any agreement about what our status will be once we have left and it is likely that the uncertainty will continue over the coming months and years. In the meantime, the Association will be keeping abreast of developments and will ensure we are aware of the implications.

MPs meet twice to discuss MND

ND was the focus of two meetings in Parliament in July. The All-Party Parliamentary Group (APPG) on MND held its AGM at the beginning of the month to elect new officers for the coming year. The APPG brings together MPs and peers with an interest in MND and acts as the voice of people with MND in Parliament. Madeleine Moon MP, who lost her husband to a rare genetic form of MND, chairs the Group. Paul Blomfield MP and Mary Robinson MP were elected as Vice-Chairs and Chris Evans MP is the Secretary. The MND Association provides administrative support to the group.

Pictured from left to right are Lord MacKenzie of Culkein, Mary Robinson MP, Madeleine Moon MP, Chris Evans MP and Paul Blomfield MP

Later in July, the APPG held a joint meeting with the APPG on Parkinson’s, which focussed on research. Professor John Hardy from University College London spoke to the groups about his research into genetics.

www.mndassociation.org

MND Association chief executive Sally Light pictured at the roundtable event alongside Jeremy Vine, who is also Patron of the West London and Middlesex Branch, right and the MND Association president Professor Sir Colin Blakemore

Getting the best from the NICE guideline

OW the MND Association can use the NICE Guideline on MND to support people living with MND was discussed at a roundtable event held in London. Hosted in the BBC’s historic Council Chamber by the MND Association’s retiring trustee Anne Bulford OBE and chaired by TV and radio presenter, Jeremy Vine, the event brought together representatives from 17 health and social organisations to discuss how the guideline can be implemented. The guideline was published in February and sets out what people with MND and their carers should expect from the NHS and social care. During the meeting, Bob and Helen Keats, Jean Waters and MND Association trustee Janis Parks, all spoke about how MND has affected their lives.

“The guideline will help them understand what care they should be getting.” The MND Association’s chief executive, Sally Light said: “It was fantastic to have such breadth and depth of expertise around the table and to hear how committed each organisation is helping us to achieve improved care for people with MND and their carers. “We need the help of everyone present to ensure the NICE guideline makes a difference to everyone with MND and their carers across England, Wales and Northern Ireland.” For more information about the guideline you can download our factsheet: A1 NICE guideline on MND at www.mndassociation.org or via MND Connect on 0808 802 6262.

care

MND Alert Wristband available

OLLOWING requests from people with MND and carers, our new alert wristband for MND is now available. It can be worn at all times if required and is designed to let hospital and emergency staff know that the wearer has MND. It adds to our other alert items, such as the MND Alert Card, which can be carried in a purse, wallet or pocket, and our Understanding my needs form, which enables someone to provide more detail about their needs. The wristband carries a clear caution about using oxygen with MND. If you have MND, and experience any problems with breathing, the use of oxygen therapy may make you more likely to retain carbon dioxide CO2. This can make things worse and, in some cases, can

be dangerous. However, in emergency situations, paramedics and hospital staff may not be aware that you have MND or of this particular risk. As alert wristbands are familiar items for emergency response teams, this new item may help prevent unnecessary use of oxygen. The wristband also displays a website address to help professionals find out more about urgent and acute care support with cases of MND. The MND Alert Wristband will be sent out with our core guides for people with MND and can also be ordered separately. If you would like to order a wristband, contact our MND Connect helpline on 0808 802 6262, mndconnect@mndassociation.org

Success again at the BMA Awards

UR publication Caring and MND: support for you has just won top honours at the British Medical Association Awards, winning Patient Information Resource of the Year 2016. This is the second year running that the BMA has selected our work for the top award, which is a remarkable achievement and helps to raise awareness for MND. Our carer guide won against 211 entries

from other charities, Trusts and NHS departments, and following a rigorous judging process involving a panel of 31. The carer guide also won another award in the Self Care category. Catherine Macadam, immediate past BMA PLG Chair, reviewed the guide for the awards and said: “This resource is brilliant. I think it would be very empowering for carers. It speaks directly to carers’

The MND Association’s care information team receive their honour at the British Medical Awards

experiences. I think it could be used by anyone who is caring for someone with a life-limiting illness.” Our Easy read guide to motor neurone disease also came runner up in the Easy Read category and our suite of information sheets 9A to 9C on thinking and emotions was highly commended.

