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Target MD Issue 1 of 4 2014

2013 Kite Award and President’s Award winners

Meet the Macfarlanes

Special feature

Our work in Scotland Campaigning news

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Research updates

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Fundraising events

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Best of the web

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Trailblazers


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Welcome

I am writing in January at a time when large parts of the country are slowly emerging from flooding following what seems weeks of very heavy rain. I do hope that when you are reading this we are enjoying better weather and, most importantly, making further progress in the fight against muscle-wasting conditions. In this issue we turn the spotlight on Scotland and in future issues you will find us taking a closer look at Wales and Northern Ireland, as well as England, underlining our links with people and communities coming together across the country to back our work in research and improving healthcare as well as enabling people with muscle-wasting conditions to live full and independent lives. We are maintaining our focus on accelerating progress through research towards effective treatments and access to specialist care. We are seeing encouraging developments in research, not least the growing number of clinical trials underway. We are aware of more than 100 trials currently taking place around the world involving patients with at least eight of the different muscle-wasting conditions we cover, and of some promising drugs in the final stages of trials for a number of conditions including Duchenne muscular dystrophy. Clinical trials are an essential step in testing potential treatments to ensure they are safe and effective when used by patients. However, we do have to bear in mind that over many years a relatively low proportion of potential treatments have actually moved through trials, been approved and then reached patients. We understand the regulatory process has to be rigorous; criteria need to be met for safety and clinical effectiveness, and the process also has to be demonstrably consistent. All applications need to be treated objectively and without any suggestion that one company has been treated more favourably than another. On the subject of access to specialist healthcare, we have warmly welcomed the decision of NICE to develop a Clinical Guideline for rare neuromuscular conditions. When I put our case to Sir Andrew Dillon, NICE’s Chief Executive, in October I thought then he understood the urgent need for national clinical standards to ensure the provision of high quality care. We were delighted to learn in December that a Clinical Guideline would be developed, which will lead to much-needed improvements in healthcare being introduced. As health is a devolved service, we will work to ensure a consistent approach is adopted in each of the four countries of the UK. All of this means we must continue our efforts in raising vital funds for research, care and personal support. We are fortunate to have so many determined, committed supporters right across the country who, like us, will not rest until significant progress has been made for people living with muscle-wasting conditions. Many thanks for your support.

Robert Meadowcroft Chief Executive


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Contents Features

News

Regular

Our work in Scotland

24 Clinical neuromuscular guidelines

06 Letters

08 Family hopeful

24 Neuromuscular Forums

20 Fundraising events

11 The Kirkcaldy Whistler

22 News

12 Biking in the Highlands

24 Call for urgent improvements to wheelchair services

14 Fundraising on the Tay

24 New research funding

28 Uniting for Powerchair Football

16 Vital SMA research in Edinburgh

24 Research news

30 Best of the web

17 Change in Scotland

25 Scotland hospice and respite provision

18 Eilean just does it

25 UK rare disease strategy launched

20 Meet Stephen Banham

26 Advocacy updates

25 Call for service investment in Wales

22 That random summer’s day run

25 Muscle Groups across the UK

28 Q&A with a Paralympian

25 Trailblazers news

On the cover Eilidh and Niamh Macfarlane


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About us The Muscular Dystrophy Campaign is the leading UK charity focusing on muscular dystrophy and related neuromuscular conditions. We are dedicated to finding treatments and cures and improving the lives of the 70,000 adults and children affected by the conditions.

We focus on funding world-class research, providing practical information, advice and support, campaigning to bring about change and raise awareness, awarding grants towards the cost of specialist equipment and providing specialist education and development for health professionals.

Interact with us and around 11,500 fans on our Facebook page at: www.facebook.com/ musculardystrophycampaign

Join 6,800 others and follow us for regular updates on all areas of our work @TargetMD

The magazine for supporters of the Muscular Dystrophy Campaign, written and produced entirely in-house.

Advertising enquiries: Richard Walters e: Richard.walters@cpl.co.uk t: 01223 477 428

Editor Ruth Martin Art director Amanda Nee targetmd@muscular-dystrophy.org

Disclaimer

Muscular Dystrophy Campaign 61A Great Suffolk Street London SE1 0BU t: 020 7803 4800 e: info@muscular-dystrophy.org w: www.muscular-dystrophy.org

While every effort has been made to ensure the information contained within TargetMD is accurate, Muscular Dystrophy Campaign accepts no responsibility or liability where errors or omissions are made. The Muscular Dystrophy Campaign does not necessarily endorse the products advertised and no responsibility can be accepted for claims made by the advertisers. The views expressed in this magazine are not necessarily those of the charity. ISSN 1663-4538

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445 Target MD is printed by Pureprint Group using their pureprint environmental print technology, a guarenteed, low carbon, low waste, independently audited process that reduces the environmental impact of the printing process. Pureprint Group is certificated to Environmental Management System, ISO 14001 and registered to EMAS, the Eco Management and Audit Scheme. Enclosed into a bio-degradeable polybag

Hello, Welcome to the first edition of Target MD for 2014. On behalf of the magazine team here, I’d like to wish you an excellent, successful and rewarding year ahead. This edition has a distinctly Scottish focus and we introduce you to just some of the people doing outstanding work in Scotland for the charity. You’ll meet the new Chair of the Scottish Council, longstanding Branch members, a leading researcher, a clinician, new ambassadors and sporting greats, a Member of the Scottish Parliament, and a sporty family up in the northwest Highlands. You’ll also meet Hope, a six-year-old Labradoodle! There’s also news of campaigns and Trailblazer activities in Scotland, including our new, exclusively Scottish mentoring programme, the Link Up project. As always, we bring you more evidence of our campaigning, advocacy and fundraising successes across the UK and the usual round-up from the Wheelchair Football Association. The first-ever Powerchair Football Week that we and the WFA ran at the end of last year attracted much attention across the country and brought in new players, teams and clubs. Do take a look at our fundraising pages to find out what fundraising events are on offer, and we’d encourage you to join #TeamOrange – our events team will offer you the best advice, tips and support every step of the way of your fundraising challenge event. Thank you to all of you who fundraise for us, take part in fundraising events or volunteer for us in any way. We depend upon the support of people like you to fight muscle-wasting conditions. Do let me know if you have any thoughts or comments about the magazine, or any ideas for the next edition, which will focus on our work in Wales. We always want to bring you the news and stories you want to read. I’d love to hear from you.

Ruth Martin Editor t: 020 7803 4836 e: r.martin@muscular-dystrophy.org tw: @RuthWriter


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Letters What do you think? We’d love to hear from you and to fill this page with your letters. Send us your good news, your frustrations, your story ideas, as well as any news you’d like to share with our readers. Dear TargetMD, We have two boys with Duchenne muscular dystrophy – Tom, aged 8, and 10-month-old Benjamin. We’ve spent the last few years working overseas and returned to the UK earlier this year. We found a great school for Tom with a really inclusive ethos and dedicated staff. He was immediately provided with 1:1 support as he’d had overseas for the past few years. With the support of the school we requested a statutory assessment and were disappointed and surprised when the local authority declined to issue an Education, Health and Care (EHC) plan on the basis that the school could provide for him from within existing resources and top-up funding from the high needs panel. We discussed this with the school who were equally surprised with the outcome. We felt we needed further advice and so contacted the charity’s information and advocacy service, and they provided some really helpful, clear and unbiased advice and provided us with a detailed letter of support that made clear that we were determined to ensure our son had the protections he is legally entitled to, whilst taking a constructive approach to the issue. We arranged a meeting with the local authority and school and made considerable use of the letter in making a case to reverse the decision. When it came to hand the letter over we were informed that it would not be necessary as an EHC plan would now be issued. There’s no doubt that the excellent support we had from the charity was a major part of our success without needing to go through the stress and time of a Tribunal hearing. Simon, Ruth, Tom, and Benjamin Dadd, Northamptonshire

Looking ahead The next edition of Target MD, due out in April 2014, will focus on Wales. We will look at the charity’s services and activities in Wales (and in issues 3 and 4, Northern Ireland and England) and introduce you to some of the outstanding families that we work with there. If you have a story you’d like to share with our readers, or any suggestions for stories, please do get in touch with us. As always, we’ll also feature our latest news, features and updates that keep our supporters in the spotlight. People with neuromuscular conditions, together with their families and carers, are at the heart of everything we do.

Hello there, The Muscular Dystrophy Campaign’s advocacy service has been of great use to me personally as I embarked on a benefits claim journey. The help with the completion of my form was exemplary and I hope to hear from the Benefits Office in the New Year. The advocacy ambassador appointed to help me has been a star and her timely contacts and further advice has been very helpful. Her dedication was the reason for me applying to join the [advocacy ambassador] team. My very best wishes to all in the team.

Alexandra Pawley-Kean, Berkshire To find out more about the charity’s Advocacy Ambassador programme, how to access the service or how to join, go to p26 where you’ll find more information and some contact details.

Here’s how you can get in touch with us The Editor Muscular Dystrophy Campaign 61A Great Suffolk Street London SE1 0BU t: 020 7803 4836 e: targetmd@muscular-dystrophy.org tw: @TargetMD or @RuthWriter


Jenny Fradgley

Jackie Simkins

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Feature

Hope comes through everything Sheonad Macfarlane says. The specialist doctor, mother of two and new Chair of the Scottish Council uses the word ‘hope’ liberally as she shares her family’s story of living with a neuromuscular condition.

n Eilidh’s condition Spinal muscular atrophy (SMA) Spinal muscular atrophy (SMA) is a condition which affects nerve cells in the spinal cord, compromising the link between the brain and muscles required for movement and in some cases, breathing. Babies born with the most severe type of SMA rarely survive past eighteen months old, while children diagnosed with other types may be unable to walk or may experience difficulty with walking, negotiating stairs and balance. Respiratory issues are a common and dangerous problem for those affected.


