TargetMD 2013 (1 of 4) by Muscular Dystrophy UK

magazine

Target MD Issue 1 of 4 2013

Travel and leisure Travel hints and tips

Sports, cycling or playing music

Richard Attenborough Fellowship Fund Campaigning news

Research updates

Powerchair football latest

Fundraising events

Trailblazers

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 03

welcome

In these early weeks of 2013, I am sure we are all looking forward to brighter days to come not only in the sense of warmer weather to follow the snow and ice but also in terms of hoping to see further progress in research in the months ahead. Thanks to our magnificent supporters fundraising to support our research projects, last year saw us further progress in the development of potential treatments for some of the conditions such as Duchenne muscular dystrophy and mitochondrial disease. We want to press our foot down hard on the accelerator in 2013 – we know we are turning a corner and must do all we can to push ahead with vital research.

“ We are working to ensure the

While we recognise the crucial importance of developments in research we know that securing maximum benefit from potential treatments will also require specialist

growth and development of a care, monitoring and support to be provided by the NHS. Specialist care should network of specialist centres really really be available now to all children and adults living with the conditions, of course, gets under way in 2013...“ and the Muscular Dystrophy Campaign has called for all patients in the UK to have access to specialist, multidisciplinary healthcare teams – ideally based at a growing number of NHS Centres of Clinical Excellence. We are working to ensure the growth and development of a network of specialist centres really gets under way in 2013, as we focus the charity’s ongoing campaigning work with clinicians and NHS decision makers, backed as always by people with the conditions. The network of Centres is needed to deliver specialist care today and crucially be ready to monitor and supervise the delivery of groundbreaking new treatments which we trust will become available in the future. Despite the very encouraging progress being made, further efforts are needed in research – hence your support continues to be absolutely vital –and there are undoubtedly significant hurdles still to be overcome. We lead the fight against muscle wasting conditions on all fronts, of course, and it is good to highlight the impact our advocacy service is making. In less than two years we have secured more than £1million in grants, care packages and other support for people initially refused help and this underlines the importance of our work. Please do get in touch if you need our support. Enabling people to live independently, pressing for first class healthcare to be available and driving forward research are key priorities for us and, with your support and continuing fundraising efforts, I am sure we will see significant progress in 2013.

Robert Meadowcroft Chief Executive

www.muscular-dystrophy.org

Contents Features

News

Regular

A mud and knobblies adventure

Access to specialist care

Letters

Reaching that peak

Mitochondrial myopathy

Travel

Meet the Peopleâ&#x20AC;&#x2122;s Champion

Special recognition awards

Hints and tips

Play great music

Realities of life

Update on advocacy

Marching on together

Specialist care improvements

Get involved

Golfing, biking, swimming

Access to sport

Sport

Like riding a bike

Social care in scotland

Best of the web

Fellowship Fund

MBE for Ollie

Mr and Mrs Christmas

www.muscular-dystrophy.org 05

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

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

Join 4,857 others and follow us for regular updates on all areas of our work @TargetMD

Interact with us and more than 9,039 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 61 Southwark Street London SE1 0HL 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

Hello,

Welcome to 2013 and our first edition of Target MD, which focuses on travel and leisure. I hope that you will be inspired, encouraged, enthused and impressed by the stories from many of our supporters. On page 16, you’ll meet Simone Boniface, who trekked Mount Kilimanjaro with her family last year to raise funds for the charity. Reaching the peak was no mean feat for someone affected by a muscle-wasting condition, and Simone tells us what it took for her to get there. Matt and Liz Fox are planning a round-the-world adventure on their offroad motorbikes from April this year. It’s a whole new challenge for Liz: not only is she new to motorbiking but she’s also a manifesting carrier of Duchenne muscular dystrophy. Read about their Mud and Knobblies adventure on page 08. Fast becoming one of the most famous football fans in the country, Martin Hywood tells us about the awareness and support that opened up after he shared his story on the Leeds United Football Club. Meet him and his wife, Michelle, on page 14. You’ll also meet some more remarkable supporters, read our latest campaigning successes, and news, research updates, and fundraising events from the last quarter of the year. And for those of you considering some new challenges in 2013, you’ll see a range of exciting running, cycling and challenge events to choose from on page 24. Do let me know your thoughts or comments about the magazine, or any ideas for future editions. We want to bring you the news and stories you want to read. I’d love to hear from you.

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

www.muscular-dystrophy.org

Letters What do you think? We’d love to hear from you and to fill this page with your letters. Send us your good news, your frustrations, your story ideas, as well as any news you’d like to share with our readers. Advocacy Brilliant news – I have been awarded the higher rate of Mobility allowance and the middle rate of the care allowance all backdated to 17/1/12. This makes a HUGE difference to both me and my wife. I can’t thank you enough for your help and support during these very trying few months. Roy Durrant

Muscle group I’d like to congratulate you on putting together the best South Central meeting that I’ve attended by far. It was the first time in 25 years that I’ve heard someone talk about counselling in regards to neuromuscular conditions. I look forward to attending the next meeting! Paul Ronson

A Paralympic greeting ‘Hi to all at the Muscular Dystrophy Campaign’ How are you? Hope you have all had the chance to enjoy a decent break over the festive period. It’s been great up here [in Scotland] to finally have a break after what was an incredible year. I was emailing to thank you and the MD Campaign for all your support over the past 12 months and throughout the Paralympics. Hopefully families and individuals were a little inspired through sport. GB Boccia is starting a talent ID scheme for individuals interested in working towards Rio. Hopefully some more individuals with MD attend.

Looking ahead In the next edition of Target MD due out in April 2013, we will focus on carers and caring. We at the Muscular Dystrophy Campaign understand the valuable, important role that excellent care plays in the lives of individuals and families affected by muscle-wasting conditions, and how important it is in enhancing quality of life. We know that family members are often carers too. If you’d like to write in and tell us about your experience of caring for someone with a neuromuscular condition, or about your own carer, please do get in touch with us. All story suggestions are welcome. And, as always, you’ll also be able to read our latest news, features and updates that keep you, our valued supporters, in the spotlight. People with muscular dystrophy and related neuromuscular conditions, together with their families and carers, are at the heart of everything we do.

Here’s how you can get in touch with us t: 020 7803 4800

Hope you’re all well at the charity, and make great strides forward this coming year. Speak soon

e: targetmd@muscular-dystrophy.org

Stephen McGuire

WRITE TO: the Editor at 61 Southwark Street, London SE1 0HL

(Paralympics GB 2012; Boccia player; see Target MD Issue 4 of 4 2012, p27.)

Talk MD

Good edition, well done! Kissofdarkness

TargetMD issue 4 of 4 2012

I agree with you kiss. I loved the section on air travel. littlestef

feedback

tw: @TargetMD or @RuthWriter

Excellent edition. The usual high standard is maintained. A stunning iPad stand review is included and a wonderful graphic for the ‘Appy Corner’. Taungfox

www.muscular-dystrophy.org 07

TalkMD forum In preparing for this edition of Target MD, I asked our online forum – TalkMD – members to tell us about their travel experiences, and give us some hints and tips. AMGMod Most awesome holiday experience? Sailing with the Jubilee Sailing Trust – only planned on doing it once, but did it four times, kept a detailed [dis]abled sea-person’s twig, which are on my website as blogs, complete with pictures.

miracle77 (Gill) Travel insurance is a nightmare. I have a yet undetermined type of muscular dystrophy and I am either treated as worst-case scenario or declined insurance as I can’t tell them what my condition is. When treated as worst-case, I either get declined or get quotes of £1,200 plus, which is often more than the cost of the trip itself.

littlestef Our local pubs are a joke for access. I live in a town called Pudsey, which is mainly full of older people. Two years ago, a national pub group came here and they’ve been an absolute godsend by putting in a wheelchair ramp and a disabled toilet downstairs. Now surely other pubs could follow their example and make pubs more accessible to the disabled? By making all pubs and shops disabled-friendly, this would increase their profits, wouldn’t it?

Woogy There are many older shops in my town of Aylesbury (Stoke Mandeville), which are not accessible because of steps outside. Some of the retailers are totally accessible; some of them have also opened up second shops in a new retail development, both have big shiny new push buttons outside the entrance doors to automatically let me in and neither has ever worked. Standing, I’m 6’2” and had few problems. Sitting in my chariot, I feel vulnerable and nervous, even in Aylesbury where I live. I never wear *TalMD online forum members’ usernames.

my neck chain out socially unless I’m with friends and never ever answer my mobile unless I’m in a shop or at home, not in between, in case it’s snatched from me. I fell over, when I was able to walk with my stick, at Silverstone, and nobody of the 130,000 people walking by helped me, until two drunks, one himself in a chair, offered to help.

recently has been at the National Maritime Museum in Greenwich, which has good access and you can pre-book a blue badge parking space. Sports venues seem to be good and bad. For anyone who likes rugby, Twickenham Stadium is one of the better that I’ve come across for access and disabled ticketing policy.

kissofdarkness

criptic

Edinburgh sits on two extremes: either really accessible or really inaccessible. Old town is least likely to be inaccessible but there are exceptions. Public transport is amazing – the main bus company is Lothian Buses and virtually all of their buses have ramps and wheelchair spaces. The staff are good too and if there are any malfunctions with the ramp, they’ll actually help.

My favourite places (usually because of good access/toilet/staff, transport etc):

sybylla scarlet My local cinema [at Brighton Marina] is fully wheelchair accessible. All screens have wheelchair spaces at the rear, with a seat alongside for friend/carer.

petered A ‘disabled access’ hotel room can mean nothing more than that there’s a rail somewhere in the bathroom. If you can talk to the people who run the hotel, it’s sometimes possible to find out more, but as many of the hotel chains now use a central booking line, it’s often impossible to get the relevant information. There are very few hotels or other sorts of accommodation in the UK that have rooms with ceiling hoists, which is a real problem for those who need them. The Ceiling Hoist Users Club website (when it works) attempts to list them. Museums and galleries are improving: one of the best days out we’ve had

l accessible canal boat – we did a

week on a narrow boat with family – I could steer from my chair – wonderful l Longleat – you can do the safari and

get up close from the comfort of your car! l Wildfowl and Wetland Trust place in

Lancashire – amazing (beavers and otters too) l steam trains – far more accessible

than normal trains and usually lovely scenery l Holland – very accessible ferry (during

the day), self-catering apartment with level shower and some nice places to go that had great access – wonderful flower gardens and towns just a short drive away from where we stayed so good if you don’t have much stamina or start your day late

l my favourite cities (considering I hate

built-up places): Cardiff and Liverpool. Bad points: l ’Accessible’ places to stay are often

double or triple the price.

