Impact report 2010-2011

Impact Report and Financial Statements 2010/11 of the Muscular Dystrophy Campaign

With gratitude …

We rely almost entirely on voluntary donations and legacies to fund our work. Dedicated volunteers, companies, trusts and foundations help us to raise money to fund our work. Without this valued support, we would not be able to do any of the vital work that you will read about in this Impact Report.

While it is impossible to list every individual here, please know that our most sincere thanks go to everyone who has supported us through gifts and donations and through their ongoing commitment to our cause.

Albert Edward Procter Charitable Trust Albert Hunt Trust Sir Alex Ferguson CBE Alexander Patrick Allied Vehicles Annandale Charitable Trust Austin and Hope Pilkington Charitable Trust Bank of America Merrill Lynch Baxters Bell Fundraising Big Lottery Fund Carphone Warehouse Foundation CeX Charles and Nicky Manby Chemring Group PLC Chi-X Europe City Bridge Trust Clapp Family Charitable Trust Clear Channel Constance Travis Charitable Trust Cranbury Foundation Davis-Rubens Charitable Trust www.muscular-dystrophy.org

Donald Forrester Trust Duncan Lewis Solicitors Fowler, Smith and Jones Charitable Trust Guy Weston Genzyme Therapeutics Halifax Bank of Scotland Foundation Harley Davidson Ian Corner IBB Trust Imperial Tobacco Infochem Computer Services Ltd J K Stirrup Deceased Charitable Trust J R Rudd Foundation Jeremy Champion Joseph Strong Frazer Trust Kirby Laing Foundation Leathersellers’ Company Charitable Fund Lodge of Progress Marks and Spencer Dundee McBains Cooper Consulting Limited Michael and Donna Thirkettle Michael Shanly Charitable Trust Miss Marion Broughton’s Charitable Trust Montague Thompson Coon Charitable Trust Mrs Gladys Row Fogo Charitable Trust N & P Hartley Memorial Trust Newman’s Own Foundation Next plc Pamela Barlow Charitable Trust Robert and Evelyn Maud Hall Charitable Trust Rosetrees Trust Schroder Charity Trust ShareGift St Michael’s and All Saints Charities Tamar Foods Templeton Goodwill Trust Tennants Consolidated Ltd Thales UK The Elizabeth Hardie Ferguson Charitable Trust

The Garfield Weston Foundation The John Booth Charitable Foundation The Q Trust The Rayne Foundation vinvolved

Cover image: to celebrate the 25th anniversary of the Joseph Patrick Trust in spring 2011, Alexander Patrick – who founded the Trust – presented Libby Smalley with a brand new powered wheelchair.

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle-wasting disease. We are dedicated to beating muscular dystrophy and improving the lives of all 70,000 children and adults in the UK affected by muscle-wasting disease. page 1

Our work has five main focuses:

• we fund world-class research to find effective treatments and cures • we provide practical information, advice and emotional support for individuals, their carers and families • we campaign to bring about change and vital service improvements and raise awareness of muscle-wasting disease • we award grants towards the cost of specialist equipment, such as powered wheelchairs • we provide specialist education and development for health professionals.

History

The Muscular Dystrophy Campaign was established in 1959 to raise money for research into causes of and cures for muscular dystrophy. In the more than 50 years since then, diagnosis of the many different forms of muscular dystrophy and related muscle-wasting disease has improved and we now provide support for more than 60 different conditions.

• More than 70,000 children and adults in the UK have muscular dystrophy, a type of muscle-wasting disease or related neuromuscular condition, supported by the Muscular Dystrophy Campaign.

• About 70 percent of all people

supported by the Muscular Dystrophy Campaign are affected by muscle- wasting diseases that are inherited and about 30 percent that are acquired.

• Muscle-wasting disease does not discriminate. It affects babies, children and adults, both males

and females, and all ethnic groups.

While all conditions are genetic, some can be inherited or occur out of the blue where there is no family history.

• The severity of the muscle-wasting diseases varies enormously. For the most severe disorders children can die at birth or in their first year of life, while the mildest forms can have only a slight effect on elderly people and have no life-limiting impact.

Our mission is to lead the fight against musclewasting disease in the UK. In the following pages, read about the impact of all the areas of our work in the UK, none of which would be possible without your valued support.

We rely almost entirely on voluntary donations to fund our work.

Contents

Welcome A note from the directors Our year in highlights Self-management and self-care Clinical and care services Best practice development The NeuroMuscular Centre Scientific and clinical research Improving care and support Fundraising It’s all about our people Get involved Spreading the word Joseph Patrick Trust Financial summary Financial statements

p2 p3 p4 p6 p8 p9 p 10 p 12 p 14 p 19 p 26 p 28 p 30 p 32 p 34 p 35 - 58

people are at the heart of everything we do

Welcome Welcome to the Muscular Dystrophy Campaign’s Impact Report for the year ending 31 March 2011.

The last year was one of change, challenge and continued hard work in vital research and towards improvements in specialist care, support, services and treatment for families affected by muscle-wasting disease. For a relatively small but very determined charity, our work resulted in some big changes despite the difficult economic times in which we are living. Indeed, we drew on our reserves last year to maintain our progress but we feel optimistic next year will be a more successful year financially.

With our continued funding of pioneering research, we saw some very encouraging progress. ‘Exon skipping’ technology is moving closer to clinical trials, bringing real hope to families affected by Duchenne muscular dystrophy, and a new technique was developed that can allow families affected by mitochondrial myopathy to have unaffected children.

Our campaigns team made great strides ahead for individuals and families, in securing more NHS-funded neuromuscular care advisors in post in the UK than ever before, and in seeing the launch of the first national development strategy from government, calling for an England-wide neuromuscular service plan. Progress was achieved in the devolved countries too.

We provided information, support and advice for a growing number of individuals, families and carers and specialist education for health professionals. We continue to support and develop care advisors; we reached more individuals and families through our local Muscle Groups, with more people actively campaigning for better services right across the country.

Our new online forum, TalkMD, along with our Facebook and Twitter profiles, engaged more individuals and got them talking to us and to each other.

We made the headlines with the Trailblazers’ challenge of a number of airlines and rail companies, while news of campaign successes and research breakthroughs kept our fight against muscle-wasting disease in the public eye.

Robert Meadowcroft Chief Executive www.muscular-dystrophy.org

We feel enormously pleased with the success of the Tesco partnership (we were their Charity of the Year in 2009/10). It has raised more than £5.2m, which so far has helped more than 700 children access the wheelchairs and equipment they require to live as independently as possible.

We joined forces as the Chairman and CEO following the Annual General Meeting in September 2010, and we wish to give a special thank you to Professor Martin Bobrow CBE for his commitment in serving the charity as Chairman for 15 years, and giving us the benefit of his expert knowledge and wise counsel throughout this period.

We feel it is an honour to be leading this charity forward, together with the staff and the Board. These are tough times for all organisations but we are determined and optimistic in our quest to defeat muscle-wasting disease through research, better care, information and the provision of vital equipment. It takes a dedicated community of funders, volunteers, families, Board members and staff to make this happen, and we are grateful to have such a strong community. Our thanks to you all.

Bill Ronald Chairman

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A note from the directors Dr Marita Pohlschmidt

Director of Research Identifying high-quality research and nurturing this research to success have been among our key strengths in the past year. We saw some of these investments come to fruition last year, with promising technology making a major leap towards the development of treatments. We expanded our communication service so that our families and the public are up to date with these advances and understand the progress researchers are making in the UK and worldwide.

Nic Bungay

Director of Campaigns and Care Thanks to our hard work with people living with muscle-wasting disease, clinicians and the NHS, this year we have more neuromuscular care advisors in post than ever before. Backed by our parliamentary groups across the UK, the NHS is starting to invest in essential, specialist neuromuscular services. Our network of young campaigners – the Trailblazers – also continues to grow, having launched investigative reports and campaigns on tourism and employment.

James Hanaway Director of Fundraising

The Muscular Dystrophy Campaign continues to rely on the generous support of individuals, supporter groups, companies page 3

and trusts across the UK to fund its vital work. Our volunteer fundraising groups have grown in strength and numbers this year and plans have been set to engage with new fundraising partners and develop innovative events and campaigns.

Fiona Jackson Director of Marketing and Communications

Our main priority is to ensure we are the first port of call for everyone at diagnosis. We are building relationships with families, carers and health professionals as well as with media contacts and the government to raise awareness with the general public and to attract new supporters of the Muscular Dystrophy Campaign’s brand, its work and ways to become involved.

We share our stories and successes through our website and publications, the press, broadcast media, our online forums and social network sites.

Lyn Inman

Director of Education and Development We are providing support to the UKwide team of care advisors who support individuals and families. Our regional and national events for families and professionals continue to be well-received opportunities for peer support, the sharing of best practice and hearing about clinical and research developments. We will continue to drive the development of neuromuscular services through our new Services Development Committee,

which oversees the development of our care, information, campaigns, education and development services.

Judith SpencerGregson Director of Finance

We continue to prioritise the allocation of our resources to fund research and provide care services and campaigning to support those living with musclewasting disease. I am delighted to have recently joined the charity and look forward to contributing to its aims and objectives in the coming year.

Matthew Lanham

Chief Executive of the NeuroMuscular Centre (NMC) We have had another highly successful year of improvements, development and growth at the NMC. More and more people with neuromuscular conditions are finding out about our services and benefiting from them. The year ahead is both daunting and exciting; after 21 years, NMC will now separate formally from the Muscular Dystrophy Campaign and become an entirely independent charity. We will, of course, continue to work together and, on behalf of everyone at NMC, I would like formally to record our thanks here for the great help and support given to NMC over the years.

people are at the heart of everything we do

Our year in highlights Towards treatment The ‘exon skipping’ clinical trials for Duchenne muscular dystrophy have taken great strides over the past year.

Spearheaded by our research funding over the past 20 years, these trials are producing encouraging results and progress towards later stage clinical trials, bringing real hope to families.

Leading the news The Muscular Dystrophy Campaign was the lead story on BBC’s Newsnight in August, in response to our 2010 Patient Survey: State of the Nation report and the NHS’s proposed changes to GP commissioning. All Inclusive?, the Trailblazers’ report into the needs of disabled travellers, was launched in

August, with media coverage in The Guardian, The Daily Mirror and on BBC’s London News. The young campaigners also took on a budget airline, over their wheelchair weight restrictions and our media campaign led to coverage in The Guardian and Daily Mirror, and to the airline changing its baggage policy.

Young campaigners in Northern Ireland The Northern Ireland Trailblazers group was established in April and met for the first time in Belfast.

In the media, socially speaking In August, we launched our online forum, TalkMD, for adults living with or caring for someone with a muscle-

wasting disease to communicate with others, offering valuable peer-topeer support on a range of topics.

Trailblazers and transport Trailblazers were expert guest speakers at a meeting of the London Assembly Transport Committee in June on accessibility, speaking of challenges faced by disabled people (as pictured below left) and putting forward solutions identified in the End of the Line report.

Life-changing grants Through our Tesco partnership as their Charity of the Year, we awarded a further 250 grants during the year for wheelchairs, electric beds and other vital equipment, worth over £1.5m.