“This resource is brilliant. I think it would be very empowering for carers. It speaks directly to carers’ experiences. I think it could be used by anyone who is caring for someone with a life-limiting illness.” You can read more about this year’s BMA award entries at: www.bma.org.uk/ library/patient-information-awards/piawinners Our publications can be found at: www.mndassociation.org/publications To order printed copies of our resources, contact our MND Connect helpline: 0808 802 6262, mndconnect@ mndassociation.org Turn the page for more information about our guides and publications. www.mndassociation.org

care

In need of info We’re here to help T

RUSTWORTHY information is a vital part of our health and social care systems. It can help you get the support you need, which is one of our main aims with information provision at the MND Association. Information that helps you gain a better outcome for treatment or social care, can make a real difference. Sue Brackenbridge, a carer for someone with MND, said, “Using just one line quoted from your information sheet on NHS continuing healthcare in an email, meant we secured funding within four hours.” Health and social care services also have a responsibility to provide effective information. It is your right to ask for and receive appropriate information from these services. The NICE guideline on MND states: “People have the right to be involved in discussions and make informed decisions about their care.” This evidence based guideline for professionals makes it clear they should provide people with information about MND and support, at diagnosis or when they ask for it. Yet, even when provided, information is not always in a format or language to suit everyone’s needs. This can make it difficult to make informed choices about your care. As a result, a great deal of work is now being done across NHS and social care services to help people access information in a way that works for them. Since 31 July 2016, all organisations that provide NHS care or adult social care are now legally required to follow the Accessible Information Standard. If you are disabled in any way, have an impairment, or sensory loss such as sight or hearing, this standard means you should be given access to information you can easily read – or understand with support. The aim is to ensure you can

www.mndassociation.org

communicate effectively with health and social care services when you need their help. If needed, this means you can ask your NHS or social care provider for information in an alternative format, large print or a different language. You can also ask for an interpreter or translator to help you, if required. For best results, contact the service or professional in advance of your appointment to find out what’s available, and give them time to make any arrangements.

“Using just one line quoted from your information sheet on NHS continuing healthcare in an email, meant we secured funding within four hours.” While this standard does not necessarily apply to charities, we recognise its importance at the MND Association. We are working hard to make our own information more accessible and already have selected resources in a variety of formats, such as other languages, Braille, easy read, interactive PDF and large print. We have also introduced our first web app, for So what is MND, anyway? our new guide for young people affected by MND, and we hope to use this technique again. Our web pages about care are being redeveloped, too, which will improve navigation, searching and page content. Kaye Stevens, Care Information Manager says, “Recent work, on new formats and other languages, has achieved a great deal for families that previously found it hard to access our support. We are focusing on accessibility in 2017, to ensure our extensive provision reaches an even wider audience.”

As members of The Information Standard, governed by NHS England, our publications are all evidence based and user tested by people with MND and their carers. This is a different accreditation to the Accessible Information Standard, focusing on accuracy and relevance rather than accessibility. However, it does ensure that information is trustworthy and useable. We are also members of the Patient Information Forum (PIF) which champions accessible information and enables different organisations to share knowledge and expertise in information production.

rmation?

The latest on our care information

new Eating and drinking guide, which will feature recipes and information about maintaining your weight with MND. We also hope to release a new booklet on Making the most of life with MND later in the year, which will explore available support to help people with MND continue enjoying their interests, entertainment and social activity. In the meantime, we have revised or introduced the following resources and information sheets:

MND Alert Wristband: a new item adding to our alert resources to help people with MND if they need urgent or emergency care. See previous page. Living with motor neurone disease: an updated version of our most popular guide, providing a comprehensive overview about managing everyday life with MND. When someone close has MND: an updated version of our activity workbook for children aged four to 10, to help them work out ways to cope with the changes happening around them when someone close is diagnosed with MND. A small companion booklet is provided, to help a trusted adult use the workbook to communicate about MND.

The MND Association information is available in a range of formats

You can find out more at: www.mndassociation.org/publications for a list of all our publications and resources www.nice.org.uk/guidance/ng42 for the NICE guideline on MND www.england.nhs.uk/ourwork/accessibleinfo for details about the Accessible Information Standard www.england.nhs.uk/tis for details about The Information Standard www.pifonline.org.uk for details about the Patient Information Forum We also provide Information sheet 1B – How to get information in other languages and Braille If you would like to order publications, or need guidance about MND and available support, contact our MND Connect helpline: 0808 802 6262 mndconnect@mndassociation.org

4A – Communicating about MND to children and young people: to help adults find ways to open conversations with children and young people, about the changes that MND will bring. 6A – Physiotherapy: about how physiotherapy and exercise can help someone with MND. 10A – Benefits and entitlements: about available benefits and financial support, and how to claim where you are entitled. You can find our information online at: www.mndassociation.org/publications If you would like to order publications, or need guidance about MND and available support, contact our MND Connect helpline: 0808 802 6262 mndconnect@mndassociation.org

www.mndassociation.org

fundraising

Cyclists hit their fundraising goal in memory of Neil

LOVE of cycling and a desire to celebrate the life of the friend they lost to MND led two friends take to part in an epic 252-mile cycling challenge. Ian Adshead and Mark Bedford of Coventry decided to organise the event to raise money for the MND Association after their friend, Neil Scott died in 2015. Neil had two great passions in his life – cycling and Sunderland Football Club – so the duo decided to organise a cycle ride which would take them all the way from Neil’s home in Leamington Spa to the Stadium of Light – home of Sunderland Football Club.

