Target MD 2013 (3 of 4) by Muscular Dystrophy UK

magazine

Target MD Issue 3 of 4 2013

Meet Lady Campbell

Health and wellbeing Hints, tips and strategies

Campaigning news

Research updates

Fundraising events

Best of the web

Trailblazers

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www.muscular-dystrophy.org 03

welcome We are at last enjoying what seems to be the start of summer although concerned the warmer days may prove to be short-lived. You will be able to read the new Target MD during these longer summer days and I hope the news and the information will also warm your heart as you read about our work in fighting muscle-wasting conditions. Progress in research continues and we are determined to accelerate the speed of developments. Reports on the clinical trials for Duchenne muscular dystrophy continue to be encouraging although these are still early days and we are advised a full set of results from the largest study to date will be published in November. We are driving on with the Parliamentary Inquiry into access to new treatments for rare diseases like Duchenne muscular dystrophy and the Inquiry report will be launched in September. There is need for faster regulatory approval for emerging treatments which should be made available to patients in the NHS as quickly as possible. Every day is vital, as you know. Improved access to specialist healthcare and support is also needed urgently and we are pressing NHS commissioners – the people who hold the purse strings – to work with us and the consultants to improve services. We need more centres of clinical excellence across the UK and it is encouraging to note the progress we have made, although more needs to be done. For individuals and families, I am delighted with the help the advocacy service is giving to many people, and we are extending this vital service. My thanks must go as ever to all of our dedicated supporters and volunteers right across the country who do so much to promote the charity and raise the funds needed in the fight against muscle-wasting conditions. You’ll read about Brandon’s Fund set up by the Govender family in Scotland and also read about the healthy eating regime introduced by Mark and Dawn Creswick in Yorkshire. Both families are effective fundraisers like so many others and their amazing efforts underpin our work including support for cutting-edge research, the fight for improved health services, our grants for wheelchairs and so much more. We can see the progress as we get closer to the day when muscle-wasting conditions will be beaten. Thank you for all your support

Robert Meadowcroft Chief Executive

www.muscular-dystrophy.org

Contents Features

News

Regular

08 The Lady who defeated the Government 22 Newly accredited clinical centres

06 Letters

11 Emotional and physical wellbeing

22 New team in Preston

22 News

12 Martynâ&#x20AC;&#x2122;s best friend

22 Our condition-specific information days

24 Advocacy updates

15 Healthy future

23 Trailblazers call for sporting chance

28 Fundraising events

17 Nutrition and neuromuscular conditions 23 New work placement scheme

30 Best of the web 30 Hello from Target Research

On the cover: Baroness Jane Campbell of Surbiton

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 about 6,000 others and follow us for regular updates on our work @TargetMD

Interact with us and around 10,000 fans on our Facebook page at: www.facebook.com/ musculardystrophycampaign

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

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

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

Disclaimer

Muscular Dystrophy Campaign 61A Great Suffolk Street London SE1 0BU our new address 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,

I write to you from our new London offices in Great Suffolk Street. We’ve just moved in here, the sun is shining and everything looks sparkly and new! Do come and say hello if you’re in the neighbourhood! So this edition of Target MD focuses on health and wellbeing. It’s a big topic to cover and we’ve had loads of contributions of stories, experiences, as well as hints and tips from people affected by musclewasting conditions. I’m sure you’ll find it interesting to see what coping mechanisms some families have adopted, and what new diets and lifestyles others have introduced in order to manage their muscle-wasting condition. I am also thrilled to introduce you to Baroness Jane Campbell of Surbiton, whom Amanda (our designer) and I had the privilege of meeting at her home earlier this year. A courageous politician and catalyst for change both in the House of Lords and in the wider world, Baroness Campbell is not only a great role model for disabled people but has also been named the country’s most influential disabled person. You will also get to read about our wonderful Team Orange runners who did us proud at the Virgin London Marathon in April and at the Muscular Dystrophy Campaign Town and Gown 10k in Oxford in May. We update you on a few recent and forthcoming fundraising events around the country, bring you more evidence of our campaigning and advocacy successes across the country and the usual round-up from the Wheelchair Football Association. Do let me know if you have any thoughts or comments about the magazine, or any ideas for future editions. We always 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 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. especially the whole section about care. My son, Richard, died three years ago, aged 28, so I know only too well the importance of care. However, I was disappointed that there was next to no mention of care in Scotland. Care here is pitiful! We have no Muscle Centre or Respite Centre. Respiratory care is improving but there is very little for everyday living and after 18 you can forget about physiotherapy. Perhaps in future editions you can highlight the gaps in care in Scotland through stories of families here who struggle every day.

E McDermott

From the charity. We are so sorry to hear about your

loss. With gradual improvements in specialist care in Scotland for people affected by muscle-wasting conditions, we recognise there is still much to do. At the last meeting of the Cross Party Group on Muscular Dystrophy in the Scottish Parliament, we heard about the emerging situation whereby some hospices are planning to limit their use to young people only, with many younger adults facing the prospect of losing vital respite care. We’d encourage Scottish supporters to get involved in our Muscle Groups to ensure access to respite care and push for further improvements together. If you’d like to find out more, do get in touch with us on 020 7803 4839 or at campaigns@muscular-dystrophy.org

Dear Editor, I have facioschapulohumeral (FSH)

muscular dystrophy and am ‘fighting’ to ensure that I maintain the ability to walk and undertake other activities as long as possible. Because I live in Wales, trying to get access to ongoing physiotherapy and hydrotherapy may be different from other parts of the UK. I have had a few hydrotherapy sessions which I found really beneficial, as well as physiotherapy. However, after a short course of treatment I had received ‘my quota’. I realise that this is because of financial restraints. But my argument is that if I receive ongoing physio and hydro – even if only occasionally – this could save the NHS (Wales) money in the long term because I will, hopefully, remain active longer and be able to look after myself without the need for carers etc. When I wrote to my local health board about this, financial restraints and long waiting lists for physio and hydro were the reasons I was given that I could not have ongoing treatment. However, a suggestion was made that if a group of people with neuromuscular conditions in the area would like to get together, then we could use the hydrotherapy pool in a local hospital at a charge to ourselves when it was not being used. The problem with that idea is finding enough people to make it cost-effective. At present there is no qualified physiotherapist for adults in my health authority (Abertawe Bro Morgannwg) but this issue is being addressed thanks to the superb support we are receiving from the Muscular Dystrophy Campaign head office and the Cross Party Group in the Welsh Assembly Government. I rely on complementary therapies, such as reflexology and the Bowen technique to keep my body ‘in balance’.

Looking ahead

Janet M Neilson

In the next edition of Target MD due out in October 2013, we will focus on the high street.

Here’s how you can get in touch with us

At a time when most of us (apart from those super-organised early-birds!) will be thinking about our Christmas shopping, we look at just how accessible the high street is. If you have a high street shopping experience you’d like to share with our readers, or any suggestions for stories, please do get in touch with us. As always, we’ll also feature our latest news, features and updates that keep you 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.

Please note that the charity has moved its office in London: The Editor Muscular Dystrophy Campaign 61A Great Suffolk Street London SE1 0BU There is no change to our other contact details. t: 020 7803 4836 e: targetmd@muscular-dystrophy.org tw: @TargetMD or @RuthWriter

KathrynAnnSwezy/istock

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Feature

The Lady

who defeated the government

fight for the right just to â&#x20AC;&#x153;Ibesimply a citizen with equal rights. â&#x20AC;&#x153;

www.muscular-dystrophy.org 09

Baroness Jane Campbell of Surbiton describes herself as a courageous politician. An independent living activist. The Disability News Service describes her as the most influential disabled person in the country. I would describe the life peer as strong, ambitious, driven, deeply compassionate, highly motivated, powerful, successful, challenging, creative, direct, witty and engaging. Green-fingered too.

