magazine
Target MD Issue 4 of 4 2014
New Awaaz group in West Yorkshire
Fundraising in the North Focus on Newcastle 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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Welcome
As you read through Target MD, I think you will enjoy reading about the progress in the fight to defeat muscle-wasting conditions but I would like to pause for a moment to reflect on the contribution made by the late Lord Attenborough to our cause. I was fortunate to be asked to speak on BBC and Sky news and on many local news programmes about the huge contribution made to our charity by ‘Dickie’, as he was known. He raised huge sums for research, he personally led many fundraising campaigns and he took a close interest in the work of the charity. Above all, perhaps, he enjoyed being with children and families, revealing his caring and compassionate side that – allied with his vision and determination – made him such an outstanding President. We will miss him but never forget the role he played over so many years. I have mentioned our commitment to research and we are delighted with the decision by the European Medicines Agency to grant marketing authorisation for a new treatment for Duchenne muscular dystrophy, known as Translarna (formerly ataluren). This is the first treatment to target an underlying mutation that leads to the condition, and it is suitable for a relatively small group of boys with what is known as a ‘nonsense’ mutation. This is a major step forward, which underlines the promise of genetic medicines and we are pressing now to ensure Translarna is available in the UK without delay. The article on page 6 gives you more information and sets out how you can help us. The launch of the John Walton Muscular Dystrophy Research Centre in Newcastle in late November, in recognition of a lifetime spent in the field of muscular dystrophy and related neuromuscular conditions, will be a fitting tribute to John Walton’s far-sighted work in research and clinical care. As a founder of the charity in 1959, John Walton has continued to promote the interests of people with muscle-wasting conditions throughout his career, latterly as a very effective member of the House of Lords. We send our warmest congratulations to John Walton on this latest, richly deserved honour in a long and distinguished career. Finally, as we look forward to Christmas and the New Year, perhaps you will be able to join us at one of our ‘Spirit of Christmas’ events around the country? With very best wishes
Robert Meadowcroft Chief Executive
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Contents Features
News
Regular
08 No time to waste
22 New ‘Awaaz’ group in West Yorkshire
24 Update on advocacy
08 Breakthrough North East
22 Respite for young adults in Scotland
25 What do you think
09 What we fund in Newcastle
22 Two new muscle-wasting genes discovered
28 Get involved
11 Top marks for fundraising gran 12 Break the mould 15 Lord Richard Attenborough 16 Run our Durham Town and Gown 10k 2015 19 A ‘beacon for excellence’ in London
30 Best of the web
22 Full results of drisapersen phase 2 trial 23 First-ever online map of neuromuscular resource 23 Trailblazers secure delay in changes to Disabled Students’ Allowance Cover image: Ella Dixon (8) on a promotional shoot for the Great North Run. Ella, who lives in Kendal, Cumbria, is a manifesting carrier of Duchenne muscular dystrophy.
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About us We are the UK charity for people affected by more than 60 different muscle-wasting conditions. • We support research to drive the development of effective treatments and cures for all conditions. • We ensure access to specialist NHS care. • We provide services and opportunities that enable individuals and their families to live as independently as possible. We know we can beat muscle-wasting conditions more quickly if we work together. We are uniting skills, knowledge and resources in the UK and working with others around the world so we can improve the quality of life for the people affected, and bring cures closer to reality.
Interact with us and around 18,000 fans on our Facebook page at: www.facebook.com/ musculardystrophycampaign
Join 8,500 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 Design Toby Maslin 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
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Hello Welcome to our final edition of Target MD for 2014, in which we focus on our work in various parts of England. Having been involved for some years with the Newcastle Muscle Centre, we bring you news of all the work we do there to fund research and improve the lives of people affected by muscle-wasting conditions. And we tell you about a fun fundraising event the team there ran in August. We also acknowledge the role of one of our Honorary Life Presidents, Lord Walton of Detchant, whose contribution over almost six decades to neuromuscular research and the work at the Newcastle Muscle Centre has been extraordinary. With stories of a fundraising grandmother, a cheeky chappy from Essex and his gift fit for a prince, as well old, young and new fundraisers and campaigners doing outstanding work, we trust this edition will entertain and inspire you. As always, you’ll read our regular news round-up with more evidence of our campaigning, advocacy and fundraising successes across the UK, as well as a Powerchair Football update from the WFA. And our #TeamOrange calendar offers you a huge range of activities to get involved in. Do come and join us at a festive Spirit of Christmas concert near you, or don your Santa suit and join us in a local Santa run in December. Our online shop has a range of Christmas cards and gifts for you to choose from, so please do browse and shop at www.muscular-dystrophy.org/shop I’d like to wish you a happy Christmas and every good wish for you and your families for 2015. If you have any story ideas you’d like us to consider for future editions of the magazine, please do send them in – 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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No time to waste Archie Hill (9) loves two things in life more than anything else: his big brother Leyton (12), and football. Mum Louisa and dad Gary have explained to him that he is taking *Translarna so he can keep playing football with his friends for longer.
Archie was diagnosed with Duchenne muscular dystrophy when he was three years old. He is one of the 10 to 15 percent of boys whose condition is caused by what is known as a ‘nonsense’ or ‘stop’ mutation, making him eligible to take part in a phase III clinical trial for Translarna. Buckinghamshire-based mum, Louisa, shares the family’s experience of Archie’s diagnosis. “In 2008, our lives were easy – we were enjoying a happy family life. Everything changed in January 2009 after Archie’s nursery teacher told us he was having trouble rising from the floor. After a visit to our GP and some blood tests, we were referred to a paediatric consultant at Great Ormond Street Hospital. We were told Archie may have something called Duchenne muscular dystrophy, but we were strongly advised not to Google the condition. We ignored his advice and then prayed he was wrong. “A muscle biopsy and six agonising weeks later, the consultant confirmed Archie had Duchenne muscular dystrophy. All I can remember were the devastating few words that our beautiful perfect son may stop walking between 10 and 12, and his life-expectancy may only be into his 20s. We both felt our lives crumble beneath us. “If I’m honest, the next few months (even years) were a blur. As a family, we turned from being very sociable to one that just shut the door and stayed at home. After about 18 months, Gary and I were grateful to connect with the Muscular Dystrophy Campaign who offered us really welcome practical and emotional support at this really difficult time in our lives. We also realised we couldn’t carry on like this and decided to do some fundraising for research into Archie’s condition. I also signed up to run the London Marathon, and we organised a charity golf day (which has now turned into an annual event). Over the past four years, we’ve raised about £65k and, in 2013, we were proud to be nominated as ambassadors to the Muscular Dystrophy Campaign and donated £8k to the new Duchenne Research Breakthrough Fund. “Archie is one amazing little boy who shows such courage and determination. He is also very bright and asks us all the time about the medicine (Translarna) which he takes three times a day, dissolved in water. ‘Why am I taking this mum? Will it make me better? It will make my Duchenne better, won’t it?’” Archie’s trial at Great Ormond Street Hospital will run for 48 weeks, ending next summer. He was one of the last children to get on the trial for Translarna in the UK, having first to pass a series of tests. He sees the team at Great Ormond Street Hospital every eight weeks for assessment, where he has an ECG, tests for Vitamin D, blood pressure and he does the sixminute walk test. *Archie is taking part in a clinical trial of Translarna, which means he may be receiving a placebo. It is currently unclear how effective Translarna may be; results in previous trials have been encouraging.