Neil Scott

furthest any of us had ridden in a single event. Neil’s son Jonathan, who is not a regular cyclist, rode with us all the way – a tremendous feat.” With the support of Neil’s wife, Amanda, the event which took place from 28-30 May proved to be a huge success raising more than £8,000.

The cyclists arrive at The Stadium of Light in Sunderland at the end of their epic journey

Ian explained: “Mark and I were at a 60th birthday party and the idea of doing some sort of fundraising event for the MND Association came up. We mentioned it to some other people at the party and the idea grew. “We came up with the idea of cycling from Neil’s home in Leamington to Sunderland and then picked a weekend. “Most of the group had cycled before, last year I took part in a cycle ride in India for another charity, but this is the

www.mndassociation.org

“Mark and I were at a 60th birthday party and the idea of doing some sort of fundraising event for the MND Association came up.” A total of 21 cyclists and support crew made the journey north, stopping in Doncaster and Middlesbrough en route. On the final day, the team rode triumphantly to the Stadium of Light – to be greeted by Neil and Amanda’s families and friends, a moment they will never forget. Ian said: “We had a support crew and we stopped every few miles to have a drink and some cake. “We also stopped at Creepy Crawlies in York, a play area which Neil designed.

We sat on Neil’s remembrance bench and were treated tofree cakes and cream teas – we may have raised £8,000, but I think we put on 8,000 pounds in weight along the way! “Arriving at the Stadium of Light was a fantastic moment.” The £8,000 raised from the cycle, together with other generous donations received in Neil’s memory, have been added to The Neil Anthony Scott Tribute Fund which was set up by Amanda in May this year. Since then, the fund has contributed more than £15,000 towards the MND Association’s work. If you would like more information about setting up an MND Association Tribute Fund in memory of someone special, please visit www.mndassociation.org/ tributefunds. Alternatively, please call 01604 611864. If you would like help with your fundraising event contact our fundraising team on 01604 611860.

Dawn takes to the skies!

Bournemouth Daily Echo

N 85-year-old who sadly lost her husband to MND in January last year took to the skies above Bournemouth in August to wing-walk on behalf of the MND Association. Dawn Goodson, who raised over £1,700 by taking part in a zip wire challenge from Bournemouth Pier in 2014, flew on top of a Boeing Spearman Bi-plane as part of the Bournemouth Air Show.

without my shoulders being pulled from their sockets!” Dawn flew from Hurn Airport along the East Cliff while members of her family including her twin daughters Julie and Johanna, granddaughter Rhiannon, grandson Jeremy and his fiancé Liz stood proudly below dressed in MND Association shirts, carrying orange, white and blue balloons. Dawn said: “When I receive all the pledges I hope to have raised about £5,000. I really applaud those who do so many different fundraising events, especially sky diving.” When asked what challenge Dawn wanted to take part in next, Dawn said: “I have suggested an abseil down the Spinnaker Tower in Portsmouth – or should I wait until I’m 90?”

Dawn taking part in the zip wire challenge in 2014

She said: “Mike Dentith, the pilot, asked me on the ‘phone if an 85-year-old could climb on the upper of the plane without a ladder and agreed to let me do a practice flight which I did in April. “It was freezing and my chubby cheeks were blown behind my ears with winds of 120 mph – I couldn’t extend my arms

Dawn takes to the skies

Robert says ‘Thank you’ with charity show

MAN who is living with MND has helped to raise more than £1,200 by hosting a charity

show. Robert Hannah from Dudley, who was diagnosed with an aggressive form of the disease in January, decided to host the event with support from his wife Sue and their family and friends to raise money for the Association. He explained: “It has been a shock to us all, my quality of life is changing daily and I am coping the best I can. I have also received support and care from the MND Association. “I wanted to give something to say thank you for the help I have received so far and also to help others with MND. I asked my cousins, Karen and Joe if they could put a charity show on for us.”

The performers on the night took part free of charge and there was also a raffle and an auction.

“I wanted to give something to say thank you for the help I have received so far and also to help others with MND.” Robert said: “It was a fantastic night and everyone enjoyed the show. A special thank you to my wife for her continued love and support, also to Karen and Joe for helping me raise this amount. I would also like to thank all the artists, my family and friends and every one of you who helped. “It was a brilliant night that will stay with me forever. I am so proud of each and every one of you – I can’t thank you enough for making this night so special.”

