Target 2013 (4 of 4) by Muscular Dystrophy UK

magazine

Target MD Issue 4 of 4 2013

Access to the

high street Campaigning news

Research updates

Fundraising events

Best of the web

Trailblazers

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welcome

As I write, we are starting to look forward towards Christmas and the New Year with their seasonal warmth and festivities at a time when the weather outdoors may not be so inviting. The end of the year is a time to take stock of progress and to look forward to the challenges and opportunities that 2014 may bring. There have been many positive developments in the last year or so with more than 200 clinical trials now underway involving patients with neuromuscular conditions. We expect this number will grow as the pace of development increases across the world. We remain at the forefront of neuromuscular research in this country and the massive investment we have made since we formed – thanks to the determination of our members and supporters – has helped build the infrastructure, train the scientists and support the most promising new research avenues. We continue the drive for treatments to emerge and supporters can be confident that the charity is continuing to make a huge difference. You may have heard about our launch of the Duchenne Forum in October, which saw five charities join with us to fund seven new research projects. We hope the Forum will become an increasingly important partnership in the future, investing more funds in high-quality research. We are also very keen to meet with other single condition groups and charities to explore partnership working. There is no doubt we will achieve our shared goals in research and improved care more quickly if we put our shoulders to the wheel together. There has been one major disappointment in recent months when the exon skipping trial testing drisapersen as a potential therapy for Duchenne muscular dystrophy was halted. GSK and Prosensa reported a lack of evidence to show a significant clinical benefit, but we are pleased they have also reaffirmed their commitment to finding a treatment for Duchenne muscular dystrophy. Researchers may learn as much if not more from a setback than from what appears to be a success and the data underlying the drisapersen trial setback will be analysed and studied to enhance our knowledge and understanding. We know the route to treatments is unlikely to be direct and we should perhaps prepare ourselves for further disappointments on this journey while we hold firmly to the ultimate goal of a treatment becoming available for everyone with a muscle-wasting condition. Although my welcome to this edition focuses on research, our work continues on all fronts. It was encouraging to see our efforts as an effective charity were recognised again this year with the Charity Times ‘PR Team of the Year’ award, and we remain focused on achieving our goals of ensuring treatments and high quality care are available to all.

Robert Meadowcroft Chief Executive

www.muscular-dystrophy.org

Contents Features

News

Regular

08 High street or high stress

22 Preliminary results of exon skipping clinical trial

06 Letters

11 Trains, planes and buses 12 Mystery shopping in the UK 15 Visiting the high street 20 All for Adam 32 New paediatric team in the North West

22 Access to Work scheme concerns 22 Call for clinical trial transparency 23 Improving access to rare disease drugs 23 Care provision secured in the SE 23 Weâ&#x20AC;&#x2122;re Bridging the Gap of info

On the cover Luke Baily, Trailblazer of the Year 2013, with our President, Sue Barker MBE. Luke writes about his high street experience on page 15. Cover photo: Chris Oâ&#x20AC;&#x2122;Donovan

23 New Duchenne Forum

13 News 22 Advocacy updates 30 Teaming up for powerchair football 24 Fundraising events 30 Best of the web

www.muscular-dystrophy.org 05

Hello,

About us The Muscular Dystrophy Campaign is the leading UK charity fighting muscle-wasting conditions. We are dedicated to beating muscular dystrophy and related neuromuscular conditions by finding treatments and cures and improving the lives of the 70,000 adults and children affected by them. We focus on funding world-class research, providing practical information, advice and support, campaigning to bring about change and raise awareness, awarding grants towards the cost of specialist equipment and providing specialist education and development for health professionals.

Join 6,500 others and follow us for regular updates on all areas of our work @TargetMD

Interact with us and around 11,000 fans on our Facebook page at: www.facebook.com/ musculardystrophycampaign

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

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

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

Disclaimer

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

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

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445 Printed on PEFC paper, produced at a mill that is certified with the ISO14001 environmental management standard. Enclosed into a bio-degradeable polybag

Welcome to our final edition of Target MD for 2013. The content reflects some of our activities for this time of year – shopping, Christmas carol concerts, meeting up with friends and reflecting on the year gone by. Our high street focus is particularly close to the heart of many of our Trailblazers; going shopping, going out for meals, using public transport and many other everyday activities often present barriers for disabled people, in the form of lack of access or, indeed, poor attitudes or discrimination. If you’ve had good or bad experiences on the high street, do let us know. It’s an important topic, and I’m keen to keep the conversation going. Target MD subscribers will have received a copy of our 2013 Christmas catalogue in your mailing, and there is also information on page 28 about the Christmas fare we have on offer. And on page 29, you’ll read about our popular Spirit of Christmas concerts all around the country. Do join us and usher in the festive season at a beautiful concert venue near you. I am also pleased to introduce you on page 18 to Amanda Hayes, who is affected by the rare condition, myasthenia gravis. Amanda tells of how our charity was there for her at a difficult time and helped her get the benefits she was entitled to. We also bring you more evidence of our campaigning, advocacy and fundraising successes across the country and the usual powerchair football round-up. Do let me know if you have any thoughts or comments about the magazine. We always want to bring you the news and stories you want to read. I’d love to hear from you. Thank you for all you do for our charity, campaigning, fundraising or volunteering for us in any way. On behalf of the Target MD team, I’d like to wish you and yours a Merry Christmas and every good blessing for 2014.

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

www.muscular-dystrophy.org

Letters We’d love to hear from you and to fill this page with your letters. Send us your good news, your frustrations, your story ideas, as well as any news you’d like to share with our readers. Hello I have only recently, upon my partner’s diagnosis, discovered the Muscular Dystrophy Campaign. The staff who I have been in touch with have provided amazing guidance at a time when we were not sure what steps we had to take in order to maintain his health. They have very kindly invited both of us to the upcoming events and sent e-mails with very helpful information which we did not receive from any other source. After my experience, I wish to get involved and give back to the MD community in order to help maintain the campaign and provide support so that we can maximise the resources and provide funds for the researching teams, the community support and all the members who may require the help. I would like to volunteer for the charity. Currently, I am working for Great Ormond Street Hospital as the Laboratory Medicine Coordinator which of course means that I am medically and scientifically inclined, understand the conditions and am very passionate to do whatever it takes in order for progression to be made.

Regards, Belma Draganovic If you, like Belma, would like to volunteer for the charity, do visit our website at www.muscular-dystrophy.org, call our volunteering hotline on 0845 872 9058 or email volunteer@muscular-dystrophy.org to find out what opportunities are available.

Hi Guys, Thank you for the updated eNewsletter, I sat reading it on the iPad. Being able to read it on the iPad allows the interactive side of the newsletter to come to life. Switching between web pages and websites is great; it gives continuity with the subject being read. Being able to read it on a tablet means it’s just like picking up a book without having to sit and read it in one place and being able to pass it across to others so the topic can be discussed. Please keep it coming.

Regards, Mike If you would like to subscribe to our new-look – and free – monthly eNewsletter, it couldn’t be easier. Three simple steps: visit our website at www.muscular-dystrophy.org, follow the link at the top of the home page to ‘Email updates’ and fill in the short form. It’s a great way to keep up-to-date with news and developments within our charity and the sector.

Looking ahead In the next edition of Target MD due out in January 2014, we will focus on the charity’s services in Scotland. Being a national charity, the Muscular Dystrophy Campaign works with families and teams right across the UK. So, in 2014, we’re going to focus in on the services we provide across the UK, starting in Scotland. If you have a story you’d like to share, please do get in touch with us. As always, we’ll also feature our latest research, campaigning and fundraising news, features and updates that keep you in the spotlight.

Hello there, I just wanted to say thanks for the [Muscle Group] meeting on Saturday; it was really good as always. We all said how useful we find these meetings, you always share some great information and are always so positive and enthusiastic which comes across really well. The time goes really fast at these sessions. The chance to also network like that is so important and everyone went for a coffee together afterwards for a couple of hours so it made a terrific afternoon. We are now really keen to come to the National Conference in Nottingham in October. We are going to see if we can get some shared transport to help with the costs but also it’ll be fun to go together, sing songs and sweetie bags!

Julie Julie regularly attends the Thames Valley Muscle Group meetings. If you’d like to join a Muscle Group or find out more about these invaluable forums for sharing information and meeting other people affected by muscular dystrophy and related neuromuscular conditions, then do get in touch with Jonathan on 020 7803 4839 or j.kingsley@muscular-dystrophy.org

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

www.muscular-dystrophy.org 07

Feature

High street or high stress? Everyday activities – shopping, going out for a meal, having your hair or nails done, getting out and about – should be just that: everyday activities. But for many disabled people in the UK, accessing the high street is often a struggle, despite disability discrimination legislation being in force since 1995. Here, some Trailblazers share their positive and negative experiences on the high street.