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Sheonad describes herself as a ‘hopeful mummy’ and her family as ‘ever hopeful’. When her four-year-old daughter, Eilidh, was diagnosed with spinal muscular atrophy (SMA) type 2 in 2010 at the age of 15 months, Sheonad and husband, David, needed to find a sense of peace and hope. They found that in the comfort of friends, in the information and support they received from the Muscular Dystrophy Campaign, and in the support of a compassionate and knowledgeable neuromuscular care advisor. Sheonad grew up on a farm in East Lothian with her younger brother, Alan, their dentist dad and mum who is now PA to a rock star. Sheonad went to North Berwick High School, and, after deciding between agriculture and medicine, went on to study medicine at the University of Aberdeen. After doing placements in Inverness and Stirling, travelling to New Zealand and Australia and completing a year’s GP training in Govanhill in Glasgow, Sheonad became a partner in a practice in Ayr before joining Marie Curie Cancer Care as a specialist doctor in 2011. Sheonad loves her work. When she moved to Glasgow in 2002, Sheonad met David, an IT architect, and they married in 2005. Niamh was born in 2007, and Eilidh in 2009. Sheonad noticed something different in Eilidh’s development: she had started crawling and then stopped, she wasn’t bearing weight when she was held up, and when she waved at people her arm would drift down. “I took Eilidh to see a neurologist. He thought she could have lower limb weakness because she was born breech, and wanted to see us again in three months. When we went back, he said we should investigate muscular dystrophy or SMA. Neither of those conditions had crossed my mind; I was in floods of tears as I knew what that meant. David had no idea. “I remember instant grief; I felt as though my heart had fractured. Our lives had been shattered but we still did not know what we were facing; we were in a state of shock and disbelief. We heard a few days later that it wasn’t muscular dystrophy and had to wait another week for the genetic results. “We went into the hospital to get the news that Eilidh had SMA type 2; the news was given quickly, without any warning. “For me, there was despair, anger, disbelief and tears. I couldn’t reach out to tell our friends but I needed to, so I emailed them – it was the only thing I could do. Their responses were beautifully and sensitively considered and not only helped me to cope, but gave me hope. I needed to share my story, so I started my blog (Touch and tickle, by the ever hopeful mummy); it’s been very cathartic.” At this point, Sheonad paused. “It is amazing to look back and see how far we have come. Time really does heal.” At the point of diagnosis, Sheonad needed comfort and a sense of peace, while David wanted information and support. Wilma Stewart, the regional care advisor for Glasgow, who had been with them when they received the diagnosis, gave them both. Through Wilma, Sheonad and David connected with the charity

straight away, and went to the Scottish Conference five months later. “We only managed half a day, as it was really difficult for us, but it was good to feel part of something much bigger than just us,” said Sheonad. “When we went to the next year’s conference, we got the growing sense we wanted to be involved. It was so inspiring to hear about everything the charity was doing. By 2012, the Trailblazers had caught my eye and I decided I wanted to do more and got involved on the Scottish Council. After a year as a council member, I was elected chair in October 2013. I look forward to bringing my personal and professional experience to the role, and I do get a sense of hope and support and encouragement from everybody else. “I want more people to know about neuromuscular conditions, to increase awareness in the general public and in health care professionals, and I’d like to grow a community of support to make our voice – those living day to day with neuromuscular conditions – louder and stronger.

We represent people living with “neuromuscular conditions in Scotland

so we need to be relevant and aware of the issues affecting all of us.

“The immediate work of the Scottish Council involves addressing the issue of neuromuscular care advisors in the north; access to and funding of treatment for rare diseases, and the provision of respite for young adults living longer with neuromuscular diseases. I am just finding my feet, and with the support of everyone at the charity and council members, I feel we can move forward and make a real difference.” When I asked Sheonad what she’d say to a family going through a similar diagnosis, she said nobody can ease the heartbreak you feel. “No-one will understand the emotions you experience; they just can’t, they are too enormous and raw. Of course you will ask ‘why us?’ but there really is no answer. Life will be different, that is certain, but it will be full of love and laughter and you will see the joy in your child: your child will teach you about living with a neuromuscular condition. You will be their advocate through life, and you will nurture them to reach their full potential because, ultimately, they are your child and you love them, no matter what.” Niamh is in primary two and Eilidh in primary one at their local school, which is completely geared for Snappy the Snapdragon, Eilidh’s powerchair. Eilidh, who says her ‘muscles don’t work’, has been taught how to cope with Snappy ‘without squashing or running over other children’. Her bubbly personality and strong spirit have given her the nickname ‘Gallus Alice’. Niamh is a very caring, happy and ‘sometimes bossy’ but always loving older sister. “On those days when life feels hard, it helps that we are a loving, fun family that is mad as a box of frogs and ever hopeful.”


The new Avantgarde3 Living ahead!

31 year old Nina is a model, mother, wife and rugby player. She lives her dreams and enjoys life to the full. When posing before the camera Nina emits passion, beauty and radiance that even her wheelchair cannot distract – quite the reverse!

© Ottobock UK/ADV/MOB/0378

‘I would like to make a difference and hope my actions inspire others with a similar disability, to have the courage to live their dreams’. Following a car accident that changed her life leaving her a quadriplegic, with the assistance and support of family and friends Nina energetically fought her way to regain her old (new) life back. ‘Most important is a healthy self being and feeling of value, whether disabled or not. I have learned to live with change and have become extremely disciplined’ states Nina. ‘Obviously my family and modeling career keep me extremely busy, however, during 2008 I commenced a new hobby and actively and enthusiastically play wheelchair rugby defense for the Maple Panthers. Rugby is like playing chess, only more complicated since the figures move considerably faster!’ Ottobock

0845 600 7664 · www.ottobock.co.uk


The Kirkcaldy Whistler

Referee photo: technotr/istock

Spending a lunch hour with John Rowbotham in his beautiful home town of Kirkcaldy, you soon realise that sitting still is not something he does often. Not only does this retired international football referee work full-time, but he has a demanding part-time job as an after-dinner speaker, has four grandchildren and supports his local football club. In addition to all of that, he’s found time to take on the role of charity ambassador in honour of his late younger brother, Russell, who had muscular dystrophy. The oldest of three brothers, John was born in Kirkcaldy. His dad, Peter, worked as a policeman, and the family – with mum, Catherine and brothers, David and Russell – moved around a lot in the Fife region. “When Russell was a little boy, he was slow to start walking, and had a strange style of walking. I have some strong memories of him really struggling and often falling over. When he was about seven, he had a number of tests and was diagnosed with muscular dystrophy. We didn’t know much about the condition in those days, and we didn’t know there were different types of muscular dystrophy, so never asked anything further. “Russell went into a wheelchair when he was ten, and sadly died in January 1979 at the age of 15,” John said. “My parents had had to do so much for Russell: all the lifting, fetching him anything he needed, in and out of the wheelchair. They might have been given some indication of Russell’s life-expectancy, but I am sure they could never really be prepared for the loss of their youngest son.” As a young man, John played football in the local amateur league. After his team had won a few trophies, he decided – at 29 – to give up playing and take up refereeing as a hobby. He had no huge aspirations but soon moved from junior reffing to being nominated by the SFA to become an international UEFA and FIFA ref. In December 1995, John was accepted to referee in Europe. His first outing was with the Scotland U17 team to Portugal, and the first match he officiated was Portugal v Iceland. “I was nervous and excited, and felt the pressure on me,” John said. And so began an international career that lasted six years, took John away on 41 trips all over Europe and earned him the moniker ‘Kirkcaldy Whistler’. He was, however, still holding down a full-time job making sweets, and not only had to take time off work for these international matches, but he also had to train five days a week after

work to keep his fitness at the level required of an international football referee. “Although football refereeing was getting more professional in its approach, I was still not able to give up work.

I had the privilege of reffing some amazing “matches both locally and abroad – acting as fourth ref in an AC Milan/Paris St Germain clash, and reffing four qualifying games in the lead-up to the 1998 World Cup.

John is grateful to have had the support of his wife, Ellen, whom he met at a local disco in 1974. Ellen kept things going at home, raising their two sons Ross and Grant, and helping John to maintain his busy work and training schedule. John now works as a sales representative for a local wholesaler in Kirkcaldy, and his part-time job as an after-dinner speaker takes him to about 30 to 40 dinners a year. “I’m asked to talk about what they say happens on the park, but it really doesn’t! I often get more nervous at huge dinner events than I did as a ref. The difference is that all eyes are on me, and as a ref, the only time eyes are on me is when I blow my whistle,” John said. Along with supporting his local football club, Raith Rovers, being a devoted grandfather to Jodie, Erin, Ben and Lucy, participating in our annual Question of Support quizzes, making the odd guest appearance in local theatre productions and now becoming a charity ambassador, the Kirkcaldy Whistler is clearly staying ahead of the game. John’s parents, Catherine and Peter Rowbotham, continue to support the Muscular Dystrophy Campaign, and when they celebrate their diamond wedding in December, they have asked their friends to make donations to the charity in lieu of gifts.

It was kind of surreal, and “amazing, to think that a wee

boy from Kirkcaldy was out there


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Feature

The Bisset family lives in Muir of Ord in Ross-shire, Inverness. Meet this extraordinarily active family who talk about life in the far northwest highlands of Scotland, their own family business, their sporting interests and achievements and life with Becker muscular dystrophy.