George Mucklow and his friends pictured at the sale

Children raise £50 in charity sale

LITTLE boy whose father is living with MND set up a charity sale for the Association during his halfterm holiday. George Mucklow from Sutton Coldfield, was joined by a group of friends aged between five and nine to host the event in May. His proud mum Karen said: “They set up a stall, made a sign and sold some of their toys and made up games for people to play. They managed to raise around £50! “It was such a lovely thing for them to come up with on their own. They were all very clear they wanted to raise money for ‘George’s dad’s charity.’

Association staff go Gung ho!

TAFF from the MND Association raised £300 by taking part in Gungho! – a 5km run over large inflatable obstacles which was held in Milton Keynes. Proudly dressed in their MND Association vests and wigs, the intrepid team had to complete the course, which involved them going over, under and around the obstacles. The MND Association’s Conference and Events Administrator Chris Maden who was among those who took part said: “It was extremely good fun and a great way to raise money for the Association.”

The MND Association team is pictured at Gung ho!

www.mndassociation.org

news

Kayakers take on another epic challenge

EAM spirit helped spur a group of 40 fundraisers on during an epic kayak challenge held over the summer.

Justin said: “To be honest, this wasn’t the most physical challenge I have taken part in, but it was definitely the hardest psychologically. “Mentally, you just had to keep paddling for eight hours each day. It was constant.” Justin admitted that while some of the fundraisers struggled to keep going, team spirit won through. He said: “The walk helped to raise plenty of awareness, as we were all wearing MND Association T-shirts. The sun shone and we had fun.” Kayak4MND is the latest in a line of fundraising events Justin has taken part in on behalf of the MND Association since losing his best friend Gareth Hayes to MND in 2010.

His first major event, Walk4MND, saw him walk the 650-mile Welsh coastal path from Prestatyn to Porthcawl in just 30 days. In 2014, he cycled 800 miles from Land’s End to John O’Groats as part of Cycle4MND and last year he climbed the give highest peaks in the UK and Ireland in just three days with 50 other fundraisers. To date, he has raised over £77,000 for the MND Association – and he hasn’t finished yet. He said: “I am looking to organise an endurance walk, which will see me walking for 35 hours constantly. I also want to open it up to others who can do shorter distances – there are a plethora of options.” Follow @Kayak4MND on Twitter for the latest updates.

The Kayak4MND team take to the water

The team, led by Justin HostettlerDavies, took part in Kayak4MND which saw them cross Bala Lake in North Wales, Lake Windermere in Cumbria and Loch Awe in Argyll and Bute in Scotland before taking part in a marathon walk between Llandudno and Prestatyn. The challenge raised £17,500 for the MND Association and money is still coming in.

Those taking part also took part in a marathon walk from Llandudno to Prestatyn

A milestone event for Solent swimmers

ILESTONE after milestone was passed as 41 swimmers braved the waters of The Solent to take part in this year’s Swim the Solent event. The swimmers made the 100th crossing between Ryde on the Isle of Wight and the mainland on behalf of people living with

The swimmers take to The Solent for the Ian Pratt Challenge

www.mndassociation.org

MND and the MND Association since first being held in 2013 and celebrated raising more than £80,000 in total. Tony Bray who is a committee member of the Shropshire Branch of the Association and organises the event said: “The swimmers were each accompanied by a kayaker and we also had four safety boats in the water. “We had a lot of first timers and a group of swimmers from Portsmouth Grammar School. Every single swimmer who entered the water finished the challenge and it was a wonderful couple of days.” Tony, who first swam The Solent in 2013 with three friends, was inspired to organise the swim as an annual event after meeting Ian Pratt, who is living with MND, at the first crossing. The event became

known as the Ian Pratt Challenge in his honour from 2014. As a constant reminder of the reason behind the challenge, the swimmers wore more than 200 wristbands between them – each one in the name of an MND warrior – those who are currently living with the disease or MND angels – those who are sadly no longer with us. At the end of the swim, each wristband is sent on to the person living with MND, or their family, as a reminder that the swim was completed in their honour. Tony said: “The wristbands are organised by Sarah Lannie and there really is no greater motivation to complete the challenge than the wristband.” For more information visit www.swimmingthesolent4mnd.com.

Daring swimmer Ross conquers the River Severn

Ross pictured during his swim

T must count as one of the most daring endurance swimming events it is possible to take part in. But for Ross O’Sullivan swimming the length of England’s longest river – the River Severn – was just something he had to do to raise money for the MND Association in memory of his Uncle Jimmy who sadly died from MND. While he admits there were times when both he and his support crew came close to giving up, Ross, who is a civil engineer,overcame the mental struggle as well dangerous river currents to complete the 200-mile challenge, raising over £2,000 for the Association.

