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Target MD Issue 1 of 4 2012

School days must read

Choices and challenges in finding the best school for your child

Come and play Boccia join in

Meet the ParalympicsGB hopefuls

Trailblazers news Education, advocacy, fundraising and life stories All inside Research news • Information Standard Award • The President’s Awards • Get fit in 2012 • Campaigning news


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www.muscular-dystrophy.org

From the CEO’s desk At the start of 2012, looking back on the year just gone, one of the highlights for me was the major progress we made in research. Last July, the results of the exon skipping trial were published in The Lancet and they showed outstanding promise. It seems we can really anticipate a future when there will be effective treatments for Duchenne muscular dystrophy and other related conditions. This is extremely encouraging progress given all our efforts to raise funds for research. We desperately need further funds to drive research forward, of course, and I would urge all our supporters to renew their efforts to keep the momentum going. We are also pleased that we were recognised as one of the most effective charities in the country, winning the national award as Campaigning Charity of the Year 2011. The achievements of our young Trailblazers were celebrated with the Outstanding Recognition award from the UK Youth Hearing Unheard Voices campaign in November and then in December, we were awarded the national Information Standard kite mark for our information service. As a relatively small charity that has won other awards and commendations over the last few years, our supporters can be confident we will make very good use of every pound raised. We are determined to maintain the momentum in research in 2012. At long last, there is genuine optimism that we are getting closer to effective treatments being available to children and adults. There is still much to do and fundraising will be vital in generating the resources to drive this research forward. We will continue to provide grants for wheelchairs and equipment and you can read in the magazine about the progress we are making in campaigning and in education. Research to beat muscular dystrophy and related conditions, however, remains our top priority. We are pleased to have such dedicated and committed supporters who share our determination and I am sure that together we can make 2012 another year in which we make further significant progress. Finally, I am always delighted to be able to attend meetings of branches and Muscle Groups and join in other events around the country, so please get in touch if you would like me to join you. Working together, we will win the fight against muscular dystrophy and related conditions.

Robert Meadowcroft Chief Executive

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08

The learning curve

Schools, universities and beyond

Contents 19

20

26

Sharon’s smile

26

Mark Chapman’s full and independent life

29

Meet the Boccia boys

20

News

President’s Award winners - honouring our supporters at the National Conference

23

Invest to save in Wales

25

Trailblazers go to Number 10

06 29

Features

Regular

Letters - write and tell us what you think

17

The best of the web

35

Above and beyond - fabulous Christmas fundraisers


www.muscular-dystrophy.org

Hello, Happy New Year to you all! 2012 has been talked about for a number of years as the Olympic and Paralympic year, and it’s now upon us. Whatever this year holds for you, the team at Target MD and I would like to wish you a very good one. This edition of Target MD has the theme of education at its heart. We are now working more closely and formally with schools; later this month we launch the Parents Education Network (an online support network for parents to ensure their children are getting the best education experience possible), and a programme of specialist training for education professionals is being offered throughout the country over the next 12 months. We know that it can be a challenge to choose the best school for your child, when he or she has changing needs. We visited three schools in England – one mainstream primary school, one special school and one mainstream secondary school – and met staff members, pupils and some parents to find out what it is that makes the school a good place to be. Mathy and Zoë also share their experiences of transition into university education and beyond. As we stand on the doorstep of a big sporting year, we also feature four professional, elite athletes who are set to represent ParalympicsGB in Boccia this year. We also offer you some excellent opportunities to get fit in 2012 and raise funds for us at the same time! As you read further about our campaigns and research, you’ll see that we are passionate about fighting muscular dystrophy on every front. We can’t do this without your support. If you’d like to donate towards our vital work, please contact us on 0845 872 9058. If you haven’t already subscribed to have Target MD delivered to your home and would like to subscribe to the magazine, please have a look at the subscription information on page 28. The magazine for supporters of the Muscular Dystrophy Campaign , written and produced entirely in-house.

As always, the magazine is shaped by you, our readers, and your feedback is vital. If you have any ideas for future articles or issues that you’d like to see in the magazine, please do get in touch with me.

Editor Ruth Martin Art director Deborah Waters

I’d love to hear from you.

targetmd@muscular-dystrophy.org Muscular Dystrophy Campaign 61 Southwark Street London SE1 0HL t: 020 7803 4800 e: hello@muscular-dystrophy.org w: www.muscular-dystrophy.org Disclaimer 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 Printed on PEFC paper, produced at a mill that is certified with the ISO14001 environmental management standard Enclosed into a bio-degradeable polybag

Ruth Martin

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

Interact with us and more than 7,500 fans on our Facebook page at: www.facebook.com/musculardystrophycampaign For up-to-the-minute updates on all areas of our work, follow us on Twitter @TargetMD

About the Muscular Dystrophy Campaign

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscular dystrophy and related 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.

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Letters What do you think? Write to us...

November

2011

Leisure activ ities Sports accessible and travel ALL INSID

Sharing a

JOIN IN

hopefuls

Campa success ign Campaigning

Ricky (my husband) took himself off to read it twice and both times he said how much it upsets him to read it.  I love the whole story and how it sums Tracy and I both up. I have sent a copy to my Auntie and Uncle in St Helena as well. I can tell you have worked so hard with the new-look magazine and have enjoyed reading it, well done you, give yourself a big pat on the back. Have a great weekend. Jane (Bloxham)

E

Keep in touch with us...

s

Powercha football ir

World Cup

WOW, what a reaction I have had from my story.  I have managed to make everybody get very emotional and upset reading it. Sent my best friend a copy and she said she was proud of me for carrying on as I do, and I was an inspiration to others who moan about the slightest thing.

rare diagnosi MUST READ

(Jane and Tracy featured on the cover of the November 2011 edition of Target MD, and their story Two in a million sisters told of their lives as manifesting carriers of Duchenne muscular dystrophy.)

I loved the new look Target MD – so modern and bang up to date.

magazine

Dear Ruth   Wow! What a surprise we have all had this morning, I love the new look magazine; I definitely prefer the mat look and the new layout, it looks more colourful and interesting to read.  The front cover is amazing (great photo) and the articles have been very, very well written. My sister and I are over the moon and will be showing mum this evening at a family meal we are having.  I cannot believe how many times we appear in the magazine and how many pages it has covered, and it has all come from one letter my sister has written.   It is a real privilege and an honour to be asked to light the first candle at the candle light service at Christ Church Cathedral on the 7th December. It will be the most amazing thing I have done in my life. There will be nine family members coming to support me on that evening and I am really looking forward to the evening. I really do hope we are able to reach the fundraising target for the Muscular Dystrophy Campaign; it is such an important moment in my life.   Target MD Thank you, Ruth and Deborah, for the wonderful work you A stor y have done. The magazine has got a great new look and of two read to take the magazine into the future, well done! sisters   Yours sincerely  Tracy (McMahon)

Hi Ruth

news • New inquiry in Northern

Ireland • Trailblazers

documentary

film • Scotlan d’s

Kite Award s

Hi to I subscribe to Target MD and think the new look is great. I am emailing old year 3 our about piece a writing in d intereste be would you see whether son Ethan. He has been diagnosed with congenital fibre type disproportion rare with the faulty gene being ACTA 1. We have been told that this is a very n. We condition and we have yet to find anybody else with this same mutatio man have had many highs and lows with Ethan who is a very cheeky young with a great sense of humour. with We would like to share our story in the hope that it may strike a chord ns conditio muscle rarer the of some to n attentio bring to and , other families share which do not seem to receive much press. It would be great if we could our experience with your readers. I look forward to hearing from you. Mel Lane (Watch this space for a story about Ethan and his family in the April 2012 edition of Target MD.)

We’d love to hear from you and would love 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. Here’s how you can get in touch with us: via Twitter @TargetMD or @RuthWriter, write to us on our Facebook page or at TalkMD, or write to the Editor of Target MD at 61 Southwark Street, London SE1 0HL or at targetmd@muscular-dystrophy.org Looking ahead Join us for the next edition of Target MD, due out in April 2012. In the brightness of spring, we’ll focus on the build-up to the Olympics and Paralympics, with our usual news, features and updates and again with you, our supporters, in the spotlight. As you know, people with muscular dystrophy and related conditions, together with their families and carers, are at the heart of everything we do.


Email: jennyf@crelling.com Website: www.crelling.com


Feature

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In late November and early December last year, David Moore-Crouch (Information and Advocacy Officer) and Ruth Martin (Publications and Communications Manager) visited three schools around England. With the launch of the Parents’ Education Network (PEN) (see page 12), David’s interest was to share information of this new network and build partnerships with schools. For Ruth, her focus was to find out what each of the schools – both mainstream and special needs specific – had to offer disabled young people and children to share with readers of the magazine. This edition of Target MD features education as its central theme. For many parents of school age children, it can be difficult to make a choice between mainstream and special needs schools. We trust that the information in this extensive feature will be helpful to our readers, will give you an idea of what is on offer at these schools around the country, and if you need any further information or clarification, please do get in touch with us at information@muscular-dystrophy.org or 020 7803 4800. Ruth: “What was clear to me in each school, was the value of the head teacher’s philosophy and ethos, and how – when those are open and understanding of a wide variety of needs and aspirations – that creates a ripple effect right through the school. You see it in the faces of the pupils, and you hear it from the perspective of the parents. It’s not about words; it’s about actions.” David: “Every child is entitled to an inclusive education. This mantra was evidently at the heart of all of the schools we visited. Fostering this ethos has to start at the top with strong, passionate leadership. Given the chance, this ethos can grow to encompass the whole school community creating a positive and fulfilling environment where it’s not about what you can’t do; it’s about what you can do.”

I

Meet Jack

n late November, we had a meeting with Jack Layton. He’s five and he’s in year one at Wickham Church of England Primary School, in a quiet corner of Hampshire. The photo of him on the opposite page shows what he looks like when he says ‘sausages’, which he always says when he’s having his photo taken.

Jack’s condition

Becker muscular dystrophy Jack has Becker muscular dystrophy. The muscular dystrophies are a group of genetic disorders, which cause muscle weakness. The Becker type was first recognised in 1956 and is now known to be a milder variant of the better known Duchenne muscular dystrophy. Becker muscular dystrophy is generally slowly progressive and affects only males. A fault in a particular gene (dystrophin) carried on the X chromosome leads to the formation of a faulty protein in muscle fibres. This protein, also called dystrophin, is absent or severely abnormal in Duchenne muscular dystrophy. In Becker muscular dystrophy, a milder fault makes the dystrophin molecule smaller (or occasionally larger) or less abundant than normal. When dystrophin is abnormal the muscle fibres gradually break down and the muscles slowly become weaker. These dystrophin abnormalities in muscle provide a very good test for the diagnosis of Becker muscular dystrophy.

We met with Jack in the school library and sat around a table together. Jack really likes school. He told us about school and what he likes doing most: ‘playing’. His second favourite thing is ‘golden time’ (extra play-time when your behaviour has been ‘super’). A few children walked past the table and waved hello to Jack. He and his class were rehearsing for the nativity play in which he was going to be the innkeeper. He also told us he has a three-wheeler bike, which he rides to school from his home just across the road. When we finished our meeting, Jack went skipping off back to his classroom and joined the line to go into the hall for their next activity of the day.


www.muscular-dystrophy.org

Jack has Becker muscular dystrophy. He was diagnosed with the muscle-wasting condition last year, when he was four. His three-wheeler bike helps him get to school and to keep up with his friends and classmates when they visit the park, and in the not too distant future, he will be getting his first wheelchair to use when he’s feeling tired. Wickham Primary is a great place for him to be; all of his current and future needs have been considered and prepared for.