Getting there

Pubs, clubs and dining out

A judge at Leeds County Court has ruled that the ‘first come, first served’ policy regarding the wheelchair space on buses – meaning if the space was already occupied by a buggy user, the driver could not insist they move if a wheelchair user wished to board, and vice versa – contravenes the Equality Act, which requires that service providers treat disabled customers equally. While this ruling has been welcomed by Trailblazers, it is clear that attitudes still need to change. Some Trailblazers don’t want to compete with mums and buggies and would prefer that buses were required to have more spaces available.

Trailblazers have had good and bad experiences of access at local smaller venues or big chains. Here, some Trailblazers offer advice to young disabled people who may be worried about going out to pubs and clubs.

Here are some of their thoughts:

“

Fantastic news! However, attitudes are the thing that needs changing and stronger branding of the disabled bay, not just signs on windows saying it.

“

I love the Mercedes Citero buses as they have plenty of spaces for wheelchairs, prams and luggage and everyone can live in blissful harmony!

“

like bus “Itowould companies have a helper scheme where passengers sign up to help pram users with their babies and pushchairs. It used to be common sense!

“

The good clubs are the ones that allow wheelchair users to queue-jump, where there are reserved tables, accessible toilets, prompt bar staff and lovely bouncers who will part the crowds for you.

“

Pubs are a bit hit and miss – most I visit do have accessible toilets, but not exactly what I would call accessible.

“

There’s a club I go to where the head of security has come and introduced themselves and said to ask for them if I have any problems. If you don’t like moving around in crowds, I’d say get in early, find a table/ space and stay there.

“

I had three under-five-year-olds – I would have to carry my youngest, a bag and a buggy on to the bus (my two toddlers would get on by themselves), pay the fare, put the buggy on the luggage rack and try to find a seat before the bus moved off. I’m now a full-time wheelchair user and I’d love to be able to use the bus, but this problem of wheelchair versus buggies really puts me off.

“

cloudnumber9/istock

“

When choosing to dine out in London or Oxford with friends or family, I’m often limited to the more modern restaurants. It took my friends and I an hour once, when looking for a place to eat, before a show in London. Same with looking for good pubs to go to.

experience...

Beauty

Roddy1Red/istock

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Shops Trailblazers have a range of experiences of shopping on the high street. In addition to the two mystery shopping reports (page 12), here’s what some young disabled people have experienced while shopping.

“

Most shop layouts are not considered for people in wheelchairs or even parents with buggies. In the large sports goods outlet store and a few others, I find myself taking the stands with me or getting hooked up.

“

The layout in the sports store is poor for anyone in a wheelchair. We need to leave a trail of breadcrumbs to find a safe way out. I wonder what would happen if a fire broke out? I complained to the Manager and all he said was that he sympathised but had been told by head office to get all the stock out. What price health and safety for its customers.

“

I often find large clothing stores really crowded too. To get my wheelchair through can be a nightmare. When people drop clothes on the floor it makes for an even bigger obstacle course than it already is.

“

I have problems in little boutique shops: they have really cute stuff in them but are way too small for my wheelchair. Also in old towns, loads of shops have steps up to them.

Trailblazers have launched a brand new investigation into high street access. If you’d like to take part and have your say, visit www.mdctrailblazers.org and complete the survey.

“

Hannah-Lou Blackall, a Trailblazer and dedicated campaigner, shares her recent experience of trying to have her nails done in an east London shopping mall. I was in Westfield Stratford a couple of weeks ago and thought it might be nice to get my nails done. However when I approached the nail bar, I was told that they would not give me a simple manicure because I couldn’t fit at their desk with my wheelchair. They said it was a health and safety issue and they would not be able to do a professional job! Not impressed by this explanation, I explained to the duty manager that I had not had a problem at other such nail bars, and that my hands can be on my tray whilst they are being painted. My PA even gave them an example of how it could be done. He, however, continued to say they would not do it. He even suggested I go elsewhere where there would be a big enough chair for me. When I tried to explain that I can’t sit in another chair and I need to stay in the one that I am in, he said – again – it’s health and safety they can’t do a professional job and no, they would not do a manicure for me. My PA and I said that we would be reporting the nail bar for discrimination and telling a lot of people about it, as not only was it rude (he was constantly answering the phone and trying to get away from us) but the reason was completely unsatisfactory. It is not all bad news for beauty seekers though. On a recent trip to Tenerife, I came across the most lovely and accommodating hotel spa staff I have ever met. Nothing was a problem for them; I could stay in my chair, they would move around me, I was able to have gel nails done and several massages. They even went so far as to ask if there was anything they could do to make it more comfortable for me. Why is it, then, that when you are in a foreign country and you can only communicate with the very basic of language skills, you can get a five star service? I have found other places in the UK that are accessible and who will do nails and hair for me – although they won’t do a hair wash as their chairs are fixed so I can’t move mine in place. These places are in Hull and down in Devon. They are very accommodating and try and do what they can with the space and tools available to them. Whilst I have had a few good experiences, most of them have been abroad! The overwhelming majority of the UK experiences have been awful moments where I just want to run away and hide. It is embarrassing to be told in the middle of a busy shopping centre that I can’t have a manicure because my chair is dangerous! If you, like Hannah-Lou, would like to share your high street experience, do get in touch with us on trailblazers@muscular-dystrophy.org

www.muscular-dystrophy.org 11

Most people who live in the bigger cities across the UK rely on public transport to get around. Access to public transport for disabled people is still unacceptably poor and the Muscular Dystrophy Campaign is actively campaigning to change this.

VictorGrow/istock

Trains, planes and buses In late September, the Parliamentary Transport Select committee published a report outlining their findings from an ongoing investigation into access to the national transport network. The Inquiry heard from stakeholders who had an interest in the topic, including the Muscular Dystrophy Campaign’s Trailblazers. The report acknowledges that the Government needs to ‘work harder to improve accessibility for disabled people across the nation’s transport networks’ and addresses challenges to taxis, air, rail and bus travel. There is also wide recognition that there needs to be more investment and cross-government working on accessibility in order to secure the full benefits gained from increasing disabled people’s access to employment and training, healthcare and wider participation in all parts of society. Earlier this year, Trailblazers gave oral evidence to the Transport Select Committee sharing their concerns and highlighting positive ways to improve the situation. Trailblazers from across the UK got involved by sharing experiences and ideas, and evidence from our End of the Line report [into public transport] and our APPG Inquiry have had a direct impact on this report. Recommendations include a national public awareness campaign for bus users so they are aware of the wheelchair space, the phasing out of pre-booking rail assistance and calls for the European Commission to reform the rules governing compensation paid by airlines when mobility equipment is damaged in transit. Louise Ellman MP, Chair of the Transport Committee said that more than a fifth of the 11.5m people in the UK who live with a recognised disability experience some difficulty when using transport networks. “Changes made ahead of the 2012 Paralympic Games delivered access for disabled people to significantly more parts of the public transport network for the first time and highlighted the immense value of such improvements for all, yet a year later, there is a risk that some of the momentum from London 2012 is being lost because further key accessibility improvements planned by the Department for Transport are being watered-down or abandoned.” Tanvi Vyas, Trailblazers Project Manager, gave oral evidence at the Inquiry session. “It is great to see that the Transport Select Committee recommendations echo those of the Trailblazers. We were delighted to hear that the Committee also wants to phase out 24-hour pre-notification for train travel which will enable young people to travel freely and spontaneously like anyone else. There is finally recognition that good, reliable transport has a huge impact on an individual’s experience of society; something Trailblazers have highlighted for some time. We need to see transport operators take equality seriously, and make policy reality, so that disabled passengers who continue to be let down can now travel with confidence,” Tanvi said. If you’d like to find out more or join in the campaign, do get in touch with Trailblazers on 020 7803 4846 or trailblazers@muscular-dystrophy.org

Changes made ahead of the 2012 “Paralympic Games delivered access for disabled people to significantly more parts of the public transport network for the first time and highlighted the immense value of such improvements for all...