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an and Anne both grew up in Aberdeenshire and both share an interest in cycling; add to that list running, swimming, triathlons and motorcycling for Ian, and horse-riding, cooking and animals for Anne. On top of that they run a family business in welding fabrication and keep up with three active and busy sons: Euan (23), Andrew (19) and James (14). Euan and James both have Becker muscular dystrophy. All three sons were born in Inverness and went to Marybank Primary School followed by Dingwall Academy, where James is currently in third year. After school, Euan and Andrew completed qualifications in welding and fabrication, and are now both employed in the family business and completing modern apprenticeships. Unlike his older brothers, however, James would like to work in a zoo. Euan, a downhill mountain-biking champion, learnt to cycle on two wheels when he was three, and at 13 he started to do stunts and jumps on an old bike. In their early teens, Euan and Andrew began competing in club championships on trials motorcycles. Both boys won several trophies at the trials and in 2009 they both moved over to Enduros. At this stage, Euan found that his body could not sustain the high level of exertion

required for the necessary three-and-a-half to five hour rides. After entering three events and doing extremely well, Euan tried cross-country mountain biking, which was not much better. He then turned to downhill mountain-biking, which entails 35 minutes of pushing and carrying a bike to the top of steep tracks, up to four times in one session followed by the reward

Biking in the Highlands


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of one-and-a-half to four minutes of high-speed downhill riding. Although a very short time, it is really physically demanding for anyone, let alone someone with a disability. Euan struggles sometimes with sustained pedalling and trying to maintain a grip on the handlebars, but he trains hard to compensate for this. In addition to training over weekends, and during the week on light evenings, he does push-ups, pull-ups and swims; uses an exercise bike or turbo trainer, and uses spring grips. Sometimes he has to rest because of pains that just appear of their own accord or, of course, from injuries caused by crashing. He has competed in Scottish and British National Level Downhill Mountain-biking since 2011 and has achieved 27th placed senior rider at a Scottish event, and 54th at a British event. In 2014, his goal is to achieve a top 20 position in at least one race. James, who describes himself as a ‘bit’ shy, quiet and kind, enjoys playing on his Xbox, his remote control car, cooking and horse-riding. James has also taken part in club championship events in trials motorcycling and won two trophies. He enjoys riding his trials motorcycle at home, but, as he has extreme fatigue all the time, he finds it very demanding on his legs and arms and can only ride for a short time before resting. His ambition is to take part in a motorcycle competition like his dad and brother, Andrew (who also enjoys trials cycling, running, paintball and remote control cars). When James was little, Anne and Ian had noticed he could not climb the steps at school nor run about quite like his peers. They mentioned their concerns to a community paediatrician and she arranged testing after which James, aged seven, was diagnosed with Becker muscular dystrophy. Euan, who as a child had struggled with cycling and walking and always complained of sore legs/muscles, received a similar diagnosis in 2009 at the age of 18. After an ECG and an echo cardiogram, he was also referred to a cardiologist and immediately began medication. “On diagnosis, Ian and I felt relieved that there was an acknowledgement of things we knew weren’t right and that we weren’t imagining the problems. We were also very relieved that Euan’s cardiac changes had been detected, as these probably

would have gone unchecked,” Anne said. The family enjoys the local support of the community paediatrician, a physiotherapist, an occupational therapist and support with orthotics and cardiology for James but there is no ongoing support available for Euan, apart from his cardiologist. “Soon after James’ diagnosis, we found the Muscular Dystrophy Campaign website and this provided a lot of information and support for us. In June 2013, we learnt of the Becker muscular dystrophy Information Day in Daventry but after much thought we knew the 1,000-mile round trip would be too far and too tiring for the boys. “We decided for the first time, however, to make the four-hour trip to Glasgow for the Muscular Dystrophy Campaign’s annual Scottish Conference last year and were very pleased we did. We met lots of really supportive, knowledgeable and genuinely interested people and would highly recommend the annual conference to anyone.

another family receiving a similar diagnosis, “weForwould encourage them to get in touch with the Muscular Dystrophy Campaign as there is a lot of information about the condition on the website.

“We have found that we need to provide information to the professionals looking after the boys as they may never come across someone with this condition in their entire career,” Anne said. Euan says the uncertainty about what the future holds is the worst thing about having Becker muscular dystrophy. “If I met someone else who’d just been diagnosed with Becker muscular dystrophy, I’d say it doesn’t change anything other than the condition being monitored and controlled as much as possible to allow you to reach your full potential,” Euan said. For James, the worst thing about his condition is not being able to do as much as everyone else. “Sometimes I feel sad about having Becker muscular dystrophy, and would like not to have it. If I met someone else with the same condition, I’d tell him to keep trying all the things he wants to do,” James said.

n Euan’s and James’ condition Becker muscular dystrophy

Euan

Landscape photo: Sjo/istock

James sometimes “I feelAlthough helpless, having the condition makes me more determined to succeed.

Becker muscular dystrophy is a genetic muscle-wasting condition, which causes muscles to weaken and waste over time leading to increasing disability. It almost always affects boys and men. Over 2,400 people in the UK are thought to have Becker muscular dystrophy, which is caused when the body’s ability to produce a fully-functioning version of a vital muscle protein called dystrophin is compromised. Several members of a family across generations can be affected. The severity of the condition varies.


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Stuart and Hope, his Canine Partner assistance dog.


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Fundraising on the Tay Drew, Mary and Stuart Turnbull live in Perth, where they are members of the Perth Branch that fundraises for the Muscular Dystrophy Campaign in the Tayside area. This is one of two fundraising branches Scotland; the other is the Lanarkshire Branch, ably led by long-term supporter, Jim O’Hagan. Drew shares with Target MD readers how he and Mary first became involved with the charity over 30 years ago: Stuart is 37 and has a degree in computer science from Perth College. He was diagnosed with Duchenne muscular dystrophy when he was six years old. We had noticed, from the age of three, that Stuart’s walking was not quite right and only when he was six did a physiotherapist point out that he needed to be tested. We really had no idea what the diagnosis meant, and it was difficult to find out any information. It was a need to connect with other families going through a similar diagnosis that attracted my attention to a story about someone doing a sponsored run for the Muscular Dystrophy Campaign. I sent off a cheque with a note, and that was the beginning of our involvement with the Perth fundraising branch that has lasted for the past 30 years. Our branch used to be much more active in our fundraising efforts back then, when we weren’t competing with so many other charities for local support. Our annual fundraising event used to be one of the first of only a few fairs held in the very spacious Perth City Hall. Looking back, it was quite ambitious of us to take this on; there were only a handful of us involved, we put some leaflets through the doors around our neighbourhoods and on the day, there were queues right down the street waiting to get into the city hall! It really took off and raised considerable funds for the charity. We have also raised funds at silent auctions, car washes and car boot sales in the past and we receive marvellous support from a local charity, the George and Effie Taylor Charitable Trust. Over the years, the ‘fair’ concept started to fade and it became too expensive to run. The branch’s main fundraising event these days is the annual quiz, which is held in one of the local social clubs and is well supported. We are also excited to announce a brand new venture that will be starting in Perth next year: a Spirit of Easter service, which will be a fundraiser but it is hoped that it will also be an opportunity to tell more people about the work of the charity. The chair of the branch is currently Marie Kobine, (with two brothers both affected by facioschapulohumeral (FSH) muscular dystrophy); Margaret Panton, our Treasurer, who has no personal connection to muscular dystrophy at all; Jean Clark, whose granddaughter has congenital muscular dystrophy, and Fiona Wilson, the outgoing secretary of the branch, who has served for many years and also has no personal connection to muscular dystrophy. We meet monthly and support families with grants for home adaptations, help to bridge the gap between statutory funding and the actual cost of adaptations, and award grants for wheelchairs. We also aim to send a reasonable remittance to the Head Office each year for research. It’s not just about the fundraising. I think the branches are important to the families as a support. Our biggest challenge is how to bring new blood into the Branch; we aren’t devoid of ideas, we are just out of touch with the young people who are likely to support us these days. We understand the key to resolving the problem is having someone in the background who has the bright ideas and the right connections.

A dog called Hope There was a time when Stuart felt vulnerable when his family were out of earshot. Now the 37-year-old, who has Duchenne muscular dystrophy, has found a new voice: when he tells Hope to ‘speak’, Hope – the six-yearold “Canine Partner” Labradoodle – barks. When Stuart asks her to, she pulls down his bedclothes, brings him things he needs and she summons help when Stuart needs assistance. Hope bounds up to the front door to greet visitors and gently to give them the once-over. Come anywhere near Stuart, and Hope stands guard between you and him. Hope sleeps in Stuart’s room and sometimes wakes him up, with her paws on his pillow and her nose tickling his face, checking to see if he’s ok and the ventilator is still working as it should. Not only is this caring partner Stuart’s best friend, she’s also his arms, his legs and his protector.

Drew has done some fundraising events himself over the years: he abseiled down the Forth Bridge, he ran the Glasgow Marathon and he has a skydive booked for Make Today Count. Mary has dived with sharks at Deep Sea World near Edinburgh. If you’d like to become involved in fundraising for the Muscular Dystrophy Campaign through your local branch, do get in touch with our Volunteer Fundraising team on 0845 872 9058 or volunteerfundraising@muscular-dystrophy.org


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Feature

Vital SMA research in Edinburgh Professor Thomas Gillingwater, Professor of Neuroanatomy at Edinburgh University, leads a research project funded by the charity. Now in its final year, the project will test if an important but often overlooked type of cell that supports motor neurons contributes to the onset and severity of spinal muscular atrophy. Meet the man behind this important research.

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om (pictured right with his daughter Harriet) was born and raised in Loughborough, and went to Leeds University to study human anatomy. After completing a three-year undergraduate degree, he realised that if he wanted to have an academic or scientific career, human anatomy did not offer him a huge number of research opportunities. Purely by chance, he ended up doing a summer research project in Simon Parson’s lab in Leeds, looking at the connection site between nerve and muscle: the neuromuscular junction. “I’d never had exposure to the neuromuscular junction, and I literally fell in love with it there and then. I chose to do my honours project in this lab, looking at the way these neuromuscular junctions changed during development. It fascinated me how dynamic a system it was and how things changed, especially in the early stages after birth. “This fired my interest to do a PhD and pursue research as a career. That brought me to Edinburgh in 1998 to do my thesis on the degeneration of neuromuscular junctions, principally after injury to nerve and muscle. That was followed by a post-doctoral research project in neuroprotective strategies. After finishing my studies, I took on the job of Lecturer in Human Anatomy, which also brought with it the opportunity to do some research. It was a dream job for me, being able to set up my own research lab to run alongside my teaching responsibilities,” Tom said While at a conference in 2005, Tom met Oxford-based neurologist, Kevin Talbot, who suggested his research could look at the neuromuscular junction – and nerve/

muscle breakdown – in spinal muscular atrophy (SMA). “I had heard of the condition and was aware there were mouse models of the disease but had never thought about focusing on it in research. Kevin asked if I would take a look at neuromuscular junctions in the SMA mouse models he had, and I’ve never looked back,” Tom said. With a lab in the Centre for Integrative Physiology at Edinburgh University, Tom’s research has pushed forward a lot with SMA work, and has taken a much more holistic view of the disease. “From an early specific question on what the process of neuromuscular breakdown is in SMA, we have moved to the much more fundamental questions about the disease and the pathogenesis of the disease.

at the role of the “glialLooking (supporting) cells in SMA, we have some convincing indications that these cells are playing an important role.