“I started training in December and was doing about 20 or 30km a week in the pool, but training is one thing and actually swimming it is another – it was quite scary.” The challenge started at the river’s source in Plynlimon, Wales but Ross walked for the first few kilometres as the water there is too shallow. The swim was then divided into shorter stages with Ross swimming on average 18.5km a day – around 11 miles. He said: “The only thing that kept me going was the sense of team spirit. We were wild camping by the side of the river

at night, and in all honesty, we nearly threw the towel in. “Around Gloucester it got really difficult. The river was polluted and the waters around Gloucester Weir were really dangerous. I don’t know whether I would swim there again, it was very dangerous and very silty.” The finish line was at Newnham near the Mouth of the Severn where the river flows into the Bristol Channel. He said: “The sense of achievement once I had finished was incredible, I was so relieved and pleased to have raised so much for the MND Association.”

“The sense of achievement once I had finished was incredible, I was so relieved and pleased to have raised so much for the MND Association.” And he is now setting his sights on his next challenge by pledging to swim the longest river in Ireland – the River Shannon – next year. He said: “I was in awe of the river’s beauty and as it’s not too far from where I live in Cardiff I decided I wanted to swim it. “I had done triathlons before and had decided I wanted to swim the English Channel before finding out you needed to raise £4,000 before you could do it. www.mndassociation.org

news Jean shares a snapshot of summer

O you have a hobby which you are still able to enjoy despite living with MND? If you do, Thumb Print would love to hear from you so we can share it with other members of our MND family. Jean Waters sent in this wonderful picture of a family of house martins which she took at her home.

Jean Waters

She explained: “I am fortunate to have slow progression but like everyone with MND, function deteriorates and interests and hobbies become memories. However, I keep trying to find things I can still do. “Living in the country in an old house with several outbuildings means swallows,

swifts and house martins all nest and I love watching and hearing them. “Looking up Google last year for some information about these amazing little birds I found that the British Ornithological Trust was conducting a nest survey of House Martins during 2016. “Despite being a regular sight in the UK, little is known about them. I signed up to take part as I could do everything online and the observations could be done from my wheelchair. “The net result was that I have spent many happy minutes watching them from when they fly back in spring, inspect old nests, build new ones, pair up and raise their families - all from my wheelchair and all from my garden. “I have always appreciated the ‘tilt in space’ function on my wheelchair but doing this study has taken it to a new level as I tilt right back to stare up at the eaves to find out what they are up to! “It is a challenge both holding even a small camera and pressing the button, so the odds were not on my side. However, the button pressing finally came down just as the parent was flying away having fed the chicks and I was thrilled to find this

Jean Waters’ picture of house martins nesting at her home

picture was the result! Within three days of taking the photo, the chicks fledged and being the last brood of summer means they will be gone within days. “The photo is my legacy of time well spent and a reminder that it is worth finding something you can do despite MND as it brings so much enjoyment.” If you have a hobby you would like to share, email editor@mndassociation.org or send details to the address on page 3.

Success for Sarah at volunteering awards

ARAH Ezekiel, who is living with MND, was named Volunteer of the Year at the Third Sector Awards in September. Sarah was diagnosed with MND in 2000 and has been involved with the Association ever since, initially joining the North West London Branch where she is secretary. Sarah has played an active role in campaigning for the Association and has supported on key awareness campaigns. She said: “I’m delighted to be the Third Sector Volunteer of the Year 2016. I’m very grateful to the MND Association for nominating me and recognising the work that I do. “My hope is that my award will encourage other people to volunteer for the Association, which is very rewarding. “People with MND need so much help and volunteers can make a real difference to their lives.” Chris Wade, the Association’s Director of Engagement said: “We couldn’t be more

www.mndassociation.org

proud of Sarah. “We always knew what an amazing volunteer Sarah is, but I am so delighted that she has been recognised now by the whole charity sector.”

Summer ball raises more than £3,000

SUMMER ball organised by Sarah Lewis from the South Lancashire Branch of the MND Association has raised £3,547. Sarah’s father died from MND when she was child and the event, held at St Helens Rugby ground, Langtree Park in July, was organised in his memory. A total of 160 people attended and Sarah is now planning another event next year to celebrate the branch’s 30th anniversary.

branches and groups

Shoppers get carried away Shoppers at an Asda store in Burgh Heath, Surrey helped to raise £435.62 for the MND Association. The East Surrey Branch organised the collection which was held in June. Branch Chairman, Simon Edmands said he was very grateful to everyone who supported the collection and added: “I would especially like to thank the dozen or so branch members who gave up their time throughout the day.”

Oil company donates thousands to Association A man from the Wirral, has helped to raise £3,000 for the MND Association through his employer. Steve Walmsley works for Essar Oil UK at their Stanlow refinery and encouraged the company to make a donation to the Wirral Branch of the MND Association. The refinery recently hit a safety milestone and the donation was made through the company’s Let’s Give initiative, which links safety with charitable giving. Steve said: “I nominated the Association as I still have good memories of the excellent help and support that was given to my father by the Wirral Branch up until his death in 2001.”

