Campaign The newsletter for our supporters
Summer 2011
Raising a cheer for our fundraisers www.muscular-dystrophy.org
020 7803 4800
Welcome to the Summer 2011 issue of Campaign, where you can read all about our successes and exciting new developments made possible by your support. Read on page ten how our campaigning in the South West has led to the appointment of a local, adult neuromuscular consultant in Bristol. It’s thanks to people like you, we are able to support campaigns like this that have the potential to change the lives of people like Steve and James Ledbrook. Read a moving tribute written by a man about his mother (page eight), and on page six meet some of our supporters affected by muscle disease, who are involved in important decision-making through their role in the charity’s research lay panel to assess grant applications. You’ll also read that our Trailblazers have been involved in the launch of a new All Party Parliamentary Group for Young Disabled People, as well as leading the way in calling for equality of access to cinemas for people living with disability around the UK. The London Marathon has been and gone and, in true Muscular Dystrophy Campaign supporters’ style, together we look set to raise a massive £240,000 towards our vital work. Other inspiring events have also attracted the attention of local communities, such as the Bertie 23 team, not to mention the hugely successful inaugural Sports Quiz we held at Lords in March. Finally, you’ll see on page three that Volunteers’ Week is in early June, so it seems timely to thank all of our volunteers and supporters for their valued commitment, hard work and for donating so generously. None of the work that we do to improve the lives of people living with muscle disease would be possible without you. Thank you for your continued support of our work.
Sue Barker MBE President, Muscular Dystrophy Campaign
A spirited movie launch Fun-loving broadcaster, Christine Hamilton, posed with her husband, Neil, to recreate a scene from, Ghost, to raise awareness of our movie-themed fundraising campaign, At the Movies. Christine said, “When I heard about At the Movies, I instantly thought of Ghost and how amazing that scene is.” Christine is a committed supporter of the Muscular Dystrophy Campaign and is also set to trek Peru’s Machu Picchu in June to raise funds for us.
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To find out more about At the Movies or to take part, visit www.muscular-dystrophy.org/movies or call 0845 872 9058.
To support us call 020 7803 4834
News
The vital work of volunteers Volunteers’ Week 2011 has announced the Muscular Dystrophy Campaign as a new official partner. Volunteers’ Week is an annual event which celebrates the contribution that millions of volunteers make across the UK. As a charity we enjoy the hard work and support of a range of volunteers, including fundraisers, campaigners, trustees, and helpers at events. One of our regular volunteers Chris Swain says, “It’s a privilege to volunteer for the Muscular
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Fundraisers took on China last year
Dystrophy Campaign and help in all sorts of ways. It gives me a really good feeling helping others and the staff are fantastic to work with. I also
volunteered this year to help during the London Marathon and had a wonderful day. I highly recommend it to everyone!”
If you would like to volunteer in any way to support the work of the Muscular Dystrophy Campaign, please contact our fundraising hotline on 0845 872 9058 or email volunteerfundraising@muscular-dystrophy.org
New focus on specialist care To ensure the best possible specialist care for neuromuscular patients, the Muscular Dystrophy Campaign has launched a dedicated education and development directorate. It will be dedicated to providing expert information and training for health and social care professionals, such as neuromuscular care advisors, physiotherapists and occupational therapists who work with individuals and families living with muscular dystrophy and related muscle-wasting diseases. Headed by Lyn Inman, this new work will develop strategies and activities to improve care and support for individuals and families. Lyn said, “Over the next three years we will
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provide opportunities for specialist health professionals to share and develop best practice clinical care.” The Muscular Dystrophy Campaign previously funded the work of neuromuscular care advisors around the country, but since April, and thanks to our determined campaigning, the NHS has agreed to foot the bill. The regional neuromuscular care advisors provide vital care co-ordination, advice and guidance on specialist services and equipment and are an important point of contact for families to answer their questions about these rare and devastating conditions.