In pursuit of cures and treatments We awarded a further seven PhD studentships and pump-priming research grants to find cures and treatments, bringing our total investment into research last year to an impressive £1m.

Growing volunteer fundraising We established 22 new fundraising committees across the UK, almost doubled the funds raised by our volunteers and supporters to over £1m and had over 600 people register with us to organise or participate in fundraising events, raising over £550,000.

Encouraging research results Professor Doug Turnbull and colleagues at Newcastle University published fantastic results from their Muscular Dystrophy

www.muscular-dystrophy.org

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Campaign-funded research. They have developed a technique that prevents families affected by mitochondrial myopathy from transmitting the condition to their children.

Wellcome news First-class research funded by the Muscular Dystrophy Campaign led to the award of a £2.5m Wellcome Trust and Department of Health grant to Dr Matthew Wood’s research group at Oxford University, to conduct the first clinical trial of next generation ‘exon skipping’ technology.

The Thomas Report Following a nine-month review led

by Dr Dai Lloyd AM into access to specialist neuromuscular care in Wales, the Thomas Report was presented to Health Minister Edwina Hart AM in July.

The Mackie Report Over 40 families and supporters were joined by MSPs at the launch in the Scottish Parliament of the Cross Party Group’s Mackie Report in September. The report calls for major improvements to services in Scotland.

Young disabled people have a voice in Westminster The All Party Parliamentary Group for Young Disabled People launched in February 2011 at Westminster. The new group will tackle issues facing young disabled people and challenge the attitude of society towards access for young disabled people.

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Neuromuscular services now a priority Thanks to the hard work of our campaigning families and parliamentary supporters, the NHS took groundbreaking steps to introduce a national neuromuscular service plan in March.

Glittering sports event launched The Long Room at Lord’s Cricket Ground was filled with sports celebrities and supporters of the Muscular Dystrophy Campaign who all joined in our inaugural Sports Quiz (pictured above) in March 2011, hosted by our President, Sue Barker MBE.

commitment to sharing news of the latest advances in research with all our supporters and families.

Professional education In January we established an education and development directorate designed to improve care and support for individuals and families affected by muscle-wasting disease. We are providing specialist education, development and peer support for health professionals.

From bench to bedside

We secured cash assurances from the NHS to ensure funding for a total of 30 neuromuscular care advisors around the UK.

In March 2011 we jointly organised the fourth Translational Research Neuromuscular Conference in partnership with the MRC Centre for Neuromuscular Diseases in London. Over 200 scientists and clinicians from the UK and abroad had an opportunity to network and report their latest findings.

International research

Creating community

We kept in close touch with international research developments at the International Congress on Neuromuscular Diseases, held every four years with more than 1,500 international scientists and clinicians working on musclewasting disease. This underpins our

We extended our peer-to-peer support networks by introducing MD Links and offering Living with MD days outside of London. We extended our network of campaigning Muscle Groups to Northern Ireland as we reached all parts of the UK.

Neuromuscular care advisors

people are at the heart of everything we do

Self-management and self-care We work hard to improve care and support for individuals and families living with muscle-wasting disease. We provide practical information, advice and support for individuals, their families and carers.

MD Links The MD Links programme was launched in April 2010, in response to the need for more local peer support across the UK. We are able to help people make a connection with someone else with a similar condition, by email or by phone. To date, there are 170 registered users and they say how helpful it is to connect with people who understand what they going through.

Living with MD Living with MD was piloted in London in 2008 and officially launched as a national programme in June 2010. Developed by a steering group of adults with muscular dystrophy, the programme content is reviewed regularly to ensure its relevance.

The days are held in various areas throughout the UK, and are designed to help people with muscle-wasting disease

I have to admit, I was a little dubious about how it was going to go, but it went wonderfully. We were on the phone for an hour, and it was just constant chat. We talked about muscular dystrophy of course, but not just that.

We talked about family and many other things.

Linda Talbot, who has oculopharyngeal muscular dystrophy, on MD Links

www.muscular-dystrophy.org

to take control of their treatment and manage their own condition. Nine events were held in London last year, and we plan to extend the programme nationally.

Care events The care and support team ran events for families and individuals affected by muscle-wasting disease. The days are designed for informationsharing and for peer support.

In December 2010, 15 children came to our Children’s Party at the Alder Hey Hospital in Liverpool.

In mid-March, we hosted a CMD (congenital muscular dystrophy) Information Day for Families in Watford. Over 50 people attended the day, which saw presentations from Professor Muntoni, Dr A Rutkowski, Dr R Foley, Dr Marion Mey and Jo Reffin.

In March 2011, we hosted an Adults’ Information Day in Cornwall, where individuals, their partners and carers heard presentations and participated in workshops.

National and Scottish Conferences More than 250 families and supporters gathered at the Hilton Birmingham Metropole in September 2010 for our National Conference and Annual General

Meeting. In addition to the popular President’s Awards, which acknowledge the outstanding contributions of individuals and groups, participants heard about the latest research developments, campaigns leading to improved services and successes in the areas of fundraising and marketing.

The Beardmore Hotel Conference Centre in Clydebank, Glasgow, was the gathering place for around 170 people attending the Scottish Conference and Scottish Council Annual General Meeting in October 2010. Families and supporters heard from Nicola Sturgeon MSP, Deputy First Minister about latest developments in the Cross Party Group Inquiry into specialist services, as well as research, campaigns and Muscle Group updates.

Physiotherapy focus In March 2011, we supported an Adult Neuromuscular Physiotherapy workshop at the Centre for Neuromuscular Diseases (NMD) in London’s National Hospital for Neurology and Neurosurgery. The inaugural workshop brought together 17 specialist physiotherapists from across the UK and two from the USA. The workshop was facilitated by Liz Dewar, a clinical specialist physiotherapist at the hospital.

The aim of the workshop was to initiate the development of evidence-based best clinical practice guidelines, and to identify physiotherapy research priorities.

Topics discussed included standardisation of assessment and exercise advice,

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from which evidence-based clinical recommendations will be collated; and orthotic management in adult neuromuscular diseases including issues around service provision and prescription of devices. Other topics focused on fatigue management and the assessment of people with Inclusion Body Myositis (IBM).

Shree Pandya, guest speaker from the USA, closed the meeting with a comprehensive and insightful overview of her experience and lessons learnt in running clinical trials in muscle-wasting diseases over the past 30 years.

Looking forward In the year ahead, our main education and development objectives are: • to ensure the best possible health and social care services for people with muscle-wasting disease by leading the development and implementation of our new Education and Development service, in partnership with professional bodies and external agencies • to develop a UK-wide conference and seminar programme for health and social care professionals, working with other agencies, and also lead on our national, Scottish and future Welsh conferences • to ensure that doctors and other health and social care staff can increase their knowledge of muscular dystrophy and related conditions, through developing and maintaining the education and professionals’ section of our website.

We are aiming to publish the full proceedings [of this year’s workshop] in a physiotherapy journal and plan to hold this network meeting annually to create a core knowledge base and highlight research opportunities. This will benefit people with primary muscle-wasting diseases and the knowledge can ultimately be disseminated to other therapists in the field.

Liz Dewar

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people are at the heart of everything we do

Clinical and care services We plan to ensure that all individuals and families affected by muscle-wasting disease receive the highest quality care and services. To do this, we provide specialist education and development for healthcare professionals.

Neuromuscular care advisors Thanks to our campaigning with the Specialised Commissioners and continued negotiations with the NHS Trusts, the NHS now fully funds all the neuromuscular care advisors throughout the UK. During 2010, more than 850 people joined us in campaigning for more care advisors, resulting in four new regional appointments being made: Rachel Salmon and Sarah Harris provide specialist care advisory services to individuals and families in South Wales; Margaret Jackson takes care of the South Yorkshire area; and Kathryn Titchen has joined Carolyn Evans in the West Midlands.

The Muscular Dystrophy Campaign’s awareness raising activities have led to an improvement in specialist care and access at a local level, for example through the promised provision of 19 NHS-funded care advisor posts during the year ahead, which will bring the total number to 30.

groups for the various conditions. For example, we provide administrative support to the FSH (Facioscapulohumeral muscular dystrophy) Support Group by mailing their bi-annual newsletter for them; we send new information, as well as our flagship publications – Target MD and Target Research – to them.

Where possible, we also support our charity partners’ conferences and events, such as the Jennifer Trust for Spinal Muscular Atrophy, the FSH Support Group and CMT UK (CharcotMarie-Tooth United Kingdom).

We build partnerships to increase our reach and engagement within the community of individuals and families with muscle-wasting disease.

Supporting individuals and families across the UK Care advisor numbers have more than doubled since 2009

2009 2011 South West 2 5 West Midlands 1 5 Scotland 2 2 Yorkshire and Humber 1 3 East Midlands 1 1 South Central 1 2 London 1 1 North West 2 2 North East 1 1 Northern Ireland 1 1 Wales 0 3 East of England 0 3 South East Coast 0 1 Total 13 30

Creating a community As the leading charity for all forms of muscular dystrophy in the UK, we support around 60 muscle-wasting conditions, and we value the opportunity to work closely with partner charities and support www.muscular-dystrophy.org

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Best practice development We work closely with muscle centres and clinics across the UK, develop new support for clinicians and professionals and enhance their links with the Muscular Dystrophy Campaign.

The development of the new education and development directorate in early 2011, headed by Lyn Inman, focuses the charity’s attention on the provision of specialist education for health professionals, as well as the growth of professional networks and the promotion of information and best practice guidelines to professional bodies.

Factsheets and information Our comprehensive and up-to-date factsheets are second to none as a useful and easy-to-understand resource for individuals and families.

It was down to our first meeting with the Muscular Dystrophy Campaign in 2007 that we changed the way we offer specialist support to boys with Duchenne. Before that meeting, we had no idea that young men with Duchenne can live into their 30s and even 40s with the right medical care.

Vice-President of the Muscular Dystrophy Association in Mauritius, Philip Wan

The database has active links with national and international initiatives and advocacy groups, including the TREAT-NMD Network of Excellence; Action Duchenne; the Myotubular Trust; the Jennifer Trust; and Cure CMD.

Professional networks Our professional networks offer vital information and support to 622 physiotherapists, 1,034 occupational therapists and 357 schools across the UK.

Find out more at www.muscular-dystrophy.org/ forprofessionals

Neuromuscular database

Last year, we had contact with over 440 physiotherapists, occupational therapists and schools, and our information line dealt with 10,420 calls for literature and 3,392 requests for advice and support from individuals, family members and friends.

Together with the MRC Centre for Neuromuscular Disease, we supported the development of the National Neuromuscular Database, which will contribute to national and international initiatives in the field of neuromuscular disorders.

We received requests for our information from 62 countries, including Slovenia, South Africa, Barbados, Brazil, the United States of America, Mauritius, Oman and China. In addition, professional bodies, GP practices and NHS Choices access our information for their needs. Our factsheets relate to daily living, equipment and adaptations, medical conditions and medical issues, and we add to our range of factsheets as the need arises.