Photo: Amanda Nee/Muscular Dystrophy Campaign. Illustration: geraria/istock

aroness Campbell is unequivocal about what she wants to see changed for disabled people and by speaking out and taking action, she works hard every day to make sure that change happens. And it does. On the day we met Baroness Campbell at her Surbiton bungalow, she was particularly upbeat. “I defeated the government this week,” she told us, as we met her in her living room. Baroness Campbell made history at the end of 2012. She won the right to have her personal assistant with her in the Chamber to read for her, when she became too physically tired to speak. She believes this boosted her physical energy to battle on with her amendment during long debates, and gave her the edge she needed to fight for the Equality General duty in the face of government resistance. “I simply fight for the right just to be a citizen with equal rights. That is why I did the General Duty because it is about inclusive equality. There are many barriers faced by disabled people that are also faced by single women, women in general, people of minority race groups, religions, ages. “Where there are unspoken, underlying prejudices, why do we all campaign separately? With clever campaigning moves with other equality groups, we could garner more political power and have more ability to change. It’s about co-production, co-operation, shared ambition.” That ambition has seen Baroness Campbell leave school at 16 with no qualifications and go on to achieve a degree in history and a Masters in political history. She went on to establish the National Centre for Independent Living (NCIL), change the mindset of social care through her work at the Social Care Institute for Excellence, fight for – and win – the right for Direct Payments for disabled people, and lead a protest of 100 wheelchair users that not only stopped traffic on Westminster Bridge but also forced the modification of London buses to make them accessible for disabled people. “The protest was a powerful demonstration of what we were trying to say. We thought ‘if this is inconvenient for you, well, welcome to our lives’! “I came into the working world wondering why charities were not fighting for jobs, taxes and a right to independent living. When I met some equally radical thinkers, we set up the NCIL – the only organisation run by disabled people for disabled people. We ran it on a shoestring but our feeling was that we would rather have no money than no voice. “I had also realised that it was attitudes, rather than my disability, that could stop me getting where I wanted to go.” Through the NCIL, which now has over 50 small and large centres across the UK, Baroness Campbell fought for

the rights of disabled people to a life ‘like everyone else’. Baroness Campbell describes the victory of winning the fight for funding to keep disabled people independent and self-determining as similar to ‘winning the vote’. “With that victory, I saw people like me go from black and white into colour. I consider myself lucky to have been born at a time where disabled people became liberated. We got stronger, people began to listen; they had to listen. “I now see disabled people get jobs, set up businesses, get married, fall in love, have relationships, get up to mischief (we have a right to be bad, the same as we have a right to be good). Disabled people are ordinary men and women, boys and girls, just like everyone else,” Baroness Campbell said. Born with spinal muscular atrophy*, and describing herself as being labelled severely disabled, with many physical limitations including being tube-fed, Baroness Campbell won’t allow her disability to define her or what she can do. It has instead fuelled her determination to become a role model for other disabled people. “Think of me as a courageous politician not a courageous disabled person – there’s a difference! When I speak in the House of Lords, I feel sick and I get stage fright. Inside I am dying. But if I can get to the top, then, hopefully, other disabled people might think they can too.” When Baroness Campbell got to the House of Lords six years ago, she joined the joint committee on human rights and challenged the government on their behaviour in this regard. She has also established the biggest All Party Parliamentary Group, for Disability, and has worked hard to make the House of Lords more open, by changing access so that there are fewer no-go areas if you are a wheelchair user. Baroness Campbell describes changing legislation and attitudes as ‘pretty cool’. “However, we all need people who will tell us where we are going too far. When I start to boss my husband, Roger, around, he says ‘well, you’re not in the House of Lords now’. ” When I asked Baroness Campbell what she does to relax, she laughed, but went on to say that she loves cooking and baking, and she loves to work in her garden. We spent a little time with her in her back garden haven, filled with spring blossoms and colour. It struck me as further evidence that when Baroness Campbell plants something – be it an idea or a seedling – it always grows. And then it blossoms.

On the web DNS List of Influential Disabled People: disabilitynewsservice.com *www.muscular-dystrophy.org/sma

Feature

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 11

Emotional and physical wellbeing When we asked our supporters and colleagues what coping strategies they adopt to deal with the emotional, physical and psychological impact of being affected by muscle-wasting conditions, it led to some healthy discussion. All the ideas and thoughts in the feature pages that follow, whether anonymous or not, come from people affected by muscle-wasting conditions.

“Cathartic is one of my favourite words. My CBT therapist is helping me to confront a few problems rather than deflect them. The biggest step for me was actually talking about it to my GP for the first time.”

“Most people just will not realise that psychological factors are always going to be an underlying part of any facet of our lives but the word ‘progressive’ is just massive in the case of a neuromuscular condition. I prefer to add ‘inexorable’ and ‘unrelenting’ as well. Having said that, some of us will deal with it much better than others and it is the young who are going to have the most problems, often resorting to anger and alcohol.”

cloudnumber9/istock

“Our doctors are in charge of our health and wellbeing, but sometimes we have to be dragged kicking and screaming along the right path. A rare condition like muscular dystrophy will confuse patients and doctors alike and lead to only some problems being addressed. The psychological side of things will always be the one most ignored, which is why I was pleased it’s being addressed in Target MD. Coping strategies often help us just to cope, they do not solve.”

“Counselling would be good; it’s just nice to talk to someone who doesn’t judge you.”

“Many of us live our lives by coping strategies even though they are often just deflecting from and avoiding some of the issues involved.”

“I would like a session with a counsellor, away from family, in my yearly check-ups. Psychological support is so important for individuals and families. With muscular dystrophy being progressive, there is always something new to get your head around, especially big or sudden losses in movement, breathing or an illness.”

“Now looking back, my coping strategy has always been to deal with my muscular dystrophy by totally ignoring it. I became the gadget expert, again ignoring the real issues: I had made myself completely self-sufficient and was only going outside the front door once every three weeks.”

“You attracted my attention by using the term ‘coping strategy’. That has been my favourite phrase for a long time. My regional care advisor taught me the term and came up with a number of ‘coping strategies’ to solve the physical problems I had as a single-person household. This allowed me to remain independent and not go to the sheltered flat they originally wanted. I even had strategies for eating and drinking, as I am at risk of choking. Being made a case study of how a person with a neuromuscular condition could be supported to remain in their own home meant I got a lot of attention and lots of gadgets and equipment so all was well with the world. Or so I thought.”

“However well people think they are coping, the fact that muscular dystrophy and related neuromuscular conditions are incurable and progressive will always be present and wear heavily on those of us affected, even though many will not even realise it.”

“I realise now that my coping strategies although right on point have been counter-productive. My GP has now referred me to deal with these problems in cognitive behavioural therapy (CBT).”

Feature

Martyn’s best friend Martyn Blenkharn (52) has facioschapulohumeral (FSH) muscular dystrophy. When he met five-year-old Isa in 2010, he says his life changed completely. Isa is a pure black Labrador and has proved to be a remarkable addition to Martyn’s life as his assistance dog.

I can say now is that I enjoy life again. I have “ Allmade new friends, joined new groups and have a great life – all down to my little four-legged friend.