“Understanding the basic science is critical in treating the condition, but it also needs to be translated into some kind of therapy. Proteomics – a technique to screen for levels of almost all proteins in a tissue and you can compare levels across healthy and diseased tissue – is a technology we use to do screening of different aspects of the neuromuscular system, using SMA mice. This identifies the pathways that are altered in SMA. That has been incredibly exciting and has enabled us to identify some core pathways that are changed and are targetable with

drugs and therapies. This isn’t a magic pill, but the hope is that it will give some significant benefit. If you start combining therapies, targeting all different bits of the disease, you will find a more beneficial therapy, and add value to the therapeutic approach,” he said. “With no vested interest in one technology, we are open to all the different technologies we can harness and use. And collaboration is key; you can almost never do it alone, and no one lab is sufficient to do all the experiments and technical development you need. We have a supportive and friendly group of research collaborators both here in the UK and abroad.” When asked what ignited his interest in research, Tom said science didn’t run in his family, but his science teacher at school had said he should become a scientist. “I didn’t really know what that meant. I chose to do an undergraduate degree in human anatomy, purely out of personal interest. I still have a huge interest in human anatomy, and in understanding the fabric of what it is to be human. I do a lot of mentoring of young people, students coming through my lab, and I try not to lose sight of the opportunities I was given that ignited my interest in research as a career. I want to pass those opportunities on to them. Science requires incredible tenacity, patience and the willingness to pick yourself up when you get knocked down.” “Something I realised when doing my PhD was that everything we were doing was basic science. It often feels very isolated and you do not see the reality of what you are looking at from the wider perspective of patients and their families;


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Change in Scotland I want my research team to actively engage with the charity and patient communities of the condition we work on. It is so important to understand what is going on in the scientific arena, and it also helps to remind and focus students’ minds and helps them understand why what they are doing is important. “When we have a lab visit, the whole lab is elevated. When someone comes into the lab and takes an interest, and says what you are doing is fantastic, it means such a lot to everyone. It is incredible the response that generates, especially with the younger members of the lab.

can be driven “forReasearchers the next 12 months by that poitive reinforcement and reminder of the relevance of their work.

In 2010 Tom put in a grant application to the charity to address the question of whether glial cells play a role in SMA. “The research is going very well, and we have hit all of our target milestones so far,” Tom said. Tom’s lab has had two papers published recently: a paper on SMA biomarkers in Genome Medicine, and a paper reporting robust, intrinsic defects in Schwann cells in SMA in Human Molecular Genetics. “These exciting findings, that we believe provide important insights into the pathogenesis of SMA, have been generated mainly from the work in our lab funded by the Muscular Dystrophy Campaign,” Tom said. Tom lives in East Lothian with his wife, Lel, and their four-year-old daughter, Harriet. A classical music and opera lover, Tom has also developed a taste for the national drink of Scotland and has joined a small whisky-tasting club. A keen golfer and supporter of Nottingham Forest, Tom is also editor-in-chief of the Journal of Anatomy. If you’d like to find out more about the research that we fund, do visit www.muscular-dystrophy.org/research

When you meet Jackie Baillie, MSP for Dumbarton, and get to hear about her work and her passion – which really seem to be one and the same – you realise she lives by her own mantra: politics should never be dull. Four years ago, Jackie had a visit from Robbie Warner (who lives in her constituency and who was then Chair of the Muscular Dystrophy Campaign’s Scottish Council) and CEO Robert Meadowcroft, who asked her to set up the Cross Party Group (CPG) on Muscular Dystrophy in the Scottish Parliament. Jackie said she thought long and hard about this. “The Scottish Parliament has a huge number of cross party groups, so you need to think carefully before setting one up. We decided to go ahead and in 2009 set up a Group with a campaigning focus, to pursue issues and bring new awareness for services for people with muscular dystrophy and related neuromuscular conditions in Scotland. I believe a campaigning CPG such as this has an important role to play and, if we can influence members of the Scottish Parliament, then we are creating success,” Jackie said. The CPG, which includes representatives from each major party in Scotland, took on its first task in 2010 by launching the first-ever inquiry into specialist neuromuscular care and social care in Scotland. This was followed by the publishing of The Mackie Report, presented at a reception at Holyrood, which found that in addition to the need for additional care advisor posts in Scotland and the alarming reduction in services for patients moving from paediatric to adult care, people in Scotland affected by neuromuscular conditions were receiving a patchy and sometimes non-existent level of service from diagnosis onwards. “This report was useful in engaging the Scottish Government about how to work with the report and with the charity to make necessary change happen. That was one of our early successes and, while there is still much work to do, we try always to be very practical. “The CPG is informed by people affected by muscular dystrophy – and their families and carers – who tell us why it is so essential we secure these changes. There is a truth and there is a reality in what people are telling you that cuts through everything,” Jackie said. The CPG has been influential in helping to access rare disease funds and, more recently, in If we can influence members bringing the Muscular Dystrophy Campaign of the Scottish Parliament, then together with Action Duchenne in a tripartite alliance with Scotland’s Chief Scientific Office we are creating success. (CSO). This partnership will fund a clinical research and training fellowship to specialise in Duchenne muscular dystrophy, a devastating muscle-wasting condition that affects around 200 children and young people in Scotland. Jackie recently met with a group of young men with Duchenne muscular dystrophy who have grown out of the Children’s Hospice Association Scotland (CHAS) services, and are calling on the Scottish Government to work with charities to help create suitable respite facilities to support young disabled adults with life-shortening conditions. Robert Watson, on behalf of the CHAS Young Adult Council, lodged the petition at the Scottish Government. “One of the great things about this group of young men presenting their petition to Parliament in November was that they’d be invited to address a group of MSPs directly and get their issues across. There is something really strong about the democracy underpinning that,” Jackie said. “Before setting up the CPG, I’d never met anyone affected by muscular dystrophy. It is inspirational to be involved with the Group but it also makes me angry when I hear stories about people not getting the services and assistance they need. If we can effect change by drawing in people who know what is happening on the ground, then that is a good thing. “The work of the CPG is about opening doors, and if the government supports our issues, they can help open more doors. It is a challenge, but nothing is impossible if you want it and need it enough,” Jackie said. If you’d like to get involved in the charity’s campaigning work, do get in touch with us on campaigns@muscular-dystrophy.org


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Prolific fundraiser, daredevil, media volunteer and one-time busker, 24-year-old Eilean Stewart has not only abseiled for the charity, but now has her sights set on swimming with sharks. Born and raised in Glasgow, she is also known to put on a bit of a party.

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he fundraising nights my family and I have held in a Scout Hall near our home have been some of the best nights of our lives. Whenever I feel like I don’t have the energy to organise another fundraiser, they give me the push I need to get it done. As they say, ‘There ain’t no party like a Scout Hall Party’,” Eilean said. “My friends also get involved as much as they can. A group of us – we called ourselves the Busketeers – once busked in Glasgow to raise funds for the charity. Other friends took on an abseil with me and some have taken part in running events. My friends and family are so supportive; I feel very lucky to have them beside me.” Eilean was diagnosed with limb girdle muscular dystrophy type 2i when she was 12. “I’d never been good at sports and was always picked last by team captains in PE class. I did take Irish dancing lessons from the age of six but found the classes too tiring and had to give them up. “In my last year of primary school, I tore my calf muscle and had to sit out of PE for six weeks. During that time I became weaker and struggled to do normal tasks, like standing up after sitting on the floor. I started attending a hospital clinic and although muscular dystrophy was mentioned as a possibility, doctors believed I had polymyositis, and I was put on steroids to reduce the inflammation and increase my muscle strength. We were told there was a lot they could do to manage the condition and I would live a relatively normal life, whereas we knew there was no cure for muscular dystrophy. So when we were told the ‘good news’, I remember crying with my mum; I could sense her relief.

“After a year on the medication, however, my weight had rocketed – a common side-effect – but my strength hadn’t improved. I was sent for a muscle biopsy, and was diagnosed with muscular dystrophy and, after genetic testing at the Centre for Life in Newcastle, was diagnosed with limb girdle muscular dystrophy, type 2i. “At the time it was a crushing blow. My mum never let on to me just how scared she was. I think it brought her, my big brother and me closer together. The support from family, friends and neighbours was what I needed to pull me through,” Eilean said. Eilean’s mum was very active in joining online support groups and found the Muscular Dystrophy Campaign through that. At the time, Eilean was still coming to terms with her diagnosis and didn’t want muscular dystrophy to be any more a part of her life than it absolutely had to be. “My mum ran a children’s theatre group and would put on an extra performance of the Christmas Pantomime and would charge admission. After the show, a band would play and our neighbour, Clare, would make enough food to feed an army. This became an annual thing and all the money raised went to the Muscular Dystrophy Campaign. The older I got, the more involved I became. At first I would help my mum organise the Christmas fundraiser, then I’d help at collections and events before I went on to singing at the charity’s Spirit of Christmas concert at Paisley Abbey. Eventually I did an internship with the charity’s Volunteer Fundraising department and even got to visit the offices in London, which was a great experience,” Eilean said.