The school

Walking into the school, you immediately get a sense of community and school togetherness. It is this ethos that has made Jack’s first year at school so positive and got his mum, Julie-Anne, bringing the school to the Muscular Dystrophy Campaign’s attention. Head teacher, Miss Maria Ackland, is the one behind the changes. In her short tenure, Miss Ackland has managed to create an encouraging and fulfilling school environment where every child matters. Miss Ackland has been at the school for two years and has worked hard to create an environment of understanding and mutual respect among the school’s

Wickham Church of England Primary School, Fareham www.wickham-primary.co.uk

The school was founded by St Nicholas Church and was initially situated next to the Church site. The school moved to its current position in 1969 and caters for children from four to 11 years, drawn from the village of Wickham and the surrounding community. The school has a warm, family atmosphere where parents, the Church and the village community are encouraged to become involved fully in all events and activities. The School’s vision is to be an excellent school where everyone is valued and all children are inspired and enabled to become successful, lifelong learners who achieve their full potential; to foster an understanding and tolerance of all faiths and cultures within their caring Christian community and to enable all their children to become self-motivated, responsible citizens, preparing them for a healthy fulfilling life.

178 pupils and teachers. Her hard work has recently been rewarded: at a recent ceremony, the school was announced runner-up in The News’ annual ‘We Can Do It’ awards for making a contribution to society for its fundraising event for the Jeans for Genes campaign. The news article commended, in particular, the caring nature of the children in the school, not to mention the £178 they raised for the campaign.

“Our school is like one big family,” Miss Ackland said. “All the children and families know each other and there is a lot of community support.” Jack is the first child at the school with muscular dystrophy. After his time at a local Montessori pre-school, and his subsequent diagnosis with Becker muscular dystrophy, Jack’s mum, JulieAnne, contacted Wickham Primary and, with the school’s assistance, completed the statementing* process in time for Jack’s arrival at the school. Jack’s mum, Julie-Anne, said she was aware of the struggles that some parents can have when organising their children’s statements and getting their voices heard. “I wanted Jack to have the same opportunity as everybody else and I wanted Jack to go to a mainstream school. “When I walked into Wickham Primary School and met Miss Ackland, my mind was immediately put at rest. Miss Ackland treats every single child the same way and has the same expectation that each child will be successful. In such a supportive environment, Jack is very happy and the happier and better he does, the better I feel,” Julie-Anne said. With support from the local authority, the school had some building work done ahead of Jack’s first day, to make it wheelchair-friendly, and to make the bathrooms more accessible. The school is going to continue this work to ensure that, as Jack’s needs change, he will be able to access all facilities and activities at the school. Jack is allocated time with a Learning Support Assistant (LSA) each morning and afternoon, and the school accesses physiotherapy and occupational therapy for him, through the Winchester

Health Authority. Miss Ackland said the health authority was really helpful and supplied everything Jack might need, and is generous with advice and support for his changing needs. It has been a learning experience for the school, as much as it has been for Jack and his family. With the important adaptations having been made to the school buildings, it is likely to pave the way for other children with similar needs to go to the school. “The greatest difference we can make is to help parents not to feel anxious about their children’s needs at school,” said Miss Ackland. “Jack has settled into school very well, he is happy and everything has gone smoothly. It’s all about building confidence. “We are inclusive. Jack is part of everything we do at the school from visiting church, to going on local outings,” Miss Ackland said. Wickham’s head teacher is passionate about raising awareness and making sure all the children understand their similarities and differences. “I believe that every child deserves to be successful and that is something that has to be in the heart of the school. We won’t accept second best for our children,” she said. *A statement of special educational needs (SEN) sets out your child’s needs and the help they should have. It is reviewed annually (www.directgov.com).

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Feature

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The awesome threesome from the Wirral

J

ust as winter hit the country, it was warming to meet three inspiring brothers who are proving that their condition is no barrier to achieving excellence at school. Tom, Dan and Sam Lloyd (pictured right) who attend Mosslands School on the Wirral, all have Duchenne muscular dystrophy.

The brothers first came to the attention of the charity when Dan and Sam, 16year old twins, achieved outstanding GCSE results. Between them the brothers chalked up 19 GCSEs, eight at A* to C grade. The success isn’t limited to the twins though, with Tom (13) and another boy with the condition, being top performers in their years. The high flyers are very modest about their achievements, placing a lot of their success at the feet of their parents and the school. For Allison Carruthers, SEN Manager at the school, it came as quite a shock to learn that the school was going to be catering for boys with Duchenne muscular dystrophy just as she was starting at the school five years ago. It was the first time the school had been asked to cater for children with a neuromuscular condition. Despite the initial apprehension, Allison took to the task of ensuring the boys had an inclusive and holistic education with vigour. Allison pinpoints the importance of being proactive as the crucial part of managing the boys’ needs. Adaptations were made to school premises prior to the boys’ arrival to ensure accessibility, learning support assistants were arranged and regular communication with parents was initiated. By being proactive and fostering a relationship with the boys’ parents, Allison and her team were able to create a positive school environment that would allow the boys to flourish. The results certainly prove that it’s working. The boys were born in Arrowe Park Hospital in Birkenhead, and all went to Poulton Primary School, with Tom also having had a short spell at Mount Primary, before starting at Mosslands School in year seven. The family lives in New Brighton and the boys take special transport to school every day. Sam and Dan join in the schoolboy banter on the bus, often discussing the latest

performance of their local Premiere League football team: Liverpool. Tom is mad about video games and usually has his nose stuck in his latest DS game. All three boys said that people at school were kind and friendly, and everyone goes out of their way to help them, for example by putting their lunch boxes away, helping them in their chairs or opening doors for them. Their LSAs help them in their classrooms, as required, although being independent is important to all of the boys and they prefer to do as much as they can for themselves. Sam and Dan, being seniors at the school, enjoy the privilege of having passes, which give them free access to the lifts and enables them to get themselves around the school as much as possible.

physiotherapy or hydrotherapy at Claire House. They all love being in the water, as it relaxes them and releases tension in their muscles. “Not being able to walk any more, it’s great to be more mobile in the water and we can walk around the pool,” said Sam. When it comes to PE lessons at school, Dan and Sam value the opportunity they have to play football with their classmates. They each man a goal seated on the floor, supported by another pupil in the class, and use Emergency Lifting Cushions (ELK) to be lifted back to their chairs when finished.

“Someone said that we have more access to the school than the headmaster himself!” Dan said.

[The ELK is operated by low air pressure using the Airflo power source, and, when the game is over, the cushion inflates to the perfect height to allow them to get into their manual wheelchairs from there.]

Chris, the boys’ dad, said that before the boys started at Mosslands School, their local occupational therapist worked with the school to ensure they had all the equipment they would need for school.

“As long as we can keep doing this for ourselves, and being able to lift our arms to save goals, we will carry on playing football at school,” said Dan, with his arms held high in the air.

“The staff members are fantastic and I can’t say enough about the school’s support systems. Whatever the boys need, someone is always there to help them,” Chris said.

“We have always tried to defy the doctors and break all the rules,” he beamed, proudly.

“Dan and Sam really wanted to stay on into the sixth form, and are keen to go in every day. Honestly, the school has been so helpful with our boys,” he said. Sam, the older twin by half an hour, said they try and make the most of the ability they have to use their legs and arms. Every week they all go for either

Tom plays Boccia, as well as ‘dodgeball’ and ‘medic’ during his PE lessons. They all play cricket and baseball on the Wii at school, and play football at home, with their carer. In their spare time, the boys like to go out and do fun things such as bowling, or going to the movies. Fishing is another pastime they enjoy. We asked them what they would say to a boy who had recently been diagnosed


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with Duchenne muscular dystrophy, and Sam answered immediately in words he has clearly heard and spoken often: “Don’t worry. Just try and keep your head up, do the best for yourself. Try and push yourself to do as much as you can for as long as you can.” “I’d say just try your best,” said Tom. The three boys said they pushed themselves to keep going as long as possible. The twins walked until they were 13½, and Tom was in a wheelchair a little younger. “As long as you have a positive mental mindset, it really helps. 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.”

Mosslands School

Mosslands School is part of the Wirral Local Education Authority and falls within the Merseyside Excellence in Cities area, identified by the government as in need of particular financial support. Neither a leafy suburb, nor an inner city, but somewhere between the two.

Mosslands is a successful community school which provides a truly comprehensive education for some 1,032 boys aged from 11 to 19 and which achieves excellent results at GCSE and post 16. The large Sixth Form of over 240 offers places to girls, and prides itself on the range and quality of its academic and vocational provision. On average, over 70 percent of our Upper Sixth leavers progress to higher education each year. An innovative school, their College/Work Experience programme for 15-year-olds provides an alternative to the traditional GCSE provision for appropriate youngsters in this age group. Mosslands is well regarded also for its provision for pupils with special educational needs. Currently over 230 pupils with varying special needs receive an education which is appropriate and helps them to achieve to the best of their abilities.

“We have always tried to defy the doctors and break all the rules,” Dan beamed, proudly. It was that infectiously positive attitude that shone through when the Lloyd family was featured in a film on the X Factor results show in November. Claire House, the hospice and respite centre where they go, was chosen as a beneficiary of funds raised by the X Factor’s charity single, and the centre nominated the boys’ family to be featured in a short film to be shown on the night. The boys – all keen X Factor fans – were thrilled to be nominated to be part of one of their favourite shows. Not only did their film feature in the results show, but they got to travel to London to be in the audience at the studio and go to the after-party and meet many of their heroes. They got two kisses on their cheeks from their favourite judge, Tulisa, and enjoyed seeing and meeting people they’d only previously seen on the small screen. The family was filmed extensively, and the four-minute clip that resulted showed a tight-knit, loving and caring family made up of mum Helen, dad Chris, and three strong, determined and positive young men at its heart. The 13 million X Factorviewing public was riveted as the family shared a glimpse of what it’s like living with Duchenne muscular dystrophy.

“I think we brought the nation to tears,” said Sam. “People were thinking, ‘look at those boys, look how well they have done’”, he said. Yes, Sam, Dan and Tom, they were. They were indeed.

On the web Mosslands School: www.mosslands.co.uk X Factor 2011 charity film: www.bit.ly/tagUO9 Claire House: www.claire-house.org.uk ELK emergency lifting cushion: www.bit.ly/tWZDvi

Developments in education In order to raise awareness of muscular dystrophy and related neuromuscular conditions, and to ensure schoolchildren and their families have access to the most appropriate specialist healthcare and information, the Muscular Dystrophy Campaign has launched a series of one-day training workshops. Aimed at all professionals working in education, who support children with these conditions, the workshops will provide an opportunity to meet and work with peers, and will ensure that school professionals understand the problems faced by children with muscular dystrophy and related conditions and learn how best to support the child and his or her family.

The regional programme of training events will be facilitated by a team of learning and behaviour specialists with a range of backgrounds and experience in education, who are also parents and advocates of children with special educational needs and/or disabilities. Also involved will be regional NHS Neuromuscular Care Advisors (NCAs), who are qualified health or social care professionals based in hospitals around the country who work closely with specialist staff in muscle clinics. These NCAs have experience and knowledge of working with children, of all ages, who are affected by neuromuscular conditions. The workshops will provide a general overview of muscular dystrophy and how children are affected by these conditions, specifically in terms of learning difficulties, behavioural problems and solutions. Dates for these workshops in 2012 include: • 6 March (North West) • 13 March (South West) • 15 May (Yorkshire) • 22 May (East Midlands). If you’d like to book or find out more about these workshops, do get in touch with Lyn Inman, Director of Education at the Muscular Dystrophy Campaign on 01132 301313 or email lyni@muscular-dystrophy.org

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Feature

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V

Young gentlemen in Kent

alence School and Specialist Sports College in Kent, is a school that takes your breath away. Not only because of its physical beauty, but also because of the school experience that it offers its students. Nestled in the picturesque countryside, you’ll find a school reminiscent of Hogwarts, both in appearance and because something magical is going on behind the walls.

