magazine
Target MD November 2011
A story of two sisters
Leisure activities Sports and accessible travel All inside
Sharing a rare diagnosis must read
Powerchair football join in
World Cup hopefuls
Campaign success Campaigning news • New inquiry in Northern Ireland • Trailblazers documentary film • Scotland’s Kite Awards
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From the CEO’s desk Despite the difficult economic times, we are achieving significant progress in our fight against muscular dystrophy and the related neuromuscular conditions. We have won the national Charity Times 2011 Award as the Campaigning Charity of the Year. This is in recognition of the work of our determined and often outspoken volunteers working in the Muscle Groups and on campaigns, talking to MPs and challenging NHS chiefs, to ensure that health care is improved for children and adults with one of our conditions. Beating off the competition from many larger organisations, we showed that we are one of the most effective and hard-working charities in the country. Second, our vital support for research has led to huge progress in identifying the causes of many forms of muscular dystrophy. More importantly, we are supporting new world-class research projects and backing clinical trials with patients, which will potentially lead to the first treatments, with the initial focus on Duchenne muscular dystrophy. We are closing in on our target of beating muscular dystrophy. Third, our advocacy service is already helping many families and individuals to secure the support needed to enable them to live fulfilling lives and to retain as much independence as possible. The advocacy team has taken on local councils and primary care trusts to challenge decisions that have had devastating effects on individuals and families. The team is skilled and determined and has succeeded in generating more than £215,000 since April in benefits and support packages. None of this progress could have been achieved without the support and involvement of so many people across the whole country. Now is the time to renew our commitment and increase the drive to beat muscular dystrophy and the related conditions. Every penny and every pound raised will be used wisely and well and the energy of our members and supporters will help us to make further progress. Thank you for your continued support. The fight goes on.
Robert Meadowcroft Chief Executive
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Up and away
Srin’s been jetting around the world
Contents 09
09
16
16
Stevie’s a powerchair football star
19
Chloe tosses the coin at Wimbledon
12
News
Fighting for the rights of our supporters all around the UK
14
Kite Award winners - honouring our supporters at the Scottish Conference
25
Trailblazers on film
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Features
A tale of two sisters sharing a very rare diagnosis meet Jane and Tracy
Regular
Letters - write and tell us what you think
20
Your stories
21
Above and beyond - supporters raising funds for us
www.muscular-dystrophy.org
Hello, I’m pleased to introduce myself to you and you to our new-look magazine. I’m the editor of Target MD and the Publications and Communications Manager at the Muscular Dystrophy Campaign. Thank you to all of you – over 300 of you – who responded to our recent survey about Target MD. We have taken your thoughts and suggestions and taken time to create this new generation of a well-loved magazine, weaving through it the brightness and fresh perspective that you, its readers, wanted to see. One of the most prominent requests we received was for ‘more research’, so we have created a package of information that will come to you quarterly: Target Research will be enclosed in every issue of this magazine, four times a year. Also enclosed is a regional fundraising newsletter from your area, which gives each Volunteer Fundraising Manager the opportunity to share more targeted information and news with supporters and volunteers in their own areas. In addition to feature articles, we’ll continue to bring you news and updates from all aspects of the charity’s work across the UK. You’ll see how we integrate all the different ways we communicate and we welcome contributions from readers via post, email, Twitter, Facebook and our online forums. If cyberspace is a bit ‘out there’ for you, that’s OK; the magazine is not going to disappear. However, if you are up for it, why not ask someone to show you one of the links mentioned in the magazine? Go on – give it a try! I trust you will enjoy reading about the feisty work of this charity and its amazing supporters. I’d love to hear from you.
The magazine for supporters of the Muscular Dystrophy Campaign , written and produced entirely in-house.
Ruth Martin
Editor Ruth Martin Art director Deborah Waters
Editor
targetmd@muscular-dystrophy.org
t: 020 7803 4836 e: r.martin@muscular-dystrophy.org tw: @RuthWriter
Muscular Dystrophy Campaign 61 Southwark Street London SE1 0HL t: 020 7803 4800 e: hello@muscular-dystrophy.org w: www.muscular-dystrophy.org Disclaimer While every effort has been made to ensure the information contained within TargetMD is accurate, Muscular Dystrophy Campaign accepts no responsibility or liability where errors or omissions are made. The Muscular Dystrophy Campaign does not necessarily endorse the products advertised and no responsibility can be accepted for claims made by the advertisers. The views expressed in this magazine are not necessarily those of the charity. ISSN 1663-4538
Registered Charity No. 205395 and Registered Scottish Charity No. SC039445 Printed on PEFC paper, produced at a mill that is certified with the ISO14001 environmental management standard Enclosed into a bio-degradeable polybag
Interact with us and more than 7,300 fans on our Facebook page at: www.facebook.com/musculardystrophycampaign For up-to-the-minute updates on all areas of our work, follow us on Twitter @TargetMD
About the Muscular Dystrophy Campaign
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscular dystrophy and related conditions. We are dedicated to finding treatments and cures and improving the lives of the 70,000 adults and children affected by the conditions. We focus on funding world-class research, providing practical information, advice and support, campaigning to bring about change and raise awareness, awarding grants towards the cost of specialist equipment and providing specialist education and development for health professionals.
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Letters What do you think? Write to us...
‘THANK YOU’ After participating in the recent survey for the Target MD magazine and commenting how I like reading others people’s stories and experiences, I felt I needed, for the first time, to write one of my own.
Great news Great news about the clinical trials; this is wonderful for the families living with Duchenne. I was wondering as a parent of a daughter with merosin deficient congenital muscular dystrophy, could these trials lead to treating other forms of muscular dystrophy? Sharon Mills via email (Read how we responded to Sharon’s and other families’ queries, on p22.)
My sister Tracy aged 44 and I aged 42 are both manifesting carriers of Duchenne muscular dystrophy and have been diagnosed since 1993. This year was the Oxford Town and Gown 30th year of the 10k run and my husband Ricky and his son Ryan announced they were going to take part. They worked very hard training for this, pounding the streets of our town where we live, Brackley. My sister and I would like to say a personal ‘THANK YOU’ to Ricky and Ryan and congratulations for raising £710.50 for the Muscular Dystrophy Campaign and thank you to all the organisers and helpers of the Oxford Town and Gown 10k 2011. See you again next year to show our support and thanks. Regards Jane Bloxham Via email (Read Jane and Tracy’s story on p 9.)
A wonderful wife Dear Sir or Madam rkable life’ [in I read with interest your article ‘A mother’s rema ular dystrophy Campaign, Summer 2011]. My wife, Jean, had musc and I was just 17. most of her life. I met Jean when she was just 16 the sooner a cure can Muscular dystrophy is a terrible complaint and had a lovely life with be found for it, the better. From a husband who a wonderful caring wife. Yours faithfully Mr J A Moore (letter by post) (Read Mr Moore’s story about his wife, Jean, on p20.)
Keep in touch with us... We’d love to hear from you and would love to fill this page with your letters. Send us your good news stories or your frustrations as well as any news you’d like to share with our readers. Here’s how you can get in touch with us: tweet us, send a comment on our Facebook page or TalkMD, or write to the Editor, Ruth Martin, at 61 Southwark Street, London SE1 0HL or at targetmd@muscular-dystrophy.org or tweet her @RuthWriter
Looking ahead Join us for the next edition of Target MD, due out in January 2012. In the wintry cold, we’ll be focusing on education, with our usual news, features and updates and again with you, our supporters, in the spotlight. As you know, people with muscular dystrophy and related conditions, together with their families and carers, are at the heart of everything we do.
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Two in a
million
sisters O
Jane wrote to us, following the Oxford Town & Gown 10k in May (see letter on page 6). We arranged to go out to Brackley in Northamptonshire in September to meet Jane and her sister, Tracy, and hear their story (pictured below: Jane in pink, Tracy in purple).
ne is blonde, one is brunette. One is always late, one is always punctual. One is neat, the other not so much. One is reticent, one is open. One is soft and the other – in her own words – ‘hard as nails’. They really are opposites. Typical sisters, you might think. For all their contrasting traits, however, one thing binds these two lovely siblings together: they are both manifesting carriers of Duchenne muscular dystrophy. How typical is that, you might ask? About two in a million kind of typical.