Branch hosts open house event An open house and gardens day at Smedmore House in Dorset raised £3,307 for the East Dorset and New Forest Branch of the MND Association. During the day, there was a chance to tour the house as well as finding out more about the work of the MND Association.

Mayor offers his support The Mayor of Market Rasen in Lincolnshire, John Matthews, has raised £3,327 for the MND Association during his year in office. Joined by his wife, the couple raised money with collection buckets at supermarkets, events and shows and encouraged schools to take part in the MND Association’s Silence Speaks event during Awareness Month in June. Mr and Mrs Matthews were inspired to support the MND Association’s work by their friend who is living with MND.

A date with royalty Members of the Mid Kent Branch of the MND Association were guests at the Queen’s 90th Birthday Celebrations which were held in Windsor courtesy of their local branch of Waitrose. The supermarket giant donated the tickets in recognition of the MND Association’s work on behalf of those living with MND. Association Visitor Sheila Thompson said: “The whole experience was thoroughly enjoyable – the venue with the stunning back drop of Windsor Castle and the atmosphere. “We were also excited to see the Duke of Wessex and Lady Louise Windsor. What a privilege to have been there, all thanks to the nomination from Waitrose.”

www.mndassociation.org

fundraising

and help us raise money

O you swoon over your Victoria Sponge or get excited about your perfect eclair – if so we want to hear from you! If you were inspired by the latest series of The Great British Bake Off, you could help raise vital funds for the MND Association by holding your very own bakeit! event, like a cake sale, coffee morning or afternoon tea.

Our supporters always rise to the challenge by creating all kinds of sweet treats and if you fancy having a go at organising your own event, we’re here to help. To register, or to find out more, visit www.mndassociation.org/bakeit. You’ll find lots of useful information as well as posters, invitations, food labels and a sweepstake kit and quiz. If you would like some help in branding your event, contact the MND Association’s fundraising team at fundraising@ mndassociation.org Melanie Smith, who works for the MND Association, regularly hosts bake sales to raise money for us. Here, she shares her favourite recipe for the ultimate teatime classic, Victoria Sponge.

Sponge 4 free-range eggs 8oz caster sugar 8oz self-raising flour er 2 tsp baking powd r tte bu d lte 8oz unsa om ro at d ne (softe temperature)

To serve 4oz Icing Sugar e 1 tsp Vanilla Essenc d at room ne fte (so r tte Bu z 2o temperature) Jam Seedless Raspberry

ins Prep time: 20-30 m inutes m 25 e: Cooking tim s ng rvi se 12 Makes:

or cake stand by pare a large plate Pre Method is ng in the centre, th 180C/350F/ placing a spot of ici d. Preheat the oven to un aro ing ov m m fro ll prevent the cake wi Gas 4. k cake en the oven to chec o 7-8 inch sandwich Grease and line tw After 25 minutes op ly nt ge em can press th tins. they are done. You e ctric ele an ld be springy to th th ou wi r sh ga ey su d to check – th Cream the butter an . touch. mixer until smooth ve to e bowl. m the oven and lea rat pa se a in gs eg If ready, remove fro ife kn Whisk the a n Ru r five minutes. and add to the butte cool in the tins for rn tu d an tin e Weigh out the flour th edge of ly with the eggs. around the inside and sugar alternate oling rack. co a to on s the cake er. wd po g kin ba e th Add tely cooled, place til light and fluffy. When they are comple un er ver th ge to ing to the stand and co Mix everyth the two one of the cakes on n th ee wi tw is be th ly p en To . ev raspberry jam Divide the mixture ing re of the oven. with a layer of nt ain ce e rem th e th in ce ce pla pla en cake tins and the butter icing, th prepare your en ov e th p. in to is on ke ca ke ca While the isking icing sugar butter icing by wh in e nc se Dust with a layer of es la nil va d an r tte the icing sugar, bu to finish. d fluffy. a bowl until light an

www.mndassociation.org ww

Tips and tricks for baking Cupcake flags Add a quick and personal touch to cupcakes with mini flags – print out a message or picture, wrap around a cocktail stick with a touch of craft glue. Ice cream all year-round! Pour your cake mix into ice cream cones and bake as normal – add a swirl of buttercream and your favourite toppings! Crumb coat When icing a cake all over, apply a crumb coat first to get a smooth finish. Using an offset spatula spread a thin layer of icing along the sides of the cake, pop in the fridge for 10-15 minutes before applying a further top coat. Fondant icing Use cornflower when rolling out fondant icing to make sure it doesn’t stick to the board. If covering a cake, roll the fondant over a rolling pin to keep it flat – and remove any flour residue with a damp fondant or soft pastry brush. Easy sprinkle shapes A quick and easy way to decorate a cake is to place any cookie cutter shape on top of the icing and fill with a thin but complete layer of rainbow sprinkles (or other edible decoration).