“

Louise Ellman MP

Feature

Mystery shopping in the UK …

Sophie Dignum interned at the charity for a few months in the summer. She contacted Trailblazers Keisha and Catherine to do a mystery shop for Target MD. Here’s what they found. hot topic of discussion in the press recently has been the ‘legacy’ of the Paralympic Games 2012 across the UK. Did the Paralympic Games, many have asked, change the way authorities and the public approach issues such as wheelchair access in public places? We asked some of our younger supporters to ‘mystery shop’ their local high street and report back on their experience to see if we could find evidence of such a ‘legacy’. Keisha (37) visited her local shopping centre and high street in Birmingham. Although the high street is much older, the Bullring shopping mall was completed in 2003. Keisha, who has dermatomyositis, reported to Target MD that on the whole, her experience of shopping in Birmingham was very positive, both in and out of the newer Bullring complex. “Birmingham city centre is an excellent place for shopping in a wheelchair as most of the shops are wheelchair accessible, there are a lot of conveniently placed dropped kerbs and a lot of areas are pedestrianised. “I went shopping on a mid-week day with the purpose of getting some birthday cards, a birthday present for my brother and some toiletries for me. I was alone for most of my shopping trip, until meeting up with a friend briefly before going home. “My first port of call was a discount card shop on Birmingham High Street. I was impressed by the layout here. There was enough room for my wheelchair to get around comfortably which isn’t always the case in discount stores like this one. Unfortunately, I had to rely on the kindness of fellow shoppers to reach the merchandise that I wanted to buy or look at as there were no assistants on the floor. When it came to pay, the teller was friendly enough and attentive, though the counter was way too high. It meant that the teller had to lean quite far down to serve me and I didn’t feel comfortable craning my neck to look up at them. “After I’d bought my cards, it was time to get some aftershave for my brother and some toiletries for me so a major pharmacy and store, also on the High Street, was my next stop. Although this is not always the case in this store, there were lots of assistants around on the day I went. This meant I could quickly find what I wanted and had help to reach it. The assistants I talked to, primarily those in the fragrance section and the lady in the make-up section were very friendly and helpful without being over-powering or condescending. They gave me the help/ information I needed without apparent fuss or bother either on my part or theirs. I eventually bought toiletries for myself and came away with information on a fragrance for my brother. “Because I wasn’t sure on what I wanted to get, or where, I also stopped at a perfume shop in the Bullring. I didn’t buy anything there, but I got information on the price of the same fragrance for my brother. The assistants were friendly enough. The counters were a little high, but the shop itself, though small was roomy

enough/well laid-out and easily navigable in the wheelchair. “Lastly, I returned to a major chain store in the Bullring. This is a much smaller shop than the High Street branch, but also is very navigable for wheelchairs. The assistants here were friendly enough once approached, but not as friendly or helpful as in the High Street branch. In fact, with the make-up assistant I felt as though I were taking up her time a little too much by asking her to reach the item of make-up I wanted. Thankfully at this point I had my friend along with me, so she was able to take over and help, but if I had been on my own, as I was earlier, I would have completed my business and left the shop much sooner. “ Catherine (22), who has congenital muscular dystrophy, mystery shopped a new shopping complex in the North West of England: Liverpool One. Opened in 2008, Liverpool One can seem like a maze of walkways and varying levels. Wheelchair access has to a certain extent been considered, however, but is lacking in some key areas. As a new visitor to the shopping centre, Catherine

MACIEJ NOSKOWSKI/istock

www.muscular-dystrophy.org 13

limpido/istock

On the whole both Catherine and Keisha found that the majority of shops on the high street provided enough room between rails to allow a wheelchair to navigate around.

felt the system of lifts was confusing as only certain lifts provide access to certain floors. Additionally, ‘although the pathways are generally quite smooth’, Catherine reported, ‘the walkways on the first and second floors are too narrow for a wheelchair user’. The issue of parking can leave wheelchair users feeling that they are unfairly having to pay extortionate rates to park close to shopping centres. “Parking was the first obstacle to overcome. Do I park for free further away and battle with bumpy pavements to get to the shopping centre or do I pay extra to park closer?” This is a question many wheelchair users must ask themselves when attempting to shop on the British high street. On the whole both Catherine and Keisha found that the majority of shops on the high street provided enough room between rails to allow a wheelchair to navigate around. However, there was one major high street shop in particular that Catherine and other young supporters on our Facebook

group raised concerns about concerning access: a large discount sporting goods outlet. Stock piled up high and narrow pathways left Catherine feeling so claustrophobic in the sports outlet that she left before she was able to make her purchase. It seems a shame that the success of the Paralympic Games 2012 has not made this major sports retailer consider the needs of its customers who both live with disabilities and love to play sports. On the whole, then, our mystery shop challenge yielded some positive results. However, large gaps still exist in the provision notable high street stores make for their disabled customers. Although it is encouraging to see that modern shopping centres are correctly installing wheelchair accessible spaces, our Trailblazers must continue to campaign to bring issues of accessibility to the attention of the British public, despite the roaring success of the Paralympic Games in 2012. If you’d like to have your say on high street access, complete our new online survey at www.mdctrailblazers.org

www.muscular-dystrophy.org

Magical evenings of

Christmas carols and festive readings Welcome in the Christmas season with us in Gloucester, Eastbourne, Clapham, Writtle, Hyndland, Lanarkshire or Oxford. Our Spirit of Christmas carol concerts are all set in beautiful venues where youâ&#x20AC;&#x2122;ll enjoy an evening of carol singing and heart-warming performances. Help us to spread Christmas cheer and hope to the families and individuals across the UK affected by muscle-wasting conditions.

Tickets are available online at www.muscular-dystrophy.org/spiritofchristmas For more information please contact us on 0845 872 9058 or email volunteerfundraising@muscular-dystrophy.org

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Visiting the high street gurdonmaz/istock

Luke Baily, 23, is a President’s Award-winning Trailblazer from London, who has Duchenne muscular dystrophy. He shares with us his experiences of access on the high street.

isiting the high street is something everyone does, whether it’s for shopping or eating and drinking. It should be a simple and stress-free activity but for disabled people it can, at times, have its challenges. Like most people, I visit my local high street on a regular basis, but as a wheelchair user I occasionally find that steps or poorly-designed interiors either stop me going into a particular shop or eating in a particular café. These are problems that all wheelchair users experience in every part of the country and have in common. When I first became involved with Trailblazers in the summer of 2010 I did a small investigation into my local area, Richmond. Looking at every business in my high street it is quickly noticeable how varied access is. Some shops, cafés and restaurants have fantastic wheelchair access with no steps and have easy-tonavigate interiors with lifts and even disabled toilets. Others have flat access but badly designed interiors which are hard for wheelchairs to get around in. A number of shops and restaurants have interior steps and no access to their upstairs. A large number of premises, particularly restaurants, have steps at their entrances with no means for a wheelchair to get in without being physically lifted. This may just be an example of one high street but it is common to high streets up and down the country. In many cases there are easy and cheap adaptations that can be made to make high street businesses accessible. The Equality Act 2010 states that businesses must make reasonable adjustments to ensure that they are not a barrier to disabled people. Some shops, cafés and restaurants in response to this have made adjustments like providing portable ramps. However it seems that some high street businesses still manage to get away with providing no means of access. There are examples of brand new buildings in which there are shops, cafés and restaurants with inadequate wheelchair access. As an illustration of this, earlier this year I took a look at some of the eating places situated in a new development right next to

the Muscular Dystrophy Campaign’s [former] offices in Southwark Street. The newly opened sushi bar had two steps at both its entrances. They provide a ramp on request but this is not suitable for most electric wheelchairs. They also do not provide a call button so that you can ask for assistance. Just around the corner from here, there is a brand new salad bar, which has a poorly designed interior. Almost all of its tables are located upstairs, with only elevated tables and bar stools next to its entrance, far too high for wheelchair users. These places do not have the excuse of being in old, or listed, buildings. Their only reason for having access issues is a lack of disability awareness. High street businesses that provide a barrier to disabled people are losing out on a supply of customers and therefore income. A lack of accessible restaurants, bars and clubs has a negative impact on the social lives of disabled people. On occasion, I have been unable to attend a social event because of a lack of access. This is something that has been highlighted by Trailblazers as an issue that affects a disabled person’s ability to have a sense of freedom and empowerment. Access to the high street has a direct impact on the everyday lives of disabled people. Trailblazers is in the process of planning a campaign to highlight access problems on the high street and consider what could be done to make improvements. I very much approve of this idea as I am sure most Trailblazers campaigners up and down the country do. I think a campaign on this issue is important on something that directly affects all disabled people on a day-to-day basis. Being a Trailblazer, like Luke, gives you the chance to get involved in all sorts of exciting activities in order to raise awareness of muscular dystrophy and related neuromuscular conditions, and create change. If you’d like to be an undercover reporter, join in a parliamentary campaign, gain some valuable work experience or meet some like-minded people and take part in new and fun activities, do get in touch with Trailblazers on 020 7803 4846 or email trailblazers@muscular-dystrophy.org

www.muscular-dystrophy.org

Glory glory

Able2Wear gets a royal stamp of approval The owner of a clothing company that provides garments specifically for disabled people has been awarded an OBE this year for services to business and disabled people.

atricia Watson (pictured below) was once the owner of a Goretex waterproofs clothing company. However, when a customer made a passing comment about the difficulty his wife – a wheelchair user – faced in finding comfortable clothes, Patricia and business partner Harry Gillespie were inspired to embark on a complete change of direction. This was how Able2 Wear was born. Over 20 years later, Able2 Wear is the UK’s leading supplier of specialised clothes for disabled people. In June 2013, Patricia’s hard work was recognised in the Queen’s birthday honours list when she received her OBE. Patricia is keen to emphasise that Able2 Wear is not a fashion company, however. They do not compete with the high street, but in fact encourage their customers to shop in high street stores and develop their own individual style. Of course, there are some design features that the high street simply does not provide: Able2 Wear can provide longer cut trousers that don’t ride up when sitting and clothes cut uniquely for their customers’ requests. The company also provide waterproofs that can be put on without needing to stand up. In this way, Patricia says, their customers ‘get the best of both worlds – the latest fashions from the high street and expertly cut, properly fitting, easily managed lower body garments in comfortable fabrics’. Patricia’s company has overcome many challenges in its history, including a devastating fire and serious illness. Patricia was particularly proud, then, to receive her OBE. More importantly, she feels that the award is a sign of recognition that disabled people deserve to have clothes that fit and make them feel good about themselves. She is excited about what the future holds for the company. She is currently preparing to launch a new autumn line and continues to find solutions to the problems encountered by disabled people when looking for comfortable, correctly-fitting clothes.