Meet Tracy McMahon (44) of Chipping Warden in Oxfordshire and Jane Bloxham (42) of Brackley in Northamptonshire. Born and raised on a farm in King’s Sutton, the two sisters have never really moved too far from their home town. They both started working in a factory after leaving school; Tracy worked in a factory sewing underwear, and Jane said she ‘inherited the chicken factory genes’ and followed her mother’s pathway to work in the factory down the road. Jane still works there today, some 25 years later; now in an upstairs office, in the payroll department. Tracy too moved from factory to office, after completing her business administration studies, but is no longer able to go out to work. Both got married quite young and, at
www.muscular-dystrophy.org
the age of 23, Tracy gave birth to a lovely, healthy little boy, Liam. As Liam grew, Tracy found it more and more difficult to lift him. She also struggled a lot with back pain and had some difficulty walking. It took an astute consultant at a sports’ injury clinic to start raising alarm bells and, after a string of tests and a muscle biopsy, Tracy - and then Jane was diagnosed as a manifesting carrier of Duchenne muscular dystrophy, and soon after Jane received the same diagnosis. She was 26 and Jane was 24. The doctors think that their symptoms point to their being manifesting carriers of Duchenne muscular dystrophy. However, as the genetic fault was never found, this could never be confirmed by a genetic diagnosis. Liam has no trace of Duchenne muscular dystrophy. And nor did Tracy and Jane’s younger brother, William. Through the tests, it was unclear where the gene had come from; either it had skipped a few generations or it appeared spontaneously in the two sisters. “The doctors said to us, ‘If only your mum and dad had had two more daughters, then we could establish a pattern’ …,” said Jane. Tracy and Jane made contact with the Muscular Dystrophy Campaign as soon as they were diagnosed. The information and support they have received has been ‘amazing’ and has improved tremendously over the years. They also described the excellent back-up and support they received from neuromuscular care advisor, Jane Stein, who worked with them for over 18 years until she moved to the South West. The continuity of care, advice, equipment recommendations and general support Jane gave them was ‘absolutely marvellous’. “We also have two decent guys behind us. If it wasn’t for our husbands, Kevin and Ricky, we couldn’t deal with half of this as we have,” said Jane. Jane tells her story “When I was told I had muscular dystrophy, I just took it on the chin. There were a number of people in the room when I was told and I just said OK, I asked no questions and I went home,” Jane said.
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they found it difficult to set up and take down their stalls at the market, and so eventually decided to disband. They now get together once a year for Christmas dinners.
“The genetic consultant rang me that evening to say she was concerned at my reaction; I’d asked no questions, especially about the possibility of having children. I was really quite fine with that, as I’d actually never wanted to have children anyway,” Jane said. “With this new diagnosis, we both had to re-evaluate our lives. Tracy moved into a bungalow quite a few years ago, and I did the same about six years ago. I have watched all that Tracy has had to do and how she has adapted, and I learn from her, as I know I will need to do the same too,” she said. The sisters’ stories differ from each other, reflecting their contrasting personalities. Tracy’s story Tracy’s condition has progressed more quickly than Jane’s. Tracy started to use a manual wheelchair part-time five years after diagnosis, and has used an electric wheelchair for the past six years. Jane is still ambulant, although for the past nine years she has also used a manual wheelchair. Soon after her diagnosis, Tracy met Teresa, who had limb girdle muscular dystrophy. They met when they travelled to Lourdes together, shared their stories and soon discovered they had so much in common. “Theresa and I started a support group for anyone with a disability, or an illness, in our area,” said Tracy. The group would meet regularly and go on outings, go to conferences, have hydrotherapy sessions at a local school pool, make items to sell at a local craft market. They worked hard to raise funds for the Muscular Dystrophy Campaign. The group met for about 12 years, but as each person’s condition progressed,
“For myself, I find routine to be so important in my life. I go to gym three times a week, which I really love. I have found an excellent gym, where I can go and keep my muscles working and stretching. If I didn’t have my carer to help me, I could book a personal trainer for an hour at a time, any time, to help me with the equipment, and I feel so much better for the regular exercise. It also helps to keep the weight off,” Tracy said. “I love to keep busy and I go to watercolour painting classes with my husband, and really love that. I also do some cross-stitch and knitting in my spare time. There is so much to do out there, and I find things that interest me that I can manage, and fill my days that way,” she said. Jane works full-time and, while she was determined to work until she was 50, she has now set her sights on 45. She gets herself up, dressed, drives herself the mile to work, parks her car and does her day’s work. Five days a week. This long working week leaves her depleted and, when she gets home, often needing – as
she describes it – ‘some Jesus time’ where she lies, prone and open-armed on her bed, to recover. “If I can keep working as long as possible – using my mind and not my muscles – that really helps me,” Jane said. Although ‘Derek’ goes with Jane most places (Derek is the name she’s given her wheelchair), Jane is mindful that the time is approaching when she will need more equipment in her life to help her manage. No doubt the new equipment will have names too! The two sisters look at each other often, tease each other mercilessly, laugh generously and openly acknowledge each other’s strengths. And weaknesses. Jane summed the two of them up beautifully:
“We’re like chalk and cheese. Tracy has muscular dystrophy and lives it every day of her life. I have muscular dystrophy, it’s in my head and I like to leave it there.” “This interview was Jane’s first foray into speaking so openly about her muscular dystrophy.” Tracy watched her with gigantic big sister pride: “This is huge. I’m so proud of her. This is her coming out to the rest of the world.”
Howlers
Because both of the sisters have worked and received reasonable wages, they have had to save for and do their own home adaptations. They have learnt from each other as they’ve gone along, and both have what they call their favourite howlers.
Jane: “we built a ramp from the back of the bungalow into our garden, and the gradient is way too steep. Tracy can manage to get up the ramp in her powered wheelchair, but we will have to re-do it.” Tracy: “when we adapted our bathroom and created a wet room, we decided I needed a dryer. By the time it was installed, I was no longer able to use it.” Equipment/gadgets to make their lives easier: • front-fastening bras • ‘bingo wings’ – silicone strap holders that bra straps slide into, to hold the bra straps in place and stop them from sliding off your shoulders • plug-in heated blanket – Jane sits on the sofa with one of these behind her back every evening. She swears by it, and says it accounts for no back pain for years • foam roller to slip behind your back to support you in your office chair • kettle tipper • electric riser chair • shopping trolley – light, modern and easy to move.
www.muscular-dystrophy.org
The Oxford Town & Gown 10k (Pictured right: Tracy, Ricky, Ryan and Jane at the Oxford Town & Gown 10k) Jane’s husband, Ricky, was soon to turn 50. He decided it would be a good idea to celebrate such a significant birthday by running in the Oxford Town & Gown 10k, with his son, Ryan. They decided to do just that, and began a serious training regime, which saw them out running every day, tracking and planning their routes, and building up their fitness for the big day in May. For Jane, it was a big event too. “For the first time, I felt I was contributing something to my own charity. I went round at work getting sponsorship for Ricky and, for the first time, people at work found out what exactly was wrong with me. I have a disabled parking space, but no-one really knew why. “We got to the race venue really early, and soon realised that the whole race day was for the Muscular Dystrophy Campaign, and everyone running was doing so to raise funds for people like Tracy and me. It was amazing,” Jane said. “As we watched the race, I had to pace myself with clapping because my arms were getting tired! My mum was cheering everyone on like she was at a school sports day, and as the runners started coming in, it was so wonderful and emotional at the same time. I had never experienced anything like that before; the whole day was just for our charity, the Muscular Dystrophy Campaign, and it was all happening in the city where our main hospital is. “I don’t usually show my feelings at all, but I had to put my sunglasses on that day, as I really felt like I was welling up watching the runners coming in. Ricky, too, said he had to take a minute to compose himself after his race, as he realised the significance of what he’d just done,” Jane said. “It was an overwhelming day for all of us, and Ricky and Ryan raised more than £750 for our charity,” Jane said. “The Oxford Town & Gown day was finally my acceptance of having muscular dystrophy.”
ion
Jane and Tracy’s condit
Manifesting carriers of Duchenne muscular dystrophy Duchenne muscular dystrophy is caused by a fault in the gene that is responsible for producing dystrophin – a protein essential for normal muscle function. The dystrophin gene is on the X chromosome. Females have two X chromosomes (XX) but males only one (XY); it is the Y chromosome that makes them male. A female may have the faulty dystrophin gene on one X chromosome, but will have a normal gene on the other chromosome – that produces sufficient dystrophin for normal muscle function in most women. A male with the faulty gene on his one X chromosome cannot produce dystrophin, and the consequence is that he has Duchenne muscular dystrophy. A typical picture is therefore a boy with Duchenne muscular dystrophy, whose mother has the faulty gene on one of her X chromosomes; she is called a carrier. In about 10 percent of female carriers there may in fact be some evidence of muscle involvement, but the woman may not be aware of it. A common observation is that female carriers may have larger than normal
calf muscles (but note that most women with large calves aren’t carriers!). In about five percent of carriers, careful testing may show mild weakness around the shoulders and hips. In a very small proportion of carriers (fewer than one percent), the weakness may be much more pronounced, and may lead to significant walking difficulties and the 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
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Invest to Save in Scotland
As part of our Invest to Save campaign, we launched a new Scottish version of the report at the Scottish Parliament in late September.