“

www.muscular-dystrophy.org 13

artyn, who lives in Morecambe in Lancashire , was diagnosed with FSH muscular dystrophy in 1974 after it was found that his mother had the condition. His sister also has the condition, as does the older of his two sons. Martyn ran his own retail business until he was 45 and in 2006 got divorced after ‘physical and mental health problems’ started to affect his family life, and led to several suicide attempts. “I first found out about Dogs for the Disabled when at a Muscular Dystrophy Campaign meeting in London. I saw a lady who had muscular dystrophy with her own assistance dog. After doing a lot of research of the different charities that trained these types of dogs, I applied for my own dog in 2009. “The process is a long one with assessments and the like, but in early 2010 I heard that my application had been successful. I was told it could take another 12 months but in March I got a phone call to say they had a dog ready for me,” Martyn said. Martyn was told that Isa would be ideally suited to him as she was a ‘little lively’ and needed a partner who was used to having dogs to give her that extra bit of training needed. Martyn, who is proud to come from a farming family, fit the bill. “I went to the northern training centre in Wakefield for my week’s intensive training and came home with Isa. My life has never been the same since,” he said. Isa is a pure black Labrador from a brood bitch and sire that have had many successful working dogs. Although she is nearly five, Martyn says she still behaves like a puppy. “The things she does for me are quite basic most of the time and to an able-bodied person they are things you would do without thinking about. She fetches and carries around the home, like bringing in the post, fetching slippers or shoes, retrieving the phone and remotes when needed. She also helps me get undressed at night and can even pull the bedclothes up if I need her to. She will put washing in the

machine and take it out when needed, unfortunately she can’t peg it out... yet. “When we’re out and about, Isa helps me do the shopping or picks up things I have dropped. She can even pick up a 5p piece. Isa also will press the button on pedestrian crossings and door openers, basically anything that is difficult for me to do, she does instead. “One other thing that has made a big difference to me is going back to what I said earlier about my mental health. Before Isa, I hardly went out of the house and I relied on others to do everything for me, with carers coming in to help me during the day. This just made my depression spiral downwards. When I got Isa, I had to agree with the charity that I would take her out for at least a 45-minute walk every day. Immediately this meant I had to go out into the world again. This was difficult at first but I had to persevere if I wanted to keep her. “All I can say now is that I enjoy life again. I have made new friends, joined new groups and have a great life – all down to my little four-legged friend. I only have carers once a day to help me get up in the morning; for the rest of the day Isa and I are on our own. I am so much more independent and life is good. I feel better about myself and do not feel conscious of people when out in my wheelchair anymore. “It is said that dogs are man’s best friend; Isa is most definitely that. She is constantly by my side, I never go anywhere without her. Best of all I can talk to her all day long and she never disagrees! “Isa saved my life in so many ways and I am forever indebted to Dogs for the Disabled for giving me the chance to change my life to a far better one than I may have expected,” Martyn said.

On the web www.dogsforthedisabled.org

n Martyn’s condition

maxhomand/istock

Facioschapulohumeral muscular dystrophy (FSH) FSH is the third most common form of muscular dystrophy, affecting more than 1,300 people in the UK and at least 140,000 people worldwide. The degree of weakness or disability can vary widely between different affected members in a family, but can show even greater variation between people in different families. For some, it can result in weakness not only of facial muscles and shoulders/upper arms, but also of additional combinations from neck, forearms, wrists, fingers, hips, legs, ankles and the back muscles. There is currently no treatment or cure for FSH.

If you experience feelings of distress, despair or suicidal thoughts, help is at hand. Speak to your GP or get in touch with a specialist organisation such as the Samaritans on 08457 90 90 90 or jo@samaritans.org

Feature

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

www.muscular-dystrophy.org 15

learnt that the whole aspect of losing “ We weight, maintaining weight, being healthy

Building a healthy future

and having more energy is based upon how much nutrition you have in your body.

Mark and Dawn Creswick, of Sheffield, whose five-year-old son Harley has Duchenne muscular dystrophy, decided to change their diet and lifestyle to become healthier, fitter and more energetic for what the future holds for ‘our Harley’. They also have a two-year-old daughter, Freya. Mark shares their story here:

t all started when Dawn and I went to a new Wellness Club at our local swimming baths. The Wellness Coach, who knew Dawn from her fitness classes, gave us a wellness evaluation. They measured all aspects from our body fat percentage, weight, body water percentage, muscle mass, physique type, basal metabolic rate (kcal), metabolic age, bone mass and visceral fat, as well as our measurements. After this, they talked through what we currently eat and what exercise we do, and recommended to us a new, colourful balanced diet and more activity. We learnt that the whole aspect of losing weight, maintaining weight, being healthy and having more energy is based upon how much nutrition you have in your body. So, whether you want to lose or maintain weight, the ratio is the same – 80 percent nutritional food/drink, 20 percent exercise. Already, we have both lost weight and body fat, and have reduced our measurements significantly. Our ultimate reason for changing our lifestyle is so that in time we will become more healthy and energetic for when Harley’s Duchenne muscular dystrophy becomes worse; we want to be able to lift him, move him more easily but also we don’t want to be too tired ourselves. This lifestyle change has already given us loads more energy. With the way we were living, we would not have managed to run one kilometre. We are now training for the 10k Great Yorkshire Run in Sheffield on Sunday 29 September, and we know we can do it. The support network we have is great. Plus, Dawn does Zumba every week; we both go to the gym and swim a few times a week, and most importantly, we go for a 30-minute walk every day. From a diet that included tea, coffee, chippy lunches and coke, crisps and chocolate, we have now switched to a totally different diet that includes herbal beverages, nutritional protein-based shakes for breakfast, healthy snacks, and healthy balanced meals with at least two colourful foods and lean protein. We also drink at least two litres of water every day. I would recommend this lifestyle change to anyone who knows they have some tough years coming up and they want to be ready for them. Mark and Dawn have set up Harley’s Fight Foundation to raise awareness and funds for the charity’s Duchenne Research Breakthrough Fund. www.muscular-dystrophy.org/harleysfightfoundation

“

Feature

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For more information or to locate your nearest dealer visit www.quickiepower.com/MD or call 0845 605 66 88 and quote JIVEMD

www.muscular-dystrophy.org 17

Nutrition

know diet is extremely “ Iimportant, but with Duchenne muscular dystrophy, I really didn’t think a change would make that much difference.

and muscle-wasting conditions Often with muscle-wasting conditions, there are associated gastrointestinal issues that will influence nutritional health. Healthy eating applies: avoid any potential food allergens (e.g. wheat and dairy); eat foods rich in antioxidants; avoid refined and sugary foods; eat less red meats, more lean meat and oily fish; reduce trans fats; avoid coffee, tea, alcohol, tobacco and other stimulants; and drink a minimum of six to eight glasses of water daily. Maximising nutrient support for muscle tissue should also be a primary aim. Good nutrition does not treat the condition but will help to support and maintain physical and mental health.

geraria/istock

Dr Rhonda Lee, Integrated Health Consultant

Just his cup of tea

Antioxidants

Dan Baker, 38, has Duchenne muscular dystrophy. Earlier this year, his GP sent him for a blood test, and the results showed his white blood cell count to be extremely low.

According to Dr Rhonda Lee, the antioxidants that Dan has been taking would have an impact on his immune system and general health, and would therefore have made a positive difference to how he is feeling.

“Together with my best friend, I searched the Internet for ideas to help get my count back up. We found quite a lot of things that could help, so I decided on a strict regime: green tea, tomato juice, V8 and 1000mg effervescent vitamin C. My GP also put me on a special prescription Complan. “These things are far from my favourites, as I’ve always enjoyed cold drinks, cherry cola being my main drink of choice! I also have the attitude of most two-year-olds where vegetables are concerned, so switching to vegetable juice wasn’t easy at first,” said Dan. “After being on this diet for a few months, I must say my health has improved a lot. After four weeks my white blood cell count was back in the ‘safe zone’, I have found my energy levels to be much higher and I actually feel stronger. I have also had lots of compliments on how good I look! I know diet is extremely important, but with Duchenne muscular dystrophy, I really didn’t think a change would make that much difference. I have got quite used to this new diet and while I’m not sure I’ll ever get used to green tea completely, it is quite refreshing to drink ice cold with a squirt of lemon juice! Along with its other benefits, it’s also very good at settling stomach gripes or nausea, for me at least. “I would recommend to anyone to look seriously at their diet, whether they have a form of muscular dystrophy or not. I know things are hard enough when you have a long-term medical condition and looking for pleasure anywhere is natural, but it’s really worth thinking about changing your diet,” said Dan.