Originally set up by Professor Francesco Muntoni and Dr Adnan Manzur (Dubowitz Neuromuscular Centre, Great Ormond Street Hospital), the database will aggregate data from children with Duchenne muscular dystrophy (DMD) and Spinal Muscular Atrophy (SMA) followed in all the major paediatric neuromuscular centres in the UK. More recent developments include the conditions Inclusion Body

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Myositis (IBM), the congenital muscular dystrophies and myopathies.

people are at the heart of everything we do

The NeuroMuscular Centre in Cheshire Based in Winsford, Cheshire, and established in 1990, the NeuroMuscular Centre provides a range of unique services and specialist advice, as well as a thriving social enterprise, all with the sole aim of improving the quality of life for adults with muscular dystrophy.

The NeuroMuscular Centre is run for and largely by adults with neuromuscular conditions and, in addition to the 15 adults employed in the design+print operation, the Centre offers specialised physiotherapy (as pictured opposite) for around 360 patients from the North of England and North Wales, and advice to health professionals and patients all around the UK.

We work to provide opportunities and options for people whose disability often means they see little positive future.

The Centre experienced a successful year in 2010/2011, with the overall important achievement being the significant building improvements we introduced.

A successful fundraising appeal gave us the opportunity to make much needed investments in providing better spaces and equipment at the Centre, so that service-users and carers can enjoy a more relaxing and rewarding time.

Highlights of the Centre’s 2010/2011 year include:

• seeing 20 students with muscular dystrophy graduate with vocational qualifications from the NeuroMuscular Centre • providing over 8,600 physiotherapy treatments • encouraging progress towards the creation of other neuromuscular centres, in Birmingham in particular • investments in new printing and leaflet and booklet-making equipment.

Looking forward For the year ahead, we look forward to launching the NeuroMuscular Centre as an independent charity, facing the future with confidence. To support this newly independent Centre, we will recruit a new Board of Trustees and build up financial reserves to provide a sustainable and viable platform for independence.

In addition, we will continue to grow our physiotherapy services under the leadership of our newly appointed Head of Physiotherapy. We will work with colleagues in the NHS to ensure that services and funding are secured through this unsettling period of NHS upheaval.

We will maintain our close and strong links as a partner and friend of the Muscular Dystrophy Campaign, of course, in the years ahead.

• the creation of a new area for carers, and a treatment room • the installation of a new, magnificent and fully accessible kitchen

www.muscular-dystrophy.org

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people are at the heart of everything we do

Scientific and clinical research The Muscular Dystrophy Campaign’s research programme invests more than £1 million each year into cuttingedge research to find effective treatments and cures.

Research remains the number one priority for the Muscular Dystrophy Campaign.

We fund world-class research from basic science and development of therapeutic approaches through to clinical trials and disease management throughout the UK.

Research grants We had 29 active research projects underway, covering 18 muscle-wasting diseases, at a total cost of £853,039.

We maintain a particularly strong focus on Duchenne muscular dystrophy, of course, and the rarer conditions too.

With valuable input from our lay panel, we awarded four PhD studentships and three pump-priming grants. The pumppriming grants are one-off grants of up to £30,000 each, that give scientists the opportunity to spend a year testing innovative ideas to obtain proof-ofprinciple to attract further funding.

Professor David Beeson, at the University of Oxford, was awarded a PhD studentship that investigates the benefit of the drug ephedrine for people with a particular form of congenital myasthenic syndrome. His research could lead to an effective treatment for people living with myasthenic syndrome.

University College London’s Professor Michael Duchen is studying how the genetic defect that causes core myopathies can affect the ‘batteries’ of www.muscular-dystrophy.org

the cell – the mitochondria. The PhD studentship will help to understand better the underlying biology of this condition which then will form the basis to develop new treatments.

Searching for new genes that cause periodic paralysis and the myotonias is the focus of Professor Michael Hanna and his PhD student, at University College London. The results will improve diagnosis and allow clinicians to give more accurate information about how the condition will progress and the risk of passing the condition on to future children.

Dr Matthew Wood and his PhD student at the University of Oxford aim to investigate ways to improve upon the current exon-skipping technology.

This involves short DNA fragments – molecular patches – and their research particularly focuses on the delivery of the molecular patches to the heart.

Dr Matthew Wood and his colleagues also received a pump-priming grant to investigate a group of genes called microRNAs, and examine the role that they play in Duchenne muscular dystrophy. This research could find new ways to monitor disease progression and could also be used in clinical trials, replacing painful muscle biopsies.

priming grant to gain new insight into the disease mechanism underlying congenital myasthenic syndromes. The knowledge gained will help to develop new approaches to treat this severe form of muscle-wasting disease.

Professor Rigby at the Institute of Cancer Research in London aims to use the awarded pump-priming grant to develop an animal model to shed light on the function of a gene called ‘Mrf4’ that is involved in muscle growth. He is hoping that it will help to develop therapies that promote muscle growth in individuals affected by muscle-wasting disease.

Bringing experts together We bring together clinicians and scientists working in the field of neuromuscular diseases to share their experience. This is specifically important for conditions that are considered rare, and essential to bring new research advances swiftly to the clinic. We again jointly organised the fourth Translational Neuromuscular Conference in partnership with the MRC Centre for Neuromuscular Diseases.

Held in March in London, more than 200 scientists and clinicians had an opportunity to network internationally and report their latest findings.

We also increased our support to the European Neuromuscular Centre this year to £27,000, to promote and develop international research.

Professor Dame Kay Davies, at the University of Oxford, received a pumppage 12

Keeping our families and supporters up to date on new research developments The news our families are most interested in is the development of treatments.

During the last year we published more than 50 research news stories on our website, added information about 72 clinical trials to our database and published the third edition of Target Research, a magazine solely dedicated to research. We added to our website content by celebrating our research successes with reports on completed grants. We also added a section about patient registries.

The patient’s voice Clinical trials are now emerging and it is important that our families are involved from the start. Individuals living with the condition are the experts – they can set priorities and identify gaps. We take part in a number of international projects such as TREAT-NMD and Bio-NMD to ensure that the voice of those affected and their families is heard. We also continue to expand our relationship with our grantees and the scientific communities through laboratory visits and by participating in scientific conferences, to keep our families abreast of new developments.

This year saw further consolidation of the involvement of patients and families in the research activities of the charity.

Our lay research panel is growing in strength, providing an opportunity for our families to give their opinion on the research projects we fund.

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Research in the media In the last year, the media reported on a number of research advances that would not have happened without the charity’s support. A highlight was the successful pioneering research on a serious group of inherited disorders known as mitochondrial diseases. Professor Doug Turnbull and Dr Mary Herbert at the University of Newcastle developed an IVF technique involving the transfer of DNA between two human eggs, which has the potential to prevent the transmission of the condition to future children.

The study was primarily funded by the Muscular Dystrophy Campaign and the results were published in the prestigious scientific journal, Nature, as well as making the headlines in leading national newspapers and TV channels.

Looking forward In the coming year, the research team will: • continue funding high-quality

research projects • support translational research • consolidate and develop lay

involvement • improve our research

communication programme • support the set-up of patient registries • strengthen our relationships

with key players in the field of neuromuscular research. people are at the heart of everything we do

Improving care and support We campaign to bring about improvements in specialist healthcare and access to vital services for people with muscle-wasting disease

Our hard-hitting campaigns for and on behalf of people affected by musclewasting disease have led to many improvements in services and support in the last year. We successfully launched a number of key reports and findings, have made key recommendations to government to bring about necessary change, and encouraged our supporters to engage with their local representatives to ensure they have access to the services they require. Our young Trailblazers not only took on a commercial airline, but were also instrumental in ensuring the voice of young disabled people was heard loud and clear at Westminster.

Thanks to the excellent work of individuals and families with musclewasting disease, our campaigns gained much media attention during the past year. Read about these on page 30.

Campaigning successes Our hard work has borne much fruit in the past year. The NHS has invested significantly in the provision of specialist healthcare services for people with muscle-wasting disease, by agreeing to fund 30 neuromuscular care advisors across the UK within the next year.

Thanks to the excellent

www.muscular-dystrophy.org

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We were delighted to learn in March that the NHS had agreed to take groundbreaking steps to develop a national neuromuscular service plan in England. The Director of the NHS National Specialised Commissioning Team told MPs and Peers at Westminster that neuromuscular services would be a priority in the annual work plan of each of the ten Specialised Commissioning Groups across England. This was a direct result of a key recommendation we made in our annual patient survey, launched in August last year, where we called on the government to develop a national neuromuscular service plan.

Parliamentary reports

The Thomas Report: access to specialist neuromuscular care in Wales This report, developed by Dr Dai Lloyd AM and his Welsh Cross Party Group on Muscular Dystrophy, called on the Welsh government to recognise the need for specialist neuromuscular services throughout the country.

The report was named in recognition of the work of Ray Thomas, a committed and selfless campaigner for neuromuscular services in Wales for over 35 years. Despite losing two sons to Becker muscular dystrophy, Ray has never wavered in his determination to secure better health services for all people in Wales.

The Mackie Report in Scotland

This report into access to specialist neuromuscular care and social care in Scotland, was presented in September 2010 by the Cross Party Group in the Scottish Parliament on muscular dystrophy (pictured opposite).

As a result of the Thomas Report and the Mackie Report, new investment in specialist posts is being made in Wales and Scotland.

Pressure in Northern Ireland Northern Ireland assembly members heard our call for support for individuals and families in the province. As a direct result, we secured vital funds for the care advisor in Nothern Ireland.

Thank you to our campaigners!

State of the Nation: The 2010 National Survey

Our patient survey findings were published in August 2010, highlighting the need for a national neuromuscular service plan to ensure that those with muscle-wasting diseases have access to the specialist care and support they need. This report was the lead story on BBC’s Newsnight and secured coverage in The Times and Daily Telegraph.

The Cost of Living with Muscle Disease

Our report into the Cost of Living with Muscle Disease was launched in December 2010 and called on the government to take action to alleviate poverty among people with muscle-wasting disease.

Manifesto for Muscle

In the build-up to last year’s parliamentary elections in May, we called on candidates to sign our Manifesto for Muscle to commit to supporting our fight against muscle-wasting disease. As a result of the campaign 66 newly elected MPs pledged to work with us in the fight against muscle-wasting disease.

Get Moving – the case for effective wheelchair services This report, launched in June 2010, called for the new government to address shortcomings in the Department of Health’s Wheelchair Services. The report was debated in the House of Commons when the Health Minister announced a new pilot study aimed at improving access for powered wheelchairs. page 15

people are at the heart of everything we do

Reaching more people We have engaged more and more people affected by muscle-wasting disease around the UK to be involved in bringing about change. Primarily through our Muscle Groups around the country, many of our supporters have campaigned for improved services, spoken out against inadequate services, and shared their personal stories of woeful shortcomings in service provision. We have enabled people to put their concerns directly to politicians and in the media.

Joanne Ashton, whose young son has Duchenne muscular dystrophy, is a member of the North West Muscle Group. She said she was glad she joined the Muscle Group:

It means I’ve got all this information early on and I won’t come up against a brick wall later – I feel I’ve been pre-armed. It’s nice to know I’m not on my own and it’s good to meet other people at different stages. At the Muscle Group I met young lads with Duchenne muscular dystrophy who are in wheelchairs and they’re fantastic, they’re doing so well.