On the web Jubilee Sailing Trust: www.jst.org.uk Anne Marie Grove’s blog: www.amgroves.com Trailfinders: www.trailfinders.com Ceiling Hoist Users Club: www.chuc.org.uk Royal Maritime Museum Greenwich: www.rmg.co.uk Tripadvisor: www.tripadvisor.co.uk

Feature

A mud and knobblies

adventure

Matt and Liz Fox have a hobby that involves both leisure and travel. With a bit of fundraising thrown in for good measure.

rmed with off-road motorbikes shod with knobblies (tyres for riding off-road in the dirt), and expecting mud on the dirt roads in the back of beyond, Matt and Liz’s aptly-named Mud and Knobblies adventure begins in April. The two-part adventure will take them across Eurasia and through the Americas. For Matt, it’s an extension of his lifetime passion for biking. For Liz, a manifesting carrier of Duchenne muscular dystrophy and a novice to motorbikes, it’s a challenge of a lifetime. Matt, 30, and Liz, 29, live in Bristol where Matt works as a Bar Manager at the Students’ Union at the University of West England and Liz works in Bath as a hotel receptionist. They met at the University of Plymouth in 2003 and moved to Bristol after finishing their studies.

What made you decide to take on this huge biking challenge, and raise funds for the charity? Matt: Liz and I have been talking about going travelling since we were at university, but never got organised for it. However, over the last couple of years we’ve been to a couple of events by Horizons Unlimited and got inspired with stories of long-distance motorcycle travel. Reading books and watching films made by other independent travellers also influenced us, and we realised we could achieve our dream. We hope by sharing our experiences we can do some good.

Can you tell us about the biking challenge itself: where you will begin and end, how long it will take, and which places you’re looking forward to visiting? Matt: Stage one of our journey is crossing Eurasia and stage two is riding the length of the Americas. We’re currently planning stage one. It will mainly be on dirt roads and we will travel through the European Union and the Balkans towards Turkey, then on to parts of the world that have made headlines for all the wrong reasons: the Caucasus Mountains in Georgia and the areas around the Caspian Sea in Russia. Our next goal is the Pamirs Highway (second highest road in the world) and we get there through Kazakhstan, Uzbekistan

and Tajikistan, ending in Osh in Kyrgyzstan. From there, we’ll head into the vast Mongolian wilderness before heading back into Russia along the Siberian transit roads from the cold war, namely the BAM road and the Trans-Siberian Highway. Liz: The trip will take us about two years, although this depends on several factors, including having enough funds! I personally am most looking forward to seeing Mongolia to experience the vast wilderness, see the wild horses and simply to take in the culture of the people there. It will also be one of the most challenging parts of the trip as there is no tarmac and the roads are known to be quite tough.

What are your hopes and fears about the challenge? Matt: We’re travelling through unstable parts of the world, so it’s important for us to do all we can to keep abreast of current affairs and make decisions based on these events. I personally am looking forward to taking the time out and getting to meet people with totally different life experiences from my own, and I hope it will make me a better person. Liz: As well as making sure we are safe during the trip, I am worried about how I will physically cope with the adventure, but yoga and working on my stamina before we go should help. Like Matt, I’m really looking forward to taking the time out and meeting people from all the different cultures we’ll be encountering.

Can you tell us about the training and preparation you are doing, and the actual experience of riding bikes? Matt: As far as bike riding goes for me, it’s about learning to ride with Liz. Having travelled by motorbike before and riding dirt bikes over the past few years, I feel confident in my own abilities. In terms of preparation, there’s a lot of paperwork to complete for visas and we’re hoping to get a second passport each for security. We’ve been working closely with a local company to prepare the motorcycles; a lot of the parts have to be custom-made as we’re not using travel bikes that have many off-the-shelf parts. We have chosen to travel on motorcycles made by CCM, a small company in Bolton, the main reason being the low weight and relatively low seat (for a dirt

www.muscular-dystrophy.org 09

bike) to make the bike as easy as possible for Liz to handle, with her muscle weakness. I would also like to add the awesome retro styling of the bikes may have swayed our decision a little bit! Liz: Yes, it is a totally new experience for me as I have only been

riding since 2011 and got my full bike licence in August 2012. I’m trying to get more familiar with riding off road as we will be off the beaten track most of the time, but I’m finding it very challenging. Matt and I also recently went for a day’s off-road training with Black Desert Training, which was very helpful.

Favourite experiences so far?

Illustration: Jamie Farrant/istock

Matt: My favourite part of preparing for this adventure is seeing the progress that Liz has been making with her biking skills. Liz: My favourite experiences so far have to be meeting many like-minded individuals, at events like the Horizons Unlimited meets at Ripley and in the Mendips, and the Adventure Travel Film Festival, all of whom have been really positive about our adventure.

Liz, can you tell us a bit about being a manifesting carrier of Duchenne muscular dystrophy, and how that affects you? Being a manifesting carrier of Duchenne muscular dystrophy means that as well as being a carrier of the condition, I have some muscle weakness. Although I look fit and well, I am a little weaker than most people so I am not a very sporty person as I tire quite easily. It can take me a while to get to grips with new things that use muscles I am not used to using. This has become evident on several occasions: l

when we have taken our bikes off road, it takes me a little more time to recover from the muscle aches and pains associated with it than it takes Matt, and when I have gone snowboarding, I’ve been fine when standing up but when I fell over I found it very difficult – and when I was tired, impossible – to get back up without help from others. It was extremely frustrating and dented my pride a little!

When and how did you become involved with the Muscular Dystrophy Campaign? Liz: I first got involved with the charity a few years ago when I was looking for some info on manifesting carriers of Duchenne muscular dystrophy. I got talking to Matt and we thought it would be great to start raising money for the charity. He was planning a motorbike trip to Morocco with some friends and thought that the adventure would be a great way to raise money. Matt: I first started getting involved with the Muscular Dystrophy Campaign a couple of years ago when I raised £1,500 on a motorcycle adventure to Morocco. The aim was get to the Sahara Desert in summer, which we managed to do, however the 50 degree temperatures took its toll on some of the bikes, causing mechanical problems on the way back.

Can you tell us about any fundraising activities you’ve been doing? We’re planning an event before we go as a send-off and to raise some more funds for the Muscular Dystrophy Campaign. We’re also selling off a lot of the stuff we have collected over the years to raise funds for the trip and we’re using eBay to donate 10 percent of all the money we make to the charity.

What would you say to anyone out there who might be thinking about taking on a huge challenge event like this? Matt: Just do it. There is so much advice out there on the Internet for you to chase your dream, the key thing is to listen to the positive and useful advice and ignore the people who tell you you’re being stupid or ‘you don’t want to go there’. Also, tell your stories to encourage others to follow their dreams. Liz: Ignore all the naysayers out there; anything is possible...

On the web Follow Matt and Liz’s story on www.mudandknobblies.co.uk www.horizonsunlimited.com www.zenoverland.com www.blackdeserttraining.com

n Liz’s condition Manifesting carrier of Duchenne muscular dystrophy Duchenne muscular dystrophy is caused Duchenne muscular dystrophy, whose by a fault in the gene that is responsible mother has the faulty gene on one of her for producing dystrophin – a protein X chromosomes; she is called a carrier. In essential for normal muscle function. The about 10 percent of female carriers there dystrophin gene is on the X chromosome. may in fact be some evidence of muscle Females have two X chromosomes (XX) involvement, but the woman may not but males only one (XY); it is the Y be aware of it. A common observation is chromosome that makes them male. A that female carriers may have larger than female may have the faulty dystrophin normal calf muscles (but note that most gene on one X chromosome, but will have women with large calves aren’t carriers). a normal gene on the other chromosome In about five percent of carriers, careful – that produces sufficient dystrophin testing may show mild weakness around for normal muscle function in most the shoulders and hips. In a very small women. A male with the faulty gene on proportion of carriers (fewer than one his one X chromosome cannot produce percent), the weakness may be much dystrophin, and the consequence is that more pronounced, and may lead to he has Duchenne muscular dystrophy. significant walking difficulties and the A typical picture is therefore a boy with need to use a wheelchair. Female carriers

never have a condition as severe as males with Duchenne muscular dystrophy. A very small number of female carriers may develop mild involvement of the heart muscle and all carriers are advised to have a formal cardiac assessment. Any such changes are usually very mild, but it is important to detect them as drug treatment can be helpful. Finally, diagnosing a woman as a carrier is easy if a male family member has already been diagnosed as having Duchenne muscular dystrophy. If not, she is initially likely to be thought to have a form of limb girdle muscular dystrophy and delay in making the correct diagnosis is common.