News Here we bring you news, from all around the UK, of our work in leading the fight against muscular dystrophy and related conditions.
Invest to Save: improving services and reducing costs in Scotland followed an investigation into the cost benefit of improving neuromuscular services to prevent emergency admissions to hospital for people with muscular dystrophy and related conditions in Scotland. Mark Chapman (pictured below left) from Edinburgh, who has Duchenne muscular dystrophy and is Chair of our Scotland Muscle Group, added his weight to the campaign. For people with his condition, he said that every day counts. “Time is just so precious for people with Duchenne. Your health can change so much in such a short time and every family will tell you that every day counts. The right help can make a huge difference to the length and quality of people’s lives, and this is why care advisor posts are so important. We simply cannot afford to wait around for these funding decisions to be made,” he said.
Over 40 of our supporters (pictured above) from across Scotland joined us, and we secured valuable cross-party support for the campaign from 20 MSPs. Jackie Baillie MSP, Chair of the Cross Party Group on Muscular Dystrophy in the Scottish Parliament, hosted the event and tabled a motion in the Scottish Parliament to add weight to the campaign.
On the web www.muscular-dystrophy.org/itsscotland Read our hard-hitting reports at: www.muscular-dystrophy.org/campaigns
Campaigners called on the Scottish government to build on existing specialist services which could result in fewer unplanned hospital admissions as well as savings. The Muscular Dystrophy Campaign continues to press for all the recommendations in the Cross Party Group’s Mackie Report, launched last year, to be implemented.
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New inquiry begins in Northern Ireland A major inquiry into neuromuscular services was announced at the launch of the new All Party Group on Muscular Dystrophy in the Northern Ireland Assembly at the end of September. Members of the Legislative Assembly (MLAs), along with the Health Minister, heard shocking experiences of access to services from members of the Muscular Dystrophy Campaign’s new Northern Ireland Muscle Group and Northern Ireland Trailblazers. The new All Party Group will be chaired by Conall McDevitt MLA, a committed supporter of people living with muscle disease. “I am looking forward to leading this new group as we undertake a thorough inquiry into service provision on behalf of people with muscle-wasting diseases across Northern Ireland. With all we have heard today, this All Party Group is determined to establish the improvements required to increase
the quality of care for these vulnerable families,” Conall said. With organisational support from the Muscular Dystrophy Campaign, the All Party Group will work with families from across Northern Ireland and MLAs to undertake this groundbreaking inquiry to establish the urgently required service improvements for people living with muscle disease. Northern Ireland Executive Health Minister, Edwin Poots MLA, will receive the All Party Group’s report when it is launched next year. This is what he had to say: “I welcome the opportunity to lend my support to the new All Party Group, which I hope will be a great advocate at the Assembly on behalf of those with muscular dystrophy.” The Minister also acknowledged the difficulties faced by people living with muscular dystrophy and the impact the condition has on their daily lives, and thanked those in attendance for sharing their personal experiences.
Hospitals in focus
A worrying ignorance of neuromuscular conditions among hospital staff often means that patients experience poor care. Our recently launched report, Hospitals in focus: health care not health risk, based on our survey of 500 patients, showed as much. Lisa Hill was immobilised to treat a broken bone. This almost had catastrophic consequences. “During my last visit to hospital, I was treated by medical staff who did not understand my condition, and as a result I now need to use a wheelchair permanently. I had broken my leg and guidelines for people with muscular dystrophy are that prolonged immobilisation should be avoided. In my case I was placed in a full leg cast for 12 weeks.” Experiences like Lisa’s are unacceptable and not uncommon and our report makes clear recommendations to bring about necessary change. One such recommendation is to establish clinical networks across the country, to improve care for patients with muscle disease or a related neuromuscular condition during their stays in hospital. Nic Bungay, Director of Care, Support and Campaigns at the Muscular Dystrophy Campaign said, “We’ve seen the enormous difference clinical networks can make to people’s experiences of hospital care. There is one such network in place in the South West, and the benefit of improved co-ordination between specialists for patients with these rare conditions is clear.” Our report underlines just why it’s important to establish similar networks in the rest of the country. While the NHS is reforming, we believe the opportunity to do so is now. By not taking these necessary steps, the NHS is putting the lives of vulnerable families at risk.
Pictured left to right: Robert Meadowcroft, CEO of the Muscular Dystrophy Campaign, Health Minister Edwin Poots MLA, Conall McDevitt MLA, Robin Swann MLA, Sean Fitzsimons, Roy Beggs MLA, Ian McCrea MLA and (front) Michaela Hollywood
On the web Read our hard-hitting reports at: www.muscular-dystrophy.org/campaigns www.muscular-dystrophy.org/ healthcarenothealthrisk
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Steps forward Campaigning Team of the Year
The impact and effectiveness of the work of the Muscular Dystrophy Campaign was recognised with the national ‘Campaigning Team of the Year’ award at the recent Charity Times Awards 2011. Winning this award is an emphatic acknowledgement of the tireless dedication and commitment of our supporters across the country in campaigning for service improvements. With over 1,000 Muscle Group members across the UK and 31 Care Advisors funded within the NHS, the campaign for better services goes from strength to strength.
Our conferences
Around 400 supporters participated in our recent Scottish and national conferences. Robbie Warner was re-elected Chairman of the Scottish Council, and two trustees - Professor Peter Goodfellow and Mr Nicholas Overall - were re-elected, while trustee Professor John Harris retired from the Board of Trustees. Read more about the conferences in the next edition of Target MD.
Research and the Health and Social Care Bill
The Muscular Dystrophy Campaign is voicing its support of the proposed research-focused amendments to the Health and Social Care Bill as it enters the Committee Stage in the House of Lords. We strongly support the proposed amendments because embedding research as a priority into the NHS is crucial for bringing new treatments to patients quickly.
New clinical trial for congenital muscular dystrophy
A clinical trial to test a drug called omigapil in Ullrich congenital muscular dystrophy, Bethlem myopathy and merosin-deficient congenital muscular dystrophy (MDC1A) is being planned for 2012. A small number of patients will participate in this trial which is proposed to be conducted at two study sites, one in the UK: Great Ormond Street Hospital (London) and the other in the USA: National Institute of Neurological Disorders and Stroke/National Institute of Health (Bethesda, Maryland). Read more about these clinical trials on the website.
Flying high in Scotland – the Kite Awards
At our recent Scottish Conference in Glasgow, we paid tribute to our supporters whose hard work and dedication to our charity have contributed significantly to our fight against muscular dystrophy and related conditions. Thank you to all of our supporters, and congratulations to our Kite Award winners (pictured below).
Lifetime Commitment
Volunteer of the Year
Reg Mackie The late Reg Mackie was a founding member and first Chairman of the Muscular Dystrophy Campaign’s Scottish Council from 1975 to 1986. Reg made a pledge to his son, Alex, that as long as he was able he would raise money for us. Alex had muscular dystrophy and passed away in 1970, and Reg continued to work tirelessly in support of the charity. His selfless commitment was recognised when the Cross Party Group on Muscular Dystrophy named their report into specialist services in Scotland The Mackie Report. Alan Noble, a Vice President of the charity, paid a moving and heartfelt tribute to his longstanding friend as he presented the Lifetime Commitment Award, which was accepted by Reg’s wife, Jean.
Rebecca Wood Rebecca became involved with the Muscular Dystrophy Campaign a few years ago, after applying for a role as Volunteer Events Manager through Glasgow Caledonian University. She was one of the first people recruited to what was a new partnership with the university. At the end of the first year, she helped us run the programme as Senior Volunteer Event Manager, mentoring the new volunteers. Not only has she become more involved with our charity, but she has also worked hard to deliver our events income this year, by helping at bucket collections, volunteering at the Question of Support, taking part in the Forth Rail Bridge Abseil and helping out at our 2011 Scottish Conference.