“The six-minute walk test is the worst bit. He is so aware how important it is. When he does well, he says to me, ‘Mummy, I’ll really try hard to walk a long way,’ and ‘Mummy, I did it in so long – is that ok?’ “The reality is that our boy is on a clinical trial; he could be taking the placebo every day. He will need to complete screening tests before going on to the next stage of the trial. What if he isn’t able to do what he did before?
least Archie is on a clinical trial though. It “hasAtgiven him and all of us hope and positivity,
and is such a massive step forward from where we were four years ago, when we were told ‘just go home and enjoy him.
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“There are 220 children world-wide on the trial. That is not everyone, and there are children here not taking the drug. I don’t understand why it takes so long to make decisions about licensing these drugs. The EC has approved it, so why does it take so long for the decision to be made here in the UK? “People making these decisions don’t understand the impact on children of even a small change. It gives them more time to run and play football with their friends. It’s really buying precious time. Archie will have to deal with very difficult mental and physical challenges as his condition progresses. Translarna is buying time for Archie just to be a kid.” The Muscular Dystrophy Campaign knows there is no time to waste
in ensuring Translarna reaches the children it could help. We are pressing for Translarna to be available in UK for all suitable boys and are working with NHS decision-makers across the UK. We may need to submit up-todate evidence from families with young boys with Duchenne muscular dystrophy with the ‘nonsense’ or ‘stop’ mutation. If you can help us with this important step, please do get in touch with our Care, Information and Advocacy Manager, Rosanne Diaz, at r.diaz@muscular-dystrophy.org or on 020 7803 4802.
Archie (left) with Leyton on a family holiday in New York
On the web Find out more about Translarna here www.muscular-dystrophy.org /translarna
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Breakthrough North East With a long history of involvement in the North East of England, the charity is delighted to announce the launch of a new initiative – Breakthrough North East. Its goal is to make sure groundbreaking research and specialist healthcare services continue in the region for the 2,600 families affected by muscle-wasting conditions.
One such family is the Wright family in Sunderland. Layanne and Russell have three sons – Sam (9), Edward (6) and Joseph (3) – who are all affected by Becker muscular dystrophy. When pregnant with Joseph, Layanne discovered both Edward and unborn Joseph had the condition and, when Sam was six, he was also diagnosed with Becker muscular dystrophy. “In the wake of the boys’ diagnosis, I Googled ‘muscular dystrophy’ and found the Muscular Dystrophy Campaign’s website. I was immediately drawn to the charity and especially liked their information for newly-diagnosed families. They are always there to send me the information I need or to answer any questions I have. This is one of the reasons we are so passionate about fundraising for them wherever we can. “I’d love to be able to tell my boys, especially Sam, that by fundraising we can help to find a treatment or cure for a muscle-wasting condition like theirs,” said Layanne. The charity is calling on individuals and companies to do the same, by joining the Breakthrough North East network. The network, to be launched at the end of November, will bring together a prestigious group of businessmen and women – professional business people, business owners, senior partners and CEOs – to make a difference and help change the lives of those affected by muscle-wasting conditions in the region. If you’d like to find out about corporate or individual membership of this exclusive network, please get in touch with Sarah Clark, Senior Manager – Volunteer Fundraising (North region), on 07860 955578 / 01661 871596 or s.clark@muscular-dystrophy.org
Honouring Lord Walton The launch event at the International Centre for Life in Newcastle-upon-Tyne coincides with the renaming of the Neuromuscular Centre as The John Walton Muscular Dystrophy Research Centre. This recognises Lord Walton’s significant contribution to research into muscular dystrophy and related neuromuscular conditions over a period of almost 60 years. A founder and Honorary Life President of the Muscular Dystrophy Campaign, former Dean of Newcastle University and member of the House of Lords, Lord Walton of Detchant (pictured right) has called in the House of Lords and on the All Party Parliamentary Group for Muscular Dystrophy for improved care and support for people living with musclewasting conditions. He has consistently questioned Ministers and pressed them on the need to ensure people with musclewasting conditions are treated at major specialist centres with access to all the clinical expertise they need in one place.
Having specialised in neuromuscular “conditions since the 1950s, I have a personal interest in the level of health and social care services available to those living with these difficult conditions. Lord Walton
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As a student at Newcastle Medical School (then part of the University of Durham), Lord Walton specialised in neurology and studied muscular dystrophy, establishing a new classification system based on genetic information. He was Professor of Neurology and Dean of Medicine at the University of Newcastle. Lord Walton was a founder of the Muscular Dystrophy Campaign (then called the Muscular Dystrophy Group) in 1959. Lord Walton has held the presidencies of several medical organisations, including the General Medical Council (GMC), the British Medical Association (BMA) and the Royal Society of Medicine. He was created a life peer in 1989, and from 1993 to 1994 he chaired the Medical Ethics committee. In 2009, he spearheaded the All Party Parliamentary Group for Muscular Dystrophy’s influential Walton Report (so named to recognise Lord Walton’s contribution), which examined access to specialist, multi-disciplinary care for people with neuromuscular conditions. “Everyone connected with the Muscular Dystrophy Campaign recognises Lord Walton’s outstanding contributions to neuromuscular medicine over more than five decades. We are delighted his name will be attached to this prestigious centre, not only recognising his distinguished medical and research expertise in the neuromuscular field but also ensuring his name will forever be associated with groundbreaking research. That is what will ultimately change the lives of everyone affected by muscle-wasting conditions.” Robert Meadowcroft, Chief Executive.
On the web Find out more about our Fast Forward campaign, pressing for the speeding up of access to potential treatments for muscle-wasting condition www.muscular-dystrophy.org /fastforward
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What we fund in Newcastle The Muscle Centre at Newcastle upon Tyne One of three centres we support in England for the diagnosis and management of inherited muscle diseases, the Muscle Centre runs multi-disciplinary clinics for children and adults in Newcastle and elsewhere across the north of England. Professors Kate Bushby, Volker Straub and Hanns Lochmuller head the Centre and hold joint appointments between Newcastle University and the NHS. Their time is split between research and clinical commitments, both of which are mainly focused on muscle disease.
Investigating the genetic causes of limb girdle muscular dystrophies The Institute of Genetic Medicine, Faculty of Medical Sciences and Newcastle Biomedicine at the Centre for Life In a three-year research project that began in 2013, Clinical Research Fellow, Dr Lizzie Harris, aims to use a new state of the art genetic testing technique called next generation sequencing to find a genetic diagnosis for many people with limb girdle and related muscular dystrophies. New genetic causes of and clinical presentations of these muscular dystrophies are also expected to be found.
Understanding two different types of limb girdle muscular dystrophy Professor Kate Bushby at Newcastle University is supervising this four-year PhD project which began in 2011, and which aims to increase our understanding of the underlying cause of limb girdle muscular dystrophy types 2B and 2L. This will help to move towards the development of new therapeutic approaches for these conditions.