We gathered in the music room and met with a future astronomer, IT technician, Paralympian, designer/photographer,

cameraman and artist. Liam, Jake, Michael, Tom, Josh P and Josh (pictured left to right, above) all have big dreams and ambitions for their future careers. All of them love sport – which is endlessly on offer at Valence – and all of them have Duchenne muscular dystrophy. They are six of nine boys at the school with this condition; for a condition that has such a wide geographical spread, this is unique. And this uniqueness is matched by the special experience the boys receive at the school. The six took time out of their busy schedules to tell us what makes Valence School and Specialist Sports College a great place to be.

Bringing parents together As part of our drive to ensure parents of schoolchildren get the support they need, and can access peer-to-peer support from parents facing similar situations, we are launching a new online community for parents dubbed the Parents Education Network (PEN). PEN, being launched in late January 2012, is aimed at getting parents with a child with a neuromuscular condition talking with other parents about educational needs, to make sure their child is getting the best possible educational experience. Phillippa Farrant, parent, trustee of the Muscular Dystrophy Campaign and head of the Duchenne Family Support Group, has thrown her weight behind the project and the support it will bring families. She said, “The education system is a minefield and it can be tricky to find the right solutions for a child with a neuromuscular condition. Exchanging information with other parents can be invaluable as well as a real relief to families to know that they are not the only people struggling with the same situation.” Alongside support from other parents, PEN will also offer support and advice from schools and educational experts, such as Ruth Bryan, a Special Educational Needs (SEN) teacher with 25 years’ experience. The information team is currently in the process of developing a comprehensive booklet – covering issues such as statements, choosing the right school and tribunal information – which will be available to all parents who join PEN. If you are a parent and would like to offer your support and advice on PEN, or would like more information about it, please contact David Moore-Crouch at the Muscular Dystrophy Campaign Information Team on 020 7803 4800 or information@muscular-dystrophy.org

The first thing the young men told us was of the opportunity to play sport at school. Many of them, such as Tom (17), play powerchair football and, in addition to local training, they travel to Kettering and Nottingham to play in league matches there. Michael (19) plays Boccia almost every day and his goal is to represent ParalympicsGB at the 2016 Olympics in Brazil. The young sportsmen also enjoy a wide range of specialist healthcare facilities on-site at school, such as weekly sessions in the school’s indoor heated swimming pool or hydrotherapy pools. They all commented on the welcome chance to be out of their wheelchairs and to move and float in the relative freedom of the soothing warm water. Jake (13) said he really enjoyed swimming in the big pool with his friends. When we first saw Josh (14), he was in the physiotherapy room, doing one of his twice-daily walking programmes in KAFOs*, with the on-site NHS physiotherapy team headed by Nicola Burnett. In addition to regular hydrotherapy and physiotherapy from the on-site NHS team, they all have regular access to a cough assist machine and other immediate health interventions. The school has fostered relationships with Evelina Children’s Hospital and the Lane Fox Unit, which allows the school to hold consultant appointments on-site while also providing 24-hour support for the boys. Students have weekly access to a Keyworker, to discuss their needs at school for the week ahead, and they are offered support to access courses in other school settings, which are not on offer at Valence. All of the six young men we met


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are in residence at the school, and all go home at weekends to their families. Some of the boys, such as Josh P (16), make use of the respite facilities on offer every second weekend at the school. It was clear by the way the boys spoke of their hopes and dreams that independence and friendship are at the centre of what Valence does. They all enjoy the opportunity they get to live as independently as possible in their homes away from home: a bungalow that houses five or six youngsters. They commented that all of the staff at the school are very friendly and helpful, and their active promotion of independence makes life a lot easier for each of the pupils.

“Whatever we do for them, they do so much for themselves, in support, friendship, and caring for each other,” said Head of the school, Roland Gooding. In his 20th year as Head, Roland said he’s constantly amazed at the courage,

About the school

Valence School is a Kent County Special School and Sports College, in Westerham. The school can cater for up to 54 residential pupils and up to 50 day pupils and, with travelling distance, usual numbers are between 85 and 90. Valence School has always catered for pupils who have physical disabilities but pupils attending the school now have much more complex and severe physical and medical needs and require a range of specialist services and provisions. Teaching has to be carefully matched to the learning and communication needs of every child as well as ensuring their health, social/ emotional and other needs are also being fully catered for.

Parents can find out about Valence by visiting www.valenceschool.com or by contacting the School and requesting information. If a parent wants to consider Valence for their son or daughter, he or she must have a Statement of Special Educational Needs and be referred by their local authority to the Kent Local Authority, the Admissions Body for Valence School.

determination, resilience, good humour, acceptance, patience, care, compassion and insight of the young people at his school. “My passion for my work is that every day is a precious gift for living - to live for today and as often as I say to the young people to make today the best day of your life, it is so important when you are faced with such uncertainty because of your disabilities and medical needs. My passion comes from wanting them to get the most out of every moment of their lives and to this end I want Valence and indeed every school to strive for the highest standards at all times,” Roland said. Tom has been at Valence for 11 years, making him and Michael the ‘oldies’ in the school. Jake has been there for three years, Josh for four and Josh P for one. Liam (16) is the newest to Valence, having moved there from a mainstream school two months ago. He values the abundance of care that they all get at Valence and he said, with a sense of relief, “I can’t explain it, but it feels so much better to be at a school with so many people with the same condition as me. I don’t know why it is, but it does.” The school’s enduring values and mission relate to those things that really matter for students – high quality care, excellent education, personally-tailored support and opportunities to develop into confident, self-dependent and fulfilled young people. It was clear to us that these confident and self-assured young men had found their place and independence in this care-filled and peer-supportive environment. From sharing each other’s stories and filling in the gaps, to telling us fondly of their school experience; from taking us on a guided tour of the school facilities and residential areas, through to their poetic expression of freedom as they circled and moved with speed and joyous abandon around their sports hall, we knew that Valence – for these young men – was quite the best place to be. *A KAFO is a long-leg orthosis that spans the knee, the ankle and the foot in an effort to stabilise the joints and assist the muscles of the leg. www.bit.ly/saiWA0

Advocacy in action

A child’s first day of school can often be a scary experience, not only for the child but also for the parents. Possibly more so when the child has muscular dystrophy or a related neuromuscular condition, especially if the school has no experience of educating a child with the condition.

With fewer and fewer Local Education Authorities issuing statutory assessments and statements for children with Special Educational Needs (SEN), our advocacy service receives regular requests from parents struggling to get support for their children’s needs. Joshua Twine, 4, was diagnosed with Duchenne muscular dystrophy last year and is in his first year at Fairisle School in Southampton. Josh received one-to-one support at nursery, which allowed him to thrive in his environment and fully access the curriculum. Despite the progression of Josh’s condition, Southampton Council refused to offer any support for his transition into year one. Josh’s mum, Charmaine, was devastated. “I didn’t know what we had to do to get him the support he needed,” she said. Our advocacy team helped Charmaine fight the council’s decision by working with the Local Education Authority and Josh’s school. After receiving an initial letter denying Josh support, three months later Charmaine got the news that Southampton Council had reversed their decision and put in place the necessary support to meet Josh’s needs for an inclusive education. Unfortunately Charmaine’s fight is not a rare one but it highlights what can be achieved when families keep fighting and access the support that is available. If you’re struggling to get your child a SEN statement or having difficulties getting the services you’re entitled to, do contact David Moore-Crouch in our advocacy team on 020 7803 4808 or campaigns@muscular-dystrophy.org

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for the

Make today count

Muscular Dystrophy Campaign Every year 100 boys are born in the UK with Duchenne muscular dystrophy. Research is getting closer to an answer every day, so funding this work is vital to the future success of finding treatments and a cure. As 2012 is a leap year, make the extra day count with a special day of fundraising to help us raise ÂŁ30,000 towards vital research. Doing a parachute jump is one exciting option. To find out what else you can do, please contact your local volunteer fundraising manager or get in touch with us on: t: 0845 872 9058 (fundraising hotline) e: volunteerfundraising@muscular-dystrophy.org w: www.muscular-dystrophy.org/maketodaycount Registered Charity No. 205395 and Registered Scottish Charity No. SC039445


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And on to university Zoë Hallam and Mathy Selvakumaran, both 21, have been through the transition of moving from secondary school through to university education. They share stories of their education experience, as well as their respective entries into the world of work. Mathy Selvakumaran I was born in New Malden, Surrey, the younger of two daughters. I have a congenital myopathy, which means that I have weak muscles in my arms and my legs. I don’t use a wheelchair, but I find it difficult to run, jump, climb stairs, lift things, etc. I’ve had it since birth, and had various biopsies and diagnoses to explain my condition. My school career has been varied: it started with two years at a special school in England, which I recall was a really fun and supportive place. We moved to Canada and I went to two different public schools. Again, I remember having a supportive teacher at the first school who made sure I was involved in everything that the class did as a whole. Teachers like that make all the difference. I moved to a second public school in Canada, and into the Gifted and Talented Programme. I had my own classroom assistant with me for the whole day who helped me with anything I needed in the class. She encouraged me to do things I was unsure about because of my disability, like trying out for the chorus of the school production of ‘Oliver’. That ended up being my first choral experience in a career that now spans 12 years. I was bullied for a while by a boy in my class and, although it was dealt with by the class teacher, it was my first experience of bullying because of my disability. So when we moved back to England, my parents sent me to a private school. It was a smaller school

and therefore easier to have learning support; our head teacher arranged to have my classes in fairly accessible rooms in the buildings. When I first arrived they had put in special handrails everywhere especially for me. They even helped to pay for half of a special orthopaedic chair that I used in my classroom! I started at the University of Sheffield in 2008, and am currently a full-time student in my fourth and final year of Hispanic Studies and Politics. I’m hoping to continue with my education, and am currently applying for a Masters in Hispanic Studies, with the possibility of continuing on to a PhD. Originally I wanted to move into university halls and, because I had never lived on my own (my mother is my primary carer), my accommodation needed to be suitable for me to live independently. We visited one of the university’s ‘student villages’, and I was shown a spacious, disabled room, with all the adaptations and requirements that I’d need. Based on this visit, I applied for this location and provided reports from my occupational therapist (OT), detailing my requirements, which included a lift, if my room was not on the ground floor.

I ended up being placed in a room on the top floor of a three-storey building with no lift. It was clear to me that because I don’t use a wheelchair, an assumption was made that I could manage a room on the third floor, without even reading the reports from my OT. After one miserable term living in university halls, I moved back home and have commuted daily to classes since then.

The commute isn’t ideal, especially for a disabled person, and living away from campus also means I cannot socialise as easily as my friends can, and I have to plan my week well in advance to sort out my travel arrangements. My friends understand, however, and we try to socialise during class time. Most significantly, though, this experience made me reluctant to seek independent accommodation again. In 2010, I worked as an English language teaching assistant in a bilingual public school in Madrid. I really enjoyed my year. I found a great flat (slightly more expensive because it was more accessible, but my disabled student grants helped out with that), and my school was so friendly and helpful. My town was well connected to Madrid by bus, Metro and train, and most stations were fairly accessible for me. I would definitely recommend taking this kind of opportunity – even though there are lots of challenges for a disabled person to move to a foreign country. I first came across Trailblazers in 2009 after my negative experience of university and I wanted to be able to talk to other disabled people. It’s been really helpful being involved with Trailblazers and has given me so many opportunities – I’ve been on the radio and in newspapers talking about our campaigns and my ideas and opinions have gone into reports that go out to government and the public. Trailblazers is still a relatively small group of campaigners, so we can all really shape how we move forward.