Community Champion
Catherine Gillies Catherine, from Glasgow, was one of the first Scottish Trailblazers and has been involved in all six of the Trailblazers national campaigns. She also played a leading role in the Scottish national report launched earlier this year and gave fantastic radio and TV interviews to ensure the message of equal access for disabled people was heard far and wide. Catherine is a tenacious campaigner with a particular interest in making Glasgow’s music venues more accessible. Through her work with the Trailblazers she has helped in the cause to improve access for all music lovers in Scotland.
Glasgow Freight Club This award went to the Glasgow Freight Club, and was collected by committee members Fraser Russell, John McCormick and Hugh Campbell. In 2010, the Muscular Dystrophy Campaign was chosen as beneficiary of the Glasgow Freight Club’s annual fundraising dinner. On the night, Eilean Stewart shared her story of living with limb girdle muscular dystrophy, reducing more than one member of the 450-strong audience to tears. With funds raised on the night, extra donations, topping up from Club funds, a volunteering scheme with matched funding, the event raised a staggering £23,400 for the Muscular Dystrophy Campaign.
Campaigner of the Year
In memoriam
A special way to remember friends and loved ones A donation to the Muscular Dystrophy Campaign is a very special way to remember and honour the life of a relative or friend. Your donation will be used to give hope and support to all those families living with muscular dystrophy and related conditions. If you’d like to talk to someone about In Memoriam giving, please do get in touch with Sarah Greenwood on 020 7803 4834 or email her at s.greenwood@muscular-dystrophy.org Registered Charity No. 205395 and Registered Scottish Charity No. SC039445
Get in touch As an open and listening charity, the Muscular Dystrophy Campaign is interested both to hear from you and to offer you relevant information and support. If you’d like further information about any of the topics we’ve written about in this edition of Target MD, or you’d like to get involved in any of the activities mentioned, do get in touch. We’d love to hear from you.
Choice of 100 + vehicles
If you’d like to organise your own fundraising event, or pick up a fundraising pack filled with ideas to raise funds for the Muscular Dystrophy Campaign, please contact our volunteer fundraising team on 0845 872 9058 or email volunteerfundraising@muscular-dystrophy.org If you’d like to get involved in any of our campaigns, do get in touch with us on 020 7803 4847 or campaigns@muscular-dystrophy.org If you have any questions about accessible trips away, please give us a call on 0800 652 6352 or email info@muscular-dystrophy.org If you’d like to join the Trailblazers’ fight to ensure cinema access for all, please contact Bobby Ancil at 020 7803 4807 or b.ancil@muscular-dystrophy.org
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Stevie’s on
S
tevie Pearson is a Trailblazer (part of a network of young campaigners, within the Muscular Dystrophy Campaign, who speak out for the rights of young disabled people) and a media spokesperson for the Muscular Dystrophy Campaign. He was involved in the recent Trailblazers survey into access to cinemas and issues faced by disabled movie-goers.
When Stevie (pictured fourth from right with the England Powerchair Football squad) started kicking a football around with friends, at the age of six, little did he know that he’d find a passion and raw talent that would lead him to national prominence.
matches in Nottingham and so far the new season – which began in early September – is going swimmingly: four wins out of four. They have finished top of the league for five years in a row, and look set for a sixth. He also plays in the Wheelchair Football Association Cup, which Aspire has won for two years in a row, and the Powerchair European League with teams from England, France, Belgium and Denmark. Aspire just missed out on the semi-final in the last season, but next season will be fighting to get through.
Not an untidy track record for twelve years.
In 2007, when he was 14, Stevie represented England in the first World Cup in Japan, organised by FIPFA (Federation Internationale de Powerchair Football Association). England finished fifth out of the eight teams that took part. The 2011 event in November in France includes a competitive line-up of ten countries: Japan, Portugal, Belgium, Australia, Switzerland, England, France, Canada, Ireland and defending champions, the USA.
Stevie, 18, trains once a week at the Woodside Leisure Centre in Watford, along with about 30 other players, both male and female. His local premier league side, Aspire, plays league
In their preparations for this year’s FIPFA World Cup, the England Powerchair Football squad got to go to Wembley in June, where they met the England first team players. Stevie was entranced.
Not only did he represent England at the inaugural powerchair football World Cup in 2007 and get selected again to play in the second World Cup in Paris in November 2011, but his local league side has held the English premiership title for five years in a row.
“Our manager gave us each an England shirt with our name and number on the back. This was a great surprise as we didn’t know anything about it,” Stevie said. “Each England player came up to us and signed our England shirts, which was brilliant. We watched them training and then afterwards the England manager, Fabio Capello, came to speak to each of us individually and shake our hands. We went for lunch in the away changing rooms, and this was an experience I’ll never forget. It was a fantastic day,” he said. The England powerchair squad was also given a welcome boost of £25,000 towards their World Cup experience, presented to them by Fabio Capello and FA Chairman, David Bernstein. “I’m delighted that this grant will help England compete at an international tournament and help raise the profile of powerchair football in this country and around the world,” David Bernstein said. Stevie echoed this sentiment. “We always want to tell more people about powerchair football, and we’re always looking for new players,” he said. “I’d encourage any boys or girls who are
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the ball
interested in powerchair football to visit the Wheelchair Football Association website to find out where their nearest club is and to go and pay them a visit. Everyone is welcome,” he said. “If you love football like I do, powerchair football is the sport for you. It’s a really competitive sport and many people with all kinds of disability can play,” said Stevie. Stevie was diagnosed with Duchenne muscular dystrophy when he was three and a half years old. At the age of nine, he started to wear callipers and since the age of 11 he’s used a powered wheelchair. He has just finished school, where his A level results qualified him for entry to university in Hertfordshire to study media production. He has his driver’s licence and his own adapted car. With football practice every week, a World Cup to play for and a university career to begin, it seems there’s no stopping Stevie. “The most exciting thing about our visit to Wembley was having lunch in the away changing room. It was amazing, and made us feel like real footballers,” Stevie said. You are a real footballer, Stevie. You are.
Stevie’s condition
Duchenne muscular dystrophy This is one of more than 20 types of muscular dystrophy, all of which are caused by faults in genes (the units of inheritance that parents pass on to their children), and they cause progressive muscle weakness because muscle cells break down and are gradually lost. The Duchenne type affects only boys (with extremely rare exceptions), and a problem in this gene is known to result in a defect in a single important protein in muscle fibres called dystrophin. It is named after Dr Duchenne de Boulogne, who worked in Paris in the mid-19th century and was one of the first people to study the muscular dystrophies. About 100 boys with Duchenne muscular dystrophy are born in the UK each year. As far as is known, there are about 1,500 boys with the disease in the UK at any one time. The chance of having an affected child is about one in 3,500 male births.
On the web The Wheelchair Football Association. Find your nearest club www.thewfa.org.uk The powerchair football international federation. Read all about the World Cup 2011, as well as how the game works. www.fipfa.org Watch a video clip of the Powerchair Football World Cup 2007 in Japan at www.youtube.com/watch?v=PbsvFldfTFU
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About powerchair football
Hello from Target Research
Powerchair football, also known as power soccer is a competitive team sport for people with disabilities who use power wheelchairs. The game is played in a gymnasium on a regulation basketball court. Two teams of four players use powerchairs equipped with footguards to attack, defend and spin-kick a 13-inch (330 mm) football in an attempt to score goals. The sport was first played in France in the 1970s and FIPFA was established in 2006. The game is played in two 20-minute periods, on a standard-sized basketball court. Each team can have four players on the court at a time, including the goalkeeper. Only a player and an opponent are allowed within three metres of the ball when it is in play, and the defending team is only allowed two players in their own goal area. Intentionally striking or ramming another player may result in a penalty. (Wikipedia: http://en.wikipedia.org/wiki/Powerchair_Football)
Mutual inspiration Whenever there’s an opportunity for our supporters to meet our scientists and find out about the latest research breakthroughs, we know there’ll be plenty of interaction.
Our research reception in June at the Academy of Sciences in London’s Portland Road, was no exception. Hosted by Dr Marita Pohlschmidt, our Director of Research, the purpose of the evening was to share the latest information about current research projects that we fund, for people who have a particular interest in research. We were extremely lucky to have been joined on the evening by Professor Dame Kay Davies, who spoke of her groundbreaking and internationallyacclaimed research into treatments for Duchenne muscular dystrophy.