Clinical trial co-ordinator Since 2013, the charity has funded two clinical trial coordinator posts – one in Oxford and one in Newcastle. Based at the Newcastle Muscle Centre, the co-ordinator helps clinics participating in trials to administer and facilitate the setting up and running of clinical trials. Without these roles, it would be difficult for the Muscle Centres to take part in as many clinical trials as they currently do. They also ensure families and individuals that the Muscular Dystrophy Campaign supports have early access to trials and potential new treatments.
Muscle Centres in Newcastle and London. Having dedicated trial co-ordinators has revolutionised the way we can approach trials and other studies in the UK. We are delighted that the Muscular Dystrophy Campaign continues to be supportive of this crucial piece of the jigsaw for finding new therapies which are desperately needed.
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Professor Kate Bushby, Acting Research Chair of Neuromuscular Genetics at the Centre for Life
photo credit: ncjMedia Ltd
It was very far-sighted of the Muscular Dystrophy “Campaign to fund trial co-ordinators at the
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Run our Durham Town and Gown 10k in 2015 Inspired by their patients, members of the Newcastle Muscle Centre were among the first to sign up for our inaugural Muscular Dystrophy Campaign Town and Gown 10k in Durham in March. They took part in the closedstreets race through the beautiful North East city and, along with nearly 500 runners of all abilities, raised over £12,000 for the charity.
ITV newsreader, Nina Hossain (pictured above with Iris Jaworski), also took part in the race. “The run was fantastic and the route was the best I’ve ever done; so scenic and inspirational. Durham should be very proud, as should the hundreds of runners who gave up their Sunday morning to support the Muscular Dystrophy Campaign. Let’s make it thousands next year.” If you’d like to enjoy a similar experience, and support the vital work of our charity, do sign up for the Muscular Dystrophy Campaign Town and Gown 10k in Durham on Sunday 8 March 2015. Visit www.townandgown10k.com/Durham.
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Break the mould A Manchester family is determined that their three-year-old daughter’s disability will not define her. Single-minded in their desire to fight for everything she will want to achieve, they won’t let anything or anyone stand in their way.
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Mark and Jas Ollerenshaw said they would do their best to make sure their amazing and headstrong Willow Rose (pictured left) could achieve whatever she wanted to. “Willow Rose has the looks of a princess but the heart of a tomboy. She rarely frowns, and if she does, you know something is wrong. She knows exactly what she wants, and will never be defeated,” Mark said. “She amazes everyone she meets,” he said. Willow Rose loves to play on the Xbox with her eight-yearold brother, Nick, and currently the iPad is her best friend. She lights up a room when she rolls in with Whizzy, the powered wheelchair she’s been driving since she was 18 months old. It was when Willow Rose was about four months old that Mark and Jas realised something wasn’t quite right with her strength and development. They were given a provisional diagnosis of merosin deficient congenital muscular dystrophy, which has since been discounted, as it is not known which form of congenital muscular dystrophy Willow Rose has. Mark and Jas are hopeful that Professor Francesco Muntoni’s current research into identifying biomarkers will help identify which gene caused her condition. “Having Whizzy really brought out her character, and we believe it was one of the biggest things that helped her gain her personality. She suddenly had independence and the choice to decide where she wanted to go, and not just be pushed somewhere. This has been a huge influence in her life,” Mark said.
Willow Rose has the looks of a princess but the “heart of a tomboy. She rarely frowns, and if she does, you know something is wrong. She knows exactly what she wants, and will never be defeated Mark Ollerenshaw
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“When Willow Rose was diagnosed, everything in our lives changed. The future hopes and dreams we had in the back of minds were blown away. It hit us in different ways; Jas had days of not wanting to get out of bed, of feeling incredibly low; it was like going through a grieving process really. I dealt with it in my own way and have been focused on the fundraising side; I suppose to occupy my mind. “However, there is a future, a beautiful future and Willow Rose is the proof of that. We won’t let anything stop Willow Rose from gaining her right and independence in society. The worst thing anyone can say is that Willow Rose won’t be able to do it; we’ll show them! “From all of this, though, we are probably closer now as a family than we have ever been.” Mark started fundraising in 2012 when he set up a Just Giving page – Riding for Willow – for the charity. As a keen cyclist, Mark took on a lot of different sportive events and raised about £1,500. It wasn’t long before he set his sights on cycling from Land’s End to John O’Groats and in September Setting up a family fund like the Willow Rose Fund is a great way to help us fight muscle-wasting conditions. Please contact us on 0845 872 9058 or volunteerfundraising@muscular-dystrophy.org to find out more.
this year he made that happen. “The experience of cycling the length of the UK was unforgettable. If you are a keen cyclist, and ever get the chance to do it, I highly recommend it. We had two fantastic weeks of weather, with only 20 minutes of rain. Scotland was breathtaking, and if I had the opportunity to cycle it again, I would do it in a heartbeat!” When Jas and Mark went to an information day, organised by the Muscular Dystrophy Campaign in Daventry last year, they not only met Professor Muntoni but also learnt about the possibility of starting their own Family Fund. Working with Volunteer Fundraising Manager, Charles Horton, they set up their Family Fund – The Willow Rose Fund – with an ambitious target. “We have set our target at £100,000; it may be high and possibly unachievable but we will try our best to get there. We have raised nearly £5,000 for 2014, which has been amazing and we would like to take this opportunity to say a huge thank you to everyone who has donated. You are all Willow Rose’s heroes.” Mark and Jas have both worked for the Greater Manchester Police for about 15 years. It is where they met and where, until Willow Rose’s diagnosis, they were both frontline officers. They both currently hold daytime shift roles, with Jas currently working on a project for a new IT system for the Force, and Mark working as a resource officer for the Special Protective Services. Two of Mark’s colleagues – Wendy Bridges and Jason Goudie – came up with the idea of putting together a recipe book to sell to raise funds. “The idea then grew into the Hub Grub Cook Book, with 32 tried-and-tested recipes donated by colleagues, friends and family. It has sold nearly 400 copies so far and has been a fantastic tool in raising awareness of congenital muscular dystrophy,” said Mark. “A firm favourite with Willow Rose is chocolate cake. If she could, she would live on it!” Willow Rose has just started nursery school in Davyhulme and, according to her mum and dad, is growing every time she goes. “Willow Rose will surprise many people in life because she will accomplish anything she wants to, and I will do everything in my power to help her. She will never surprise me though, because I know she can do anything,” said Jas. “As for the future, who knows what Willow Rose wants to be? But believe me, if she wants to be an astronaut, we will do our absolute best to make sure she achieves everything that she wants to.”
n Willow Rose’s condition The congenital muscular dystrophies are a group of conditions that share an early presentation and a common muscle pathology. Congenital means ‘from birth’ and in the great majority of cases of congenital muscular dystrophy the initial symptoms are present at birth or in the first few months.
On the web Professor Francesco Muntoni’s research www.muscular-dystrophy.org
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Lord Richard Attenborough “
The most extraordinary President a charity could ever wish for.