Mathy’s condition

Congenital myopathy: in some muscle conditions, the problem is not with the muscle itself, but with the nerve that controls that muscle - we call this neurogenic. In other conditions, the problem is within the muscle itself - we call this myopathic, so these conditions are ‘myopathies’. The difference between the two can usually be discovered by a muscle biopsy, when examining the muscle under a microscope. When certain specific features are present we use the term dystrophic (‘dystrophy’) rather than myopathic (‘myopathy’). www.muscular-dystrophy.org

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Feature

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Zoë Hallam Since I was diagnosed with Limb Girdle Muscular Dystrophy when I was 10, the biggest hurdle for me has always been the lack of knowledge and experience exhibited by others involved in managing my care and requirements. Throughout the last ten years I’ve been a trailblazer in a literal sense: the first wheelchair user at my school, the first disabled person from my local authority to attend an out-of-area university, the first person (or so it seems) in my current workplace to require assistance on-site. What makes these situations so challenging is that the professionals who I deal with are often unable or unwilling to assist me in finding answers to the problems that inevitably crop up when trying to adapt my needs to their regulations, and vice versa. This is not through any desire to discriminate or to make my life more difficult, but more often through ignorance and sheer inflexibility. Saying this, the establishments I’ve studied at have, in themselves, been generally helpful and co-operative. My school was very supportive in aiding me in my transition between fully ambulant and wheelchair user, providing an assistant to help me get around when I needed it. The problems began when a representative from my local authority (LA) came in to assess me and immediately branded me a health and safety risk, insisting on moving and handling training for a large number of staff and the use of a (pointless, given my physical limitations) lifting inflatable cushion known as the “Elk”. I never used this cushion; the staff never utilised the training, and all that was achieved was that I was made to feel like an inconvenience. This was not the school’s fault, but rather the fault of the LA-employed jobsworth who decided I did not fit in with their guidelines. University came with similar problems. Once again the university itself was fantastic, connecting me with a current

student who was also disabled so I could find out first-hand what life as a disabled student was like, organising my assessment for Disabled Students’ Allowance in plenty of time, and adapting the accommodation to suit my needs.

Hello from Target Research Happy New Year and welcome to the first issue of Target Research for 2012, which you’ll find tucked into this edition of Target MD. With the New Year comes not only good news about advances in research and clinical trials, but also new challenges (and not just working off that extra serving of Christmas pud!).

Once again, the difficulties I faced studying away from home were almost entirely caused by the local social services, who were utterly inept when it came to anything which strayed beyond their concept of what a disabled person should say or do. The idea that I would need a different care package now that my parents would not be managing my care full-time (and in fact, that I would not be accompanied by my parents at university in the first place) seemed alien to them.

One challenge the Muscular Dystrophy Campaign has taken on for this year is to help support the setting up of patient registries (see page 4). They are important for opening up opportunities for patients to take part in clinical trials as well as being an invaluable tool for researchers planning and setting up clinical trials.

My request for an additional set of equipment for university, while retaining the equipment I had at home for the holidays was met with tutting and foot-shuffling. I started preparing for university more than nine months before I was due to start, and even then it was an uphill struggle to get social services on board with the most basic requirements.

Most of our news pages this quarter are filled with updates from the World Muscle Society congress and we also have a feature on the myotonic dystrophy research we have been funding in Professor Darren Monckton’s laboratory in Glasgow. In this article, beautifully illustrated by our in-house designer Deborah Waters, you can read out about their latest results.

This seems like a pretty bleak picture. However, for me the problem lay with the so-called support system provided by the LA. Not being allowed to do what I wanted to and what I knew I was capable of was probably the most frustrating thing. Fortunately for me, my sheer bloody-mindedness and tenacity finally wore down the obstacles that had been put in my way and I’ve now graduated, moved out of my parents’ home and am working full-time

I hope you enjoy this edition of Target Research, if you have any feedback or ideas for future issues I’d love to hear from you.

Kristina Elvidge Editor, Target Research t: 020 7803 4813 e: k.elvidge@muscular-dystrophy.org tw: twitter.com/kelvidge

Zoë’s condition

Limb girdle muscular dystrophy Muscular dystrophy is the name given to a group of inherited conditions where there is a progressive wasting and weakening of muscle. There are many different types of muscular dystrophy. One of the ways in which the different types of muscular dystrophy are distinguished is by noting the groups of muscle that are involved first. The limb-girdle group of muscular dystrophies is so called because generally they cause weakness in the shoulder and pelvic girdle, for example the big muscles around the top (proximal) part of arms and legs (hip, thigh and shoulder muscles). Usually weakness of the legs is noticed before that of the arms and usually the muscles of the face are unaffected. Limb girdle muscular dystrophies are rare conditions and they present differently in many people – even within the same family – with regard to age of onset, areas of muscle weakness, heart and respiratory involvement, rate of progression and severity.


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The best of the web

Storytelling My first choice is Abbi’s Campaign – 1 in a million. The reasons are pretty obvious: a family sharing their story, to raise awareness of Ullrich congenital muscular dystrophy and raise funds for a cause they believe in. I met Abbi’s parents, Gary and Sarah, at our National Conference. They came along to see my social media workshop and, since then, I’ve really enjoyed watching them grow their Facebook page and use it to promote their fundraising. Gary did a shark dive recently and raised a whopping £2,182. So they are the first candidates for the best of the web.

Storytelling, collaboration and sharing

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ith only four issues a year of Target MD, I’m going to have to leave a lot of stuff out – there simply is not enough space here for all the great stuff our supporters do online. So what to include was a pretty big decision for me. To stay focused, I came up with some entry criteria: storytelling, collaboration and sharing. Storytelling is very important to the way people communicate online; it crosses cultures and history and can reach out to people, via the internet, across the globe. The web is not about technology, it’s about people. If there’s something you want to see in the Best of the web section, please do let me know.

David Pearce Direct Marketing and Digital Manager t: 020 7803 4837 e: d.pearce@muscular-dystrophy.org tw: @TargetMD

Collaboration

Sharing

This is one of my favourite things from our website: Brad and Dan: Bloggers with Becker muscular dystrophy.

After taking pride of place in the last Target MD, I wasn’t expecting to talk too much about our forum, Talk MD, this time. But it burst back onto the scene via this ‘Follow Friday’ tweet from Donna:

What delighted me about this was we didn’t have any involvement in creating it whatsoever. Brad tweeted about it and I thought our supporters might like it, so it became a guest post. We did exactly the same thing with a day in the life post by Martyn Sibley too, he wrote about a day in his life living with spinal muscular atrophy. My thanks to Brad, Dan and Martyn for letting us share their stuff link? We’re keen to find more bloggers like these guys we can team up with, so if you see any please send them my way.

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Muscular Dystrophy Campaign

Four Course Classic Friday 22 June 2012

Chip in and change lives

Come and play golf for us on one of the longest days of the year. Tee off at dawn at a golf course near you, play 72 holes at four different courses, and relax at the fourth clubhouse as the light begins to fade on a great day of golf. It’s the ultimate golf challenge. Get a four-ball together to join in the biggest golfing day – the Muscular Dystrophy Campaign’s Four Course Classic 2012. Not only will you get to play golf from sunrise to sunset, but you’ll also be making a real difference to the lives of the 70,000 people we support in the UK who are affected by muscular dystrophy and related conditions. To enter a team or to find out more: t: 020 7803 4824 e: golf@muscular-dystrophy.org w: www.fourcourseclassic.co.uk Registered Charity No. 205395 and Registered Scottish Charity No. SC039445


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Sharon’s smile

One of the first things you notice about Sharon Halliday is her bright and sunny personality. Smiling and friendly, Sharon chats with everyone around her and her warm, relaxed manner puts everyone at ease. A full-time student and mum to a young daughter, Sharon says she has much to be cheerful about.

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haron, 47, was diagnosed with limb girdle muscular dystrophy when she was 30. At the age of 40, she had in vitro fertilisation (IVF) which, successful first time, brought her Kelan, her seven-year old daughter who is her pride and joy. Three years ago she gave up her job to pursue her lifelong dream to become a teacher, and now studies full-time at Stirling University. Target MD caught up with her at her home in Whitburn, Scotland. Born in Blackburn, Sharon was the middle child of three. Her family moved to Whitburn when Sharon was a child and has lived in the area ever since. She loved school and, a quiet child, she achieved excellent exam results and – the first person in her family to pursue further education – left home to study a Higher National Diploma in secretarial studies and languages in Edinburgh. Sharon had dreamed of becoming a teacher, but because there was an oversupply of teachers at that time, she was encouraged to study something different. She took an office job and spent a few years in Edinburgh before returning home. “As a youngster, my mum noticed that my arms would often come out of their sockets, and she took me to the doctor’s and I went for X-rays. The doctor told my mum it was nothing to worry about, and that I’d grow out of it,” Sharon said. “I’d often fall over nothing and bump my head. When I was 11, I started to find PE really difficult as I couldn’t run. Once I fell on the ice outside the school and I couldn’t get myself up; a teacher came and helped me up. When I struggled to climb up on to the bus, I went back to the doctor’s and was told I was anaemic,” Sharon said.

At the age of about 30 when Sharon started having problems climbing stairs, she knew something wasn’t right. “I knew that my sister didn’t have to go to gym to be able to keep up with everyday life, and I knew that there was clearly something quite wrong with me,” she said. After visiting the doctor and eventually being referred to a specialist consultant, the possibility of muscular dystrophy was discussed and explored.

dystrophy, Sharon struggled to fall pregnant and, at the age of 40, went for IVF. The treatment resulted in an immediate pregnancy, and Sharon said she couldn’t stop crying from happiness when she heard the news. After a healthy and problem-free pregnancy, Sharon gave birth to a bonny baby daughter, Kelan. For the first year of motherhood, Sharon had to have someone with her all the time, because she couldn’t pick Kelan up. Her then husband, mother and sister helped her lift and comfort the baby; this was a difficult time for the new mum but fortunately, as Kelan became more able to do things for herself, she knew intuitively that there were things she could do to help her mum. Ever the kind encourager, Kelan (pictured below, with Sharon) said to her mum recently, “I think you cope very well with your muscular dystrophy, Mummy.”

Sharon’s GP was aghast: “Don’t be silly,” she said. “Girls can’t get muscular dystrophy.” A muscle biopsy confirmed the diagnosis of limb girdle muscular dystrophy, although she’s never had the specific type diagnosed. It was a relief for Sharon to know that she wasn’t imagining something was wrong and, having lost her younger brother within the past year, (her younger brother passed away at the age of 27, after a year-long battle with cancer), Sharon felt that her diagnosis was ‘nothing compared to what he had had to go through’. An attitude, it seems, that has stuck with her ever since. “You only have the one shot at life,” Sharon said. “I can’t change the facts so I have to get on with what I have.” Sharon has learnt to adapt and if it means she has to take a different route to get the same result, it doesn’t really bother her at all. If she drops something on the floor, she uses a reacher to pick it up; her chair lifts her up to standing; her home is adapted for all her needs. Still ambulant, Sharon uses a mobility scooter when she goes out of the house, but at home, she is up and about much of the time. For reasons unrelated to her muscular

Two things changed soon after Kelan started school: Sharon got herself a mobility scooter and she decided to leave her job and follow her childhood dream of becoming a teacher. After doing an access course and a primary school placement, Sharon realised that primary school teaching was not for her. She had started studying maths and decided to continue towards a future of secondary school teaching. It seems nothing can hold Sharon back. Being a full-time student, being independent and being a mother to Kelan all give Sharon a full and focused life. That’s what you see in her eyes and her warm and confident smile

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www.muscular-dystrophy.org

2011 President’s Awards

At our National Conference held last October, around 300 delegates heard from a number of truly inspiring individuals who had contributed to the charity’s success over the past year. Our President, Sue Barker MBE, hosted the President’s Awards ceremony, which has become a highlight of the annual conference and an inspiration to individuals, families and supporters around the country.

