TargetMD Winter 2011

Winter 2011

Leading the fight against muscle disease

FACING UP TO IT

Stephen Lord on his Casualty character with limb girdle

HOW TO GET THE HELP YOU NEED

Benefits needn’t elude you

MY LIFE AS A CARE ADVISOR There may be a new one near you

For support Tel: 0800 652 6352 Email: info@muscular-dystrophy.org Web: www.muscular-dystrophy.org

FOUR COURSE MENU

Help recruit more fundraising golfers

LATEST RESEARCH FUNDRAISING NEWS EXPERT ADVICE REGIONAL ROUND-UP MDC TargetMD Winter 2010 2nd AW.indd 1

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WELCOME Welcome to the latest copy of Target MD which, as ever, is packed with news and information and some inspiring stories.

As we look forward to a warm spring and the lighter evenings, I think we can also look forward to more progress in the fight against muscular dystrophy. We continue to feel encouraged by the news from the scientists and researchers and also by the advances now being made through the clinical trials underway here and in other countries. Further, we can see real progress and improvements in specialised services for children and adults with muscular dystrophy and related conditions thanks largely to the exceptional efforts made in campaigns by individuals and families living with the conditions, guided by the Muscular Dystrophy Campaign. Our information and advice service is also giving support to more people and our website is visited more and more frequently by people who want the latest news and information as well as the chance to share their views and suggestions.

CONTENTS

WINTER 2011

4 NEWS

32 ASK THE EXPERTS

The latest updates from across the UK

8 CAMPAIGNS

Staying afloat financially

10 LIFESTYLE

Answers to your questions about living with muscle disease

33 DIARY DATES

Events near you that you don’t want to miss out on

Don’t miss out on social media

34 INSPIRATION

12 RESEARCH

Gung-ho group honour a friend

Clinical fellows at our Muscle Centres

16 CARE SUPPORT Get the benefits you need

26

22 FUNDRAISING

Two people with big ideas

All this progress depends upon the generous support of our volunteers and donors, of course. We are working extremely hard to try to generate more funds although we know it is a tough world right now with the economy generally in some difficulty. So let me close by warmly thanking all our supporters and donors and may I also encourage others to join them in helping us maintain the current progress and win the fight against muscular disease.

Do enjoy reading your latest Target MD

Robert Meadowcroft, Chief Executive

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The magazine for supporters of the Muscular Dystrophy Campaign The Muscular Dystrophy Group of Great Britain and Northern Ireland 61 Southwark Street, London SE1 0HL. Registered Charity No. 205395 and SC039445

HOW TO DONATE...

Advertising enquiries: Parminder Sangha at Parminder.Sangha@tenalps.com / 020 7878 2367

If you want to make a donation to the Muscular Dystrophy Campaign, here’s how to contact us:

All other enquiries: If you would like to contribute to TargetMD or for any other enquiries, please contact us at targetmd@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

Leading the fight against muscle disease in the UK

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• Muscular Dystrophy Campaign, 61 Southwark Street, London SE1 0HL • Tel: 020 7803 4800 • Online: www.muscular-dystrophy.org • donations@muscular-dystrophy.org

www.muscular-dystrophy.org

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News

BEEB BULLY BATTLES MUSCLE DISEASE

Muscular dystrophy confronts TV viewers every Saturday night .

STEPHEN LORD DOESN’T play the nicest characters on TV, but he has strongly voiced his support for the Muscular Dystrophy Campaign after his character on Casualty was diagnosed with muscular dystrophy last month.

“Throughout the autumn, BBC One viewers saw Warren Clements at home, struggling with what he thought was ME,” says Stephen. “Now that he has a diagnosis of limb girdle muscular dystrophy, I feel a huge responsibility to help – and also make clear that Warren’s abusive behaviour is not related to muscle disease.”

Stephen has already attended one Microscope Ball and is becoming very personally involved with the charity.

Stephen joined Casualty after EastEnders, where for two years he played Dawn Swann’s boyfriend Jase Dyer, who was dramatically killed off the show in a mob-style murder.

Stephen says he was surprised to learn that his Casualty character was to be diagnosed with muscular dystrophy, but took the opportunity to carefully research the role. BBC medical advisors introduced him to people living with muscle disease who told Stephen the hard facts. “The condition can be so debilitating that I wanted to support the charity that is searching for a cure. It’s a small contribution on my part to the lives of people who have

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helped me play the role truthfully.” Stephen especially wants to highlight the emotional side of living with muscle disease. “People see what the illness can do when they are made aware of its physical effects, but the emotional

turmoil of living with it can engulf some. It highlights the importance of having fully integrated care and support.” To find out how Warren Clements responds to muscle disease, keep tuning into Casualty.

GOOD ENOUGH TO EAT KEEPING HER YORKSHIRE puddings warm, Emmerdale’s Catherine Tyldesley sports a come-hither look to promote the Muscular Dystrophy Campaign’s Come Dine with Us. This foodie fundraising event asks supporters to throw a dinner party, large or small, and request from their guests their most generous possible support for the Muscular Dystrophy Campaign. Celebrity Chef Simon Rimmer is currently judging your culinary creations of 2010, but Come Dine continues into the New Year. Find out more on our website, call our fundraising hotline on 0845 872 9058 or send an email to volunteerfundraising@ muscular-dystrophy.org

For support call 0800 652 6352

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News

NEWS IN BRIEF

TWO LEADERS TAKE ON NEW ROLES Robert Meadowcroft, Chief Executive The Board of Trustees at the Muscular Dystrophy Campaign is delighted to announce that Robert Meadowcroft has been confirmed in post as Chief Executive of the Muscular Dystrophy Campaign.

Robert joined the Muscular Dystrophy Campaign in 2006 and during four years as Director of Policy and Operations provided clear direction and great results for the charity.

As Chief Executive he will continue to provide strong leadership across the charity as we meet the challenges ahead. Newly elected Chairman of the Board of Trustees, Bill Ronald, said, “With the support I am sure he will receive from the charity’s staff and supporters, Robert’s appointment will enable the Muscular Dystrophy Campaign to build on the excellent work that it does and continue to offer the best service to the individuals and families affected by muscle disease.”

Celebrating their golden anniversary with a generous gift.

Bill Ronald, Chairman

GOLDEN FUNDRAISERS Longstanding supporters Herbert and Olive Hughes (pictured above) recently celebrated their golden wedding anniversary and turned it into a fundraising event. Olive is Chair of the Rhyl, Denbighshire volunteer fundraising committee, so instead of receiving gifts from family and friends the couple asked for donations to the Muscular Dystrophy Campaign and raised a wonderful £511.

Olive and Herbert first got involved with the charity in 1977 when they helped to set up the Rhyl branch after their three sons, Ian, Bryan and Colin were all diagnosed with Duchenne muscular dystrophy.

Sadly they lost all three of their sons 20 years ago but have continued to help raise thousands of pounds over the years to help in the fight against muscle disease. Thank you Olive and Herbert and congratulations on your wedding anniversary from everyone at the Muscular Dystrophy Campaign.

DON’T BIN IT, RECYCLE IT! Every year more than two million printer cartridges and 15 million mobile phones are disposed of in landfill sites – and that’s just in the UK. Help stop this waste and raise money for the Muscular Dystrophy Campaign by recycling your old printer cartridges and mobile phones.

If you already have a printer cartridge recycling programme, sending yours to the Muscular Dystrophy Campaign can provide urgently needed funds for research. Just call 0800 652 6352 or email info@muscular-dystrophy.org

Elected unanimously at the charity’s AGM in September, Bill Ronald said of his appointment as Chairman, “I am delighted, honoured and not a little daunted to take up the role.” Reflecting on the needs of his young nephew who has Duchenne muscular dystrophy he says, “This charity funds very important research provides much-needed care and support and gives those affected by neuromuscular conditions a voice to campaign for change. I look forward to working with all involved to ensure we continue to make a real difference.”

Bill holds a portfolio of non-executive directorships with four businesses including the retailer Halfords. In 23 years with the Mars Corporation he became Managing Director of Mars UK and a Vice President of Masterfoods Europe. He takes over the mantle from Professor Martin Bobrow CBE who has been Chairman of the charity for the past 15 years.

TALK OF THE NATION TalkMD, the Muscular Dystrophy Campaign’s online forum is only six months old, but we’re already hearing from hundreds of contributors who have made more than 1,000 posts. Many people who visit find TalkMD is a welcoming place to share their stories, ask questions, encourage members facing hard times, or advise people in the online community about finding the resources they need.

All of our volunteer moderators live with muscle disease themselves, and members find that their knowledge and personal experience encourage valuable discussions about virtually any topic from benefits to bullying. “We’re off to a flying start,” says Sam Butler, the Muscular Dystrophy Campaign’s Online Manager. “It’s largely due to the involvement of our volunteer moderators all who have muscular dystrophy and can relate to members’ experiences. I think that’s really important and gives us a strong foundation to build on.”

Volunteer moderator Sarah Rose (pictured

left), 32, draws on her experience with congenital muscular dystrophy to encourage TalkMD members to get more involved. But it’s her career skills that make her so valuable to contributors. “My background is in education and I also do research for the Citizens Advice Bureau.” Sarah also has broad experience with other message boards like TalkMD. “I have gained a lot from being a member of a number of forums. They can be a marvellous source of information and support and I have found that there is usually someone who knows answers to questions or can point you in the right direction.”

In her view, TalkMD stands out from the crowd. “This forum has the potential to be a powerful resource and a great place to hang out. I am really glad to be part of this community.” Sam encourages anyone to get involved. “Please pay us a visit, and just say ‘hello’. We’re a friendly bunch and there are some inspiring stories here.” Drop in at community.muscular-dystrophy.org and choose ‘It’s my life’ where we welcome people who are visiting for the first time.

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News extra

Trailblazers Special Report On the eve of establishing an All Party Parliamentary Group for young disabled people, Trailblazers have published their fifth and final investigation, covering access to tourism in the UK.

UK holidays exclude many

M

uscular Dystrophy Campaign’s Trailblazers, the group set up to fight injustice faced by young people with muscle disease, has released a study into the accessibility of UK’s tourism industry. The 20 page report All Inclusive? now available from the Muscular Dystrophy Campaign, details the results of undercover investigations into airlines, hotels, tourist attractions, the overall affordability of holidays and disability awareness among members of staff serving the public. According to recent estimates, the tourism industry in Britain is worth £115bn a year, but as the report reveals, many young disabled people are currently missing out on the opportunity to travel independently and holiday in the location and accommodation of their choice. It also reveals that the poor service and complications faced by disabled people on holiday can cause stress, leading to anxiety, uncertainty about planning holidays, and needless isolation.

Not all of the news is bad. “A lot of tourist attractions will try and be as accommodating as possible and helpful when asked for advice,” says Trailblazer ambassador Judith Merry from Alyesbury. But she points out, “Some can be frustratingly clueless.” All Inclusive? is the latest in a series of five reports by Trailblazers, all of which are available on our website or in print.

Other reports published by Trailblazers include End of the Line, investigating access to public transport, University Challenge, covering access to higher education, Calling Time, a study of access to leisure facilities and Right to Work, investigating access to employment.