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n Eilean’s condition Limb girdle muscular dystrophy Limb girdle muscular dystrophy causes muscles, particularly of the shoulders, hips and thighs, to weaken and waste over time leading to increasing disability. It is a genetic condition caused by the body being unable to regulate vital proteins in the muscles, can be diagnosed at any age and varies widely between individuals – even within the same family. In some people the muscles of the heart and lungs are affected, leading to life-threatening health problems.

Shark photo: strmko/istock

After my abseil, the next thing “ I’d love to do is swim with sharks. “ Eilean, who has always considered herself to be a daredevil, assumed that people with limited mobility wouldn’t be able to take part in the more extreme fundraising events. Her diagnosis had knocked her confidence in her early teens but in 2011 she just decided to go for it and do an abseil down the Titan Crane. “I’m glad I did it. It was terrifying, but what a rush of adrenaline! Whenever I feel anxious or scared, I just repeat Nike’s slogan – ‘Just do it’ – in my head and it’s surprising how much it helps. The next thing I’d love to do is swim with sharks.” When Eilean moved into her flat in the west end of Glasgow, she was still walking with confidence but now as a full-time wheelchair user, she finds the flat inadequate to accommodate her chair. And, after breaking her femur at the end of 2012 and the subsequent muscle wasting, she’s been declared unfit to work. Her hope, however, is to build her health back up and go to university in September to study counselling. “It is something I’ve always been interested in and I believe that through my own life experiences, I could offer support to young people, particularly those coming to terms with a new diagnosis,” Eilean said. When asked what she would say to someone newly-diagnosed, Eilean said she’s learnt the importance of being prepared. She’s also learnt that her stubbornness has made life much harder for her than it needed to be. “A few years ago, a friend of mine with limb girdle muscular dystrophy told me how long it took to access services such as housing, social work and occupational therapy and she advised

me to get on these waiting lists as soon as possible. I chose not to listen to her because I didn’t want to believe things could get Eileen and her partner, Greig before the abseil. harder than they were. Now I am living in a flat that isn’t suitable for me and the waiting list for accessible accommodation is very long. After five months on the waiting list to see a social worker, I still don’t have an appointment. I am a firm believer that you are only disabled by your surroundings so I’d say be proactive and plan a few years ahead. If you make your surroundings barrier-free, life will be so much easier in the long run. “Secondly, I would say stay active and do the exercises your physio gives you. They will keep you mobile for so much longer and they really make a difference. I am the world’s worst procrastinator and whenever it came time to do my exercises, I would always manage to find something, anything, else to do. Yes, they can be a pain but they are so important. “Finally, and most importantly, remember that you have muscular dystrophy and not the other way around. Don’t let it stop you from doing anything you want to do. We’re lucky enough to be alive just now when the world is sitting up and paying attention to access and disability. If you’re ever feeling defeated or like you can’t achieve something, try using the Nike slogan. It really works for me,” she said.


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Feature

A challenge for you for us Fancy taking on a challenge this New Year?

meet... Dr Stephen Banham Scottish Council member Can you give Target MD readers a brief outline of where you studied and worked, and what led to your particular specialisation as a Consultant Respiratory Physician? I am English and went to Edinburgh in 1969 to study medicine, and stayed in Scotland ever since. I was interested in respiratory medicine because of new technologies at that time, such as fibre optic bronchoscopy, and I wanted to focus on people with chronic conditions such as asthma and lung cancer. I was appointed consultant at Glasgow Royal Infirmary in 1982 and by 1990 had become interested in the new field of sleep breathing medicine. When did you first come into contact with patients with neuromuscular conditions? It was sleep medicine that brought me into contact with neuromuscular conditions, since the extra physiological stress of breathing while asleep is a clue to possible future respiratory difficulties in neuromuscular patients. From about 1994, I started to try and develop a service with a specialist team – nurses, physiotherapists etc. – and moved the service in 2005 to Gartnavel General Hospital to expand further and link with other hospitals. I retired early, in 2012, and handed over to Dr Scott Davidson at the new Southern General Hospital in Glasgow, which will bring the respiratory service together with paediatrics, genetics and adult neurology. Dr Davidson will hopefully succeed where I failed in getting proper regional funding for the long-term home ventilation service. When did you first become involved with the Muscular Dystrophy Campaign? I got to know families involved with the Lanarkshire Branch of the Muscular Dystrophy Campaign, through patients I was working with, and was honoured they invited me to attend their meetings, from which I gained a wider understanding of the issues facing those with neuromuscular conditions. I was then pleased to assist the charity in their ongoing work with the Scottish Government Cross Party Group for Muscular Dystrophy, in raising awareness and advocating improvements in medical and social care for those affected by neuromuscular conditions so that they can live the best lives possible. In the past few years I have also been a member of the Scottish Council of the Muscular Dystrophy Campaign, and greatly enjoy the lively meetings and annual conference. It is particularly nice to see more and more of the young people, many of whom I have had the privilege to know, taking things forward themselves. In that regard, it has been a pleasure working with Trailblazers in connection with our efforts to produce a respiratory guide to promote safe air travel abroad for people with neuromuscular weakness. (This publication, due to be published in the spring, will be available along with our factsheets on the website.)

We have a whole host of exciting events on offer! You can join #TeamOrange in a variety of ways: why not venture to China and trek for charity, or even get a team together to take part in our golf challenge event – the Four Course Classic? For more information on how to join #TeamOrange and take on one of these challenges in 2014 to help us raise those vital funds, please contact Hayley on 020 7803 4824 or h.gill@muscular-dystrophy.org

Get involved We have a wide range of fundraising events planned for 2014. We’d love you to join in! www.muscular-dystrophy.org/events

Tuning in with Knoxy

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iane Knox-Campbell (pictured with Eoghan Warner), Radio Clyde 1 presenter, came along to support the Muscular Dystrophy Campaign’s Brides Ball at the Grand Central Hotel in Glasgow in September. Diane, or Knoxy as she is affectionately known, has been presenting on Clyde 1 – a radio station she describes as fabulous, with an amazing team – for over three years. Originally from Inverness, Diane worked in radio in the Highlands for six years before moving to Clyde. Here’s what the Brides Ball meant to her. “I loved the idea of a ‘Brides Ball’! Women wear their gorgeous wedding dresses for one day only and then they get shoved up to the loft or in the back of a wardrobe, so to be able to wear them AND raise money for a fantastic charity was a great idea. “I thought the event was fantastic. I met so many inspirational people; in particular, I spoke to an amazing 16-year-old named Connor, who told me about a swimming challenge he completed to raise funds. This was something that was a personal challenge for him, and not an easy task, but he smashed his target and is an incredible inspiration. I also enjoyed meeting the McGuire brothers, and hearing about their experience of competing in the Paralympics was inspirational – they set themselves a target to compete and they let nothing stand in their way. “I wasn’t all that familiar with the Muscular Dystrophy Campaign but it’s definitely a cause I am interested in as a result of the night. The condition affects so many young people, but the determination they show to overcome their personal battles while raising money for a charity they feel passionate about is heart-warming.”


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Run the Virgin Money London Marathon 2014 with us If you have a ballot place, come and join our team! In the run up to the marathon we’ll give you training tips and advice from a specialist personal trainer. After the race, we’ll give you a wonderful reception with refreshments and massages. We’ll support you every step of the way. If you’d like to join #TeamOrange or to find out more, do get in touch with Rachel on 020 7803 4828 or events@muscular-dystrophy.org

Spirit of Christmas in Oxford Our annual Spirit of Christmas carol concert at Oxford’s beautiful Christ Church Cathedral was awash with festive cheer, magical music and readings from stars of stage and screen. The sparkling line-up of readers who helped us welcome in Christmas included (pictured below from left to right) Honeysuckle Weeks, Alison Steadman, Robert Glenister, Jemma Redgrave and Michael Elwyn, and the choir of the Dragon School provided the music. A record 550 guests joined us, raising a staggering £16,000. Many thanks to the Committee for their support in ensuring the evening’s success and to Lily Ilott, our wonderful candle-lighter.

Join #TeamOrange in 2014 If you would like to find out more about any of these events, do get in touch with us on 020 7803 4826 or volunteerfundraising@muscular-dystrophy.org Event name

Date

Muscular Dystrophy 9 March Campaign Durham Town and Gown 10k

Registration fee Sponsorship £16 £50

London Marathon

13 April £100 £1,600

Belfast Marathon

5 May

Various £200

Muscular Dystrophy Campaign Oxford Town and Gown 10k

11 May

£20

London 2 Brighton

24-25 May £85

£375

Great Manchester Run

18 May £40

£250

Edinburgh Marathon

24-25 May £85

£375

Bupa London 10,000

26 May £25

£150

Coast to Coast Cycle

12-15 June or 26 August – 7 September

£1,050

RideLondon Freecycle

10 August n/a

n/a

RideLondon100

10 August £45

£550

London to Paris

30 July – 3 August £149 2-6 September*

£1,300

Lap the Lough

24 August £30

£100

Pedal for Scotland 7 September

£149

£26 (47 miles) £40 (110 miles)

£50

£200

Great North Run

7 September £35

£300

Muscular Dystrophy Campaign Cambridge Town and Gown 10k

12 October £20

£50

Great Birmingham Run

19 October £20

£200

Great South Run

26 October

£200

£25

*Alternative dates available, please get in touch with our events team to ask for further details.