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Robert Meadowcroft, CEO
“We were deeply saddened to learn of the death of our former President and long-term supporter of the Muscular Dystrophy Campaign, Lord Richard Attenborough, in August. Lord Attenborough, who had the wonderful gift of empathy and offered unwavering support for the many families he met in the fight against muscle-wasting conditions, dedicated himself to more than 50 years of support for the charity. I know the recent progress made in the battle to develop a treatment for muscular dystrophy - a battle he led for so many years - meant a great deal to him. For a man of his outstanding brilliance he had a real sense of humility, often saying it was he who gained most from the charity work he did, not the families who were always thrilled to meet him or indeed, the charity as a whole. He will be sorely missed and fondly remembered by the many people whose lives he touched, for a long time to come.” Robert Meadowcroft “It was Lord Attenborough who first introduced me to the Muscular Dystrophy Campaign. His commitment and passion towards helping others was infectious – he was truly one of the kindest and most generous people I have ever met. I feel proud to have called him a friend and to be continuing in his footsteps, supporting a cause that meant so much to him.” Sue Barker MBE, President of the Muscular Dystrophy Campaign
Lord Attenborough’s work with the Muscular Dystrophy Campaign It was in the late 1950s when the Muscular Dystrophy Group (later to become the Muscular Dystrophy Campaign) was in its infancy that Richard Attenborough first became involved with the charity. He felt a true affinity for the cause and was greatly affected by having met families living with the reality of muscle-wasting conditions. He often spoke movingly about a summer fair he attended in the early days and the impact of meeting young boys who were running a stall. The boys, who were all in wheelchairs, had Duchenne muscular dystrophy; their muscles were deteriorating and he was told they were unlikely to see their 18th birthdays. Struck by the juxtaposition of their lives with that of his own young son, Michael, he could not stop thinking about the difficulties the boys and their families would face, and so began 50 years of tireless support. Lord Attenborough set up an Appeals Committee that raised millions of pounds for research into the condition and introduced his celebrity friends to the cause. He became President in 1971 and held the post for 33 years. His dedication was unending; he travelled around the country between work commitments to thank supporters, even sending a recorded message to the AGM he was forced to miss – one of very few – because of the Gandhi filming schedule. In 2012, the charity established the Richard Attenborough Fellowship in honour of Lord Attenborough’s remarkable
contribution towards funding huge scientific advances in the development of the first treatment for muscular dystrophy. The Fellowships support talented clinicians aiding the progression of neuromuscular science. Lord Attenborough held many distinguished roles throughout his life, including President of the British Academy of Film and Television Arts and Life President of Chelsea Football Club. On behalf of the 70,000 people living with muscle-wasting conditions in the UK and all those whose lives he touched, the Muscular Dystrophy Campaign thanks Lord Attenborough for his remarkable commitment and dedication to helping others and gives our sympathies to his family at this very sad time. If you’d like to join Lord Attenborough’s son, The Honourable Michael Attenborough CBE, and his wife Karen, in continuing his great work and lifelong commitment to the charity and its research, please support the Richard Attenborough Fellowship Fund. If you’d like to find out more, please get in touch with Claire O’Connor on 020 7803 2862 or c.oconnor@muscular-dystrophy.org
On the web www.muscular-dystrophy.org/Lordattenboroughfund
www.muscular-dystrophy.org
Photo credit: The Bolton News Christine Ogden at Smithills School
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Top marks for fundraising gran Bolton pensioner, Christine Ogden, raised nearly £1,000 for research into the condition which affects her grandson by working with a local secondary school. Christine, 73, visited Smithills School as part of her longrunning commitment to raise awareness of muscular dystrophy and funds for research into muscle-wasting conditions. The pupils responded by raising £932 through a non-uniform day. A local resident of Smithills, Christine has been campaigning and fundraising for the charity for 11 years and has raised about £70,000 to date. She became involved with the charity when her grandson Alexander, 13, who lives in Scotland, was diagnosed with Duchenne muscular dystrophy
when he was just 18 months old. In Bolton, we estimate there are 98 boys with Duchenne muscular dystrophy, and about 400 with any other of the 60 muscle-wasting conditions we cover. Christine first saw the school fundraising in a local supermarket and asked if they’d do the same for the Muscular Dystrophy Campaign. They agreed. After speaking earlier in the year to Year 11 and Year Seven students about the condition, Christine asked the students to deliver 10-minute BBC-style reports on muscular dystrophy. “It was a fantastic day. It was amazing the different ideas they came up with. They had clearly listened and taken what I said on board. They were a credit,” said Christine. Excerpt from ‘Grandmother’s grand effort for research’, first published Monday 28 July 2014 in The Bolton News, by Jeremy Culley, reporter
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www.allterrainwheelchairs.co.uk
01952 471255
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A ‘beacon for excellence’ in London Wherever specialist neuromuscular healthcare
neuromuscular diseases and a multi-disciplinary team, led
needs are discussed across the UK, you can be
by Dr Ros Quinlivan, including a respiratory physiotherapists
sure the idea of a one-stop, multi-disciplinary
and gastroenterologists – built the dedicated centre from the ground up around patients’ needs.
specialist healthcare centre comes up. Well,
in London in September, that idea turned
life for patients but also to reduce unplanned admissions to
into reality. The Neuromuscular Complex Care
hospital for people with muscle-wasting conditions.
Centre (NMCC), a cutting-edge inpatient centre,
The centre aims not only to provide an improved quality of
Ravi Mehta, 25, who has Duchenne muscular dystrophy and
is a Muscular Dystrophy Campaign Advocacy Ambassador for
was officially opened at the National Hospital
London, was delighted someone had ‘finally done it’.
for Neurology and Neurosurgery in London.
“Before this, I’d have to go to appointments at lots of
different hospitals around London. It’s tiring and stressful for Leading health advocate, Sir Robert Francis QC, opened
everyone. Here, patients can stay overnight to have a sleep
the Centre. It was set up to improve access to health
study done, but I can also see a cardiologist and a neurologist
services for patients with neuromuscular and inherited
too. It’s brilliant,” he said.
metabolic disorders who require highly complex nursing
and medical care. The centre has six beds, is equipped with
GP, consultant or physiotherapist.
the latest respiratory and medical monitoring and also offers
psychological support for patients and their carers.
ensuring people right across the UK who are affected by
muscle-wasting conditions have access to vital specialist
“It’s a real pleasure to be present at something that is so
To attend the clinic you must be referred by either by your The Muscular Dystrophy Campaign is committed to
definitely going right and going to be a beacon for excellence.
neuromuscular healthcare wherever they live. The charity’s
The development of this centre shows how world-beating care
brand-new online map of services offers details of existing
can be provided at less cost than fragmented care. The Centre
services, and a platform to identify gaps in care.
is inspired by the commitment of the people who work here,” said Sir Robert Francis QC.
