Winter 2015 - MND Association
Transcription
Winter 2015 - MND Association
The magazine of the Motor Neurone Disease Association Winter 2015 Star quality Film puts MND in the spotlight 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 family www.techcess.co.uk T 01476 512881 E [email protected] Totemic House | Springfield Business Park | Caunt Road | Grantham | Lincs. | NG31 7FZ 4 The Theory of Everything Film puts MND in the spotlight. 6 Marking Symposium success News from our global research conference. 8 Fighting back through fundraising Three inspirational individuals. 10 Improving wheelchair services Opening our third specialist centre. 12 Your stories Sharing experiences of MND. 18 Meet our champions Our General Election campaign. 22 A matter of choice Understanding ventilation. 29 Ice Bucket windfall Your views. Cover: Our Patron Prof Stephen Hawking with actor Eddie Redmayne at the London premiere of The Theory of Everything. 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: Paula McGrath, Editor, 01604 250505, [email protected] welcome… The arrival of 2015 marks my second anniversary as Chief Executive of the Association, a position I feel very privileged to hold. Without doubt there is one overwhelming highlight from the last 12 months – the Ice Bucket Challenge. The £7 million this social media frenzy raised towards our work is already making a difference. It is enabling us to drive progress even faster and further than we imagined when we developed our current strategy in 2013. We have already brought forward a number of research and care projects and this month our trustees will consider proposals for spending the windfall, informed by the 2,000 members who responded to our survey. See page 29. But it’s not just the $200 million US dollars raised around the world that really sticks in my mind, it’s the groundswell of support in the UK and across the globe coupled with something money can’t buy: hope. In December I travelled to Brussels for our annual International Research Symposium. The research presented in the formal presentations and poster sessions was impressive and showed encouraging progress in many areas (see pages 6 and 7). But networking and informal conversations were just as valuable, with researchers speaking enthusiastically about the impact the Ice Bucket Challenge has had on their work around the globe. I am immensely proud that we organise this world-renowned event. While I can’t promise another social media phenomenon, we will find new and creative ways of making a difference for people affected by MND. For example, the recently-released film The Theory of Everything, based on the diaries of Prof Stephen Hawking’s wife Jane, has again put MND in the spotlight with a global audience. Our dedicated volunteers pulled out all the stops to maximise this opportunity to raise awareness and funds at local cinemas. See page 5. It is important to remember the Ice Bucket Challenge was only one part of what you all achieved last year and I thank each and every one of you for the many ways you continue to support our work. Your commitment never ceases to amaze and inspire me. I know 2015 will be another successful year as we strive to move ever closer to our vision of a world free from MND. Thumb Print is available as a pdf at www.mndassociation.org/ membership The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply that those products or services will be provided, funded or available via the Association. Sally Light Chief Executive thumb print Winter 2015 03 feature Actress Felicity Jones, right, with Jane Wilde Box office hit puts spotlight on MND MND is once again in the global spotlight thanks to an Oscar and Bafta-nominated box office hit film which explores the relationship between our Patron, Professor Stephen Hawking, and his first wife Jane. The Theory of Everything, released on New Year’s Day, is a biographical romantic drama based on ‘Travelling to Infinity: My Life with Stephen’, written by Jane Wilde. It focuses on the challenges of being a carer and partner to someone with a progressive condition. The film’s star Eddie Redmayne is nominated for a multitude of awards and has already scooped a Golden Globe for his role as the renowned astrophysicist while Felicity Jones’ portrayal of Jane, has also been widely acclaimed. Our volunteers around the country made The Hawking family in the 1970s the most of an opportunity to use the film’s launch to raise funds and awareness. Prof Hawking was diagnosed with MND aged just 21 while studying at Cambridge. 04 thumb print Winter 2015 Now aged 73, he is recognised as one of the world’s greatest minds. Communications manager, Emma Johns, has been advising the film’s set designers and production teams since July 2013. She said: “We had a call from the set decorator who was working closely with the film designer and looking for contemporary care equipment or aids and specifically wheelchairs from the 1960s to 1980s. Using original family photos and thanks to specialist wheelchair services and engineers across the country, we were able to help. “It was clear very early on that the depiction of MND would be as accurate as possible on all levels. This is why it is such a fantastic tool for spreading awareness and such a powerful film too.” This attention to detail was something echoed by the actors’ approach too. Eddie and Felicity spent time with people living with MND and their carers thanks to the support of North London and North West London branches and Queen’s Square, Eddie Redmayne signs autographs at the premiere the National Hospital for Neurology and Neurosurgery. In an interview with the Guardian Eddie said: “A massive part of portraying Stephen was learning about MND. Finding humour and optimism in the most extreme of circumstances was certainly perspectivegiving.” Felicity explained the challenges of the role. “You are a husband and wife and what I found difficult was that it quickly becomes nurse and patient,” she said. “Constantly these people are trying to maintain their relationship and the affection they first had when they met each other, but quickly the boundaries become blurred.” feature Our volunteers enjoy the Leicester Square premiere They also met consultant neurologist Dr Katie Sidle, MND clinical nurse specialist Jan Clarke and other staff including a speech and language therapist. Jan said: “The film is great and the actors really did their homework. It’s amazing how Eddie managed to portray the disease. With the permission of patients he attended the clinic every week for five months and Felicity also came along to some sessions. “Eddie is such an understanding and sensitive young man and he really fitted in at the clinic. Patients were happy to talk to him and show them how MND was impacting on them. Most people like to tell their story. “We know a lot of problems stem from the fact that so few people have heard of MND, so we are all delighted that this film is raising the profile. Eddie has spoken about people with MND in all of his media interviews.” We were given the opportunity to invite volunteers and guests to the film’s premiere in December at Odeon Leicester Square ahead of the general release. Prof Ammar Al Chalabi, Director of the King’s MND Care and Research Centre, was among those who attended. He said treatment and diagnosis are very different today from that depicted in the film. “The acting was superb. If Eddie Redmayne had come to my clinic like that I would have thought ‘this is MND’. “His posture, body movement, limb movement, neck weakness, speech, swallowing, all were exactly what one would expect neurologically. Even the exaggerated reflexes looked correct, which can be a very difficult thing to mimic convincingly.” The film is great and the actors really did their homework. It’s amazing how Eddie managed to portray the disease. After meeting Eddie at Queen’s, Glenn Phillips, one of our members who has MND, agreed to the actor visiting his Bushey home. He said: “Eddie was so thorough and scrutinised everything I did in detail. “It was riveting to see his performance, and to see some of the scenes we’d discussed on the big screen was fascinating, albeit tinged with melancholy. It captured a moment in my life that haunts me and always will. I wouldn’t hesitate to do it all again. “As a film graduate and a teacher for many years I was intrigued to see part of the film-making process de-mystified in this way and to be part of this was very important and exciting for me.” With Association Ambassador Benedict Cumberbatch also Oscar and Baftanominated it’s an exciting time! Keep up with our latest celebrity news on Twitter @mndvipteam Bucket collections Our Northampton Branch collect at Cineworld Thank you to our branches and groups who joined forces with local cinemas to organise awareness stands and bucket collections across England, Wales, Northern Ireland and the Channel Islands. The UK’s second biggest cinema chain, Cineworld, agreed that we could collect in the foyers of their cinemas. A fantastic total of 75 collections took place with many other cinema chains involved including Picturehouse, Odeon, Vue, Movie House Cinemas and Empire. Chris Wade, our Director of Engagement, said: “It was a great opportunity for our members to share awareness of MND, and it all came about thanks to our volunteers on the Isle of Wight and in Shropshire.” Thanks to the ongoing support and generosity of cinema advertising contractor Pearl and Dean, our 60-second advert featuring TV presenter Nick Knowles and Eric Rivers, who has MND, was also broadcast at some screenings of The Theory of Everything. Felicity’s portrayal ‘couldn’t be bettered’ When the film’s production team was looking for people who had experience of being a wife and carer to speak to actress Felicity Jones, Brigid Philip’s name was put forward by Caroline Macdonald from our North London Branch. Brigid was married to Michael Kelly who had MND and died in 2011. She is the branch’s newsletter editor. She agreed to meet with Felicity who visited her at home. She said: “I thought it was worthwhile doing because people need to understand how people with MND need help from every direction in ways that you can’t even imagine. “People have no idea what it is like to care for someone with MND and those of us that do – well we can make a huge difference. “We talked about what it is like to be a wife in that situation and how it must have been desperate for Jane at that stage in their relationship and with young children to look after too. We looked at some specific details such as how I coped when Michael had a choking incident. “Like Stephen, my husband was a mathematician, and he focused on solutions. There were no dramas; we got on with it on an even keel and it was just business as usual, as much as possible. I imagine that was what it was like for the Hawkings too. “Felicity seemed to Brigid and Michael me to get the nub of the matter really well, and responded to the script just as I would have hoped. I thought that she did very well - couldn’t be bettered.” thumb print Winter 2015 05 research Marking the success of our 25th Symposium Around 900 researchers attended our 25th International Symposium on ALS/MND held in Brussels, Belgium. The Ice Bucket Challenge and the awareness it raised of MND, both with the public and worldwide research community, was evident in the buzz around the event, from 5-7 December. Association-funded researchers chose our International Symposium to reveal they are a step closer to creating a diagnostic test for MND, thanks to the participation of people with the disease. There is currently no diagnostic test for MND. This means that other diseases have to be excluded first before a clinical diagnosis can be made by a neurologist – which can sometimes take several months. An effective ‘biomarker’ for MND would change this. A biomarker is like a biological ‘fingerprint’. It could be something specific in the blood that could potentially be used to develop a diagnostic test for MND, or to monitor disease progression. Association-funded researchers Dr Martin Turner, University of Oxford, and Dr Andrea Malaspina, Queen Mary’s 06 thumb print Winter 2015 University of London, presented results of their joint biomarkers research at the symposium. They have found a potential trait for MND that can be detected in a blood sample. Importantly the researchers have found that this biomarker increases with disease progression, making it an ideal marker for monitoring future clinical trials. Dr Turner said: “Neurofilaments are the building blocks of each and every nerve and are thought to accumulate in the spinal fluid (crossing over into the blood too) as nerves degenerate across a range of conditions. We have found them to be raised in people living with MND. “Even though this finding in itself is not unique to MND, importantly the level seems to reflect an individual’s speed of disease progression. What my group has been able to show is that this level can be directly linked to the damage we see in the motor tracts using the MRI scanner. It confirms that neurofilaments are objectively linked to the disease process in MND, and is a strong candidate for a workable biomarker that we might even be able to measure using only a blood test.” Dr Malaspina said that without the participation of people living with MND, this research would not have been possible. He explained: “The enthusiastic participation of patients in our ALS biomarkers study has been a real catalyst for our research. I’m humbled by the degree of insight patients have shown in understanding the nature and potential impact of our research.” research From the Symposium to your sofa Sally Light Brian Dickie Kevin Talbot Ammar Al-Chalabi Barney Bryson Sally Light, our Chief Executive: “It was great to hear all of the science and to hear people connecting with colleagues from around the world and making links with their various pieces of work. But what it’s fundamentally about is finding a cure for ALS/MND and that is the thing we must always keep in the forefront of our minds. The last speaker really summed it up for me when he said ‘it’s great that this is the 25th Symposium but we must make absolutely sure that there is never a 50th.’ ” Brian Dickie, our Director of Research: “We have been looking for biomarkers of this disease for a long, long time and work coming out now that suggests we are starting to get there is really exciting. It was a collaboration from two of our research labs, in London and Oxford. They are sharing their samples and sharing their expertise and beginning to deliver. “The researchers both said we could not do this without the patients’ participation, it’s absolutely essential.” We brought the latest research news back from our Symposium almost instantly through digital and social media. In 2014 our blogs and Twitter feeds reached 4.4 million people around the globe – up from 324,953 in 2013, so that’s 13.5 times more. There were: • 2,902 tweets, with 161 from @mndresearch • 341 Twitter accounts tweeted with the hashtag (#alssymp) • More than 10 live blog reports. Prof Kevin Talbot, Director of the Oxford MND Care and Research Centre: “One of the striking things from this year’s Symposium is the number of different therapies that are emerging… We are heading in a direction where we are going to have therapies coming in to the clinic that have much more chance of working.” Prof Ammar Al-Chalabi, Director of the King’s MND Care and Research Centre: “For me the highlight of the year, and the conference, has been project MinE, a massive multinational group of researchers all working together to find genetic causes of MND. For me the only way forward is for us all to work together.” Barney Bryson, Researcher at the Institute of Neurology, at University College London: “I’ve found my first Symposium to be extremely rewarding. It’s an invaluable opportunity to meet other researchers in the same field and to get an idea of the very latest research. We also had the opportunity to meet with clinicians and care givers, which is very important to explore the entire breadth of the field.” Poster presentations attract large crowds A biomedical or clinical poster is similar to an advertising poster, with researchers presenting and discussing their work. This year’s poster sessions showcased over 300 different topics with large crowds often surrounding just one poster and its presenter! Our Lady Edith Wolfson Clinical Research Fellow, Dr Jakub Scaber, University of Oxford, said: “I didn’t expect such an interest in my work, I ended up being in discussions for well over half an hour – I didn’t even get chance to remove my coat! I really enjoyed the conference.” The increasing quality of work presented during the two sessions made it the highlight of the symposium for many. Early career researchers were also judged on their poster presentations, with two researchers winning the scientific and clinical poster prizes respectively. Dr Jakub Scaber at a poster session Samantha Price, right, from our research team tweets with MND Association funded researcher Matt Gabel @euancrobertson: Heading home from #alssymp loads of things to follow up and digest but very worthwhile few days!!! @NeuralOoi: Best quote of #alssymp by John Hardy on motor neuron vulnerability in #mnd: neurons exist at different distances from the cliff of failure @mndaustralia: Fabulous quote to end the scientific highlights session ‘hope is in the science’ #alssymp @MeisnerNc: closing session of the #alssymp- w.robberecht: ‘you know why its so nice to be in ALS research? because we all want the same thing’ @DrNikSharma: #alssymp. Well done to @DrBrianDickie & the @mndresearch @mndassoc team for organising such a great conference. See you all in Orlando! @ALSTFI: Dr Turner and Dr Malaspina’s research is really important work! getting CSF is harder than plasma, so finding a plasma/ blood based correlated biomarker AWESOME It’s not too late to catch up Visit www.mndresearch.wordpress.com or contact the Research Development team on 01604 611880 to request paper copies. thumb print Winter 2015 07 fundraising Fighting back through We are incredibly grateful to all those who support our work, including the many people living with MND who despite facing daily challenges fight back against the disease through fundraising. Here we feature just three inspirational individuals… fundraising Glass half full “I’m lucky enough to have a slow progressing form of MND – lots of others are not as fortunate. For me that means I really should be doing as much as possible to raise awareness and funds while I still can.” Since David Setters, 57, from Redhill in Surrey was diagnosed in 2012 his family and friends have raised more than £25,000 for his planned Fightback Fund to support our work. “I’ve called my fund ‘Sod this for a game of soldiers – let’s fight MND’. Let’s go for a run, a walk, a bike ride a cake bake or whatever for the MND Association,” he said. “That view might be different if my MND were more advanced and aggressive, if I were younger and had young children, or simply because I was a ‘glass half empty’ rather than a ‘glass half full person’.” Last year David’s twin sons Andrew and Robert took part in the Brighton Marathon. His other son Mark completed five events in the Back to the Trenches series, long-distance adventures through David and his supporters 08 thumb print Winter 2015 David, right, in the Nutfield Village Road Race mud, water and over extreme obstacles. David’s local Nutfield Village Road Race event further boosted the coffers and regulars at the village pub have also shown their support, including when David’s whole family took part in the Ice Bucket Challenge in the pub garden. Inspired by Mark Maddox’s Football v MND awareness campaign, in October the family organised a tournament at Reigatians AFC and raised £4,650 for the East Surrey Branch. David said: “I made my first appearance in 1971 for the then ‘minors’ team and my three sons are now playing in the beloved green shirt. We had a terrific day with both the older and younger elements of the club taking part.” David is a trustee of the Futures for Kids Trust which made a generous grant to support our information for young people. David’s friends Andy Cook and Howard Fine will cycle 2,710km from The Wirral to Mojacar in Spain in April with David, his wife Helen and Howard’s wife Sandra travelling in the support team. Find out more at http://cycletospain.wordpress.com fundraising Positive mental attitude Jody Kerley’s positive mental attitude was an inspiration to all who met him. With the support of his family, friends and the local community, the 37-year-old from Chatham, Kent, raised over £40,000 for the Mid-Kent Branch during his fouryear battle with MND. This even included a pledged £10,000 donation from the band Coldplay’s frontman Chris Martin! A lifelong fan, Jody met the band in July after a concert at the Royal Albert Hall. Chris sat and talked with Jody, who also had spina bifida, before inviting him to their gig the following evening where he dedicated the song, Fix You, to him. Jody’s friends and family arranged a family fun day centred around his local pub, the Victoria Cross in Lordswood, and raised over £5,500. He then upped his fundraising target to £25,000. He organised a number of successful Jody at his Disney-themed Walk to d’feet* fundraising events including an Ice Bucket Challenge and a wonderful Walk to d’feet* MND in Disney costumes. Sadly Jody lost his battle with MND in October. His sister Alicia Duff said: “It has been a very tough time for us all, but knowing Jody is no longer suffering is some consolation to us. “We are going to continue to raise money for the MND Association as we know this is what Jody would have wanted.” Channelling energy into raising funds A super-fit sportsman all his life, Kim Manns competed at a high level in football and cricket. But since a diagnosis of MND two years ago, he has been channelling his energy in a different direction – raising funds to support our work. The 61-year-old from Portsmouth recently organised his second successful golf charity tournament at Waterlooville Golf Club. Kim said: “Many people that could not get in last year’s Kim Manns has organised two golf days event heard what a fantastic The Captain and Lady Captain also made day it was and kept on at me to do the Association their club’s annual charity it again. and raised a further £4,500. “I arranged it all myself this time so Kim said: “It just shows how wonderful it was on a smaller scale – a golf day, and supportive my friends – including exevening raffle and entertainment. A Portsmouth FC players and an ex-England great day was had and the evening International footballer – and the golf entertainment was superb. In total we club have been since my diagnosis.” raised around £2,700.” Kim organised a skydive over Salisbury Last year’s charity golf day made £5,700. Plain in September for team ‘MND… We’re going to get you’ and raised around £18,000. He said: “My friend’s son had done a skydive and his dad told me how much he loved it and how he would jump at the chance to do it again. “That got me thinking that could I get a couple of mates and my sons to do it for the Association. Well, that soon turned into a group of 30 people including my wife Stephne, my two sons Chris and Sam, and nieces Gabby and Ellie. “A great day was had by all. In fact about a dozen people are going to do it again next year.” Kim puts his fundraising success down to the support of those around him. “Does anyone in the world have a better group of loving, caring, supportive family and friends – I don’t think so,” he said. “When I stop and reflect they make me feel so humble and blessed.” *Walk to d’feet is a Trademark of The ALS Association and is used with permission. All rights reserved. thumb print Winter 2015 09 care Improving wheelchair services Kevin North from Invacare talks to Simon Adams about the Spectra XTR and how it could meet his needs We are improving wheelchair provision for people with MND and recently launched our third specialist wheelchair service. Health professionals, people affected by MND and charity representatives gathered for the launch at the Queen Elizabeth’s Foundation for Disabled People’s (QEF) Mobility Services Centre at Carshalton, Surrey. Our wheelchair service is funded from a three-year grant from the Department of Health. This also funds wheelchair therapist Jenny Rolfe at our MND Care and Research Centre in Oxford, and Christine Orr at Seacroft Hospital, Leeds. Sally Light, our Chief Executive, told the 80 guests at The Future Is Here launch event in November: “The MND wheelchair service at QEF is a partnership we are 10 thumb print Winter 2015 extremely proud of.” Jonathan Powell, Chief Executive of QEF, said the charity was thrilled to be part of the exciting partnership. He explained: “We have an affinity with the MND Association in that we believe disabled people should have the same opportunities as everyone else to achieve their goals in life.” “Our prescription meets the needs of 80% of people with MND that need a wheelchair, which is a great help to professionals.” Our new wheelchair service at QEF is delivered by Occupational Therapists Fiona Eldridge and Paul Graham, managed by Sarah Vines. Fiona said: “We are trying to see people with MND very early while they are still mobile. It’s so much easier if we are not dealing with a crisis situation. “Being based at the QEF Mobility Service Centre gives people with MND the opportunity to benefit from the other services it offers. For example people can look at wheelchairs and wheelchair assisted vehicles (WAVs) at the same time.” Referrals to our wheelchair services are made by Association staff and volunteers, our MND Care Centres and Networks and NHS wheelchair services. Individuals may also self refer. New powered neuro wheelchairs The government grant has also funded our work to develop four new powered neuro wheelchairs in an innovative partnership care with leading wheelchair manufacturers Invacare, Ottobock and Sunrise Medical. The electrically powered indoor/ outdoor wheelchairs (EPIOC) are designed to meet the changing needs of people with MND. They bring together elements from a variety of standard products to create a new wheelchair prescription which is available to NHS providers. Speech and environmental controls can easily be added. The prescription will help therapists prescribe the right chair for the estimated 300 people with MND who need a powered wheelchair in any one year, while reducing delivery times and costs. Karen Pearce, our Director of Care (South) said: “Our prescription meets the needs of 80% of people with MND who need a wheelchair, which is a great help to professionals. It has a number of bolt-on From left: Paul Graham, Sarah Vines and Fiona Eldridge at QEF features which means one wheelchair adapts to people’s needs over time. “It also means a wheelchair is swiftly available ‘off the peg’ and this is knocking weeks and weeks off previous provision. In the past people have had huge waits for a wheelchair – in some cases up to 18 months – and at times the wrong chair has then been provided. “Cost-wise it’s attractive to wheelchair commissioners too. We are delighted that 116 neuro powered wheelchairs have been purchased by wheelchair services in the six months since they have been available.” Influencing wheelchair services Our work to influence wheelchair provision has seen us meet with wheelchair services across the country and listen to therapists and people with MND. We have also presented at a number of important conferences. This has helped us to identify where we should focus our attention to make the biggest difference for people affected by MND. “We want people with MND to have an improved service and get the right chair at the right time,” explained Karen. “It is absolutely not our role to replace statutory provision, but we are working with the Department of Health and NHS England to make sure commissioners are aware of the needs of people with MND.” We recently attended the high-profile NHS Improving Quality My Voice, My Wheelchair, My Life summit. This aims to transform NHS wheelchair services so that users with complex and changing needs can get the right wheelchair for their needs in a timely way, and appropriate and continuing support. Warm welcome and personal approach Margaret Cox from Camberley, Surrey, and her husband David, are supported by our wheelchair therapist Fiona Eldridge at QEF Carshalton. David is set to receive one of the new powered neuro wheelchairs and the couple also plans to lease a WAV. “We received a really warm welcome from Fiona and the personal approach offered has been a breath of fresh air,” said Margaret. “Visiting the service really opened our eyes to what is available – we had no idea there was such a variety of chairs or vehicles. “It’s a blessing to come to the Association’s wheelchair service at QEF, it’s hugely beneficial to us.” Accessing a wheelchair It is estimated that 80% of people with MND will need a wheelchair. It is important that an appropriate posture and mobility assessment is carried out as early as possible, to determine what type of wheelchair or mobility equipment an individual may be entitled to on the NHS. England Assessments are offered by the NHS through the 150 wheelchair services in England (also called Disablement Service, Enablement Centre etc). There are local eligibility criteria and referral processes, however in general anyone with reduced or impaired mobility should be able to be referred to their local NHS service by their GP or Health or Social Care Professional. Northern Ireland Assessments are offered by the NHS through the Department of Health, Social Services and Public Safety (DHSSPS) Wheelchair Service. The service is provided by the Regional Disablement Centre at Musgrave Park and local assessment centres within the health care trusts in Londonderry, Enniskillen, Armagh, Newry and Antrim. Referrals are made by a hospital, GP, consultant or occupational therapist. Wales Wheelchair services are provided by the Welsh Posture and Mobility Service which is delivered by the Artificial Limb and Appliance Service (South Wales), and the Posture and Mobility Service (North Wales). These are supported by specialist Rehabilitation Engineering Units (REU) at Bryn y Neuadd, Cardiff, and Swansea. Referrals should be made by a qualified healthcare professional. Further information: For more information or advice on wheelchair services email wheelchairqueries@ mndassociation.org Margaret and David Cox To view our powered neurochair information film visit www. mndassociation.org/wheelchairs thumb print Winter 2015 11 your stories How MND