I definitely feel that services are improving in Sheffield as a direct result of the Yorkshire and Humber Muscle Group, of which I am an active member!

Rachel Wells lives in Sheffield and has myotonic dystrophy

Our young campaigners The Trailblazers network of young campaigners has grown to more than 360 young disabled people, and they had major campaigning successes during last year. In August, they took on a leading budget airline, over their wheelchair weight restrictions which prohibit many disabled people from travelling with them. A media campaign, with coverage in The Guardian and Daily Mirror, led to the airline changing its baggage policy. www.muscular-dystrophy.org

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In February 2011, the young campaigners took their fight all the way to Westminster, with the launch of the All Party Parliamentary Group (APPG) for Young Disabled People. Chaired by Paul Maynard MP, and with the support of John Bercow, Speaker of the House of Commons, the APPG will tackle everyday issues that face young disabled people across the UK. Sulaiman Khan, a 25-year-old awardwinning Trailblazer from London, with congenital muscular dystrophy, said, “Thank you to the Trailblazers and the Muscular Dystrophy Campaign for giving me the platform to campaign for an issue that is close to my heart and my circumstances.”

Advocacy successes Our newly relaunched advocacy service had some notable successes as we campaigned on behalf of page 17

individuals and families who were not receiving the services they needed.

Bernie Gamble, School Welfare Officer, turned to the Muscular Dystrophy Campaign while he was helping a young man with Duchenne muscular dystrophy: “At a time when I had nowhere to turn, the support services team were there to help. Without their support, I dread to think what might have happened.”

Jon Hastie (pictured above) is a 30-yearold man with Duchenne muscular dystrophy, who approached us to assist him in his struggle to live independently:

Looking forward Our key campaigns objectives for the year ahead are: • to boost NHS investment and

neuromuscular care advisor support, ensuring all have access to specialist care, backed by parliamentary work • to reach out to and work with more people affected by muscle-wasting disease • to expand the focus of Trailblazers, with the cinema report, the work of the All Party Parliamentary Group for Young Disabled People and the Employment Report.

I would encourage anyone who is facing a similar fight to get in touch with the Muscular Dystrophy Campaign.

Their help and expertise have proven invaluable in allowing me to continue to enjoy my life, my work and my independence.

Jon Hastie

people are at the heart of everything we do

www.muscular-dystrophy.org

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Fundraising We rely almost entirely on voluntary donations and legacies to fund our vital work throughout the UK. Dedicated volunteers, companies, trusts and foundations help us to raise money to continue our work.

Supporting our work You can get involved in our five main strands of fundraising activity at the Muscular Dystrophy Campaign: • our volunteer fundraising managers throughout the UK support individuals and families in their areas, as well as fundraising committees and branches, who run fundraising events for us • our events team host a range of our own events – or support individuals and teams who raise funds for us through existing events (as pictured opposite) – throughout the year • we work together with companies to develop long-term relationships as well as charity of the year partners, raising funds through employee fundraising and cause-related marketing • funding through trusts and

foundations who support our work through key partnerships and grants is vital to our long-term plans • we also involve our key supporters in our funding, giving individuals the opportunity to be part of the charity’s work.

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All of these activities make a significant impact on the services we can deliver and enable us to continue our vital research into treatments and cures.

We rely mostly entirely on voluntary donations to continue our work and we are tremendously grateful for the valued and on-going support we receive.

Having had a successful and challenging 2010/2011, our top three fundraising objectives for the year ahead are: • to generate sustainable income to meet 2011/2012 targets and fund the charity’s vital work in research, care, campaigns and support • to grow our support across the UK, by establishing new volunteer fundraising groups and building new partnerships with companies, trusts, groups and individuals • to maintain the highest level of

support and care for our supporters, new and existing, and to ensure efficient returns on fundraising investment.

people are at the heart of everything we do

Volunteer fundraising Our branches, volunteer fundraising committees, individuals and groups that raise money for us across the UK are a vital lifeline for the charity. Without their valued support, we would not be able to continue to help all the families living with muscle-wasting disease, and their carers.

With a team of volunteer fundraising managers throughout the UK, managing events and gathering support in their regions, we offer fundraisers the opportunity to run a series of events for us. There is a range of options to choose from: pre-packaged events that we have developed, such as Come Dine With Us (launch event pictured right) or At The Movies; a series of extreme challenge events, such as skydiving, zipsliding or swimming with sharks; and international challenges, such as dog-sledding or mountain climbing. We welcome new fundraising ideas and support our volunteer fundraisers every step of the way.

Our top three fundraising achievements of the past year include: • establishing 22 new fundraising committees across the UK. These committees went on to raise almost £74,000 for the charity • a significant increase in funds raised by our volunteers and supporters over last year’s figure. They raised over £1million, which was a marked increase from the previous year’s £650,000 • an impressive total of over 600 people registering with us and going on to organise or participate in fundraising events for the charity, and raising over £550,000. www.muscular-dystrophy.org

Doing it for Bertie

Throughout his life, Bertie Brookman was truly inspirational to both his friends and family. Despite his condition (Bertie had muscular dystrophy, type 2 limb girdle), he would approach things positively and not let anything get in his way. Sadly, Bertie passed away in April 2010 and a group of his friends wanted to do what they could to help others with the same condition.

The group felt that one or two smaller events wouldn’t quite cut it, so they pushed for 23 tough events in just 12 months, which seemed like a fitting number, given that 23 was Bertie’s age when he passed away.

‘Bertie 23’ turned into much more than they had imagined. They haven’t only raised funds (£12,000 so far), but also learned so much more about the disease that now they want to help out in more ways than just financially. They recognise the importance of awareness and this will be another of their main focus areas as they continue to run ‘Bertie 23’ past the 12 months originally planned. We’d like to thank the team for their commitment to supporting us in Bertie’s memory.

Scotland Mackie’s of Scotland held their first open farm Sunday in aid of the charity on 6 June when they welcomed 6,000 visitors. page 20

The crowds enjoyed fantastic activities with a charity auction, tractor trailer rides, arboretum treasure trail, live music and a chance to visit the cows and milking robots. Mackie’s had created 100 new flavours of ice cream for the day and even hosted a vintage car rally. Following this fantastic day, we were delighted and grateful to receive a cheque for £45,000 from sales director Denis Emslie.

Northern Ireland

South West and South Wales

Shauna McDonald and friends from Newtownbutler organised a sponsored ‘Facial Hair Dare’ where men were challenged not to shave for a month.

Participants were then treated to a ‘shaving party.’ £4553 was raised to help in the fight against muscle-wasting disease.

The newly formed Bristol and Bath fundraising team have got off to a flying start with their Asian Banquet dinner in March raising £6,875 and built a partnership with many local businesses.

The team continue to grow in supporters and have a full calendar of events planned throughout the coming year.

North East and Yorkshire

South East

Our big successes in 2010 were the introduction of the Acomb, Prudhoe and Sheffield Committees with others in the pipeline for 2011. The backbone of the region, in terms of both fundraising and peer-to-peer support, are our branches who continue to be true ambassadors for the charity and play a huge part in the success of the region’s work.

An amazing year for our branches who raised over £45,000 in the South East. We have some fantastic supporters who took on cycling, swimming and all kinds of daring challenges to raise nearly £64,000.

North West and North Wales 2010 saw many highlights in the North West and North Wales, which included continuing to build the Great Manchester Run and seeing a substantial growth of activity and income from the North Manchester fundraising group year on year.

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In addition, new volunteers were recruited to help administer some of the core fundraising events in the region and some major donations were received, including those from events organised by Christine Ogden, St Anne’s Old Links Golf Club, Lee Webster and Polly Edwards who undertook an Indian cycle ride to raise funds.

London and the East of England The South Woodham Ferrers shop for the Muscular Dystrophy Campaign had a fantastic year raising over £32,000.

Our outstanding individual fundraisers also took on inspiring challenges such as Tom Wright who trekked the Great Wall of China in memory of his brother and raised over £6,500.

people are at the heart of everything we do

Events Our events team put together an outstanding calendar full of fun and unique opportunities to engage with different sectors of the community throughout the UK. As always, the team focuses on raising significant funds to help us continue our vital work, and raising awareness of muscle-wasting disease.

Oxford Town & Gown 10k

Thank you to everyone who has supported our events by participating, attending, cheering and helping us ensure they are a success.

Over 200 golfers took on this mammoth challenge in June 2010, four times as many as the previous year.

The events ranged from the 27th outstanding, and always successful, Microscope Ball, backed once again by the property industry, to the launch of our new Sports Quiz, hosted by our President Sue Barker MBE at Lord’s Cricket Ground. We had the support of 16 sports celebrities, including our Vice President, Sir Alex Ferguson CBE and cricketer Freddie Flintoff.

We are grateful again to our dedicated supporters who took on challenges

such as the BUPA Great North Run, the Virgin London Marathon, our own Oxford Town & Gown 10k run and Golf Marathon, not to mention a group who trekked The Great Wall of China (pictured below). All rose to the challenge, raised much-needed funds for the charity and helped us to grow our community of supporters throughout the country.

Virgin London Marathon 2010 130 runners took to the streets in glorious sunshine in April and raised thousands of pounds in sponsorship for us. Special mention should go to Paul McIntyre, who has Becker muscular dystrophy, who battled against the odds to finish the Virgin London Marathon in two days.

In our 29th Oxford Town & Gown 10k in May, we had over 3,000 supporters running through the city to raise vital funds for us.

Four Course Classic

British 10K and Property Week Challenge St George’s Properties raised a record £22,000 to win the Property Week Challenge in July 2010. Their team was joined by 300 other sponsored runners who took to the streets of London in the blistering heat to raise money for the Muscular Dystrophy Campaign.

Summer Concert Series A series of summer concerts was held in some amazing settings at Harewood House, Meridian Park, Woburn Abbey and Beaulieu. Over 5,000 people flocked to hear Russell Watson and special guests at these events.

Celebrity Sports Quiz Sue Barker MBE was joined by a host of other sporting legends for our inaugural celebrity Sports Quiz in March at Lord’s Cricket Ground, raising our profile and vital funds for the charity.

Microscope Ball With the help of 700 top property executives, the Circus-themed ball was one of the most successful gala balls the charity has ever organised. www.muscular-dystrophy.org

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Oxford Spirit of Christmas Stars of stage and screen turned out in great numbers to support this beautiful Christmas concert. With help from Sarah Kelly and the Dragon School, this event helped to raise significant funds to support our cause. Indeed, our Spirit of Christmas concerts are a highlight each year across the country.

Great North Run Our 150 brave runners took to the streets of Newcastle in September for the world’s most popular half marathon.

Michael and Donna Thirkettle raised over ÂŁ12,000 for their amazing efforts!

It was all worthwhile as we came around the bend on the coast road near the last 800 metres, when we heard Jed cheering us on; I spotted him and went and pulled him under the barrier. We ran the last part all together, holding hands in the pouring rain, and came past the finish line completing the race together. What a fantastic moment that was.