A story of love, laughter – and wonderful food

LL the sights, sounds and wonderful flavours of life in India can be found in a book which is helping to raise funds for the MND Association.

Anita Sharma-James and her mum pictured at a book signing

When her mother, Raksha Devi Sharma was diagnosed with MND in 2010, Anita Sharma-James decided to write a book about her mother’s life and love affair with food. Called A Life of Spice, Anita describes the book as ‘no ordinary cookery book,’ preferring to call it, ‘a warm tribute to her life.’ She said: “As well as losing much of her mobility, she slowly began to lose her ability to speak and had to write things down for the family. “Eventually, she lost her ability to swallow and was unable to eat many of the delicious Indian meals that she loved to cook so much. “Despite her life being hijacked by the condition, she remained so dignified and good humoured and continued to cook with the same pride and passion as she

always had for as long as she could. “My mum’s stoical attitude in the face of such incredible personal hardship gave me the inspiration to start writing this book. “The authentic family Indian recipes were all important at different stages of her life and are placed in their cultural and historical perspective. She sadly passed away in January 2012 but she carries on inspiring.” The book is available from Anita’s Indian Cookery School at www.anitasharmajames.com

Our vision could be your legacy We rely on voluntary donations of which legacies are a vital source, accounting for almost a third of our total income over the last decade. Without legacies, we could not maintain the same high level of investment in research or the breadth and quality of our care and support services.

So we are asking for your help, to ensure we can continue our fight against MND, by leaving a legacy to the MND Association in your Will. For more information and to request your Legacy Information Pack, please visit: www.mndassociation.org/legacies. Alternatively, call Stephen May on 01604 611865 or email legacies@mndassociation.org.

Please remember people with MND in your Will.

www.mndassociation.org

Registered Charity No. 294354

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

news

Thank you to all those who raise vital funds and awareness to support our work. Share your pictures at www.facebook.com/mndassociation

Reaching for the sky: Friends and family came along to support Nikki Machin who took on the challenge of a skydive. Nikki was fundraising on behalf of her sister-in-law, Jaine Drinkwater, pictured, who is living with MND, and raised a wonderful £1,400 for the local Exeter and East Devon branch.

Thank you: Helen Catmur, who is living with MND, did a Muddy Fun Run to raise money for her village primary school as well as the MND Association. She said: “I did the 10km race in an all-terrain wheelchair called a Boma 7.” She said it was great fun and she raised £3,344 for the MND Association’s Cambridgeshire branch, which has helped to support her.

www.mndassociation.org

Pedal power: When Anna Kulka signed up to undertake Etape du Tour 2016, the toughest stage of the Tour De France, she decided to use the opportunity to raise money for the MND Association. Working within the Neuroscience department at King’s College London, she’s only too aware of the effects of MND and the importance of funding vital research projects. Congratulations on completing the epic challenge and raising over £1,300.

Wedding bells: When Helen and Mark got married they were pleased to make a donation to the MND Association instead of giving their guests wedding favours. Helen was delighted her best friend Jacqui, who inspired the donation, was able to attend and see her two gorgeous daughters, Hannah-May and Giorgina, as flower girls.

A family affair: Sisters Stephanie Mills and Karen Dixon got their whole family involved in Manchester 10k in May, including Karen’s son Alex Dixon and Henry Vaughan, Stephanie’s great nephew who ran the Junior 10k. The family raised £1,300 for research in memory of Stephanie and Karen’s father Brian Unwin, who died from MND. Friends forever: Julie Lee took part in the South Hams Triathlon and raised more than £1,700 for the MND Association. She was inspired to take part by her dear friends, triplets Emma, Vanessa and Amanda, whose lives have all been touched by MND. In 2012, Emma tragically died and their mother Joan also died from MND in 2015. Amanda and Vanessa have also been diagnosed with the genetic strain of the disease. Julie was joined by her friends, Kate, Beth and Gail to take part in the event.

Party time: A street party organised by a group of friends and neighbours has raised more than £900 for the MND Association. The party was organised by the group who were inspired by one of their neighbours who is living with MND. One of those who helped to organise the day, Caroline Bowden, said: “The party was the source of an incredible amount of support and cheer to our neighbours. The family judged our cake competition and were clearly very moved.”

For my mum: Ian Milburn raised over £4,000 for the MND Association by cycling from Manchester to Blackpool in honour of his mum, Anne, who is living with MND. She was also there to congratulate him when he arrived at the finish line. He said: “My Mum is the most amazing and inspiring person I have ever known, she is so selfless and giving and has made our family what it is today.”