has affected your lives Losing my voice Trevor Burlingham, from Thetford was a professional photographer and keen public speaker before a diagnosis of MND. The zorbing team Great balls of fundraising Andy Gray, from Middlesbrough, and his friends had a ball of a time on a fundraising walk with a difference. In 2013 I convinced my friends to take on the 24-hour UK Three Peaks Challenge, it was fantastic. Driving home with the adrenaline pumping we knew next year had to be bigger and better. I was with my dad, who has MND, and brother at a Newcastle match and at half time two giant inflatable zorb balls were rolled on to the pitch. I turned to my dad and said, ‘That’s our next challenge’. The team didn’t take much convincing. Many thought it was crazy and impossible but I told them surviving MND is impossible, this would just be hard work. We wanted to complete a coast-tocoast zorbathon, but logistics wouldn’t allow it. Northumberland County Council was fantastic and the 60-mile Five Castles Zorbathon came about. We travelled from Warkworth Castle to Alnwick (no one has had so much fun in there since Harry Potter learned to fly his 12 thumb print Winter 2015 broom) on to Chillingham then Bamburgh and Dunstanburgh over three days in a zorb ball. On day three it was great to be joined by Colin Hardy from MND Northumberland, his support was invaluable and around 35-40 of our family and friends walked the last four-and-a half-miles with us, MND buckets in hand. Alnmouth had a beer festival. Bus drivers stopped to donate, women threw money at us from taxis and people came out of pubs to get a glimpse at the crazy gang. What made this last leg so special was that my dad joined us. We took shifts pushing him until we finally reached Warkworth Castle where it all began. We raised almost £4,000 for MND and received £2,000 in donations of equipment etc. We also hope we helped raise more awareness. I had a long career working as a professional photographer, retiring in 2013. I was also a public speaker, speaking on many subjects loosely related to photography. I would be booked for as many as 60 talks per year. Trevor Burlingham I found my voice was getting rather slurred, in fact when I had just one glass of wine I would sound positively drunk. It was also getting a problem to swallow. I went to see my GP and after several tests I was diagnosed with bulbar progressive MND. In the following six months I have almost lost my voice, I cannot even answer the phone and have to use an iPad for communication, even with my wife Annette. I have great trouble drinking and can only eat soft foods. I am having a PEG fitted. My hands are weak, I cannot do shirt buttons up or do any fine work. My ankles feel like lead when I walk, which is not far these days. The result is I had to cancel all the talk bookings I had this year, I had hoped to continue with my public speaking for the foreseeable future. I cannot easily lift or operate a camera these days. On the positive side I can still drive, I have a Blue Badge which is a great help and I still have some mobility. The support I am receiving from the medical profession in my area is excellent, and my wife and I attended a four-week Positive Living Course at St Nicholas Hospice, Bury St Edmunds. The support we are receiving from the Association is unbelievable. I do not know what we would do without you. your stories How MND has affected your lives Caring takes its toll on emotions Former carer Jennifer Chambers describes how a Thumb Print story has brought her some comfort after the loss of her husband Tony. In September 2014 my husband was diagnosed with MND. Just 22 days later he died. He was 64. Three years before he had to give up his job as a bus driver after suddenly developing double vision. This was put down to a mild stroke as he had weakness down his right side. His weakness worsened and his walking was getting very poor. In November 2013 a CT scan revealed a giant brain aneurysm. The doctors believed this had been causing the problems and he should improve. But Tony’s condition deteriorated. Our GP referred him back to the neurologist. He agreed something more was wrong and Tony was admitted for tests. We received the devastating news it was MND. Just 22 days later I lost the love of my life. He had pneumonia and his body could not fight it. While planning the funeral with the celebrant, the postman delivered the welcome pack from the MND Association. I couldn’t open the envelope for a couple of weeks. When I finally did, I flicked through Thumb Print and saw all the courageous and inspiring articles with a growing feeling of hopelessness. All those lovely people and their loved ones dealing with their illness with such courage. Then I came across the story from Pam McQuillan. She had written so honestly about how she had cared for her husband through MND. She had put into words the exact feelings I have. It feels like I spent the last two years nagging Tony to try harder and moaning that I never had any time to do anything for myself etc. I feel so guilty that I couldn’t have been kinder. I told him every day how much I loved him and I know he loved me very much but it doesn’t stop the guilt. Pam’s story has helped me realise maybe I am not such a bad person and 24-hour caring has a huge impact on your emotions and patience. Thank you Pam. I am glad we only had three weeks to know Tony’s condition was terminal. All Tony and Jennifer Chambers renewing their wedding vows the time we didn’t know he had MND there was hope. He believed his life would get better and we would grow old together. My days now are very long and lonely and I miss Tony every second. He suffered so much, with such patience. I was so lucky to be married to such a special man. I wish MND sufferers and their families courage and hope that a treatment will be found to end this terrible disease. Dad’s positivity continues to inspire Inspired by memories of her dad, Nicola Williams, from Rhydymwyn in North Wales, and her family are fundraising to support our work. Since losing our dad Russ in 2012 at only 58 years old, my family has held many fundraising events including a table top sale, coffee morning and auction night. Russ Williams In 2014 my sisters Sally and Cathy and I did the Great North Run and raised nearly £2,200 for the Association. My dad is an inspiration to us all as he dealt with his illness so positively and we never heard him grumble. Our mum Jen cared for Dad for three- and-a-half years and catered for all his needs. They had been together since high school and we were all so pleased they got to celebrate their 40th wedding anniversary. Our brother Steven Jones and his wife Beth are also very supportive. My dad was a great granddad, always making time to have fun with the grandchildren – eight in all – so he was always kept busy. My son was born on New Year’s Eve in 2011 and sadly we lost Dad eight days later – he got to see Arthur once. I named my son Arthur Russell. We all miss him so much and life has never been the same since. Please keep up the good work and let’s hope for a cure one day. Pictured, from left: Cliff Wiseman, Sally Wiseman, Cathy Beckett, Nicola Williams and Stephen Beckett your stories: Please send your stories and photos to [email protected] or Editor, MND Association, PO Box 246, Northampton, NN1 2PR thumb print Winter 2015 13 your stories How MND has affected your lives Cut out to be an artist Garry Holt, 38, from Oldham, has found a creative way to manage his darker days. Garry Holt with his art I was diagnosed with Kennedy’s disease* in 2004 aged 29. In 2013 I felt well enough to go into hospital for a routine operation, but complications occurred and afterwards it seemed I had forgotten how to walk. My balance had completely gone. I didn’t know where to put my feet and my legs and arms were going into spasms. I was referred to the Floyd Unit at Birch Hill Hospital in Rochdale where I was an in-patient for six months to help me back on my feet. It was a dark time for me and I slipped into deep depression, but near the end of my stay I was shown art therapy. I was very reluctant as I’m rubbish at art and the first session was awful, but the lady explained the following week we would do collage work. Well, that day something just clicked. The lady said I had a natural talent. On leaving she told me to keep doing the work. So I did and when I have dark days now I make pictures. I set up a Facebook page called Room 8 Gallery and straight away I received 500 likes. I was gobsmacked. Somebody forwarded my work on, and I have been chosen ahead of hundreds of other artists to hold my own art exhibition in Touchstones Gallery, Rochdale. It’s been a rollercoaster year, with a somewhat happy ending. My exhibition will be from 6 June to 29 August. It would be great to see some of you there, as I’m having an opening day. If not please have a look at my work, Room 8 Gallery on Facebook, and give me a ‘like’, it would be really appreciated * Kennedy’s disease is a disorder of the motor neurones which is caused by genetic mutation. The MND Association supports people with Kennedy’s disease. My incredible family Alec Jenkins says words cannot describe how proud he is of his brother Paul, nephew Ross and sister-in-law Lin, for raising funds and awareness of MND. In 2013 Paul and Ross (known as Jenko and The Bear) walked the Ridgeway National Trail, an impressive 87 gruelling miles. Last year they walked the Kennet and Avon tow path, a distance of 85 miles. The route included a very high aquaduct. Neither of them likes heights! I managed to get the delightful Ellis Barker, a reporter with the Newbury Weekly News, to publicise the walk. When they passed through Newbury I met up with them, Lin and her friend Sheila, and the newspaper sent a photographer. They have also completed other walks and runs, including three Reading halfmarathons for the Association, plus other events in aid of other charities. Lin provides support for the walks and also organises and/or participates in various money-making and awareness raising schemes, eg car boot sales, fetes – 14 thumb print Winter 2015 anything that will make money (providing it’s not illegal or immoral!). She is assisted by Sheila, whom she met at the Olympics where they were volunteer Games Makers. She volunteered to clear up after the Reading music festival. Those involved are allowed to keep anything they can sell. She collected folding chairs, tents, duvets, sleeping bags, wellies, etc, much of which has been sold and added to the fund. When not doing anything else she knits dolls to sell. Everything they collect or realise from sales goes into the fund, all costs and expenses are paid out of their own pockets. It is unlikely that a cure will be found in time for those of us with MND at the moment, but it is still essential to fund research for the benefit of those in the future. My family’s latest efforts were to raise Back, from left: Lin, Jenks, Chris, Jan, Margaret, Jane and front: Alec funds to buy a cough-assist machine. I’m hoping it will be a long time until I need it. In the meantime it will be at Royal Berkshire Hospital for the benefit of others. Margaret, Jane and Jan, the Chair, Publicity Officer and an Association Visitor of the local branch went to the hospital to present three cough-assist machines purchased by the branch. Jenko and Lin presented the machine they had bought. Several local papers/ radio stations reported the event and Ellis from Newbury Weekly News gave my family the recognition they deserve. your stories How MND has affected your lives Caption Chris Pennington and Ciaran Ball Our Oompa Loompa adventure Chris Pennington and his brother-in-law Ciaran Ball set off for a fundraising adventure in Cumbria – dressed as Oompa Loompas. Chris shares their story. When my dad was diagnosed with MND, Ciaran and I decided to come up with a fundraising idea. The fact we had never heard of MND nor knew anything about it was scary. As he was a great lover of the Lake District, we decided to do a hike there; to fundraise and spread valuable awareness. In 2010, we set out to hike 50 miles, over five days covering a handful of mountains. The mountain range was littered with thick snow! We still walked 50 miles and climbed one of the mountains and raised £3,500, which was brilliant. I’m in the RAF and Ciaran lives on the Isle of Man, but in 2013 we were together again and went to the Lake District. We realised we needed to sort out another trek. I deployed out to the Falklands and took maps of the Lake District. I taped them on my bedroom wall and started to brainstorm. Sadly, Dad passed away and I was flown home. When I returned to the Falklands I had a route planned in a week – walking 100 miles and climbing 44 peaks in nine days. We designed T-shirts stating ‘44 Peaks, 100 Miles, 9 Days, 1 Reason’, along with our JustGiving page and text code. We set a target of £1,500. We decided to dedicate each mountain to someone with MND, or who had sadly lost their battle – warriors and angels. We devised a banner to hold on each mountain and my wife Kim and I created a massive one with everyone’s name on for the finish line. We wanted to stand out so people would ask what we were doing. The idea of dressing as Oompa Loompas came into my head! Why? I will never know. However; it was a cracking idea and boy did it work. Our next task was to gather our 44 names. Dad was one of them but it left 43. Through Facebook we found 32 different MND group pages and posted a message on each. Within three days I’d received requests for 25 names to be added. We created a Facebook page www.facebook. com/cumbria2014 and have 1,233 followers. Crazy! An hour before we set off, we broke through our fundraising target – a great feeling. We increased it to £3,500, which we smashed on day three! The support was immense. We had created ‘business cards’ to catch those who would say ‘Sorry, I don’t have any cash on me’. Each day there were messages from people who had bumped into us and gave a donation. We were getting donations of £50 to £100. We carried a collection pot and by day seven we’d raked in £600. We were touching people’s hearts. It’s difficult to explain how good it felt. Kim got a slot on Lakeland Radio and my mum and sister spoke on our behalf. We spread some of Dad’s ashes on the 44th peak where our family were waiting. An emotional moment. In total we covered 130 miles and raised £6,248. It made our adventure so worthwhile. We would like to thank all those who supported us and donated. We’re planning our next epic adventure – obviously dressed as Oompa Loompas! Watch a video of the adventure at: http://youtu.be/bB5eg6suqNU thumb print Winter 2015 15 your stories How MND has affected your lives Living life to the full Thanks to Joycie Somerville’s important contribution, from April surviving partners of members of the Armed Forces Pension Scheme will retain their pensions for life, even if they cohabit or remarry. For her part in the landmark decision, Joycie, who has MND, travelled from her home in Lincolnshire to represent the Royal British Legion (RBL) at the Opening Ceremony of the Westminster Garden of Remembrance and met Prince Harry. This is her story: Joycie Somerville I anguished over this decision. Stay on my own, keep claiming my first husband’s pension or move in with Peter and lose it. I have bulbar onset MND and am increasingly