Do get in touch with us to find out about getting care and support
where you live; contact us on 0800 652 6352 or info@muscular-
The National Hospital for Neurology and Neurosurgery
– which has some of the world’s leading neurologists in
dystrophy.org or visit hub.muscular-dystrophy.org
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Hall family ties Among our outstanding supporters, there are many friends, family members and colleagues who take on fundraising challenges for people affected by muscle-wasting conditions. James Hall took on the Virgin London Marathon and l’Etape du Tour in 2013 for his Uncle Mark who has Becker muscular dystrophy. For James, the challenge was as much about raising funds for the charity as it was about having physical empathy for what his uncle experiences every day. Mark and James share their story. “I consider myself lucky to be able to play sport when there are plenty of people who don’t get the choice, given they have conditions such as my uncle’s,” said James. “So, going into my 30s, I was keen to make sure I remained fit and decided to aim to become the fittest I’d ever been; I found two specific challenges to help me towards that goal. “l’Etape was the first event on the list. [It’s an official cycle race for amateurs over a stage of the Tour de France, with an
aggressive time limit.] I knew it would require some serious fitness training, so as I was running more often I decided to have a go at the London Marathon. It seemed like a perfect combination of events for a challenge and to raise some money for the charity. “I had taken part in smaller running events, but these two events were another level in difficulty.” Mark, 44, said he was humbled when he found out his nephew wanted to take on these challenges for him, and in aid of the Muscular Dystrophy Campaign. “I was diagnosed with Becker muscular dystrophy when I was a toddler. Up until I was about 30, I managed very well, despite tiring easily and getting extreme cramps in my legs and arms when I overdid it. I was active in various sports, including scuba diving and motorcycle trials, and because I worked through the pain, my friends found it hard to understand when I did too much and could then hardly walk,” said Mark. For James, the challenge training was tough and required a lot of commitment. “I particularly remember a Friday evening in February, when it was freezing and windy and generally all-round miserable. I had to meet a friend of my dad’s in London and, when I met him in the hotel lobby, he asked why I looked like I was about
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to go out for a run in that weather. He thought I was mad, but respected my commitment and wished me luck! “A few hours later I was nearing home, with just a few miles to go. It was 9.30 on a Friday night; I was cold and my legs were killing me. Everything in my body questioned why I wasn’t in the warm pub with my friends. That made me think about the sponsorship I was raising and that, although my legs hurt, it was still my choice. I thought about my uncle’s legs and how they hurt all the time, with no option to stop. That really kept me going through tough nights in training and particularly in the last few miles of the marathon when the cramp was, quite frankly, horrendous.” “As it becomes more difficult for me to get about, I now despise steps and slopes and will take alternative routes wherever I can. I struggled on some steps at work about five years ago and my then manager hurried me on. When I pointed out I had muscular dystrophy, he said, ‘Give over, you’re just unfit.’ Lack My advice to anyone of awareness can be a problem for people like newly diagnosed with me, whose condition to muscular dystrophy is to some extent is invisible,” keep focused and positive. said Mark. Mark Mark, who lives in Guisely, North Leeds, with his wife, Emma and their two daughters, retired last year after working in local government for about 30 years. While most of his time is spent enjoying life with his family, he has recently become a volunteer Advocacy Ambassador for the charity. “It was James who got involved with the Muscular Dystrophy Campaign first, when he started training for the London Marathon. I got hold of T-shirts, balloons and banners [for his fundraising] and he did the rest. I have only recently connected with the charity,” Mark said. “My condition is progressive, and is therefore getting worse as I get older. I currently get around with the use of a walking stick, and I’m becoming more reliant on it. The only way I can get up stairs at home is to crawl up them, and elsewhere I’ve become reliant on lifts and escalators. I’ll eventually need a wheelchair to get around. “There is currently no cure for muscular dystrophy, so what James took on for me was so important in making people more aware of muscular dystrophy and raising funds for the charity.
“
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sometimes just ignored. It’s mainly because there’s a lack of knowledge about how disabilities affect people. “The role of Advocacy Ambassador is extremely important as there are so many people out there who need the support and advice. I know my parents would have used the service when I was first diagnosed with Becker muscular dystrophy. “My advice to anyone newly diagnosed with muscular dystrophy is to keep focused and positive. The Muscular Dystrophy Campaign provides lots of advice and support, and can signpost you to other services,” said Mark.
n Mark’s condition Becker muscular dystrophy Becker muscular dystrophy is a genetic muscle-wasting condition, which causes muscles to weaken and waste over time leading to increasing disability. Becker muscular dystrophy is caused when the body’s ability to produce a fully-functioning version of a vital muscle protein called dystrophin is compromised. Over 2,400 people in the UK are thought to have Becker muscular dystrophy. Most people with the condition are diagnosed by the time they reach their 20s and indeed, some are severely affected from childhood. However, others do not know they are affected until well into adult life. Becker muscular dystrophy almost always affects boys and men. It is not uncommon for several members of a family across generations to be affected.
On the web www.muscular-dystrophy.org/becker
James raised a whopping £4,000 “I’m not one to go beating the tin for sponsorship, and it’s not in my nature to pester people for sponsorship. When I told people about my challenges and why I was raising money for the Muscular Dystrophy Campaign, most people just happily offered sponsorship. I raised £2,000 from friends, family and colleagues and my employers, Rabobank, kindly matched my total,” said James. “James’ challenges were about making people aware of muscular dystrophy, and raising funds for the charity. Through my connection with the charity, I find it useful learning more about my condition, and finding others to connect with. I am sure in the future I’ll need more support from the charity. “I feel that disabled people in general are not always treated fairly and are sometimes labelled, stared at and
If you were successful in the London marathon ballot for 2015 and would like to become part of #TeamOrange, please contact our Events team on 020 7863 4828.
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News Here we bring you news and information, from all around the UK, of our work in fighting muscle-wasting conditions.
New ‘Awaaz’ group in West Yorkshire Two mums from West Yorkshire, working with our charity and the Leeds General Infirmary Neuromuscular Service, have created a new regional group for South Asian families affected by neuromuscular conditions. Anisa Kothia from Dewsbury and Nazma Chowdhury from Bradford, who both have sons with Duchenne muscular dystrophy, set up the Yorkshire Neuromuscular Awaaz Forum in August. With help from the Muscular Dystrophy Campaign, Anisa and Nazma are making contact with other families affected by muscle-wasting conditions who face common barriers to support and advice. ‘Awaaz’, which comes from the Hindi and Urdu word for ‘voice’, signifies Nazma’s and Anisa’s determination to provide representation and information for families in their area. The new group will meet on a regular basis as a support and advice network for local families. “We’ve been working together to identify ways to help vulnerable South Asian adults,children and families affected by neuromuscular conditions work for a better future together. We want to bring our Awaaz project to life, and to build strong community cohesion to reach out and access the care, advice and support that is available,” Nazma said the forum offered a place to go to share feelings and talk about common problems. “To find out vital information is a lengthy job in itself, as we have so much to deal with. Our new forum could be the missing link for families in the area.” If you’d like to find out more about the Yorkshire Neuromuscular Awaaz Forum, do get in touch with Bobby Ancil on b.ancil@muscular-dystrophy.org or 07902 018 8970.
Full results of drisapersen phase 2 trial Prosensa and GlaxoSmithKline (GSK) recently published the full results of a phase 2 trial of drisapersen – a molecular patch that promotes skipping of exon 51 of the dystrophin gene. The paper confirms the preliminary
results of the trial that were published last year, but the recent publication in Lancet Neurology, a peer-reviewed journal, is an important step in giving researchers and clinicians around the world access to data that could increase understanding of exon skipping technology and help in the design of future clinical trials.