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Airline lifts restrictions Pressure from Trailblazers has forced easyJet to change its policy on powered wheelchairs over 60kg, which it previously refused to allow on its flights. The airline cited health and safety reasons, despite other carriers allowing power wheelchairs even on short haul flights. After reconsidering, easyJet’s policy now states: “Wheelchairs and mobility aids weighing more than 60kgs (excluding battery) can be accepted for travel provided they can be collapsed into separate parts weighing less than 60kg each. This is to protect the health and safety of our workforce.”

However this revised policy is likely to be impractical for most users of powered wheelchairs. Trailblazer Nina Shlykova who was recently told she could not take her 70kg wheelchair on an easyJet flight, said, “It should be pointed out to easyJet that modern powered wheelchairs are complicated mechanisms. Non-specialists cannot collapse it into parts. I’m genuinely worried that no one will be able to assemble it in a safe way for me.”

Trailblazers continue to campaign for all airlines to allow all wheelchairs on their planes, just as accessible buses, trains and ferries do. Trailblazers Project Manager Bobby Ancil said, “This is a small victory for powered wheelchair users but we would like to see all airlines allow all wheelchairs into the hold.”

Airlines including Ryanair and bmi still do not allow customers to use their own oxygen canisters, instead charging a £100 “tax on breathing” for those who require permanent ventilation.

Young people confront Parliament IN WHAT WOULD be a major victory for people with muscle disease, Trailblazers are close to establishing an All Party Parliamentary Group for Young Disabled People. “There is currently no representation for young disabled people in Parliament, despite young people having wholly different concerns to many adults and older people,” says Trailblazers Project Manager Bobby Ancil.

Paul Maynard, MP has agreed to chair the group, promising to fight hard for the rights of young disabled people and launch an immediate inquiry into the issues they raise. Bobby Ancil says, “Many young disabled people are effectively denied the choices and freedoms that are important to most teenagers, school leavers, university students and young people entering their careers.”

The All Party Parliamentary Group will invite representatives of transport providers, universities and employers to Westminster as well as others responsible for delivering services to young people – allowing the young people themselves to get their voices heard and to play an important role in the parliamentary process.

Feeling any better?

MUSCULAR DYSTROPHY CAMPAIGN is urgently requesting your feedback on your experiences staying in hospital. Were doctors and nurses helpful and knowledgeable in dealing with and treating your condition? Did they understand your particular needs and respond well to any questions or requests you might have raised? Stories of your experiences, good and bad, can inform a new report on how muscle disease is treated in hospital.

Take action Find out more and get involved with Trailblazers by contacting Bobby Ancil.

Bobby Ancil

020 7803 4807

trailblazers@muscular-dystrophy.org

For support call 0800 652 6352

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Crelling Harnesses for Disabled Ltd

We manufacture a large range of belts and harnesses designed to provide postural support for children and adults with special needs. Many harnesses are suitable for those passengers with challenging behaviour or learning difficulties.

Our special needs belts and harnesses are suitable for use with all types of equipment including wheelchairs, scooters cars, buses, aircraft seats and bathing seats, etc.

Vehicle harnesses must be worn in conjunction with the existing safety belt unless the passenger is exempt for medical reasons.

For more information Tel: 01253 852298 Fax: 01253 821780 Email: info@crelling.com Website: www.crelling.com 12 Crescent East, Thornton-Cleveleys, Lancs. FY5 3LJ

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Campaigns New report highlights...

Huge costs but little help A new report by the Muscular Dystrophy Campaign reveals the financial problems faced by families living with muscle disease.

THE MUSCULAR DYSTROPHY CAMPAIGN recently surveyed 650 households to learn more about the financial impact of living with muscle disease. Our report, The Cost of Living with Muscle Disease found that 40 percent of people are struggling to cover the costs of essential utilities like heating, gas and water.

That’s two out of every five households with at least one person affected by muscle disease.

Shockingly high fuel bills Reduced mobility and the need to keep living areas warmer around the clock – combined with the additional electricity used by essentials like ventilators and powered wheelchairs – mean that quarterly fuel bills can rise as high as £1,000. Eighty percent of those responding said the current benefits system is already failing to cover the additional cost of living with a disability.

People with disabilities pay for government cuts THE MUSCULAR DYSTROPHY CAMPAIGN welcomes the news that the Disability Living Allowance will be retained in the Coalition government’s new spending plans. But removal of the higher rate of the mobility component for people in residential care could impact on their independence. Real cuts may be felt in the support received from local councils where spending will be sliced by up to 28 percent.

Social housing cuts could affect thousands of people with muscle disease – currently twice as many people with muscle disease rely on social housing than live in private accommodation. The Muscular Dystrophy

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Households are making tough decisions on housing, food and heating.

Benefits denied to the worst affected The Muscular Dystrophy Campaign is calling for the Winter Fuel Allowance to be extended to people in the most severe category of disability. The benefit currently reaches everyone over the age of 60 regardless of need, and can even be claimed from overseas.

Meanwhile people with a debilitating condition can only claim a Cold Weather Allowance if temperatures drop below freezing for more than seven days in a row.

Carers also feel a sharp financial penalty, earning the equivalent of as little as £7 a day Campaign has already received calls from individuals and families who say disability has forced them into bankruptcy.

New caps on the Employment Support Allowance could further hurt job seekers including young people with muscle disease. Many have persevered and racked up student debt, only to enter a job market

for giving full time care. One parent said, “When your child is diagnosed with a serious condition, financial pressures come from every angle – we even lost our home. Financial hardship is an everyday experience for us.”

When they reach 65, a carer’s allowance is cut off, meaning a state pension is seen as a benefit despite coming from payments made throughout a person’s working life. In a double blow to older couples, people diagnosed with muscle disease after the age of 65 are unable to claim the Disability Living Allowance, which denies them important benefits and treats them as being ‘too old to be disabled.’ stacked against them, with support limited to 12 months. One young woman in the Trailblazers group has been unable to find accessible accommodation at an affordable price, six months after moving across the country to take a job with a care agency.

“When your child is diagnosed with a serious condition, financial pressures come from every angle – we even lost our home. Financial hardship is an everyday experience for us.”

For support call 0800 652 6352

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Campaigns

Health Minister questioned DR DAI LLOYD AM, Chair of the Welsh Assembly’s Cross Party Group on Muscular Dystrophy has challenged Health Minister Edwina Hart, asking what action the Welsh Assembly Government and the NHS in Wales have taken on recommendations made in the Thomas Report, published in July.

Besides urging the recruitment and appointment of the Neuromuscular Care Advisors, one of whom is now in place, Dr Lloyd queried how comprehensive multidisciplinary and specialist services would be commissioned, delivered and sustained over the long term.

The Health Minister has since given the seven Local Health Boards in Wales the responsibility for driving improvements, “to ensure that patients have access to comprehensive multi-disciplinary and specialist services as close to home as is clinically safe.”

Jan Williams, Chief Executive of Cardiff and Vale University LHB will lead the development and planning of neuromuscular services across Wales, beginning with her response to

Fighting your corner BARONESS THOMAS OF WINCHESTER raised serious concerns on the provision of specialised neuromuscular services across the country in a House of Lords debate on health care.

Baroness Thomas, a Vice-President and Trustee of the Muscular Dystrophy Campaign, questioned the Government’s White Paper NHS reforms in relation to the proposed NHS Commissioning Board, concerns over GP commissioning, and the shocking cost of unplanned emergency hospital admissions for neuromuscular conditions.

She paid special attention to the benefits of hydrotherapy for people with muscle disease like Duchenne muscular dystrophy. “The sad truth is that hydrotherapy in this country is better known as a treatment for horses and dogs than for people,” said the Baroness in her challenge to other Lords.

She stated grave concerns that the lives of young men with Duchenne muscular

Wales sees hard-won results

the recommendations contained within the Thomas Report. In addition to a Care Advisor for North Wales and two in the South, the Betsi Cadwaladr University Health Board is considering aligning services with the Mersey region, which is already providing neuromuscular care.

The Muscular Dystrophy Campaign is urging people affected by muscle disease to get in touch to help us take action to ensure we sustain the momentum to see better services delivered to an area that many feel has been long underserved. dystrophy may be on average 10 years shorter than those in other parts of the country, due to a lack of care.

“Currently, many people living with these conditions are denied both essential and specialised care, such as respiratory care, and non-specialised care, such as physiotherapy or hydrotherapy.

It all depends where they live. Not only is that inconsistent access to care needlessly damaging lives and families, but it is costing the Health Service a huge amount of unnecessary money.

It is estimated that the NHS last year spent a shocking £68 million in England on unplanned emergency hospital admissions. Clinical audit data has shown that such admissions could be greatly reduced through the provision of specialist multidisciplinary care.”

Baroness Thomas pointed out that GPs have neither the expertise nor the patient numbers to commission services for such complex disorders, highlighting the need for specialist care to be put in place across the country. The outcome of this debate is a meeting between Baroness Thomas, the charity and Health Minister Anne Milton, MP.

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NEUROMUSCULAR CARE ADVISORS are finally coming to Wales with three posts to be funded by the NHS. Welsh campaigners are already celebrating the first appointment for South Wales, Rachel Salmon (pictured below top). She says, “I am delighted to be taking up this important post – there are over 3,000 people with muscle disease in Wales and so many families I meet are struggling to get the care they need. With the support of other new Care Advisors in Wales, I hope that we will be able to support patients with advice about their condition, as well as helping them gain access to essential services.”

The two other posts soon to be filled in North Wales, Mid and West Wales.

Take action Find out more and get involved by talking to our Director of Care, Support and Campaigns.

Nic Bungay

020 7803 4847

campaigns@muscular-dystrophy.org

www.muscular-dystrophy.org

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Lifestyle

Caption to come

Join the party online If you’re like some of us, it might seem that the ‘social networking’ craze is passing you by. But it’s more than just a trend or time-waster. Like email and the Internet, social networks like Facebook and Twitter are already connecting millions of people to the information they need, fundraising ideas and most important, other people who share common interests and a common goal.

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now it or not, the Muscular Dystrophy Campaign is already leading the way in social networking for people affected by muscle disease. Using Twitter, Facebook, blogs and our new forum TalkMD, the Muscular Dystrophy Campaign is giving thousands of people instant access to networks, news and knowledge that makes life that much easier.

It doesn’t matter if you have muscle disease, or are a family member, friend, carer, doctor, nurse, teacher or physiotherapist. If you need tips on how to cope with everyday issues and obstacles, ideas for getting better access to care, services or employment – or if you just need some encouragement or a bit of light

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relief, look no further. You’ll find the people you want to know and the information you need by spending a few minutes getting to know what we have to offer online.

TalkMD

enthusiastic and supportive voice of people who can help you find the information or help you need.

Our Facebook Page

muscular-dystrophy.org/TalkMD

facebook.com/ musculardystrophycampaign

Our new forum invites your messages asking questions or giving feedback on any of more than 1,000 posts on 143 topics (see story, page 5). If you don’t find what you’re looking for, just ask. You’ll find a thriving community and will meet our friendly and helpful volunteer moderators, all of whom are living with muscle disease and help to form one united,

Those who haven’t joined Facebook cite unfounded fears like “Everyone will see what I’m doing,” and “I’ll spend too much time answering messages.” In fact, Facebook lets you choose whether anyone can see that you are a registered user, and gives you access to our Facebook page, which is becoming a place to encourage information

For support call 0800 652 6352

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Lifestyle about research, fundraising ideas, insight and encouragement.