We are thrilled to work with high street retailer Matalan in an extremely successful charity partnership. Through their enthusiastic, innovative fundraising in-store and the dedicated support of staff members, Matalan has to date raised more than £130k for us. Matalan recently raffled a signed Manchester United football jersey (kindly donated to us by Manchester United Football Club through Ian Corner, one of our Vice Presidents and head of Manchester-based Friends of Muscular Dystrophy fundraising committee). The raffle ran for eight weeks in stores throughout Scotland and Northern Ireland and raised a whopping £12.4k for us. We were thrilled with this massive boost to fund our work. And so was winner Tina Boles, pictured above with Colin Cheung, Deputy Manager of the Glenrothes Store where she bought the winning ticket. Matalan is also selling our orange wristbands in-store. Do buy some from your local store (or from our online shop) – they cost only a pound each – and take some photos of you and your friends wearing them. Tweet them to us @TargetMD or post them on our Facebook page and you’ll join our growing and very popular #bandoforange gallery.

On the web www.muscular-dystrophy.org/shop facebook.com/musculardystrophycampaign twitter.com/TargetMD

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Living with myasthenia gravis If I knew I was meeting a virtual zombie slayer, I might have gone to the interview better prepared. But Amanda Hayes only told me deep into our meeting at Kings College Hospital that her hobby was ridding the virtual planet of zombies. She’s also a horror movie buff. You might not pick up that ghoulish fascination when you first meet the delightful and personable 47-year-old from Northumberland Heath in Kent. You also might not pick up that she has the rare condition, myasthenia gravis. Diagnosed with it 22 years ago, Amanda finds it frustrating that while she looks fine, her ‘arms and legs don’t work properly’ and that without daily rest and regular naps, she is unable to do anything. Amanda recently got to know the Muscular Dystrophy Campaign when she was having problems accessing the disability benefits she was entitled to. Her consultant neurologist at Kings College Hospital, Dr Fiona Norwood, put Amanda in touch with the charity to help with her ESA (Employment and Support Allowance) application. Meeting and getting help from the charity turned Amanda’s situation around. “I don’t know what I would have done without the help of the Muscular Dystrophy Campaign,” she said. “The charity’s help was invaluable.” Amanda was diagnosed with myasthenia gravis in 1992 when she was training to be an accountant. She was married, and had just been on holiday to Mexico. “I needed to have a number of vaccinations because I was travelling to Mexico. When I came back from my holiday in October 1991, I felt really poorly and at first put it down to the vaccinations. By January of 1992 I was in hospital and very very poorly,” she said. Amanda struggled to chew, to speak and to swallow, and her legs and arms weren’t working properly. She found if she rested, she was slightly better but, in her words, ‘everything stopped working’. Her consultant decided to do the Tensilon test to assess whether or not Amanda in fact had myasthenia gravis. (Tensilon is the trade

name for edrophonium chloride. The Tensilon test is an injection of edrophonium chloride used to diagnosis myasthenia gravis.) Amanda’s test results proved conclusive and she was diagnosed with myasthenia gravis. The next eight months were especially tough for Amanda; her husband left her while she was in hospital, she had a thymectomy* in March, was in hospital in April and in August 1992, at the age of just 27, Amanda was medically retired. Amanda’s sunny nature immediately came to the fore. “It was the beginning of a new life for me. My mother has always told me that what life throws at you, you have got to deal with it and take it on the chin. That has helped me through so much.” Amanda became involved with a myasthenia gravis charity straight away. She said the most important thing for her was to meet people her age who had the same condition, so she set up a group for young people who were affected by myasthenia gravis. “We would meet, talk about our problems and then go out and have fun together. It is a frightening thing to be diagnosed with a rare disease. I had never heard of it before and I wanted to meet someone who had it, to get some support and understanding. Being newly-diagnosed, I wanted to meet people living with the condition and enjoying life,” Amanda said. After leading an active life in her 20s, Amanda has had to adapt to what she can and can’t manage to do. “On a bad day I cannot do anything and will sit on the sofa and read. On a good day, I can do a fair amount – housework and cooking – but I need to rest regularly. I have a problem with my swallowing and my speech therapist suggested that I should nap for two hours a day. If I don’t rest, I cannot talk properly and my legs don’t work. I try to do something every day and not all day. I do listen to my body and rest when I can,” she said.

BobEdmonson/istock

www.muscular-dystrophy.org 19

On a bad day I cannot do “anything and will sit on the sofa and read. On a good day, I can do a fair amount – housework and cooking – but I need to rest regularly...

“

Amanda is on a lot of drug therapy and she has plasma transfusions and calcium infusions once every two weeks to help with her condition and to strengthen her bones. “I am not very confident walking in busy places, as I worry that I might fall. To people in the street, I look fine but my legs are weak and people can’t see that. I use a crutch most of the time, and a wheelchair if I feel too weak. “One of the most important things to me is to keep my independence. People with disabilities should be given as much independence as they want as it’s easy to become dependent. I have lived with myasthenia gravis for 22 years, and on my own for six of them. With the right kind of support, you can do anything. “I just wish there was more funding for research into rare conditions like myasthenia gravis. If I could see an end to it, sometimes I think it would be easier.” In the meantime, Amanda has plenty to keep her busy. While husband, Andrew, and cat, Bubba, are her ‘life’, she is also a keen photographer, loves travelling (she and Andrew have been on a number of cruises over the years), she likes cooking, baking and shopping. She’d like to learn horse-riding, archery and shooting, and would love to abseil down the Shard to raise funds for the charity. Oh, and there’s also that important work of ridding the planet of zombies. That leaves time for little else. The Muscular Dystrophy Campaign provides expert advice and support for individuals living with myasthenia gravis, as well as for their families. We lead the search for treatments and cures for neuromuscular conditions. If you’d like to find out more about what we do for people affected by myasthenia gravis, do get in touch with us at info@muscular-dystrophy.org

On the web www.muscular-dystrophy.org/myastheniagravis

n Amanda’s condition Myasthenia gravis Myasthenia gravis is a chronic, autoimmune disorder which causes muscle weakness and excessive muscle fatigue. In this autoimmune condition the immune system instead of attacking infections such as viruses, mistakenly attacks proteins in the body. In myasthenia gravis the immune system specifically attacks proteins on the muscle called ‘acetylcholine receptors’ (AChRs) which normally receive the signals from nerves which tell the muscles to contract. Myasthenia gravis is an uncommon condition, affecting about 15 in every 100,000 individuals in the UK. The condition can vary in distribution of weakness and severity, both among individuals and also within a single individual the symptoms fluctuate with relapses and remissions.

*A thymectomy is the surgical removal of the thymus gland, which has been shown to have a role in the development of myasthenia gravis. Roughly 10 percent of patients with myasthenia gravis have a thymoma, or a tumor on the thymus gland. While most of these slow-growing tumors are benign, some may be cancerous (malignant).The thymus gland is part of the body’s immune system, and plays its largest role early in a person’s development. Surgical removal of the thymus has no effect on the immune system for someone after they are born.The thymus is in the front part of the chest just behind the breast bone and in front of the heart, an area known as the anterior mediastinum, with parts (lobes) extending into the neck. nmh.org

www.muscular-dystrophy.org

All for Adam

When Sarah Jenner, Volunteer Fundraising Manager for the South East, went to meet the Charlicks at their Gravesend home, celebrations were well underway for Adam’s eighth birthday. The cake was being iced in the kitchen, the windowsill was full of birthday cards and Adam was head-down on his most treasured possession – a shiny new Nintendo DS.