New parliamentary inquiry into NHS reforms At the end of October, the All Party Parliamentary Group for Muscular Dystrophy launched a new investigation into the impact of NHS reforms on access to specialist neuromuscular care across England. With significant changes to the
NHS over the past 18 months, this has raised questions and highlighted the need to protect and strengthen vital specialised neuromuscular services. The APPG will incorporate NHS England decision-makers’ perspectives from all regions.
Respite for young adults in Scotland The lack of hospice and respite facilities for young disabled adults in Scotland took centre stage in the Scottish Parliament recently, thanks to our report: Give us a break. Jackie Baillie MSP secured the debate on Wednesday 8 October following increasing pressure by the Muscular Dystrophy Campaign on the Scottish Government to take action. Young adults have just as much right to suitable hospice and respite facilities as children or older adults, and we are calling for a full Government review of the issue. We are pleased the Minister announced he would be setting up a meeting with interested parties, where we look forward to playing a leading role. This is an important step, but action is also needed quickly and we are committed to pushing for urgent solutions to this gap in care.
Two new musclewasting genes discovered The University of Leicester approached the Muscular Dystrophy Campaign to respond to research which has pinpointed for the first time the genetic cause in some people affected by Emery-Dreifuss muscular dystrophy. Our research director, Dr Marita Pohlschmidt was quoted in the official press release issued by the University of Leicester, welcoming the results of the study. She said this would give people affected an accurate genetic diagnosis, help patients receive more precise information about the prognosis of the condition so they could make informed choices with regards to family planning. around the world access to data that could increase understanding of exon skipping technology and help in the design of future clinical trials.
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First-ever online map of neuromuscular resources Through our Bridging the Gap project, we’ve recently launched a brand new neuromuscular support and information online hub – the first of its kind. This new website offers information and resources for people affected by muscle-wasting conditions, as well as health professionals and NHS commissioners. Members of our regional Muscle Groups and neuromuscular forums helped in its creation, by giving us their ideas and recommendations. The site offers several dedicated sections, to make it easy to use. According to Neuromuscular Outreach Manager, Bobby Ancil, the website will continue to evolve as people request additional information they would like to see included on it.
groups and our volunteer Advocacy Ambassadors • listings of clinical trials • details of Neuromuscular Forums and their regional representatives, and Muscle Group meetings • listings of local hydrotherapy pools, wheelchair services and hospices and respite centres. Health professionals and NHS commissioners will find: • information about training events on neuromuscular conditions for physiotherapists • information about a working group for physiotherapists • the development of a GP e-learning module on musclewasting conditions • publications for health and social care professionals • NHS England neuromuscular service specifications • the prevalence of various neuromuscular conditions. Vivek Gohil, who has Duchenne muscular dystrophy, is an East Midlands Neuromuscular Champion. He also helped shape the content and functionality of the website. He finds the site easy to navigate. “The new site doesn’t overwhelm you with information on one page. I think the factsheets are a great addition and the map functionality is good and easy to use. The neuromuscular service pages are also really informative and I like the fact there are photos of clinicians as well as profiles of the Neuromuscular Champions, as they can help other people in the area contact people in similar situations as themselves.” We will continue to work with people living with muscle-wasting conditions, health professionals and commissioners to ensure we have accurate and useful information on the website. If you’d like to suggest an addition to the site, please get in touch with Bobby Ancil on 07920188970 or b.ancil@muscular-dystrophy.org
We hope that our new “online map of neuromuscular services will make it easier for people with musclewasting conditions to find the information they need, when they need it. We’ve worked closely with service users, health professionals and commissioners throughout the development of the site.
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Individuals and families will find: • details of clinics held at specialist neuromuscular centres across the UK • information fact sheets on neuromuscular conditions and where you can get advocacy support • details of peer-to-peer support
Update on eteplirsen Sarepta Therapeutics has recently held meetings with the Food and Drug Administration (FDA, the drug regulator in the USA) regarding
eteplirsen. The FDA has asked for further data, which the company hopes to acquire in time to submit a licence application in mid-2015.
Trailblazers secure delay in changes to Disabled Students’ Allowance The Department for Business, Innovation and Skills (BIS) in September published a written statement announcing that the proposed changes to the Disabled Students’ Allowance (DSA) had been postponed until the beginning of the 2016/17 academic year. This announcement came just five weeks after Trailblazers Ambassadors and representatives from the Muscular Dystrophy Campaign met with Government officials at BIS to share our concerns about the proposed changes. DSA is a fund which supports disabled students through university, helping to cover costs of specialist equipment, non-medical helpers, extra travel and other costs. This allowance is seen as a really important tool when improving access to university. The Government wanted universities to take responsibility to make ‘reasonable adjustments’ and wanted to change which equipment could be funded. Trailblazers raised concerns that this could result in variable support and may have a negative impact on disabled students. In the written statement from BIS, Mr Clark stated: “I have also listened to the views and concerns of representatives across the higher education and disability sectors, as well as receiving representations... We are determined to ensure that disabled students should be able to make use of and develop their talents through higher education and that there should be no cap on their aspirations.” For more information and for details of how to get involved with Trailblazers, please contact Victoria Wright on 020 7803 4807 or v.wright@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.
National Paralympic Day Ollie Hynd and Trailblazers in London at National Paralympic Day Trailblazers were joined by charity ambassador and Paralympic gold medallist, Ollie Hynd, at the National Paralympic Day event in August at London’s Queen Elizabeth Olympic Park. Ollie, fresh from his latest success at the Commonwealth Games in Glasgow, signed autographs and chatted to people who were visiting the Park for the annual celebration of the Paralympic movement in the UK. The day was something of a precursor to Trailblazers’ plans to talk to various disability sports organisations and leading figures in the world of disability sports to see what action can be taken to improve the level of participation of disabled people across the country. If you’d like to find out more about the sports campaign, or about getting involved in Trailblazers, a network of young disabled people who campaign on issues that are important to them, do get in touch on 020 7803 4800 or trailblazers@muscular-dystrophy.org
Supporting local families Our Big Lottery-funded Advocacy Ambassador programme has been gaining momentum since it started earlier this year. Not only have more people joined the network (there are now 28 Advocacy Ambassadors across England), but they’ve also been successful in getting support for local families. West Midlands Ambassador, Sarah Green, whose son Bradley (10) has Duchenne muscular dystrophy, recently supported a local family applying to extend their home. Cameron has congenital myopathy and his mum, Nikola, approached Sarah for help in applying to have their family home adapted to suit his changing needs. Sarah, who knew what the family was going through, offered helpful advice and understanding. Nikola and her family were delighted to get the go-ahead for work on Cameron’s new bedroom and the family’s living space. “Sarah has been so helpful. She’s very passionate about the cause and offering the right help and support to other families, using her own experiences as a parent of a child with Duchenne muscular dystrophy.” “It was my pleasure helping Nikki and Cameron. I wanted to help them work out any problems and to make sure they didn’t go through what I went through when adapting our home. It was important to me to make sure the home adaptation plan was appropriate to them as a family. “I enjoy being an Advocacy Ambassador for the West Midlands and am always willing to help any families,” said Sarah. If you’d like to speak to an Advocacy Ambassador, or find out how they can support you, please get in touch with Maddy on 020 7803 4845 or ambassadors@muscular-dystrophy.org
(l to r), Jack Rayner (volunteer), Shaunie McMaster (volunteer), James Lee (Trailblazer Campaigns Officer), Ollie Hynd, Shivani Handa (Information and Advocacy Officer)
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What do you think? We’d love to hear from you and to fill this page with your stories. Send us your good news, your frustrations, your story ideas, as well as any news you’d like to share with our readers. Martin shines at charity awards
A plucky and well-accomplished teenager from Colchester made the most of meeting Prince Harry at a recent awards ceremony in London. He handed the prince a DVD to help him with babysitting duties when the new royal baby arrives. Named Inspirational Young Person for his positive attitude, at the WellChild Awards ceremony in September, Martin Bennett (14) also gave Prince Harry some babysitting tips. “I thought with two of them to babysit, he might need some extra help, so I gave him a DVD he could stick on to distract one of them,” Martin said. “He thought it was a great idea. “I also told him a joke, but I think it’s one for his Army mates, and not for his granny.” Prince Harry has been the patron of the WellChild charity since 2007, and is guest of honour at its annual event. The awards ceremony, now in its tenth year, recognises the courage of children and young people living with serious illnesses, as well as the dedicated families, nurses and doctors who care for them.