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Not a lot of people even knew “I had muscular dystrophy. “

That random summer’s day run For Emma Peirce (33), running in the Muscular Dystrophy Campaign Town and Gown 10k in Cambridge in October 2013 was one of the best days of her life. When she crossed the finish line not only had she run her first-ever 10k in under an hour, but she’d also clocked up a huge personal achievement. Emma, who was diagnosed with facioscapulohumeral (FSH) muscular dystrophy six years ago, said the race was a huge milestone for her physically and emotionally. “I planned to finish the race in under an hour, which I did (57:57); my sister and I were the first to finish in our team, with only two seconds between us. It was quite an emotional race for me; my sister and I ran the whole race side-by-side and when we crossed the finish line we hugged and burst into tears. “My mum and step-dad came to watch, as well as my friends and their friends and family, my boyfriend and my friends even marshalled on the day.” Born in Aylesbury, Emma grew up in Kent and left home at 19 to complete a health studies degree in Berkshire. She now works full-time as a project co-ordinator in Cambridge. Her father was diagnosed with FSH after having been misdiagnosed for 17 years, and she herself had had mild FSH symptoms growing up, most significantly being that she could not close her eyes when she slept and pain in her upper back. As a fit and strong 27-year-old, she was sent for blood tests “I had a bit of an epiphany at that point in anticipation of the DNA test results and decided to take some unpaid leave to go travelling to New Zealand and Australia. My test results came through while I was away. I was in a campervan near the Fox Glacier when I got the news that the test results were positive and I did, in fact, have FSH. It was quite surreal. “I asked the consultant what I should do (I had planned my first-ever snowboarding trip for just a few days’ time) they said to carry on with my travels and they’d see me when I returned home. Unfortunately I had an awkward fall snowboarding so I stopped the snowboarding but carried on with my travels not realising just what I had done. This fall has led to endless problems with my back, which then cause problems with my muscular dystrophy; if my posture is incorrect, it causes me pain. “I have learnt to calibrate my goals depending on how I feel. My symptoms are mild at the moment, pain being the main issue but I am proud of what I am able to do right now. As a result of the snowboarding fall, I have had two back operations and my goals post-operatively were always to walk to the postbox at the end of

my road – building up slowly. I know I will never be able to run a marathon, so running a 10k race – and in under an hour – was my goal for the Town and Gown 10k,” Emma said. When a friend heard about the inaugural Town and Gown 10k in Cambridge in 2012, she put it to Emma to take on the 2013 event, and she decided to do it. “I had a personal goal to run the whole way, and I did. I’m amazed! I started training in April, but due to lower back problems had to rest for nearly three months so swapped the running for walking and, when I could, doing lots of swimming and Pilates. “Before the race, not a lot of people even knew I had muscular dystrophy. Some close friends did, but everyone else just knew I had a bad back. I had never really told anybody. “My sister suggested I include a link to my JustGiving page on my Facebook page; this was a big deal for me. It felt like crossing a line, and I wasn’t sure I wanted to do that. And then at work, when everyone was asking me why I was doing the race, I suddenly realised I needed to change my attitude towards my condition, stop worrying and caring what people thought and start to lead by example.” Emma also helped as a media volunteer to promote the event in Cambridge. She went from not wanting the name of her condition to be included in a press release for the Cambridgeshire News, to doing a very personal and emotional 25-minute interview on radio. “It’s been quite a journey, in many ways. And it’s been very liberating. “In some ways, being more open about FSH feels as though I’ve just been diagnosed... I feel good and really proud that I have talked about my condition, and that my own attitude is changing. “I don’t know how things are going to turn out, or how my muscular dystrophy will progress. It isn’t who I am; it’s just a part of me. I try to think positively about the future, I often push myself to try new things and go to new places because of my condition – always thinking I need to make the most of my mobility while I am able to. “It is what it is, I guess, and I try to make the most of days when I feel good inside and out. “That random summer’s day turned out to be one of the best days of my life,” Emma said.


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paign m a C y h p o r t s y D Muscular

1 n 0 w k o G d n a n w o T The Durham

Sunday 9 March 2014 Lace up your trainers, don some orange, and come and run for us in our brand new Muscular Dystrophy Campaign Town and Gown 10k in Durham. Be one of the first! Come and join 500 runners on this multi-terrain and scenic 10k that stretches along the River Wear, allowing you to embrace the stunning sights of Durham. Whether you’re a serious runner or a fun runner, help us turn Durham orange in this chip-timed race and fundraise for the Muscular Dystrophy Campaign. Our fight against muscle-wasting conditions, which affect 70,000 people in the UK, depends on the support of people like you. Register today: t: 020 7803 4820 e: townandgown10k@muscular-dystrophy.org w: www.townandgown10k.com

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445


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News Here we bring you news and information, from all around the UK, of our work in leading the fight against muscular dystrophy and related neuromuscular conditions.

Clinical neuromuscular guidelines set to be produced by NICE The National Institute for Health and Care Excellence (NICE) has announced plans to develop long-awaited clinical guidelines for ‘uncommon neuromuscular conditions’. Work will begin in 2014. This is an excellent step towards the delivery of comprehensive specialist multi-disciplinary neuromuscular care by the NHS to both children and adults, especially as muscular dystrophy has to date only been included in NICE’s general standard for neurological care. It is also the result of several years of the charity’s campaigning activity, as well as an ongoing and constructive dialogue with NICE. To find out more about our work with NICE, do visit www.muscular-dystrophy.org/nice

Neuromuscular New report Forums and our calls for urgent online map of service improvements The Department of Health-funded to wheelchair Bridging the Gap project is now services fully up and running and we’ve launched Neuromuscular Forums in the North East, West Midlands, London and the South East, the East of England, Yorkshire and Humber, the North West and the Thames Valley and Wessex. The Forums are led by neuromuscular service users, clinicians, care advisors, physiotherapists and NHS commissioners and we have begun to identify the gaps in the provision of services for people with muscular dystrophy and related neuromuscular conditions in each region. If you’d like to join one of our Neuromuscular Forums, tell us about gaps in the provision of services in your area, or find out more about the Bridging the Gap project, do get in touch with Bobby Ancil on b.ancil@muscular-dystrophy.org

A newly-launched report has found that a wheelchair crisis is trapping disabled people in their homes, leaving some in bed and unable to go to work, socialise or even carry out basic tasks. Launched in November at a joint meeting of the All Party Parliamentary Group for Muscular Dystrophy and the All Party Parliamentary Group for Young Disabled People, the report Get Moving revealed that people often had to wait for up to six months for their first powered wheelchairs or replacement chairs and some families were struggling to find thousands of pounds to cover the cost of specialised wheelchairs. Visit our website to read the report in full. If you’d like to send a copy of the report to your MP, do get in touch with us.

New research funding partnership in Scotland The Scottish Public Health Minister Michael Mathieson announced in October that the Chief Scientist Office (CSO) would form a partnership with the Muscular Dystrophy Campaign and Action Duchenne to fund, together, a Clinical Training and Research Fellowship. The Fellowship, which is open to medical graduates usually during speciality training, offers the opportunity to encourage clinicians into an academic research career, and in this case, to train in clinical and/or laboratory research techniques related to Duchenne muscular dystrophy.

Research news Zebrafish and stem cell research A group of researchers in the USA has used a screen in zebrafish cells to identify three factors that promote muscle tissue formation in human induced pluripotent stem (iPS) cells. This is the first time researchers have been able to promote muscle cell formation from this type of stem cell using such a simple technique. The discovery could pave the way for stem cell transplantation as a therapy for muscular dystrophies and related neuromuscular conditions in the future.

Summit and Oxford University Summit Corporation plc, a pharmaceutical company based in Oxford, has announced a strategic alliance with Oxford University to further research into the up-regulation of utrophin. The company already has a potential drug (called SMT C1100) in clinical trial and the new partnership will see them working closely with Prof Dame Kay Davies and Dr Angela Russell at Oxford University to identify new compounds that can up-regulate utrophin and develop them for testing in clinical trials. You will find further and more in-depth research news in Target Research, and at www.muscular-dystrophy.org/research


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Scotland hospice and respite provision in the spotlight Members of the Scottish Parliament were joined in December by healthcare and hospice providers and people affected by muscle-wasting conditions for a Cross Party Group on Muscular Dystrophy meeting in the Scottish Parliament. The meeting was chaired by Jackie Baillie MSP (see p17) and focused on hospice and respite provision for young disabled adults in Scotland. The Children’s Hospice Association Scotland (CHAS) announced last year that it would be withdrawing its services for these young adults. CHAS’ decision has widespread implications for both young disabled adults in Scotland and their families and friends, who often act as their primary carers. Robert Watson, who has Duchenne muscular dystrophy, raised this crucial issue in November in a petition presented to the Scottish Parliament, which will result in a Scottish Parliament debate in the spring. Fill in our online survey on hospice and respite provision in Scotland. Visit our website to find out more about this survey, the hospice and respite campaign or any other areas of the group’s work.

UK Rare Disease Strategy launched

Call for service investment in Wales

The Department of Health in November launched a new UK Strategy for Rare Diseases with the aim of making changes to help people with rare complex conditions, such as muscular dystrophy and related neuromuscular conditions. The Strategy will incorporate implementation plans put together by the health service in each of the four countries in the UK and will focus on empowering those affected by rare diseases; identifying and preventing rare diseases; diagnosis and early intervention; co-ordination of care, and the role of research. The Muscular Dystrophy Campaign was highlighted as an example of good practice whereby people with muscle-wasting conditions are seen in one place at one time by the local paediatrician, the regional neurologist, therapists from both local and regional services and a representative of the charity.

Families across Wales affected by rare and devastating muscle-wasting conditions recently called for investment in ‘desperately overstretched’ NHS services. Many were still facing a struggle to access life-transforming specialist care, basic equipment and vital emotional support. More than 50 patients, Assembly Members and health professionals joined in the Muscular Dystrophy Campaign’s Welsh Assembly lobby to compel NHS Wales to commit to increased funding for specialist care for those affected by muscular dystrophy and related neuromuscular conditions. They are calling for an urgent investment of £650,000 to increase capacity among specialist health workers and thereby decrease the amount of emergency hospital care required among the more than 3,400 people in Wales affected by muscle-wasting conditions.