Fundraiser of the Year Khurm Arshad

Conference round-up

October was conference month for the Muscular Dystrophy Campaign, with more than 400 people attending the Scottish and National Conferences in Glasgow and Nottingham respectively. Feedback from both conferences was positive, and our families who gathered valued the opportunity to meet with other families, as well as professionals, and to find out latest developments in research and campaigning. The sessions on working with the media were also popular and informative, and our supporters appreciated being able to put faces to names, and to meet staff from the charity.

The conference was broadcast live online, enabling everyone who was unable to attend to view the event on the web. The 2012 conference dates are now set, so do put these in your diary: Scottish Conference: Saturday 6 October 2012, at the Beardmore Conference Centre in Glasgow. National Conference: Saturday 13 October 2012, at the East Midlands Conference Centre in Nottingham.

Khurm, described by Sue Barker as a ‘dynamic and determined leader’, was inspired to get involved with the charity by his 13-year old brother Auzair who has Duchenne muscular dystrophy. Over the past two years, Khurm formed a local fundraising group and led the team to organise a successful Indian banquet, raising an amazing £7,000. Since then, he has persuaded ten of his friends to run the Bristol Half Marathon and formed a partnership with Bristol bar, Malloy’s, raising thousands of pounds for the charity.

Fundraiser of the Year Gavin Reeves

Sue Barker presented the award to this determined fundraiser, calling his commitment to the charity ‘genuinely astonishing’. Gavin got involved with the charity through his love of running, and decided to raise money for the charity through his first London Marathon in 1996. After catching the running bug and enjoying the sense of achievement of fundraising, Gavin decided to run the event again in 1997 and a further, astonishing, 15 years in a row - running a total of 390 miles through the streets of London.  

Fundraising Group of the Year Bertie 23

This group is made up of seven truly extraordinary young

men from the South West who have made a fantastic contribution to the charity since committing to take part in 23 fundraising events in memory of their friend, Bertie Brookman, who sadly died from muscular dystrophy in April 2010 at the age of 23. To honour the man they call ‘one of the nicest individuals we have ever known’, the group has raised more than £12,000 for us, through a staggering series of challenges including cycling from John O’Groats to Lands End and completing an exhausting 23k swim.

Inspiring Person of the Year Jon Hastie

Jon, 30, has Duchenne muscular dystrophy. Determined to show people how much can be achieved by men with this condition, in the face of daily challenges, Jon set out to make a documentary, recruiting a professional film crew and gaining funding for the project. In the summer, Jon travelled throughout UK and into Europe, to visit and interview other men with the condition and highlight their achievements, to inspire the next generation of people with Duchenne muscular dystrophy. The film is called “A life worth living”.

Young Inspiring Person of the Year Chloe Ball Hopkins

Chloe, 15, has nemaline myopathy and was chosen to perform the coin toss at the Wimbledon Ladies’ Final in 2011, in front of 375 million television viewers worldwide. Sue Barker, said Chloe had ‘stolen the nation’s heart’. Chloe overcame


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bullying at school and the difficulties associated with her condition to become a wheelchair tennis champion, winning second place in the National Junior Championships. The youngster has also done television interviews about her condition, helping the charity to raise awareness of muscular dystrophy and related conditions.

Volunteer of the Year  Sarah Rose, Anne Marie Groves and Victoria Peggs

Sarah Rose, Anne Marie Groves and Victoria Peggs are all amazing women with different forms of neuromuscular conditions and a great deal of patience. They volunteer as moderators for the charity’s online forum, Talk MD, which – since it started over a year ago – has grown to close to 2,000 members. Between the ‘mods’, they have helped other people with muscular dystrophy and related conditions to share their experiences, when mobility issues might restrict their ability to meet face-to-face.

Campaigner of the Year David Gale

David Gale, who has Becker muscular dystrophy, has been a dedicated campaigner since the formation of the Trailblazers network, and was an inaugural member, paving the way for what is now a 400-strong group. Over the past three years, David has spearheaded a campaign for accessible transport in his local region of Cumbria.  

Carers of the Year Lynn and Paul Leadbitter

Lynn and Paul have always cared for their 34-year old son, Matthew, who has Duchenne muscular dystrophy. In December 2010, Matthew had an operation to help him breathe and afterwards the family was devastated to be told the Primary Care Trust (PCT)

refused to fund his specialist home-care and he was placed in a care home. The couple travelled 60-miles twice a day, every day, to support Matthew and eventually, they heard Matthew would return home by Christmas. (Read more about our advocacy team’s role in this case on p23.)  

Corporate Partnership of the Year St. George

For over ten years, property company St George has helped us form important links with the property industry. One of the first companies to enter their staff in the Property Week Challenge 10k run, they also sparked competition between leading companies in the industry. They have also regularly supported the charity’s annual Microscope Ball, and all of their activities have to date raised an amazing £290,000.

Health Professional of the Year Dr Stefan Spinty 

Stefan is a paediatric neuromuscular consultant at Alder Hey Children’s Hospital in Liverpool, and has almost single-handedly developed one of the best neuromuscular services in the UK, working alongside care advisors and physiotherapists. Stefan is committed to changing services for people with these conditions in all regions and has contributed his experiences to several of the charity’s campaigning reports.  

Media Partner of the Year Citizen Newspaper in Gloucestershire

The paper has been the media partner of the Royal Forest of Dean Branch’s annual Spirit of Christmas Carol concert for the past nine years. The Editor of the Citizen, Ian Mean, has been pivotal in the ongoing success of the concert through his passionate desire to raise awareness of muscular dystrophy, support families

and individuals within the local area and encourage his readers to buy tickets for the concert and raise vital funds.  

Young Scientist of the Year Dr Caroline Godfrey

Caroline recently completed a Muscular Dystrophy Campaign-funded PhD into congenital muscular dystrophies and has made a real impact in the field, with her research helping to make diagnosis faster and more accurate. She now works in Dr Matthew Wood’s laboratory in Oxford on a therapy for Duchenne muscular dystrophy. In her spare time, Caroline volunteers to write for our website and newsletters and has even volunteered at our Oxford Town & Gown 10k race.  

Research Ambassador of the Year Stuart Watt

Over 30 years ago, Stuart began fundraising for research into muscular dystrophy and related conditions, inspired by his wife who has FSH muscular dystrophy. Not content with simply fundraising, Stuart has more recently volunteered as a member of our lay research panel, helping the charity decide which research to back.

Lifetime Achievement Award Betty McMorran

Betty, described by Sue Barker as an ‘inspiration’, was a fulltime carer for more than 50 years, for her husband, Ernie, who had muscular dystrophy. Over this time she was Chair of the Newcastle branch of the Muscular Dystrophy Campaign, providing support to other local families affected by the condition while undertaking regular fundraising activities such as sponsored abseils, runs and walks.

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News

www.muscular-dystrophy.org

Many emergency hospital admissions avoidable Data showing that many unplanned emergency admissions to hospital are avoidable for patients with neuromuscular conditions was highlighted by BBC News in early December.

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

The data, which was part of an audit of hospital admissions being carried out by Professor Mike Hanna, was presented at an NHS workshop and showed that between 37 and 42 percent of emergency admissions could have been avoided if patients had been able to access the right specialist support. Access to specialist teams, emergency plans, specialist physiotherapy and vital equipment such as orthotics and cough assist machines were all highlighted as important factors in preventing emergency admissions, which are often the result of falls or respiratory infections. The vital role of the Neuromuscular Care Advisor in helping patients to access this support was also highlighted. The Muscular Dystrophy Campaign is delighted that our campaigning has helped to secure twice the number of care advisors that there were in 2008, and will continue to campaign to make sure that all patients who need this support can access it. “Neuromuscular conditions are progressive and it is crucial that patients receive ongoing input from a co-ordinated multidisciplinary team of specialist health professionals to manage changing symptoms, to reduce complications and to provide expert advice on equipment and treatments,” Professor Hanna said. Robert Meadowcroft, the Muscular Dystrophy Campaign’s Chief Executive, said patients were missing out on vital specialist healthcare services and support. “It is appalling that the NHS is being so short-sighted in its approach that we’re in a situation where many children and adults are needlessly experiencing lifethreatening incidents,” Robert said. If you’d like to find out more about Professor Hanna’s audit, please get in touch with Lisa James in our campaigns team on 020 7803 2865 or at campaigns@muscular-dystrophy.org 


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Invest to Save in Wales

As much as £3.9 million is wasted by NHS Wales each year on emergency care for patients, as a result of falls, chest infections and heart problems that could have been prevented through proper access to ongoing care.

Invest to Save:

This was the key finding of the Muscular Dystrophy Campaign’s report Invest to Save: Improving services and reducing costs in Wales that was launched in the Welsh Assembly in November 2011. People living with muscular dystrophy and related conditions told the Welsh Assembly just how frustrated they are. After an Assembly investigation last year found Wales to be the worst place in the UK for care for these conditions, and after recommending an urgent investment of £470,000 ‘to prevent the service from collapsing’, just a fraction of the funding has so far been put forward. The 3,500 people in Wales living with muscular dystrophy and related conditions are going without vital, lifesaving healthcare, while millions of pounds are spent each year on emergency hospital treatment when their conditions become critical. Jan Williams, Chief Executive of Cardiff and Vale University Health Board, told guests at the reception that an audit of unplanned emergency admissions would be taking place. Good news when you consider the lack of specialist neuromuscular consultants has been described as ‘chronic’, with the equivalent of 1.5 professionals available to all patients in Wales, compared to 4.5 in the North East of England, which has a similar population. This has left children in Wales waiting up to nine months, and adults up to two years, between appointments. Henry Langen from Narberth has Facioscapulohumeral muscular dystrophy (FSH). After learning his diagnosis in his late twenties, Henry faced a total lack of advice and support on managing his condition, which eventually led to heart failure.

“There was no-one there to tell me how to manage my health or to spot problems. The only contact I had was one brief appointment with a very busy specialist consultant once a year. Not knowing what to do, I tried to carry on as normal, but my heart paid the price. I was rushed into hospital three times with heart failure, which they tried, unsuccessfully, to treat with drugs. Finally they realised my lungs were being affected by my condition and I was barely breathing at night, putting pressure on my heart. None of the hospital staff had much knowledge of muscular dystrophy, and they also had nowhere to turn to get it,” Henry said. Campaigner Ray Thomas from Neath has fought alongside the charity for over 30 years and lost two sons to Becker muscular dystrophy. He is leading calls for action on the recommendations of the Thomas Report, named in honour of his support for families across Wales affected by muscular dystrophy and related conditions. “Through research and treatments we have developed the ability to give people born with these conditions longer, fuller, healthier lives than ever before - at a saving, not a cost. There is no place for reluctance from NHS Wales,” Ray said. For more information, please get in touch with Jonathan Kingsley in our campaigns team on 020 7803 4839 or campaigns@muscular-dystrophy.org

Trailblazers recognised for outstanding campaigning The achievements of the Trailblazers network were celebrated in November 2011 when the young campaigners won an award for Outstanding Recognition of their campaigns.  Trailblazers ambassadors from around the UK received the award on behalf of the network at the UK Youth Hearing Unheard Voices ceremony, held at St James’ Palace. The young campaigners discussed their access campaigns with Princess Anne, The Princess Royal and UK Youth President and former Formula 1 World Champion driver Nigel Mansell.