In a heartfelt speech, the Prince said, “I would like to congratulate each of the award winners – your stories are moving beyond words and remind us all of how fantastic you all are. “You are an example to us all – we can learn a great deal from your strength of character, resolve and humour in facing down challenges every day.” Martin has spinal muscular atrophy (SMA) type 2, and has never been able to walk. He got his first powered wheelchair at the age of four and has been a member of the charity’s Colchester Branch since he was six. He has regularly raised funds for the charity through store collections, a table top sale and special fundraisers with the local Tesco store. Over the past two years Martin has also taken part in a new drugs trial at Great Ormond Street Hospital, and had major surgery on his spine. After surgery, he returned to school part-time after an eight-week break and entered the Junior Maths Challenge. He won a gold award for the second year running, coming top of his year group at his school naturally. He is also a student governor at school.
Dear Target MD
Just a little note to say I really appreciate the Muscular Dystrophy Campaign getting involved in my case. Thank you so much for all of your help. It’s comforting to know there are people like yourselves to help people in my situation. Many thanks Ellie
Looking ahead The next edition of Target MD, due out at the end of January 2015, will focus on our services for newlydiagnosed families. As always, we’ll introduce you to some of the outstanding families we work with, and feature our latest news, features and updates that keep you, our supporters, in the spotlight. People affected by muscle-wasting conditions are at the heart of everything we at the Muscular Dystrophy Campaign do. We will be introducing some changes to the magazine early next year, as a result of your feedback in the reader survey. Please watch this space for next steps.
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
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Photograph: courtesy of Mansfield Chad
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Another season begins International Powerchair Football filled the post-season this summer, with the first ever European Powerchair Football Association (EPFA) Cup taking place in Limerick, Ireland. Six nations took part: England, Ireland, France, Belgium, Denmark and Switzerland over three intense days of action. Fans were treated to some great games with lots of goals and exciting play throughout the competition. In their first tournament as an FA England team, the squad made their way to the final, where they lost to a strong French side. The runnersup spot was an excellent result for the national team and they will no doubt look to build on this for the 2015 World Cup. Back on home soil, the WFA National League began its ninth season recently, with teams across both divisions ready to do battle once again. Last season was the biggest in England to date, with 24 teams taking part in the National League competition. Northern Thunder took the Premiership crown for the second season running, winning all 22 of their games. They will be aiming to retain their championship title for a third season but will have Aspire PFC and Sporting Club Albion, who finished second and third respectively, hot on their heels.
At the other end, league struggles saw Celtic Storm, Reading and Norwich City make their exit from the Premiership. In the Championship division, Nottingham Forest took the league crown, winning 17 of their 22 games. They finished ahead of Evergreen PFC who claimed the runners-up spot, and Manchester United PFC finished third. United secured promotion when they beat Norwich City in their end of season play-off game. All three teams will certainly be looking forward to the step up in competition and will endeavour to retain their Premiership status. The league also welcomes three new teams to the WFA Championship: Bolton Rockets, Everton PFC and East Riding Electric Eels are all taking the leap from their respective regional league into the National League competition. Aspire PFC took some consolation finishing as runners-up in the Premiership by claiming the WFA Cup. Winning the cup for the third time, they edged out Northern Thunder 1-0 in the final, thanks to Jordan Williams’ goal. The WFA have also welcomed a new staff member into post. Niamh O’Reilly has taken on a voluntary role as Fundraising Officer, tasked with raising much-needed funds and awareness for Powerchair football. Coupled with this, the WFA has recently established a Virgin Money Giving page. Any donations received are used for Powerchair football activity, ensuring disabled people can continue to access sport. For more information on both areas, please visit the Wheelchair Football Association’s website.
On the web www.thewfa.org.uk
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Get involved We have a wide range of fundraising events planned for 2014 and 2015. We’d love you to join in! www.muscular-dystrophy.org/events
Talking of Christmas... Come and celebrate Christmas with us this year. You’ll see we’ve got some ‘crackers’ lined up for you! We have a range of lovely cards and gifts you can send to your loved ones this Christmas. And when you shop with us, you’ll also be giving the gift of hope to the thousands of individuals and families we support across the UK, who are affected by muscle-wasting conditions. Have a look at our online shop where you can buy our high-quality, beautifully designed Christmas cards and gifts. From wise men to geese, choirs to reindeer, there are cards to suit every taste. And gifts that will make you – and your friends and family – smile. Visit our online shop or call our order line on 01736 448290 Monday to Friday, 9am to 5pm.
Don your santa suit for a Santa Fun Run near you If you have a Santa suit just waiting to be dusted off and brought out for another season, why not sign up for one of our Santa Runs? This ever-popular run takes place in the streets of many cities across the UK and is a perfect way for you to have fun, keep fit and raise some vital funds too. Contact our fundraising team on 0845 872 9058 or volunteerfundraising@muscular-dystrophy.org to find out more. Visit our website to find out more about what we’ve got on offer for you this Christmas. www.muscular-dystrophy.org/christmas
Get into the Spirit of Christmas What better way to welcome in the festive season than by coming to one of our wonderful Spirit of Christmas concerts across the UK. We have a range of magical evenings of candlelit carols and festive readings in early December across the UK. Not only will you be guaranteed to have a fun and festive evening, but you’ll also help spread the Christmas cheer to families affected by muscle-wasting conditions. Come and join us on Wednesday 3 December at the Sheldonian Theatre for Oxford’s 2014 Spirit of Christmas carol concert. You’ll enjoy a magical evening of festive carols, interspersed with reflective and amusing readings by stars of stage and screen. We also have Spirit of Christmas concerts in the following regions: • Gloucester – 3 December • Hyndland (Glasgow) – 5 December • Writtle - 11 December • Henley – 11 December • Lanarkshire – 17 December • Clapham - 17 December
Gogglebox skydive Closer magazine and Heat world (online) ran stories in September on supporter Hayley Lloyd who completed a skydive, with Gogglebox and Celebrity Big Brother star, George Gilbey. Hayley’s son, Tommy, has limb girdle muscular dystrophy. BBC Radio Coventry & Warwickshire spoke with both Hayley and George on-air about the skydive, which was a great success and raised over £3,000 for the charity. Reality TV personality, Dee Kelly (George’s fellow Big Brother housemate) also turned up on the day to show her support.