Once you’re registered, just search for the Muscular Dystrophy Campaign and you’ll find the page that supporter Steve Dyson used to announce and raise funds for his Cardiff to London cycle ride. He also posted some great photos when he finished the race! Other posts have congratulated Zak Hughes, who has myotubular myopathy and in six months progressed from being able to swim only half a length of a pool to swim 11, raising over £1,000 for the Myotubular Trust.

Our Facebook page has also announced NewsNight coverage of our patient survey, updates about research, and helped one young supporter recruit a team of local people to organise fundraising events. Many posts both from the Muscular Dystrophy Campaign and our Facebook friends inspire a warm and vocal response.

Our blogs campaignsmd.wordpress.com mdctrailblazers.org/blogs If you’re looking for expert insights into the issues surrounding muscle disease, our campaigns and Trailblazers blogs are easy for anyone who has access to the web to read and share. More immediate, interactive and hardhitting than standard journalism, blogs are quickly becoming the source to turn to for the latest, most reliable results of investigations.

Trailblazers maintains a particular focus on topics affecting people in their teenage years as well as young adults, including people in higher education and careers. And our campaigns blog invites comment from people who are seeking changes in every area including medical care, service provision, access and the law. You can even start a blog yourself about your own experiences with muscle disease. There are many services available, most of which are free including blogger.com and wordpress.com. Let us know you’re there, and we’ll keep in touch.

Twitter Twitter.com/TargetMD .../EventsMD .../CampaignsMD .../Kelvidge Everybody’s tweeting about it, and you don’t have to listen to Stephen Fry go on about his life unless you really want to. Just visit the website above, and if you’re already on Twitter, you can sign in – or it’s free to sign up and follow any or all of the Twitter profiles above to receive short, timely messages on your computer or phone about every aspect of muscle disease, treatment, services and care.

We also recommend you follow Dr Kristina

Elvidge, our Research Communications Officer who frequently shares her expert knowledge of the latest research and developments in the treatment of neuromuscular conditions.

You might also find compelling messages like this one from a young man with muscle disease. “When I was diagnosed with Muscular Dystrophy, I thought it meant I was dying.

Target MD taught me to live.” You can also help connect new users or supporters to Muscular Dystrophy Campaign, like the young man who tweeted that he’d attended a research seminar on neuromuscular conditions and through our re-tweets learned about Muscular Dystrophy Campaign for the first time.

My Online World myonlineworld.org.uk Created especially for children under 13 – with a separate tailored user experience for the over 13s – My Online World is a great place where kids can talk in an expertly monitored

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Site Safety environment. Users catch up on the latest competitions, games, music, movies and television that the younger crowd want to know all about. Far from being a serious discussion group about muscle disease, My Online World is chatty, positive and fun, with the background element of providing the information, friendship and support you need, when you need it.

Get involved, however you can Of course, our website is still here as always and even includes free back issues of Target MD. And if you don’t have a computer all our services are still just a phone call away. We might even be able to connect you to a service where you can get a computer and internet access at a price you can afford. We’re always here for you – now with even more resources and friendly, informed people at your fingertips and ready to talk.

www.muscular-dystrophy.org

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Research

Muscle Centres in the UK – forerunners of multidisciplinary care in Europe

The Institute of Child Health in London- The Dubowitz Neuromuscular Centre is part of the Institute of Child Health and Great Ormond Street NHS Trust.

The International Centre for Life in Newcastle, part of which houses some of the Newcastle Muscle Centre.

Many debates in Europe currently centre on what criteria clinical centres for rare diseases need to meet in order to warrant the classification “Centre of Excellence”. However, thanks to crucial funding from the Muscular Dystrophy Campaign, Muscle Centres in the UK are not only leading the way in Europe by providing model frameworks for the delivery of high- quality care and research, but have also established themselves as world leaders in their area of expertise.

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he investments the muscle centres in London, Oxford and Newcastle have received have enabled them to establish a critical mass of staff and to build and maintain a wide range of multidisciplinary clinics for people with a neuromuscular condition. The funding includes support for clinical training fellowships, which offer junior doctors the opportunity to obtain specialised training in muscle disease diagnosis and management, and to be involved in ongoing research projects. The aim is to ensure a continuing pipeline of well trained doctors who can understand neuromuscular conditions.

Here the centre directors talk about the impact that the charity’s investment has had for them and the current clinical fellows share their experience of being part of a multidisciplinary team.

Prof Kate Bushby, Newcastle Muscle Centre Newcastle Muscle Centre has been receiving funding from the Muscular Dystrophy

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Campaign for almost 50 years. This funding has allowed the centre to pump prime the employment of staff, who were later adopted by the NHS or other funding streams. This has enabled us to build a team that can provide high standard multidisciplinary care along with a range of excellent diagnostic testing facilities. This long-term support has been the basis for the development of a national diagnostic and advisory service for very rare neuromuscular diseases, which gives access for patients from across the UK to specialised help in limb girdle muscular dystrophy, for example.

Dr Tracey Willis is the current clinical fellow at the Newcastle Muscle Centre. Here she talks about her research and day-to-day work.

What is your research project about?

My main research project is looking at MRI scans and their use in limb girdle muscular dystrophy. Over a two-year period all 38 participants – from the UK, France and Denmark – have two MRI scans alongside

physical measurements such as testing muscle strength. I am comparing the results of the MRI scans with the physical assessment data to find out whether this tool would be useful as a non-invasive and objective measure to detect muscle wasting over time. However, in future this tool may also be used in clinical trials as a non-invasive way to monitor the effectiveness of potential treatments.

What are the best aspects of the Muscle Centre where you work?

Newcastle Muscle Centre is extremely busy, bridging research and clinic. As a fellow here you have the opportunity to learn about basic science and meet patients with a wide range of different muscle conditions. The Muscle Centre is unique because we follow up both children and adults, so there is continuity for the patients and we have the advantage of seeing what happens to the children with these rare conditions as they make the transition into adulthood.

For support call 0800 652 6352

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Research What is your favourite part of the job?

The best aspects are definitely the patients and the difference we make to their levels of functioning by what we can offer. Within my research I am seeing exciting results that may lead in the future to some positive contribution to finding an effective way of managing these challenging diseases, whether that be in monitoring or in treatment.

Left to right: Prof Kate Bushby, Dr Tracey Willis, Dr Reghan Foley, and Dr Stefen Brady.

Prof Francesco Muntoni, the Muscle Centre in London

the condition might progress. It also enables us to offer genetic counselling information to patients and their families.

The Muscle Centres at Great Ormond Street Hospital and the Institute of Neurology in London see over 5,000 patients each year. A dozen dedicated consultants working at the centre ensures that the clinical fellows receive excellent training for a range of very rare neuromuscular conditions and former Muscular Dystrophy Campaign funded fellows are now the neuromuscular lead consultants in several UK hospitals. The centre provides services for children and adults with neuromuscular conditions as well as a specialised national diagnostic and advisory service for a number of very rare conditions. Combining the clinical and research aspects within one centre contributes to a speedier bench-to-bedside transition of new potential therapies.

Dr Reghan Foley, originally from the US, is currently working with Prof Muntoni in London. We asked her about being part of a team of world-leading experts.

Why did you choose to work in the field of neuromuscular conditions?

My inspiration for entering the field of neuromuscular conditions was the indomitable spirit of neuromuscular patients.

My first encounter with that unmistakable spirit was through a close childhood friend who courageously faced the challenges of Duchenne muscular dystrophy, pursuing his dreams including that of attending law school.

What are the biggest challenges of your job?

I think the biggest challenge of my job is that of successfully arriving at definitive diagnoses for our patients. For many paediatric neuromuscular conditions, the precise genetic causes are elusive or even unknown. Obtaining a genetic confirmation of a paediatric neuromuscular condition is important for diagnostic purposes and to allow us to to provide information on how

What are the best aspects of the Muscle Centre where you work?

I feel honoured to be able to work with such a talented team of clinicians and researchers here. The Dubowitz Muscle Centre, Great Ormond Street Hospital, offers tremendous opportunities for research collaboration and dialogue between basic scientists and clinical researchers. Furthermore, being part of a translational research centre – the MRC Centre for Neuromuscular Diseases – offers the ideal setting for facilitating the progress of promising technology into a clinical context.

Dr David Hilton-Jones, Oxford Muscle Centre The Neuromuscular Centre in Oxford comprises two clinics – the neuromuscular service and the myasthenia service. The centre provides a comprehensive diagnostic and management service for people of all ages with nerve and muscle disorders. In addition to the well-known muscular dystrophies the centre has a major reputation for the management of acquired disorders (e.g. myasthenia gravis and myositis) which are particularly important because they can be treated.

The Oxford Myasthenia Centre has an international reputation for clinical and research excellence, and includes the national diagnostic and advisory service for congenital myasthenia. Part of the national mitochondrial diseases service is also based in Oxford.

The current clinical fellow is Dr Stefen Brady and below he gives a short summary about his research.

What is your research project about?

My research is on inclusion body myositis (IBM). It is a muscle condition usually affecting those over 50 years of age, with predominantly hand and thigh weakness.

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Currently there is no treatment for this slowly progressing condition.

Criteria to help doctors diagnose IBM have been around for some time. The criteria combine the patients’ examination findings and the changes seen in the muscle biopsy.

We know that some patients who have IBM do not have all the necessary biopsy findings to make the diagnosis definitively and many new findings in the muscle of patients’ with IBM have been described. What we are initially trying to do is to see if any of these new findings can help improve the diagnosis.

Do you think this research might lead to a treatment?

Yes I hope so, though it is in a roundabout way.

If we can make the diagnosis of IBM earlier and with greater certainty then more patients would be eligible for trials of new treatments.

What are the best aspects of the muscle centre where you work?

The clinical team I work with at Oxford has been great. They were very welcoming and their enthusiasm and commitment to working with those affected by muscle disease has been very motivating.

Clinical Trials Co-ordinators Translation of promising treatments and technologies from the bench to the bedside requires more than simply clinicians and scientists working together.

In the London and Newcastle centres, the charity is supporting the post of clinical trials co-ordinator. There is a great deal of excitement about the new trials that are coming along in muscle diseases, but it is important to recognise that doing clinical trials carries a significant level of work requiring specific expertise. Having access to specialised trial co-ordination means that the bureaucracy necessary to get approval can be done smoothly facilitating the whole process and providing access to trials to patients from the UK.

www.muscular-dystrophy.org

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President’snews Research awards

Research news from around the world EXON SKIPPING CLINICAL TRIAL FOR DUCHENNE MUSCULAR DYSTROPHY ENTERS NEXT PHASE The Dutch pharmaceutical company Prosensa and GlaxoSmithKline (GSK) have announced that they have started treating the first patient enrolled in the international phase III clinical trial that will further test the safety and effectiveness of exon skipping technology. The molecular patch being tested in the trial could potentially be used to treat approximately 13 percent of Duchenne muscular dystrophy patients.

The trial aims to enrol 180 boys over five years of age who are still able to walk. Trial centres conducting the study will be in up to 18 different countries. Participants will be given a weekly injection under the skin for 48 weeks. If this trial is successful, GSK will then be in a position to apply to regulatory bodies for permission to market it and make it more widely available.

CARE GUIDELINES FOR CONGENITAL MUSCULAR DYSTROPHY PUBLISHED A team of 82 international experts has published guidelines to help clinicians deliver consistently high standards of care to individuals with congenital muscular dystrophy and their families. The document outlines recommendations for the many

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aspects of multidisciplinary care required by patients including neurology, managing breathing and heart problems, nutrition, orthopaedics and palliative care. The new guidelines will also be a valuable tool for people lobbying to improve the standards of care received by people with congenital muscular dystrophy.