vulnerable. I knew I needed to be near Peter. So we married and the pension was terminated. Why should any widow have to choose between love and money? The RBL took up the gauntlet, ran a feature in their Poppy magazine and made it their top priority on their 2015 16 thumb print Winter 2015 manifesto. This was launched at each of the three party political conferences in the autumn, so my appeal got mega publicity. When I awoke to see the Prime Minister making that very announcement, it just made my day! I was utterly delighted. It was a culmination of a personal appeal I had started some ten months before. They very kindly allowed Peter to accompany me to the Opening Ceremony of the Westminster Garden of Remembrance, because I have no voice. It was a long wait and my legs almost collapsed, but Peter got me a chair where I rested until Prince Harry came down the line – of course I stood up then! He spoke to both of us. He was completely charming, totally relaxed and made everyone feel at ease. I wore MND Association lapel pins and Peter ensured everyone around us was aware of MND and how it affects people. I had my iPad and wrote (and ‘spoke’) messages all day. I know physically you have scant control of MND’s progress but psychologically you do. I was determined, from the first time a neurologist suggested MND was the worst case scenario, that I would live life to the full while I had a voice and was not bed bound. Peter and I had a wish-list to visit family and friends and all those special places close to my heart. We have travelled over 3,000 miles, hosted weekends at home, and my list is almost done now. It has been a revelation. Everyone in my life knows I love them and I am myself embraced in that same emotion from family, friends, excolleagues, and of course the wonderful people I have met through MND. I don’t see MND as a negative thing at all. In a strange way, I am grateful to God that He has given me the time to accept the inevitable and put in place all the things I want to do before this wretched disease finally claims me. We are not downhearted, we laugh a lot and live life to the full. Every day is a bonus! Hell Runner challenge Worth getting muddy for Vicky Carpenter, from Didcot, quite literally got stuck in to fulfilling a fundraising promise she made to her dad. In August 2013 our dad Chris was diagnosed with MND. It was a terrible time for our family and learning that there was no cure was an immense blow. The injustice of this sentence grew a deep determination in me to fight for a cure and to start fundraising for the MND Association. Last April my husband, James, myself and four amazing friends ran as team Chris Jones in the Hell Runner – 10 miles off road tackling hills, rivers and muddy bogs. We wore blue and orange tutus. Jenny Rolfe from the Oxford MND Care Centre joined in too. It was smelly, muddy, hard work but brilliant fun and team Chris Jones raised over £3,300 – well worth getting muddy for. Dad sadly passed away in June. My husband and I had promised him we would continue to raise funds for the Association to find a cure, to help others like him and their families. This is Dad’s legacy and we will continue raising money until we win this battle against MND. Stay in your own bed Stay in control of your comfort The Comfier is a set of individually controllable inflatable tubes that convert any single or half of a double bed into a fully featured high dependency care surface in minutes. • Developed following feedback from people living with MND. • Adjust how hard or soft the Comfier feels to suit your individual needs. • Customise your Comfier by setting the firmness of each tube separately. • Unload pressure partially or completely by adding or removing air in the tubes underneath specific parts of your body. • Profiling feature gives you the flexibility of an adjustable bed. • Access specific areas for personal care without the need for you to roll or turn by removing air from selected tubes. To book your no obligation demonstration call 01937 843967 Or to find out more visit Comfort you control TM www.mobilitywithdignity.com 17 Mobility with Dignity, Unit 422c, Thorp Arch Estate, Wetherby, Email: print [email protected] LS23 7FG thumb Winter 2015 campaigning Around 1,800 people have emailed almost 1,000 parliamentary candidates urging them to make a commitment to improving access to communication support for people with MND since we launched our General Election campaign. Better access to communication support is the focus of our General Election campaign, and thanks to you support is growing. We know that 80-95% of people living with MND will experience some loss of speech before they die and too many people experience significant delays in getting the right communication equipment. Our message to parliamentary candidates? ‘Don’t let people with MND die without a voice’. Our 12 champions from across the country are standing alongside Charlie Fletcher, who is the face of this campaign, to make sure we are heard loud and clear. They have all been affected by MND: either they live with the disease, care for a loved one with MND or have lost someone to it. And they share a common goal – to ensure that until we cure this devastating disease, those living with MND get the support they are entitled to from statutory services. Technology is there Our champion Sarah Ezekiel describes losing her voice as the most difficult part of her journey with MND. She made a short film about the benefits of using eye gaze technology, using alternative and augmentative communication (AAC) to speak. She said: “Suddenly, you have a voice everywhere, people can’t wait to talk to you and see your magic computer. You give talks to health professionals, you can almost keep up with conversations and you have a very loud voice. You’re still severely disabled but part of you is back and it feels so good. Technology is there. Everyone can have a voice.” Watch Sarah’s film at www. mndassociation.org/champions Passionate about raising awareness Championing our election campaign Jan Cousins was diagnosed with MND in 2012. She is passionate about raising awareness and has written a blog. She says “Next May, my first grandchild will be born. I am so delighted and excited. I can deal with the sad fact that I won’t be able to take it for walks, play on the floor, help feed and change it. I hope I will be here to see its first Christmas, but, oh the anguish if I can’t talk to it or read it stories. Liam and Anna Dwyer outside Westminster 18 thumb print Winter 2015 campaigning “If I lose my voice, those who meet me for the first time will have no sense of who is the person locked inside this body. “Communication aids can’t replace my voice, but they can mean that I, and others like me, can still show that we have emotions, opinions and a sense of humour.” Demanding urgent action Liam Dwyer has been campaigning on access to communication support for several years. He is fed up that universal access still does not exist. He is leading a campaign in Surrey and Sussex where the problem is particularly bad. Several people with MND have been told the money for their assessment and/ or communication aid does not exist and that they should instead approach the Association for funding. Liam thinks this is unacceptable and we agree. We coordinated a letter led by Sam Gyimah MP and signed by 13 other local MPs, including Secretary of State for Justice the Rt Hon Chris Grayling MP and Government Chief Whip the Rt Hon Michael Gove MP, to NHS England Chief Executive Simon Stevens. It demanded that he take urgent action to ensure people with MND in Surrey and Sussex have timely access to communication aids. “I am proud to see our local MPs recognise the problem and come together to send a loud message to NHS England that it is unacceptable to let people die without a voice,” Liam said. “We continue to campaign to address this serious failing in Surrey, Sussex and beyond.” Meet our champions These nine champions are joining Sarah, Liam and Jan in telling their stories and gathering support for our campaign. We are showcasing them on our website and social media channels and they are organising local events and meeting with parliamentary candidates. Heather Smith: Heather, from Helen Warren: Helen is from Swindon, campaigns for change Portsmouth. Her dad was following her experience of diagnosed with MND in 2011 caring for her partner Steve, who and died the same year. “Having died from MND in 2012, aged 51. MND is heartbreaking for the She says voice ‘plays a key part in enabling person and their family,” Helen says. “Then to you to be clear about what you want to do lose your voice is just terrible.” and to receive what you want and need’. Mark Stone: Mark lives in Oxford Greg Broadhurst: Greg lives and was diagnosed with MND in Manchester and raises in 2012. “Losing the ability to awareness of MND in memory communicate is probably the of his grandfather. “People may single most terrifying aspect of not like politics on a personal MND for me,” Mark says. “We should ensure level,” Greg says, “but this campaign is about that those of us who are unfortunate enough far more than politics, it's about the basic to have MND are not further tormented by human right to communicate.” losing our ability to communicate with the rest of society before we die.” Helen Findlay: Helen cared for her father, James, who was Katy Styles: Katy Styles is the diagnosed with MND in 2005 main carer for her husband and died seven weeks later. Mark who was diagnosed with James lost his voice. a rare form of MND in 2010. “Our access to communication Rita Beaumont: Rita, from aids will be determined by where we live”, Bedford, is chair of North Katy reflects, “Where we live shouldn't Bedfordshire Branch. She is come into it.” an active campaigner and passionate about ensuring Mark Styles: Mark lives in East people get the support they need. Kent with his wife Katy (see above). He urges people to Tannwen Saunders: Tannwen support the campaign, saying: lives in South Wales. She “People who can communicate campaigns in memory of her powerfully need to make the case for better dad Carl, who died from MND provision of communication aids to help in 2009. those who can't.” Get involved “One person telling 30 politicians is just not as effective as 30 people telling one politician. We need numbers to make an impact, we need to make everyone know this is a problem and make them take a moment to imagine how it may feel to lose their voice.” Campaign champion, Helen Warren You don’t have to be a Campaign Champion to get involved. Everyone can make a difference, whether you have two minutes to spare or two hours. 2 minutes to email candidates Send a pre-written email to your candidates using our easy e-action at www.mndassociation.org/voice 30 minutes to meet with candidates Set up a meeting to talk to your candidates face to face – the most effective way of getting our messages across. 10 minutes to write to candidates If you haven’t got access to the internet, use our template letter to write to your candidates. Contact us on 01604 611684 for a copy of the letter. More time? Organise a local event Use our guide to help you. We have all the materials you will need to set up your event. For information about meeting with candidates or organising a local event, download our pack at www.mndassociation.org/localevents or contact our Campaigns Team on 0207 250 8447. Find out more at www.mndassociation.org/voice thumb print Winter 2015 19 The difference we made together in 2014 “The impact of the Ice Bucket Challenge on the Association has been truly phenomenal. In this, our 35th year it must be seen as a turning point in our history.” Sally Light, Chief Executive. Thanks “We try and have fun, raise some money, but ultimately spread the word, as we know how important that is for people living with MND and those left behind.” “I miss my mum’s hands. They were our physical point of contact for my whole life with her. So the High Five hands have been inspirational and heart warming!” “By opening the DNA Bank to these exciting new areas of research, the Association is increasing the likelihood that a breakthrough will be made sooner, rather than later.” Matthew and Richard Hollis drove to the Arctic Circle and back in an old Citroen van. Christopher Hodge’s post facebook about our MND High Five ‘selfie’. Colin Fenwick on news our DNA Bank samples will be available for new avenues of research. 88 VOLUNTEER BRANCHES AND GROUPS 8,000 MEMBERS 20 thumb print Winter 2015 £561,000 883 PIECES OF SPECIALIST EQUIPMENT LOANED GIVEN IN GRANTS TO PEOPLE WITH MNND “The more people who spread the word and talk about MND, the closer we’ll be to finding a cure.” Mark Samson, one of the faces of our Voice Awareness Month poster campaign. The difference we made together in 2014 to you “It is brave and probably breaking new ground to be so refreshingly candid with patients when describing what may happen.” Dr Colin Campbell, retired Palliative Care Consultant on the launch of our end of life publication. “I’m proud that the Association has grown from such a small group into a world-leading organisation. We never dreamed of this happening when we started 35 years ago.” Jenny Elston, volunteer and founder member of the Association. “I can cope with being trapped inside a useless body, but I struggle with the idea of losing a big part of myself when my voice eventually fails. I don’t want to die without a voice.” “I just don’t know what I would have done without the help and guidance of everyone on the online forum.” “Trying to raise awareness of a disease not many people know about can feel like banging your head against a brick wall at times.” Charlie Fletcher, the face of our Don’t Let Me Die Without A Voice election campaign. Forum member and carer Christine Bungay. Mark Maddox, fronted our Football v MND poster campaign. £3.1M SPENT ON FUNDING AND PROMOTING RESEARCH 3,000+ ACTIVE VOLUNTEERS 19 CARE CENTRES AND NETWORKS 3,468 PEOPLE WITH MND DIRECTLY SUPPORTED £0.9M SPENT ON CAMPAIGNING AND RAISING AWARENESS Figures relate to our 2013/14 financial year and are taken from our Impact Report, available to download at www.mndassociation.org/impact thumb print Winter 2015 21 care Ventilation a matter of choice With MND, the use of ventilation may need to be considered, where a machine helps support breathing. Deciding whether or not to use this support can be difficult. We spoke to three people living with MND, who have made different choices. Ventilation cannot stop MND progressing: if breathing muscles begin to weaken, this will continue to get worse. Nevertheless, although the benefits may vary, assisted ventilation can improve quality of life and help reduce anxiety and fatigue. An assessment is needed to find out if ventilation is suitable. The GP should be asked for a referral to a respiratory team where staff can help an individual make an informed decision that feels right for them. Personal needs, current condition and wishes about future care may all play a part in decision making. Susan Bingham, from Northamptonshire was diagnosed with MND in 2004. She is unable to walk or speak and has no power in her hands – but her mind is as active as ever and she has a zest for life. Susan has decided not to use ventilation or tube feeding. “I have never felt ill and I am not in any pain,” she explained. “The