For further information about how you can support this work, email Lyn Inman, Director of Education and Development at lyni@muscular-dystrophy.org
www.muscular-dystrophy.org
Campaigning
Campaign success – more specialist care The Muscular Dystrophy Campaign has campaigned long and hard for the increased provision of specialist care for people with muscle disease and their families. The team of Care advisors neuromuscular care Kathryn Titchen advisors, who offer and Carolyn Evans specialist neuromuscular care, as well as vital practical and emotional support has recently received a boost with the appointment of new care advisors in South Wales, Hull, Oxford and Birmingham. In fact, just three years ago, only 13 care advisor roles existed and the majority of these were funded by the charity. Through our campaigning we have now secured NHS funding for 30 positions. This includes posts that are soon to be advertised for the East of England, North Wales and the South East. Care advisor for London, Martin Chainani said, “Like many other care advisors, I have a background in social work, and therefore a good understanding of the needs of people with muscle disease. We keep up to date with what is happening in the NHS and advise our patients so they receive the best care and support they need”. Based at NHS neuromuscular clinics around the UK, care advisors have backgrounds in nursing, social care, physiotherapy and occupational therapy.
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To find out how you can access specialist advice and support and to find your nearest care advisor visit www.muscular-dystrophy.org/care or call 0800 652 6352.
To support us call 020 7803 4834
A voice The Muscular Dystrophy Campaign’s Trailblazers work hard to fight inequality and exclusion. Their fight has gone all the way to Westminster and was instrumental in the launch of the All Party Parliamentary Group (APPG) for Young Disabled People in February this year. Chaired by Paul Maynard MP, the new APPG is spearheaded by our Trailblazers, and will tackle the obstacles to higher education, employment and social integration facing young disabled Britons. It will meet regularly to investigate issues ranging from poor access to public transport to access to employment opportunities for disabled graduates. The group will hear from young disabled people about their experiences and will look at what is being done to put a stop to discrimination. Speaker of the House of Commons John Bercow MP and Paul Maynard MP threw their weight behind the Trailblazers, describing them as an “assertive group that gets things done”.
Campaigning
for young people Mr Maynard, who himself has cerebral palsy, said the new APPG would be a significant step forward in improving ministers’ and MPs’ understanding of the inequalities young disabled people face in day to day life: “I feel proud to be chairing this group, which has been set up to tackle the uphill struggle that young disabled people face to achieve goals in life often taken for granted by non-disabled peers.”
Laura Merry, John Bercow and Judith Merry
Are movies accessible? While it’s a great way to spend an evening, going to the movies can be a challenging experience for disabled people. Our young campaigners, the Trailblazers, have set out to challenge cinema owners to improve the service they offer disabled people. Trailblazers have experienced expensive and inappropriate seating, poor treatment at the hands of staff, broken lifts and inaccessible toilets, that all make for a lessthan-fun evening out. A full report by the Trailblazers will be published in the summer, celebrating accessible facilities and naming and shaming those that fall short of the mark. The campaign, supported by a petition
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that is currently being signed by disenchanted cinema-goers all around the country, is designed to put pressure on cinemas to rethink their approach towards disability and make it as easy for disabled cinema goers to access their local facilities as it is for their non-disabled peers. Trailblazers have also used their trademark creativity to make a documentary highlighting the plight of disabled cinema-goers. Along with the launch of the documentary in the summer will be the presentation of the petition, as well as a charter for cinema owners to adopt to ensure their facilities are accessible to all.