BREAKTHROUGHS IN UNDERSTANDING FSH International scientists have moved forward in great leaps and bounds with the recent publication of two landmark papers which report breakthroughs in understanding facioscapulohumeral muscular dystrophy (FSH). These are critical advances because although the genetic mutation causing FSH was identified nearly 20 years ago, scientists have struggled to understand how the mutation causes this complex condition.

FSHD is caused by changes to a region of DNA on chromosome 4 called D4Z4. The first new research paper reported on new insights into how this DNA change results in the production of a protein called DUX4 that is toxic to the muscles. The second study looked in more detail at the DUX4 protein and found that different versions of the protein can be made, and that people with FSH produce a version that is toxic when produced in the wrong cells at the wrong time.

It is still not fully understood what the function the DUX4 protein is and why certain versions of the DUX4 protein are toxic and researchers will continue to investigate this.

Understanding the cause of FSH is essential for the development of treatments and this new research has already highlighted a target which researchers, including those funded by the Muscular Dystrophy Campaign, can now take advantage of to potentially start developing a therapy for this condition.

OUR RESEARCHERS IN LONDON ADVANCE EXON SKIPPING RESEARCH Research funded by the Muscular Dystrophy Campaign in Professor George Dickson’s laboratory at Royal Holloway, University of London has recently resulted in the publication of two papers detailing exciting new results relating to the exon skipping technology which is currently in clinical trial for Duchenne muscular dystrophy.

The first study examined the long term effects of exon skipping for the first time, providing further evidence of the great potential of this technique. The researchers gave a mouse model of Duchenne muscular dystrophy repeated injections of a molecular patch and found that even the low dose tested was beneficial when given over a long period of time. The protein that is missing in Duchenne muscular dystrophy – dystrophin – was restored and muscle strength was improved. Prof Dickson’s research will be important for informing future clinical trials which dosing levels to test.

A second study by Professor Dickson applied exon skipping technology in a new way which could be used to treat a range of muscle diseases. They showed for the first time that it might be possible to use exon skipping technology to block the activity of myostatin, a protein that prevents muscles from growing bigger and stronger. This approach, which was tested in mice, is attractive because it may be a useful way to “bulk up” muscles in people with muscle disease, helping to increase their muscle strength. This would most likely be of maximum value when used in conjunction with other treatments that address the genetic defect.

For support call 0800 652 6352

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Care support

Get the help you need We often hear from people who want to know what benefits they’re entitled to – or are struggling to make sense of the confusing array of agencies and applications.

O

ne of the best things to do is to start asking questions now – about issues you will face in the future. Waiting lists can be years long. The Citizens Advice Bureau is your best place to get started – but if you’re looking for people who have experience with muscle disease, consider posting a question on TalkMD, our new forum (see page 4). Or feel free to call our team.

While we can’t provide personal benefits assistance, we can help guide you to the organisations who can.

Housing We are already seeing fruitful discussions on TalkMD about housing benefits. This is one place where it can be especially helpful to start thinking now about what you might need in a few years’ time. Talk to your local council about Housing Association schemes in your area and find out about any new builds. Don’t be discouraged by news of budget cuts – much work is continuing, or is too far along to be affected by last autumn’s Comprehensive Spending Review.

Websites like housingnet.co.uk may have the information you need.

Also, it’s wise to tackle the housing giant from every angle. Find out if you have a community Occupational Therapist (OT) who can visit and assess your needs at home. They may not be able to find suitable accommodation immediately, but can provide adaptations and equipment to make life easier, while producing reports that move

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your name forward in the queue.

One member of TalkMD got in touch with her community OT who visited to address her needs, and produced compelling results.

“She has had extra storage fitted for me, grab rails where I needed them, supplied a rising reclining armchair, a perching stool, an elevated seat for my toilet, raised my sink and draining board – and because my condition has progressed she has put me in touch with the wheelchair service who supplied me with a power chair too. The power chair itself has created more problems because it doesn’t fit around the home I’m currently in. So, now the lady from the wheelchair service together with the community OT are doing a report to submit to the housing trust again insisting I am moved to a bigger bungalow.”

The housing trust themselves haven’t been much help but my community OT is absolutely invaluable, and making contact with a specialist near you to throw some weight behind your needs, especially if you’re going to approach your local housing authority. I had to find out about my community OT for myself by making some phone calls. Nobody told me who could help me or to what extent.”

Disability Living Allowance The Disability Living Allowance (DLA) was saved from cuts in the Comprehensive Spending Review, but our Information and Support Coordinator, Claire Kelleher, often hears from people who are not getting it and are unsure what they are even entitled to.

If you are older, be aware that you may find it harder to get help. “One older man was diagnosed almost a year ago,” says Claire.

“But the last I heard he had yet to receive any benefits, and his application for Disability Living Allowance had been rejected.” If you are among the many who were diagnosed with muscle disease after the age of 65 you are considered to be earning “replacement benefit” through your state pension, and are denied benefits that should be available to everyone. Our campaigns department continues to press for fair treatment for all.

If you need help applying for a DLA visit www.disabilityalliance.org or visit www.dialuk.info to find your local DIAL (Disability Information and Advice Line).

Also look into the Lisieux Trust www.lisieuxtrust.org.uk and Advocacy Matters www.advocacymatters.co.uk

Employment “I also spoke to someone who was unaware that the Access to Work scheme could provide funding to adapt his work place,” says Claire Kelleher. Employers and even potential employers are required to make reasonable adaptations. Find out more at directgov.uk (choosing ‘Straight to... Disabled People’) where you’ll also find a variety of other schemes offering help for people with disabilities who are in employment or seeking employment.

Be warned about changes in the Employment Support Allowance. From now on, if you have a working partner, assets or savings and have worked in the past, you will have only one year to find a job or lose your entitlement to state benefits. It’s not good news for people with muscle disease who may have worked in the past, but whose conditions worsen over time.

Other Benefits If you look after someone who is disabled, you may be entitled to a Carer’s Allowance.

There is no requirement that you be related to them or live with them. Find out more on www.directgov.uk (choosing ‘Straight to... Caring for Someone’). As always, we encourage you to share your stories, either by sending us an email, or posting a comment on TalkMD, or do feel free to give us a call so we can share your insight with others.

If you feel you need counselling, it’s free through the NHS. For more information, go to www.nhs.uk/livewell/counselling. You may also want to talk to Support Line at www.supportline.org.uk or the Samaritans www.samaritans.org.uk

For support call 0800 652 6352

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Care support

Moving forward together Living with MD and Trailblazers have joined forces, looking for a vibrant exchange of ideas – and to help develop greater peerto-peer support for younger people who for the first time are taking on challenges faced by adults with muscle disease.

T

he Living with MD Transitions project promotes interaction and discussion on how to smooth the transition from childhood to adulthood for people with muscle disease. Findings of the Muscular Dystrophy Campaign’s report, State of the Nation revealed that half of people with muscle disease living in London rated the services in their transitional young adult years as either poor or very poor.

Until everyone with muscle disease has access to the services they need, peer support will remain one of the best ways to confront and overcome the many problems young adults face as they try to maintain a better level of care, take up higher education, access needed benefits, move into independent living and begin their careers.

The Living with MD network has an excellent track record of bringing together previously isolated adults living with muscle disease – and today, individuals, carers, partners and families meet regularly to share experiences, develop a vital peer-to-peer support network and build up each other’s confidence in managing their conditions. Soon to join them, Trailblazers, aged 16-25 have until now maintained a special focus on investigating and campaigning for better services, access and care.

Joint meetings for the groups will draw on the experience of adults with muscle disease to introduce younger Trailblazers to:

• Finding the right information and support at the transitional stage into adulthood • Accessing and covering the cost of physiotherapy • Getting the support they need from the many new Care Advisors across England and Wales, now funded by the NHS • Understanding how to access improved wheelchairs, and incorporate them into their homes, which may require adaptation • Ideas for developing on skills learned in past Trailblazers investigations in their future career and campaigning efforts.

As in the past, Living with MD will encourage Trailblazers to take steps to ensure a better life and greater freedom in the future, covering topics like: • Developing life maps and your journey with muscular dystrophy • Dealing with change, a big aspect of moving into adulthood • Managing emotions and relationships • Creating daily routines and learning practical tips • Accessing professional care • Thinking about the future.

The overall aim is to help adults – and their younger counterparts – to take more control over their own treatment and lives. Often this is a matter of determination and confidence, two things that can often only be gained through conversation with people who have faced and overcome similar struggles in the past.

Paul James an advocate for Living With MD Day.

Meet a member of the Living with MD steering group Paul James, who has limb girdle muscular dystrophy “I joined the steering group at a crossroads in my life where I felt a change was due. As a father and having been married, I have an understanding of the difficulties, pleasures and pressures of family life. I have been in relationships with able-bodied people and I am currently in a relationship with a disabled partner. I live on my own and despite the problems that entails, I also have care support and a good understanding of the benefits of various services. I feel I can impart some of my knowledge, experience and observations of life to help others that may face similar challenges, but also share the pleasures and positive aspects that come handin-hand with muscle disease. Although we all come from different backgrounds and lifestyles encompassing the entire spectrum of society, we all share common milestones in our individual journeys and it is those aspects I discuss in Living with MD meetings in a way which breaks initial barriers enabling attendees to associate and engage with each other.”

Contact us If you’d like advice on where to get the support you need, contact our Information Coordinator.

Claire Kelleher

020 7802 4805

c.kelleher@muscular-dystrophy.org

Trailblazers and Living with MD Days combining resources and activities.

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www.muscular-dystrophy.org

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Care support

One day in your life Sue Gallagher reflects back on how her workday has changed, now that the NHS has agreed to fund her role and pay for three other Care Advisors in the West Midlands.

8.02am I usually start my day by checking the telephone messages that have arrived overnight. Occasionally a child will have been admitted to the hospital overnight, or parents will leave queries on my voicemail out of office hours. Right about the same time, I check my emails. It’s not unusual to find messages coming in at one or two in the morning when a busy parent is still awake and finds my contact details.

I may also find messages from a physio in the community. Occasionally a school will call asking how they can best address the physical and educational needs of a child with muscle disease. Professionals will also call asking about the condition, which is not surprising considering that even doctors and consultants have a general knowledge of muscle disease, but lack truly specialist knowledge.

9.27am Time to visit the children on the ward. Often, this is just to say hello and let people know I am here when they need me, but many people will have needs or questions right away. A family may be requesting a mattress that makes a child more comfortable or a profiling bed that a child can use to turn onto their side without help.

If the young person has Care in the Community, sometimes the carer is able to come into the hospital and can debrief me on particular needs and take advice on how to help more at home.

10.41am I’m now heading off to one of the four clinics that I run every week – and these might happen at any of four hospitals across the West Midlands. I always try to look to see who

18 TargetMD

has replied saying they are coming, and think in advance about the issues I know they will raise. Often there is not as much time at these clinics as you would like to be able to spend individual time with each and every family, so preparing in advance always helps.

Of course I always try to make myself available to parents on the phone or by email.

Even if I am heading out the door for another appointment, I always promise to follow up, and I do.

Parents most often contact me because something has changed or they have received bad news. They will want to know about the impact of their child being put on steroids, or they have heard that their child has scoliosis. I talk through with them any issues that would cause anyone to say “Oh my goodness. What does this mean and what should I do now?”