I will never forget it.

Michael Thirkettle, after completing the BUPA Great North Run. He and his wife, Donna, pictured (right) with son, Jed, raised over ÂŁ12,000 from friends, family and colleagues in 2010.

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people are at the heart of everything we do

Working in partnership Corporate partnerships Following our successful Tesco Charity of the Year partnership in 2009, we continue to build strong links with our existing supporters and are now forging new partnerships. We use our experience to bring real value to the companies we work with and grow long-term associations that will see the charity funded into the future.

Next plc has committed to a three-year partnership with the charity, starting in 2010.

Genzyme is working closely with us and building on its support year-on-year including sponsoring key events and conferences.

Following the successful partnership that Harley Davidson enjoys with the Muscular Dystrophy Association in the United States, Harley Davidson UK is now one of our partners. Employees organise sample sales in aid of the Muscular Dystrophy Campaign, and we have great plans for 2011/12 with our pin badges and collection tins ready to be distributed in every Harley Davidson retailer in the UK. CeX buy, sell and exchange a range of technology and entertainment products including mobile phones, video games, DVDs, HD films, computers, digital electronics, vision and music CDs. When selling any item to CeX, customers can donate some or all of the value of their sale to the Muscular Dystrophy Campaign, both in-store and online.

www.muscular-dystrophy.org

Payroll giving is proving to be a reliable, long-term source of financial support for the Muscular Dystrophy Campaign.

Hundreds of employees are choosing to donate to the charity in a tax-efficient way.

Trusts and foundations We are grateful to the more than 30 trusts and foundations that have generously given substantial donations to the Muscular Dystrophy Campaign during the past year. In addition, many more trusts and foundations assisted us with grants to the Joseph Patrick Trust for specialist equipment, such as powered wheelchairs, beds and computer equipment.

Grantmakers include the Donald Forrester Trust, the Cranbury Foundation, the Rayne Foundation and Montague Thompson Coon Charitable Foundation, all of whom provided funds for vital research projects. The Big Lottery Fund, including regional Awards for All grants, helped us launch new Trailblazer projects in Scotland and Northern Ireland.

Notable contributions came from the Northwood Charitable Trust for our care services in Scotland; from Rosetrees Trust for research, and from the City Bridge Trust for supporting our Living Through Transition project. Two other key partnerships for us were vinvolved, who made a significant contribution to our UK-wide Trailblazers network, which helped them to recruit many

new members, and from Newman’s Own Foundation, which assisted us with a large donation towards specialist equipment especially for children.

Pedal power!

Taking 11 days to cover the 781 miles from England to Spain, Guy Weston (pictured opposite) got on his bike and took on storms, broken pedals and even a wall of snow-covered rock as he passed the Pyrenees, to raise a fantastic £120,000 for the fight against muscle-wasting disease.

Guy was inspired to take on his epic cycle in memory of his friend Mark Reynolds.

Key supporters The Q Trust It has been a great year for The Q Trust who smashed their £1 million fundraising target and are now well on their way to raising £1.5 million for us. Highlights included The Q Ball at The Saatchi Gallery that raised a fantastic £225,000, and Guy Weston’s epic cycle ride from London to Mallorca, which raised an astounding £120,000. A big thank you to everyone who continues to support The Q Trust.

Research event 2010 saw our first annual research event, which was held at the Royal Society of Medicine in London. Trusts and supporters with a particular interest in research heard top scientists describe the latest advances in their work. Hosted by Lord Walton, the reception gave three researchers the opportunity to meet the people who help fund their work: Professor page 24

Kate Bushby, Dr Peter Zammit and Dr Aurelie Goyenvalle delivered impressive reviews of their work to an audience of both scientists and non-scientists alike.

The President’s Club Our Vice Presidents continue to offer the charity valuable advice, guidance and support. We have seen an increase in Vice Presidents organising their own fundraising events and making valued introductions to potential corporate and individual supporters.

Fundraising and Development Board In 2010 we established a new Fundraising and Development Board. Set up with the aim of supporting the work of the Muscular Dystrophy Campaign’s fundraising team, including our President, Vice Presidents and the Chair of the Q Trust, we expect that the Board will ensure an effective, co-ordinated approach to fundraising as well as contributing to the development of the fundraising strategy.

Thank you to all the individuals and trusts that have donated funds to the Muscular Dystrophy Campaign from funding the scientists of the future to providing equipment for children, adults and families. Your support is not only vital, but very much valued.

Mark was a brilliant, funny and generous man who worked tirelessly to raise awareness and support for others with muscle disease, right up until he died in 2005 as a result of his condition. Mark’s life motivated me to raise money to fund care for people with muscle disease and research into effective treatments and cures.

Guy Weston (pictured right)

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people are at the heart of everything we do

It’s all about our people We rely on volunteers for a wide range of support, and this comes from a wealth of individuals and families, friends, scientists and health professionals all around the UK. At last year’s Muscular Dystrophy Campaign National Conference, we recognised the outstanding achievements of these amazing supporters:

Inspiring Person of the Year Among the Muscular Dystrophy Campaign’s 130 London Marathon runners in 2010, was one extra special runner attempting the legendary 26mile route. Paul McIntyre, 20, (pictured below) from Callander in Perthshire has Becker muscular dystrophy and had never previously attempted even to walk anywhere near as far. However, he completed his own personal challenge by completing the course within two days – a full day ahead of schedule!

www.muscular-dystrophy.org

Fundraiser of the Year Roger Stewart, 59, from York turned his love of classic cars into a business dedicated to raising money for the Muscular Dystrophy Campaign. Together with close friend Chris Tindal he started Reece Wedding Cars, a chauffeur service for brides. Named after Roger’s fiveyear-old grandson Reece, who has Duchenne muscular dystrophy, the thriving company donates all profits to the Muscular Dystrophy Campaign.

Young Person of the Year Diagnosed with Duchenne muscular dystrophy at the age of seven, Jonathan Gilmour, 23, from Hampshire has never allowed his increasing physical difficulties to stand in the way of his studies. With A grades all through school, he went to the University of Cambridge where he got a first-class

honours degree and is working towards a PhD in Jewish philosophy. Despite spinal fusion surgery during his studies, Jonathan pressed on regardless, winning academic awards and scholarships.

Campaigners of the Year A year of incredible achievements in our campaigning work led to Phillippa Farrant and Ray Thomas being named as joint winners of this category.

Phillippa’s son, Dan, has Duchenne muscular dystrophy and she battles constantly for the medical care he needs. Phillippa lives in Eastbourne, is a trustee of the Muscular Dystrophy Campaign, chairs the South East Coast Muscle Group, and chairs the Duchenne Family Support Group.

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Year award. Based at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry, Shropshire, Dr Quinlivan has fought her patients’ corners when requests for equipment, wheelchairs and house adaptations have gone unheeded.

Research Ambassador of the Year An active campaigner for our charity since the late 1960s, Ray Thomas had two sons with Becker muscular dystrophy, both of whom have tragically passed away.

Outraged by the lack of support and specialist care that could have improved his sons’ quality of life, Ray (pictured in action on page 31) was at the core of an in-depth inquiry by the Welsh Assembly’s Cross Party Group for Muscular Dystrophy.

Carer of the Year Matthew Morris is a Year 4 pupil from Warrington. Brother Josh, four, was diagnosed with Duchenne muscular dystrophy at the age of two, and Matthew helps his mum and dad look after him.

When Josh started primary school, Matthew was devastated to hear other children calling him names so he stood up in front of his school to read out a letter he’d written about Josh’s “poorly muscles” and why it was upsetting to hear him being called names.

Clinician of the Year By showing huge dedication to her patients and unparalleled levels of commitment to providing and improving care services, Dr Ros Quinlivan was the recipient of our Clinician of the page 27

Helen Stockdale is our inaugural Research Ambassador of the Year in recognition of her work involving patients and members of the public in our research work. Thanks to her efforts, families will continue to have a greater say in the research work that we fund. A mother of a son with Becker muscular dystrophy, Helen chairs our new Lay Panel.

Junior Fundraiser of the Year Jack Franklin, 13, from East Yorkshire became the star of one of our most successful appeals this year, raising in excess of £15,000. His honest and emotional letter captured the hearts of almost everyone who received it as he described what it’s like to have Duchenne muscular dystrophy.

Family of the Year The Atkinson family Richard, Gillian, Austin and Esther Atkinson gave an extraordinary amount of time to our fundraising efforts over the past year, supporting the charity’s That Glorious Noise classical concert series, featuring Russell Watson. Richard and Gillian were involved in planning and organising the four concerts and Austin, five, who has congenital muscular dystrophy, went on stage at Meridian Park for Russell Watson to sing happy birthday to him.

Support Group of the Year The FSH-MD (facioscapulohumeral muscular dystrophy) Support Group had a tremendous year, celebrating its 25th anniversary by growing its membership, adding new groups and introducing new events to its calendar.

Volunteer of the Year Michael McClintock gave much time, dedication and passion to promote the Four Course Classic throughout Northern Ireland. Michael, who has FSH muscular dystrophy, volunteered full-time for over four months, travelling throughout the country, working with the media and even driving a Golf Monthly journalist across the country in a Top Gear-style challenge, all to recruit golfers and make sure golf courses were signed up to the golf marathon event.

Michael also managed to convince top professionals Rory McIlroy, Darren Clarke and US Open winner Graeme McDowell to give their backing to the event.

Lifetime Contribution Award Joan Taylor is a deserving winner of this award. She started fundraising for us in 1961 and since then has led the Kings Heath branch to raise a staggering £350,000. Along with husband John, who had Becker muscular dystrophy, Joan has been a driving force behind this branch. Her daughter now runs the branch, so the Taylor dynasty continues and Joan’s legacy will live long.

people are at the heart of everything we do

Get involved We value the support of families, friends, scientists, researchers, campaigners, corporate and individual donors and supporters. Our growing community keeps us focused on our vital work, and helps us ensure our work is relevant. Join our community – you’ll be most welcome!

Join a Muscle Group to help secure new services With regular meetings all around the UK, Muscle Groups are made up of individuals and families affected by muscle-wasting disease, local clinicians and MPs. (The Northern Ireland Muscle Group was launched in spring 2011; pictured below right.) We co-ordinate the meetings and each focuses on ensuring that necessary specialist neuromuscular services are available, accessible and relevant. Call Jen Taylor on 020 7803 2853 or email campaigns@muscular-dystrophy.org

Can you introduce us?

If you have links with a company, community group, trust or foundation that could support the charity, then please do pass the details on to Danielle Bidos of our fundraising team on 020 7803 4816 or fundraising@muscular-dystrophy.org

Chat with us We have a growing and active online community. Follow us on Twitter, join us on Facebook, sign in to any of our discussion forums on TalkMD or follow our campaign and Trailblazers blogs.

We love to hear what interests and concerns you have, and you’ll find the community very friendly and welcoming!

www.muscular-dystrophy.org

Tell us what you like Talk Research is a group of people affected by muscle-wasting disease and their families, who advise us on research communication. A lot of this is done by email, but the group also meets about once a year in London to talk about research communication in more depth. If you’d like to be involved, call Kristina Elvidge on 020 7803 4813 or email research@muscular-dystrophy.org

Then read all about it!