Professor Davies was joined by Professor Darren Monkton from the University of Glasgow who spoke about his research into myotonic dystrophy and unstable DNA, and Dr Reghan Foley (pictured below) spoke of her work at the University College London, preparing for clinical trials in the congenital muscular dystrophies. After the talks, guests had the opportunity to speak to the researchers and hear more about their work in shaping the neuromuscular research arena, not only in the UK but internationally too. Watch our website for news of next year’s event. If you’d like to find out more, contact Anna Porcherot on 020 7803 2826 or email her at a.porcherot@muscular-dystrophy.org
Tucked inside this issue of Target MD, you’ll find the new-look Target Research magazine. Research remains a key focus for the charity and we are really pleased that our magazine, dedicated to neuromuscular research, will now be published four times a year alongside Target MD. It has been an exciting few months for neuromuscular research. Many of you may have seen news of the results of the UK exon skipping clinical trial for Duchenne muscular dystrophy, in the media. You can find out more about this news inside Target Research and answers to some of the questions you may have, such as, what does this mean for other conditions? Further improvements to exon skipping technology may be needed to gain an optimal result, so we continue to fund research in this area. Inside the magazine, we are also delighted to announce the details of nine cutting-edge new research projects we are funding that aim to improve diagnosis and develop treatments for a range of neuromuscular conditions. You will also find updates on the latest research news from the UK and around the world. Finally, you can read a moving interview about one woman with myotonic dystrophy’s quest to have children without passing on the condition. I hope you enjoy reading the new Target Research and that the more regular issues will keep you up to date with the fast-moving world of research.
Kristina Elvidge Editor, Target Research
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Chloe has a ball at Wimbledon If you watched the Wimbledon Ladies’ Singles Final this year, you might have noticed a few dazzling flashes on court before the game began: a flash of bright orange closely followed by a flash of a wondrous, dreamcome-true smile.
Chloe Ball-Hopkins, resplendent in Muscular Dystrophy Campaign orange, beamed as she tossed the coin to decide which of the two first-class players - Petra Kvitova or Maria Sharapova - would take the initial advantage in the clash. The 15-year-old tennis champion from Wotton-under-Edge, and bubbly ambassador for the Muscular Dystrophy Campaign, fulfilled her dream of meeting the best players in the world, when our President, Sue Barker MBE, invited her to do the coin-toss. At Wimbledon each year, the All England Lawn Tennis Club invites two charities to take on the coin-toss duties for the Ladies’ and Gentlemen’s Singles Finals in front of a worldwide audience of 375
million people. Chloe was delighted to be chosen to start the Ladies’ match as a representative of our charity. Chloe has a rare muscle-wasting disease called nemaline myopathy which causes weakness in the arm, leg, throat, and face muscles and she has used a wheelchair since primary school. An accomplished tennis player herself, Chloe described her experience at Wimbledon as “the opportunity of a lifetime”. “I really love tennis so this was like a dream come true. I can’t imagine my life without sport and hope to make a living doing it when I’m older. It was quite nerve-wracking but luckily everything went smoothly and it ended up being one of the best days of my life,” said Chloe. Last year, Chloe played in her first ever National Junior Wheelchair Tennis championships in Gloucester and, smashing all expectations, she reached the finals. She has her sights set on representing Great Britain at the Paralympics; let’s keep our eyes peeled for further flashes of orange.
Chloe’s condition
What is nemaline myopathy? Nemaline myopathies, (rod body myopathies) are a group of conditions known as congenital myopathies and they affect both males and females. In about 90 percent of cases, the condition becomes apparent at birth or early childhood, although in very rare cases, not until adulthood. Rod myopathies are estimated to affect one in 50,000 individuals and they are usually inherited, but sometimes not. There have been mutations identified in five different genes, which cause rod myopathies. The protein products of all these genes are involved in muscle tone and contraction.
On the web British Tennis LTA: www.lta.org.uk The Tennis Foundation: www.tennisfoundation.org.uk/ disabilitytennis/Wheelchair-Tennis/ International Tennis Federation: www.itftennis.com/wheelchair/tournaments/ juniorevents/
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Your stories A love of dancing Sometimes life does not always pan out how we think it will. That is definitely the case for one of our young supporters, Becky Morrish, whose life has ended up turning out quite differently from what was predicted when she was a baby. We asked Becky what it has been like for her living with her condition and what advice she would give to other families. My name is Becky and I was born with an uncommon illness called hypotonia. In normal people’s terms, all my muscles were weak and lax. When I was a baby, not many doctors back then would have noticed it, and the midwife said to my parents that I was just a lazy baby. The doctors said to my parents that it would be unlikely that I would be able to walk or talk and that it would be very unlikely that I would be able to go to mainstream school. I started speech therapy and physiotherapy; as I was very young I can’t remember much of this but to this day I still remember some sign language that I was taught. Also, when I had to return the physiotherapy shoes they gave me I cried as I had grown attached to them. After eight years of physiotherapy and speech therapy I was released and told I was fine! Now I’m 22 years old, I’ve been a dancer since I was five years old and I’m just about to set up my own dance school to teach kids plus I’m at university studying sports therapy. The only one thing that affects me to this day is my balance, which doesn’t stop me from dancing at all; the only thing it’s stopped me doing is riding a bike, due to falling off…a lot! If I could pass on any advice then it would be never to give up. If you want to do something then don’t let anyone stop you.
A wife’s remarkable life In the early hours of a December morning last year, Mr Jim Moore lost his beloved wife of over 58 years, Jean. Jim, who describes himself as ‘a husband who had a lovely life with a wonderful caring wife’, and his son and three daughters, were naturally distraught.
Childhood sweethearts, Jim and Jean fell in love and married when they were teenagers. At that stage, Jean was unaware of her unusual gait and, with further investigation, soon discovered she had muscular dystrophy. Her identical twin sister, Megan, was diagnosed with the same inherited condition. Jean always had a cheerful outlook on life, despite her progressive muscular dystrophy. At 57, Jim gave up work to become Jean’s full-time carer. “Jean was a very positive person and used to worry about how my caring for her would affect my health,” Jim said. “In the last few weeks of her life, she wasn’t even able to turn the pages of a newspaper; I would turn them for her. She was concerned about how I would manage after she was gone, and was trying to prepare me for being on my own.” At Jean’s 76th birthday last year, Jim said he realised she wouldn’t reach 77. Jean passed away in hospital later that year, with her family around her. The day after Jean passed away, Jim’s brother-in-law called him to say that Megan, too, had passed away on the same day as Jean. “Muscular dystrophy is terrible, and the sooner a cure can be found for it, the better,” Jim said. With that thought in mind, Jim kindly donated a gift to the Muscular Dystrophy Campaign in memory of his beloved wife. When he received his thank you letter, and a copy of the supporters’ magazine, Campaign, he read an article in there that prompted him to write and share his story with us.
If you’d like to share Your stories with us, please do get in touch with editor, Ruth Martin at: targetmd@muscular-dystrophy. org, or write to her at 61 Southwark Street, London SE1 0HL
On the web A love of dancing: www.bit.ly/pDG7oS Your stories: www.muscular-dystrophy.org/yourstories
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Supporters do the most amazing things ...
Riding like the wind
Tyre-less campaign towards the North Pole
Cycling buddies, Dan Flynn and Chris Flatt, took on a huge challenge earlier this year: an off-road end-to-end cycle challenge. They did this in late spring and raised more than £3,500 for us.
Have I really signed up for this? Geoff Major, a Yorkshire businessman, asks himself this question regularly as he trains for his eight day, 75-mile ski trek for charity, dragging his own 30kg sled of supplies. Oh, and by the way, he’ll be doing that at the North Pole in April next year.
Melancholy is incompatible with bicycling James E Starrs
Already keen cyclists, the two friends decided that as it was Dan’s 40th birthday, they should go big! They decided to cycle from John O’Groats to Lands End – offroad – in memory of Dan’s cousin, who died at the age of 17 from muscular dystrophy. Cycling over bridleways, byways and single tracks, they covered 1,200 miles and climbed 124,000 feet win just 12 days. “I did the ride in support of the Muscular Dystrophy Campaign, in memory of my cousin, Laurence. He, too, would have been 40 this year, so I thought it was quite fitting to choose this cause and it certainly gave me some added incentive to complete the challenge,” Dan said. “It was definitely the hardest challenge I have ever done but remembering the reason we were doing it kept us going. The weather was pretty awful, and at times we were facing winds of 80 to 100 mph!” Chris’ wife, Sarah arranged a coffee and cake stall in her front garden in June. Although she too did constant battle with the weather, she really enjoyed the event and added her £355 to the already impressive £3,200 the men had raised. Thanks to team Flatt and Flynn for your dedication to supporting the Muscular Dystrophy Campaign. You’ve certainly done Laurence proud.