I try to reassure them that I’ll be here to pick up the pieces, let them know if a home visit is needed and just help them sort out how they need to respond.

12.32pm During a quick lunch at my desk, I have a few minutes to plan ahead and think about how the new West Midlands Care Advisors and I will work together. I have a background in social work, but that has always been in a hospital and my work has always been with the under 25s. Ideally, when we are all in place, we will have a Care Advisor with a background in physiotherapy, one who has expertise in occupational therapy, and also a specialist nurse.

I’m just managing to respond to the request of most families in the area who have children with muscular dystrophy, but the Care Advisor role is only just beginning to serve adults in the West Midlands.

1.52pm I just got off the phone, and it made me realise why I’m so glad we are taking on additional Care Advisors. The caller is an adult and asked about hydrotherapy. I can do ‘sign-posting’ which is mostly giving people the best advice I can about where to look for the answers, but considering I am focusing so much on children and young people with muscle disease, that’s about as much as I can fit into my current role.

There are so many children on my database!

Hopefully the new Care Advisors and I will be able to write up a list of all the clinics we would like to cover and break up the work according to our separate skills – so that we don’t leave anyone out.

3.18pm I’m responding to an email from a school about a boy with Duchenne muscular dystrophy. He is lashing out at his peers and they want to know how to best respond in light of his condition. It reminds me that last week a school got in touch about a student because they wanted to talk through ways to get him more involved in PE.

4.47pm Another family called – they just wanted to get in touch for the first time. They need to know that I’m here and available to help whenever they need me. Now, before I go home, I must check that inbox and voicemail one last time to ensure I try to reply to emails and phone calls from concerned parents before I leave for the evening.

Contact us Get in touch with someone near you who understands.

Just call Peter Lawson at MD Links, part of our Care, Support and Campaigns team.

Peter Lawson

0800 652 6352

peterl@muscular-dystrophy.org

For support call 0800 652 6352

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16/02/2011 15:56

Fundraising Join the 4,000 runners and raise money.

The Oxford Town and Gown combines running and fundraising in picturesque Oxford.

Have gown, will travel Considering it’s been the talk of Oxford for the past 30 years, we’re thrilled to see the Town & Gown 10k run expand to Cambridge this year, as supporters urge academics and locals to run for fun and fundraise for the Muscular Dystrophy Campaign.

A

s long as it stays friendly, a little healthy competition between university types and local people never hurt anyone – which is no doubt one reason for the popularity of Oxford’s Town & Gown run each May. This year, the Muscular Dystrophy Campaign stands to gain even more much-needed funding through the efforts of participants in the first-ever Cambridge Town & Gown. And it’s not too late to sign-up.

David Basham has been participating in the Oxford Town & Gown for years – but when he was called on to organise the event he drew on the talents of other members in his local running club. “The most important advice I can give is to first plan out a route.”

David suggests this is the most important aspect of planning any such race, considering Oxford and Cambridge offer access to some of the most beautiful architecture and urban

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landscapes in the country.

“The enthusiasm for the event comes from people who aren’t necessarily your typical runners,” says David. “They do it for the cause – and because it’s so enjoyable to run through one of the most fantastic parts of Oxford. And whether you attend the University or live in the area, it’s much easier to travel here than it is to travel to the London Marathon or the Great North Run.” Planning the running route must go handin-hand with approaching the Highways Department, the biggest question being whether they will allow the roads to close for the duration of the race. Next, the local council has to be on board. Equally important is the input of the local press, who prove to be the best way of publicising and advertising the event. Promotion and articles in the town newspaper in the weeks leading up to the event – with results and pictures published

afterwards – are as effective as posters, advertisements and leafleting. “The Oxford Mail has been a big supporter. With more than 3,000 people finishing last year and around £100,000 brought in through sponsorship, it’s amazing how much you can do through the local people you already know.”

David also encourages groups of people sponsoring runners to get involved, manning water stations or acting as wardens on the day. “It’s a great way to build team spirit and cheer on the runners you’re sponsoring.”

Running through one of the country’s most beautiful cities is a unique privilege, which is why David will be glad to see Cambridge get involved, “If Oxford can do it, you can too!”

To find out more about registering for any or all of our running events, visit www.muscular-dystrophy.org/get_ involved/fundraising_events

For support call 0800 652 6352

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Fundraising

Enter a whole new world Imagine a safe, inviting online site for children and young people living with muscle disease. One that’s informative, packed with games and full of friendship and fun. Could you create a world like this?

Anna Krahn can!

“Actually I didn’t create My Online World,” says Anna Krahn, 28, from Brighton. “It was already up and running when I read back in July that they needed a volunteer online editor.

I decided it would be a nice change from

my usual work as a freelance digital writer and editor for the entertainment industry.”

Of course, My Online World is no stranger to entertainment. “Girls who visit the site like to comment on the profile of the young Canadian singer Justin Bieber I posted there recently. There can be a lot of conversation about boys, teachers and homework.”

The boys who visit the site may be more interested in the games they find there, like Skate City and Fish Food, both the result of a

MDC TargetMD Winter 2010 2nd AW.indd 21

competition to come up with the best new game idea.

One of the great things about My Online World is its easy-going approach to muscle disease. “Most of the people visiting don’t mention muscular dystrophy,” says Anna. “I see My Online World as a way to get children talking and offering interesting content that they might find useful.” Talking about muscle disease is woven into the subjects any child would talk about. “They talk about achievements they’re proud of and obstacles they’ve had to overcome. Bullying is an issue that comes up frequently, as well as the feeling of being left out.” These emotions are not unusual but can be more pronounced in children with muscle disease. “They don’t want to be defined by muscular dystrophy,” says Anna. “They really do want to be more involved with their peers and I hope we can suggest ways to do that. They want to help each other.”

In the meantime, reviews of shows like X Factor and Britain’s Got Talent seem to keep a buzz going. “I’m really glad to be involved with the Muscular Dystrophy Campaign,” says Anna, who has a friend with muscular myopathy.

“As an online journalist, I’ve had the chance to do a lot of really fun stuff. It’s great to still be having fun while working for such a good cause.” Visit My Online World at www.myonlineworld.org.uk

www.muscular-dystrophy.org

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Fundraising

Putting the fun into fundraising is Drew Turnbull and his son Stuart.

Be an influential fundraiser Volunteering a few hours of your time on a regular basis is all it takes to have a major impact on the lives of people with muscle disease. Meet two volunteer fundraisers who are doing just that.

Longstanding friends and supporters “FIRST AND FOREMOST, have fun yourselves,” says Drew Turnbull about joining or setting up a Muscular Dystrophy Campaign volunteer fundraising committee. Drew, a Chartered Accountant and financial consultant in Perth, has been participating in fundraising events ever since his son Stuart was diagnosed with Duchenne muscular dystrophy 28 years ago.

“We get together and really enjoy the time.

The focus is on making it fun to come up with great fundraising events.”

For Drew and his committee, taking an easygoing approach to fundraising accomplishes just as much and makes life more enjoyable.

“We are all friends I suppose. Some are involved because of direct family connections to muscular dystrophy, but 50 percent are just friends.” Drew feels things are always better if they don’t seem too much like hard work. “If there’s a committee meeting coming up and you think, ‘Oh, I don’t want to go...’ you have to stand back and think about doing it with people you enjoy being with.”

Drew’s first fundraising event was the London Marathon, the year his son was diagnosed. Since then he’s done the Glasgow Marathon and an abseil off the Forth Bridge.

For years, the committee ran a fair in the Perth City Hall, and they still host a quiz night that raises hundreds of pounds. Because they’ve

22 TargetMD

taken the time to develop relationships, the photographer from the local paper often turns up at events. “Or if someone wants to run a marathon, they call us first.” Using the fun and easygoing approach, Drew and his committee have raised funds not only for the national cause but for local people too, providing wheelchairs, special bedding and adapted bathrooms for people in the area. Grant giving bodies also chip in, like the Pilkington Trust.

It’s an impressive achievement considering they focus on fun. “It’s all about the attitude you take.”

muscular dystrophy has spent time campaigning in the past, but was keen to start using his business acumen to raise funds. “My family have spent a lot of time trying to get more attention from the NHS and to secure better neuromuscular services all around.

We’ve made great progress by getting new Care Advisors assigned to the South West, but there’s still more we can do.”

Khurm and his team plan to anchor their fundraising with four large events every year, slotting in smaller events around them as committee members have time to plan. They’re looking forward to an event next month when local celebrity chefs will whip up meals for 120 people in the style of “Ready, Steady, Cook.”

And 180 people are expected at their Authentic Indian Banquet dinner in March. Everything they do has an ambitious target, including the Four Course Classic for which Khurm is recruiting 96 players to raise £30,000. It’s about staying focused. “I’m fortunate that a lot of my business partners colleagues, clients and family are aware of muscular dystrophy and glad to lend a hand. They are happy to do anything they can to raise awareness and money.”

Amaan and Auzair from the Bristol and Bath fundraising team have a businesslike approach to fundraising.

A new team with some great ideas “We look at everything we do from a business angle,” says Khurm Arshad, who owns construction and social housing businesses in the Bristol area, as well as a business consultancy. Not one to let the grass grow under his feet, Khurm started his fundraising committee with two people in August and within three months there were 10 to 15 people regularly attending meetings and chipping in ideas for new events. “If we have three hours to spend, we’ll think about how much we can raise. Will three hours contacting local businesses and asking them to get involved raise more than holding a collection tin? If we think it will, that’s what we’ll do.”

Khurm, whose brother Auzair has Duchenne

Every hour of raising funds is time well spent – so if you have some ideas of your own, get in touch with your local volunteer fundraising committee or round up some friends to plan your own challenges and events. For expert help and advice – or to let us know your plans – drop us an email at volunteerfundraising@ muscular-dystrophy.org or call our fundraising Hotline 0845 872 9058.

For support call 0800 652 6352

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our website at Superstore purchase made fr ForVisit every Mobility www.affiliates.themobilitysuperstore.co.uk// .themobilitysuperstore.co.uk 5% of the sale value will uid/targetmd M.S. MATTERS - MULTIPLE SCLEROSIS SOCIE the home of solutions for independent living, and for every product you purchase 5% of the sale proceeds, net of VAT, will be paid to the Muscular Dystrophy Campaign

For any enquiries, call our team on 0845 505 5111

The Mobility Roadshow ...driving mobility forward

30th June,1st & 2nd July 2011 East of England Showground, Peterborough The UK’s original hands-on event, showcasing mobility innovation for over 25 years

Open 10am daily Free admission & parking

Be inspired - new ideas for YOUR independent lifestyle Feel the experience - test drive vehicles, wheelchairs, powerchairs and scooters, plus a wealth of ideas for home, leisure and much more Meet the experts - advice and information to answer your questions Join in - sports, cycling, demonstrations and activities for all the family

To register for your FREE tickets visit www.mobilityroadshow.co.uk or call 0845 241 0390

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Fundraising

We’d like to see you...

s e i v o m e h At t Join Michaela Hollywood for a fun new way to raise funds.

THE MUSCULAR DYSTROPHY CAMPAIGN is rolling out their red carpet, a star-studded new idea linking fundraising with their favourite films. All you have to do is register and we’ll send you a fundraising pack full of ideas and everything you need to organise a fantastic event that your friends and family will really enjoy.