most devastating thing has been losing my voice, as I was, and still am, a chatterbox! The best gadget I could ever have is my Lightwriter, my way of communicating with the outside world.” Susan explained why ventilation was not the right choice for her. “I don’t want medical interventions because I only have a short time to live, so the trauma of having procedures, just for a few extra months, is not for me,” she said. “I believe in dying naturally.” She says she feels fortunate to have a paid carer, whose support improves her quality of life in many ways. Amanda cares for Susan six days a week, ten hours a day, including all of her personal care, and liaises with professionals. “We are a team, it is like a marriage,” said Susan. “She is my voice, my arms and my legs. I don’t know what I would do without her.” Care worker Amanda agrees that personal choice is of vital importance. She said: “Susie knows exactly what she wants to do and it is up to me to help her with that.” A tricky decision Roch Maher, from Hounslow, was diagnosed in 2009 and uses non-invasive ventilation for 15 hours a day – mostly at night. He accepts his decision to use noninvasive ventilation (NIV) was a tricky one. He describes ‘being in the middle of a love-hate relationship’ with NIV. He added: “I’d thought it was the difference between staying alive or not, but at first, it’s more to do with energy and the ability to get up and go.” However, he added: “It takes time to get used to NIV. In fact, it will probably never feel completely normal.” Roch found NIV a difficult decision to make as it meant thinking ahead about end of life issues. He said: “What tipped it for me was that at any future point, I could ask for NIV to be withdrawn. And if, by that stage, I was unable to breathe independently, I would be made comfortable.” A valued member of our care information user review group, he recently tested our information sheets on breathing and ventilation. “I found them an excellent resource and, despite using NIV overnight since December 2013, I learned a lot.” Well worth it Ron Stevenson, from Haywards Heath, began using a ventilator soon after diagnosis when his consultant at Queens Medical Centre referred him to the respiratory team. He initially used a machine to keep oxygen levels up at night and relieve morning headaches and exhaustion. Although he found it difficult, he was encouraged to persevere. Over the years his ventilator usage has increased and Ron is now dependent on the breathing machine. “We were very anxious to extend a good quality of life for as long as possible and the way to do that was to battle through with this wonderful machine,” he said. “I simply wouldn’t be here without it, and it’s well worth it as I still enjoy life.” The use of nose prongs during the day and a full face mask at night has relieved the impact on Ron’s nasal passages following infections. Gill, Ron’s wife and carer, has become an expert in setting and adjusting the machine. “We were very anxious to extend a good quality of life for as long as possible and the way to do that was to battle through with this wonderful machine.” Ron’s current bilevel positive airway pressure (BiPAP) machine is portable and battery powered which means he can get out and about and enjoy visits to his local hospice, providing respite for Gill. Finding out about the options for ventilation, as soon as possible, provides time to think and understand what choices mean, now and in the future. Early decision-making means wishes and preferences are known by everyone involved in someone’s care. Information on ventilation We have re-launched our range of information sheets about breathing and ventilation with MND: 14A - Understanding how motor neurone disease might affect breathing 14B - Ventilation for motor neurone disease 14C - NICE guidelines for non-invasive ventilation 14D - Troubleshooting when using noninvasive ventilation 14E - Air travel and ventilation for motor neurone disease Download these at www.mndassociation. org/publications or order printed copies from MND Connect: 08457 626262, email: [email protected] Ron Stevenson is dependent on his ventilator 22 thumb print Winter 2015 care Types of ventilation: Non-invasive ventilation (NIV): A portable machine helps boost intake of air through a mask. This covers the nose, or nose and mouth, depending which is most comfortable. NIV is usually needed overnight at first. As the disease progresses it is likely to be used more often. NIV can prolong life, but as breathing muscles continue to weaken, there may come a time when NIV is no longer effective. Invasive ventilation (tracheostomy or trache): A machine takes over breathing via a tube inserted into the windpipe through the front of the neck. This is less likely to be offered, although some people with MND use this type of ventilation. Although the machine can take over breathing if needed, the disease continues to progress, so plans for future care should be considered. If ventilation is not suitable or the decision is made not to use it, the respiratory team can advise on other support, including: • posture and positioning • breathing exercises • help to cough • medication to ease symptoms and anxiety In most cases, ventilation for MND uses normal air to support breathing. Extra oxygen is not usually recommended with MND as it may be harmful. However, it may be used with caution if someone’s oxygen levels are low. thumb print Winter 2015 23 volunteering Privileged to make a difference Providing confidential emotional support, accurate information and help to access services and equipment, our 300 Association Visitors (AVs) play a key role in delivering our care support for people with MND. It’s a challenging yet enormously rewarding role designed to be flexible to fit around a volunteer’s lifestyle. Two AVs share their experiences. 24 thumb print Winter 2015 volunteering A conversation with a friend seven years ago led Joan Randell to take on a volunteering role which she says has changed her perspective on life. A retired medical social worker, Joan from Northamptonshire became an Association Visitor (AV) in 2007, and since then she has supported 18 families affected by MND. “I went to lunch with a friend who was an AV and she told me about the work they do,” she explained. “I found it very inspirational and I felt I had a lot to offer and that I had the background to be an AV. “I got in touch with the Association to express my interest in becoming an AV and that’s where it started. The conversation was just good fortune.” Professional and personal experience, including the loss of her husband to a neurodegenerative condition, has helped Joan in the role but she says personal qualities are far more important. “My knowledge of the health care and social care system and experience of being a carer for my husband have been a tremendous help to me, but what is important is that all AVs have different personalities, approaches, experience and skills,” she said. “Above all, to become an AV you need to like people and want to help people. It’s important to be able to engage with individuals in all circumstances and to be prepared for different environments, lifestyles and approaches.” Joan currently spends around three hours a week on her AV duties, although the amount of time committed to the role varies significantly from one volunteer to another. “I support people living with MND, their carers and the extended family,” explained Joan. “I offer face-to-face and telephone support and also communicate with people via email. “I see myself as a befriender and listener. I have become part of the journey that people with MND have to make, but at the same time I have to remain apart from it. My role is to give people the opportunity to talk about their fears and anxieties, empower them and to be nonjudgemental.” Joan has a close relationship with local health professionals who she says ‘respect and value’ those in the AV role. “AVs signpost to and liaise with professionals. Sometimes, people affected by MND don’t know their way around the health or social care system so I help them find the information and resources they need,” she explained. “Above all we give people the permission to share with us how they feel. They share their innermost thoughts and it’s a privilege that they allow me into their lives and homes.” While Joan acknowledges some conversations can be challenging, such as those on end of life issues, she says ongoing training and support means she is well prepared for the role. “We have AV meetings once every six weeks and I find them very useful. Rachel Boothman, our Regional Care Development Adviser (RCDA), shares with us what’s happening within the Association and AVs can talk to each other about problems they come up against. The support Rachel gives to us and the support we give each other is invaluable. “It’s comforting to know Association staff are there should I experience any problem or difficulty. I feel we are valued by the Association.” Joan says it’s a rewarding role and one she would recommend to others. “The ‘thank yous’ are so meaningful. It’s very rewarding to hear ‘I really appreciate what you have done’. I feel privileged to be able to make a difference to people’s journey and life through this awful disease. I’m very passionate about what I do. “It is very humbling and so rewarding. I have met some lovely people and it has changed my perspective on life. It is something that I really value.” We are recruiting AVs The number of people with MND that we are in touch with is increasing and we have ambitious plans to recruit many more AVs and to explore other caring roles and activities to meet their changing needs. Would you like to find out more about the AV role? Please contact us on 08456 044150, email volunteering@ mndassociation.org or visit www. mndassociation.org/associationvisitors A fresh perspective William Roberts from London has a fresh perspective on the AV role having completed his AV training early last year. He currently visits one man with MND. The 27-year-old prospective medical student came across the AV role while searching for a long-term volunteering opportunity. “As a prospective medical student I had previously engaged William Roberts in some short-term voluntary roles and while rewarding and valuable experience they lacked the development of relationships with people,” he said. “I began searching for some longterm voluntary roles when I came across the AV role for the MND Association. I had had no experience of MND beyond awareness of high-profile cases but I believed I could really make a difference on an individual level with this role, as well as learning a lot from it.” William said the Association went to great lengths to make sure he was suitable. He said. “An interview and exposure to branch meetings prior to the AV training course ensured that potential volunteers were fully committed and gave them the opportunity to decide whether the role was right for them.” The training course ensured William was well prepared for his first visit. “It was an enlightening course led by people who are clearly very knowledgeable and experienced in healthcare. They understood any potential concerns volunteers may have and by the end of the course I felt more than ready to go out and get stuck into the role.” Understandably, William felt a little nervous before his first visit but a member of staff was on hand to offer support. “The RCDA for the area accompanied me on my first visit and supported me through it. It was a valuable learning experience and I am now looking forward to helping this person in any way I can.” Association visitor Joan Randell thumb print Winter 2015 25 care We’re working to educate and inform more health and social care professionals about MND – and we need your help Supporting professionals to support you When you’re affected by MND, you’ll be in contact with a number of different health and social care professionals. Some of these will be specialists, or have experience or a specific interest in MND. However, there may be others who know little about MND, often because they haven’t seen or treated many people with the condition. We’ve heard from many of you about how important it is for professionals to have a good understanding of MND and how it affects you, and what a difference this can make to your quality of life. Here are just a few of the things we’re doing to improve MND knowledge with doctors, nurses, therapists and care workers – among others – and how we can work together to make this happen. Sharing knowledge at our RCN event Education partnerships and events We work with many partners, including royal colleges, other charities, professional bodies and universities. Partnering with other organisations not only increases the impact our work can have and the audience we reach, but it 26 thumb print Winter 2015 also gives us access to specific skills. By working with universities, for example, we tap into their knowledge of course development. Through our partnership with the University of Northampton, we are developing educational modules for care workers, as well as courses at undergraduate and postgraduate level. More recently, we have been exploring opportunities for volunteer recruitment and wider research projects with universities. Our partnership with the Royal College of General Practitioners (RCGP) has led to the development of Red Flags, a tool that supports GPs to recognise the potential symptoms of MND. The aim is to improve the time taken to diagnose the condition, by encouraging GPs to refer to hospital neurology services as soon as possible. Alongside the tool, we’ve also created a Red Flags presentation and online module, both of which are accredited by the RCGP and help GPs to gain recognition for the education they’ve received on this topic. These resources fit with the requirement on GPs to demonstrate their professional development. Working alongside other membership organisations allows us to share information with their specific networks of professionals, or to ask these professionals what they need from us. Hosting events in partnership is one way of doing this. For example, we worked with the Royal College of Nursing to deliver a successful conference focused entirely on MND (see page 32). This year, we will deliver a lecture series at the RCN Library and Heritage Centre and will be developing an MND nursing module. Similar projects are underway with Hospice UK and the College of Occupational Therapists. “As MND affects people so differently, it is important to have a way of drawing on other professionals’ experiences and knowledge.” Working with other organisations and their members ensures we know what professionals want from education activities. A positive educational experience can help raise awareness of the Association and the services we can provide to professionals and their colleagues, as well as to the people with MND they support. Information resources We’re creating a new range of resources for different groups of health and social care professionals. About to launch is a booklet aimed at professional care workers, and we’re also working on a resource for hospital accident and emergency staff. At the same time, we’re updating our popular booklet for GPs and the primary care team, along with our range of information sheets that cover information such as