“I am playing Mario Kart at the moment,” he tells me proudly as he shows me the screen. “It’s the game that I wanted the most.” Giving his baby sister Libby a hug, he is soon off upstairs to give the game his full attention. “He was so excited when he opened it this morning,“ smiles mum Toni, “I am not sure we will be able to get him off it until the battery goes flat!” Adam was diagnosed with Duchenne muscular dystrophy in October 2009, when he was four years old. After his teacher mentioned her concerns to the family, including problems with Adam’s balance and co-ordination, the family soon found themselves being referred for blood tests and an eventual consultation at Evelina Children’s Hospital. “We told Adam almost as soon as we received the diagnosis,” Toni says. “He understands that he has a problem with his muscles and that he can’t run as fast as his friends. He uses his wheelchair when he needs to and wears his leg splints at night.” The family has had a few challenges at school, with Adam’s manual wheelchair taking over six months to arrive and his specially-adapted seat for school being given in error to another child. But together they have fought to overcome these difficulties and remain positive about the future. Adam is in his top set at school and received excellent results in his SAT tests. “Kids are amazingly resilient and Adam just gets on with it really. It’s hard to think of all the things we have had to adjust, there are always lots of little things you have to consider because of his condition. We just try to be realistic; we don’t want to put our lives on hold because we don’t want Adam to miss out.” First introduced to the charity’s information service through their consultant at Evelina Children’s Hospital, the family has

received support and information from the charity that they have found invaluable, particularly around the steroid medication prescribed for Adam that he now takes on a daily basis. They have since thrown themselves into fundraising to support the work of the charity. “We both just decided we needed to do something”, says Phil. “We don’t want to just sit here and dwell on it. “The Muscular Dystrophy Campaign golf challenge [Four Course Classic] was the first fundraising event we got involved with after Adam was diagnosed. Two friends, my uncle and I played from 4.15am to 9pm, and by the end of it we were using our golf clubs to prop ourselves up! It was definitely worth it and we raised £6,800 thanks to the incredible support of our family and friends.” The family has now set up their own family fund, named Adam’s Fund, through which they will channel all their future

want to fundraise as much as we can “andWegive something back to a charity –

“

you’ve offered us huge amounts of support. Toni Charlick

fundraising efforts. This will include a repeat of their hugely successful Hollywood-themed ball that Toni organised earlier this year, raising more than £4,000 for the charity. With many fundraising plans afoot, one thing’s for sure: this family won’t be sitting down for a rest anytime soon. If you’d like to start your own family fund and raise funds with admin support from the charity, do get in touch with us on 0845 872 9058 or volunteerfundraising@muscular-dystrophy.org

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Access to Work scheme concerns

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

Preliminary results of exon skipping clinical trial In late September, pharmaceutical companies Prosensa and GlaxoSmithKline issued preliminary results of their phase III clinical trial of drisapersen – a molecular patch designed to skip exon 51 of the dystrophin gene. The trial failed to prove that boys who received drisapersen could walk further than those who received a placebo. The companies will now carry out a full analysis of all their drisapersen data in an effort to understand fully the safety and effectiveness of the potential treatment. While news of these trial results will be disappointing for individuals and families affected by Duchenne muscular dystrophy, it is important to note these results relate only to drisapersen. Molecular patches based on different chemistries are being developed – eteplirsen by Sarepta Therapeutics, for example – and these results should not directly affect these other ongoing trials. The Muscular Dystrophy Campaign funds a broad range of research projects investigating several different technologies and techniques with the potential to treat Duchenne muscular dystrophy. Because not all clinical trials are successful, it is important to explore all potential treatments and not focus on any single avenue to treatment. By funding a broad range of research projects we can maximise the chance of developing treatments that are both safe and effective. Robert Meadowcroft, CEO of the Muscular Dystrophy Campaign said the charity’s goal remained to find effective therapies for every single person affected by this devastating muscle-wasting condition. “This news will be a blow to many families of children with Duchenne muscular dystrophy. However, while we await further news from these pharmaceutical firms on their next steps, it is crucial to remember other exon skipping projects are still underway, and alternative chemistries have shown us some encouraging results. We continue to fund a diverse programme of research into treatments for Duchenne muscular dystrophy, relating to both exon skipping and other techniques such as utrophin up-regulation, stem cell therapies and gene therapies,” he said. For further information on the preliminary results of this clinical trial, do read the comprehensive article in Target Research (p15).

On the web bit.ly/exonskippingFAQs bit.ly/exontrials

Trailblazers recently met with Esther McVey MP, the then Minister for Disabled People at the Department for Work and Pensions in Westminster to challenge the Government’s Access to Work scheme. After questioning the support available when on work experience, internships and volunteer placements, Trailblazers also raised concerns about the lack of careers advice for disabled students at university and promotion of the Access to Work scheme. These concerns were raised as recommendations in the young campaigning group’s 2010 report, Right to Work and the 2011 Sayce Report. Trailblazers Ambassador Sulaiman Khan shared with the Minister his experience of relying on family members to take time out from their own jobs in order to have support on unpaid work experience. He also highlighted how current schemes don’t consider disabled people who may want to work in creative industries.

On the web Trailblazers Right to Work report: bit.ly/RightToWork10 Sayce Report 2011: bit.ly/SayceReport11

Call for clinical trial transparency The Muscular Dystrophy Campaign has added its support to the calls of the House of Commons Science and Technology Committee to increase the transparency of clinical trials. A new report published recently calls on the Government to enhance its efforts to increase transparency. Earlier this year we supported a call for all clinical trials to be registered and the results published, whether positive or negative. Currently, organisers of clinical trials do not have to release all the trial results they have about a potential drug. We are aware that our supporters rightly have an expectation that funds they raise will be used to move potential new treatments into clinical trials and the clinic as quickly as possible. Encouraging groups to publish clinical trial results could speed up this process and give our families faster access to potential new treatments.

www.muscular-dystrophy.org 23

Duchenne forum We are delighted to announce a funding partnership dedicated to beating Duchenne muscular dystrophy. The Duchenne Forum – a collaboration between the Muscular Dystrophy Campaign and Alex’s Wish, Duchenne Children’s Trust, Duchenne Research Fund, Joining Jack and Harrison’s Fund – will accelerate progress in the search for effective treatments and cures and, with joint funding, will be able to make larger investments and move promising therapies forward. (See Target Research, p4, to find out more about this exciting collaboration.)

Improving access to rare disease drugs As part of the charity’s campaign to improve access to rare disease drugs for families affected by muscle-wasting conditions, a new report was launched in early September, calling on Government to establish a ring-fenced fund for rare disease drugs. While potential treatments for Duchenne muscular dystrophy are finally in clinical trials, parents fear that the “race against time” for their children to be treated may be lost owing to unnecessary delays, funding issues and bureaucracy. The All Party Parliamentary Group (APPG) for Muscular Dystrophy, who presented the report to Health Minister Norman Lamb MP, is particularly concerned that funds previously earmarked for rare disease drugs have now been merged into the overall budget for NHS services commissioned across England. This leaves expensive therapies for rare conditions competing for funds with medications for prevalent conditions, such as diabetes or heart disease. Following the APPG’s six-month inquiry, supported by the Muscular Dystrophy Campaign, the hard-hitting report – Access to high-cost drugs for rare diseases – also reveals serious concerns over the approval process for new drugs used by the National Institute for Clinical Excellence (NICE), which they fear may delay – or even prevent entirely – cutting-edge therapies reaching children and young people. The APPG is also calling on NICE to assess treatments for rare conditions differently from less rare conditions and not to deny them on the grounds of cost, ensuring an effective cost benefit analysis is carried out. It is also calling on the Medicines and Healthcare Products Regulatory Agency (MHRA), NICE and NHS England to speed up access to life-changing drugs after the final stages of clinical trials to ensure there are no major delays in treatments reaching those who need them. Dave Anderson MP, who lost his brother, sister, nephew and niece to myotonic dystrophy, led the inquiry. “As Chair of the Group, I have heard from patients, families, NHS commissioners, the pharmaceutical industry and regulators and seen that successfully developing an effective treatment is far from the end. If treatments are proven to be safe and effective, the UK is in a position to licence and deliver them swiftly. We most certainly are not now.” Dave Anderson MP tabled a House of Commons motion in support of the report. Please ask your MP to sign the motion. If you’d like to find out how to do that, do get in touch with Jonathan on 020 7803 4839 or j.kingsley@muscular-dystrophy.org

Care provision secured in the SE In late September, the Muscular Dystrophy Campaign received the welcome news that funding for the South East Coast neuromuscular care co-ordinator post will now definitely continue until the end of March 2014. There had been a significant risk that funding for the post would not be continued beyond October 2013. This is thanks to the pressure applied on the NHS by our supporters in the region, alongside the support secured by the charity of several MPs. There is still more to do to ensure the long-term funding and security of the post after March next year, but we are taking steps to address this, such as discussing funding options with the London specialist centres. In addition, through our Bridging the Gap project, we will be identifying and addressing the gaps in services across the South East Coast region. For more information on how you can get involved in our campaigns in the South East Coast region and across the country, please get in touch with Jonathan on 020 7803 4839 or j.kingsley@muscular-dystrophy.org