“Antioxidants are extremely valuable in maintaining good health, and it’s important not to use antioxidants to replace a good healthy diet. “Always inform your health care provider about any supplements that you may be using and never use antioxidants in place of medical treatments or without consulting your doctor,” said Rhonda.

On the web Dr Lee’s Integrated Health Clinic: www.drlee-ihc.com/antioxidants

“

Feature

He’s my brother

with knowledge allows us “ Travelling to help those affected lead the best and most fulfilling lives possible... “

I was eight and my brother five when he was diagnosed. I would always run from any information about his illness. My mother told us a cure could be just around the corner, and this comforted me greatly. As a single parent, my mother relied heavily on close friends for support and her encyclopaedia for reference. But as a child, and later as a teenager, I struggled to confront each step in the process, constantly anticipating the cure for which we had all been waiting. I remember it felt better to block it all out. I didn’t want to look at wheelchairs, and didn’t want to know about the effects of Duchenne muscular dystrophy. If I ignored the situation, it would lessen the impact. When the first wheelchair arrived at our house, I ran upstairs and stayed there for the 45 minutes that it was being set up. I came down a short while later and saw it as an unwanted, foreign object in the middle of the room. Then I sat in the chair and started wheeling myself around and it became something I could slowly get used to. I did the same for splints, standing frames, back operations and everything else. However, looking back, blocking things out built them up to being bigger obstacles than they turned out to be. A friend of mine has a wonderful expression: ‘we travel hopefully’. That’s my way of coping with things. Travelling with knowledge allows us to help those affected lead the best and most fulfilling lives possible, and keeps us from being too overwhelmed when the illness quietly takes things away from those we love. Yet with ‘hope’, we can work to fight against the illness, pushing those we love to defy its effects, always aware that a treatment could come at any time. Accepting and understanding doesn’t mean a lack of hope, and it certainly doesn’t mean we give up. Through understanding, my mother learnt about physiotherapy, and the best ways to stretch my brother’s muscles. Through acceptance, I got involved with the Muscular Dystrophy Campaign, which funds research into treatments and, we hope, a cure. This has helped both me and my mother, regardless of how they helped, or may eventually help, my brother. Knowing so many fantastic men with Duchenne muscular dystrophy who are living life to the full helps me cope with the knowledge that my brother’s muscles will similarly weaken. Our biggest worry for our siblings, sons, daughters or friends, is that they won’t enjoy life or will lead an insufficient life. Yet the videos I see and the blogs I read written by adults with Duchenne muscular dystrophy reinforce the wonderful fact that people are vastly able and capable. This, along with keeping updated about continued research, helps to paint a wholly hopeful picture of a truly worthwhile life for my brother. And knowing my brother, I have absolute faith that he will live it impeccably. Anonymous

tillsonburg/istock

As the older brother of a young man with Duchenne muscular dystrophy, the topic of coping mechanisms for dealing with the emotional side of a muscle-wasting condition is an interesting one. I’ve always felt that out of all those whom my brother’s condition affects, he’s the one who deals with it in the most admirable manner. He has never once asked why he has his condition – a question I’d constantly ponder – and he is constantly optimistic. To him, things could always be worse.

www.muscular-dystrophy.org 19

randon is a soft-natured and delightful, happy little boy who loves people and animals. He loves to spend time with his brother and sisters but also our large extended family of cousins, aunts, uncles and grandparents. Chris’ extended family lives in Durban, South Africa, so we do not get to see them often. Brandon loves animals and he loves to play with his animal figurines for hours on end. We travelled to South Africa last year to visit family and Brandon still talks about his ‘Africa holiday’ where he saw all his favourite animals such as giraffe, rhino, lions and hippo. He loves visiting his Auntie Angela’s house, nearby, as she keeps his chicken – Jemima – and Wesley’s – Sarah – for them. A new addition to the family earlier this year was Ruby – our chocolate Labrador pup, and Brandon has formed a close relationship with her. Brandon is as yet unaware of his condition. We have recently started telling him that he has ‘special muscles’ that require extra help but he is not yet able to understand fully that his muscles are weaker and he is less able than other children. We intend to teach him gradually about his illness to a level that is appropriate to his understanding. Brandon’s daily routine includes daily muscle stretching, a gentle massage at night along with a drink of antioxidant medication. Apart from that, his life now is no different from other boys his age. He wants to be a fireman when he grows up. Wesley is Brandon’s younger brother (they are 11 months apart). He does not have Duchenne muscular dystrophy – he is energetic, boisterous, playful and at times a little mischievous but he never fails to make us laugh. Brandon was diagnosed with Duchenne muscular dystrophy in November 2011 just before his third birthday. As health professionals ourselves, we were under no illusions about the severity of the The Govender family lives in Kilmarnock in condition. I have worked with several children who have Duchenne muscular East Ayrshire, south of Glasgow. Chris is a Speciality dystrophy, but the reality of the diagnosis Doctor in Addictions Psychiatry and Joanne is a was nonetheless devastating. Initially, our medical knowledge was both a help and Paediatric Nurse in a Special Needs School. They a drawback, as we came to terms with the are a family of six: Holly (13), Jodie (12), Brandon (4) diagnosis and re-assessed plans for the future, both for Brandon and the family. and Wesley (3). Joanne told us about her and For me it was comforting and reassuring Chris’ coping strategies to deal with the effects of to have met and cared for so many young and men who lived fulfilling lives Brandon’s diagnosis of Duchenne muscular dystrophy. boys with Duchenne muscular dystrophy. In terms of coping strategies, Chris threw himself into the science of the condition and the most recent research, and I found it easier to deal with the more immediate logistical and social aspects, such as liaising with the physiotherapists, occupational We have recently started telling therapists and social workers and filling out the numerous forms relating to him that he has ‘special muscles’ Brandon’s disability and educational needs. Almost 18 months on, we continue to function and manage our respective roles relating to Brandon’s diagnosis in this way. that require extra help... When we learnt of Brandon’s condition, our friends and work colleagues were inspired to help in any way they could and suggested some fundraising activities. We decided to name the venture Brandon’s Fund. Part of the reason also was to distract our thoughts from the reality of the progressive condition. So far, Chris and three friends and family have cycled across the length of Scotland – 450 miles over eight days in July last year. In June, scores of family and friends climbed the Cobbler (Ben Arthur Mountain) in Arrochar, and in August, Chris will be doing the 100-mile Ride London-Surrey cycle race in aid of the charity. We were delighted to make our first donation of £8,000 from Brandon’s Fund in April this year to the charity’s Duchenne Research Breakthrough Fund, and we hope to do the best we can to improve the life of Brandon and the thousands of boys and men who live with this condition. If you, like the Govenders, would like to start your own Family Fund and help fight muscle-wasting conditions by finding treatments and cures and improving the lives of everyone affected by them, do get in touch with our Volunteer Fundraising team on 0845 872 9058 or volunteerfundraising@muscular-dystrophy.org