Muscle Groups across the UK The Muscular Dystrophy Campaign has expanded its network of Muscle Groups, giving people with muscular dystrophy and related neuromuscular conditions more opportunities to influence change in response to evidence of serious inadequacies and inconsistencies in care across the UK. If you’d like to join a Muscle Group near you, check our website for dates and venues, or get in touch with us to find out more. If you’d like to find out about any of our campaigning work, do get in touch with us on 020 7803 4839 or campaigns@muscular-dystrophy.org

Trailblazers Trailblazers and higher education Access to higher education is still not up to scratch according to the Trailblazers report University Challenge, launched in October last year. The report shares experiences, guidance and hints and tips to future students, but also reveals that many disabled students are unable to access essential facilities such as lecture theatres and libraries, with institutions also failing to signpost vital information, from details of accessible university accommodation to advice for wheelchair-users on how to navigate campuses. The report attracted much media interest and saw several Trailblazers on national and regional media. Read the report at www.muscular-dystrophy.org/ university_challenge

Trailblazers Link Up in Scotland Trailblazers, in partnership with Alliance Scotland, have launched the exciting, uniquely Scottish, Link Up project to give people the opportunity to meet up and build connections with slightly older disabled people living with a neuromuscular condition. The network is designed for people not only to share information, advice and support about their condition, but also to socialise. Catherine Gillies, a mentor from Glasgow, got involved so she could help further the prospects and quality of life for herself and other people with disabilities. ‘Cat’, 25, has been involved with Trailblazers since 2009, as she wanted to see if she could change things, make things easier and shed light on the hardships of being young and disabled. ”I have enjoyed working on the campaigns that focused on going to university, cinemas and leisure, and the disability hate crime campaign. That last one is a paradox, I know, but I got to go to Parliament and ask questions on behalf of people,” Cat said. In her spare time, Cat enjoys listening to heavy metal and rock music, catching up on TV series and watching movies, watching wrestling and going out for gigs and food. She studied history at the University of Strathclyde and achieved an Honours Bachelor’s degree in History, and then a Masters in Information Management and Preservation at the University of Glasgow. She has a brother, Niall, and a sister, Rhona, both of whom share Cat’s interest in heavy metal and rock music. Her mum and dad are retired schoolteachers and her dad is a mountain-climber. We will be holding our next meeting to discuss the project in Glasgow at the Beardmore Hotel in Clydebank from 3.30-5pm. If you’d like to get involved, do get in touch with Tanvi Vyas at t.vyas@muscular-dystrophy.org


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Update on

advocacy The Muscular Dystrophy Campaign’s advocacy service has made a real difference to many people’s lives. People affected by muscle-wasting conditions have struggled to get the assistance they require to live a full and independent life, and have therefore approached our advocacy service to help them fight for the services, benefits and equipment they are entitled to. In partnership with the prestigious law firm, Hogan Lovells, who provide pro bono legal assistance for patients and families, the charity has dealt with around 120 cases during the past year, where people have received unfair decisions. By writing on behalf of the person concerned, engaging and briefing local MPs and gaining media coverage and legal representation, the Muscular Dystrophy Campaign has successfully overturned many cases, securing around £600k worth of care, support and equipment previously denied.

Fighting for people affected by ‘bedroom tax’ Despite the Department of Work and Pensions (DWP)’s welcome decision to exempt some severely disabled children from the housing benefits cap, the decision to abolish the spare room subsidy – or ‘bedroom tax’ – continues to pose huge concerns for the majority of disabled adults and their families.

M

any disabled people who require adapted housing and special access to accommodate their needs have been hit the hardest by this. Particularly for those living on their own or with a partner, extra space is essential for vital home adaptations and equipment storage – as well as overnight stays for their carers. Only adults – who have been designated 24-hour care with the need for assistance from an overnight carer (outside of the family) – are exempt. This also highlights another glaring flaw – that the overnight care exemption does not currently apply to families with disabled children, and is rather geared towards disabled people and their partners. If appropriate new housing cannot be allocated, these families are faced with the impossible decision of moving to a property that cannot accommodate their needs, or being forced to deal with the shortfall themselves. We at the Muscular Dystrophy

Campaign are deeply concerned by this and are committed to providing support where we can to rectify these discrepancies through the support provided by our advocacy service. Denise Gough has myotonic dystrophy and lives in a two-bedroom flat with her husband, David, who is her primary carer. Following the reform, Denise was notified of a decision to reduce her housing benefit. However, the fluctuating nature of Denise’s condition means that, on occasion, a carer needs to stay overnight in the spare room. This room was also used to store vital specialist equipment and to allow her husband to sleep while Denise was on night-time ventilation. Alongside this, they had adapted their property significantly so David could provide effective care and Denise could have an improved quality of life. Our advocacy team wrote to the Goughs’ local authority, and secured a discretionary housing payment and her

Become an Advocacy Ambassador The Muscular Dystrophy Campaign is thrilled to announce a brand new programme to enable us to support more people and families across England living with rare musclewasting conditions. The Advocacy Ambassador programme, made possible by a grant from the Big Lottery Fund Reaching Communities, sees the appointment of Advocacy Ambassadors to create a peer-to-peer network across England, initially made up of a core group of people who are directly or indirectly affected by a neuromuscular condition. Advocacy Ambassadors already have knowledge of navigating social and health services, and to complement these personal experiences, they will all get specialist peer advocacy training to advise peers locally who need support, and assist others trying to secure support essential to health, independence and quality of life. If you’d like to get involved in this exciting new programme, do apply. Visit www.muscular-dystrophy.org and search ‘advocacy ambassadors’ for an application form and role description. If you have any questions, our Advocacy Development Officer, Judith Merry at j.merry@musculardystrophy.org will be happy to help you. right to continue living in her home. “It was great to have somebody there to talk to, someone who understands what it is like. As a carer, you feel as though you are running into walls and no-one is listening to you. There were no onebedroom places [in our area] that were adapted or big enough. You’re doing such a great job,” said David. The charity also works closely with Hogan Lovells and recently sought legal advice for someone who lives alone in a house specifically adapted for their condition. Following changes to the ‘bedroom tax,’ the landlord reclassified the property as having two rooms rather than one, despite the fact that the second room’s adaptations made it unsuitable as a bedroom. As well as this, the family argues that pursuing such a course would be incompatible with the European Convention on Human Rights and the need not to discriminate on grounds of disability. The case is currently ongoing.

Our in-house advocacy service is funded by the generous support of the Henry Smith Charity. If you’re struggling to get the care, support and equipment you’re entitled to, do get in touch with us on 0800 652 6352 or info@muscular-dystrophy.org


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Q&A with a Paralympian Stephen, who ‘loves being able to help out the Muscular Dystrophy Campaign in Scotland’ and counts it ‘a privilege’, took a few minutes out of his schedule to answer a quick Q&A.

Scottish, British and European Boccia champion and Paralympics GB team member, Stephen McGuire (28) from Hamilton, is an ambassador for the Muscular Dystrophy Campaign. He and his brother, Pete (30), also an ambassador and Paralympic GB Boccia player, both have an undiagnosed form of muscular dystrophy and have been involved in a number of fundraising events for the charity in between their demanding training camps.

Q: Can you sum up what competing at the London 2012 Paralympics was like for you? A: London 2012 Paralympics was the most surreal experience of my life. From the moment I entered the stadium for the opening ceremony and hit the wall of noise, I knew this was going to be incredible. Everywhere I went I was asked for autographs and met with applause by the British public.

Q: What were the main highlights and stand-out moments for you? A: For me, entering the stadium for the opening ceremony and being able to win matches in front of a sell-out home crowd were absolute stand-out moments. When we were announced on to court, the British crowd were extremely vocal and made the Games so much easier for the athletes.

Q: What have you been doing since the Games? A: After the Games finished, I was able to take a few weeks off and got invited to lots of posh sports events. But then I quickly re-focused on getting back to doing what I do best. I learned so much from the London Games that I immediately began changing my game to try to stay ahead of the others. I’ve also been able to become an ambassador for the Muscular Dystrophy Campaign in Scotland. It’s something very close to me and my family and being able to help others with muscle-wasting conditions gives me great focus for the years ahead.

Q: In what ways has your life changed since the Paralympics? A: Competing in London has opened so many doors for me, and I’m privileged to be offered many opportunities to speak at schools, attend charity events as well as sports awards.

Q: You were invited to tea at Buckingham Palace; how did that came about, and what was it like? A: All Paralympians who competed in the London Games were invited to attend the

On the web www.gb-boccia.org Photograph: courtesy of Mansfield Chad

Queen’s Garden Party at Buckingham Palace. It was a chance to meet everyone again in a relaxed atmosphere. Being able to attend this event with my brother Peter, my dad, coach Jim Thomson, and Boccia assistants Ruth and Nicola, made this one of the


www.muscular-dystrophy.org 29

On the web

Uniting for Powerchair Football Week

www.thewfa.org.uk tw: @the_wfa

At the end of November, the Muscular Dystrophy Campaign and the Wheelchair Football Association launched the first-ever Powerchair Football Week to promote the sport to a wider audience. The week was a great success and we hope that you saw a number of stories about how Powerchair Football can have a positive impact on players and their families. As well as some interviews, stories and videos on our website, Facebook and Twitter, there were also a number of events that took place during the week. Here are some of the highlights: n

n

Crystal Palace launched their Powerchair Football session that will be running in Croydon every week. This was supported by Adam McEvoy from the WFA (pictured below) England Powerchair Football Player, Jon Bolding, attended a Disability Football Conference in Kent to tell his story of how the sport has grown since he started 12 years ago, to now training at St George’s Park with the FA England team

n a Powerchair Football Coaching course took place in

highlights of this year for me. At Buckingham Palace, I enjoyed being introduced to the Duke of Edinburgh. We spoke for a few minutes about the Games in London as well as life as a power wheelchair user. It was an incredible experience and one which will live with me forever.

Q: What are your short-term and long-term goals for Boccia? A: As Boccia is not a Commonwealth sport, I’m keen to get along and support the games in my home city of Glasgow. I’m extremely focused on getting back to training. We managed to retain our European title this year, which qualified us into the World Championships to be held in Beijing. Before that, we need to work hard and improve our basic skill consistency. The short-term goals would be to retain my British title, compete internationally against the world’s best and from this my long-term goal is to win a medal in Rio 2016. That would be a fitting way to cap my sporting career.