Dr David Hilton-Jones Consultant Neurologist, Oxford Neuromuscular Centre

Feature

Reaching that peak A team of brave fundraisers climbed to the top of Mount Kilimanjaro last September to raise money for the Muscular Dystrophy Campaign. Simone Boniface, 25, from Braintree in Essex, who has distal myopathy, a form of muscular dystrophy that causes weakness in the calf muscles, trekked with her fiancé Tony Hall, her mum Tracey Whelan and her fiancé Brian Abram. “It was a truly memorable experience that none of us will ever forget,” said Tracey. Simone tells us about her experience of climbing the world’s highest free-standing mountain: “I live in Braintree with Tony, and I work for local letting agents. My condition, distal myopathy, affects my calf muscles and some muscles in my feet causing them to weaken, and this makes it hard for me to stand and to walk long distances. When I was diagnosed with my myopathy, I became aware of the work of the Muscular Dystrophy Campaign. I found the website and the staff really helpful with advice for individuals and family members affected by this condition. I also felt it important to be aware of the latest research being undertaken. I remember seeing the Comic Relief team in 2009 climbing Kilimanjaro and thought that it was something I would like to do; it looked like such an amazing mountain and a real challenge! Tony and I climbed Snowdon in August 2011; I found this pretty challenging but The whole experience of the climb I was still keen to conquer Kili! We started planning the trip at the was truly amazing. It was the hardest beginning of the year and my mum thing I have ever done but also the and Brian said they wanted to join us. most rewarding and exciting! I knew straight away that I wanted to raise money for the Muscular Dystrophy Campaign to support the brilliant work they do. In the run-up to the trek, my mum and I did the British Gas Great London Swim in May, which was a mile swim in the Victoria Docks. My mum and Brian also did the Brentwood half-marathon in March, all to raise funds for the charity. The main training I did was walking and carrying my day-pack. I am also a keen swimmer, so I went swimming more often. The climb was the hardest thing I have ever done but also the most rewarding and exciting! There were six of us in the group in total, with one head guide, two assistant guides, a cook, waiters and about 15 porters, who all worked so hard

“

carrying everything. We slept in a two-man tent every night, which the porters put up every day for us. Most days we were walking for eight to ten hours. It usually took me a couple of hours longer, but the guides were so helpful and encouraging. They often sang to keep us motivated. I kept having to tell myself just to take each day as it comes. At the end of every day I was exhausted but also so happy to be there and to be taking in all the new experiences. I seemed to forget the pain by the end of the day and every morning was like starting a new adventure! The summit night was unforgettable. We woke up at 10pm to have breakfast and to get everything ready to leave at 11pm. I was wearing five layers of clothing but I was still so cold! It was a very steep climb, and it was pitch black so it was hard to see how far we had to go and to see any progress

www.muscular-dystrophy.org 11

we’d made. All I remember was seeing all the other climbers’ headlights in the distance, getting higher and higher. When the sun rose, we saw the most amazing views and I could see Stella Point in the distance. The trail was loose and volcanic so for every step forward it seemed like I was taking two back. The guide helped me by counting 10 steps and then stopping to take a short break and repeating this to get a sense of rhythm.

“I just kept thinking that I had got

this far and I just had to make it! It took all the strength I had both physically and mentally. “

We finally reached Stella Point and I could see Uhuru Peak in the distance. I was holding on to the guide’s backpack to keep the momentum going; my legs were aching so much and it felt like the longest part of the walk as I knew the end was in sight! I could finally see the famous ‘Uhuru Peak’ sign, just a few steps further and we had made it! I felt such a sense of achievement, slight relief and extreme happiness! We had finally made it after six days hard work. I had never been to Africa before. Tanzania was an amazing country, the people were so friendly and it was such a change of culture. I really did love it and would love to go back one day. If I have learnt anything from this experience it’s that if you put your mind to it, you can do pretty much anything you want to do! I try and apply this to a lot of other things in life now.” If you feel inspired by Simone’s story then the Muscular Dystrophy Campaign has many events you could take on; including cycling from Vietnam to Cambodia; or cycling in the footsteps of champions on the London 2012 Olympic Road race route; or running from London to Brighton. To see a full list of challenge, running and cycling events please visit our website or get in touch with Julia on 020 7803 4828 or j.selby@muscular-dystrophy.org

n Simone’s condition Distal myopathy Distal myopathies are a group of conditions predominantly affecting the muscles farthest away from the centre of the body, for example the hands and feet.

Meet the People’s Champion It’s not often you get the chance to meet your all-time favourite actor or athlete. Carl Tilson did just that in late November in London: he met wrestler-turned-actor, The Rock (aka Dwayne Johnson). “It was the most awe-inspiring experience,” said Carl. “He doesn’t wrestle so much anymore but does come back now and again for the fans.” Carl, 25, lives in Manchester and is a devoted football fan and wrestling enthusiast. Carl wrote to The Rock hoping to meet him when he was in London in November for the filming of Fast and Furious 6. The opportunity was too great to miss. “I waited weeks without a response and then one day I got a phone call telling me Dwayne Johnson would like to meet me because he was so inspired by my achievements,” Carl said. On Tuesday 20 November, Carl and his friend and carer, David Jones, set off on the train to London. David has a young son, Carson, who, like Carl, has Duchenne muscular dystrophy. When they arrived at the studio, they were escorted to the building where The Rock was ‘hiding out’ and were introduced. They had about 20 minutes with him and talked about his wrestling days, Carl’s charity work and his condition. “The Rock told me why they call him the People’s Champion. He told me Muhammad Ali was the original People’s Champion and he passed the title on to The Rock. He has now passed it on to me, for inspiring so many with the work I do. “I felt very honoured to be labelled The People’s Champion by the man himself. Dwayne is a true gentleman and genuinely cares about others. His compassion and dedication are unmatched,” said Carl. “Meeting Dwayne ‘The Rock’ Johnson is a dream for so many and it feels amazing to have made that dream come true. It was an extraordinary experience and a once-ina-lifetime opportunity. I do feel that anything is n Carl’s condition possible but you have to believe and Duchenne muscular dystrophy follow your dreams.” Duchenne muscular dystrophy is a serious Carl asked him if he preferred the muscle-wasting condition that causes name Dwayne or The Rock? muscles to weaken and waste over time, “He prefers The Rock because it’s leading to increasingly severe disability. much cooler than Dwayne! We are committed to accelerating the “After The Rock left, I was invited pace in development of effective into his trailer to watch a few of the actors doing some filming on a television treatments for Duchenne muscular dystrophy and we have established the screen. I also met Vin Diesel and other Duchenne Research Breakthrough Fund members of the film crew.” with an initial £1.6 million investment “This new Fast and Furious film, target. For more information, please get in filmed in the UK, comes out next touch with Gary Kernahan on 0141 951 2280. summer, so check it out!”

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Feature 13

“Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything.“ PLATO

Play great music with the

Paraorchestra A chance encounter led Ziad Sinno, who was born with congenital cataracts, to join the Paraorchestra in May last year. Born and raised in Lebanon, with music and rhythm in his blood, Ziad came to the UK in 1985, originally to train as a physiotherapist. Things changed for him when he lost his sight completely in 1990.

Photo: Getty Images. Illustration: -M-I-S-H-A-/istock.

bout a year ago, oud* player Ziad happened upon another visually impaired musician, and ended up joining the Islington-based orchestra, Innervision. This led to an invitation in May last year to join the Paraorchestra, and the opportunity to play at the Paralympics at the 2012 London Games. “My tongue fails to express what it was like to play at the Paralympics. With 90,000 people watching in the stadium, not to mention the millions of people all over the world watching on television, it is beyond any words to describe what it was like! “Charles Hazlewood (our conductor) is very encouraging and open to new ideas. Having worked in different orchestras before, I can see that he is not a stereotypical maestro – he tries new ideas, we all have ideas that we discuss and then we create a masterpiece! “Music is a universal language. There is no race, no religion, no language, no creed, no ability barrier in our orchestra. We are making music,” he said. Ziad said he would highly recommend joining the Paraorchestra, which is currently recruiting new members. Founded by British conductor Charles Hazlewood, the British Paraorchestra is pioneering a global movement to recognise and showcase disabled musicians with extraordinary abilities. Its mission is to end the limitations placed on them, not by their physical ability but by lack of opportunity. Charles, who conducts orchestras around the world, said he could count on the fingers of one hand the number of musicians with a disability he has encountered anywhere. “There is no platform for musicians with disability, very little in the way of funding and therefore access to

* The oud is a pear-shaped stringed instrument commonly used in Greek, Arabic, Byzantine, North African, Somali and Middle Eastern music. Construction of the oud is similar to that of the lute, descending from a common ancestor via diverging paths. The oud is readily distinguished by its lack of frets and smaller neck. It is considered an ancestor of the guitar.

the often-necessary technologies: it is virtually impossible for anyone from this community to make a living as a professional musician,” said Charles. “Paraorchestra is therefore a vitally needed platform, and source of work. If more paraorchestras emerge, more and more musicians will develop, will earn a living from their talent, and will of course end up in the great musical institutions of the world. Integration is the long game.” So, the British Paraorchestra would like to hear from you if you are, over 16 years and living in the UK, a prolific/ highly able musician (or have been in their recent past), committed to working as part of an ensemble. If you’re interested, the British Paraorchestra would love to hear from you. Email them a few lines about why you’re passionate about joining the British Paraorchestra, along with a short video/ YouTube clip of a recent audition/playing your instrument to info@paraorchestra. com. All instruments are welcome. Do have a look at their website and check out their recent release True Colours www.paraorchestra.com

Feature

Marching on together Fast becoming one of the country’s most famous football fans, Aylesbury resident Martin Hywood is using social media and a burgeoning football fanzine to raise awareness about muscular dystrophy.

dedicated Leeds United fan, Martin wrote a blog post last year on the Leeds United fanzine – rightinthegarykellys.com (RITGK) – that got his fellow supporters talking. Not only did he write with passion and fervour about his beloved football team, but he also wrote about being affected by limb girdle muscular dystrophy and the challenges that this presents for him when he goes to matches. The blog post attracted the positive attention of some 20,000 Leeds United fans right around the world, most of whom had never heard of Martin’s condition. It also piqued the interest of the club’s Chairman and his wife, who both called Martin to find out more. The article also appeared in a

“Twitter offered me a new way of speaking to fellow football fans. I met a guy who was also new to Twitter and this led to my writing an article on the RITGK fanzine from the perspective of a disabled football fan. “My expectation was that three people might retweet it, or it might get five comments or someone might ask me a question. And for me that was enough; that would mean that five more people would know about muscular dystrophy. The blog post got so many hits and I am still getting asked questions about it. It’s also put some football fans with muscular dystrophy in touch with me too. Two weeks ago a Leeds United fan asked me if he could do anything for the charity,” said Martin.