All for Brandon

“

Feature

Bursting that

bubble I never thought I had psychological issues until recently. I’ve always been shy, antisocial and a bit detached – lots of people are – but I had also built barriers to protect myself. I’ve never let my condition of Duchenne muscular dystrophy define me or who I am. I went to ‘normal’ schools, a ‘normal’ university, had ‘normal’ friends and I never accepted help unless I had to. I was given extra time in exams but would stubbornly put down my pen at the same time as everyone else. I don’t like people being proud because I’ve ‘overcome my condition’s limitations’. Judge my achievements on their own merits. I haven’t overcome anything to achieve them, I have just achieved them. Although I’ve tried to live as a ‘normal’ person, I haven’t had a ‘normal’ life. I have a single mother, never met my biological father and never want to; I grew up in the family home with my mum, grandparents and uncle. In my early teens I was pulled away from my family to live with my mum and her boyfriend, and when that didn’t work out, I was pulled away from all my friends too and moved to a new school. When I went to university, I lived at home and commuted. I used my condition as an excuse not to interact socially and have fun. I didn’t want to make friends and lose them; I also didn’t think any girls would be interested in a disabled man. As university ended, I got very ill and it took over a year to get referred to the specialist. In this time I started getting extreme panic attacks. When things improved, everyone expected these attacks to go and they didn’t. My scientific brain rationalised my fears to the point that there was nothing to be done. I continued my life even more separated from people, in my own bubble and hardly living life to the full. Last year when I had to ask for help and interact with people outside ‘the bubble’, I realised there were good people out there with kind hearts. This surprised me. I’d also started making friends online and one friend immediately saw what was going on with me. She encouraged me and guided me to the truth. I started seeing a psychologist because I owed it to those who loved me and I realised I could have a life out there too. I decided to be open to the fact that cognitive behavioural therapy (CBT) could help me. After chatting with the psychologist, I realised I wasn’t who I thought I was. I was the person I’d made myself to be, partly because of my condition but also by using my condition as an excuse.

I went to university, I lived “ When at home and commuted. I used my condition as an excuse not to interact socially and have fun.

“

I had pushed people away and never trusted anyone with my true feelings or deep secrets. When I started opening up online, I was surprised that people appreciated what I shared and it helped them too. My confidence grew. And recently when I flirted with an attractive girl, something very odd happened – she flirted back! She actually liked me and if it hadn’t been for other complications, we would probably have dated. My condition was not an issue. I’ve also realised that as the panic attacks disappear, they were my brain protecting me from emotional pain. I’ve never been bullied or picked on because of my condition, everyone has always treated me as ‘normal’, and I know that people aren’t going to point and stare. I now have no reason to fear that pain. I’m not pitied, and I’m naturally liked. I’m now moving into a new world outside the bubble and it feels really good. Anonymous

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www.muscular-dystrophy.org 21

News

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

Newly-accredited Clinical Centres Three specialist teaching hospitals across the country have been recognised by the Muscular Dystrophy Campaign as new Clinical Centres of Excellence. The Walton Centre in Oxford, the Alder Hey Children’s Healthcare Hospital in Liverpool and the Leeds Teaching Hospital have been described not only as ‘lifelines’ by people with muscle-wasting conditions, but also as the top UK centres for the treatment of muscular dystrophy and related neuromuscular conditions. Owing to the rare nature of these conditions, GPs, nurses and hospital staff often struggle to guide those affected to the correct information, emotional support and treatments. Many patients are left alone to cope with the bombshell of diagnosis, not knowing how their condition might progress or where they can seek help and guidance. The charity audited these neuromuscular services to assess their access to specialist services, such as expert guidance on managing the conditions, physiotherapy and access to respiratory equipment and advice. These can make a life-changing – or life-saving – difference to patients, keeping them off emergency hospital wards. All of these Centres of Excellence offer these services. Nic Bungay, Director of Campaigns, Care and Information at the Muscular Dystrophy Campaign, said the charity applauded these hospitals for their outstanding services to adults and children affected by muscle-wasting conditions. “Unfortunately for many children and adults in the UK, support is wholly inadequate. These three outstanding hospitals have set the precedent for other centres in the UK and this recognition is a tribute to the tremendously hard work of their health professionals,” said Nic.

New team in Preston The Muscular Dystrophy Campaign is delighted that a new paediatric neuromuscular team has been established in Lancashire, led by Consultant Paediatric Neurologist, Dr Christian de Goede. The team consists of a specialist physiotherapist, a specialist neuromuscular nurse, a psychologist and an occupational therapist for children and families affected by muscle-wasting conditions. Sue Hardman from Preston, whose five-year-old son Charlie has Duchenne

muscular dystrophy, said having a team of professionals close to home would make an enormous difference. “This is fantastic news. Charlie’s diagnosis in 2011 really knocked us into pieces, and nobody could tell us anything much about it. This new team will offer a desperately needed one-stop shop not only for practical medical care but also for emotional support,” Sue said. Look out for an in-depth piece on this new team in the next edition of Target MD.

Our information days in Daventry The charity has arranged some specific condition information days recently, which have attracted a great deal of interest. With as much focus on information sessions as on networking, it has been clear to the charity how important peer-to-peer support is, and how valuable it is for people to meet others affected by similar conditions. More than 70 people affected by Ullrich and congenital muscular dystrophy got together in Daventry, Northamptonshire, to learn more about the condition and meet people similarly affected. The day was jointly organised by the Muscular Dystrophy Campaign and Professor Francesco Muntoni and the focus of the information was on research, nutrition, advances in gene identification, advocacy and transition from paediatric to adult services. In mid-May, over 120 people affected by facioscapulohumeral (FSH) muscular dystrophy came together to hear the latest research and care information, share experiences and find mutual support. Organised by the FSH Support Group and the Muscular Dystrophy Campaign, the day was filled with talks, clinical overviews, research updates and an invitation to support the charity’s newly-launched fundraising appeal: Action on FSH Appeal. A third information day was held in mid-June with a focus on Becker muscular dystrophy. This drew together more than 100 people. From the feedback we got, it was clear how valuable the days were for families and individuals to meet other people affected by similar conditions. The Muscular Dystrophy Campaign’s National Conference on 12 October in Nottingham will offer a further opportunity to hear the latest information on specific conditions.

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

www.muscular-dystrophy.org 23

Trailblazers call for a sporting chance Flying victory In early June, a group of Trailblazers took their frustration with major leisure and sports facilities to Parliament. Presenting their Game On report to the Minister for Disabled People, Esther McVey, the group highlighted how they were not receiving a sporting chance from leisure and fitness facilities. The Trailblazers’ report shows that the leisure industry is still failing young disabled sports enthusiasts by failing to provide usable equipment, cancelling inclusive classes and forcing people to pay full membership, despite not being able to access all service. Raising questions with representatives from clubs and organisations including David Lloyd Leisure, The English Federation of Disability Sport and Boccia England, Trailblazers shared personal experiences and questioned panellists about key concerns including promotion, education, specialist equipment and the cost of paying for carers. A survey of over 100 young disabled people revealed in the Game On report that: n

two out of three cannot use a gym owing to a lack of appropriate equipment

seventy-five percent do not have access to inclusive sport in their local area

three out of four say that better access would encourage them to participate

eight out of ten believe there needs to be more active engagement from local gyms and leisure facilities

n leading gym chains are failing to provide disabled customers with accurate information. The group also discussed setting up a meeting with organisations such as UK Active, to share findings and recommendations with leading representatives from the fitness industry. Developing a mobile application or a national website with information was also a key outcome the Minister was keen to explore with Trailblazers. As part of the enquiry into access to sport and leisure facilities for disabled people, Trailblazer Maddy Rees investigated the accessibility of a number of gyms and leisure centres. She found that for a number of gyms and leisure centres there was no information on their website about facilities available for disabled people. A few gyms offered her a tour and a meeting with a trainer to discuss what could be possible for her. “If you’re looking for an accessible gym, you have to be quite persistent. The websites currently do not really help at all, so it’s worth ringing up and asking, and you usually get a variety of responses. There are some gyms that do have some facilities, and depending on what you are looking for, it is out there. “I also came across the Inclusive Fitness Initiative*, which accredits gyms according to their accessibility. You can search on the respective gyms’ or leisure centres’ websites for this award. I found that quite handy. “For me personally, I would love to find a leisure centre where I could use all the facilities. Spas are quite appealing, especially for someone with a muscle condition, although they are not often considered in terms of accessibility, as they usually have a step down into the spa pool. I would be keen to find a gym where I could swim, exercise and use the spa. You can often find a gym that has one aspect accessible, but not the whole package. “I’ll keep looking, though. I’m sure there are such gyms out there,” Maddy said. *According to their website, the Inclusive Fitness Initiative (IFI) has been established for over 10 years, with a national coverage of 400 IFI Mark accredited gym facilities. Now managed within the English Federation of Disability Sport (EFDS) it is recognised that the IFI Mark is fundamental in addressing inequality in physical activity; to reach inactive populations, raise awareness of the benefits of exercise and create demand. If you are a disabled person looking for an inclusive gym near you, visit our facility search.