Generously supporting the Muscular Dystrophy Campaign through this Major challenge, Geoff decided to embark on this adventure as, although he’s supported good causes and worthy individuals for many years, he wanted to do more than write a cheque. His goal is to raise £100,000 for his ten chosen charities, one of which the Muscular Dystrophy Campaign. Geoff trains by dragging a tyre or two around his local park in Leeds. The comments he attracts as he does this, are opportunities for Geoff to tell people about his unusual challenge. The reactions he gets not only fill his regular blog posts as he chronicles his journey towards April 2012, but often also add to his circle of supporters. Looking beyond 2012, his aim is to raise £20 million for good causes by the end of 2020. Now isn’t that perfect vision? Thank you so much, Geoff, for supporting us in this big and unique way. It’s the hard work and commitment of individuals like you that help us to continue our vital work.
Water lovely thing to do An inspirational young man recently made a big splash for his beloved uncle in support of the Muscular Dystrophy Campaign. Darren Scarlett, 11, has been fundraising for the Muscular Dystrophy Campaign to raise money in memory of his uncle after whom he was named. Uncle Darren had Duchenne muscular dystrophy and sadly passed away when young Darren was only a few months old. A pupil at Cockington Primary School, Darren has been taking part in the Torbay Civic Award: a programme to encourage children to become active citizens in their own communities. Participating in this inspired him to raise money for the Muscular Dystrophy Campaign by doing a sponsored swim. Darren’s mum, Adele, says, “I am really proud of him and I know he’d make my brother, his Uncle Darren, really proud too. I’m very lucky to have such a thoughtful son who helps a lot with caring for his autistic sister, Demi, as well as all the fundraising.” Darren did his sponsored swim at the TLH leisure resort, Torquay on Wednesday 25 May and managed to swim the ten laps as he’d hoped. He raised around £250. Thank you, Darren.
On the web www.muscular-dystrophy.org/get_involved/ fundraising_events www.northpoletrek.co.uk
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The best of the web W
elcome to the best of the web. Our online presence has come a long way in the past few years - it now goes way beyond just our own website. We are spreading the word about our work on forums, blogs, Facebook, Twitter and You Tube. And it’s not just us; our supporters are in touch on a daily basis too, sharing their ideas and stories about fundraising, research and campaigning. So no matter what interests you, research, campaigning or just getting the latest information, the best of the web should have something for you. If you have any questions about what we are up to online, or an idea of something you would like to see featured in best of the web, please do get in touch. David Pearce Direct Marketing and Digital Manager
Exon skipping clinical trials for Duchenne muscular dystrophy have taken great strides over the past year. Spearheaded by research that we have funded over the past 20 years, these trials are producing encouraging results and progress towards later stage clinical trials, bringing real hope to families. This news was broadcast in late July 2011 and created a flurry of online activity. Here’s a taste.
Email:
“Great news about the clinical trials; this is wonderful for the families living with Duchenne. I was wondering as a parent of a daughter with merosin deficient congenital muscular dystrophy, could these trials lead to treating other forms of muscular dystrophy?” Sharon Mills Thank you for your email. The technology used in the Duchenne clinical trials is quite unique to that condition unfortunately. It works for Duchenne because the gene that causes that condition – dystrophin – is massive, the biggest gene we have. Exon skipping works by removing a part of the gene and the dystrophin gene contains many repeated pieces of code in the middle so removing some of these repeats doesn’t have a big impact on the gene’s function. The molecular patch may be used in a different way for some other conditions. These are conditions that result in the production of a toxic protein. The molecular patch would be used to block the production of the toxic protein. The two main conditions that this may apply to are facioscapulohumeral muscular dystrophy and myotonic dystrophy. For merosin deficient congenital muscular dystrophy, the gene is too small and contains too many important parts for exon skipping. It’s not all bad news though. A clinical trial is being planned to test a drug called omigapil for congenital muscular dystrophies including type MDC1A. Read about it on our website here: www.bit.ly/p6grjQ Is your daughter in the Congenital Muscle Disease International Registry? This will open up opportunities for participation in clinical trials and will also keep you up to date with progress: www.cmdir.org. Our clinical trials page
will also tell you of any new trials that start www.muscular-dystrophy.org/ clinicaltrials. Best wishes Kristina (Dr Kristina Elvidge is the Research Communications Officer at the Muscular Dystrophy Campaign and editor of Target Research.) “I am 38 years old and live in Leeds, West Yorkshire. I have minicores /multicores disease and would be interested in any updates relating to my condition. I would also be interested in any research I could assist you with.” Mr Taylor Many thanks for your email. There is currently a lot of research ongoing into multiminicore disease. Scientists are still trying to fully understand the basis of the disease and so much of this research is focused on finding new genes that might be implicated in causing the disease. They will also look to find out why the disease progresses as it does and what causes the changes seen in the muscle. Although this research is still at a fairly basic level, it is a very important step in eventually trying to develop a specific therapy. By understanding which parts of the muscle cells are involved in the disease and which genes are involved, researchers can target these areas to try and prevent muscle damage occurring. We do not actually carry out any research into multiminicore disease ourselves but we have a clinical trials section on our website, which is regularly updated. You may also wish to join the Congenital Muscle Disease International Registry. Best wishes Julia (Dr Julia Ambler is the Head of Grants and manages both the research grants and Joseph Patrick Trust equipment grants at the Muscular Dystrophy Campaign.)
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TalkMD
Facebook:
What is the impact of Duchenne muscular dystrophy research for families living with the condition? Following the news today confirming that exon skipping is potentially a viable treatment for Duchenne muscular dystrophy, we would like to share with you what that means to just four families we know (this information is on our website at www.musculardystrophy.org/dmdimpact). Please feel free to add your own comments and experiences. Here is a selection of comments: My 2 nephews have got DMD, I am hopeful that they are going to get a chance for a better life :) x My little boy has DMD. I will never give up will always be hopeful a cure is found for our precious boys This is great my son just missed out on trials so am gutted but am hoping one day all these boys will find a cure.
My beautiful grandson 4 years old has DMD. This news takes us closer to a cure for our precious boys and keeps the light on in our lives. My wonderful son died nearly 7 years ago and it would be so good if a treatment can be achieved so other families do not have to suffer the same loss. My son will be cheering this news from a better place. X It’s not just those affected by Duchenne who are pleased about these results. It makes those of us with other forms of muscular dystrophy feel hopeful too! (I have Myotonic muscular dystrophy). Thanks to the Muscular Dystrophy Campaign for all they do to help! Wonderful, Wonderful, Wonderful. I want to say a BIG thank you to all the fundraisers everywhere who are helping to make this research possible. This has given me a boost to carry on with even more determination to continue all the hard work to raise more funds for the Muscular Dystrophy Campaign. My grandson has DMD and I hope and pray that he will benefit someday from everyone’s efforts.
Meet the mods …
At the end of August 2010, a little over a year ago, we started TalkMD, our online forum. We recruited a team of marvellous mods (moderators), all of whom are volunteers and they live with muscular dystrophy or related conditions themselves. Forum members find that the mods’ knowledge and personal experience encourage valuable discussions. Do call in at the forum at any time – you will find that you’ll be most welcome there. What a great community. Sarah Rose I am 33, have congenital muscular dystrophy and live independently, with the help of a team of carers, in East Sussex. I was looking for new challenges in 2010, when working at my local school was becoming too physically demanding. I spotted the position of volunteer moderator for the new Muscular Dystrophy Campaign forum and, having previous experience of forums, decided it was a great thing to do, to keep busy and it tied in well with joining my local Muscle Group. I am proud to be part of the forum and it is brilliant to see how it has grown and become a place that provides support, information, a place to chat and make friends. We have regular contributors as well as those who pop in and out who have all helped us to make TalkMD a really valuable resource. Anne Marie Grove I volunteered after seeing the Facebook advert because for the role, I didn’t need a carer or companion, special transport or toilets; I can be at home and have the flexibility to suit. I’ve worked for a baron, government agencies, oil industries and advertising agents, also sailed with the Jubilee Sailing Trust, produced web sites and performed at piano recitals. I really enjoy the banter and sociability of the forum. We are people; not just our disabilities. There is a great mix of useful information, people eager to help you solve an issue, sympathetic shoulders, fellow ranters and good natured laughter.