“ When I got diagnosed with limb girdle muscular dystrophy, I realised why I was so rubbish at football as a child! My brothers always put me in goals because I was so bad.“

match day programme, potentially reaching another 20,000 people, and garnered Martin and Michelle an invitation to a VIP day with the club’s Chairman. Martin said the initial writing of the article took about ten minutes. “The hardest part was letting other people read it, especially my wife, Michelle. Through the website, and a network of family and friends, the article got shared. I shared it on Twitter and thousands of people got to read the article,” Martin said. Martin joined Twitter early last year, mainly to find out about football as he wasn’t able to get to the matches as often as he’d like to because of his disability.

“The interest that the blog post sparked has been mad! Being included in the Leeds United match day programme was really strange for Michelleand me, especially being aware that people around us were reading it on the day,” Martin said. Matthew McKeith, editor of the RITGK fanzine, said the reaction to Martin’s article was quite overwhelming. “Seeing the reaction through our comments section, social media and fans’ forums, I know it had instantly grabbed people’s attention. It really demonstrated how people can take the simple things in life for granted,” said Matthew. “Martin’s article, for me, has to be

the highlight article of 2012 though. It wasn’t just his story but getting to know him on a personal level and experiencing with him the amazing journey he went through on the back of this. I know how proud Martin was to have the article published in the first match day programme of this season, and I’m glad I and the site’s team could help him achieve getting the awareness of muscular dystrophy out there to the Leeds United fanbase and beyond,” said Matthew. Martin is the middle child of five children. He grew up in the 1970s when there were strikes, no work and no money and tells of how his parents sacrificed greatly for the family. After school, he went to Aylesbury College to study to become a mechanic. He had an accident in the workshop, and he dislocated his right knee and it wouldn’t heal. At the same time, his older brother, Simon, was having problems with his lower back; they both saw their own GPs with unrelated problems and it was just a matter of time before both of them were diagnosed with a form of muscular dystrophy, and then specifically with limb girdle muscular dystrophy. Martin was 23 and knew nothing about the condition at all. “When I got diagnosed with limb girdle muscular dystrophy, I realised why I was so rubbish at football as a child! My brothers always put me in goals because I was so bad,” Martin said. “I remember choosing to support Leeds United when I was a boy. My dad always said that if you’re going to be a fan, you have to be a fan with all your heart; you have to show dedication and

www.muscular-dystrophy.org 15

Travel insurance passion and commit yourself to it fully. It’s always been a huge thing in my family, and it’s the same for Michelle; her enthusiasm for football gives me the encouragement to get up and go to a match,” Martin said.

“Anything that I do going forward is not about helping me. Our aim is to bring the public’s attention to muscular dystrophy, particularly Duchenne muscular dystrophy. I know it can take ten years from clinical trials to the final

Michelle said she and Martin had only just started their lives together when Martin got diagnosed. “We suddenly had this great big barrier in our lives and I didn’t know why. For us there was so much to take on such young shoulders. We cope with every day as it comes; some days are good, some days are bad. I would take ten bad days for one good day,” said Michelle. “For me, having this diagnosis has not been all doom and gloom. The opportunities are there, and I find that enthusiasm is my greatest asset.” Martin, who works as an administrator for a pharmaceutical company, sees a specialist once every six months. Aware that he needs to have a happy medium between keeping active and not burning himself out, Martin finds that going for long walks helps him. He adds that knowing his prognosis also keeps him active.

outcome. Everyone needs to raise as much awareness about muscular dystrophy as possible to make sure things progress.” “Having limb girdle muscular dystrophy is a challenge; I have got too much in my life to make this the most important thing. Nothing should get in your way if you are enthusiastic about it, like I am about Leeds United,” Martin said. “We go to as many home games as we possibly can. I might wake up on a Saturday and my legs might say ‘no’. It’s a long drive but we go to about one match in three or four. “Sometimes I cannot afford not to go; I need this feel-good factor. The euphoria and the recharge it gives are inexplicable,” Martin said.

“For me, having this diagnosis has not been all doom and gloom. The opportunities are there, and I find that enthusiasm is my greatest asset.“

On the web Martin’s blog post: bit.ly/RITGKMartin1

n Martin’s condition Limb girdle muscular dystrophy The limb girdle group of muscular dystrophies is so called because generally they cause weakness in the shoulder and pelvic girdle, for example the big muscles around the top (proximal) part of arms and legs (hip, thigh and shoulder muscles). Usually weakness of the legs is noticed before that of the arms and usually the muscle of the face are unaffected.

Travel insurance is essential when going abroad and it is often worth shopping around to make sure you get best value for money. Make sure your travel insurance covers cancellations and loss or damage of property, including any equipment. (Equipment can sometimes be covered through your home insurance.) When you travel, check that the travel insurance covers medical treatment and does not exclude “a pre-existing medical condition”. The Equality Act 2010 makes it illegal for insurance companies to charge a disabled person more for an insurance policy without evidence that proves that the disabled person is a greater risk than a non-disabled person. If you are travelling within the European Economic Area and Switzerland, you need to get a European Health Insurance Card (EHIC). The Department of Health, working with the NHS Prescription Pricing Authority (PPA), provides the EHIC free of charge. (This card replaces the older E111, which is no longer valid.) You can apply for a card over the phone on 0845 605 0707, online on www.ehic.org.uk or get an application form from the Post Office. The Muscular Dystrophy Campaign cannot endorse any particular insurance company; you need to make sure that you are happy with the company you choose. If you would like a copy of the charity’s holiday and insurance factsheet, do get in touch with our information service on 0800 652 6352 or info@muscular-dystrophy.org

On the web www.the-insurance-surgery.co.uk The insurance surgery website provides information about travel insurance for disabled people or people with a pre-existing medical condition.

Feature

Golfing, biking, swimming and the Kent coast Odette Lattimer, 33, works full-time for Ashford Clinical Commissioning Group (CCG) as a Prescribing Support Technician across 16 GP practices. Born and raised in Kent, she lives with her partner and two dogs on the south east coast of Kent. In Odette’s Twitter profile, she describes herself as ‘golfer off +1, rules nerd and past lady captain. Enjoy a swim, love my bike. Need new muscles but battle on regardless.’

ith an undiagnosed neuromuscular condition, Odette leads an active, sporty life and holds down a busy full-time job. TargetMD caught up with her and asked how it all began. “My love for golf started purely by accident when I was 16, after a foot injury stopped me playing tennis, which was my passion. I played for the County as a junior and an intermediate and was lucky enough to work as a junior assistant professional golfer for two years. In 2010, when I was 31, I become Lady Captain at Hythe Imperial Golf Club, which is a small links course down on the coast where I started playing my golf. I managed to get down to +2 during my captaincy, which lasts from January to January (You ‘Drive In’ your captaincy on New Year’s Day – for me, several brandy shots helped me overcome my nerves!) During my captaincy I still worked full-time for the NHS and used my holiday to play in matches and organise the weekly ladies’ events at the club. Playing currently off +1 takes a lot of hard work and practice; I used to play two or three times a week and practise for a couple of hours on a Sunday morning. I enjoy the dedication and focus that golf needs although unfortunately at the moment I am not playing, this year I was lucky enough to be asked to attend an EWGA rules seminar after scoring high on a rules exam. I am a rules nerd. I have a few favourite courses, and I am lucky to be surrounded by amazing links courses on the Kent coast. I enjoy playing Royal Cinque Ports in Deal and you cannot beat playing Littlestone – a championship links course just down the road on the Marsh. A local course I am seriously considering joining this year has to be Walmer & Kingsdown as I won my first match here as Lady Captain. The views are absolutely breathtaking. Before becoming a lot more ill in The views are absolutely breathtaking. the summer of 2010, I could be found Dream golf course for me would have in the gym every morning running to be Augusta National, who would miles on the treadmill, lifting weights not want to play round there daily? and rowing miles on the rowing machine. Unfortunately I have had to slow things down dramatically as my body can no longer cope with such physical demands. I have recently uncovered a love for being out and about on my bike, and am lucky enough to have access to various canal paths, cycle paths and the seafront. I load my bike up with enough hydration to sink a battle ship and have a gentle cycle. Every morning at 6.30am I leave my house and head for the swimming pool. I have found swimming to be my saviour especially as I have struggled to play golf as the muscles in my arms and shoulders struggle with the repetitive swing. Swimming is my

“

release and something that I really have come to enjoy; I can completely relax and just clear my mind of everything and focus on the water. On the mornings I really struggle with my legs and muscle exhaustion, I spend some time in the hot tub and sauna being asked about golf or golf rules by the other gym members! During my childhood and teenage years I suffered with what I was told were growing pains but to me felt like my muscles were bursting. The pain was deep in my proximal muscles and I struggled with exhaustion; this became worse during my GCSE PE exams when I became disorientated, unable to weight-bear on my legs and had a head-to-toe rash. This lasted five days. During college, the relapses occurred more frequently which led to my having orthotics fitted for my feet to help my legs.

www.muscular-dystrophy.org 17

Travel hints and tips Some more tried-and-tested travel and leisure tips from our TalkMD members. In 2004, I was diagnosed as diabetic and was put on to medication which then hindered anything to be done with regard to my muscle issues. I struggled on, having symptoms and relapses and in 2005 started suffering with severe blackouts. In 2008 after a relapse I was fitted with digital hearing aids in both ears. In 2010, during my lady captaincy, I suffered a severe relapse which took me nine weeks to recover from. The plus side to this relapse meant finally something could be done after a CK (creatine kinase) blood test was done and the level was elevated. I was extremely fortunate to have a referral to a fantastic rheumatologist Dr Anne Scott-Russell who then referred

me on to Dr Fiona Norwood at Kings, who now has the task of unravelling what is happening. Last year I suffered the worst relapse to date and was unable to walk. During a relapse my CK elevates, causing the body to struggle with even mundane things. The pain in all muscles and joints is so intense that I even struggle to lay still or relax in bed. Increasing night sweats, dry mouth and dehydration have to be the worst parts for me. In between the relapses, my muscles remain sore, particularly my thighs and arms, and I have lost a great deal of muscle tone.

Since the summer of 2010 my life has changed a great deal and I can no longer participate in sport to the level that I was. I realise I am a great deal luckier than some, and am extremely grateful for the help that I receive from both my GP Dr Ola and Dr Norwood.