On the web www.efds.co.uk/inclusive_fitness

Trailblazers campaigners welcomed the recent news that EasyJet had responded to their Up in the Air campaign by no longer refusing to carry wheelchairs weighing more than 60kg. In a significant change to their previous policies on the carriage of mobility equipment, EasyJet has removed wheelchair weight restrictions and introduced Freephone passenger assistance numbers. In addition, they promised online prices would be guaranteed for passengers who require assistance and therefore book over the phone. Although generally good news, Trailblazers have some reservations about the airline’s new wheelchair carriage policy, which will require wheelchair users to call EasyJet to find out if their wheelchair can be carried on a particular route. A recommendation from the young campaigners group is for EasyJet to publish on their website which airports do and do not hold lifting equipment that can carry wheelchairs.

New work placement scheme for Trailblazers The end of April saw great news for the Trailblazers work experience programme when the City Bridge Trust awarded funding to the young campaigning group to run an extended work experience scheme in London. The City Bridge Trust, The City of London Corporation’s charity, generously agreed to help support 30 Trailblazers and other young disabled people in London through work experience placements within the Muscular Dystrophy Campaign. This builds on the Trailblazers’ informal programme of volunteering placements that has played an enormous part in the success of the network’s campaigns. If you’d like to find out more about work experience placements, do get in touch with us on trailblazers@musculardystrophy.org or visit www.musculardystrophy.org/trailblazers

www.muscular-dystrophy.org

Update on

advocacy The Muscular Dystrophy Campaign’s advocacy service has made a real difference to many people’s lives. When people affected by muscle-wasting conditions struggle to get the assistance they require to live a full and independent life, they approach our advocacy service to help them fight for the services, benefits and equipment they are entitled to. In partnership with the prestigious law firm, Hogan Lovells, who provide pro bono legal assistance for patients and families, the charity has dealt with 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.

Employment law victory Susan,* who has congenital myopathy, contacted our advocacy service about problems regarding a carer’s employment. Owing to illness, the carer was unable to continue working and refused to resign. Susan received some poor advice from a legal service that was only interested in taking the matter to court where she would have been faced with a large bill.

o make matters worse, the carer was in the process of submitting a case against Susan to an employment tribunal. Luckily the advocacy team was able to jump in and, after seeking advice from ACAS (Advisory, Conciliation and Arbitration Service) and law firm Hogan Lovells’ employment law division, was able to act as mediator. By working with both parties, we were able to diffuse the situation and agree a mutual

termination of the carer’s contract including severance payments and holiday pay. This resolution benefits both parties and will allow them to move on from this unpleasant situation. The advice from Hogan Lovells was pivotal in this case and highlights how important our relationship with them is in improving our service and our team’s knowledge of sticky areas such as employment law. *Not her real name.

What a lift Ali is five and has congenital muscular dystrophy. Her mum called the advocacy service seeking support after her application for a through-floor lift and extensive adaptations had been rejected. After some letter-writing advice from Hogan Lovells, our advocacy team drafted a very powerful letter to the CEO of the council. We also canvassed support with Ali’s MP, George Galloway, who wrote a letter to the council and offered support to the family. Working alongside his office, we were able to co-ordinate our action plan which has led to the council agreeing that the adaptation we suggested is reasonable and practical. The council is currently drawing up plans in the hopes that work can begin in the summer. The cost of the adaptations will be around £30,000. Sabreen, Ali’s mum, was delighted.

still can’t believe that the “Iadvocacy team was able to get the council to change its decision. We thought we had exhausted all avenues but the support of the team was the answer to our prayers. I know that my daughter will now get the care she needs.

“

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

www.muscular-dystrophy.org 25

Feature

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Come and join us! Our annual conferences in October are a great place to meet families, find out the latest news from the Muscular Dystrophy Campaign, learn about our latest research from the researchers themselves, and meet neuromuscular health professionals.

FREE NO OBLIGATION HOME DEMONSTRATIONS USED VEHICLES FROM £2995

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If you’re a family affected by any muscle-wasting condition, a health professional involved in the care of such families, or a partner charity of the Muscular Dystrophy Campaign, make a note of the details below. You won’t want to miss these opportunities.

National Conference

When: Saturday 12 October 2013 Where: East Midlands Conference Centre, Nottingham

Scottish Conference

When: Saturday 5 October 2013 Where: Beardmore Conference Centre, Glasgow If you’d like to find out more, or register your interest in attending, please do get in touch with Lyn Inman on 01132 301 313 or lyni@muscular-dystrophy.org

www.muscular-dystrophy.org 27

Team Orange Photos: Chris O’Donovan

in London and Oxford This is what London and Oxford looked like in April and May, as our fabulous Muscular Dystrophy Campaign runners turned the two cities orange.

In addition to running the miles for us, in beautiful spring sunshine, the runners together raised a whopping £370,000 towards our vital work in fighting muscle-wasting conditions. If you’d like to don some orange and join our team for any of our forthcoming events (see page 28), do get in touch with our events team or visit our website. Visit www.muscular-dystrophy.org/events

www.muscular-dystrophy.org

John’s wheels In Target MD Issue 1 of 4 2013, we featured a piece on John Dickson and his electric mountain bike. In that story we mentioned the Dickson family’s quest to get John the right powerchair. Well, the wheelchair fundraising went brilliantly well, according to John’s dad, Paul, and John now not only has his chair, but ‘he’s already getting stuck in’. In May, John took part in our Town and Gown Junior Run of 5k in Oxford, and he ran the 600 metre race at school. He’s been playing in the woods near to his house and the local community is already removing obstacles and kissing gates to help him get around. “Whilst John can no longer walk, this has been the step up he really needed. Its been brilliant,” said Paul. “He appeared on the cover of the Oxford Mail the day after the Muscular Dystrophy Campaign Town and Gown 10k in Oxford, so people are starting to learn what is possible with the right chair.”

On the web www.gojonnygo.org.uk

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

Running in orange in London

On the web

he Virgin London Marathon in April 2013 proved again to be the fantastic fundraiser and supporter-filled event that is has grown to become for the Muscular Dystrophy Campaign. With 103 runners, 18 of whom were own-place runners, Team Orange not only made a big orange impression on London, but are on their way to raising a fantastic £250,000 for the charity. Toya Champ, Challenge Events Manager, said the charity was grateful for the amazing support of the 2013 Team Orange. “We would like to say a massive thank you and congratulations to all of our Team Orange runners for their hard work with training, fundraising and completing the London Marathon itself. Running 26.2 miles and raising at least £1,500 each is a massive achievement.“ Would you like to join Team Orange? You can now register for the 2014 London Marathon; application forms are up on our website. Please provide as much detail as possible as interest in places is very high.

www.muscular-dystrophy.org/londonmarathon

Come and join Team Orange

f 2013 was earmarked as your year to take on a running or cycling challenge, don’t despair! We still have a great selection of events on offer, for those who are new to running or cycling as well as for seasoned pros. And there’s always the option for you to sign up to another event and take on the challenge for the charity. Do get in touch with us – we’ll be with you every step of the way. By choosing to take on a running or cycling event and fundraise for us, you will make a huge difference to the 70,000 children and adults around the UK who are affected by muscular dystrophy and related neuromuscular conditions.