We’re Bridging the Gap of info As part of the Muscular Dystrophy Campaign’s new Department of Healthfunded Bridging the Gap project, we have begun work on the first-ever online map of neuromuscular services in the UK. The online map – a hub of all things neuromuscular in the UK – will act as a one-stop shop for people with neuromuscular conditions, as well as clinicians and health professionals. It will include details of specialist centres, outreach clinics, physiotherapy services, speech and language therapy services, psychological support, occupational therapy services, hydrotherapy pools and details of your local care advisor. We will work with clinicians to develop emergency care plans for neuromuscular conditions and these will also be hosted on the website, alongside training resources for healthcare professionals. The Bridging the Gap team is also compiling data from recent audits of specialist neuromuscular centres around the UK and will uncover gaps in facilities such as hydrotherapy pools in time for next summer’s launch of the map of services. If you have information about your local hydrotherapy pools, please email Bobby Ancil at b.ancil@muscular-dystrophy.org

PR Team of the Year We were delighted in October to win the 2013 Charity Times PR Team of the Year award. Our submission, which focused on the media campaigning of the Trailblazers, edged out the competition for its ‘niche campaign that leveraged the power of real voices and stories, underpinned by skilful coaching and management of its spokespeople and a strong emphasis on stakeholder results’. Also listed as Campaigns Team of the Year 2013, we’re thrilled that the work of the Muscular Dystrophy Campaign, including Trailblazers, volunteers and supporters, is recognised in this way.

www.muscular-dystrophy.org

Update on

advocacy

£535,531 This year, the Muscular Dystrophy Campaign has successfully taken on more than 100 cases, securing £535,531worth of care, support and equipment

The Muscular Dystrophy Campaign’s advocacy service has made a real difference to many people’s lives. Where people affected by muscle-wasting conditions have struggled to get the assistance they require to live a full and independent life, they have approached our advocacy service to help them fight for the services, benefits and equipment they are entitled to. In partnership with the prestigious law firm, Hogan Lovells, who provide pro bono legal assistance for patients and families, the charity has dealt with more than 100 cases during the past year, where people have received unfair decisions. By writing on behalf of the person concerned, engaging and briefing local MPs and gaining media coverage and legal representation, the Muscular Dystrophy Campaign has successfully overturned many cases, securing more than £535,531 worth of care, support and equipment previously denied.

Round the houses, and winning Sarah Croft (28) from Exmouth in Devon is an active Trailblazer. She had been living in a property managed by a national disability charity and, after leaving the property, received a letter from the charity stating that she owed rent arrears and deposit for the property. Despite receiving Sarah’s evidence to the contrary, the charity refused to give up its case against Sarah. They pursued the case until it had escalated to the level where it had been taken to county court. At this stage, if the court deemed Sarah liable to pay, she would have had to pay a sum of £6,500 including court fees.

fter contacting our advocacy team through the Trailblazers Facebook page, Sarah asked us to take her case on. We started investigating the case. We were able to secure proof of the deposit payment and bank statements outlining the rent paid. We drafted a letter and appealed to Sarah’s local MP for support. He obliged and wrote a letter alongside ours. The national charity wrote to our advocacy team, apologising profusely

and agreeing to waive all court proceedings against Sarah. In addition, they credited Sarah with the amount that they had claimed she owed. Our advocacy service is available to anyone affected by a neuromuscular condition and is provided free of charge. We take on cases from across the UK . We also have an Advocacy Pack, which outlines the steps you can take to fight for your rights yourself. Do get in touch with our advocacy team if you’d like a copy of the pack.

Securing a home care package for Lee Lee Thorne (45) from Wisbech in Cambridgeshire came to the advocacy service earlier this year when he was being forced to remain in a care home. Following a tracheostomy operation, Lee was told by his local Clinical Commissioning Group that his stay in a care home would only be a temporary arrangement as the panel ratified his home care package. The panel subsequently denied Lee’s home care package and said that he would have to remain in the care home for the rest of his life. With the support of the charity’s press office and our pro bono law firm, Hogan Lovells, the advocacy team went to the local press with the story. We were able to locate a local family, with a son who has Duchenne muscular dystrophy and similar care needs to Lee, who was in receipt of a home care package. The value of this care package was far lower than what the Clinical Commissioning Group was saying Lee’s would cost. As cost was the reason Lee’s home care package was refused, Hogan Lovells was able to use this information to force the hand of the Clinical Commissioning Group. They have now agreed to provide Lee with a home care package worth £50,000 a year.

If you are struggling to get vital adaptations made, or battling to get the benefits, services and equipment to which you’re entitled, do get in touch with our advocacy team on 0800 652 6352 or info@muscular-dystrophy.org

www.muscular-dystrophy.org 25

The new Avantgarde3 Living ahead!

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

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

0845 600 7664 · www.ottobock.co.uk

www.muscular-dystrophy.org

Where would we E be without you?

Hello. I’m Ethan. I’ve got lots of toys. Some are on my bed and lots are in my cupboard. I like cars. I’ve got my own power wheelchair.

than has congenital fibre type disproportion. He is one of a handful of people in the world with this very rare condition. The Muscular Dystrophy Campaign has given his mum and dad emotional and practical support, as well as information about Ethan’s condition. The charity also funds pioneering research into muscular dystrophy and related neuromuscular conditions. Ethan’s mum and dad hope that one day there will be an effective treatment – or indeed a cure – for Ethan’s condition.

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

The only reason we’ve been able to make the huge strides we have over the last 50 years is because people like you support us. And part of that support is to leave us gifts in your Wills. You don’t have to be wealthy to leave a gift to us in your Will. When you remember the Muscular Dystrophy Campaign in your Will, you are helping to build a future for children like Ethan. Today. None of this work, now or in the future, is possible without you. For more information on legacies and to request an information booklet, please get in touch with Sarah Greenwood: t: 020 7803 4834 e: s.greenwood@muscular-dystrophy.org w: www.muscular-dystrophy.org/legacy

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

Photograph: courtesy of Mansfield Chad

www.muscular-dystrophy.org 27

Teaming up for powerchair football

On the web thewfa.org.uk

The Wheelchair Football Association (WFA) is delighted to announce its partnership with the Muscular Dystrophy Campaign to build awareness of powerchair football, grow capacity and get more people with muscle-wasting conditions involved.

AltoClassic/istock

he Olympic and Paralympic Games in 2012 have motivated many young disabled people to take up sport. Powerchair football has emerged as one of the most popular and fastest growing sports for people living with muscular dystrophy or a related neuromuscular condition – more than half of all players are affected by a neuromuscular condition. Gary Kernahan from the Muscular Dystrophy Campaign said: “We are delighted to be working together with the WFA to promote powerchair football in the UK. Being part of a powerchair football club brings health and social benefits for players – but it can also benefit parents, siblings, partners and friends. We are committed to helping promote and improve opportunities for young disabled people to participate.” Sam Bull, National Development Manager, for the WFA said, “With the increase in the number of powerchair football clubs, we have shown the huge demand for our sport. We now have a great opportunity to raise the profile of powerchair football and recruit new players to continue our growth and development. We are lucky to work with some great partners who have enabled us to achieve so much!” September saw the return of the WFA Powerchair Football National League. This season will be the biggest competition yet with 24 teams taking part and there are no signs of early-season cobwebs: the 12 teams notched up an impressive 105 goals across the 26 fixtures. Northern Thunder, Aspire PFC and Sporting Club Albion were all fresh from the Champions Cup held in Paris during the summer, remaining unbeaten through all of their games during the opening weekend. Last year’s surprise package, Northern Thunder Blues, continued where they left off, picking up 10 points from their opening four games. They will be hoping to break into the top three for the first time in the club’s history. At the other end of the table, Premiership new boys Brighton and Hove Albion certainly showed they were no pushovers, successfully picking up points against both Sporting Club Albion Throstles and Villa Rockets. However fellow new-boys Reading PFC

are still searching for their first points of the season. They showed glimpses of Premiership quality and will be hoping that will stand them in good stead for the rest of the campaign. Bolton Bullets, Norwich City, Celtic Storm, Nottingham PFC, Sporting Club Albion Throstles and Villa Rockets all picked up their first win of the season during the opening weekend. They look set to pose difficult opposition for any team and are expected to cause some upsets throughout the season! The Championship division kicks off in October and will see new teams – St George’s Knights and Manchester PFC – take part for the first time. Muscle Warriors and Swindon Rockets will both be looking for strong seasons as they will be hoping to gain promotion and return to the Premiership. The WFA has appointed Chris Gordon as their new Press Officer. Currently playing for Sporting Club Albion, Chris has recently completed a degree in Sport Business Management at the University of Worcester and is keen to gain some firsthand experience, while promoting the sport he loves. He will work with all WFA staff to implement a marketing plan, which has been written in partnership with the Muscular Dystrophy Campaign. If you have any news or articles you would like to submit to the WFA, please email Chris on press@thewfa.org.uk