“On the mornings I really struggle with my legs and muscle exhaustion, I spend some time in the hot tub and sauna being asked about golf or golf rules by the other gym members! “

I have grown up within a fairly competitive sporty family, attended Karate instead of brownies as a young girl and excelled at sport throughout my school life. Upon its release, I read Victoria Pendleton’s autobiography and the beginning made me cry as her relationship with sport and her father mirrors mine. Sport will always mean a great deal to me and I hope I get the chance to continue it in some form. Spare time is filled mainly with walking my dogs, and reading. I enjoy travelling and am lucky enough to have a camper so I get to visit some corners of Europe and the UK that you wouldn’t normally get to see by air.” We asked Odette what she would say, as a golfer, to encourage people taking part in the Muscular Dystrophy Campaign’s Four Course Classic golf marathon on Friday 21 June (see page 25). “Enjoy it! Enjoy every moment of it and the company you have during the four rounds. Relax and remember to keep hydrated. Whatever the outcome of each of your rounds, remember that the money you are raising helps thousands of people just like me, helping to provide funds for research for cures as well as providing free care and support to families on a daily basis.”

n Wherever you are travelling, plan, plan,

plan. And plan some more. Research addresses, print off maps, wing off emails to places, get yourself ‘informed’. If it is a major city, contact the tourist office [Google them] and email them with your needs.

n Chester Zoo: I went yesterday and I can

honestly say I can’t fault the place; all the paths are quite flat and wheelchair friendly; the café and toilets too. All the animal keeps are glassfronted so you can see everything very easily.

n Trip Advisor is good for looking up and

submitting info on access for places to stay and visit. Give feedback to venues via this website or Twitter. n Google and web search every place to death

and prior to going, ask for pictures of the toilets! n Take everything including the kitchen sink if it

will fit in your mode of transport! n Go with the right people. n Marvel at the greatness of your smart phone for looking up places on the go and using the travel Apps for places.

criptic Things that I never go on holiday without: n plank of wood and raised blocks (to make foot stools for support on high toilets and places where foot plates can’t be used, raising tables) n assorted blankets and pillows to stuff around

me and keep me upright n mattress topper – pressure relief needs to continue away from home n grip/non-slip mat – for public loos and

apartments with slippery bathroom floors n large foam blocks – wedge them at side of loo for support to rest/lean arms on (also props me up in bed) n manual chair – used in the shower and for emergencies if powerchair fails n of course meds and BIPAP stuff, straws n a hubby who is fully charged and ready to get a full body work out trying to lift and move me in strange places for a week/end!

Feature

Nine-year-old John Dickson from Chipping Norton is passionate about cycling. He has an electric mountain bike and loves to take his family on six-mile bike rides. Mum and Dad, Angela and Paul, and big sister, Hannah, battle to keep up.

Like riding a bike T

he muscles in John’s legs are weakening and he struggles to keep up with his friends. He was diagnosed with the severe musclewasting condition, Duchenne muscular dystrophy, when he was just a year old. Once a week he goes to Great Ormond Street Hospital in London to take part in clinical trials for a treatment for his condition. The trial can be tiring and uncomfortable for John, but he and his family are committed to helping find a treatment that could benefit hundreds of children. When John was two years old, he wanted to play with ride-on toys but he found it difficult to propel himself. The family found a company called Like-A-Bike who produced a beautifully made aluminium balance bike called the Jumper. It had no pedals, so John could balance like a cyclist but without the need to power himself by pedalling. He never needed stabilisers as his feet were always there when needed.

“ John thrived on this and, of course,

we knew that when the time came to move to a bigger bike he would already have the confidence to keep upright “ When the family moved house in 2008, John needed a bigger bike. His mum and dad were a little nervous about the possibility of his falling, so they explored the idea of a trike. “The trikes that looked good would have been difficult for John to pedal. The more specialist trikes, as recommended by various physios and OTs looked like disability aids and that would have done

nothing to inspire John’s confidence,” said Paul, who went on to say that they have found this with almost all disability aids. “The wellbeing of disabled people isn’t simply about functionality; if an mp3 player can look trendy, why not a wheelchair or hoist, for example?” They found the Pashley Robin, which is made in the UK and, with its low gear, is suited to children with weaker limbs. “The bike looks trendy and John’s friends were always desperate to have a go!” said Paul. A couple of years ago, when John’s friends were getting mountain bikes, he wanted to get something similar. As John wouldn’t be able to propel himself unaided, his parents considered what sort of bike would give John the best chance. The bike needed to be lightweight, be powered electrically and easily controlled by John, have brakes that with John’s strength could provide enough stopping power and look good! They contacted Isla Bikes, whose bikes – designed specifically for children – have soft touch brakes and aluminium frames. They bought a Beinn (large) and set about looking for someone who could adapt it electrically. “We found a small company near Marlborough who provided electric kits to well-known adult bikes, and they adapted John’s bike. “Please note: I am aware that children aren’t supposed to use an electrically-operated bike on the road, though I’m happy to have a chat with any policeman who ever wanted to talk to me about it!” Paul said. It was important to choose a lightweight bike as the kit (a hub motor in the middle of the front wheel and a lithium battery within the triangular frame) adds a few kilograms. The battery lasts for about six to eight miles and takes 90 minutes to recharge fully. “The bike can travel at around

15mph and accelerates much faster than a cyclist could unaided, seriously! Put simply, his friends struggle to keep up with him! Amazingly, although John spends almost all of his free time on it, he has fallen off his bike on just a few occasions and probably far less than any other child. Without any doubt, he is far more likely to fall when on his feet than on his bike,” said Paul. For a child of seven to spend the next two years almost exclusively playing out on his bike was something we never dreamt possible” said Paul. Between Angela and Paul, they have run four marathons, organised a sponsored10k run across the Cotswolds for 250 people and even persuaded five courageous friends to take on a fundraising skydive for the charity. John’s family is also currently fundraising for a powered wheelchair for John, so he can get an all-terrain chair that won’t limit where he can go with his friends, particularly as his home is surrounded by fields and woods. “The options are pitifully few and we can’t be the first parents to want capable all-terrain chairs like this for our child. We’d like to get John a chair that is every bit as inspirational as the bikes that have changed his life for the better,” said Paul.

On the web If you’d like to find out more about bike adaptions, do get in touch with Paul at paul@pauldickson.co.uk www.facebook.com/gojohnnygofundraising Isla Bikes: www.islabikes.com www.gmelectrobikes.co.uk

Your independence, our motivation

The Mobility Roadshow 30th anniversary event 27th, 28th and 29th June 2013 Telford International Centre Free admission & parking

test-drives • conversions • adaptations • scooters wheelchairs • sport • cycling • innovation

www.mobilityroadshow.co.uk 0845 241 0390

news

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

Moves to improve Northern Ireland’s access to specialist care At a recent meeting of the Northern Ireland Rare Disease Partnership (NIRDP), muscular dystrophy was confirmed as the pilot ‘patient pathway / journey’ concept to be developed in Northern Ireland. The project has a dual focus: firstly, on improving the process for early investigations and diagnostics, led by Dr Fiona Stewart, and secondly, on care, management and life needs (including professional education, clinical and social aspects) for families. Drs AJ McKnight and Janet Bailie will lead the second component of this process for the NIRDP. This development is timely, given the ongoing work of the All Party Group on Muscular Dystrophy in the Northern Ireland Assembly and the launch of the Group’s McCollum Report last July that described specific recommendations for service improvements in Northern Ireland. There has also recently been unanimous cross-party support for improved services in Northern Ireland, which Health Minister, Edwin Poots MLA, acknowledged. A new care advisor is now in post. Dr AJ McKnight, Chair of the Muscular Dystrophy Campaign’s Northern Ireland Council, said she was pleased the NIRDP had chosen muscular dystrophy for the pathway. ”The pathway plan is moving forward with strong enthusiasm and support from the Public Health Agency, Health and Social Care Board, allied health professionals, local consultants and many others. ”These are promising developments that we hope will help shape healthcare services for children, young people and adults with muscular dystrophy and related neuromuscular conditions,” AJ said. The Muscular Dystrophy Campaign provides all the organisational support for the All Party Group on Muscular Dystrophy. For more information on our Northern Ireland activity or on the NIRDP project, please contact Dr AJ McKnight at a.mcknight@muscular-dystrophy.org or patientpathways@nirdp.org.uk

On the web www.nirdp.org.uk www.muscular-dystrophy.org/assets/0003/5328/McCollum Report.pdf Contact the NIRDP: patientpathways@nirdp.org.uk

Mitochondrial myopathy consultation The Human Fertilisation and Embryology Authority (HFEA) launched a consultation in September last year on a new in vitro fertilisation (IVF) technique that has the potential to stop mitochondrial myopathy being passed from mother to child. The consultation closed in early December. It is expected that the result of the consultation will be made known in April. The technique, developed by Muscular Dystrophy Campaign-funded researchers led by Professor Doug Turnbull, uses IVF to fertilise an affected mother’s egg – containing ‘unhealthy’ mitochondria – with the father’s sperm. The nucleus of the fertilised egg is then collected and transplanted into a donor egg containing healthy mitochondria, but with its own nucleus removed. A change to the law is required before the technique can enter clinical trial and the consultation aims to bring together members of the public, policy makers and scientists to discuss the social and ethical issues raised by the new technique. At the close of the consultation, the Muscular Dystrophy Campaign’s Director of Research, Dr Marita Pohlschmidt, said the charity was glad to have been part of the consultation, putting the science behind pronuclear transfer under the microscope and presenting the harsh realities of life with mitochondrial disease. “For the patients and their families affected by mitochondrial disease, we have heard that their key concern about this IVF technique is safety. Scientists have tested the technique in the laboratory and are now working to optimise and refine each stage of the process. We know that there is both the commitment and funding available to ensure this happens. “We, as a charity, are optimistic that the public will share this view. There is still work to be done before it can move towards clinical trials. However, if the results are the clinical trials are successful, we may have a treatment offering invaluable life choices to women living with a cruel condition.”

www.muscular-dystrophy.org 21

Special Recognition Awards 2012 A few recipients of the 2012 President’s Awards were unable to receive their Special Recognition Awards at the National Conference last year. The Nye family, Witham TJ and Baz Nye and their five-year-old twins, Georgie and Lili (pictured right), alongside family and friends, have fundraised tirelessly for the charity over the past 12 months. They have raised a staggering £14,000 to help the charity fund promising research projects into treatments for Duchenne muscular dystrophy, the condition their son, Georgie, was diagnosed with in December 2011. The family has been getting the whole community involved with their fundraising and organised a range of fundraising activities including an all-day busk, a cycle ‘ride for my boy’ led by Baz, and a fundraising night at a local hotel.