Subscribe to our flagship publications.

Target MD now comes out four times a year and includes Target Research in each issue. Many of our readers prefer to read the magazine in print, rather than online, and then to share it within their schools, GP practices and community groups. Contact Ruth Martin at targetmd@muscular-dystrophy.org or call 020 7803 4836 or write to us at 61 Southwark Street, London SE1 0HL.

Tribute Funds for a loved one Set up a Muscular Dystrophy Campaign Tribute Fund online and invite friends and family from all around the world to support the Fund in celebration of the life of someone special. To find out more call our fundraising hotline on 0845 8729058 or email volunteerfundraising@musculardystrophy.org

A gift of time We value the work of volunteers throughout the charity. No matter where you live in the UK, if you have some time to spare and would like to help us raise awareness and funds for the charity, do call our fundraising hotline on 0845 8729058 or email volunteerfundraising@musculardystrophy.org to find out more.

A future gift, a lasting memory Including a gift in your Will to the Muscular Dystrophy Campaign is more than a donation. It sends out a strong and very personal message of hope for the future. To find out more about leaving us a gift in your Will please call Sarah Greenwood on 020 7803 4834 or email s.greenwood@muscular-dystrophy.org page 28

Professional networks

Peer support

We work closely with professionals, such as physiotherapists, occupational therapists and teachers and run networks to help them share best practice and to have the most relevant and current specialist information and advice for their clients and communities. To find out more, contact 0800 652 6352 (freephone) or email info@muscular-dystrophy.org

We understand the value of peer support, and offer a number of opportunities for adults with muscle-wasting disease to connect with others in similar situations.

A few such examples are Living with MD Days, MD Links and condition specific networks. Contact 0800 652 6352 (freephone) or email info@musculardystrophy.org to find out more.

Corporate partnerships

Campaign for change

If you work for or own a company and would be interested in working in partnership with us or adopting us as your Charity of the Year, please contact Nura Makki on 020 7803 4822 or email n.makki@muscular-dystrophy.org for more details.

We are committed to ensuring that people with muscle-wasting disease have access to the specialist services they require. Add your voice to our campaigns by getting your local MP involved, participating in our parliamentary events or being a media volunteer. Contact Jonathan Kingsley at campaigns@muscular-dystrophy.org

Be a Trailblazer Our young campaigners’ network, the Trailblazers, work hard to highlight issues faced by young disabled people particularly around access to transport, leisure facilities, tourism and education. Find out more at trailblazers@muscular-dystrophy.org or call Bobby Ancil on 020 7803 4807.

Fundraise for us anywhere in the UK Have some fundraising ideas of your own, or would you prefer to run one of our fundraising events like a Question of Support, or Come Dine With Us? Either way, we’ll give you all the support you need. Contact Mark Casey on 0845 8729 058 or email volunteerfundraising@ muscular-dystrophy.org

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people are at the heart of everything we do

Spreading the word We work closely with our colleagues in research, campaigns, care, education and information teams to ensure we deliver the right messages at the right time to our supporters, their families, professionals and the general public

press. It was the lead story on BBC’s Newsnight, which featured Jane and Mark Field, and their son Murray, who has Duchenne muscular dystrophy.

Our online presence

Looking forward

We are continually updating and adding new information to our website for families, health professionals, scientists and the wider community to ensure we are giving the best and most up-to-date information about muscular dystrophy and muscle-wasting disease, and how we can help. As our primary means of communication, our website now receives more than 35,000 visits each month from more than 120 countries around the world.

Social media We launched TalkMD, on our website, in August 2010 and have almost 1,000 registered users. The forum has covered more than 580 topics, with more than 4,500 posts recorded.

Our Facebook page and Twitter are equally active and busy, with currently over 7,000 friends on our Facebook page and over 1,600 followers on Twitter.

Your stories We launched Your stories section on our website last year, as a place where you can find supporters sharing their stories via blogs, articles, questions and answers

and video blogs. If you’d like to share your story and encourage others, please email hello@muscular-dystrophy.org

Leaving a legacy Legacies continue to be a valuable source of income for the charity, totalling £860,000 in the last year. Thanks to the overwhelming kindness and generosity of those who leave us gifts in their Wills, we can plan long into the future.

Making our headlines A new annual subscription for our flagship publication, Target MD, was introduced in May 2010 to cover the costs of printing and mailing to supporters. We also introduced an online version of the magazine that utilises page-turning software making it easy for people with muscle weakness to access and view it on our website.

In the year ahead, our main marketing and communications objectives are: • to be the first port of call for anyone diagnosed with one of the 60 conditions that we cover, the media and specialist professionals • to place the charity as experts on muscle-wasting disease to families, media, supporters and professionals • to increase net income by reducing expenditure and increasing return on investment on all fundraising activity • to continue to develop our

e-communications, social media and online channels to increase the number of ways we can engage with supporters and the wider community.

Leading the headlines in areas of research, fundraising, campaigning, advocacy and care When our 2010 Patient Survey: State of the Nation report was launched last year, we received an extraordinary amount of national media coverage in both broadcast media and the

I have found this little corner of the web the best therapy ever. You feel like talking, you talk. No pressure. And everyone has or is close to the symptoms of MD.

A TalkMD member

www.muscular-dystrophy.org

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people are at the heart of everything we do

Joseph Patrick Trust The Joseph Patrick Trust (JPT), the welfare trust of the Muscular Dystrophy Campaign, was founded in 1986. Since its formation, it has given over £6 million to fund over 6,000 pieces of equipment to help promote mobility and independence, for people with muscle-wasting disease. Grants towards the cost of specialist equipment, such as powered wheelchairs, adapted computers and electric beds, are awarded to adults and children throughout the UK with muscle-wasting diseases.

Awards In 2010/2011, the JPT made 155 awards worth £89,640 towards the cost of specialist equipment. We value the generous donations and support of the following donors, without whom we would not have been able to award these vital grants: • Anton Jurgens Charitable Trust • Childwick Trust • Constance Green Foundation • Coutts Charitable Trust • Evan Cornish Foundation • Francis Winham Foundation • Keith Baker Charitable Will Trust 2007 • Maria Holland and St Joseph’s Charity • Maud Elkington Charitable Trust • Rothley Trust • Rowlands Trust • Stanley Thomas Johnson Foundation • Woodroffe Benton Foundation • Yorkshire Building Society Charitable Foundation Our golf-scheme partners have supported us again this year to help fund wheelchairs. We would also like to give special thanks to Spifox who helped us to fully fund two awards.

Silver anniversary

In spring, the JPT celebrated its 25th anniversary. Mr Alexander Patrick started the Trust in 1986 in memory of his father, Joseph Patrick, who was a founder of the Muscular Dystrophy Campaign. We are hugely grateful to Alexander and all the Patrick family and we offer congratulations on the JPT’s 25th anniversary and our thanks for their valued and ongoing support of the JPT and our work. www.muscular-dystrophy.org

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Tesco Charity of the Year partnership In 2010/2011, with the funding that came in through our 2009 Tesco Charity of the Year partnership, we were able to make a further 250 awards worth over £1.5 million to help fully fund equipment for children and young people aged 19 and under.

How to apply Applications are only accepted from, or on behalf of, people with muscular dystrophy or a related condition. Each application is reviewed on merit and the amount awarded depends on the number of applications and the annual budget. Contact Pat Copcutt to find out more and apply online at www.muscular-dystrophy.org/JPTonline or request an application form from JPTgrants@muscular-dystrophy.org or 020 7803 4814.

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All terrain for Dan Thanks to a Tesco charity partnership grant, 11-year-old Dan Southall (pictured below and left) got an All Terrain Extreme 8 wheelchair, designed to go where no other chairs can go – over sand, snow, mud, grass and steep hills. It didn’t take Dan long to test the genuine four-wheel drive wheelchair’s capabilities. Here’s what his mum, Penny, said: “He’s having a fantastic time in the chair. So far it’s performed brilliantly on the beach, in the woods and up on the South Downs and it’s enabled us to do things as a family that we couldn’t do before, thanks so much!”

people are at the heart of everything we do

Financial summary We had a successful year in fulfilling our charitable objectives in a very difficult economic climate. The total resources expended were £7,938k.

The expenditure was funded through fundraising activities and the Tesco Charity of the Year partnership, with total incoming resources of £7,162k, the remainder being funded from reserves.

Incoming Resources 2010-11 Charitable activities, £88,000 Investment income, £146,000

Other, £20,000

Government Grants, £180,000 Activities to generate funds, £1,576,000

Donations, £4,312,000

Legacies, £840,000

Resources expended Costs of activities to generate funds, £1,177,000

Care, £3,323,000

Fundraising, £1,796,000

Governance, £36,000 Communication, £331,000 Medical research, £1,275,000 www.muscular-dystrophy.org

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Financial statements Muscular Dystrophy Group of Great Britain and Northern Ireland Year ended 31 March 2011 Operating as Muscular Dystrophy Campaign (MDC) (a Company limited by guarantee 705357, a Registered Charity 205395 and Registered as a Charity in Scotland SC039445)

Report of the Board of Trustees 2010/11 What the Muscular Dystrophy Campaign does – core purpose and activities Vision: a world where muscle disease is not a barrier to length or quality of life.

Mission: to lead the fight against muscle disease.

Objects of the Muscular Dystrophy Campaign for the Public Benefit: the charity is established to promote research into muscular dystrophy and allied neuromuscular conditions; to promote the provision of care and treatment to those affected; to assist those who care for persons affected by such conditions; to provide education and training to persons affected, and to raise the awareness of the public on any matter relating to the charity’s objects.

Public Benefit: the Charity Trustees consider that they have complied with their duty in section 4 of the Charities Act 2006 to have due regard to Public Benefit guidance published by the Charities Commission and that the benefits that the charity provides are not unreasonably restricted.

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Significant activities this year Partnerships

Following our successful Tesco Charity of the Year partnership in 2009, we have continued to build strong links with our supporters and have forged new partnerships. These include Next plc, Harley Davidson and Genzyme.

Campaigns The Department of Health announced a national neuromuscular workplan – our first ever national development strategy from Government.

The Mackie Report, launched in Scotland, and the Thomas Report, launched in Wales, followed inquiries into neuromuscular services conducted by the Cross Party Groups for Muscular Dystrophy, which highlighted gaps in services.

Our patient survey – State of the Nation – secured the lead spot on BBC’s Newsnight.

Our network of campaigning Muscle Groups expanded across the country, with 850 members actively campaigning for service improvements.

Trailblazers – the charity’s award-winning young campaigners network – took

on a budget airline over their wheelchair restrictions and also launched the first parliamentary group for young disabled people.

Care, support and NHS investment More neuromuscular care advisors in post than ever before, with NHS funding agreed for 30 neuromuscular care advisors across the UK. Advocated on behalf of 60 children and adults to ensure their rights for adequate service provision.

Published MD Links Service Guide and the second edition of the Wheelchair Guidelines for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions.

10,420 requests for literature and 3,392 requests for telephone and email support.