A Christmas story

Lyn and Paul Leadbitter (pictured below with their son, Matthew) were overjoyed that their son went home for Christmas after months of living in a residential care home following a vital surgical procedure to protect his health.

Following tracheotomy surgery in December 2010, Matthew’s care needs increased and the family were locked in a battle with the local NHS to secure funding for his care to be administered at home. Instead, the Primary Care Trust (PCT) argued that his needs would be best met in a care home 30 miles away. The family were concerned that in this setting - so far away from the house Matthew has called home all his life  he would not have access to the right facilities or expert staff to meet his specialist care needs. Furthermore, at this difficult time Matthew was to be separated from this close network of family and friends at a great cost to his quality of life. The Muscular Dystrophy Campaign’s  advocacy service represented the family in their fight with the PCT and was delighted to announce back in June 2011 that the funding had been agreed for Matthew to come home. The family worked with the local authority to make all the necessary adaptations to their home so that it is fully accessible to Matthew. With that work now complete, the family were able to welcome Matthew home and had a lovely Christmas together - something which was not possible in 2010. If you are facing similar issues to those experienced by the Leadbitters, do get in touch with Jen Taylor or David MooreCrouch in our advocacy team on 020 7803 2853 or campaigns@muscular-dystrophy.org Demand for our advocacy work is on the increase and we could be doing more. If you’d like to fundraise for us to help more families like the Leadbitters, please get in touch with us on 0845 872 9058.

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Green light for extension trial for Duchenne muscular dystrophy

Groundbreaking new inquiry launched in Northern Ireland

PTC Therapeutics has affirmed their commitment to develop Ataluren as a treatment for Duchenne muscular dystrophy and announced progress in starting an extension trial in the UK, Europe, Israel and Australia.

Parents in Northern Ireland are being given devastating news – that their children have life-limiting conditions – over the phone and are being forced to travel to England for care and advice. Campaigners gave Members of the Legislative Assembly (MLAs) and health leaders in Stormont last December shocking accounts of specialist health services in Northern Ireland.

The Muscular Dystrophy Campaign is keeping in close contact with the pharmaceutical industry to get firsthand information about ongoing clinical trials. The initial results of the international phase 2b clinical trial showed that the lower of the two doses tested was more beneficial than the higher dose and because of this unexpected outcome all ongoing studies had been halted in April 2010. In the US, all boys who participated in the phase 2b study have been receiving the lower dose in an extension trial since November 2010 but getting an extension trial started in Europe has been slow. We were reassured that PTC Therapeutics remains committed to continue with the trial here in the UK as quickly as possible and has been working with leading clinicians and the regulatory bodies to ensure that all the boys who participated in the phase 2b study here will be able to gain access to the drug. The company said it would submit the necessary paperwork to the regulating committees in the UK, Europe, Israel and Australia by the end of December 2011. The extension trial will begin once all the committees have given their approval. “This is finally good news for our families who have been waiting patiently for a positive decision. We will continue to work closely with PTC Therapeutics to ensure that the voices of our families are heard and we will push for the development of Ataluren to stay on track,” said Dr Marita Pohlschmidt, Director of Research Ataluren is an oral drug with the potential to help the 10 to 15 percent of boys with Duchenne muscular dystrophy who have a specific change in their DNA, called a nonsense mutation.

At the launch of a groundbreaking inquiry into care in Northern Ireland for muscular dystrophy and related conditions, families from across the country told of specialist health services being ‘stretched far beyond any realistic limit’. The All Party Group on Muscular Dystrophy has campaigners told Members of the launched the six-month inquiry following mounting calls from the Muscular Dystrophy Campaign and families affected by the conditions to address a serious shortfall in care which they say is putting patients lives at risk. There is just one NHS Neuromuscular Care Advisor and two consultants to support the 2,000 patients affected by muscular dystrophy and related conditions in Northern Ireland. Adam Stevenson from Newtownards has Duchenne muscular dystrophy. His father, Gary, told how he and wife Beverly were told of Adam’s condition by telephone, and were not getting the emotional and practical support that they need. “Adam was five when we first took him into hospital for tests. The consultant put our minds at rest and told us she was almost positive it wasn’t muscular dystrophy, but referred us to another hospital ‘just in case’. Six months later we had a second round of tests at a different hospital.  “The phone rang at 5pm one evening and the consultant told us Adam had Duchenne muscular dystrophy and what it would mean for him. I couldn’t believe what I was hearing - I’d never even heard of it. We were walking around in a daze. It was an awful way to find out.  “Two days later we saw the care advisor for the first time. After two days of agony

and questions, I honestly don’t know what we would have done without her. We hear about kids in England who get specialist physiotherapy several times a week. Adam only gets physiotherapy every three months, and then it’s more to assess him than to make a difference to his health. The health services that exist are scattered all over the place. The care advisor gives as much support as she can, but when there are 2,000 of us battling for her time how much can she realistically do?” said Gary. Nic Bungay, Director of Campaigns, Care and Support at the Muscular Dystrophy Campaign said that failing to invest in specialist services for neuromuscular patients, benefits no-one. “Not only does it leave patients forced to deal with severe, complex health conditions without vital advice and often life-prolonging treatments, but the NHS picks up a far more substantial bill later through the cost of emergency care when things go wrong. This inquiry will give patients the opportunity to have their voices heard and will pave the way for the desperately-needed improvements to specialist care in Northern Ireland,” said Nic. If you’d like to get involved or find out more about the All Party Group on Muscular Dystrophy’s Inquiry, please get in touch with Jonathan Kingsley at 020 7803 4839 or j.kingsley@muscular-dystrophy.org

Our information is top quality Being the leading UK charity focusing on muscular dystrophy and related conditions, many of the 70,000 people affected by the conditions rely on us to provide up-to-date and accurate expert information. Following a rigorous review, we were recently awarded national recognition in the form of the Information Standard, a Department of Health quality mark that helps people choose reliable health and social care. We receive no government funding and rely on voluntary donations to fund our work. It is only thanks to your valued support that we are able to offer a top quality information service. To help us continue providing this vital support, please contact our fundraising team on 0845 872 9058.


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The big screen for everyone

Caring support

For individuals and families, it can often be daunting to deal with a new diagnosis, or changing needs relating to muscular dystrophy or a related condition. You might also feel isolated when it seems that no-one understands your condition or the best healthcare required for managing your condition, or indeed where to go for the best specialist services.

informative and useful and it delivered all of those things. It was great to meet all the other care advisors, as the role can be a little isolating, despite everyone offering advice at the end of the phone or by email. Finding out how other centres are running was useful, as a way of informing my own practice and getting ideas for improvement,” Heather said.

With this in mind and a growing number of neuromuscular care advisors and specialist nurses around the country, the Muscular Dystrophy Campaign aims to provide periodic training for these professionals. They met in October in Liverpool, for two days of specialist training. The full programme included updates on legislation and standards of care, neuromuscular services, advocacy services, as well feedback from courses and seminars that care advisors and nurses had been to. The two-day programme was designed to equip neuromuscular care advisors and specialist nurses with the latest information to serve their patients throughout the country.

“As a whole, we are a force to be reckoned with and such a varied skill base of professionals. To know a name is one thing, but to meet face-to-face helps when posts can be isolating and emotionally demanding. I think we shouldn’t underestimate the difficulties of working with chronic illness and the demands that it has on our well-being. Training like this, fosters a supported peer sharing that can offer to untangle complex dynamics that we experience firsthand from children, families and professionals,” said Birmingham-based Neuromuscular Care Advisor, Sue Gallagher.

A total of 27 professionals took part in the two-day event and from all accounts it served up welcome and valuable resources to enhance the knowledge of neuromuscular care advisors and specialist nurses. “Thank you to the Muscular Dystrophy Campaign for organising such an informative meeting,” said Heather Ryan, the Neuromuscular Care Advisor based in Oxford. “I expected the training to be interesting,

Martin Chainani, Neuromuscular Care Advisor from Great Ormond Street Hospital, found this training to be the best care advisor meeting ever. “The discussions we had on the first day really informed my practice, including the information about continuing care funding and direct payments, and how to negotiate for top-ups to Disabled Facilities Grants,” Martin said. If you’d like to find out more about upcoming events or to hear about the neuromuscular care advisors in your area, please contact Lyn Inman on 01132 301313 or lyni@muscular-dystrophy.org

Trailblazers from across the UK came together in Westminster in early December to put their thoughts and opinions to senior executives from Odeon, Cineworld and Vue cinemas. Earlier in the day, members of the network (pictured above) took a petition of more than 1,000 signatures to the Prime Minister at 10 Downing Street, calling for action to improve the services and facilities for disabled customers at cinemas. At a meeting of the All Party Parliamentary Group (APPG) for Young Disabled People, Trailblazers discussed the findings from our Big Picture report and recommended the installation of removable seating options as a way of ensuring wheelchair spaces could be used, even when no disabled customers were in the cinema.  Trailblazers also put forward concerns regarding disability awareness among cinema staff, and APPG Chairman, Paul Maynard MP, suggested the cinema chains work with Trailblazers so staff members could learn from their expertise. Odeon cinemas said this was ‘highly probable’. “It was encouraging to hear that the cinemas were keen to learn from our experiences and research, and to work with Trailblazers to ensure young disabled people get a good service at cinemas,” said Bobby Ancil, Trailblazers Project Manager.

On the web www.mdctrailblazers.org/news/911

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week, but enjoyed mixing with children similar to himself and taking part in extra activities, such as joining the Scouts. It also introduced him to Edinburgh, where he lives today.

“I believe that time set me up very well for the future,” Mark said.

Mark Chapman is a 41-year old man who lives in a cosy bungalow in Edinburgh. He enjoys photography and art, and recently enjoyed a two-week holiday in Spain where – for the first time in about 20 years – he went into the swimming pool. Mark has Duchenne muscular dystrophy.

C

hair of the Scottish Muscle Group and an active member of the Cross Party Group for Muscular Dystrophy in the Scottish Parliament, Mark leads a full, active and independent life. He has fought hard for the independence and support he enjoys today, and this experience drives him to speak up for other people in similar situations.