Vicki Peggs I’m 37 and I live in Essex with two furry feline friends. I was diagnosed with limb girdle muscular dystrophy when I was eight, and life has been interesting ever since. I love reading, going to the cinema and researching my family tree. I had always wanted to get more involved with the Muscular Dystrophy Campaign and when the moderator post came up it seemed like the perfect opportunity. The forum has proven to be a wealth of knowledge and support for people. What I love about it is the support we give to each other, whether it’s someone who’s just been diagnosed or someone who’s known for a long time. It’s not all serious either; we have a good laugh on there too. You don’t have to be someone who has muscular dystrophy to be part of the forum; it’s for anyone who is affected. What is a mod? According to Wikipedia, moderators (short singular form: “mod”) are users of the forum who are granted access to the posts and threads of all members for the purpose of moderating discussion (similar to arbitration) and also keeping the forum clean (neutralising spam and spambots etc.). Because they have access to all posts and threads in their area of responsibility, it is common for a friend of the site owner to be promoted to moderator for such a task. Moderators also answer users’ concerns about the forum, general questions, as well as respond to specific complaints. They also can do anything to lend a helping hand to a user in need. If you’d like to join in the conversation at TalkMD, you’ll be joining a community of close to 2,000 members who discuss a wide range of topics, such as: • remote controls for plugs and gas fires • cybernetics and exoskeletons • genetic inheritance help • profiling beds. Do visit us at www.muscular-dystrophy. org/talkmd and choose ‘It’s my life’ to introduce yourself. You’ll be most welcome.
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Action on Lights, Camera,
Access
In true Trailblazer style, their awardwinning documentary film into cinema access was entirely conceived and produced by the young campaigners themselves.
After a 2009 investigation into leisure facilities and the resulting report Calling Time - the Muscular Dystrophy Campaign’s Trailblazers decided to follow it up with the making of a film. Funding was secured for the project and the young campaigners teamed up with communications agency, Herd Communications, to put the film together. Workshops were held where – again in true Trailblazer style – the young campaigners learnt new skills, such as interviewing techniques, how to write a script and how to put a storyboard together. In parallel with this, the Trailblazers launched a cinema campaign and went, undercover, to do surveys in their local cinemas around the country. They also developed a charter to give cinema operators something positive to work towards, and started a petition to encourage cinema operators to sign the charter. The Trailblazers wanted to speak to an actor, specifically at a red carpet premiere in Leicester Square, an area where some of the young campaigners had struggled with cinema access. They also wanted to interview big cinema companies, both good and practice providers, but not one of them was prepared to be interviewed. They also planned to interview health and safety experts – as some people had been
branded fire risks in their local cinemas – as well as architects to find out about the design and planning for the buildings. Filming began and the first bit of good news was that actors, Nick Frost and Simon Pegg (pictured above), were prepared to be interviewed at the premiere of their British film, Paul. In January, Tanvi Vyas, Trailblazers Campaigns Officer, went to film on the red carpet, and interviewed the two big UK film stars and, as a bonus, Sigourney Weaver also stopped by and offered her words of support. James Lee, a Trailblazer and the documentary’s presenter, had never done anything like this before, but turned out to be a complete natural. James was filmed at the Stratford Picture House, which was found to be an example of very good access. After the filming came the editing, cutting five or six hours of film down to a final 18 minutes. Herd Communications had the technical expertise, while the Trailblazers knew the story they wanted to tell. The cinema campaign began in August with the launch of the cinema survey report, The Big Picture. The film, Lights, Camera, Access has been entered into a number of film festivals, and has already won an award, as best in the disability category.
The trailer is currently being screened at cinemas, and will be launched officially at the end of the year. It will go cinemas, decision-makers, architects, and other key people involved in the cinema industry. It will also be screened at the All Party Parliamentary Group meeting in December for MPs to see. It is hoped that cinema operators will be at that meeting to say what they will do to improve access. The petition will be presented at that meeting, and Trailblazers will take it to 10 Downing Street on that day too. In the meantime, an e-campaign was launched in late-September, where our supporters were encouraged to email the heads of cinema chains to encourage them to meet with the young campaigners to discuss access for disabled people. Within hours of the campaign launching, all of the cinema bosses had agreed to such meetings; they had each received around 400 emails asking them to do so. If you’d like to join the fight to ensure cinema access for all, please contact Bobby Ancil at 020 7803 4807 or b.ancil@muscular-dystrophy.org.
On the web Watch the trailer for Lights, Camera, Access at youtube/MuscularDystrophy
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To the ends of the earth for us
In June, 19 supporters of ours braved heat and cold and 15 hour days of trekking in the Andes in Peru, all to raise a spectacular £75,000 for the Muscular Dystrophy Campaign. Reaching the lost city of Machu Picchu was an experience ‘overwhelming in scenery, absolutely glorious in nature, with memories that will stay with me forever’, according to trekker Moira Crichton. And the team did all of that to ensure our supporters benefit from our vital work in research, campaigning, care and information. Thank you so much for your dedication to our charity, and for going to such extremes to raise funds for us to support the 70,000 children and adults throughout the UK who are affected by muscular dystrophy and other related conditions. We’ve got our sights set on climbing Mount Kilimanjaro in September 2012, so if you’d like to join us for this amazing African adventure, and raise funds for our vital work, contact Julia Selby: e: j.selby@muscular-dystrophy.org t: 020 7803 4828 Registered Charity No. 205395 and Registered Scottish Charity No. SC039445
Feature
www.muscular-dystrophy.org
by Ruth Martin
He’s a self-confessed adrenaline junkie. He’s an adventurer. He’s well-travelled for his 25 years. He’s a solicitor in a well-known city firm. Meet Srin Madipalli. I did just that recently. I arranged to meet Srin outside Liverpool Street Station in the City of London and, over a sandwich, we chatted about his recent round-theworld adventures. His travels took him to Scotland, Belgium, Italy, Spain, Poland, the USA, South Africa, Singapore and Bali over a period of four months. He ended his
globe-trotting with an experience that he described as “the most amazing experience of my life”: scuba diving in the Bali Sea. Srin has spinal muscular atrophy (SMA Type 2). He has never been able to walk and has used a powered wheelchair for the majority of his life. He had travelled a fair amount as a child, always going somewhere where his father or someone else could carry him. This recent global adventure was a first for him in that he took charge, and travelled independently, with one of his two full-time carers with him all the time.
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“It was SO liberating. I have never felt anything so amazing in my whole life.”
An only child, Srin was born and raised in east London, and moved out of his home when he was 17 to go to university at King’s College, London in the Strand. He wanted to experience living independently and, for the first time in his life, he entrusted his care to people outside of his family. He desperately wanted some independence and at uni he found just that – he had a full-time carer and cherished the new sense of freedom that living independently allowed him. Armed with a first class degree in genetics and re-qualifying as a lawyer, he began a two-year training contract with a leading firm of solicitors in the City of London. After completing that and the gruelling process of applying for and getting a fulltime job with the firm, Srin jumped at the opportunity to take some time out before starting full-time work and planned his round-the-world trip. I asked Srin how he chose which countries to visit. “Well, having grown up in London, I wanted to see the world beyond the M25! There are also three things that are important to me: to go to a place where I can visit people I know, to do things I’ve always wanted to do, and to choose to go to places that are practical for me,” Srin said. He spent a month researching his roundthe-world trip. Using his keen legal mind, Srin pored through details and fine print to make sure of getting the holiday experience he wanted and expected. Although he’s mindful of having to make compromises when he travels, he finds it’s always worth it for the experience and it’s never for ever; it’s just for a fixed time. It’s useful to have legal skills, as Srin knows how to find out what he needs to, and how to ensure that he’ll receive the service and attention he’s been promised. So, going underwater? Srin said he loves doing things that have a slight edge and are a little bit risky, but not downright dangerous. “I’m not stupid, and won’t do anything that will put me in danger,” he said. “I had communicated with the diving company in Bali, and they assured me
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Feature
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they were experienced in providing adapted dives. I felt confident that they would be, and my confidence increased when I met them,” he said. “There was just one thing …” he went on. Having had a basic lesson in scuba diving [did you know that scuba is an acronym for self contained underwater breathing apparatus? I didn’t either], Srin looked out at the ocean from where he sat and noticed many steps down to the beach. He asked his instructor how it could be that a company offering adapted dives at their resort had steps down to the beach. “We are strong and we are helpful,” was the smiling response. And so they were. Seven strong and helpful men carried Srin down to the beach and carried him – wetsuited, goggled, snorkelled and oxygen-tanked – into the ocean where two people dived with him; one held him, and one remained in front of him to ensure that everything was OK. They communicated carefully and regularly through learned hand-signals.