Powerchair Football Week The Muscular Dystrophy Campaign is set to launch the first ever Powerchair Football Week between 25 November and 1 December. This will offer everyone the opportunity to find out all about the sport and how to get involved: players, managers, referees, coaches and club founders will all be sharing their stories through social media and our website. If you’d like to share your passion for the beautiful game, please get in touch with PR Manager, Claire Methven, on 020 7803 4832 or c.methven@muscular-dystrophy.org

www.muscular-dystrophy.org

Four Course Classic We are thrilled to announce that one team of from this year’s Four Course Classic golf challenge raised a fantastic total of £3,777. In recognition of their excellent fundraising efforts, Paul Webb, Jon Douglas, Darren Wright and Jon Clarke will all be jetting off to Kouklia, Cyprus for a golfing break where, courtesy of Thomson, they will be staying at the superb Intercontinental Aphrodite Hills Hotel. Would you like to join in our popular golfing marathon next year? You get to play 72 holes in a single day and on four different courses. And all of this on one of the longest days of the year. If you’d like to challenge your golfing stamina and register for next year’s event, or you’d just like to find out a bit more about it, do get in touch with Hayley on h.gill@muscular-dystrophy.org or visit www.fourcourseclassic.co.uk

Get involved

We have a wide range of fundraising events planned for 2013. We’d love you to join in! www.muscular-dystrophy.org/events

Quiztastic in Hammersmith On Thursday 19 September more than 350 people gathered at the Hammersmith Town Hall to pit their wits against London’s finest brains for The Q Trust Quiz 2013. Radio 4’s Fi Glover asked the questions and after eight rounds of challenging trivia, the team known as ‘Universally Challenged’ emerged victorious. But the true winner was the Muscular Dystrophy Campaign, which benefited from the more than £25,000 that was raised on the night. Thanks in particular to Jemima Reynolds and the Q Trust Quiz Committee for their hard work, and to all those who took part in the fun and to those who donated prizes for the raffle. The Q Trust was set up in 2001 by Mark Reynolds in memory of his friend Quentin Crewe, known to many as Q, who was a celebrated journalist, writer and intrepid traveller. Mark worked tirelessly to raise awareness and funds for muscular dystrophy research until he died in 2005. Friends and family of Quentin’s and Mark’s have continued the work of The Q Trust and have raised over £1.3 million. The money raised at the Quiz will go towards The Q Trust Fellowship, which is aiming to establish a clinical fellow in each of the specialist Muscle and Nerve Centres in London, Oxford and Newcastle. For more information please get in touch with Jemima Reynolds at rignallbarn@btinternet.com

Celebrate Christmas with us at our shop Our Christmas catalogue 2013 is filled with a selection of lovely cards and gifts for you to choose from. And when you buy any of our cards or gifts, you’re also giving the priceless gift of hope to the individuals and families we support around the UK. We also have some lovely stocking fillers for you to choose from. Some of our supporters buy our popular charity branded items (our coin keyrings or our pin badges) to use as wedding favours, so why not consider doing the same? There’s also our orange wristband – we’ve named it the #bandoforange – as well as Jon Hastie’s award-winning DVD: A Life Worth Living: Pushing the boundaries of Duchenne. You can also buy a virtual gift: for just £20 you can invest in our Scientists of the Future Fund to help us keep our vital, groundbreaking research going. So send your friends and family our Christmas cards and products and share with them your gift of hope for the 70,000 people in the UK affected by muscle-wasting conditions. If you’d like a copy of our Christmas catalogue, do get in touch with Sarah on 020 7803 4834 or s.greenwood@muscular-dystrophy.org

A unique product for you We have an exclusive Christmas card designed by Scottish artist, Stella Maris Kinread. The beautiful card Gloria, Hosanna in Excelsis, was inspired by the artist’s then home county of Kinrossshire. “I was wheel/walking down Lethangie Lane at the back of Loch Leven in the snow, and I looked across the fields and noticed the spire of the decommissioned church on South Street Milnathort. I made a quick sketch and later painted the scene from the warmth of my studio.” Stella, who has limb girdle muscular dystrophy, has been involved with the Muscular Dystrophy Campaign for more than ten years. A regular attendee at our Scottish Conference, Stella is also a dedicated member of our Scottish Council and is integrally involved in our Perth fundraising branch.

On the web www.muscular-dystrophy.org/ shop/christmas www.artygems.com

Illustration: goldhafen/istock

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Run with us on beautiful routes Liz Fraser, a broadcaster and writer with a passion for running, has taken on the Muscular Dystrophy Campaign’s Town and Gown 10k in both her hometown of Oxford and more recently in her adopted home of 20 years: Cambridge. She was the first woman over the line in Cambridge in October this year. Liz is delighted the event has now taken up residency in Cambridge. She has taken part in both the inaugural race – in torrential rain last year – and the second event in sunshine this year. “Running is a real personal challenge for me. I need a target – something to keep me going and get me out of bed on the coldest of days. Registering for charity runs not only gives you a focus for training, but you also know that even just by taking part and paying the registration fee you are doing something positive for a really good cause. The Town and Gown 10k races are good fun and follow beautiful routes.” The Muscular Dystrophy Campaign’s newest Town and Gown 10k event takes place in March 2014 in the beautiful university city of Durham. If you’d like to follow Liz’s lead and take part in an inaugural event, have fun and run along a beautiful route, do visit our website and sign up.

Fund-cycling

r Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign, heads the charity’s role in funding groundbreaking research for treatments for muscular dystrophy and related neuromuscular conditions. Inspired by families she meets through her job, Marita will get on her bike next year and push the pedals to take on the Muscular Dystrophy Campaign’s South East Asian cycle challenge, taking her on an eightday journey along the Mekong River. Marita hopes to raise £4,000 towards the charity’s research and support services for the 70,000 families in the UK who are affected by muscle-wasting conditions. To join Marita on this challenge or to find out more about the Vietnam to Cambodia Cycle please visit www.muscular-dystrophy.org/cyclevietnam or do get in touch with us on 020 7803 4828 or events@muscular-dystrophy.org

On the web www.townandgown10k.com

Great North Run 2013

Alpine at the Microscope Ball

Huge congratulations go to our 150 Team Orange runners who took part in the Great North Run in mid-September in Newcastle upon Tyne. It was a wonderful day, the weather played along, and over £70,000 was raised for the charity. If you’re a new or experienced runner and would like to do the Great North Run in 2014, do contact Hayley on 020 7803 4824 or h.gill@muscular-dystrophy.org

On 10 October, over 700 people from the property industry gathered and together raised a whopping £250,000 for the charity. The alpine ski-themed Microscope Ball, now in its 30th year and held at Westminster Park Plaza in Waterloo, is one of the industry’s most prestigious and highly-anticipated events. Our sincere thanks to the Microscope Ball Committee for another successful Ball.

Spirit of Christmas concerts 2013 Join us and welcome in the festive season at one of our eight wonderful Spirit of Christmas Carol concerts all across the UK. Our much-loved and popular concerts promise you a magical, festive, candlelit evening of carols and readings. The concerts are all held in early December in beautiful churches in Oxford, Gloucester, Eastbourne, Henley, Writtle, Clapham, Lanarkshire and Glasgow. Enjoy the warm glow of Christmas by coming along and spreading the Christmas cheer to families affected by muscle-wasting conditions. This year’s Oxford Spirit of Christmas carol concert will be held once again in the beautiful Christ Church Cathedral on Tuesday 3 December and will feature candlelit carols and festive readings by stars of stage and screen. The magnificent Gloucester Cathedral again plays host to an evening of carols and festive delight on Wednesday 4 December. Do come and join us at a Spirit of Christmas carol concert near you. Find out more at www.muscular-dystrophy.org/christmas or buy tickets at www.muscular-dystropy.org/shop

Make Today Count 2014 Since launching on 29 February 2012, our Make Today Count fundraising campaign has seen more than 200 people skydive for us, together raising £175,268 to fund 5,016 hours of research into Duchenne muscular dystrophy. If you would like to do the same, join our 2014 Make Today Count team at www.muscular-dystrophy.org/ maketodaycount2014

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Hi everyone, It’s been another busy few months, and now Christmas is nearly here! Our online shop is stocked with Christmas goodies, so do come and view our range of beautifully designed cards and gifts at www.muscular-dystrophy.org/shop You may have noticed our new-look eNewsletter which we hope will be a little easier for you to read on the go. If you have any comments or feedback, I’d love to hear them, so please do get in touch. And of course, you can sign up to receive all the latest news by email here www.muscular-dystrophy.org/enewsletter. Our Volunteer Fundraising team have been busy working on our new Make Today Count Facebook page www.facebook.com/MakeTodayCount100 where you can find out more about the campaign and meet past participants and new recruits. Finally, I’d like to say a huge thanks to those of you who have been sharing your fundraising achievements with us online. We love receiving tweets and Facebook messages about the incredible challenges you’ve taken on, so do keep them coming! We’re now also on Instagram – check out @TargetMD for more photos and videos. Best wishes for the festive period and wishing you all a healthy and happy New Year!