Mark grew up at Paxton in the idyllic Berwickshire countryside in the Scottish Borders, the middle son of Donald and Janet and brother to Graeme and Stephen. When he went to primary school, his mum noticed he kept falling, wasn’t keeping up with his peers and was struggling to get himself up off the floor. Doctors said he was developing slowly and told his mum not to worry. After ‘a

horrendous time’ of being made to feel like she was being paranoid, Mark’s mum was given a referral for Mark to see Professor Emery. “My parents then received the shattering diagnosis that I had Duchenne muscular dystrophy and were told I would probably not live beyond adulthood. I was only six,” Mark said. “Fortunately, my brothers both tested negative.” At 10, Mark started using a wheelchair and, after primary school, he went to Graysmill School in Edinburgh – a school for children with disabilities, which had a residential unit – where he completed his schooling in 1988. He found it difficult being away from the family during the

After school, things got very difficult for Mark. He wished to study art/design at college in Edinburgh, but needed to find somewhere to live that would provide the support he needed. Unable to access the necessary funding, Mark ended up back at home with nothing to do. His parents helped him fight to find suitable accommodation and to access the support and appropriate Local Authority funding, and he finally moved into a shared flat in brand new supported, independent-living accommodation in Edinburgh, called Freespace Housing. Living there, with extra support at college from a Community Service Volunteer, he completed a Higher National Diploma in Illustration and Media Design. Like most students, Mark had an active social life involving many pubs, clubs and parties. After college, Mark found his care needs were increasing. Recurring chest infections, headaches, low energy and severe mood changes led to many GP visits, and the discovery that his condition was seriously affecting respiratory function. He was told nothing more could be done. However, Mark knew of a school friend with the same condition who – following an emergency hospital admission – was given a tracheotomy and was now using a ventilator. His friend told him the procedure had ‘saved his life’. Mark discussed his options with friends and family (especially his lifelong friend and partner, Corinna, who he’d been living with for two years), before being referred to the same specialist consultant, Dr Ian Grant, who became Mark’s consultant for a number of years. Mark decided his best choice was to go ahead with a tracheotomy and use a ventilator. He knew there would be risks involved with the surgery, but also knew that he would need increased support when he went home. It took another battle – which he fought and won – to


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access the funding to put in place the vital fulltime, one-on-one, 24/7 support he needed. So it was, then, at the age of 26 – nearly 16 years ago – that Mark had a successful tracheotomy and moved into the housing association flat he lives in today. He has a Self-Directed Support funding package to employ his team of five personal assistants, all specially trained in managing his ventilation. He receives additional support from specialist nurses at the Ventilation Unit Dr Grant set up at Edinburgh’s Western General Hospital.

“This whole support package is one of the main reasons my health and wellbeing have remained so good,” said Mark. Mark has volunteered for two disabilityled organisations: the Lothian Centre for Inclusive Living and the Scottish Personal Assistant Employers’ Network, and is currently involved in campaigning and media work for the Muscular Dystrophy Campaign. Through social media, he keeps up with many other men with Duchenne muscular dystrophy, a few of whom are even older than he is, and learns of the struggles many of them go through. “When I realised how much other people were really struggling and not getting to the point that I had managed to, I started thinking something wasn’t right,” Mark said. “I decided to get involved with the Muscular Dystrophy Campaign because people like me can really speak out for others in similar situations. I am happy to go to Parliament and talk about what is going on and question why people aren’t getting the opportunities and services they should be getting.” Mark added his weight to the recent launch of the charity’s report: Invest to Save: improving services and reducing costs in Scotland. The report was launched following an investigation into the cost benefit of improving neuromuscular services in Scotland, in order to prevent emergency admissions to hospital for people with muscular dystrophy. Mark said things needed to change.

“Time is so precious for people with Duchenne Muscular Dystrophy. Your health can change so much in a short time and every family will tell you that every day counts. The correct assistance, support, advice, equipment and physiotherapy can make a huge difference to the length and quality of people’s lives. This is why increasing care advisor posts is so important. We simply cannot afford to wait around for these things to happen,” he said. Mark has certainly not been one to wait around for things to happen. He’s worked hard to make sure he has what he needs to live a full and independent life. Not only does he have the job of managing his own care, but he still enjoys art, visiting exhibitions whenever he can, and being creative, producing artwork and designs on his computer. He is also a keen photographer, and has recently acquired technology that enables him to take photographs with the use of a blow-type switch. Last spring, Mark was interviewed for Jon Hastie’s soon-to-be-released film, A life worth living; the story of Jon’s journey to meet other adults with Duchenne muscular dystrophy who are living productive, creative and fulfilling lives. And then in the summer, Mark flew for the first time in many years and went on a two-week holiday to Las Piedras, a Spanish resort near Malaga (pictured right). The resort was fully and perfectly equipped for people with disabilities and Mark enjoyed walks, drives, sightseeing trips, having a swim and finding plenty of opportunity for landscape photography. A man of his word, Mark certainly makes every day count

On the web LCIL: www.lothiancil.org.uk SPAEN: www.spaen.co.uk Las Piedras: www.laspiedras.co.uk A life worth living: www.alifeworthliving.com

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Target MD and Target Research

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.

In these harsh economic times, we’re working hard to save money. 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 conditions. With this in mind, we‘ve launched our new-look Target MD and Target Research – both to be delivered to you four times a year.

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 Target MD Subscriptions at 61 Southwark Street, London SE1 0HL:

That’s right! You will receive Target MD four times a year instead of three, plus you will receive the new ‘slimline’ Target Research at the same time, rather than once a year as you did previously.

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November 2011

A story of two sisters

Leisure activities Sports and accessible travel ALL INSIDE

Sharing a rare diagnosis MUST READ

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October 2011

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INNOVATION

A new way to deliver molecular patches to the muscles

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Introducing our nine new research projects A MUST READ

Preimplantation genetic diagnosis One family’s quest to have healthy children

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Also inside…experts answer your questions and read about all the latest research and clinical trial news


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What do you do if you’re a sports-lover and you’re disabled? Play the highly competitive sport of Boccia, of course. Meet four British professional, elite athletes who do just that. Scott McCowan, Peter McGuire, Stephen McGuire and Jacob Thomas all play Boccia for Great Britain, and are highly likely to represent ParalympicsGB in London in 2012. The squad is yet to be named – so no-one wants to jinx it – but with players who rank in the top handful of Boccia players internationally, there seems to be little doubt. Boccia is a highly competitive sport, offering players – both male and female – the opportunity to travel all around the world and make friends and, from what these four young men said, to discover that nothing beats the feeling that competing at a high level and winning give you. These are four young men determined to medal in their home country Paralympics. With their track record, it’ll be no surprise if they do. Jacob Thomas (pictured on p30) is 17 years old and has Duchenne muscular dystrophy. He lives in the small hamlet of Bethesda in the Welsh county of Pembrokeshire, with his mum, dad and 13-year old sister, Polly. Jacob went to a Welsh medium primary school, Ysgol Brynconin and when he was 11, he went to Ysgol Preseli, the local Welsh comprehensive school. He is now studying sports science at Pembrokeshire College. 

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Jacob was diagnosed with Duchenne muscular dystrophy shortly after birth, following a heel-prick test which was being done as part of a five-year study in Wales into muscular dystrophy.   He was introduced to Boccia in primary school by his LSA when he was finding it more difficult to play football with his friends at play time. Jayne (his LSA) acquired a sports bag from the local Disability Sports Officer, and in it was a set of plastic balls and instructions how to play this game called Boccia. It was not long before Jacob was hooked on the game, playing for his school team and then on to Cardiff to train with the Boccia Blasters. There was no looking back.   Initially a BC4 player (this means throwing the balls), Jacob changed to a BC3 player which means he plays using a ramp to propel the ball and a head pointer to release it. He has an assistant

Playing, coaching, volunteering or torchbearing? Are you involved in the London Olympics or Paralympics in 2012? Do get in touch if you have tickets to any events, if you’re an Ambassador or torchbearer, or if you’re playing or coaching – or hoping to – in any event. Or maybe you have dreams of representing your country at a future Olympics or Paralympics? Or maybe you’re coaching some future hopefuls in your local area. We’d love to celebrate and share your story, so email us at targetmd@ muscular-dystrophy.org or The Editor Target MD, 61 Southwark Street, London S1 0HL with your Olympics and Paralympics news.

(his dad) to help place the ball on the ramp.   After playing for Wales for several years, Jacob was invited to be part of the Great Britain Fast Track Talent programme, which involved 18 months of training and trials, the aim of which was to find athletes with the potential to go forward to 2012. This was such an exciting and busy time, which ended with his selection into the GB squad, training towards 2012.

“It’s my dream to play for Great Britain and get a chance to play the international players,” Jacob said.

  “It has been such a fantastic experience in the last two years. I have become Welsh Champion 2010, British BC3 Champion 2010 and 2011, competed in the World Cup in Belfast in August 2011 and came 5th and placed 4th in Europe in the Europa Cup in November 2011,” he said.   The next big goal is to train hard over the winter months and get picked to represent ParalympicsGB in Boccia in London later this year. Scott McCowan (pictured on p29) is 20 and comes from Ayrshire in Scotland. A student of sports science and psychology at Stirling University, he lives on campus even though he’s taken a break from his studies for a year, to focus on training for Boccia. He goes home to the ‘Shire when he can, and spends time with his mum and dad and 16-year old brother, Jamie. Scott and Jamie both have Duchenne muscular dystrophy. Scott started playing Boccia four years ago. At first, he thought it would be another sport that he wouldn’t be able to play, and it was only when brother, Jamie, won an award at school for inclusion and was invited to a squad camp, that Scott got to try out Boccia properly. He started playing with a ramp (BC3) straight away and enlisted the support of his dad as his ramp assistant. Scott mentioned the commitment you need to do all the training for Boccia and said

that if his parents weren’t willing to take him and Jamie everywhere they need to be, they wouldn’t be able to play at the level they do. A natural at Boccia, Scott came 17th in the European Individual Championships on debut in 2009 in Portugal. He counts captaining his country in the BC3 pairs at the World Championships in Lisbon, 2010 and beating, the World number 2 pair, Portugal en route to the Cheshire Building Society International Pairs Trophy in Wigan, 2011 among his proudest moments in sport. Six out of the 11 GB squad players are from Scotland. “We don’t have a lot of players in this country, but we do have the quality,” Scott said. With Lottery funding through UK Sport, being part of the Winning Students’ Programme at university, and an ASDA athlete, Scott is well set up for the months of training and competition throughout UK and Europe in the months leading up to Paralympic selection in March. “It has been a bit of a competition whirlwind recently! One thing about Boccia is that It is a very competitive sport, which is great,” said Scott, who admitted that nothing beats the feeling that winning a competition gives you. He should know: he’s a three-time Scottish National Champion, twotime Scottish Open Champion, British Championships Silver medallist 2011, and one half of the aforementioned Cheshire Building Society International Pairs Champions. Diagnosed with Duchenne muscular dystrophy at the age of six, Scott was the first disabled child to take part in the full curriculum at his local mainstream secondary school. Although he had little access to sport, he had a good experience at school and was glad to be at the same school as his friends. Scott’s goals for the future – apart from playing for TeamGB at his home Paralympics in 2012 – include being involved in coaching sport, once he’s finished his degree in 2014 and, with a good amount of sibling rivalry, he also looks forward to keeping brother Jamie out of the national Boccia team in the years to come!


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A keen Manchester United and Celtic fan, Scott also plays wheelchair hockey in his free moments and has his own radio show at University. Peter and Stephen McGuire (pictured in action on p32) were born in Bellshill and grew up in Hamilton. They both went to a mainstream primary school and moved to a special needs secondary school in Glasgow. They found the challenges equal at both schools – although they had no sport at the mainstream school they got all the educational support they needed at secondary school. “I couldn’t hide, though!” said Pete. Stephen (27) has always loved sport and so, when he left school and went to the Glasgow Caledonian University to study retail, he was determined to find a Paralympic sport that he could compete in. He made contact with a number of sports’ bodies and, after playing Boccia at a taster event, he was invited to the

European Championships in Portugal. “I never won a match, but I had a great time,” said Stephen.