Held seven Living with MD days, one CMD (congenital muscular dystrophy) patient day, and delivered information at five partner charity conferences.

people are at the heart of everything we do

NeuroMuscular Centre

Communications

Increased the number of patients being seen at the centre, providing more than 8,600 physiotherapy treatments.

Saw 20 students with muscular dystrophy graduate with vocational qualifications from NMC Design+Print, our award-winning social enterprise.

Continued to develop our plans for other neuromuscular centres with a focus on sustainable income to underpin any proposed centres.

Launched our online forum TalkMD, a peer-to-peer support community for people living with muscle-wasting disease.

Launched the charity’s Facebook and Twitter profiles to engage more in social media channels.

Introduced an annual subscription for Target MD; and had our most successful direct marketing appeal to date with the Chief Executive’s letter mailing in January 2011 that raised more than £27,000.

Research Managed 29 active research projects covering 18 different conditions and we also awarded four new PhD studentships and three pump-priming grants.

Communication with our families about news of the development of treatments continues to be a priority.

Published and distributed our third edition of Target Research, and on our increasingly popular website pages we included over 50 research news stories, information about 72 clinical trials, reports of completed grants and a new section about patient registries.

Organised the fourth Neuromuscular Translational Research Conference in London, in partnership with the MRC Centre for Neuromuscular Disease.

Participated in a number of international projects, such as TREATNMD and Bio-NMD, to ensure that the voice of our families is heard.

www.muscular-dystrophy.org

Achievements and performance

This has been a very challenging year and, like many organisations, we have found it difficult to generate unrestricted income in the current economic climate. Although the ‘Charity of the Year’ partnership with Tesco plc raised a magnificent £5,200,000, these funds were restricted to the purchase of wheelchairs and equipment for children (helping more than 700 children to date). We have therefore maintained vital services during 2010/11 by drawing on our reserves and we are keeping all services and activities under review in the light of current income and future projections.

Each year the charity sets open and transparent objectives for service outcomes in research, care, support, advocacy and campaigning.

Our achievements this year are shown on pages 39 and 40.

Our future objectives for 2011/12 are set out in Section 3.

Future plans

The Muscular Dystrophy Campaign continues to focus on five areas for which internal performance indicators have been set to enable performance to be effectively monitored and evaluated: supporting ground-breaking research into cures and treatments and communicating research progress to our stakeholders providing information and support services to families, including advocacy support campaigning for improved health care and community care as well as improved access to a wide range of services providing grants for wheelchairs and equipment to enable individuals to live independently providing specialist education and development for health professionals.

Financial review

Reserves policy: It is considered that the charity should hold free reserves to provide sufficient protection to cover core costs including salaries and central overheads to meet its forward commitments should it suffer an immediate or unforeseen drop in income. Due to the extreme fundraising, investment and legacy environments over the past 12 months reserves are currently sufficient to provide cover for one month.

While the immediate economic outlook remains extremely demanding, it is intended that reserves will be built up over the next few years to provide three months’ cover for core costs including salaries and central overheads to meet its forward commitments.

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Investment policy: The overall objectives are to create sufficient income and capital growth to enable the charity to carry out its purposes consistently year by year with due and proper consideration for future needs and the maintenance of, and if possible, enhancement of the value of the invested funds while they are retained. Both capital and income may be used at any time for the furtherance of the charity’s aims.

The objectives are to be achieved by investing prudently in a broad range of fixed interest securities and equities which are quoted on a Recognised Investment Exchange and Unit Trusts and OEICs (open ended investment companies) which are authorised under the Financial Services and Markets Act 2000.

There should be no direct investment in the following: derivative contracts including futures and options; commodities and derivatives thereof; contracts for differences; hedge funds; structured products.

Ethical considerations: It has been decided not to invest in tobacco manufacture and distribution. Trustees reserve the right to exclude companies or industry sectors that carry out activities contrary to the aims of the charity or from holding particular investments which damage the charity’s reputation. Trustees expect the fund manager to have considered the suitability of investments of the same kind as any particular investment proposed to be made or retained.

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Structure, governance and management

Governing document: The Muscular Dystrophy Group of Great Britain and Northern Ireland, operating as the Muscular Dystrophy Campaign, is a company limited by guarantee governed by its Memorandum and Articles of Association dated 2 September 1961 and as amended on 24 October 2007 to allow for current arrangements and charity law best practice. The Muscular Dystrophy Campaign is registered as a charity with the Charity Commission and the Office of the Scottish Charity Regulator and anybody over the age of 18 who supports and promotes the objects of the charity can become a member.

The Muscular Dystrophy Campaign has a wholly owned trading subsidiary, Muscular Dystrophy Group (Trading) Ltd. Appointment of trustees: The Muscular Dystrophy Campaign has between 7 and 17 trustees. The selection, appointment, retirement and duties of trustees are described in detail in the Memorandum and Articles of Association (article 29-44 et al).

Trustee induction and training: New trustees receive an induction pack of documents and attend a briefing day that covers the Muscular Dystrophy Campaign’s Memorandum and Articles of Association, their duties as trustees under charity law, the Muscular Dystrophy Campaign’s operating plans, recent financial performance and organisational structure. During the induction day and over time they meet and form working relationships with staff.

Organisation: The Board of Trustees

is ultimately responsible for the management of the Muscular Dystrophy Campaign. The Board meets quarterly and there are sub-committees covering key areas of activity – research (Medical Research Committee, MRC), care (Services Development Committee, SDC), finance (Finance, General Purposes and Audit Committee, FGP&A) and appointments (Appointments and Remuneration Committee). A Chief Executive, with delegated authority, is appointed by and accountable to the trustees for managing the day-to-day operations of the charity and the delivery of operational plans.

Members: The Muscular Dystrophy Campaign has a body of around 175 shareholders who carefully monitor the charity’s progress. They are volunteers drawn from the various stakeholders that the charity represents; individuals, families, scientists, doctors, MPs, Lords and others. Trustees are members. If you are keen on following our work and would be interested in becoming a member, please contact the charity.

Related parties: The Joseph Patrick Trust (JPT, an unincorporated charitable committee, registered charity number 294475) is the welfare arm of the Muscular Dystrophy Campaign which is its sole corporate trustee. Constituted on 30 April 1986 it provides direct financial assistance in the form of welfare grants to families living with muscular dystrophy throughout the UK. The JPT receives most of its income from the Muscular Dystrophy Campaign and from its own investments.

The Neuromuscular Centre (NMC, company number 2806607, registered people are at the heart of everything we do

charity number 1023606), incorporated on 1 April 1990 as a company limited by guarantee and controlled by the Muscular Dystrophy Campaign, which is its sole corporate trustee, provides employment, support, training and physiotherapy to people affected by muscular dystrophy. Day-to-day management of the NMC rests with its management committee led by its Chief Executive. The NMC has a wholly owned trading subsidiary, NMC Trading Limited.

The Muscular Dystrophy Campaign maintains extremely close working relationships with partner charities who assist people living with muscular dystrophy and related muscle diseases.

Risk management: The trustees have a comprehensive risk management strategy based upon a detailed risk register which is subject to constant scrutiny and regular review.

Key components include a robust reserves policy and a plan for managing reputational risk. Risks are reviewed against the strategic aims of the organisation and are evaluated against controls in place. Action plans, to minimise or remove risk where possible, are in place and kept under review.

Primary risks: • Downturn in income.

• Loss of key data – financial, marketing and operational.

• Reputational damage.

• Loss of key personnel.

www.muscular-dystrophy.org

Provision of information to auditors

Each person who is a director at the date of approval of this report confirms that: so far as the director is aware there is no relevant audit information of which the company’s auditors are unaware; and the director has taken all the steps that he/she ought to have taken as a director in order to make himself/herself aware of any relevant audit information and to establish that the company’s auditors are aware of that information; and this confirmation is given and should be interpreted in accordance with the provisions of Section 418 of the Companies Act 2006.

By order of the Board of Trustees

Bill Ronald Chairman

8 September 2011

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Last year we said we would…

Objectives 2010/11

To empower those living with muscle-wasting disease Events: • to run Information Days and National and Scottish Conferences • to work closely with partner charities •to enable individuals and families to provide peer-to-peer support for each other Welfare grants: •to manage JPT budgets to support individuals • to support Campaigns wheelchair provision work to obtain greater financial input from health authorities and Wheelchair services Living with MD: • to provide the opportunity for adults with muscle-wasting disease, living outside London, to attend self- management courses • to support new projects to develop NMC centres in North East and West Midlands New family recruitment: • With a particular emphasis on parents and children, continue to build relationships over the next five years.

To work in partnership with healthcare professionals to ensure those living with muscle-wasting disease receive the highest quality of care possible Clinical research: • to implement new strategy to develop clinical research and training Communications: • to develop and launch bi-monthly communications to professionals, page 39

partner charities and support groups Regional care advisors: • to continue to grow the NHS investment, working with the campaigns team Publications: • to ensure Duchenne ‘Standards of Care’ document is widely distributed and used to enhance services urgently • to promote Transition Guidelines and Adult Self-Management to families and professionals Professional networks: • to continue to grow professional networks for physiotherapists, occupational therapists and schools • to run professional training days for networks National neuromuscular database: • to expand the natural history databases to include adult conditions.

To provide employment, training and physiotherapy services to people with muscle-wasting disease Physiotherapy: • to create a successful NMC physiotherapy social enterprise • to achieve full cost recovery for physiotherapy service Home workers: • to consolidate the team of home workers into a successful productive part of NMC Design+Print NMC North East and NMC West Midlands: • to continue to develop the project in Newcastle – target for this year is to launch services including physiotherapy

and training – and also support new project in West Midlands Self-advocacy and support • to launch new user-led advocacy service • to roll out New Options’ programme offering supported moves nearer to employment for at least 30 service-users.

To facilitate research into cures, treatments and disease management Grants programme: • to continue to award grants into basic and clinical research • to award PhD studentships • to award travel grants • to develop partnerships with government bodies and other charities to fund research • to provide platforms for scientists to share knowledge and to collaborate • to organise a national scientific conference • to collaborate internationally with charitable organisations (European Neuromuscular Centre and condition- specific support groups) Research communications: • to grow online content • to grow offline materials • to improve and grow clinical trial database •to involve service users in research communications and research decision-making.

people are at the heart of everything we do

To educate, inform and lead the discussion of muscle-wasting disease in order to raise public awareness and better inform statutory decision-making Policy and campaigning: • to build parliamentary support for our campaigns to ensure access to specialist services at national and regional levels • to ensure NHS commissioners provide access to specialised services at national and regional levels for all people living with muscle-wasting disease • to involve people living with muscle- wasting disease in all campaigns, including young campaigners, and ensure their voices are heard Advocacy: • to provide support to individuals and families in need; and to influence research policy in the UK and EU.

Marketing and communications: • to develop an online forum for adults living with muscle-wasting disease • to build relationships with the media to help us achieve national and regional media coverage of muscular dystrophy and related conditions, and the charity • to give opportunity through our communications for people living with muscle-wasting disease to share their stories with one another and the wider community.