You can choose from any of five film-themed fundraisers – or create your own silver screen soiree.

MOVIE NIGHT Organise a film screening asking for a donation in return for a ticket. Add some glamour by suggesting people dress like the characters in the film you show.

FILM CLUB Request a regular donation from a group of friends who select films to watch and discuss. Consider taking turns to choose the film and host the gathering.

DRESS LIKE A STAR Gather friends in your workplace to dress up like movie stars. Ask everyone to make a donation, or to sponsor the brave few who come in to work looking fabulous.

County Down Trailblazer Michaela Hollywood couldn’t have a better name to inspire friends and family to join her in film-themed fundraising. She’s currently talking with her local cinema about a film screening to benefit the Muscular Dystrophy Campaign. “I’d like it to be the opening night of a new film,” says Michaela, a big fan of Harry Potter, the Twilight Series, Pixar and Disney.

“I especially like Tim Burton because of his representation of disability,” says Michaela.

“He’s not scared to show us in a good or evil light, and that’s refreshing in the film industry!”

No stranger to publicity, Michaela has dressed as a box of popcorn for a parade and spoken on her local radio station. When asked what film character she might dress up as to do further fundraising she says, “I don’t have anything planned as yet, but I would love to do something clever!” Sounds like it will have to be from one of the long list of her favourite films including Avatar, Independence Day, Toy Story, Invictus, Inception and Miracle on 34th Street. “British films are amazing. Harry Potter is British and people sometimes forget that.

Sometimes you can’t beat a decent Hollywood blockbuster, though.”

ULTIMATE FILM QUIZ

MOVIE THEMED PARTY

Included with your fundraising pack, our Ultimate Film Quiz can kick off a quiz night.

Ask friends to form teams and make a donation to enter the contest.

Take inspiration from Hollywood and host a glamorous movie-themed party. Hand out your own Oscars or plan a black-tie premiere, complete with paparazzi.

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With a name like Hollywood, it’s only natural to be a film fan.

It’s easy to register for At the Movies. Just visit www.muscular-dystrophy.org/movies for news, reviews and competitions or call 0845 872 9058. Start planning today – we wouldn’t want you to miss your big opening night!

LORD ATTENBOROUGH LENDS HIS SUPPORT “Acting has brought me so much pleasure over the years, so I can’t think of a better way of raising money for the Muscular Dystrophy Campaign than to pay tribute to the wonderful, colourful world of film.

I hope that everyone is inspired to join in and pay homage to their favourite actor or movie in the name of a charity that is so dear to my heart.”

For support call 0800 652 6352

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‘Putt’ your money where your mouth is

Celebrating past golf games, Ian Simpson is now asking the clubs he knows to host golfers participating in the 2011 Four Course Classic.

Ian Simpson has used his gift of the gab to convince golf courses to host this year’s Four Course Classic.

The top prize for this year’s event is a three-night stay at Spain’s luxurious five-star Hotel La Manga Principe Felipe in Murcia. This fantastic prize has been kindly donated

by Golfbreaks.com.

H

e may not play golf anymore, but Ian Simpson has a score card to be proud of when it comes to convincing golf courses to host the Muscular Dystrophy Campaign’s Four Course Classic fundraising event in June. “The Muscular Dystrophy Campaign was not one of the charities I supported, until I actually got it and self-interest kicked in,” smiles Ian. “I’m absolutely delighted to have done anything to help.” When asked whether he’s disappointed that muscle disease prevents him from participating, Ian jokes, “I’m quite lazy, so I had a good excuse not to get involved!”

Instead, he wrote letters to his friends at golf clubs asking if they’d free up their fairways for golfers wanting to play 72 holes in a single day to support the Muscular Dystrophy Campaign.

Head of Events Dave Boorman points out that the persistence of Ian and other supporters has really paid off. “We have an amazing network of 500 clubs that are willing to host teams participating in the Four Course Classic. Last year, we had enough teams of golfers to play 200 of those courses. So I’d really like to see more golfers playing more of those courses.” To make it easier for more people to participate, the Four Course Classic is introducing a ‘half marathon’ this year, of four nine-hole courses.

Plus, the team have lined up some of the UK’s top courses, including Open Venue Turnberry and Ryder Cup venue Celtic Manor.

The event raised £55,000 last year, but considering how many clubs are willing to take on teams, there’s every potential to raise even more this year. If you’re thinking about getting a group together or want to help contact people who can, just drop an email to golf@muscular-dystrophy.com or contact Hayley Gill on 020 7803 4830.

Ian says, “When I tell my wife I’m sorry I can’t help out like I used to, the only thing she objects to is me saying ‘used to’ – because

apparently I’ve always been totally useless!” Maybe Ian has never been helpful at home, but like him, you’ll be amazed what a few phone calls and letters to friends can do. Get involved today!

EVENT DETAILS The Muscular Dystrophy Campaign Four Course Classic invites golfers to play 72 holes in one day – or to tackle a half-marathon of 36 holes – and raise sponsorship to support the vital work of the Muscular Dystrophy Campaign.

When: Where: Who: Why:

To get involved in this year’s event, visit www.fourcourseclassic.com, drop an email to golf@muscular-dystrophy.org or call Hayley Gill on 020 7803 4830.

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24 June 2011 Four courses near you, with more than 500 to choose from You and as many friends as you can gather To raise funds for research and care for people living with muscle disease.

www.muscular-dystrophy.org

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The Q Trust quest

to raise a million for muscle disease

Charles Reynolds, son of Q Trust’s late founder, drove away with top raffle prize.

C

ontributors to The Q Trust set up in memory of celebrated journalist and traveller Quentin Crewe have soared past their goal of raising a million pounds for muscle disease during a glittering ball at London’s Saatchi Gallery. The Trust was established only nine years ago and set the ambitious target after it raised its first £500,000 in a remarkably short time.

The Q Trust’s founder, advertising man Mark Reynolds, sadly died with muscular dystrophy

FEEL LIKE A GODDESS

Fashions that move with the body are helping raise funds.

One divine evening last autumn, Maria kept her Sloane Street store open late for a reception and private view of her latest collection, all in support of the Muscular Dystrophy Campaign. Donating ten percent of all sales on the night to research

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in 2005, but his son Charles scooped the top raffle prize, a Fiat 500.

Through ticket sales and a silent and live auction the event raised a spectacular £225,000 – pushing the Q Trust well beyond the £100,000 needed to pass the £1 million mark.

The money raised on the evening will fund the work of researchers who are getting closer to finding a vital treatment or cure for people with muscle disease.

and care for people with muscle disease, Maria gave her guests the opportunity to be styled by her and her team, and hosted a raffle giving ticket buyers a chance to win a pair of her celebrated Magic Pants. Store Manager Stephanie Page said, “It is great to be able to support the Muscular Dystrophy Campaign through this event. This is a cause that is really close to my heart as my brother has Duchenne muscular dystrophy.” Maria also generously donated a week’s internship and a private viewing as auction prizes, raising a fantastic £41,000.

Maria doesn’t fit her clothes on models, but on real women to ensure her fashions work with many different body shapes.

Knowing what a woman wants, she chooses her fabrics carefully to feel beautiful against the skin, and to move with the body while sculpting the female form.

The Q Ball

30th September 2010 Please save the date!

EARNING TRUST THROUGH RESEARCH TRUSTS AND SUPPORTERS with a particular interest in research heard top scientists describe the latest advances in their work at the Muscular Dystrophy Campaign’s recent research reception at the Royal Society of Medicine. Hosted by Lord Walton, the reception gave three researchers the opportunity to meet the people who help to fund their work.

Professor Kate Bushby, Dr Peter Zammit and Dr Aurelie Goyenvalle delivered impressive reviews of their work to an audience of both scientists and non-scientists alike.

Professor Kate Bushby describes how the body copes with the damage caused by muscle disease.

For support call 0800 652 6352

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Volunteer receives recognition Muscular Dystrophy Campaign volunteer Roy South received a ‘Dedicated Volunteer’ award from the Peterborough Council for Volunteer Services (PVCS) at its 30th anniversary Annual General Meeting.

Roy, a member of the Peterborough Branch of the charity, has been instrumental in highlighting the impact of muscle disease for families in his region, and as Welfare Officer for the branch, continues to campaign and support others living with or affected by the condition. Roy, who has limb girdle muscular dystrophy said: “I was surprised and very appreciative to be nominated by the PVCS and it was nice to be recognised for the work we do on behalf of the Muscular Dystrophy Campaign in the local community for people affected by muscle disease.”

Congratulations and thank you Roy for your commitment and contribution.

Muscular Dystrophy Campaign’s National Conference Saturday 15 October 2011 New Venue – East Midlands Conference Centre New Location – Nottingham  Learn of the latest research developments  Hear from experts in the field of muscle disease  Meet care advisors and gain the latest information on specialist services available  Meet other people living with muscle disease in a friendly and relaxed environment  Share your views on the charity’s work and priorities To find out more visit: www.muscular-dystrophy.org/nationalconference2011 or call Maureen Winslade on 020 7803 4804 This year’s Conference will be brought to you thanks to:

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

Roy South receiving his award from Peterborough Council.

National_conference_target_ad.indd 1

Dare to be different at the Superhero Run.

4/2/11 10:41:10

LONDON AND THE EAST OF ENGLAND Contact Laura Watts

Volunteer Fundraising Manager 020 7803 4821 • l.watts@muscular-dystrophy.org UPCOMING EVENTS 15 MAY London Superhero Run You know you want to! Dress like your favourite superhero and join this fantastic 5k fun run in Regents Park. Get in touch to register and for fundraising support.

30 MAY London Bupa 10,000 Far less strenuous than the marathon but just as fun, this 10k run takes participants past amazing views across the Thames and past some of the capital’s most iconic architecture. Contact us today to get involved.

THANK YOU! Charlotte Pask who organised a fantastic fundraising fashion show in Peterborough raising £941. Charlotte was inspired to organise the event by her cousin who has muscular dystrophy. The show was a huge success with over 200 people attending and included guest models from the Peterborough Branch of the Muscular Dystrophy Campaign!

SSE Contracting staff members collectively donated a fantastic £500.

Volunteers who wore their Santa hats for a festive collection at Cannon Street Station in December, raising £437. Jolly good!

Rochford and District branch volunteer fundraisers delivered an impressive donation of £1,750.

GOOD LUCK! Rosie Bennett is organising a film themed party at Shepperton Film Studios in February.

Let’s hope for a hit at the box office!

Richard Park is trekking Kilimanjaro in February and has raised a fantastic £4,386 and rising!

Tom Wright will be walking the Great Wall of China in April and has raised £3,538 so far.

An impressive feat.

Anna Craig- McQuaide is getting ready for a challenging skydive in February to raise funds for the Muscular Dystrophy Campaign.

Peter Jones will be cycling from London

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to Paris in June to raise funds for the new Neuromuscular Centre in the West Midlands. Best of luck!

VOLUNTEERS Join a new fundraising committee in Milton Keynes. Please contact us to find out more.

Become a Volunteer Team Member and receive our monthly volunteering update. We’ll send you information about the different activities you can do help us – including everything from putting up a poster or collection box in your local shop to cheering and serving runners at the London Marathon. Get in touch if you would like to find out more.

www.muscular-dystrophy.org

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Fundraising Louise climbs the dizzying heights of Kilimanjaro.