For more news from young campaigners fighting for improved rights for young disabled people, visit www.muscular-dystrohpy.org/trailblazers www.muscular-dystrophy.org
Research update
Influencing the future
Just some of the members of our lay panel
To ensure that all of our research grants are used in the areas of greatest need and focus on delivering the results that are the highest priority for our families, we established a research lay panel in 2009 to assess all applications to the charity for research funding.
standard. Our lay panel is made up of people who are affected by muscle disease so it is important that they are involved in and can contribute towards the decisions that affect them. An occupational therapist and a physiotherapist are also involved and a scientific advisor acts as consultant to the panel at meetings.
important for my role as chair of the Duchenne Family Support Group. I am able to keep up to date with advances and what the scientists are doing, and this enables me to report back to the families in a language they understand. This also keeps them positive and informed for the future.” What does the lay For Trevor Thomas, whose panel do? family is affected by The lay panel meets to discuss Meet some of the facioscapulohumeral muscular members the simplified or ‘lay’ dystrophy (FSH), being on the applications that each Phillippa Farrant sits on the lay panel is not only a privilege, researcher has to submit in panel and says that being but gives him an opportunity addition to their scientific part of such a significant to influence what research is application and gives written process keeps her in touch funded by the Muscular feedback to the charity’s with what is happening in Dystrophy Campaign. Medical Research Committee, the world of research. “Like me, other members of “My son is now 19 and being the lay panel have relatives a group of expert scientists that meet annually to ensure our part of the lay panel is exciting with muscle disease. By research is of the highest for me. It is also especially reviewing applications, with To support us call 020 7803 4834
Research update guidance from a medical specialist, we aim to identify which of the proposed projects represents good value In our work to improve the lives of children and adults affected by muscle disease, the Muscular Dystrophy for money in taking us closer Campaign places great value on funding world-class to treatment for one or more research to find effective treatments and cures. We are of the muscle diseases.“ happy to confirm that seven new research grants were Mark and Jane Field’s son, awarded last year. Murray, has Duchenne muscular dystrophy. Since his Information about these research projects can be found diagnosis, they have been on our website at www.muscular-dystrophy.org/research fighting for improvement to his quality of life. Mark said, “Jane and I are graced with skills that enable us to help make change happen. Supporting the Muscular Dystrophy Campaign in guiding the spending on research is a key element in the welfare of our patient group. The Muscular Dystrophy Campaign is very particular about ensuring that help in decision-making comes from the grass roots upwards and, for us, seeing the novel ways in which science is making a positive impact on our lives, is both uplifting and rewarding. Reviewing the grant applications is challenging, but an experience I wouldn’t miss for the world. I am honoured to work with the Muscular Dystrophy Campaign Mark and Jane Field, together with their family and the panel.”
New grants for vital research
Our commitment to research Research remains our first priority and this year we invested almost £1 million to fund 24 research projects covering 16 different forms of muscle-wasting disease
www.muscular-dystrophy.org
Real story
A mother’s remarkable life Clare Walsh, believed to have been the longest-surviving muscular dystrophy patient in the UK, died peacefully in Glasgow in December 2010. Here is a summary of a tribute written by her son, Eugene.
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When my mother was diagnosed with muscular dystrophy in 1959, with a babe in arms and twins on the way, she was given about 12 years to live. Half a century later, we are mourning the passing of a 76- year-old woman who had a rich and extraordinary life. Mum was blessed with a sunny personality, was eternally optimistic and determined to maximise whatever time was left to her. Eugene’s mum, Clare Committed to and inspired by her family, she tackled the challenge of muscular dystrophy with courage and perseverance and never let it get her down. She considered every day to be a gift, every year a godsend, and she loved to travel. She was a battler for the rights of disabled people and became an expert on all the latest tools and equipment. She was in demand as a speaker at conferences and research groups and in her younger years she was involved as a ‘real life guinea pig’ in pioneering research into muscular dystrophy. However it was in the West End of Glasgow that she was most widely known, as she tackled rights for disabled people with the same gusto that she tackled the kerbstones of Byres Road. After a brief stay in hospital with a marked deterioration in her lungs, she passed away at home surrounded by her children, as had been her lifelong wish.