On the web Srin is the co-editor of a blog, Disability Horizons, which provides useful information and resources. There is a travel section which provides a practical guide to flying, a list of accessible hotel and transport providers in various destinations as well as destination reviews written by disabled travellers: www.disabilityhorizons.com Read about Srin’s travels and watch the video of his scuba diving experience here: www.disabilityhorizons.com/into-the-deepblue-sea-disabled-diving-in-bali Bali Access Travel – specialises in accessible wheelchair travel in Bali, Java and Lombok: www.baliaccesstravel.com Bali International Diving Professionals: www.bidp-balidiving.com Accessible Travel & Leisure – helping the less mobile access the world: www.accessibletravel.co.uk Endeavour Safaris – organise safari and adventure tours around Southern Africa www.endeavour-safaris.com If you have any questions about accessible trips away, do give us a call on 0800 652 6352 or email info@muscular-dystrophy.org
Srin stayed under the Bali Sea for an hour. All this, for someone who had only ever been in the water many years ago for hydrotherapy sessions, and had never even gone underwater, let alone breathed underwater. This, together with the experience of weightlessness and movement were foreign sensations to him; it was the most exhilarating experience he’d ever had. He also found the water temperature to be deliciously balmy; “I could have done
the dive in swimming trunks, rather than a wetsuit,” he said. Srin took in the beauty all around him. “It was SO liberating. I have never felt anything so amazing in my whole life. I felt weightless, the ocean was absolutely beautiful, tranquil and colourful, the coral was outstanding, I saw a World War II shipwreck nearby of the USAT Liberty, and fish swam past us. It was unbelievable. I had never felt a buzz like that before. “In the weightlessness of the underwater world, I was able to move my arms and legs a little. Apart from when I am asleep, I am always in my wheelchair, so it was a great feeling to escape the confines of my wheelchair and have the freedom to move my body,” he said. If you watch the video clip of Srin underwater, (it’s on his blog – details below left) his circled thumb and forefinger indicate OK in scuba diving language. It’s not difficult to translate the expression of sheer joy and delight in his eyes. As I watched the video, I felt not only emotional but also envious; I wanted to book a deep sea dive too. So, Srin, what’s next? “Hmm, not sure – I recently went for a flying lesson, which was fun. Tentatively thinking about adapted skiing,” he said, “but no firm plans yet.” Watch this space. Srin is going to need another fix of adventure and adrenaline. Soon
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Srin’s top travel tips: • Understand your disability requirements – ask yourself what mobility devices and assistance you need, what you could do without or manage without for a short while, and what you fundamentally need. Once you know this, you can research resorts, destinations or tour operators which can accommodate your requirements. • Be organised – the more specific your requirements, the greater the need for being well-organised and leave yourself a good amount of time to arrange what you need. • When arranging assistance with the airlines, or booking specially adapted rooms or organising anything else for that matter, be as specific and open as possible with regards to what your needs and requirements are. If possible, I try to get everything confirmed in email so that I have everything in writing. • Confidence is so important. If you haven’t travelled much before, start with smaller trips to somewhere nearer by and then build up to something more ambitious or distant. • A right attitude and a sense of humour – no matter how prepared you are, things sometimes go wrong. In my experience this is just how life is! A sense of humour and a flexible attitude to such events have always allowed me to sort the situation out in one way or another.
Srin’s international adventures took him to Rome, Blyde River Canyon in South Africa (bottom left) and Yosemite National Park in California (bottom right).
What to take: I always take three items with me wherever I travel: 1. Powered wheelchair Ottobock A200: a really good travel chair which can be folded; it is relatively lightweight compared to other power chairs and is sufficiently robust to withstand the rigours of travel. 2. Hoist Molift Smart: a collapsible hoist that can be transported. 3. Mobile shower chair I have two which I use. An older chair, called the Borringia Chameleon, and a newer chair called the Goes Anywhere Portable Commode.
Srin’s condition
Spinal muscular atrophy Spinal muscular atrophy (SMA) is an inherited genetic condition characterised by the death of nerve cells which control muscle function. Most cases of the condition are caused by mutations in the survival motor neuron 1 (SMN1) gene. The presence of these mutations result in a reduction in the level of SMN protein produced in the cells of affected individuals. This causes degeneration of a specific sub-set of motor neurons, which are known as the lower α-motor neurons. Patients with SMA 1, the most severe form of the disease, typically present symptoms by the age of six months and have a life expectancy of less than two years. Less severe forms of the disease, known as SMA 2 and SMA 3 are caused by a less severe reduction in the level of SMN protein. The severity of symptoms varies widely from person to person.
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Target MD and Target Research
who really want to read them, and they’re both now produced fully in-house, the Muscular Dystrophy Campaign can free up more funds to spend on further research, campaigning, support and equipment grants.
In these harsh economic times, we’re working hard to save money. Now more than ever, we rely on every penny of your donations to fund vital research and provide support and care for people with muscular dystrophy and related conditions. With this in mind, we‘ve launched our new-look Target MD and Target Research – both to be delivered to you four times a year.
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November 2011
A story of two sisters
Leisure activities Sports and accessible travel ALL INSIDE
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A majestic afternoon Kate Parkin, a former trustee of the Muscular Dystrophy Campaign, and her husband, Dave (pictured below) spent a splendid afternoon at Buckingham Palace at the end of June as a guest of His Royal Highness, the Duke of Edinburgh. Not only was Kate invited to the Garden Party by Prince Philip, but she also had the opportunity to be presented to the Prince and chat briefly with him about the charity. The invitation to the Garden Party comes to the Muscular Dystrophy Campaign each year from Prince Philip, who is the Patron of our charity. Kate was chosen to represent us this year in recognition of her dedicated service and commitment to the Muscular Dystrophy Campaign in serving as a trustee and her ongoing work for her branch. As mother to her 23-year old son, Ben who has Duchenne muscular dystrophy, Kate has been integrally involved with the charity for 17 years, 15 of which she volunteered her time serving on the national council as a trustee. “It was really lovely to have my contribution recognised in this way,” Kate said. “I was very excited.” The afternoon, which Kate described as ‘quintessentially British’, was attended by about 7,000 people. She guesses that around 150 couples were chosen to be presented to Prince Philip, and was honoured that she and Dave were chosen to be among that number. “The whole Garden Party was beautifully done and I really felt welcomed there,” Kate said. With a new outfit and hat, Kate was pleased that they were allowed to park in the Mall and alongside Hyde Park, which meant they didn’t have to tiptoe through the London Underground in their finery and hats. “It was such an honour to be chosen to be presented to Prince Philip. We were
given strict instructions about how to address him, and when we talked to him, he wanted to know all about the worldclass research that the charity does. We were able to tell him about the amazing progress that has been and continues to be made, through the Muscular Dystrophy Campaign,” Kate said. “It made such a difference that Prince Philip had such an interest in the work of the charity.” Kate became involved in the Muscular Dystrophy Campaign when Ben was a small boy. She initially became involved with the local branch at Norfolk and
Norwich, and has made a significant contribution to the work of the charity over the years, particularly in representing the patient’s voice at medical conferences. She stood as a trustee for the national council and served in that capacity for about 15 years, during which time she also chaired the Clinical Care and Research committee. On behalf of the Muscular Dystrophy Campaign, thank you, Kate, for your considerable contribution and commitment to our work.
The New B500 Family
A good device adapts to the individual needs and requirements of the user, which is why Otto Bock pursued further development of it’s successful B500 power wheelchair range, creating a new series of four models. The B500 Online, E-europe, Classic and Advanced offer all of the advantages featured by their successful predecessor, a variety of seating options, different motor speeds, as well as a modern colour scheme and control options are available. All B500 models are suitable for indoor and outdoor use.
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For more information call: 0845
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