Running events

The Muscular Dystrophy Campaign Town and Gown 10k race series (More details opposite.) The Great South Run, a 10-mile road race on 27 October in Portsmouth.

Cycling events

Ride London 100 on Sunday 4 August is a unique 100-mile closed road event that covers much of the Olympic road race. If you secured a ballot place, please do join our team. London to Paris cycle ride from 4 to 8 September, passing through picturesque Kent countryside, through the small villages and medieval market towns of Northern France. Vietnam to Cambodia from 8 to 20 February 2014 is an exciting bike ride that will take you from Vietnam’s Ho Chi Minh City (Saigon) to the ancient temples of Angkor Wat in Cambodia. Giant’s Causeway Coast Sportive – 7 September Pedal for Scotland – 8 September You can also take part in any national or international event and still raise money for the Muscular Dystrophy Campaign. Sign up directly with the organisers, and then get in touch with us. Our experienced events team will support you every step of the way. For more information, please get in touch. Call the team on 020 7803 4824 or email events@muscular-dystrophy.org

www.muscular-dystrophy.org 29

Meet Sir Terry Guests from the retail and property industries joined together in early June to pledge their support for the Muscular Dystrophy Campaign.

We turned Oxford orange Thank you so much to everyone who took to the streets of Oxford on 12 May 2013, for the Muscular Dystrophy Campaign Town and Gown 10k. This year was our most successful race in the event’s 32-year history with more than 3,800 participants registering. This figure included a whopping 150 Junior runners and several wheelchair participants. Many took on the challenge to turn Oxford orange by wearing anything from orange morph suits, T-shirts and tutus, to several fancy dress outfits including Banana Man, Dennis the Menace and Wonder Woman. It was a great day and we saw many happy faces cross the finish line and proudly collect and wear their Muscular Dystrophy Campaign Town and Gown 10k T-shirts and medals. The runners and supporters enjoyed refreshments from the Race Village – a charity first. We were joined again by our charity Ambassador, Christine Hamilton, who not only started the race with gusto but also volunteered to hand out goody bags and water. We are still receiving sponsorship and are pleased to see that so many participants not only met the £50 fundraising target, but exceeded it. Money is still pouring in, and we have already surpassed last year’s £100,000 total. Would you like to get involved too? Then join us in the Muscular Dystrophy Campaign Town and Gown 10k in Cambridge on Sunday 6 October. In its second year, our Cambridge run is a multi-terrain and scenic 10k run that starts and finishes on Midsummer Common and stretches along the beautiful river Cam, allowing you to embrace the stunning autumnal sights away from the hustle and bustle of the city. Do visit the Town and Gown 10k website, or get in touch with Toya or Rachel on 020 7803 4828 or events@muscular-dystrophy.org to find out more.

On the web www.townandgown10k.com

A national week of thank yous The first week of June, National Volunteers’ Week, gave us a chance to say a huge thank you to our volunteers and to celebrate their amazing achievements. Around 1,400 valued volunteers, right across the country, give their time to help us fight muscle-wasting conditions and help us raise almost a quarter of our annual income. We invited 100 long-standing volunteers to a reception in Parliament on 6 June. Our Chief Executive, Robert Meadowcroft, and President, Sue Barker MBE, presented awards to volunteers who have supported the charity for 25 to 50 years. Volunteer Fundraising Manager Charlotte Allen said, “It’s because of the commitment of our dedicated volunteers that the charity can continue its work to improve the lives of families affected by On the web muscle-wasting conditions.” A round-up of our Volunteers’ The London office also ran a ‘thankathon’, where Week social media activities: staff spoke to, left voice mail messages for or emailed storify.com/TargetMD/ national-volunteers-week-2013 a personal ‘thank you’ video to over 147 volunteers.

They enjoyed an exclusive evening of fine wine and food at the prestigious Four Seasons Hotel in London’s Mayfair with Sir Terry Leahy, the man who transformed Tesco’s fortunes. Writer, journalist and broadcaster, Peter Stanford, interviewed Sir Terry about business, management styles and the secrets of his success. Thank you to the Committee, Muscular Dystrophy Campaign Vice Presidents, Martin Moore, Andy Martin and Simon Knights for opening their address books, encouraging their friends and colleagues to join us for what was a great evening that raised a fantastic £24,000.

Walking in Wales

he Goldthrite family from Neath in south Wales organised two fundraising events over the Easter weekend in 2013 for the Muscular Dystrophy Campaign. What made these fundraising events unique was that they were organised by Sadie, aged ten. Sadie rallied not only her mum and dad, Michelle and Joel, around her, but also their Neath community. Ably assisted by her eight-year-old sister, Abbie, Sadie’s fundraising walk and disco attracted around 70 people and raised more than £1,400 for the charity. Michelle (44) has facioschapulohumeral muscular dystrophy (FSHD), as did her mother. Sadie too was diagnosed with the condition in September 2011. “The idea for a walk came to me when I found out I had muscular dystrophy, like my mum, and that my sister might have it too. My mum’s friend does fundraising so she kind of inspired me to organise the walk,” said Sadie. The Goldthrite girls raised more than £1,400 for the charity. “It was an amazing opportunity and a great turnout. If we raise money for research, there may not be so many people with muscular dystrophy in the future,” said Sadie. If you, like Sadie and her family, would like to arrange your own fundraising event for the Muscular Dystrophy Campaign, do get in touch with us on 0845 872 9058 or volunteerfundraising@muscular-dystrophy.org

www.muscular-dystrophy.org

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Hello from Target Research

Hi everyone, Our bright orange charity wristbands, available to buy from our online shop www.muscular-dystrophy.org/shop, are not only flying off the shelves, but have been snapped having some weird and wonderful adventures, with supporters sharing their #bandoforange photos on Facebook and Twitter. Below are some of my favourites. For more, visit www.muscular-dystrophy.org/bandoforange We’ve also recently launched a series of live Q and A chats with staff available to answer your questions on our Facebook page. So far we’ve answered questions about PIP (personal independence payments), care and information, and advocacy. More live sessions will be coming soon so keep an eye on Facebook for more details. And as usual there has been some fantastic online activity surrounding recent events, most notably, the Virgin London Marathon, and our very own Oxford Town and Gown 10k. Well done to everyone who took part, and don’t forget to let us know if you’re organising your own event.

Helen Putnam Online Manager

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

Sylvester Ruth Martin @RuthWriter Here’s Ray Thomas flanked by Wendy and Theo at the @TargetMD conf in Swansea.

Tanya on Facebook Me wearing my muscular dystrophy band while meeting Phil Demmell from Machine Head!

Helen Putnam @Putters84 reswick #BandofOrange in the media! @MC of page and son Harley on the front @yorkshirepost with @TargetMD

Sarah Rose @evilgiraffe20 Me on the Cuckoo Trail wearing my MDC bracelet.