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We are always on the look out for new ways to show our supporters how their donations can help the Muscular Dystrophy Campaign make a real difference to the lives of people living with muscle-wasting disease and their families. If you have an inspiring story you would like to share then we would love to hear from you. To get in touch call Sarah West on 0207 803 4834 or email s.west@muscular-dystrophy.org
To support us call 020 7803 4834
Events
Running London turned orange totals Some have run marathons, others have run relative sprints. But together all the runners who took part in our events this year clocked up thousands of miles and pounds to support our work. Thank you to all the volunteers who helped at all the events, cheering our runners on and to everyone who dug deep and sponsored our runners. 3,330 runners took part in our annual Oxford Town and Gown 10k race in May. The town took on an orange hue as serious runners – as well as fun runners dressed as sumo wrestlers, big bird and a group running in a lifesized papier maché ambulance – paced the closed streets of Oxford city centre. Event organiser, Alun Mainwaring said, “This is the 30th year we have run this event. It is a popular event among our supporters, and this year we’re on track to raise more than £100,000. Thanks to all the runners and supporters for making this possible.”
Orange brightened up the London streets and roars from supporters for the Muscular Dystrophy Campaign runners lifted spirits at the London Marathon in April. Over 100 runners donned their orange vests and covered the 26 miles in style. With cheerers at Tower Bridge and Embankment, our runners were refreshed with inspiration and encouragement to continue the Katie Roberts race, and together ran towards a total of around £240,000 for the Muscular Dystrophy Campaign. Katie Roberts, from Swansea, successfully completed the marathon in five hours and 15 minutes. Katie, was inspired to take on the challenge of a lifetime by her 18 year-old brother who has muscular dystrophy. Katie said, “It was the toughest challenge of my life and I feel extremely proud to have completed the race. I wanted to raise as much money as possible for the Muscular Dystrophy Campaign, which works tirelessly for families like ours, but also for future generations of those affected by muscle disease.”
Great sports Our President, Sue Barker MBE, gathered sports celebrities and charity supporters together at Lords for our inaugural Sports Quiz and Dinner in March. The night was a fantastic success with over £70,000 raised towards our work supporting people with musclewasting diseases. Guests at each table were joined by a sports celebrity, with the likes of Sir Alex Ferguson and Andrew Flintoff bringing a star dimension to the evening. Thank you to everyone involved who made the night such a success. See you next year! find out more about all our events visit our website at ✱ Towww.muscular-dystrophy.org/events
www.muscular-dystrophy.org
My story
Winning the battle for specialised care The appointment of a new adult neuromuscular consultant in Bristol is an important victory for families in the South West who, with our help, have been campaigning for years for improved services for people with muscle disease. It has also been fantastic news for Ledbrook brothers, Steve, 37, and James, 33, who no longer have to travel 200 miles to see a consultant.
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James and I live independently in our own flats in Weston-Super-Mare and over the past four years we have had to travel over 200 miles for our annual appointments with a neuromuscular consultant in Oxford. Both James and I have Becker muscular dystrophy and Dr Hilton Jones, who is an excellent consultant, was the nearest professional qualified to work with our condition. He was in Oxford which is around two and a half hours away. We must have been among the first patients to visit our new consultant in Bristol, Dr Andria Merrison. What a difference this Steve and James Ledbrook with Alison Seabeck MP had made to us: instead of having to take a whole day out of our week to attend an appointment in Oxford, we can now travel to Bristol, which only takes a few hours. It now makes a visit to a consultant as easy as a visit to a dentist or an optician. We could tell from the minute we met Andria that she knew all about our condition. It gave us both such peace of mind to know that we were seeing another adult neuromuscular consultant similar to Dr Hilton Jones, who fully understood our problems and really made us feel more positive about living with our condition. James and I feel much more confident having local support, as well as having someone to support our regular physiotherapy sessions at our local hospital, which are really sporadic. Not only is the local help more convenient for us, it will also save our local primary care trust exorbitant travel expenses. All in all, the employment of a new adult neuromuscular consultant is not only life-changing for James and I, but it will be for many others in our area who also live with muscle disease.