managing saliva and respiratory symptoms. We’re developing an online hub of upto-date, evidence-based information on all aspects of MND at www.mndassociation. org/professionals Over the next year, we’ll be working towards gaining accreditation for the care How you can help Our information is designed to help professionals such as Jayne Tooth, Day Hospice Manager at St Giles Hospice, Lichfield, to support people with MND. Jayne is pictured with Richard Morris, a day visitor at St Giles. quality of our professional resources. Our aim is for these resources to be as highly regarded as our care information, which carries NHS England’s quality mark, the Information Standard. Professionals’ Forum Our Professionals’ Forum, launched towards the end of last year, is proving a valuable online tool for health and social care professionals. From wherever they are, they can connect with other colleagues across the world to share information and ask questions about all aspects of MND. Barbara Strevens, an Occupational Therapist, described the Forum as: “An ideal way for professionals working with people with MND to link with each other. “As MND affects people so differently, it is important to have a way of drawing on other professionals’ experiences and knowledge. By spreading the word on this forum we can expand our skills and enhance patient care.” Members are kept informed with news and information from across the Association, including educational events and opportunities to support us in research and campaigning. Collaboration and knowledge sharing among professionals is key to improving understanding and raising awareness of MND. Health and social care professionals can register to join the discussion at proforum.mndassociation.org Regional Care Development Advisers (RCDAs) You may already be aware of our RCDAs – they work closely with health and social care professionals to help them provide effective support for people with MND. Many of them are from health and social care backgrounds themselves, and they offer training in MND to all types of professional. They’re also champions at influencing care services in their respective areas. Contact MND Connect 08457 626262, email: [email protected] for details of your local RCDA, or visit www.mndassociation.org/rcda You can help us to reach more health and social care professionals with our information, education and Professionals’ Forum: rder information resources from O MND Connect to take with you to appointments. Encourage your healthcare team to join our Professionals’ Forum at proforum.mndassociation.org Raise awareness with your GP. If you have an appointment with your doctor coming up, please pass a copy of our Red Flags tool to your GP. While you are there, you could also ask them to sign up to our MND Charter. Materials are available at www.mndassociation.org/gpaction or from Tina on 01604 611684. We’d also like to hear what you want the health and social care professionals you come into contact with to know about MND: this will help us to create relevant information resources in print and online. Please email infofeedback@ mndassociation.org or contact Bev Goodman, Professional Information Developer, on 01604 611866. thumb print Winter 2015 27 Report highlights NHS failures People with MND are waiting too long for speech and language therapy appointments and vital communication equipment, according to a new report published by the All-Party Parliamentary Group (APPG) on MND. Condemned to Silence publishes the findings of an inquiry chaired by Madeleine Moon MP in autumn 2014. It attracted over 1,700 submissions of evidence from across England, Scotland, Wales and Northern Ireland. The report was recently launched at a parliamentary reception jointly hosted by the APPG and the MND Association. Key findings: The NHS in England has failed in its duty to provide communication equipment to people with MND: Charities continue to plug the funding gap: How you can help Please use our APPG report summary card to talk to your local candidates about this important issue. They may come door knocking canvassing for votes, or you could arrange to meet them. Questions to ask candidates: Do you know what motor neurone disease is? Have you seen/read the recently launched APPG report on access to communication equipment for people with MND? and maybe as little as 25% There is no statutory duty on the NHS in Wales and Northern Ireland to fund communication equipment. People with MND are waiting too long for appointments and vital equipment: A crisis in speech and language therapy is looming: Do you agree that people with MND should have access to the right communication equipment at the right time? Will you support the MND Association’s ‘Don’t let me die without a voice’ campaign by: • S igning the MND Charter in support of local people with MND and to show your commitment to working with the Association on this urgent matter? Candidates can sign at www.mndassociation.org/ charter • E nquiring locally about communication services for people with MND? Urge them to visit www.mndassociation. org/voice We will be using the report to campaign for better access to communication support for people with MND as part of our general election campaign (see pages 18/19). Copies can be downloaded at www.mndassociation.org/appgreport2015 The APPG report clearly shows the NHS has failed in its commitment to provide communication equipment to people with MND. Political commitment and urgent action is needed. 28 thumb print Winter 2015 Make sure you pass them a copy of the summary card enclosed with this magazine as a reminder of these actions. It is also available to download at www.mndassociation.org/ appgreport2015 or order a printed copy on 01604 611684. ice bucket challenge Ice Bucket windfall In a few short weeks last summer, you and the great British public raised an astonishing £7 million for the Association through the Ice Bucket Challenge. We asked you to tell us how you thought the money should be spent, and this is what you had to say. At their meeting on 31 January, our Board of Trustees was due to discuss ideas for spending the windfall, which have been informed by the views expressed in the survey. More than 2,000 of you took the opportunity to have your say. We asked you to choose your top three areas for investing the funds. Overwhelmingly, 88%, or 1,759, of you answered that you felt the money should be spent on research into the causes of MND and new treatment strategies. You said: “Research into the causes of MND and new treatment strategies is really very important. Since the 1980s, awareness is so much greater than treatment and diagnosis can only improve when the causes are known.” “A cure is the most important thing.” Research into improving care for people with MND was also a high priority with 51%, or 1,020, people choosing this option. It was also felt that more help for carers, such as respite care, was vital. Access to the very best standards of palliative care was a key consideration. You said: “Patients need excellent palliative care. There was nothing at all for my husband.” “Provide fully-trained nurses to go into people’s homes to help support carers.” your views Some 739 members, or 37% of the respondents, wanted the money to be spent on increasing education for health and social care professionals. You said: “We need additional education for hospital staff who don’t fully understand MND. When my grandfather was in hospital this time last year, he had people picking him up and moving him about with his sore arm, and because he couldn’t speak, they continued to do so.” While we decide how to best make use of this totally unexpected windfall, the added financial security has allowed us to HOW YOU WANT THE MONEY SPENT: 88% * ON RESEARCH INTO CAUSES AND TREATMENTS 51% * ON RESEARCH INTO IMPROVING CARE 37%* ON MORE EDUCATION FOR PROFESSIONALS *Percentage of respondents who chose this area in their top three fast track several new projects including seven research grants totalling £1 million to UK research teams and studies. These are aimed at understanding the causes of MND, the processes which lead to motor neuron regeneration and the development of new approaches to treating the disease. Six new PhD studentship projects will also start shortly, totalling over £500,000. These involve cutting-edge research and draw on the next generation of young scientists in the expanding world of MND research. Thanks to the Ice Bucket Challenge, we can accelerate our genetic research programmes. We are embarking on a major initiative to find the genetic factors that not only predispose people to MND, but also the factors which may slow the disease in some people. We also plan to further develop our specialist MND Care Centre programme, while campaigning for more statutory support for people living with MND and all those who care for them. We know the needs of carers and young people are very important and we are committed to doing more in this area. One of our first actions has been to provide Young Person’s Grants. We have pledged to offer ten grants per month of £250 per grant for young people aged 17 and under who live in the household of a person with MND or who have a parent or guardian with the disease. Already, grants have been agreed for tutoring costs, driving lessons and a new laptop, as well as classes for martial arts, music and dance. For more information about how to apply please contact your local branch or group. The results of the survey have been analysed and will be considered in conjunction with our strategy to identify where the money will make the most difference to people with MND. Look out for further updates in Thumb Print and on our website and social media channels. thumb print Winter 2015 29 news Bill update Snowman Bucky strikes a chord The Assisted Dying Bill reached committee stage in the House of Lords towards the end of 2014. This is the stage at which a Bill is discussed line by line and amendments tabled and voted on. So far only the first part of the Bill – clause 1 – has been scrutinised in this way. Several days are usually needed to discuss entire Bills. At the time of going to press, the second day of committee stage was due to take place. We know that the Prime Minister has said he is not convinced by the arguments for legalising assisted dying and we believe the Bill is unlikely to progress significantly through Parliament before the General Election. You can follow progress at http:// services.parliament.uk/bills/2014-15/ assisteddying.html We have been hugely moved by the response to our Christmas appeal and we are delighted that Bucky the snowman struck a chord with our members and supporters. This is a critical time for the Association. Following the huge success of the Ice Bucket Challenge the disease is, at last, at the forefront of public awareness. We intend to seize this historic opportunity and keep pushing forward towards treatments, and ultimately, a cure. It is wonderful to know that we can rely on you. The momentum against MND is building, and we have to keep it going. Care information is award winning We have been officially recognised for the clear information we provide for people with MND. Our An easy read guide to motor neurone disease and our new Introduction to motor neurone disease have each won a Plain English Award. And in September our core guide Living with motor neurone disease was shortlisted for Patient Information of the Year at the British Medical Association (BMA) Awards. The BMA highly commended the publication and said: “This is an excellent resource for people living with MND. It takes readers along a logical and comprehensive pathway, acting as a friendly, but independent guide to the issues and questions they may face.” Our publications can be downloaded free of charge from our website at www.mndassociation.org/publications Alternatively printed copies are available from our helpline on 08457 626262 or [email protected] 30 thumb print Winter 2015 With your continued support, we will be able to say ‘yes’ to more research proposals while continuing to expand the scope of our care services, providing people affected by MND with the support, information and equipment they need. And we will continue campaigning hard to make sure the voices of everyone with MND are heard by key decision-makers. Once again, our sincere thanks for your support in 2014. Here’s to an even more successful 2015! Do you have experience of Association Visitor network? Recognition for care centre The Manchester MND Care Centre team has scooped a Contribution to Patient Care award. Nominations for the Salford Royal NHS Foundation Trust awards were made by patients and professionals and all members of Trust staff were invited to vote. Samantha Holden-Smith, Manchester MND Care Centre Coordinator/Specialist Nurse said the team was ‘incredibly proud’ to have won. “As a care centre we continue to strive to work toward developing a service which continues to meet the needs of all those living and working with MND, so receiving this accolade has been very special to the team,” she said. “Thank you to the Association for the support we receive as a care centre to facilitate this service provision.” If so, we’d like to hear from you! We are currently undertaking some research to find out the impact of our Association Visitor network on people living with MND, their families and carers. Throughout March and April, we’ll be talking to people with MND, families, carers and volunteers in a number of different ways including: discussion groups, face-to-face interviews and an online survey. If you’d like to contribute to the online survey by sharing your views, we will be promoting the link to the survey on our website and on Facebook pages during March and April. So please look out for the link and take part! Your views mean a great deal to us. Why are we doing this evaluation? We are doing this evaluation so that we can further develop the service we provide and demonstrate its impact on people living with MND, their families and carers. If you have any questions about the evaluation or would like to be involved in a focus group, please contact the Volunteering Team, volunteering@ mndassociation.org news Rescuer awarded for bravery A young woman who saved a man with MND when his scooter toppled into a stream has received an award for her bravery. Natalie Thurston jumped into a river to rescue Melvyn Fisher, from Lancing, West Sussex. Following a three-month hospital stay, Melvyn, who has lived with MND for 18 years, is making good progress. He recalled the incident: “I was reversing slowly looking at a duck’s nest, then in seconds I suddenly rolled over the bank and into the sewage stream. “I went under the water and hung on to some tree roots – I thought I was going to drown. Then suddenly I felt this person grab me and hold my head above the water – this was Natalie, my hero.” Natalie was presented with her award at West Sussex Fire Service Headquarters in November. Couple married – by their Association visitor A couple affected by MND have been married – by their Association Visitor (AV). Jan Brown and Bob Williams, who has MND, first met West Berks deputy registrar Gill Weeks when she visited them in her AV role. Jan and Bob with Gill The couple got on so well with Gill, from the Reading and West Berkshire Branch, that they hoped she would be