Next Plc Over the past three years, Next Plc has

made a terrific contribution to the work of the Muscular Dystrophy Campaign, supporting a series of projects and investing more than £50,000 towards the charity’s work.

Cory Thompson, Exeter Inspired by his cousin, Bradley, who has Duchenne muscular dystrophy, Cory displayed a huge amount of confidence – and no small degree of showmanship – by standing up in front of his entire school to nominate the Muscular Dystrophy Campaign to be its Charity of the Year. He then led the charge on fundraising efforts that raised more than £7,000.

Forest of Dean Branch In its 20-year history, the Forest of Dean Branch has raised a staggering £200,000 for the Muscular Dystrophy

Campaign. The branch organises one of the charity’s most successful Christmas events, last year celebrating their 10th Spirit of Christmas concert.

Jeanette George, Cardiff Jeannette has been a tenacious ambassador for the Muscular Dystrophy Campaign, recently becoming an ambassador for our Duchenne Research Breakthrough Fund. Jeanette hopes that by sharing her story she can help to improve the lives of all people living with Duchenne muscular dystrophy by funding groundbreaking research.

Report exposes realities of life for young disabled people Trailblazers joined forces in late November with Ministers, MPs and business leaders to launch the All Party Parliamentary Group (APPG) for Young Disabled People’s Inquiry report Removing barriers, promoting independence. The APPG report highlights the barriers to completing higher education, establishing a career, leaving home, travelling and socialising and concludes that some challenges could be removed immediately but others, related to infrastructure and attitudes, need to be addressed without delay. Trailblazers campaigners were supported by APPG Chairman Paul Maynard MP, David Blunkett MP and Minister for Children and Families, Edward Timpson MP. Channel 4 News reporter and Muscular Dystrophy Campaign Ambassador Katie Razzall also showed her support for the recommendations and told the Group that the report’s findings were a sadly familiar story. “I was delighted to work with the Trailblazers on the report and to have the opportunity to highlight issues previously overlooked by mainstream media,” Katie said. Bobby Ancil, Trailblazers Project Manager said decision-makers, businesses and institutions needed to move from a ‘ticking the box’ mindset to one of accessibility if the quality of life and opportunity for young disabled people in the UK were really to improve.

“Real accessibility is not putting in a lift or presenting a 15-minute disability awareness course. It’s seeing people as students, customers and employees and thinking through – and asking them – how they can be part of your business or use your service just like everybody else,” Bobby said. Paul Maynard, Chairman of the APPG for Young Disabled People, said some extremely influential people had heard from young disabled people over the past year. “This Inquiry has seen young disabled people come face to face with MPs, Ministers and senior business leaders, to share not only the issues they face but also, importantly, how they

“ This Inquiry has seen young disabled people come face

to face with MPs, Ministers and senior business leaders... “ believe these could be resolved. We have heard some potentially tide-turning promises and seen some genuine commitment towards change. However, good intentions alone are not enough. We must act now to ensure that for the next generation, entering higher education, establishing a career, setting up a home or enjoying the same social activities as non-disabled peers need no longer be an ongoing battle,” he said.

On the web Find out more about the individual reports that make up the APPG Inquiry report: www.muscular-dystrophy.org/ trailblazers Channel 4 News coverage of the event: www.channel4.com/

news

Calls for urgent specialist care improvements in Northern Ireland Northern Ireland Executive Health Minister, Edwin Poots MLA, has responded to calls by MLAs to improve specialised neuromuscular services. At a debate in the Northern Ireland Assembly in November last year, Edwin Poots outlined how the Northern Ireland Executive plans to respond to the McCollum report, published in July last year by the All Party Group on Muscular Dystrophy in the Northern Ireland Assembly, which revealed a stark shortfall in care for children and adults with devastating muscle-wasting conditions in Northern Ireland and costing that country’s Health and Social Care millions of pounds in emergency treatment. The report also revealed that, based on NHS ...a stark shortfall in care for children data, as much as 40 percent of the £2.27m and adults with devastating musclespent on emergency hospital treatment wasting conditions in Northern for people with muscular dystrophy and related neuromuscular conditions annually could be saved with an investment of just £320,700 in specialist care, which equates to £160 per patient. Patients and campaigners, led by the Muscular Dystrophy Campaign, which provides the organisational support for the All Party Group, hope that the Minister will make a commitment to tackling neuromuscular care, and agree to nominate a Stormont ‘lead’ to take the reins on channelling investment, creating new NHS posts and developing a specialist centre. For more information about the debate and the campaign to improve neuromuscular services in Northern Ireland, please get in touch with us at 020 7803 4839 or j.kingsley@muscular-dystrophy.org

Tell Trailblazers about access to sport After the excitement of the London 2012 Games, and the news that some Trailblazers had been inspired to take up a new sport, the young campaigning network held an event at City Hall in London in September 2012 to celebrate accessible sport. The Trailblazers are now keen to probe further to see what is working and what needs to improve. By sharing your suggestions and experiences, we hope that gyms, sports centres, and sports clubs will consider the benefits of inclusive sport for young disabled people.

You can contribute and get involved in a number of ways: simply fill out a survey, write a blog or investigate what is on offer locally. In this way, you can help the Trailblazers to raise awareness, suggest improvements and make changes happen.

If you’d like to find out more about this survey, or you’d like to get involved with the network of young campaigners, do get in touch with the Trailblazers at trailblazers@muscular-dystrophy.org

MBE for Ollie rounds off a year to remember

Landmark decision for social care in Scotland New legislation has been passed in Scotland that requires local authorities to offer disabled people more options about how their social care is organised. The Self-directed Support Bill passed at the end of last year in the Scottish Parliament means that people with neuromuscular conditions will now enjoy greater independence and control over their own care. Local authorities will now have to offer people needing care the option of direct cash payments to arrange their own private care or to have it allocated to a provider of their choice, as an alternative to the current system of council-run social care. Local Authorities will also be required by law to provide information and guidance about self-directed support. The various challenges relating to this Bill were discussed at the Cross Party Group on Muscular Dystrophy meeting in October, which highlighted the importance of the review process in ensuring that patients’ needs are properly met, the role and work of personal assistants, the challenges of securing, and different ways of purchasing, equipment as well as raising concerns over the lack of clarity in the funding process. The Muscular Dystrophy Campaign welcomes the new Self-directed Support Bill and urges the Scottish Government to consider these key issues to ensure the Bill is successful in achieving its aim of improving the quality of support provided for disabled people. If you’d like to find out more about the Self-directed Support Bill, do get in touch with us on 020 7803 2865 or r.johnson@muscular-dystrophy.org

Ollie Hynd was awarded an MBE in the Queens New Years honours list for services to swimming, describing this as the ‘perfect’ way to round off a superb year. Ollie, who is 18 and from Kirkby in Ashfield, began the year as European Champion on his international debut in Berlin. A clean sweep of gold, silver and bronze medals at the Paralympics made Ollie the most successful swimmer on the Paralympics GB team at London 2012. Ollie is an Ambassador for Muscular Dystrophy Campaign. We featured Ollie’s Paralympic preparations and successes in Target MD issue 3 of 4 2012 (bit.ly/targetoh3), and 4 of 4 2012 (bit.ly/ targetoh4) respectively.

www.muscular-dystrophy.org 23

Update on

advocacy

A new home for Byansi

In partnership with the prestigious law firm, Hogan Lovells, who provide pro bono legal assistance for patients and families, the charity has dealt with around 120 cases during the past year, where people have received unfair decisions. By writing on behalf of the person concerned, engaging and briefing local MPs and gaining media coverage and legal representation, the Muscular Dystrophy Campaign has successfully overturned many cases, securing more than £832,822 worth of care, support and equipment previously denied.

Byansi is six years old and has Duchenne muscular dystrophy. He lived with his mother and two brothers in a third floor flat with no lift access. He was unable to climb stairs and so needed to be carried up the three flights of stairs. The family had been classified as homeless and had been waiting for suitable accommodation for nearly a year. Byansi’s mother contacted the advocacy service in early November; we drafted a letter to the local council outlining the family’s desperate need for re-housing. Shortly after, the council offered them temporary accommodation. The family were extremely happy to know they would have a roof over their heads for Christmas!

Supporters fight for vital adaptations

Increased care for Josh

For people with limited mobility, it is often inevitable that they’ll need to have suitable adaptations made to their homes. In addition to practical needs, the adaptations are often necessary to protect their health and safety. For Stephen and Anola Hiles, a simple request for bathroom adaptations turned into a bitter fight that lasted 12 months.

Josh and his family have been long-term supporters of the Muscular Dystrophy Campaign and regularly attend the Southampton Muscle Group. Southampton is one of the first local authorities to provide personal budgets and, as expected, there have been a few teething issues. In Josh’s case this had led to a shortfall in care hours. We made contact with Southampton Council on his behalf, and raised these concerns. They were very helpful and agreed to discuss Josh’s case at their next panel meeting: we soon received an email stating that Josh’s care package had been revised and that he will now be receiving a care package of £119 per week. This is an ongoing increase of £3,500 a year.