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The Muscular Dystrophy Campaign works tirelessly to campaign for better services for people living with muscle-wasting disease. To find out how you can help us visit www.muscular-dystrophy.org/campaigns
10 To support us call 020 7803 4834
News
Inspiring events for Bertie 23 A group of determined young people, calling themselves “Bertie 23”, have dedicated a year to run a series of 23 events to raise funds for the Muscular Dystrophy Campaign in celebration of the life of their friend, Bertie Brookman. Bertie who had type 21 limb girdle muscular dystrophy, passed away in April last year, aged 23. “Think 23 events in 12 months is a challenge? Bertie spent his entire life living with muscular dystrophy – a challenge far greater than any of the events we are doing,” says Nick.
The most recent event completed was the Lands End to John O’Groats cycling challenge. The group left Lands End at 12.30pm on Saturday 9 April and completed the cycle as a relay between the six of them, in a staggering 112 hours. Defying headwinds, potholes, rain storms, sub-zero temperatures and their team
mates singing Meatloaf, the group enjoyed support all along the way from people cheering them on at the side of the road to messages of support on their website. The group are doing this to honour the life of Bertie, “one of the nicest individuals we have ever known”. Thank you to Bertie 23 for all your hard work in support of the Muscular Dystrophy Campaign. Your funds will go a long way to providing support to individuals with muscle disease and towards research for effective treatments and cures.
you would like to support Bertie 23, you can find full details of all the events, from ✱ Ifswimming to burger-eating at www.bertie23.co.uk
A silver celebration This year marks the 25th anniversary of the grant-giving fund the Joseph Patrick Trust, which was set up by Alexander Patrick. Alexander was inspired to start the Muscular Dystrophy Campaign’s welfare trust in memory of his father, Joseph Patrick, a founder of the Muscular Dystrophy Campaign. Since its formation in 1986, the trust has given over £6 million to fund pieces of life-changing equipment, promoting mobility and independence for over 6,000 children and adults. Libby Smalley, aged ten, who has spinal
muscular atrophy, is due to receive her new, upgraded electric chair from the fund he set up any day now. Libby said, “I will love the new wheelchair I’m getting. It’s going to be great to help me get around quicker and will be much more comfortable. “ The grants cover equipment that the health and social services may not provide, such as wheelchairs that enable children to rise up to reach the same height as their peers and which can drastically increase their mobility allowing them to go places they never could before.
find out more about the Joseph Patrick Trust visit www.muscular-dystrophy.org ✱ Toor call 020 7803 4800. www.muscular-dystrophy.org 11
Join our social network Facebook Support for our Facebook page has doubled over the past year, with more than 6,600 fans getting daily news and updates from the Muscular Dystrophy Campaign. Our fans can also comment on our news stories and interact with each other to discuss their thoughts on the events of the day. Join in the conversation at www.facebook.com/musculardystrophycampaign
Twitter Another way to share and learn interesting information within the Muscular Dystrophy Campaign is to join one of our Twitter communities. If you’re on Twitter already, follow us, otherwise start your own account for free and get short, relevant messages about muscle disease, treatment, services and care. www.twitter.com/TargetMD
Talk MD Over 880 Muscular Dystrophy Campaign supporters have found a place to express themselves on our online forum, TalkMD. They can share their stories, ask questions, encourage each other and advise each other about finding the resources they need. All of the forums’ volunteer moderators live with muscle disease and encourage TalkMD members to get more involved. To join, visit www.muscular-dystrophy.org/talkmd
A Gift in your Will
In memory giving
If you would like to send a strong and personal message of hope for the future by leaving a gift in your Will to the Muscular Dystrophy Campaign, then please call for more information on 020 7803 4834
Honour the life of someone dear to you by giving a donation in their memory to the Muscular Dystrophy Campaign. Not only is this a special way to remember your loved one, but an opportunity for you to extend hope and support to families living with muscle disease. If you’d like to chat about ways to do this, ring us on 020 7803 4834 or email s.west@muscular-dystrophy.org
Contact us at: 61 Southwark Street, London SE1 0HL 020 7803 4834 donations@muscular-dystrophy.org Registered Charity No: 205395 Registered Scottish Charity No: SC039445