SCOTLAND

Contact Lorna Johnston

Volunteer Fundraising Manager 07801 047 974/0141 334 0264 • l.johnston@muscular-dystrophy.org UPCOMING EVENTS 19 MARCH Concert, Paisley Abbey Join us for a special Easter concert featuring the Sirens of Titan, Jane McCarry and Mark Cox and other local artists. Tickets are £10, children £5 or platinum including front row seating and a drinks reception, £20.

14 APRIL A Question of Support, Hilton Glasgow Grosvenor Tickets are sure to go fast for our second event featuring special guests Derek Parlane, Jackie McNamara and more. Tickets including three-course meal are £30 or £270 for tables of 10.

8 MAY Women’s 10k, Glasgow Join our team for the UK’s largest all-women 10k in the beautiful surroundings of Glasgow’s Bellahouston Park.

22 MAY Edinburgh Marathon We still have some charity places available for the marathon and the team relay. Join our team today for this spectacular race.

THANK YOU! Glasgow Freight Club Scottish Volunteer of the Year, Eilean Stewart, spoke at the annual dinner dance and was amazed to bring back £23,900 in donations for Muscular Dystrophy Campaign.

Carter’s Crew from Strathspey, Kate Young, Grace Sermanni, Lorraine Carter and Ailsa Armstrong completed the local Aviemore Half Marathon and Catriona Young ran the Aviemore 10k – all inspired by Lorraine’s son, Tiernan, who has muscle disease.

Louise Fendick scaled Mount Kilimanjaro to raise vital funds. Louise is pictured above at the summit after completing this mammoth challenge.

Glasgow Christmas Collection team volunteers braved extreme cold to collect donations in Central Station. With many trains cancelled due to snow, they still managed to raise a fantastic £1,087!

Annette Brown, Margaret Murray, Steven Sandilands and Jeff Black put on a fantastic Spirit of Christmas event in Kilmarnock. It was a great start to the festive season and raised over £1,300!

David Watson held his annual Christmas film event raising more money for the charity.

Thank you!

Spifox held their Christmas carol concert and lunch, inviting 904 property and construction professionals to raise a whopping £20,000 for the Muscular Dystrophy Campaign!

The Masonic Lodges of Scotland who donated more than £1,000.

VOLUNTEERS Committees update in Glasgow, Paisley, Edinburgh and Tayside would be delighted for you to get involved. Or set up a new committee in your area, especially Aberdeen, Inverness and Dumfries!

NORTHERN IRELAND & ISLE OF MAN Contact Glenn Oakes

Volunteer Fundraising Manager 028 9075 1497 • glenno@muscular-dystrophy.org UPCOMING EVENTS Do something exciting in 2011 – put on a parachute, dust off the trainers and grease up your wheels!

SKYDIVING CHALLENGE Get in touch with Glenn Oakes (details above) to plan a tandem or solo sponsored skydive in Garvagh – on your own, or with your group of friends and family.

RUNS Larne Half Marathon – 19 March; Omagh Half Marathon – 10 April; Mid Ulster Mini Marathon – 25 April; Belfast City Marathon – 2 May; Docklands Fun Run, Dublin – 18 May; Newry City Marathon – 29 May; Carrickfergus 10k – 5 June; Dublin Women’s Mini Marathon – 6 June; Lisburn Half Marathon – 15 June; Ards Half Marathon – 24 June. Most have 10K, Fun Run, and walking alternatives and are wheelchair accessible. Please call or email.

MOUNTAIN BIKE ENDURANCE TEST Longest Day, Longest Ride is a 24-hour mountain bike challenge held on the Isle of Man during the Summer Solstice weekend.

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Open to all. Visit www.llldlr11.com £1,000 PRIZE DRAW The Northern Ireland Draw to win £1,000 will launch in April. Past fundraisers should look out for your books of £1 tickets to sell – or get in touch to request yours.

COME DINE WITH ... THE UK’S STRONGEST MAN! Glenn Ross and children from Rascals Day Nursery (Pictured above right) want you to Come Dine with Us. Hold a dinner party and ask guests to donate.

THANK YOU! Shauna McDonald from Newtownbutler organised a sponsored Facial Hair Dare, challenging men to not shave for a month.

Sponsorship money is still arriving and is expected to exceed £2,500.

John McClean and friends launched the DVD, GRASSMEN It’s in the Blood, telling the story of Northern Ireland’s silage harvesters.

The event contributed a fantastic £2,000.

Ciaran Doherty and a friend who cycled from the furthest north to furthest south point in Ireland raising an outstanding £2,970.

Glenn Ross and friends support Come Dine With Us.

The Scratch nightclub that organised a series of events including a raffle for tickets to a Pink concert raising £1,963.

The Ricky Beattie Charity Shield raised £1,910 by organising a five-a-side football tournament. Congratulations and thanks!

VOLUNTEERS Fundraising Committees are forming in the Belfast and North Down areas. Please get involved or get in touch to start a committee in your area!

For a full range of opportunities visit: www.muscular-dystrophy.org/

For support call 0800 652 6352

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NORTH WEST, WEST MIDLANDS AND NORTH WALES Contact Charles Horton

Volunteer Fundraising Manager 01244 536 551 • charlesh@muscular-dystrophy.org UPCOMING EVENTS 15 MAY The 2011 Great Manchester Run, The UK’s premier 10k event. To reserve your place contact our coordinator Liz Rigg at elizabethmrigg@gmail.com or call the regional office. Registration is £40 and participants are asked to raise at least £200.

5 JUNE The Great Midlands Fun Run This 8.5 mile run brings thousands to the streets of Sutton Coldfield, many in fancy dress. Come join the fun to form our biggest team yet.

17 JULY Zipslide at Imperial War Museum North, Manchester Enjoy a 250m zipslide across the Manchester Ship Canal from the Imperial War Museum to the Lowry Centre. Registration is £20 and we ask you to raise at least £125. Space is limited.

Contact Nicola Geraghty on 07828 139652 or at N.Geraghty@muscular-dystrophy.org 31 JULY Dragon Boat Race Festival, Salford Water Sports Centre, 9:30am – 5:30pm Organised by the Manchester Oriental Organisations Alliance, this event can take 36 teams of up to 16 rowers and

a drummer. No minimum crew required. To learn more or register contact charlesh@muscular-dystrophy.org

THANK YOU! Olive and Herbert Hughes (pictured above right) have not only been involved since the branch started 35 years ago, they raised £511 at their 50th wedding anniversary celebration, asking friends to make donations in lieu of gifts. Thanks to you both! For full story see page five.

Lee Webster and friends, colleagues and customers raised £4,000 and more towards Lee’s three-year goal of raising £20,000. He started off with a sponsored 26-mile walk along the Wirral Way, joined by a dozen friends. He plans to run the London Marathon in April and hold a ball in June. Keep up the good work!!

Christine Ogden, was recently nominated as Bolton Woman of the year. She held her annual fundraising concert in November with the help of the Withington Girls School choir and raised a magnificent £2,000.

NORTH EAST Contact Sara Benson

Volunteer Fundraising Manager 07825 845 895 • s.benson@muscular-dystrophy.org UPCOMING EVENTS 10 APRIL Gibside five mile Fun Run It’s back and only £10 per adult and £5 per child to take part. Contact Sara Benson or visit www.gibsidefunrun.co.uk for updates and information on how to enter.

SUMMER Run for All Jane Tomlinson’s 10k runs are happening in Hull – 15 May; Leeds – 19 June; and York – 31 July. To register, visit the Run for All website www.runforall.com, then get in touch so we can supply you with sponsor forms, a T-shirt and support to help you make the most of it.

ONGOING The £2k Challenge Do you have what it takes to raise £2,000? If you would like to set yourself a challenge for the new year why not sign up today and see if you can make a real difference in the lives of

Tim Barker and friends decided to spend the last weekend of October taking on the Three Peaks Challenge. The group climbed Ben Nevis, Scafell Pike and Snowdon in under 24 hours and have so far raised almost £1,000.

VOLUNTEERS Collecting Boxes depend on volunteers placing them in local businesses. If you have a little spare time, this is a vital way of raising funds.

New Fundraising Groups are looking for exciting local fundraisers and new organisers. We’ll offer ideas, support and help you recruit fellow fundraisers!

Organisers of the Glibsi de Fun Run Keith and Am y with son Alby.

those affected by muscle disease. If you would like to find out more or chat through some ideas please call Sara Benson.

THANK YOU! Everyone in the North East, Yorkshire and Cumbria for all your support in 2010.

There are too many to mention but you are all very special and make a real difference. We look forward to building on your support in 2011, so we’d love to meet up with supporters new and old to chat about new ideas and fundraising initiatives. Just get in touch!

Members of the Tynedale Branch for your continued support and recent donation of £8,000 for their fundraising in 2010. What a wonderful donation received just before Christmas – a lovely gift! Thank you for your kindness and support.

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Congratulations and tha nks to Olive and Herbert Hughe s.

VOLUNTEERS Fundraising Groups We are looking for people from the region who would like to form or be a part of a fundraising group.

We have people interested in forming a new committee in Bradford and Derby so if you live in the area and would like to find out more information please get in touch with Sara. We also have a Sheffield committee that is looking for some new members. It’s amazing what a difference your involvement can make.

www.muscular-dystrophy.org

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FOR A FREE NO-OBLIGATION DEMONSTRATION IN YOUR OWN HOME OR TO REQUEST A BROCHURE PLEASE CALL CAL 01908-698895 OR EMAIL: info@medicotech.co.uk

REAL 9000 THERAPY CHAIR

The REAL 9000 is a modular chair that can be adapted to any physical need to provide independence, safety and comfort.

The REAL 9000‌..

Assists the user to return to a standing position following exercise by using the tilt function.

Provides a safe and comfortable seating position before, during and after exercise

Allows the user to alter their seating position and height to accommodate any situation in the home whether dining, relaxing, exercising, reaching high objects and much more..

Move easily to a safe and stable position when using the Thera Trainers

www.medicotech.co.uk Medicotech Ltd, Unit 213 Milton Keynes Business Centre Foxhunter Drive, Milton Keynes MK14 6GD

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For support call 0800 652 6352

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Fundraising

SOUTH WEST AND SOUTH WALES Contact Anna Roberts

Volunteer Fundraising Manager 01242 221 251 • a.roberts@muscular-dystrophy.org UPCOMING EVENTS Get fit and fundraise by signing up to a running event in 2011. Use your muscles to make a difference in aid of the Muscular Dystrophy Campaign. Exeter half marathon or 5k fun run – 1 May; Bristol 10k – 15 May; Torbay half marathon – 19 June; Bristol half marathon – 11 September; Swansea 10k – 25 September; Cardiff half marathon – 16 October. To find out how to register and reserve your place email a.roberts@muscular-dystrophy.org

THANK YOU South West Wales branch who held a car wash at their local fire station. It was

very popular with people queuing to get their vehicles sparkling, and raised a fantastic £887.60.

Penarth branch held their annual cheese and wine tasting evening at their local Washington Art Gallery and raised £400 over the evening.

The Royal Forest of Dean branch held their annual Spirit of Christmas carol concert and with a record turnout raised over £5,000.

Les James and friends organised a charity bike ride from Brecon to the Mumbles and raised £1,262.

Bath and Bristol fundraising team gained the support of local brewery Bath Ales and have managed to place Muscular Dystrophy

Local firemen lent a hand in the South West Wales branch car wash.

Les James and friends on their bike challenge.