Q: What would you say to young disabled people to encourage them to play Boccia? A: I encourage all young people with an interest in sport to pursue their dream. If you are interested in competing recreationally, regionally, nationally or right up to Paralympic level, then the opportunities are out there. We are always looking for the next crop of potential Paralympians. Boccia is a very inclusive sport for individuals with neuromuscular conditions; it’s also a great way to be competitive, meet friends and travel the world. There are huge physical benefits from being active and Boccia is one of the fastest growing sports within the UK. If anyone is interested in Boccia, do please get in touch through the GB Boccia website or research a local club in your area.

Glasgow, where 24 players and football coaches were trained. This has led to a new team being formed in Falkirk  and the first Scottish Powerchair Football League event taking place with six teams participating

n

Sevenoaks PFC held an open training session to allow new coaches and interested clubs to come and observe, ask questions and learn more about the sport.

This has been a great year for Powerchair Football as the sport has continued to grow and Powerchair Football Week offered the perfect opportunity to celebrate. In the last three months, we have seen new clubs form in Darlington, Plymouth (Ocean City PFC) and Newcastle.


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Best of the web

Our community 11,600 LIKES

6,900

FOLLOWERS

27,000 VIEWS

Hello, and happy New Year I hope you all had a wonderful, restful Christmas. The festive period is always busy, with so much fantastic fundraising taking place. Thank you for tweeting us your photos and achievements, and sharing these on Facebook. We love receiving these so keep them coming! Did you follow our online Christmas advent calendar during #MDCember? Once again we used this to honour some of our brightest fundraising stars of the year. http://muscular-dystrophy.wix.com/mdcember2013 We were delighted with the success of the UK‘s first ever Powerchair Football Week (and you can read a bit more about it on page 27). We joined forces with the Wheelchair Football Association (WFA) to celebrate this fantastic sport, and between 25 November and 1 December we posted videos, photos and real-life stories of players, parents, coaches and club managers. Thanks to everyone who shared these posts, we reached over 92,000 people on Twitter and 54,000 people on Facebook! Visit our YouTube channel to watch our video and see why so many call it the beautiful game. www.youtube.com/MuscularDystrophy It was fantastic to hear their passion, and we really hope this has inspired more young people to get involved. Wishing you all a healthy, happy 2014.

Helen Putnam Online Manager

t: 020 7803 4833 e: h.putnam@muscular-dystrophy.org tw: @TargetMD

Martin Hywood @HywoodMartin @powerchairfootball week Had a fantastic morning with Alun and the team. Great people.

Adam McEvoy @Adam_TheWFA @PowerchairFootball week was so busy! Hoping the additional awareness raised will see more new faces to our game in the future!!

Hello from Target Research I’d like to welcome you to the first edition of Target Research of 2014, and to start by wishing all of our readers and supporters a happy New Year! In this issue of the research magazine, we focus on the Muscular Dystrophy Campaign’s new research strategy. This important document defines how the charity will fund research and what types of research we will fund over the next five years. It was produced following consultation with leading scientists and clinicians, as well as our families. You can find out more on pages six and seven, with our handy summary of the new strategy. We also interview Dr Lizzie Harris – a clinician who has recently been awarded a Muscular Dystrophy Campaign-funded Clinical Training and Research Fellowship to carry out research into limb girdle muscular dystrophy at Newcastle University. Her project aims to offer a precise genetic diagnosis to people with the condition and also to develop methods that might help to improve diagnostic testing in the future. As well as these stories, as always we have a round-up of the latest research news stories from around the world including updates on clinical trials. I do hope you enjoy this edition of Target Research. If you have any research questions you’d like us to answer in the next one, I’d love to hear from you.

Neil Bennett Editor, Target Research t: 020 7803 4813 e: research@muscular-dystrophy.org tw: @ResearchMDC


Target MD and Target Research

Now more than ever, we rely on every penny of your donations to fund vital research and provide support and care for people with muscular dystrophy and related neuromuscular conditions. With this in mind, we‘re inviting you to subscribe to Target MD and Target Research – both to be delivered to you four times a year. That’s right! You will receive Target MD four times a year along with Target Research. And all for an annual subscription gift of just £18. This will help us cover our costs – even reduce them – while ensuring the same editorial quality you’d expect from every issue of Target MD and Target Research. And because they now only go to people like you who really want to read them, and they’re both now produced fully in-house, the Muscular Dystrophy Campaign can free up more funds to spend on further research, campaigning, support and equipment grants.

If you’d like to subscribe to the magazines, please post your details, together with a cheque for £18 made payable to ‘Muscular Dystrophy Campaign’ to Freepost Plus RTEE-SUBA-KXZT Muscular Dystrophy Campaign at 61a Great Suffolk Street, LONDON SE1 0BU: I wish to subscribe to Target MD and Target Research for one year, at a cost of £18.

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Target MD Issue 1 of 2014 Registered Charity No. 205395 and Registered Scottish Charity No. SC039445


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Our Awards Vice President Eileen McCallum presented the annual awards at our Scottish Conference, while President Sue Barker MBE did the honours at our National Conference.

Kite Awards 2013 Community Champion Matalan Matalan has adopted the Muscular Dystrophy Campaign as their regional charity. Since January 2012, Matalan Scotland has raised over £140,000 – and has pledged to raise a further £100,000 in 2013/14 – by selling merchandise, such as pens, trolley keyrings and wristbands, holding in-store fundraising involving their staff and customers, and undertaking sponsored events and organising raffles. Their staff are also very motivated in promoting our branded merchandise and pushing ticket sales for their raffle competitions.

Volunteer of the Year Brian Tolmie Brian was convinced by Robbie Warner to join the Muscular Dystrophy Campaign’s Scottish Council after he retired from a successful career in social work. He quickly became actively involved and was soon Treasurer of the council and Chairman of the Glasgow Sports Committee which organises the successful Question of Support sports quiz and dinner. Very generous with his time and with a ‘heart of gold’, he has a skill for involving others in fundraising events and has successfully convinced others to participate in fundraising events, donate auction prizes and purchase tables at sports quiz. Since he became involved, Brian has helped to raise almost £20,000.

Campaigner of the Year Karis Williamson Fifteen-year-old Karis Williamson from Inverness, who has congenital muscular dystrophy, has been actively involved in the Trailblazers network for just over two years. She travels significant distances to attend events, and plays a leading role in the Trailblazers work, currently by helping to set up the Trailblazers Link Up project, which will support young people with muscular dystrophy in Scotland. Always thinking of new campaigns, Karis has recently decided to start her own campaign on access to emergency services, after breaking down on the way to the Scottish Muscle Network fun day in Stirling last year.

Lifetime Achievement

President’s Awards 2013 The Muscular Dystrophy Campaign is proud to honour individuals who have contributed to funding research and support for people affected by muscle-wasting conditions by fundraising, campaigning, researching and the hundreds of amazing things that our supporters get involved in.

Fundraiser of the Year: Alex Johnson

Fundraising Group of the Year: Abbi campaign: 1 in a million

Corporate Supporter of the Year: Matalan

Charity Champions: Martin Hywood; Judy and Brian Hammans; Corinne Betts ; Steve Hiles

Trailblazer of the Year: Luke Baily

Campaigner of the Year: Mark Creswick

Carer of the Year: Jackie Greenhalgh

Communicator of the Year: Rachel Kean

Scientist of the Year: Prof Francesco Muntoni on behalf of the MDEX Consortium

NHS Champion of the Year: Carolyn Young

Lifetime Achievement Award: Professor Victor Dubowitz

Patron’s Award: Outstanding Lifetime Achievement: Lord Richard Attenborough (Honorary Life President)

Jim Fraser

Save the date for 2014

Jim Fraser, current Treasurer of the Lanarkshire Branch, has truly given a lifetime of service to the Muscular Dystrophy Campaign. He has volunteered in that role for 46 years and what makes this all the more remarkable is that he has no personal connection to muscular dystrophy. He just happened to be in the church in 1967 when he met the then chair of the Lanarkshire Branch, Jim Crooks who asked if he ‘fancied being involved’. Jim is also keen to support local families affected by muscular dystrophy and help out at fundraising events and collections. It is difficult to find the words to do justice to 46 years of contribution and indeed even his fellow branch members found it difficult to keep track of the number of people that Jim’s efforts have helped.

Please come and join us at our conferences in 2014. Make a note in your diary that the Scottish Conference will take place on Saturday 11 October at the Beardmore Conference Centre in Glasgow, and the National Conference will take place at the Hilton Hotel in Coventry – on Saturday 18 October. We’d love to see you there – more details to follow.


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Where would we be without you? The truth is, we wouldn’t be able to fight muscle-wasting conditions without your support.

It was scary when our mum said we should practise for when we’d need to be in a wheelchair. We didn’t want to give up.

D

an is 17 years old. He has Duchenne muscular dystrophy. His twin brother, Sam, and younger brother, Tom, 14, also have the severe muscle-wasting condition. All three of them use powerchairs.

Duchenne muscular dystrophy is a genetic muscle-wasting condition that causes muscles to weaken and waste over time, leading to increasingly severe disability. The Muscular Dystrophy Campaign has given Dan, Sam and Tom’s mum and dad emotional and practical support, as well as information about their condition. The charity funds pioneering research into Duchenne muscular dystrophy and other related neuromuscular conditions and the family hopes that one day there will be an effective treatment – or indeed a cure – for their condition. We have been able to do this work because people like you support us with voluntary donations and gifts in your Will. You don’t have to be wealthy to leave a gift to us in your Will. When you remember the Muscular Dystrophy Campaign in your Will, you are helping to build a future for children like Dan, Sam and Tom. Today. None of this work, now or in the future, is possible without you. For more information on legacies and to request an information booklet, please get in touch with Sarah Greenwood: t: 020 7803 4834 e: s.greenwood@muscular-dystrophy.org w: www.muscular-dystrophy.org/legacy

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445



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