able to tie the knot for them on their big day. Fortunately Gill was on duty that day she was delighted to conduct the ceremony. “It was very personal and very special”, said Jan, from Newbury. “Gill is great as our Association Visitor and she did a lovely job at the wedding too.” She said getting married was on a bucket list drawn up by Bob, a 64-yearold retired accountant. Jan explained: ”Bob wanted us to get married while he was still strong enough to enjoy the day. Now we will face living with MND together – it has made us much closer.” The golf-loving pair, did a sky-dive together and now Bob wants to do more flying activities and drive a steam train. Jan, who gave up work so they can spend their time together, said: “We don’t know how long we will have together so it gives us more time to make the most of life.” Growing awareness at Chelsea We will once again be ‘growing’ awareness of MND with a garden at the RHS Chelsea Flower Show. Our 2015 entry will take a nostalgic look back to the past and feature a once-busy forge in a state of neglect because the blacksmith has MND and is unable to work. Our thanks to designer Jodie Fedorko and Martin Anderson MBE, who is one of our founders, for making the garden possible. In 2013 our Outer Hebridean entry – the Association’s third Chelsea garden part-designed by Martin – won gold. HRH The Princess Royal joins a round-table session Princess contributes at forum HRH The Princess Royal shared her thoughts on issues affecting carers when she attended our annual Association Visitor (AV) Forum. Our Royal Patron was guest of honour at the event in Stratford-upon-Avon. She took part in a round-table session on carers, in particular the role of young carers, before thanking our volunteers for the difference they make. More than 60 AVs attended the October event to hear about progress being made in implementing our strategy, to network and to take part in workshops on carers and diversity. Roger Hurdman, from Birmingham and Solihull Group, met HRH and chatted about the AV role. “Her attendance was greatly appreciated and she took time out to participate in conversations with each group at the event,” he said. “Her knowledge of MND and understanding of the work of the Association was clearly evident.” Radio appeal Good Morning Britain presenter and Association Patron, Charlotte Hawkins, has spoken of her family’s experience of MND for a BBC Radio 4 Appeal. Charlotte’s father Frank had MND and sadly died in January. Charlotte tells listeners how important the support of the Association has been to her family. In addition to highlighting our work, the three-minute programme will appeal for donations to support our activities. It was due to be broadcast on 25 and 29 January. thumb print Winter 2015 31 news Watch our conferences online Our first Regional Conference will be held in February, launching a series of new events to provide more opportunities for people affected by MND to gather throughout the year. The first conference in Reading on 1 February will be followed by events in Manchester, 19 April; Stansted, 19 July and Leeds (tbc), 25 October. The events are aimed at people with MND, their families and carers, and are open to all those with an interest in our work. They will be live streamed to reach as many people as possible. There will be no charge for people living with MND and their carers and the fee for other delegates is £15. More information about the conferences, including registration and how to access the live streaming, is available online at www.mndassociation. org/regionalconferences and from the Conference Team on 01604 611837 or [email protected] From left, MND Association Chief Executive Sally Light, RCN Chief Executive Dr Peter Carter and guest speaker Baroness Finlay of Llandaff. Educating healthcare professionals Association and the RCN. More than 100 nurses The day included and other healthcare presentations on topics professionals attended our including respiration, first joint conference with maintaining independence the Royal College of Nursing and palliative care. in November. The event, Working with professional The MND journey – through bodies enables us to patient and practitioner eyes, Dr Lucy Davies, GP, signs our MND understand what professionals held at the Royal College Charter at our joint conference with need from the Association and of Nursing in London was the RCN. to share information to support them to the first in a programme of educational do the best they can for people living with opportunities being delivered thanks to MND (see pages 26 and 27). an exciting new partnership between the On target to achieve our strategic goals With the start of a new year comes the opportunity for reflection and the time to review our progress over the past year. At the end of 2013, we agreed and published a new three-year strategy, setting out the plans and goals which we hope to achieve for people with MND by the end of 2016. This strategy was informed by the whole Association family. Delivering At the end of the first our mission for people year we reviewed our with MND and everyone who cares performance against for them: the goals outlined to ensure we are on course to hit our 2016 targets. We are happy to report that we are making good progress against the majority of our 56 goals within the strategy which relate to our three mission areas: care, research, campaigning and awareness, and our supporting activities of partnerships, education, people, income and governance. In fact a combination of hard work and Our shared commitments and plans for the next three years 2013-2016 32 thumb print Winter 2015 external factors has helped us to move ahead of where we expected to be at the end of 2014. The areas where we have made most progress include: Income and awareness: While we were already on course to outperform our targets for income and MND awareness, the Ice Bucket Challenge in the late summer led to an unprecedented surge of awareness and an extra £7 million income. At their meeting on 31 January our Board of Trustees was due to discuss ideas for spending the windfall. We are also working hard to maximise the extra awareness generated by this global phenomenon. See page 29. Genetic research: We recently received ethics approval for new uses of the MND DNA Bank, helping to establish it as one of the best DNA resources in the world. More than 1,000 of our DNA Bank samples will also be used by Project MinE, an international collaboration currently involving 11 countries to identify the genetic basis of MND. Personal health budgets: While the Government’s timetable for the rollout of personal health budgets has slipped, we have maintained our own activity to increase the knowledge and understanding of our own staff, and that of health and social care professionals involved in MND care. Our Chief Executive Sally Light said: “There is much for all of us who are part of the Association to celebrate in terms of genuine progress in the delivery of our mission for people with MND, their families and carers. “We move into the second year our of strategy in a very strong position. Progress against almost all our 56 goals is either on or ahead of schedule. “It is clear to me that 2015 and 2016 will be exciting years for the Association, as we strive to move closer to our vision of a world free from MND.” news from our chair Welcome to my first Chair’s column for Thumb Print! My election at September’s AGM seems a long time ago, but I remember clearly the Alun Owen message I expressed in my address of the power of working together. I am pleased to report that we are demonstrating our strength in this incredibly well. Staff at David Niven House have been very busy recording suggestions for spending the Ice Bucket Challenge money. The ideas have been ‘pouring’ in from trustees, members, volunteers and staff. As you read this, the Board will be making decisions on how to spend the money – making an immediate and positive difference to those affected by MND. 2014 was an amazing year for all of us – the awareness gained from the IBC was and remains tremendous; so many more people now know about MND and are ready to help. 2015 continued this theme with the opening of the magnificent film, ‘The Theory of Everything’ and I was privileged to attend the premiere with other volunteers. The generosity of Cineworld and Odeon cinemas helped us to build on awareness-raising opportunities by allowing collections in their cinemas nationwide. As volunteers, all this publicity helps us in the fight towards a ‘World Free from MND’ and I know that in my branch in Merseyside, it has inspired us to think of more opportunities to work together raising awareness and funds to continue this fight. I have been busy with both branch activities and Chair duties. We were thrilled to welcome HRH the Princess Royal to a celebration of our Association Visitors in October where our Royal Patron spoke to everyone present. I attended an MND Research Dinner, a number of local branch meetings to celebrate the work of volunteers, chaired two Board meetings and played my part in finance and budget-setting meetings. I also squeezed in playing in my band for an MND Association fundraising dinner. The sheer amount and variety of what we all do demonstrates that by working together, we all achieve so much more, the Ice Bucket Challenge income is proof of that! Good luck with your activities over the coming year and thank you for all you do. I look forward to meeting many more of you at our conferences and branch and group meetings around the country. Alun Owen, Chair, Board of Trustees Anto Finnegan Game for Anto From left, John Collins, Antony Oxley and Pete Collins 2,014 reasons to celebrate Brothers Pete and John Collins and their friend Antony Oxley completed a series of challenges covering 2,014 miles in 2014 – and together raised £40,000. The year-long fundraiser saw them cycling from John O’Groats to Land’s End, pedalling between England’s ‘big six’ cricket grounds, running several half-marathons, taking on a duathlon and running 45km over nine different European countries in 24 hours! For the final leg of their challenge, Team MND cycled 63 miles before celebrating with a black tie ball with family and supporters. John and Pete lost their dad to MND. Thousands of Gaelic football fans demonstrated their solidarity with former Antrim captain Anto Finnegan in his fight against MND. The 41-year-old launched his ‘deterMND’ campaign after he was diagnosed with MND two years ago. To highlight the campaign, an Ulster select team took on Dublin in a unique challenge match at Kingspan Stadium, home of Ulster Rugby in November. Game for Anto was watched by a crowd of 6,200 and raised £68,000 to support our work. thumb print Winter 2015 33 fundraising Finding a new focus through fundraising When much-loved dad-of-two Steve Blakeley passed away he left a huge gap in the lives of his family and many friends. But during their time of loss they have found mutual support and a new focus thanks to Team Blakeley, a group that raises money for an MND Association Tribute Fund set up in Steve’s memory. Steve, a popular sales and marketing director from Lancs, was diagnosed with MND in May 2009. His wife Jacqui and the couple’s children Connor, 15 and Jade, 13 are among the family and friends who make up 20-strong Team Blakeley. The Tribute Fund was set up by Michelle Nix, who learned about the fundraising Guests at the charity ball opportunity when she visited our website to order ‘in memory’ envelopes for brother-in-law Steve’s funeral. “As the years went by and MND took its hold, Steve only wanted to see a very close knit group of family and friends,” she said. “When he died we took comfort in spending every evening together sharing memories and talking about how remarkable, brave and inspirational Steve was. “Around 400 people attended Steve’s funeral. I realised many wanted to share their memories and also donate to the Association to help find a cure for this devastating disease.” Soon after, plans were made for a charity ball. Within six weeks the friends had created a Facebook page, designed a logo, sold 300 tickets and raised £11,000 for the Association. Michelle said Steve was an inspiration to all who met him. “He never had a bad word to say about anybody and everybody loved him,” she said. “He was a fantastic husband and couldn’t wait to get home from work every day to see the children.” Fundraising events planned for 2015 include another charity ball, a football match, and individual sporting activities. They will all be branded with Team Blakeley’s magpie logo, and all the money raised will be recorded in The Stephen Blakeley Tribute Fund. “Steve died at a hospice and when we Steve, Jacqui, Connor and Jade left there were two fat magpies on the wall cuddling each other. Jacqui felt it was Steve cuddling his sister Lynn who died 20 years ago,” explained Michelle. “Fundraising for Steve’s Tribute Fund has been a really good focus and we’ve raised over £32,000. The events throughout the year have also brought us together more. I truly believe that Steve has encouraged us all to do this in his memory.” To find out more about our Tribute Funds please visit www.mndassociation.org/tributefunds or telephone 01604 611864. Three peaks team building - no mean feat night’s sleep possible in a bunk house with Sales Director, David Knight, was keen eight to a room. This was no easy task.” for his Miele employees to join in a team The team started bright and ascended building and fundraising exercise. Ben Nevis with clear skies, cloud cover and As his mother had recently been snowy patches of rock. After a long drive, diagnosed with MND, he nominated the Association as his chosen charity for their Three Peaks Challenge. Each member was set a minimum fundraising target of £200, and monthly meetings and training days were held. David said: “With a plan in place we set off for Fort William collecting our guides on the way (Ed Docwra and The Miele team team from Mountain Munchkins) not Scafell was completed in total darkness. long before gaining a shout out on Radio “The ‘rockier’ of the mountains were 2! After a high carb meal (and glass of wine a tough challenge with morale low and or two) we settled down to get the best 34 thumb print Winter 2015 injuries high. Hot chocolate awaited the climbers hosted by our incredible driving team!” explained David. “Finally, after drive and climb number three we summited Snowdon completing the challenge in glorious sunshine.” Of the 12 who started the challenge, seven achieved two peaks and six all the climbs, no mean feat. David said: “Our sincere thanks for all the generous donations from friends, family and our Miele Business Partners. We raised over £10,000. “This amazing experience has led to an awareness of MND among all of our colleagues and friends and has also benefited our working relationships as a team.” down your way thank you to all those who raise vital funds and awareness to support our work. Here is a small selection of recent events – share your pictures at www.facebook.com/mndassociation Mighty teamwork: Vivienne Copeland, from Bury, took part in the Manchester 10k thanks to the support and stamina of her friends Lesley and Christine, and son Tom. They raised over £4,000. Down memory lane: Tom Kinver, from Devon, rode his granddad’s bike from Northampton to