Campaign collection cans in all of their pubs. The team has an extensive list of events planned for 2011 in the Bath and Bristol area, and they’d love to have you join them. To find out more email bristol@muscular-dystrophy.org

Leyton James raised over £500 running the Cardiff Half Marathon .

SOUTH EAST Contact Carol Tunstall

Volunteer Fundraising Manager 01923 283141 • c.tunstall@muscular-dystrophy.org UPCOMING EVENTS 21-22 MAY Dragon Boat Race, Portsmouth and Southsea Come join a team for this spectacularly festive and competitive event – or recruit your own team of up to 16 rowers and one drummer.

It’s an amazing day out and a great way to raise funds, so just call Carol to get involved and start rowing your way to victory!

THANK YOU Our 18 participants in the Great South Run last October in Portsmouth raised over £7,000. We have guaranteed places for

this year’s Great South Run on 30 October so contact Carol to start pounding the pavement.

Pupils from Woodcote High School, Coulsdon, organised an awareness day to learn and teach their fellow students more about Muscular Dystrophy and its causes.

The day included making DNA strands out of sweets and playing basketball sitting down to simulate the effects of some neuromuscular conditions.

Roger Cook organised a Golf Weekend which was attended by Ed “Stewpot” Stewart. In addition to presenting an electric wheelchair to 10 year-old Matthew Gilbert,

MDC TargetMD Winter 2010 2nd AW.indd 31

Learni Les ngJam more es abo andut frie mu nds scle disease at Woodc on ote their Hig bik heSch cha ool llen . ge

Les James and friends on their bike challenge

Roger also made a donation of £500 to the Muscular Dystrophy Campaign. Don’t miss this year’s golf weekend which will be on 11and 12 September at Foxhills Golf Club!

www.muscular-dystrophy.org

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Ask The Experts

A

Ask The Experts Support Services at the Muscular Dystrophy Campaign, answers your questions Physio for boys

Q

I am a physiotherapist who has recently started working with two boys with Duchenne muscular dystrophy.

I have never worked with anyone with muscular dystrophy before and I would like any information you could give me. I think it would be useful to me if I could speak to other physiotherapists who have experience in this area to gain some tips and advice as I think it would improve the care I am giving these boys and their families.

The Muscular Dystrophy Campaign produces a wide range of publications available for free including factsheets on the different types of conditions which are available to download from our online bookstore www.muscular-dystrophy.org/ how_we_help_you/publications or order from our information team.

Our three professionals’ networks for physiotherapists, occupational therapists and school staff allow those working with people who have muscle disease to access our information and services and to share advice and knowledge to achieve best practice.

Members joining the physiotherapy network receive an information pack including the guide Physiotherapy Management for Duchenne muscular dystrophy and updates from the charity. The Muscular Dystrophy Campaign also runs information days for physiotherapists and occupational therapists, the next one is being held on 4-5 April and will include information about how the Muscular Dystrophy Campaign can support you, information and advice from guest speakers and workshops.

To order copies of our publications or for more information on joining a network please contact our information team 0800 652 6352 or info@muscular-dystrophy.org

Wheelchair going spare

Q

My daughter has just received a new electric wheelchair and we are at a loss as to what to do with her old manual one. We placed an advertisement in the local paper but have had no response. It seems a shame to let such an expensive piece of equipment go unused and I would like to donate it to someone who was in need of it. Any ideas?

Donating second hand equipment can sometimes be difficult as most equipment needs to be carefully assessed

for the individual person and appropriately modified to meet an individual’s needs; this is especially the case with wheelchairs.

Sometimes firms are willing to buy back second-hand equipment, which can be reconditioned and sold on, contact your original supplier to see if this is an option. One website provides a list of charities who give donated wheelchairs to people in developing countries http://www.mobility-advisor.com/ wheelchair-donations.html To reach a wider audience you can place advertisements on online forums such as TalkMD, the Muscular Dystrophy Campaign’s online community. The Disabled Living Foundation, a charity that advises on equipment issues also has an online forum where you can advertise second-hand equipment you wish to sell or donate.

They also produce a factsheet on selling second-hand equipment. To find out more visit www.dlf.org.uk

Contact us If you have a question, write to, Muscular Dystrophy Campaign, 61 Southwark Street, London SE1 0HL.

A

Free support and money-saving tips Carers – take a break Everybody needs some time to themselves.

Getting time for yourself can be good for both you and the person you care for.

Your local council may work with voluntary organisations or charities and involve specialist short break providers to offer you a break. Usually, either the carer or the person being cared for goes on a short break; however, there are breaks where you and the person you care for can stay together if you want to. You may be able to receive vouchers from your local council for short-term breaks giving you the freedom to choose where and

32 TargetMD

when to have a break. These schemes aren’t available everywhere so check with your local social services.

For more information visit www.direct.gov.uk/ en/caringforsomeone/healthandtakingabreak

Comparison site uSwitch performs the widest ranging search, though Energyhelpline and MoneySupermarket. Visit www.uswitch.com/heating-cover

Heating insurance

UK Online Centres has launched Online Basics’, five, free short courses to do at home or at a local UK online centre. These are great if you want to know more about using a computer or introduce the internet to friends or family. To find your local computer centre visit: www.onlinebasics.co.uk or call free on 0800 77 1234.

If you are looking to buy heating insurance you may actually already have your boiler covered by your home insurance policy; it’s worth checking before signing up to anything. Also, you don’t have to buy your policy from your supplier. You can use a free comparison service to check the cheapest provider.

Free computer courses

For support call 0800 652 6352

MDC TargetMD Winter 2010 2nd AW.indd 32

16/02/2011 15:57

Diary dates

Book your place today!

Details of our information days, conferences and family weekends for both professionals and families affected by muscle disease. Plus, ways of getting all the information you need

Here to help

Diary dates

New publications packed with information to help people with neuromuscular conditions

April

Braver than all the rest A mother fights for her son ISBN: 9781903659519 Published by London League Publications 2010 (1st edition) £9.00 Based in Castleton in Yorkshire, Karl’s determination to get the most out of life despite his disability inspires those around him, in particular Chris Anderson one of the Castleton rugby league players who is coming to the end of his career in the game. Philip Howard’s first novel attempts to inform the general public about the lives of those living with muscular dystrophy and shows how it affects them, their families and carers.

This book can be ordered from LLP, PO Box 10441, London, E14 8WR or online www.llpshop.co.uk

Contact 01202 432 048 or info@cmtuk.org.uk

17 April

Contact 01202 432 048 on 020 7803 4820.

14 May

Contact 0800 374 803 or admin@gbs.org.ukt

15 May

Contact Alun Mainwaring on 0207 8034820.

Guillain-Barre Support Group Leeds Oxford Town and Gown Oxford

We have produced a factsheet which details organisations that offer travel insurance to people with pre-existing medical conditions. It also has information and advice on life insurance, critical illness and disability insurance as well as wheelchair, mobility scooter and car insurance.

A wide range of publications are available from the Muscular Dystrophy Campaign. Contact 0800 652 6352, info@muscular-dystrophy.org for more information or download from our free publications store at www.muscular-dystrophy.org

June 18 June

Contact 023 8044 9708 or mdsg@tesco.net

24 June

Contact Hayley Gill on 020 7803 4830

Myotonic dystrophy support group conference Four Course Classic

July 10 July

Contact Alun Mainwaring on 020 7803 4820.

10 July

Contact 023 8044 9708 or msg@myositis.org.uk

ASICS British 10K London

Diary dates February

Myositis support group conference Birmingham

Contact Jen Taylor 020 7803 2853

North East muscle group meeting Gateshead

August 18-20 August

Contact Jonathan Kigsley 020 7803 4839

Nemaling myopathy convention London

North Wales Neuromuscular Conference Wrexham

Contact 01968 674 998 on davidmcd@hotmail.com

October

March 4 March

Contact Jen Taylor 020 7803 2853

7 March

Contact Jen Taylor 020 7803 2853

1 October

Muscular Dystrophy Campaign Scottish Conference and AGM

North West muscle group meeting

15 October

London muscle group meeting

Muscular Dystrophy Campaign National Conference and AGM

Ramada Jarvis Hotel, Watford, WD25 8JH Contact Martin Chainani 020 7405 9200 ext. 0529

MDC TargetMD Winter 2010 2nd AW.indd 33

15-17 April

May

Insurance factsheet

12 March

Contact Alun Mainwaring on 020 7803 4820.

Virgin London Marathon

disabled parents when caring for their baby.

Congenital muscular dystrophy Patient Information day

10 April

CMT Convention Coventry

This new factsheet from the Muscular Dystrophy Campaign highlights various equipment, home adaptations and gadgets that can aid a

25 February

Contact 020 7728 3927 or naidex@emap.com

Great Welsh Marathon

Support for disabled parents factsheet

25 February

5-7 April

Naidex 2011 NEC Birmingham

Beardmore Hotel and Conference Centre, Beardmore Street, Clydebank, Glasgow G81 4SA Contact Maureen Winslade 020 7803 4804 East Midlands Conference Centre, University Park, Nottingham, NG7 2RJ Contact Maureen Winslade 020 7803 4804

www.muscular-dystrophy.org

TargetMD 33

16/02/2011 15:57

Inspiration

mpleted The team co cle cy y da a threes. ride to Pari

Friends chose a kayak challenge to la unch the campaign.

Win one for Bertie Friends of Bertie Brookman from Torquay are clubbing together to tackle an extraordinary 23 fundraising events – that’s one for every year in the life of their friend, who sadly died with limb girdle muscular dystrophy last April.

“B

ertie was such a nice guy and had such a big group of friends,” says Joe Venton, one of seven guys committed to join in every event. “We thought we would do a marathon, but that level of involvement just didn’t seem enough for us.”

The team are well on their way to completing their seventh event, and have already raised over £10,000 towards their ambitious £15,000 goal. The core seven fundraisers have already completed a kayaking challenge to launch the drive and recruited a friend to join them in a London to Paris three-day cycle challenge. “That was

34 TargetMD

really hard – it was some 200 miles. And we planned it before we had a lot of time to get fit.” But they have the photos to prove they completed the challenge with a team of eight and a support crew of five.

Other events in the works include a jailbreak, where the team will set off from Dartmoor Prison with no money and see who can get the farthest in 36 hours. “Bertie was also very enthusiastic about his cars,” says Joe, so the team are participating in a Track Day, and hope to end the marathon of fundraising events with a road rally from Plymouth to Dachau, Germany.

Their aim is to finish by next summer, celebrating Bertie’s birthday in June before wrapping up the campaign with their final events. They welcome others to join their events and even contribute their own fundraising efforts. “Bertie’s dad, Simon Brookman, has been very involved in supporting us – and one friend in Geneva heard about our efforts and gave us the money he raised through a hill climb.”

It’s a constant stream of events the friends have taken on, but they are committed to see it through. “We’re trying to incorporate social

For support call 0800 652 6352

MDC TargetMD Winter 2010 2nd AW.indd 34

Bertie Brookman, always well remembered by his friends and family.

media and already have 433 fans on Facebook.

It’s important to us because we think more people should know about the Muscular Dystrophy Campaign and the serious conditions they are trying to fight,” Said Joe.

Be inspired Do you know someone whose story has motivated you? If so please contact our Press & PR Manager.

Dominique Vincent

020 7803 4844

d.vincent@muscular-dystrophy.org

www.muscular-dystrophy.org 16/02/2011 15:57

TAR

n,

his ily.

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