The Muscular Dystrophy Campaign’s advocacy service has made a real difference to many people’s lives. People affected by muscle-wasting conditions have struggled to get the assistance they require to live a full and independent life, and have therefore approached our advocacy service to help them fight for the services, benefits and equipment they are entitled to.

nola and Stephen have fundraised and campaigned for the charity in Wales for many years. Anola has a rare muscle-wasting condition – a type of congenital myopathy called central core disease – which severely affects her muscles and causes cramps. Following an occupational therapy assessment, it was noted that Anola required assistance bathing and that the family bathroom would need to be adapted to meet her needs. The Disabled Adaptations Team at Caerphilly County Borough Council initially put forward a proposal to extend the bathroom so that Anola could move around safely. This was quickly overridden by a technical officer, who was of the opinion that the adaptations could be made in the existing space.

Stephen, who is an architect and works in the adaptations business, realised that this wouldn’t meet Anola’s needs. He discussed this with the officer but was rebuffed. For months, Stephen tried to work with the council but to no avail. After hearing about the Muscular Dystrophy Campaign’s advocacy service at a South Wales Muscle Group, Stephen called the advocacy team and asked for support. The team drafted a detailed letter on the reasons why the bathroom needed to be extended. This would normally be enough to resolve an issue, but not this one. Caerphilly Council ignored all communication from Stephen and the team, and they were left with no choice but to contact Anola’s local councillor, Harry Andrews.

Councillor Andrews quickly familiarised himself with the case and made contact with the Council’s Assistant Director of Adult Social Services. The Council took notice of his concerns and agreed to another OT assessment, which ended in an agreement to extend the bathroom.

If you are struggling to get vital adaptations made, or battling to get the benefits, services or 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

Muscular Dystrophy Campaign Town and Gown 10k Sunday 12 May 2013

Come and join 4,000 runners of all abilities in the 32nd Muscular Dystrophy Campaign Oxford Town and Gown 10k run and help us turn Oxford orange on Sunday 12 May 2013. Voted one of the best road races in the UK, the Oxford Town and Gown 10k gives entrants the unique opportunity to run through the closed streets of Oxford city centre, passing historic sites and ending in the beautiful University Parks. The route is flat and scenic, which makes this event perfect for everyone, including those who want to take to the streets in fancy dress, beginners who have signed up to their first race to the more experienced runners who want to run their personal best. We also have a 3k junior race suitable for children aged 9 to 15 years. The race is organised and funded entirely by the Muscular Dystrophy Campaign, to raise vital funds and create awareness to fight muscle-wasting conditions in the UK. To date, the Oxford Town and Gown 10k has raised more than £1m and we hope to hit the second million within the next five years.

On the web For more information and to register please visit our brand new website www.townandgown10k.com

Get involved

We have a wide range of fundraising events planned for 2013. Find out more on our website. We’d love you to join in!

Rewarding parnerships 22 November, House of Lords

hirty-five people gathered in the House of Lords in late November to hear updates about the charity’s work. The bi-annual President’s Club lunch, held to thank the charity’s Vice Presidents for their contribution to the charity, also included an update from the charity’s pro bono law firm. Roberta Downey, Partner at Hogan Lovells, spoke of the success of the partnership the law firm has formed with the Muscular Dystrophy Campaign’s advocacy service over the past year. “The firm is extremely proud of its partnership with the Muscular Dystrophy Campaign and everything that it has achieved, and we look forward to working with the charity for years to come,” Roberta said.

The lunch also included the opportunity to present Ian Corner with the Vice President of the Year award in recognition of his many achievements for the charity. Through his committee, Friends of Muscular Dystrophy, Ian has dedicated a great deal of time and attention to supporting families with muscular dystrophy and related neuromuscular conditions, and has raised more than £600,000 for equipment to promote mobility and independence for families in the North West. Ian has also worked passionately to gain the support of influential people and corporate donors and has developed key partnerships for the charity.

An evening with Sir Terry Please come and join us at a new and exclusive fundraising dinner on 5 June 2013 with Sir Terry Leahy, the man who transformed Tesco’s fortunes. At the event, not only will you get the chance to meet Sir Terry, but also to hear him interviewed by BBC Radio 4 Today’s programme host, Sarah Montague. This event has been organised by Vice Presidents of the charity – Andy Martin, Martin Moore and Simon Knights – and they would be delighted if you would join them for what should be a most enjoyable and interesting evening. As one of a select group of esteemed guests, we hope you’ll help us raise more than £30,000 towards our vital work. If you’d like to find out more, please get in touch with Zoe at z.williams@muscular-dystrophy.org

www.muscular-dystrophy.org 25

“ A fantastic day enjoying ourselves

all the way and helping a very good cause at the same time! As the last ball was putted, the other three team members turned to me and said, ‘We’ll do this again next year! “

Four courses in one day – come and play golf with us The Four Course Classic 2013

Bob Cole

Friday 21 June 2013

Chip in, challenge yourself and change lives... For those who don’t know about the Muscular Dystrophy Campaign’s Four Course Classic, it’s an opportunity to test your golf to the limit. You get to play 72 holes of golf in a single day, at four different courses, all the time raising funds for the vital work of our charity. The event is held on one of the longest days of the year, so you tee off around sunrise and reach the fourth clubhouse just as the light fades. Imagine: 72 holes in 16 hours, covering 15 miles of fairways. And that’s without any trips to the rough! We have 400 fantastic courses right across the UK for you to choose from, including some of the finest in the country. There are also great prizes to win.

Signing up for the Four Course Classic is really easy. All you need to do is visit our website (www.fourcourseclassic. co.uk), choose your event and sign up. It’ll cost you just £50 per team. (This early bird offer is until the end of February only; thereafter it’ll cost you £100 per team.) We ask you to raise £250 per golfer/£1,000 per team in sponsorship, all of which goes to the Muscular Dystrophy Campaign to help win the fight against muscle-wasting conditions. Last year’s Four Course Classic raised more than £59,000 towards our vital work in fighting muscle-wasting conditions. Come and help us raise even more in 2013 and make it the best Four Course Classic event yet!

The early bird £50 registration fee (or £100 from 1 march) includes:

An award-winning fundraiser and her dream

olton resident, Christine Ogden, has a dream: a cure for Duchenne muscular dystrophy, the severe muscle-wasting condition that affects her 11-year-old grandson. Her remarkable efforts to raise funds for the Muscular Dystrophy Campaign’s groundbreaking research are not only commended by the charity, but have also recently earned her a Family and Community Services Award from the Rotary Club of Bolton-le-Moors. Christine has been fundraising for the Muscular Dystrophy Campaign since 2003, when her grandson was diagnosed with the devastating muscle-wasting condition. Over the past years, Christine has raised more than £40,000 for the charity. Her main fundraiser is an annual concert, and in November last year she held her eighth one. These concerts always feature a choir or a brass band, they are always held in November in Christine’s home city of Bolton. They also always include the playing or singing of the song that inspires her fundraising efforts: I have a dream. In 2008, the charity recognised her fundraising support with a President’s Award for Fundraiser of the Year.

n Four complimentary rounds of golf n A branded polo shirt n A comprehensive fundraising and preparation pack. If you’d like to find out more or to sign up for the 2013 Four Course Classic, Hayley Gill would love to hear from you. Contact her on 020 7803 4824 or golf@muscular-dystrophy.org

On the web www.fourcourseclassic.co.uk

Spreading the Spirit of Christmas The Muscular Dystrophy Campaign’s Spirit of Christmas concerts were held all around the country during December. The Oxford event, which has support from Spirit of Christmas founder Sarah Kelly, was held in the beautiful Christ Church Cathedral and raised a fantastic £15,000. The concert, which played to a full house, included readings from Tamsin Greig, Bill Paterson, Sophie Thompson, Anthony Howell, Jamie Glover, Claudie Blakley and Helen Atkinson Wood and performances by the award-winning Dragon School Choir. Other regional Spirit of Christmas concerts took place in Writtle, Hyndland, Paisley, Gloucester, Bangor, Stoke Newington and Bristol, and together these raised a fantastic £18,000.

A regular attendee at the National Conference, Christine has also been on a number of parliamentary visits to assist the charity’s campaigns team and regularly writes to celebrities, politicians and business leaders to try to gain support and raise awareness. Christine has already booked the church for next year’s fundraising concert on Saturday 16 November 2013. It will again be held at the accessible Christchurch Cathedral in Heaton. Call Christine on 01204 841506 to find out more.

www.muscular-dystrophy.org

Richard Attenborough

Fellowship Fund The Muscular Dystrophy Campaign recently launched the Richard Attenborough Fellowship Fund to honour Lord Attenborough’s lifelong commitment to the charity and its world-class research. Through the Fund, the charity aims to ensure the future of clinical research and training at leading UK neuromuscular centres in Newcastle, Oxford and London.

s President of the charity, Lord Attenborough dedicated many years and travelled the length and breadth of the country to fundraise for vital research for muscle-wasting conditions. A naturally charismatic person, Lord Attenborough’s passion and empathy for families affected by these devastating conditions has always meant that when he speaks, people listen. Now that he has retired from active charity work, our hope is to keep alive his remarkable commitment and passion not only for the charity in general, but for research into effective treatments and cures in particular. Sue Barker MBE, our charity’s President, and Victor Dubowitz, an eminent neurologist and author of research papers and books on neurological disorders in children, both give us a glimpse into Lord Attenborough as they know him. Photograph: courtesy of Mansfield Chad

They both share his passion to keep the vital research going and endorse fully the establishment of a Richard Attenborough Fellowship Fund.

Sue Barker “I got to know Richard ‘Dickie’ Attenborough well in the late 1990s, after we met at a lunch at Chelsea Football Club. A shared love of sport kept us rapt in conversation each time we met. One day I got a phone call from Dickie inviting me out to lunch and saying, “I have something to offer you”. Alas, it wasn’t the offer of a role in a movie, as I’d hoped! Instead, Dickie said he was ready to step back from his role as President of the Muscular Dystrophy Campaign and wanted me to become involved. At that stage, I didn’t know anything about the charity, but

then Dickie talked about his personal experience of going to hospitals and meeting families and boys with Duchenne muscular dystrophy, and how it changed his life. He also talked about going home to his own family and realising how lucky he was, that his children could run around at will; and how this made him decide to get involved with the charity and to help in any way he could. I was gripped. Having been so privileged in my own life, I decided I really wanted to help as well.