Devon in one day, re-tracing a route he had cycled more than 60 years ago. Tom said: “My granddad always loved telling stories of his time in the RAF and of his adventures racing his bicycle around the country.” Tom’s extraordinary ride, on the first anniversary of his granddad’s passing, raised £1,700. On top of the world: Sharon Collins, from Woking, conquered Uhuru Peak, Mount Kilimanjaro in loving memory of her uncle Mick. Sharon battled against lack of oxygen, cold and exhaustion to raise £1,400 for our work. “The whole experience was totally amazing but the summit climb was by far the toughest challenge I have ever faced – both mentally and physically!” she said. Creating a stir: A picture-perfect Alice in Wonderland scene was staged by Justine Starling from Beccles, for a bakeit! fundraiser in memory of her father Timothy Law. She said: “Even though we knew MND had taken control of dad’s body we didn’t let it take control of his life. He was a wonderful father, selfless and caring and always put his family first.” Eyes to the skies: Samantha Skellett raised over £600 for our work with a sky dive. Sam, from Stamford, cares for Ned Cullen who has MND, and said: “Ned came along just to watch me skydive along with his wife Heather, young son Rory, his dad Andrew and his in-laws.” Tutu much fun: The Cope family decided on a ballet theme for their Walk to d’feet* in memory of Bernard Cope and wore orange tutus! Their fun-packed day raised £4,500. Walking the walk: Kenilworth’s Malcolm Doughty and Peter Herd raised funds in honour of their friend and excolleague Rod Macdonald, who died from MND. Their Arden Walk saw them cover 26 miles in a day and raise £2,023, boosted by a further £1,500 matched funding from their previous employer Barclays. At their peak: Kate Perry from Normanton, West Yorks, and her team took on the Yorkshire Three Peaks Challenge and conquered Pen-y-ghent, Whernside and Ingleborough in 11.5 hours! Kate is fundraising in memory of her mum Patricia. *Walk to d’feet is a Trademark of The ALS Association and is used with permission. All rights reserved. thumb print Winter 2015 35 down your way The Beautiful Game: Cheryl Nash from Beccles and her family organised a World Cup-themed Walk to d’feet*. Adorned with Brazilian flags, face paint and magnificent headdresses, they raised £137. Memories ‘n’ Dreams: North London Branch Patron actress Lily James gave a warm welcome to supporters at the branch’s Memories ‘n’ Dreams Walk at Trent Country Park, Cockfosters. Following a communal ‘warm up’ Lily, who plays Lady Rose in Downton Abbey, wished 130 walkers and runners good luck before they set off around the park. More than £5,000 was raised. Pictured are winners Joe and Leo Chadwick. Running through the town: Emma, Phil and Deborah ran the Robin Hood Half Marathon and raised over £2,000 in memory of Jan Kara. Go dad!: Paul Dorrell, from Basildon, completed the Chelmsford Marathon in 3hr 44min, whilst friends Tony Bridger, Gordon Biggs and David Finch cycled from London to Brighton, between them raising over £2,400. Thrilling fundraiser: Beaconsfield’s Daisy Tarrant took a high-altitude dive in loving memory of her granddad Bob Sawyer. She also organised a car boot sale with family and friends and has raised nearly £1,500. Sweet success: Melissa Hayes from Leicester organised a bakeit! in memory of her dad Mick Porter and raised £1,067 for our work. Brotherly love: Ryan Willmott and brothers Ash and Aaron, from Surrey pulled together a team of over 60 runners to take part in the Windsor Half Marathon in memory of their mum Brenda. The team raised just under £9,000. 36 thumb print Winter 2015 Drop in: Tea, coffee, sausage rolls and cakes guarantee smiles all round at South West Surrey Branch’s monthly drop in for people with MND and their carers. Record turnout: Mike Findley MBE and a huge team of supporters from Cleveland held their annual Walk to d’feet* and recorded the largest turnout in 10 years! Over 100 walkers of all ages attended, including these young supporters. *Walk to d’feet is a Trademark of The ALS Association and is used with permission. All rights reserved. down your way Wild ride: Gamekeeper Chris Wild from Skipton and his friend Mike Hemmingway were inspired by this year’s Tour de France Grand Départ to cycle an epic 300 miles over three days. Chris has been fundraising since his father, Ted, was diagnosed with MND and raised over £2,000 through this challenge. No obstacle to fundraising: Claire Taylor from Dunmow, Essex and her partner Jay tackled an obstacle course in memory of her dad David Smith and raised £400. Claire said: “I know my dad would have been with us, laughing at us especially at Jay, knowing how much he hates getting wet and muddy.” No distance too far to fundraise: Rebecca Thomas travelled from Australia to climb Mount Kilimanjaro in memory of her friend’s much-loved father, Robert Gillam. Rebecca said: “After watching one of my best friends walk down the aisle with her dad who suffers from this horrific disease, I promised myself I would do something every year to raise money for the Association.” She has stayed true to her word and raised $3,000 Australian dollars. Next she’s taking on the Australian Outback Marathon. Rebecca, is left in picture with her friend Paula Graham. Fun and friendship: Michelle Thorpe from Hull held a coffee morning in honour of her best friend Gillian’s mother, Susan Schofield, who has MND. Michelle has known Gillian for over 20 years. The event raised £241 for the Hull and East Yorkshire Group. San Francisco running: Matt Crosse took part in the San Francisco Marathon – taking in the Golden Gate Bridge and a tour of Golden Gate Park – and finish 42nd out of 6,626 runners! He raised £1,247 for the Portsmouth and South East Hampshire Group, where his proud parents Peter and Gill are long-serving volunteers. Strong as iron: Cathy Haynes, from London took on the Ironman 70.3 mile triathlon in memory of her dad Mike Burns. She later found out she had been invited to represent the UK in her age group for the next challenge in Canada. Cathy has raised around £16,000 for her dad’s Tribute Fund. Fair awareness: South West Surrey Branch took part in the Annual Combined Christmas Charities Fair at the Guildhall in Guildford. Branch members Alvin Hale, John Haywood, and Bob Hodgson are pictured with The Mayor of Guildford. Caring colleagues: Chris Kett and his team from the Pharmacy Department of Norfolk and Norwich Hospital have held two charity nights and one of the team took part in the London Marathon in memory of their colleague Karen Williamson. They have raised around £5,000 and are planning more events. Sporting a great cause: Dame Sarah Storey, Britain’s most successful female Paralympian was star guest at Red Card for MND, a Sports Dinner and Auction organised by Chris Maple in Salisbury. The evening raised £7,000, including generous donations from Dame Sarah and Simplyhealth. It was also a great awareness raising event. thumb print Winter 2015 37 your voice diary dates Silverstone Half Marathon 15 March Brighton Chicken Run 29 March Brighton Marathon 12 April Great Manchester Run 10K 10 May Superhero Run 17 May Edinburgh Marathon 31 May Nightrider 6-7 June Grand Union Challenge 27-29 June British 10K London Run 12 July Tough Mudder Various dates April-October Bakeit! All year round Walk to d’feet* MND All year round Regional conferences Reading: 1 February North West: 19 April North East: 19 July South West: 25 October Choir’s chilly challenge A literary legacy November marked 15 years since my mum died after living with MND for 10 years. When the Ice Bucket Challenge was in full swing, I posted on Facebook about MND and the awareness and fundraising campaign. One post mentioned that my mum’s birthday was coming up. A friend from a choir I belong to suggested that, in memory of my mum, we should do the challenge. I didn’t really have any choice but to agree to put my money where my mouth is, so my husband and I and members of Bexleyheath Rock Choir gathered at the Royal Standard pub in Belvedere. They kindly agreed to provide the venue and the ice. Some of us volunteered to be ‘iced’ and others watched, took photos and donated. In total, after adding the results of a collection at our choir rehearsal, we raised £250 for the Association. We also had a terrific evening and my husband now has great admiration for our choir leader’s ability to organise us all! Elaine Coates, Sittingbourne When Alice Chambers, who had MND, went into hospital to have a feeding tube fitted her friend Ma White brought her a bear called Henry. However, when Alice, from Balemena, County Antrim returned home from hospital the bear was lost. A search took place and the 68-year-old and her family were inspired to write a book ‘The Adventures of Henry’ as a way of raising money for the Association. The book was published just four days after Alice passed away in October. Her daughter Deborah said: “The book was very much a positive thing for both my mum and our family to work on when life was getting difficult.” If you are interested in buying The Adventures of Henry email [email protected] The book costs £3.50 plus postage and packaging, all of which is being donated to the Association. Follow us @mndassoc Talking about #MND on Twitter get involved: telephone: 01604 250505 website: www.mndassociation.org email: [email protected] We would love to hear from you If your letter is printed on these pages we will send you an MND Association coin keyring. Please provide your full address with your letter (this will not be printed). Write to: Your Voice, Thumb Print, PO Box 246, Northampton NN1 2PR or [email protected] *Walk to d’feet is a Trademark of The ALS Association and is used with permission. All rights reserved. 38 thumb print Winter 2015 Nicola McIntosh @MrsNLMac Remembering one of my old school gang today, Keith Hallway who battled #MND so bravely. Pls support @mndassoc for a world free from mnd. x Cycling For Bryan @Cycling4Bryan On 3rd May ’15 friends & family will cycle over 1,000 miles from John O’Groats to Land’s End raising money & awareness 4 @mndassoc. Jordan Newell @jordannewell Well done to @mndassoc for raising communication support for people with MND in Parliament this week. Look forward to seeing inquiry report. Lizzie @theEEBster Today @forstergolfpro reached his £3000 target for the London Marathon. He is out training now. I’m so proud of him & his stepdad’s memory. Tracy Skinner @tr4cyskinner Next year I’ll be 40! Rather than celebrate by consuming copious amounts of alcohol I’ll complete 40 sporting events in aid of @mndassoc. your voice Fading away about us: Lynda Hatcher from Brentwood, Essex, wrote this poem about her dearly-loved husband Ian who was diagnosed with MND two years ago and passed away in November. A poem for dad I am watching my husband slowly fade away Soon there will be nothing that he can say Sophie McCarthy, 24, from the Forest of Dean was inspired to write this poem for her father Dennis, who was diagnosed in 2013. She wrote: “My father has led a full and active life. He is now retired and enjoying his time taking regular holidays. MND has not stopped him in any way and he still leads his healthy, active lifestyle.” 24 hours in a recliner chair How much more is there for him to bear ? Motor Neurone Disease is so cruel, It will drain away all of your fuel. Motor Neurone Disease is unforgiving, And can make you feel like it’s not worth living. Motor Neurone Disease has no soul, But please don’t feel like you’re in a hole. Motor Neurone Disease robs your independence, But please don’t let this be a life sentence. Motor Neurone Disease makes you cough and wheeze, I wish this was something I could ease. 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. Beautiful grandchildren of 3 and 5 Thoughts of them helping keep him alive Hard for friends and family who show they care Harder still for the man who just sits there Happiness and laughter throughout 45 years Then 24 months of anguish and tears Doctors, nurses and equipment galore I never imagined would come through OUR door Website www.mndassociation.org Two wonderful daughters we know we have How must they feel about their darling dad Social media How do you cope I hear people say Sometimes it’s hard to keep smiling each day Online forum A place for people affected by MND to share experiences and support each other. http://forum.mndassociation.org But I know that he would do the same for me Where did it come from this MND? Facebook www.facebook.com/ mndassociation Motor Neurone Disease takes the sun, But you are warm, you have won. Twitter @mndassoc Even though you cannot eat, You will never sit back and accept defeat. You may have lost your voice, But you can feel, you can think and you still have a choice. MND Connect Our MND Connect helpline offers advice, practical and emotional support and directing to other services and agencies. I cannot take away your pain, But please don’t feel like you have to live in the rain. So don’t be sad and down about life, Please don’t struggle and live in strife. Life is for living and with your time left, Please don’t despair, and be angry over this theft. What I’m trying to say is live each day as your last, And please for the rest of your life have a blast. For now I live through you you’re happy and you’re sad, But remember this I will love you for always your ever loving daughter. Open Monday to Friday 9am to 5pm and 7pm to 10.30pm. Humbling experience I thought I’d share this photograph of me meeting Professor Stephen Hawking. He was on the Royal Caribbean Independence of the Seas Cruise Ship at the same time as me in October. I was then on a mission to meet this gentleman and what an awe-inspiring man he is. It was an honour to meet him. I felt very humbled. Ruth Johnson, Vice Chair, Leicestershire and Rutland Branch Membership To receive a regular copy of Thumb Print, call 01604 611855 or email membership@ mndassociation.org thumb print Winter 2015 39 JOIN THE CONVERSATION Smartbox create communication solutions for people living with Motor Neurone Disease. Our equipment provides many ways to stay in touch with family and friends using email, SMS, Facebook and more. USEFUL APPS FAST SPEECH GENERATION Built in apps include word processor, calculator and media player. SOCIAL MEDIA Message banking and a sophisticated word prediction system that learns as you use it. Easy to use grids for Facebook, Twitter, Skype and YouTube are included. SIMPLIFIED EMAIL & SMS MUSIC, PHOTOS & VIDEO Simple grids to keep in touch with family and friends. Listen to music, browse your photos and watch videos from your device. ENVIRONMENT CONTROL Take control of your television, lights, telephone and other equipment around the home. * Device shown is SB10 Mounted with Tobii Eye gaze ACCESS OPTIONS Our devices can be used by people with varying levels of physical movement. From touch screens to eye gaze, we have access technology to suit your needs. WORK WITH US Our team of experienced staff cover the whole of the UK and Ireland. We will come and visit you for free and bring along a range of equipment from a range of manufactures. Smart House, 4a Court Road, Malvern, Worcestershire, WR14 3BL T: 01684 578868 F: 01684 897753 E: [email protected] W: www.smartboxat.com CONTAC TO BOO T US ASSESS K AN MENT
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