It’s been very busy in the research team recently – with meetings of the Lay Research Panel and the Medical Research Committee who have been assessing the research grant applications we received back in October 2012. In this issue of Target Research, we take a closer look at the development of gene therapies, which may offer the potential to treat the genetic mutation underlying a condition. Researchers aim to develop harmless viruses to deliver a healthy copy of a gene to the cells where it is needed. This could restore production of a missing protein, and might have the potential to treat some of the conditions we cover. We also talk about visits to our researchers at Oxford University and Royal Holloway (University of London), and we feature the Muscular Dystrophy Campaign’s new research strategy, which sets out what types of research the charity plans to fund in the coming years and defines some of the areas our funding will focus on in the future. I’d like to highlight the research team’s new Twitter account: @researchMDC. I do hope you enjoy reading Target Research. If you have any feedback or have any research questions for us to answer in the next issue, I’d love to hear from you.

Neil Bennett Editor, Target Research t: 020 7803 4813 e: research@muscular-dystrophy.org tw: twitter.com/ResearchMDC

Target MD and Target Research

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

If you’d like to subscribe to the magazines, please post your details, together with a cheque for £18 made payable to ‘Muscular Dystrophy Campaign’ to Freepost Plus RTEE-SUBA-KX2T Muscular Dystrophy Campaign at 61a Great Suffolk Street, LONDON SE1 0BU: I wish to subscribe to Target MD and Target Research for one year, at a cost of £18.

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

The support of all of our celebrity patrons over a number of years has been vital in helping us establish the Richard Attenborough Fellowship Fund. We would like to thank them all for their valued support and continued commitment to our cause, which ensure a strong future for clinical research and training at neuromuscular centres across the UK.

Robin Cousins

Celebrity patron of the Richard Attenborough Fellowship Fund Robin Cousins is a renowned figure skater, Olympic champion and World medallist. Here’s why he is a proud supporter and patron of the Fellowship Fund:

As a charity, we are thrilled that you are supporting the Richard Attenborough Fellowship Fund. What made you decide to become involved? The fellowship is designed to maintain the support that Lord Attenborough was so instrumental in starting. As with much research, those who start research into specific conditions aren’t always able to continue the great work they have started. The Fellowship Fund will ensure clinical research and training continues at the leading UK neuromuscular centres across the country.

How would you describe Lord Attenborough as a person? As a fan of his work both on and off camera, I have never met Lord Attenborough but he is very affectionately thought of by the British public. He’s the type of person that, when someone mentions his name, you smile.

How have you heard about the Muscular Dystrophy Campaign? I learned about the charity from the people who work for it, who are passionate about what they do and will continue to do via the Fellowship Fund.

The writer stuff Sam Povah is not your average 18-yearold. Not only has he survived an eColi infection after major spinal surgery, but he’s also written and published his own book. The Denbighshire schoolboy, who has Duchenne muscular dystrophy, has always loved writing short stories.

Do you have a personal connection with muscular dystrophy or related neuromuscular conditions? I don’t have any personal connections to muscular dystrophy other than knowing people who are living and coping with the condition.

Lord Attenborough has always been passionate about fundraising for research into Duchenne muscular dystrophy and a key legacy of his work is the current progress with exon skipping technology. Why do you think it’s important to support the Attenborough Fellowship right now and what would you say to would-be supporters? Without research there is no knowledge, and without knowledge there will never be a cure. We need to keep at the forefront of scientific medical research and the Richard Attenborough Fellowship Fund will help ensure that happens. Lord Attenborough, Honorary Life President of the Muscular Dystrophy Campaign and world-renowned actor and director, has been closely connected with our charity since the 1960s. The Richard Attenborough Fellowship Fund offers Fellowships for clinical research and training at leading UK neuromuscular centres in Newcastle, Oxford and London. Please consider donating online or, if you’d like to make a considerable contribution to this Fund or find out more, please contact Claire Gage on 0207 803 4861 or c.gage@muscular-dystrophy.org

When his mum, Sue, picked up a leaflet a few years ago, she decided to apply to Dreams Come True on Sam’s behalf. His dream came true when his book, T for Terrorism and other stories, was published in April. “The charity, and particularly Wendy Gray, went the extra mile for Sam, and made sure he was involved in every step of the book design process,” said Sue. Sam is studying history, government and politics for his A levels, and wants to go to university to study history.

For full details phone: 0843 308 4144

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The beautiful powerchair game The Wheelchair Football Association (WFA) has started its new Inclusive Sport project with the recruitment of three new regional development officers. Funded by Sport England’s Inclusive Sport programme and supported by the Muscular Dystrophy Campaign, it will provide hundreds of opportunities for new players to experience powerchair football over the next three years.

he North officer, Kat Easson is hosted by the Percy Hedley Sports Academy in Newcastle and she will cover the North West and North East. Anthony Nweke is the Midlands officer, covering the West and East Midlands and is hosted by Nottingham Forest Football in the Community. Adam McEvoy is the South officer, covering the South East, South West, London and the East, and he is hosted by Valence School in Kent. Working in close co-operation with the charity, the FA, Davies Sports and Village Hotels, the team will work to ensure a lasting legacy for the sport of powerchair football. Sam Bull, National Development Manager for the WFA, believes this project shows just how far the sport has grown over the past few years. “With the increase in the number of powerchair football clubs, we have shown the demand for our sport. We now have a great opportunity to raise the profile of powerchair football and recruit new players to continue our growth and development. We are lucky to work with some great partners who have enabled us to achieve so much!” And as another fantastic powerchair football season draws to a close, the standard of play continues to grow. In Premiership news, Aspire PFC’s dominance has finally come to an end after six years of league success. Northern Thunder has run away with the title, lasting the entire season unbeaten, and more impressively, not conceding a single goal throughout! In the Championship, Brighton and Hove Albion PFC and Reading PFC have been promoted to the Premiership after finishing first and second respectively.

Join the team in Milton Keynes Alun Thomas has always loved sport. Cycling, swimming, badminton and football coaching have been part of his life, so when he was diagnosed with limb girdle muscular dystrophy 2i in 1995, he was forced to re-evaluate his lifestyle. Alun steadily got slower until in 2007 he gave up all sport, and in 2010 he started to use a powerchair. Determined to remain active and social, Alun stumbled across MK Dons Powerchair Football team in Milton Keynes. “After attending a training session, I was hooked! So much so, I am now the Team Manager. The sport has opened up so many opportunities, given me the chance to socialise with amazing people, travel the country for matches and allowed me to focus on sport again – something which was so integral to my life before my diagnosis.” MK Dons play in the WFA Championship League, and all ages and abilities are welcome. The team trains every Saturday at Bletchley Leisure Centre. If you’d like to find out more, do call Alun on 07977 938596.

Where would we be without you?

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

Hello, I’m Abbi. I’m four. I like school. My muscles are poorly, so sometimes I have to use my wheelchair.

bbi has a rare muscle-wasting condition called Ullrich congenital muscular dystrophy. She can walk but she cannot jump and she battles to get up after sitting. Sometimes even a strong gust of wind could knock Abbi’s frail little body over. Her muscles will weaken and waste over time and she will most likely use a wheelchair fulltime through her teen years. And she’ll struggle to breathe unaided. The Muscular Dystrophy Campaign has given Abbi’s mum and dad emotional and practical support, as well as information about Abbi’s condition. The charity funds pioneering research into muscular dystrophy and other related neuromuscular conditions. Abbi’s family hopes that one day there will be an effective treatment – or indeed a cure – for her condition and others like hers. We have been able to do this work because people like you support us with voluntary donations and gifts in your Will. You don’t have to be wealthy to leave a gift to us in your Will. When you remember the Muscular Dystrophy Campaign in your Will, you are helping to build a future for children like Abbi. Today. None of this work, now or in the future, is possible without you. For more information on legacies and to request an information booklet, please get in touch with Sarah Greenwood: t: 020 7803 4834 e: s.greenwood@muscular-dystrophy.org w: www.muscular-dystrophy.org/legacy

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