“Having been so privileged in my

own life, with a professional career in tennis – using muscles – and then another role that tennis has given me, in sports presenting, I decided I really wanted to help as well.“ Dickie said he would always be there to support. He talked about how exciting things were, how research was moving forward, how boys with Duchenne muscular dystrophy were living longer, how it was such a vibrant charity, and I

www.muscular-dystrophy.org 27

decided that I would love to take it on. Through all his years of active work for the Muscular Dystrophy Campaign, Dickie was passionate about finding a cure. The Richard Attenborough Fellowship Fund has been set up to continue his legacy to find a cure for Duchenne muscular dystrophy and related neuromuscular conditions and it’s important to fund clinicians and scientists who will specialise in neuromuscular science and who will make a difference in the future. Having been President of the charity since 2004, I hope that I have maintained the momentum and continued to raise the profile of the charity and awareness of its work. Dickie Attenborough is a wonderful man and I’m proud to keep his legacy of passion and commitment going.”

Victor Dubowitz “My connection with Richard Attenborough goes back to the 1960s, and it started for two reasons: I got interested in muscular dystrophy through my chance link with the Queen Mary Hospital in Carshalton, and subsequently I had some support from the Muscular Dystrophy Group (as it was known then). As a young doctor, I was sent on a two-week locum to Queen Mary Hospital in Carshalton and I met boys in the muscular dystrophy ward there. I was struck by the devastation of the condition, and, at that stage, the lack of any kind of effective therapy for them. What hit me when I saw these boys was the collective immensity of the problem: here was a whole group of young adolescent boys who had lost their mobility. That was enough of a driving force for me to see what I could do to help. Around that same time, Richard Attenborough was invited to go that same hospital to visit some of the children affected by Duchenne muscular dystrophy. His encounter with these boys had the same impact on him as it had had on me; it was somehow magnified for him when he went home and saw his own children running about. From that moment on, he became interested in supporting the charity, wanting to bring relief for the boys and their families through research, and he would travel around the country to the various centres where the Muscular Dystrophy

Campaign worked. ‘Dickie’ is a tremendous character, a very easy sort of person to communicate with. The most striking thing about him is his empathy for patients and families, and his commitment and dedication to

serving the charity. He has a wonderful ability to get across to the public the very progressive nature and severe character of muscle disease and, with his personality, he was able to make appeals that went straight to the heart of people. For the charity’s annual meetings, he would always make an effort to be there and if he was out filming on location, he would always video record a personal message for the meeting.

“ What hit me when I saw these boys

was the collective immensity of the problem: here was a whole group of young adolescent boys who had lost their mobility. That was enough of a driving force for me to see what I could do to help.“ In relation to fellowships, one of the most important and major boosts to my own whole research programme over the years was the Nattrass Memorial lectureship which we got from the Muscular Dystrophy Group. [Professor Nattrass was the first Chairman of the

Muscular Dystrophy Group when it was founded in 1959, and, together with Lord Walton of Detchant, published an internationally-acclaimed paper on the classification of muscular dystrophies.] I’d been working single-handedly running the clinical programme and it was necessary to find someone to work with me on the clinical side and take on some research. With this Muscular Dystrophy Campaign funding, I was able to take on Dr J Z Heckmatt to join me. He had been working with supportive ventilation and non-invasive ventilation and would go out to the homes of patients at night to adjust their machines (about 25 children were on mask ventilation at home). These young people were now surviving beyond the early period of respiratory failure, into their early 20s. Dr Heckmatt also had the initiative to apply ultrasound imaging to muscle (the first time in the world), which became routine on all patients in our clinic, and became the forerunner of CT/CAT (computerised axial topography) scans and MRI (magnetic resonance imaging). All this came out of the benefit of having a dedicated person working specifically on a programme relating to muscle disease. Research is an expensive commodity and you can’t do any research without the funds to support the scientists. I’ve always thought it’s important to ‘back the horse’ if you can find the right individuals who have the right commitment to a project and are enthusiastic to do it. I have no doubt that the Richard Attenborough Research Fellowships will also enjoy great success in this way and will draw the best, most enthusiastic and dynamic people, into the field.”

How can you help? If you would like to make a contribution to this Fund, please contact Anna Porcherot on 0207 803 4816 or a.porcherot@muscular-dystrophy.org Please also consider donating online at www.muscular-dystrophy.org/richardattenborough

What will you be funding? Early research and clinical trials are hampered by a shortage of researchers and specialists. We identify promising projects and invest in their early stages, which can lead to huge scientific advances. The Richard Attenborough Fellowship Fund will drive the research he worked so hard to develop, seeing treatments progress to clinical trial for the benefit the families affected by muscular dystrophy and related neuromuscular conditions.

Target MD and Target Research

who really want to read them, and they’re both now produced fully in-house, the Muscular Dystrophy Campaign can free up more funds to spend on further research, campaigning, support and equipment grants.

In these harsh economic times, we’re working hard to save money. Now more than ever, we rely on every penny of your donations to fund vital research and provide support and care for people with muscular dystrophy and related conditions. With this in mind, we‘ve launched our new-look Target MD and Target Research – both to be delivered to you four times a year.

If you’d like to subscribe to the magazines, please post your details, together with a cheque for £18 made payable to ‘Muscular Dystrophy Campaign’ to Target MD Subscriptions at 61 Southwark Street, London SE1 0HL:

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

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 £___________

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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:

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Mr and Mrs Christmas With no personal connection to muscular dystrophy and related neuromuscular conditions, Peter and Nancy Andrews have been involved with the Muscular Dystrophy Campaign since it was established 53 years ago. They developed and managed the charity’s Christmas card sales since the early 1990s, and currently look after the Christmas card shops in and around Solihull. After half a century of generously giving their time and energy to the charity, it doesn’t look like they are about to stop working any time soon. Peter, 91, and Nancy, 89, have watched the charity grow from the humble roots of a local group running informal coffee mornings and fundraising activities into the national charity that it is today. The charity’s vision of leading world-class research and supporting people across the UK who are affected by muscle-wasting conditions began when the charity was started by Solihull businessman, Joseph Patrick, in 1959. Peter was the charity’s first treasurer, and he and Nancy threw themselves into every aspect of fundraising for the charity. Their hard work and dedication to the cause were recognised when they were awarded the first ever President’s Award from Sue Barker in 2006. Peter also received an MBE in 1998 for services to the Muscular Dystrophy Campaign. Peter is also an Honorary Vice President of the charity. Get involved... locally. The Muscular Dystrophy Campaign’s supporters, branches and fundraising committees make a huge effort in raising money to help fight muscle-wasting conditions. If you would like to get involved in your local branch or committee, our Volunteer Fundraising team would love to hear from you. Do get in touch with them on 0845 8729058 or volunteerfundraising@muscular-dystrophy.org

A big year for English powerchair football Just before Christmas, the Wheelchair Football Association (WFA) heard the great news that it will receive £350k of National Lottery funding from Sport England’s Inclusive Sport programme. With this funding, the WFA will deliver a three-year project to raise awareness and provide opportunities for people to become involved in powerchair football. Sam Bull, National Development Manager for the WFA, said the funding and recognition were huge steps forward for the WFA. “This is great news for the sport and is a brilliant reward for the sport, which has grown and come a long way in a short space of time. 2013 is promising to be a great year for all involved in powerchair football in England, and we are delighted to announce that the Muscular Dystrophy Campaign is one of the partners that we will be working with to deliver this project. “The project will provide more than 7,500 opportunities for people to participate in powerchair football at a grassroots level throughout England. Three Regional officers will be providing coaching sessions and will be running events to get new people playing,” said Sam. The project will start in April 2013. Look out for more information about how you can become involved and how the WFA and the Muscular Dystrophy Campaign are working together to promote powerchair football.

News from on the pitch

Make Today Count Friday 1 March 2013

Be one of the 100 skydivers, jumping 10,000ft for our charity, and Make Today Count for the 100 boys diagnosed with Duchenne muscular dystrophy in the UK every year. Visit muscular-dystrophy.org to find out more.

The new National League season kicked off in November with 22 teams competing in two divisions. After four weekend events, Northern Thunder and current title-holders, Aspire PFC, remain unbeaten at the top of the Premiership table. In the Championship, newcomers Sale United are top on goal difference, just ahead of Brighton & Hove Albion. Both teams have started strongly, and it is shaping up to be another great season.

www.muscular-dystrophy.org

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Hi everyone, I hope you had an enjoyable Christmas. Did you follow our special advent calendar, running throughout December that we renamed MDCember? Each day revealed another Muscular Dystrophy Campaign star, celebrating your fantastic achievements from 2012. I am excited about the year ahead, in particular, expanding our digital presence and hopefully meeting more fantastic supporters online. Another challenge for me will be skydiving for Make Today Count in March. I will be in good company, as our ambassador, actress Kelly-Marie Stewart has signed up herself and some celebrity friends, and has been busy spreading the word on Twitter. If you’re taking on a fundraising challenge this year, don’t forget to mention @TargetMD in your tweets, so we can retweet.

Helen Putnam Online Manager

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

Hello from Target Research We’d like to wish all our readers a happy new year and welcome you to the first edition of Target Research this year. In this issue, our main feature is about the clinical trials infrastructure we fund and how important it is to make sure that people with neuromuscular conditions in the UK don’t miss out on upcoming clinical trials. We talk to the scientists and clinicians at Newcastle University who have recently started two clinical trials. We also interview Dr Saam Sedehizadeh – a clinician who has recently been awarded a Muscular Dystrophy Campaign-funded Clinical Training and Research Fellowship to carry out research into myotonic dystrophy at Nottingham University. And, as always, we have the latest research news stories from around the world including updates about exon skipping technology and the discovery of a new mutation linked to facioscapulohumeral muscular dystrophy type 2. I do hope you enjoy this edition of Target Research. If you have any feedback or there are any research questions you’d like us to answer in the next one, I’d love to hear from you.

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

Regular exercise at home is encouraged to help maintain and improve muscle tone, improve circulation and flexibility, decrease fluid retention, improve bladder function and increase stamina levels, all vital for anyone with limited mobility. mobilit

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