Sir Alex Ferguson and Roy Hodgson take us to the trading floor We were thrilled to have been selected from hundreds of charities to take part in BGC’s annual Charity Day on 11 September in Canary Wharf in London. Sir Alex Ferguson and Roy Hodgson represented us on the trading floor in what was a wonderful, festive and uplifting day for the 25 charities invited. Every year BGC’s offices worldwide commemorate the 658 friends and colleagues who lost their lives in the September 11 2001 attacks in New York, by distributing 100 percent of their global revenues to charities on this, their annual Charity Day. Celebrities, representing the chosen charities, join licensed brokers on the trading floor to conduct transactions with clients. The Hill, Fernandes, Jaworski and Lloyd families came along to the day, where they enjoyed not only the themed games and activities but also the opportunity to meet many of the celebrities. On behalf of the charity and the families we represent, we’d like to say a huge thank you to BGC for selecting us to take part in their charity day.
Microscope Ball 2014
Tickets for all our Christmas events are available from our online store at On Thursday 16 October over 700 people from the www.muscular-dystrophy.org/shop If you’d like to find out more, do get in touch with us on 0845 872 9058 or commercial property sector got into the carnival spirit at our 31st Microscope Ball in October. Host Anton Du volunteerfundraising@muscular-dystrophy.org Beke ensured people not only took to the dance floor with a flourish but encouraged them to dig deep, raising an astonishing £270k for the charity. Huge thanks to the Microscope Ball Committee, without whose enthusiasm and support the event wouldn’t be possible.
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Great North Run
Cambridge Town and Gown 10k
Congratulations to the 147 #TeamOrange runners who took on the Great North Run for us in warm Newcastle sunshine on Sunday 7 September. It was a wonderful day and our runners are set to have raised over £75,000 for us.
The Great North Run is known as the most popular and prestigious half-marathon in the world. If you’d like to register your interest in joining our bright and wonderful #TeamOrange in 2015, and run the race for us, please get in touch with our fundraising team on 0845 872 9058 or volunteerfundraising@musculardystrophy.org.
On Sunday 12 October 2014, over 1,000 runners helped us to turn Cambridge orange in our third Muscular Dystrophy Campaign Town and Gown 10k. We’d like to say a huge thank you to everyone who ran in the race, volunteered and cheered from the side lines on the day, not forgetting our outstanding race starter, Oscar Devenish. Thanks to the hard work and dedication of the amazing runners, over £40k was raised to help us continue to fund groundbreaking research and improve the lives of everyone affected by muscle-wasting conditions.
Registration fee – £49 Sponsorship – £399
RideLondon 100
Virgin London Marathon Sunday 26 April
Even Hurricane Bertha couldn’t stop #TeamOrange from taking on RideLondon-Surrey on Sunday 10 August. Our intrepid team of 22 took to the wet and windy streets of London and Surrey in the worst cycling conditions possible, and have currently raised £24.5k for the charity, with money still coming in. Our huge thanks to you all. If you’d like to sign up for next year’s event – and we’re all hoping for better weather – please get in touch with our events team on 020 7803 4828.
A selection of
#TeamOrange 2015 events
Make Today Count 27 February – 1 March
Join #TeamOrange with you r ballot place.
Durham Town and Gown 10k Sunday 8 March
Registration fee – £10
Oxford Town and Gown 10k and 3k Junior Run Sunday 10 May*
Sponsorship – £50
*sign up in December and pay 2014 registration fee
Edinburgh Marathon Festival Day 1 30 May
Junior race Registration – £5 5k Registration – £10 Sponsorship – £100 10k Registration – £16 Sponsorship – £100
Day 2 31 May
Edinburgh Half Marathon Registration – £27 Sponsorship – £350
Prudential RideLondon-Surr ey 100 Edinburgh Marathon Sunday 2 August Registration – £49 Sponsorship – £500 Great North Run Sunday 13 September Hairy Haggis Team Relay Himalayas trek (Nepal) Leg 1: 8.3miles, Leg 2: 5.5m iles, 17 to 27 October Leg 3: 8miles, Leg 4: 4.4m
Registration fee – £45 Sponsorship – £550 If you would like to find
iles Registration – £80 per team Sponsorship – £600
out more about any of these events, do get in touch with us on 0845 872 9058 or volunteerfundraising@ muscular-dystrophy.org
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Dear all,
Hi there, my name is Navin and I am the new Online Manager here. At the time of writing, I’ve been in post for around six weeks, so I still have plenty to learn, but I’m really enjoying it. I am excited about helping the charity grow its online presence and social engagement as well as being involved in some of the bigger digital projects. I come to the charity via the Church of England and The Southbank Centre, where I was also responsible for online and social media. I’d love to hear your thoughts on our current digital channels; what are we doing well, what could we do better? Drop me an email – my contact details are below.
Navin Motwani Online Manager
t: 020 7803 4833 e: n.motwani@muscular-dystrophy.org tw: @TargetMD f: www.facebook.com/musculardystrophycampaign
Helen Ridgway has moved on to pastures new “I have thoroughly enjoyed following so many of your achievements, challenges and conversations on social media and will miss being part of the charity. I’ll be sure to stay in touch however and will of course be #TeamOrange forever! “Many of you took part in our Move a Mile for Muscles fundraising event in August, and it was great seeing your tweets and Facebook updates about the challenges you took on. We were also delighted so many of you chose to support us by taking on the Ice Bucket Challenge. We took this on at head office, donating to both to the Muscular Dystrophy Campaign and to our friends at MND Association.”
Hello from Target Research In this final edition of Target Research for 2014, we introduce the ten new research projects for which we awarded grants this year. We will be investing more than £1m over four years into the projects that cover nine conditions including Duchenne muscular dystrophy, spinal muscular atrophy and facioscapulohumeral muscular dystrophy. All the projects were selected using our rigorous peer review process to ensure that we continue to fund only world-class research. Some of these projects have been cofunded by other charities; as well as continuing to work with the charities of the Duchenne Forum, which we established last year, we are also working closely with The SMA Trust and CMT UK and you can find more information about these newly-forged links with these organisations. Our second article features the Research Impact events that have been taking place over the summer. The events, in London and Edinburgh, highlighted the impact of our research programme and gave families the chance to go behind the scenes in a research laboratory. As ever, if you have any questions about research, or there is anything in particular you would like to see featured in Target Research, please let me know. I do hope you enjoy this edition.
Neil Bennett Editor, Target Research t: 0207 8034 813 e: research@muscular-dystrophy.org tw: @ResearchMDC
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