Plain sailing: Team Belle Marie battled through rough seas and winds gusting to gale force to complete the Round the Island Yacht Race on Saturday, 2 July in 11 hours 26 mins raising £1,400 for the West Sussex North Branch of the MND Association. On board the 35ft cruising yacht Belle Marie were skipper Andy Cox, his 13 year old daughter Annie Cox, Anne Marie Stewart and Mark Streeter. This was their sixth year taking part in the race but the first in Belle Marie.

www.mndassociation.org

your voice If you have something you would like to share with other members of our MND family, we would love to hear from you. Letters, which must include your full address, can be sent to Your Voice, Thumb Print, PO Box 246, Northampton, NN1 2PR or via email at editor@mndassociation.org Please note that letters may be edited. If your letter is printed we will send you an MND Association coin keyring.

A trip to remember

ERE are some snaps from a trip made possible from the Make a Wish Foundation when we took my son, Scott, to Hannahs in Devon, which is especially for those with disabilities. We did so much with him in that week - here is a picture of him at Brixham next to the Golden Hind and one when he got off the steam train to Dartmouth ready to cross on road ferry. Scott is only 17 and has a very rare MND/ALS/FUS mutation which is so aggressive and soul-destroying but we have travelled the length of this country with him and have taken him to so many lovely places which is not easy as he is completely paralysed. Keep up the good work and I hope one day there will be a cure for this terrible disease. Tina Ashford, via email

diary dates Regional Conference, Leeds 29 October

Talking Twitter How Twitter is keeping our MND family connected – follow us @mndassoc

Inca Trail to Machu Picchu 11–20 November

MND Association @mndassoc – 28 July, 2016 Congratulations to @SarahEzekiel who has been nominated for @ThirdSector Volunteer of the Year award

Santa Run, Victoria Park, London 4 December

Eyegazeartist @sarahezekiel – 28 July, 2016 @mndassoc @ThirdSector Wow, what a surprise! Who nominated me?

Regional Conference, Taunton 11 March 2017 Regional Conference, Liverpool 6 May 2017 Annual Conference and AGM 8 July 2017 Walk to D’Feet MND All year round

www.mndassociation.org

Eyegazeartist @saraezekiel – 28 July, 2016 @mndassoc @ThirdSector obviously the Association, thanks so much MND Association @mndassoc – 28 July, 2016 @sarahezekiel absolutely, you’re most welcome! Jean Waters @JeanWaters6 – 28 July, 2016 @mndassoc @sarahezekiel @ThirdSector well done Sarah. Hope you win! Eyegazeartist @sarahezekiel – 29 July, 2016 @JeanWaters9 @mndassoc @Third Sector Thanks! I’m chuffed to have been nominated, doesn’t matter if I win or lose. You can read more about this story on page 32

about us:

‘Making memories our family will never forget’

E would like to thank the MND Association for making our holiday away to Brick House Farm, Lancashire possible. Everything Samuel needed was there, the accommodation comes highly recommended, if you decide to go you won’t regret it. Samuel was diagnosed with Progressive Bulbar Palsy in 2012, and was told he had six months to live. The news shattered our hearts. We couldn’t imagine the future without Samuel, he

was and still is full of laughter and ignites a room. With a lot of love, tireless nights and commitment from family, friends and staff, Samuel continues to do well. He loves life and is planning his next break away. The picture above shows our family, from left to right, Ashley, Jamaen, Samuel, Dena and Natasha Cole. We love you Samuel, every day God gives us with you, we want to create memories, that will last. Samuel and Dena Cole, via email

The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments. We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. As a charity we rely on voluntary donations. Our vision is a world free from MND.

Website www.mndassociation.org

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

MND Connect

Trevor’s legacy will live on

Y husband, Trevor, was diagnosed with MND in May 2013, just a few days before we were due to go on holiday to celebrate our wedding anniversary. When we came back, the MND nurse and support team helped us every step of the way, and Trevor took part in clinical trials at Brighton University. Slowly, he lost the use of his right hand and arm, then the left, it was all such a struggle. He had pneumonia in January, went into hospital and then to St Barnabas Hospice. He came home, but was re-admitted to hospital and then the hospice and he died on 12 May. While taking part in the trials, he consented to donate his brain to the Neurodegenerative Department at King’s College in London. They were extremely grateful, as this will help towards research and maybe help find causes into MND and other disorders. We collected £500 for the MND Association at his funeral as a thank you for all the help we received. Sue Turnill, via email

Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 8026262

mndconnect@mndassociation.org

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

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

www.mndassociation.org

news

Our next generation of communication aids is here

POW

ERED

Book a free visit Bo Tr the right Grid Pad Try fo for you at home with on one of our specialists thinksmartbox.com/bookavisit thin

thinkSmartbox.com www.mndassociation.org