Helen Putnam Online Manager

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

Hello from

Target Research In the final edition of Target Research for 2013, we introduce our new research grants which have been awarded by the trustees. The seven projects have all been assessed through our rigorous peer review system to ensure that we continue to fund only world-class scientific research. While the projects focus on investigating several different ways to develop new potential treatments for boys with Duchenne muscular dystrophy, the research will also have the potential to benefit people with Becker muscular dystrophy and other neuromuscular conditions. In the second feature article, we take a look at biomarkers, and how researchers and clinicians are working to find safe, easy and non-invasive ways to assess muscle damage and to monitor disease progression. These will be important in future clinical trials as they will help clinicians to measure the effectiveness of trial treatments. As ever, we also have a news round-up from the UK and around the world. In this issue we also include the latest updates on mitochondrial myopathies as well as a report from the All Party Political Group for Muscular Dystrophy on access to drugs for rare diseases. I do hope you enjoy this edition of Target Research. If you have any questions or suggestions for future articles please do get in touch.

Neil Bennett A few of the cards on offer at www.muscular-dystrophy.org/shop

Editor, Target Research t: 0207 8034 813 e: research@muscular-dystrophy.org tw: @ResearchMDC

www.muscular-dystrophy.org 31

Target MD and Target Research

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

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

I wish to make a donation of £

Gift Aid Declaration Using Gift Aid means that for every pound you give, we are able to reclaim back from HM Revenue and Customs the tax paid on it – helping your donation to go further. Please tick the box below: Yes, I would like the Muscular Dystrophy Campaign to treat all gifts I have made in the past four years, today’s gift and all future gifts from the date of this declaration as Gift Aid donations. No, please do not claim Gift Aid on my donations.

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

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New paediatric team in the North West

I realised that, without specialist “advice – and you cannot transfer information about other conditions into a neuromuscular context – I could not give the optimal care for the children in my practice. Dr de Goede

“

www.muscular-dystrophy.org 33

Families in the North West of England affected by muscle-wasting conditions can now benefit from the expertise of a new paediatric neuromuscular team at Lancashire Teaching Hospitals NHS Foundation Trust. Thanks to the hard work and determination of consultant paediatric neurologist, Dr Christian de Goede, doors opened on this new paediatric neuromuscular clinic in April.

Hohenhaus/istock

he clinic, which runs twice a month at different locations in Lancashire, offers the expertise of a team (pictured left): a neurologist, a specialist neuromuscular nurse, a specialist physiotherapist and an occupational therapist, all supported by a clinical psychologist. Dr Christian de Goede began working as a consultant paediatric neurologist at Royal Preston Hospital in 2006 and, from his training and work with Dr Stefan Spinty and his specialist neuromuscular team at the Alder Hey Hospital in Liverpool, immediately understood the value of such a team. “Before the paediatric neuromuscular team began work here at the Royal Preston Hospital in April, I was the team. I wanted to develop things, and my ambition was to set up a neuromuscular service. I started by making a list of the patients with musclewasting conditions to have an idea of the numbers we were looking at and to make sure they didn’t disappear off our system. “I was part of the Muscle Interest Group that meets two or three times a year, and I also joined the North Star project, entering clinical information of boys with Duchenne muscular dystrophy into this database. Working together with national colleagues is a great opportunity to learn and share practice. “Because there was no dedicated team I worked with local partner agencies to make sure we could together provide a good level of service for patients and their families. I organised a training day for the therapists in the region to learn the North Star assessment process and they have been very helpful in taking on these assessments for me. I would also visit patients in their locality, with their local team and develop links with the local clinicians and therapists,” he said. What Dr de Goede struggled with most was the integrated, specialist advice. “I realised that, without specialist advice – and you cannot transfer information about other conditions into a neuromuscular context – I could not give the optimal care for the children in my practice.” Dr de Goede gathered evidence and compiled a report that was seven years in the making. The end result was getting the green light to recruit a specialist neuromuscular team, with funding from Payment by Results and support from the executive team at the Royal Preston Hospital, who recognised the need for such a team. “We got all we needed and more than we wanted. Additional to the much-needed specialist nurse and physiotherapist, we now have support from an occupational therapist and a clinical psychologist. I’m absolutely delighted,” he said. The appointment process took time and in April this year, the team held their first clinic at Preston and at Blackburn in May. The long-term goal is to run more local clinics in other areas, in particular in Blackpool and Lancaster. “Local families now have a longer appointment, giving them time to address their concerns. They can meet with the whole team that manages their health care, and we try to combine this

with other things, like a heart assessment and North Star assessment on the same day. Several families have told us the clinic is a fantastic experience,” Dr de Goede said. Not wanting to lose the connection with the Alder Hey clinics, Dr de Goede still runs three clinics a year with Dr Stefan Spinty, who also gives the team some training. Children come to the service through the general neurology service, through referral by a GP or paediatrician to the consultant neurologist. If they are diagnosed with a muscle condition, they go to the multidisciplinary clinic for long-term management and support. “From a diagnostic point of view, I feel proud and privileged to work in Preston. We have everything we need here: a good pathology service, access to anaesthetics for muscle biopsies, neurophysiology services and muscle MRI scans. With earlier diagnosis of muscle conditions today – most diagnoses are made under the age of three – the needs of families today are very different from what they were,” Dr de Goede said. Zoe Pilborough, specialist physiotherapist, has worked at the Royal Preston Hospital for eight years. She works with a variety of neurology and paediatric patients, and works closely with the Liverpool physiotherapy team to share knowledge and best practice. “We offer physical and chest physio, we develop links with community physiotherapists, advise and assist children between clinics, and provide a service to a wider region including central Lancashire, east Lancashire and Blackburn,” said Zoe. The recruitment of a specialist neuromuscular nurse took some time; it was important to find someone who could really empathise with families. The search ended with the appointment of Laurie Bibby, who brings with her a number of years’ experience of working in a local children’s hospice, and within a service in Blackburn for children with complex needs. “It’s great to offer a support mechanism for families and children, along with other professionals and the local teams. We meet families together – each one of us understanding what future might hold for the diagnosis. It’s lovely for families to work with a team,” Laurie said. Eileen Noble, the team’s occupational therapist, focuses on how much the mind and body work together. She works with families early on and gets to know them and what makes them tick, before developing an individualised programme that promotes choice and assists independence. Dr de Goede, who works closely with the Muscular Dystrophy Campaign and uses the charity’s factsheets to give out to newlydiagnosed families, is thrilled with his team. “I could have got a team where I’d have to tell them what to do, but they tell me what to do! Everyone puts in new ideas and it is inspiring to work with such a team. I know what is best in terms of medicine, but together we provide an integrated – and ideal – service for the families. It just works,” he said. To find out what is available in your area, do get in touch with us on 0800 652 6352 or info@muscular-dystrophy.org

www.muscular-dystrophy.org

Planning a holiday? We won’t hold you back. Specialist medical travel insurance from World First Here at World First we don’t think your medical condition should stop you from travelling. Last year our specialist travel insurance policies enabled thousands of people to travel – at a price that’s fair - who might otherwise have not been able to. So if you are thinking about going away this year, don’t go without us. • We cover 1000s of medical conditions, including muscular dystrophy and related conditions • We offer up to £10m emergency medical expenses • Our policies include 24/7 emergency assistance • Getting a quote is easy and medical screening takes minutes

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0845 90 80 161 or go online at www.world-first.co.uk World First is arranged by Rothwell & Towler (2013) Ltd. An appointed representative of Crispin Speers & Partners Ltd who are authorised and regulated by the Financial Conduct Authority (FCA) register number 311507. Terms and conditions apply. All quotes are subject to screening for existing medical conditions.

ampaign C y h p o r t s y D r a Muscul

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

Sunday 9 March 2014 Lace up your trainers, don some orange, and come and run for us in our brand new Muscular Dystrophy Campaign Town and Gown 10k in Durham.

Be one of the first! Come and join 500 runners on this multi-terrain and scenic 10k that stretches along the River Wear, allowing you to embrace the stunning sights of Durham. Whether youâ&#x20AC;&#x2122;re a serious runner or a fun runner, help us turn Durham orange in this chip-timed race and fundraise for the Muscular Dystrophy Campaign. Our fight against muscle-wasting conditions, which affect 70,000 people in the UK, depends on the support of people like you. Register today: t: 020 7803 4820 e: townandgown10k@muscular-dystrophy.org w: www.townandgown10k.com

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

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