And so Stephen’s life as an elite athlete began. It was a few years before he was joined by brother, Pete. Both brothers have an undiagnosed form of muscular dystrophy. Stephen could walk until he was 15. For a while it was thought they had Ullrich congenital muscular dystrophy, but that was ruled out. Pete has had two extremely painful muscle biopsies that have been lost by the hospital, so he has abandoned his quest for a definitive diagnosis. Pete (29) started playing Boccia in 2006, soon after Stephen returned from the European Championships in Portugal. Stephen needed a partner in the BC4 category pairs, and who better to ask than his brother? The two have gone on to achieve excellence in world Boccia

About Boccia Boccia (pronounced ‘Bot’cha’) is a Paralympic sport, introduced in 1984, for athletes with disabilities that have a major impact on motor skills. It has no Olympic counterpart. Boccia is a target ball sport, belonging to the same family as pétanque and bowls; athletes throw, kick or use a ramp to propel a ball on to the court, with the aim of getting closest to a ‘jack’ ball. It is played indoors on a court similar in size to a badminton court. (GB Boccia website: www.bit.ly/sUjNom) Classification Players are divided into four classifications, depending on their disability and functional ability. All players have impaired functional ability in all four limbs. BC1: Players with cerebral palsy who are able to use their hands or feet to consistently propel a ball into play. BC1 athletes may have an aide on court to pass them their ball before each shot. BC2: players with cerebral palsy who are able to use their hands to consistently propel a ball into play and have greater functional ability than a BC1 athlete. BC3: players with cerebral palsy or other disability with locomotor dysfunction in all four limbs, who are unable to throw or kick a ball into play and as such are permitted to use an assistive device, such as a ramp to propel the ball into play and are supported by an assistant (‘ramper’). BC4: players who do not have cerebral palsy but have another disability with locomotor dysfunction in all four limbs and have similar functional ability to BC2 athletes.

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Feature

www.muscular-dystrophy.org

FIPFA World Cup update

pairs in their category: gold medallists at the European Championships in Portugal in 2009 and silver medallists at the World Championships in Portugal in 2010. Individually, Pete’s track record has been a tidy Scottish and British Champion in 2008 and fourth in the World Cup in Vancouver in 2007. Stephen’s track record is stellar: gold medallist at the Czech Open in 2009, silver medallist in Portugal’s World Championships in 2010, three time Scottish and Scottish Open Champion and six time British Champion, as well as gold and silver medallist in the pairs in Portugal in 2009 and 2010 respectively. At the recent European Championships in Norway, the brothers met in the semifinals of the individual event. Stephen won and went through to the final, in which he was not successful although he did retain his world number two ranking. Pete is ranked ten in the world, and as a pair they are ranked second in the world. They are both fully focused on Boccia, training as hard as they can towards selection for TeamGB in the Paralympics. “We missed out on Beijing, so would love to join in the London event next year. Our only focus has to be on Boccia,” Peter said. Stephen is an area representative for the Paralympics in Scotland and was invited to open the 1,000th Sainsbury’s store in Irvine at the end of November. Apart from doing a few media interviews, he also gave the CEO of the retail chain a quick lesson in Boccia. “Pete and I can’t build muscle in our arms and, while we don’t have much muscle strength, we work hard to maintain what we have,” Stephen said. For anyone wanting to follow in the

footsteps of these elite athletes, they had the following advice: “Don’t ever think Boccia is something you won’t be able to play,” said Scott. “I thought that and ended up missing out on a few good years before I started to play.” “If you have a good eye, you can play Boccia. With hard work and dedication to the training required, you can get to a high level in this sport very quickly,” said Stephen. Pete enjoys the competitiveness of Boccia, and the chance to travel and make new friends from all over the world.

“From the outside, Boccia looks simple but it’s like a game of chess,” said Pete.

Against all odds, the England Powerchair Football Team claimed a Silver medal at the 2011 FIPFA World Cup in Paris last November. England was unseeded and drawn in a group with Switzerland, Portugal, Japan and current world champions, USA. England needed to finish in the top two in the group to progress to the knock-out stages of the competition. They went one better, even securing a famous 1-0 victory against USA in the group stage, to secure top position. A dramatic semi-final victory against Belgium saw England up against USA in the FIPFA World Cup final. The team could not replicate their group performance and, despite a great effort, finished 3-0 to USA. To find out more about powerchair football and find your nearest club, please visit www.thewfa.org.uk or find them on Facebook/The Wheelchair Football Association. [See p16 and 17 of Target MD November 2011, where Trailblazer Stevie Pearson talked of his powerchair football career.]

“I have always loved sports of all kinds, but Boccia gives me a chance to compete on equal terms. I have met and made some fantastic friends through Boccia and it is a real honour to be part of the squad,” Jacob said.  With gruelling training schedules that see them at gym, hydrotherapy, on court training, squad training camps and test events, the four players have little time for relaxation. Scott enjoys supporting Manchester United and Celtic and playing wheelchair hockey. Pete enjoys a good pub quiz and goes to as many concerts as he can manage, while Stephen only has eyes for sport: he watches anything and everything he can, and supports Celtic. In his spare time, Jacob enjoys also supports Manchester United and enjoys following a variety of sports, particularly rugby and tennis. He also likes to see a good action movie and spends time on the playstation

On the web To find out more about Boccia, get in touch with: GB Boccia Federation: www.gb-boccia.org Boccia England: www.bocciaengland.org.uk Scottish Disability Sport: www.scottishdisabilitysport.com Federation of Disability Sport Wales: www.disabilitysportwales.org Follow Scott on Twitter @smccowan Highlights video of the Europa cup in Norway, featuring Scott McCowan: www.bit.ly/Boccia Watch a video about how Channel 4 made online games for wheelchair rugby and Boccia (which you can play on the website), featuring an interview with Scott McCowan at about 5 minutes: www.bit.ly/BocciaTV


The Mobility Roadshow

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www.muscular-dystrophy.org

2 1 0 2 n i t fi t Ge

In the month that is notorious for New Year’s resolutions, why not resolve to get fit in 2012 and sign up to take part in one of our high-energy events throughout the country this year?

TeamGB and Paralympics GB will be training like craz y for the London Olympics and Paralympics, and we can help you similarly to get fit and offer you some training tips and advice for our events. We might not offer you gold medal opportunities, but we can offer you the reward of knowing that you’re helping us to do our vital work in supporting the 70,000 individuals and families affected by muscular dystrophy and related conditions throughout the UK.

Virgin London Marathon Sunday 22 April 2012

London We have filled all our places in this year’s Virgin London Marathon on Saturday 22 April 2012. In our team for this year, we have more than 100 amazing runners who will be putting on their bright orange running vests in support of the Muscular Dystrophy Campaign. Included in the team is Tim Moss, who will be running in fancy dress – as a Muscular Dystrophy Campaign kite – in support of his brother who has Becker muscular dystrophy. We hope to raise a fantastic £240,000. If you have a place through the ballot, then please get in touch with us; you can still join our team! Contact Julia at events@muscular-dystrophy.org or call 020 7803 4828 to find out more.

Muscular Dystrophy Campaign Town and Gown 10k series

Exciting news for runners! Our flagship running event, the Oxford Town and

Gown 10k now has a historic rival. We’re proud to introduce the Cambridge Town and Gown 10k this year, giving you the opportunity to take part in the inaugural Cambridge run on 29 April, the 31st Oxford run on 13 May, or both! In true, unique Town and Gown 10k style, both routes go through the heart of the cities, pass their historic sites and end in beautiful green spaces. For more information, visit www. musculardystrophy.org/townandgown or call Alun on 020 7803 4820.

The Muscular Dystrophy Campaign’s Four Course Classic Friday 22 June 2012

At a golf course near you Our Four Course Classic is the ultimate golf challenge, nationwide, for any keen golfer. Playing on one of the longest days of the year, you tee off as soon as the sun rises and you get to play a full day of golf, aiming to reach the fourth clubhouse before the light fades on a marathon day.


www.muscular-dystrophy.org

“The 2011 Four Course Classic was a great experience. “Our team of four consisted of work colleagues and we made the fundraising something we could bring to the work place. We held dress-down days, auctions, raffles, cake days (we’ve had requests to hold them again!) and a putting competition. We can’t wait to apply for the 2012 event.” Matt Wilcox, Tech & Finance Supervisor, DTS EMA Global Hosting Centre “What a great golf challenge. I hope golfers sign up and that their friends and family sponsor them generously.” Peter Alliss You too could play 72 holes in a single day, on four different golf courses near where you live. Isn’t that a great way to spend a long summer’s day? Call us to find out more.

Great British 10k Sunday 8 July 2012

London It’s the year of the Olympics and Paralympics, and the Queen’s Diamond Jubilee. What better year to take part in a patriotic challenge?

The Great British 10k route takes you around central London, passing many famous landmarks the city has to offer – such as Big Ben the London Eye, St Paul’s Cathedral, Trafalgar Square and Westminster Abbey, as you run.

Bupa Great North Run Sunday 16 September 2012

Newcastle Join us for the world’s largest half marathon, with more than 50,000 participants taking to the streets of Newcastle. We will give you full training and fundraising support, including regular training advice from a specialist personal trainer. After the race, join us at a post-race reception to refuel and enjoy a well-deserved sports massage.

To find out more about the Four Course Classic, the Great British 10k and the Bupa Great North Run, do get in touch with Hayley Gill on 020 7803 4830 or h.gill@muscular-dystrophy.org or visit www.muscular-dystrophy.org

A peak experience 20 - 30 October 2012

Kilimanjaro Come and climb Mount Kilimanjaro in Tanzania with us from 20 to 30 October 2012. Conquer the world by taking on the highest free-standing mountain, and while you’re doing so, help us to conquer muscular dystrophy in the UK. Join us in the beautiful heart of Africa for the trek of a lifetime. To find out more, do get in touch with Julia on 020 7803 4828 or events@muscular-dystrophy.org

The Muscular Dystrophy Campaign runs a full programme of fitness and fundraising events across the UK, offering something for everyone. If you’d like to find out more about any of these opportunities, please call our fundraising hotline on 0845 782 9058.

Spirit of

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Christmas Flying the kite at Christmas

The Muscular Dystrophy Campaign’s Spirit of Christmas concerts opened with a concert at Hyndland Church in Glasgow. One special supporter went as far as shaving the kite logo into his hair for the evening. Robbie Martin, 7, (pictured right) has Duchenne muscular dystrophy and was excited to share his new look for his charity.

Spirit of Christmas in Oxford On 7 December, Christ Church Cathedral in Oxford played host to our annual Spirit of Christmas carol concert. Tracey McMahon, supporter of the Muscular Dystrophy Campaign, lit the first candle and spread the light through the congregation as we sang our first carol. A festive evening was had by all with angelic singing from the Summer Fields School choir and seasonal readings from our talented celebrities; Rula Lenska, James Cosmo, Tom Ward, Julian Rhind- Tutt, Reece Shearsmith and Jan Ravens, who raised everyone’s spirits with festive cheer.

Christmas around the country The concert in Glasgow was the first of 11 wonderful Spirit of Christmas carol concerts that we held across the UK in December. Around 2,000 people came along to usher in Christmas with us in beautiful venues in Kennington, Gloucester, Oxford, Henley, Tamworth, Leeds, Worcester, Paisley, Writtle and Sittingbourne. With the generous support of celebrities and politicians alike, our concerts raised more than £25,000 towards our vital work in improving the lives of the 70,000 people affected by muscular dystrophy and other related conditions across the UK. Keep an eye on our website around mid-year so you can put dates in your diary for 2012’s Spirit of Christmas concerts.


The new Avantgarde3 Living ahead!

Those of us who are not dependent on a wheelchair to get around have to learn how to think like a wheelchair user. However this is far from simple, which is why we received help from people who know what they are talking about for the development of the new, third generation of the Avantgarde. We examined and questioned every detail, every function, every material, every screw and every seam in the course of an intensive development process. We tested, discarded, improved and tested again. Until there was nothing left that we could improve.

UK/ADV/MOB/0368

Otto Bock Healthcare PLC

0845 600 7664 • www.ottobock.co.uk


Target MD 2012 (1 of 4)