Next year…

Research: • to continue funding high-quality research projects • to support translational research www.muscular-dystrophy.org

• to consolidate and develop lay involvement • to further improve our research communication programme • to support the set-up of patient registries • to strengthen our relationships with key players in the field of neuromuscular research.

Policy and campaigning: • to boost NHS investment and neuromuscular care advisor support, ensuring all have access to specialist care, backed by parliamentary work • to reach out to and work with more people affected by muscle-wasting disease • to expand the focus of Trailblazers, with the cinema report, the work of the All Party Parliamentary Group for Young Disabled People and the employment report.

Education and development: • to ensure the best possible health and social care services for people with muscle-wasting disease by working in partnership with professional bodies and external agencies • to develop a UK-wide conference and seminar programme for health and social care professionals, and present our national, Scottish and future Welsh conferences • to ensure that doctors and other health and social care staff can increase their knowledge of muscular dystrophy and related conditions, through developing and maintaining the education and professionals’ section of our website.

Marketing and communications: • to be the first port of call for anyone diagnosed with one of the 60 conditions that we cover, the media and specialist professionals • to place the charity as experts on muscle-wasting disease to families, media, supporters and professionals • to increase net income by reducing expenditure and increasing return on investment on all fundraising activities • to continue to develop our e-communications, social media and online channels to increase the number of ways we can engage with supporters and the wider community.

Fundraising: • to generate sustainable income to meet 2011/2012 targets and fund the charity’s planned activities • to grow our support across the UK, by establishing new volunteer fundraising groups and building new partnerships with companies, trusts, groups and individuals • to maintain the highest level of support and care for our supporters, new and existing, to ensure efficient returns on fundraising investment.

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Statement of Trustees’ Responsibilities The Trustees are responsible for preparing the Trustees’ Report and the financial statements in accordance with applicable law and regulations.

Company law requires the trustees to prepare financial statements for each financial year in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards) and applicable law.

Under company law the trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charitable company and of its

net incoming/outgoing resources for that period. In preparing these financial statements, the trustees are required to: • select suitable accounting policies and then apply them consistently; • make judgments and estimates that are reasonable and prudent; • state whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements; • prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue to operate.

The Trustees are responsible for keeping proper accounting records that are sufficient to show and explain the charitable company’s transactions and disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006.

They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps.

Independent Auditors’ Report to the Members of the Muscular Dystrophy Group of Great Britain and Northern Ireland We have audited the financial statements of the Muscular Dystrophy Group of Great Britain and Northern Ireland for the year ended 31 March 2011 which comprise the Group Statement of Financial Activities, the Group and Company Balance Sheets, the Group Cash Flow Statement and the related notes numbered 1 to 13.

The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

This report is made solely to the charitable page 41

company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and to the charitable company’s trustees, as a body, in accordance with section 44(1c) of the Charities and Trustee Investment (Scotland) Act 2005. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the company’s members as a body, for our

audit work, for this report, or for the opinions we have formed.

Respective responsibilities of trustees and auditor As explained more fully in the Statement of Trustees’ Responsibilities, the trustees (who are also the directors of the charitable company for the purpose of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view.

We have been appointed as auditor under section 44(1c) of the Charities and Trustee people are at the heart of everything we do

Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts.

Our responsibility is to audit and express an opinion on the financial statements in accordance with applicable law and International Standards on Auditing (UK and Ireland). Those standards require us to comply with the Auditing Practices Board’s Ethical Standards for Auditors.

Scope of the audit of the financial statements An audit involves obtaining evidence about the amounts and disclosures in the financial statements sufficient to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or error. This includes an assessment of: whether the accounting policies are appropriate to the company’s circumstances and have been consistently applied and adequately disclosed; the reasonableness of significant accounting estimates made by the directors; and the overall presentation of the financial statements.

In addition, we read all the financial and non-financial information in the Trustees’ Impact Report to identify material inconsistencies with the audited financial statements. If we become aware of any apparent material misstatements or inconsistencies we consider the implications for our report.

www.muscular-dystrophy.org

Opinion on financial statements In our opinion the financial statements: • give a true and fair view of the

state of the Group’s and the charitable company’s affairs as at 31 March 2011 and of the group’s incoming resources and application of resources, including its income and expenditure, for the year then ended; • have been properly prepared

in accordance with United Kingdom Generally Accepted Accounting Practice; and • have been prepared in accordance with the requirements of the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and Regulation 8 of the Charities Accounts (Scotland) Regulations 2006.

Opinion on other matter prescribed by the Companies Act 2006 In our opinion the information given in the Trustees Impact Report for the financial year for which the financial statements are prepared is consistent with the financial statements.

• the parent charitable company financial statements are not in agreement with the accounting records and returns; or • certain disclosures of trustees’

remuneration specified by law are not made; or • we have not received all the

information and explanations we require for our audit.

Michael Hicks

Senior Statutory Auditor For and on behalf of Crowe Clark Whitehill LLP Statutory Auditor London 20 September 2011 Crowe Clark Whitehill LLP is eligible to act as an auditor in terms of section 1212 of the Companies Act 2006.

Matters on which we are required to report by exception We have nothing to report in respect of the following matters where the Companies Act 2006 or the Charities Accounts (Scotland) Regulations 2006 (as amended) requires us to report to you if, in our opinion: • the parent charitable company has not kept adequate accounting records; or

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Consolidated Statement of Financial Activities for the year ended 31 March 2011 Notes Incoming resources Voluntary income Donations Tesco donations Government grants Legacies Activities to generate funds Investment income Charitable activities Other incoming resources Gain in disposal of other fixed assets

7

Total incoming resources

Unrestricted Funds £000

Restricted Funds £000

2010-11

2009-10

£000

£000

1,910 180

729 1,673 -

2,639 1,673 180

2,323 3,309 251

840

-

840

1,400

1,576 144 88 20 -

2 -

1,576 146 88 20 -

1,444 129 412 (10)

4,758

2,404

7,162

9,258

Resources expended Costs of generating voluntary income Fundraising Tesco

2 2

1,796 -

-

1,796 -

1,023 883

Cost of activities to generate funds

2

1,177

-

1,177

1,701

2,973

-

2,973

3,607

1,340 702 316

432 1,551 573 15

1,772 1,551 1,275 331

2,189 2,426 1,307 363

2,358

2,571

4,929

6,285

Charitable activities Provision of care Tesco care Pursuit of knowledge Communication

2 2 2 2

Total

36

-

36

32

Total resources expended

5,367

2,571

7,938

9,924

Net (outgoing) resources before transfers

(609)

(167)

(776)

(666)

72

(72)

-

-

(537)

(239)

(776)

(666)

7

159

15

174

792

(378)

(224)

(602)

126

Total funds brought forward

11

1,012

1,752

2,764

2,638

Total funds carried forward

11

634

1,528

2,162

2,764

Governance costs

2

Transfers between funds Net (outgoing) resources Other recognised gains/losses Gain on investment assets Net movement in funds

All income and expenditure derive from continuing operations. There are no recognised gains or losses other than those disclosed above. page 43

people are at the heart of everything we do

Consolidated Balance Sheet at 31 March 2011

Fixed assets Tangible assets Investments

Notes

Group 2011 £000

Group 2010 £000

Company 2011 £000

Company 2010 £000

6 7

229 2,978

232 3,293

90 2,978

139 3,293

3,207

3,525

3,068

3,432

446 1,443

400 2,345

687 1,340

629 2,234

1,889

2,745

2,027

2,863

(2,934)

(3,506)

(2,876)

(3,447)

(1,045)

(761)

(849)

(584)

2,162

2,764

2,219

2,848

169 465

150 862

90 602

139 995

634 1,528

1,012 1,752

692 1,527

1,134 1,714

2,162

2,764

2,219

2,848

Total fixed assets Current assets Debtors Cash at bank

9

Total current assets Creditors falling due within one year

10

Net current (liabilities) Net assets Funds Unrestricted - Designated - General Restricted Total funds

11 11

Approved by the Board of Trustees on 8 September 2011 and signed on its behalf by:

Bill Ronald Chairman

www.muscular-dystrophy.org

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Consolidated Cashflow Statement for the year ended at 31 March 2011 2010-11 £000

2009-10 £000

(1,402)

607

(131) 489 358

(53) 20 18 (15)

(1,044)

592

(Decrease)/Increase in cash Net funds at 1 April 2010

(1,044) 2,345

592 1,753

Net funds at 31 March 2011

1,301

2,345

2010-11 £000

2009-10 £000

(776) 7 127 (46) (714)

(666) 10 178 307 778

(1,402)

607

1 Apr 2010 £000 2,256 89

Cash flow Movement £000 (142) (902) -

31 March 2011 £000 (142) 1,354 89

2,345

(1,044)

1,301

Net cash (outflow) inflow from operating activities (note a) Capital expenditure and financial investment Purchase of tangible fixed assets Proceeds from sale of tangible fixed assets Net investment disposals/additions Net cash inflow/(outflow) from capital expenditure and financial investment (Decrease)/ Increase in cash Reconciliation of net cash inflow to movement in net funds (note b)

Notes to cash flow statement (a) Reconciliation of net incoming resources to net cash inflow from operating activities

Net outgoing Resources Loss on disposal of fixed assets Depreciation (Increase)/decrease in debtors (Decrease)/increase in creditors Net cash (outflow)/inflow from operating activities (b) Analysis of changes in net funds

Bank overdraft Cash at bank and in hand at Head Office Cash at bank and in hand at branches

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people are at the heart of everything we do

1. Accounting policies Accounting convention The financial statements have been prepared under the historical cost convention with the exception of investments which are included at market value. The financial statements have been prepared in accordance with the Statement of Recommended Practice - Accounting and Reporting

by Charities (SORP 2005) issued in March 2005, applicable UK Accounting Standards and the Companies Act 2006. The principal accounting policies adopted in the preparation of the financial Statements are set out below.

Basis of consolidation Subsidiary undertakings are fully consolidated and hence these financial statements are referred to as ‘consolidated financial statements’. An unincorporated subsidiary charity (where the Muscular Dystrophy Campaign itself is the sole corporate Trustee) and non-autonomous branches are treated as part of the parent charity and are referred to as ‘company only’ financial statements. No Statement of Financial Activities (SOFA) is prepared for the Muscular Dystrophy Campaign only, as provided by the Companies Act 2006.

Income Incoming resources are recognised in the SOFA when the effect of the transaction results in an increase in the charity’s assets. This will be dependent on three factors: • Entitlement - when the Muscular Dystrophy Campaign has control over the rights to the resource, enabling it to determine its future application • Certainty - when it is virtually certain that the incoming resource will be received • Measurement – when the value can be measured with sufficient reliability Income received for a specific purpose is treated as restricted funds.

Where income is received subject to donor imposed conditions that specify a future time period in which the expenditure should take place, such income is deferred and recognised as a liability. It is released as income in the accounting period in which Muscular Dystrophy Campaign is allowed to expend the resource.

Fee income from services provided as part of charitable activities and income from commercial trading activities is recognised as earned when the related goods and services are provided.

Investment income is recognised on a receivable basis.

Donations and other voluntary income are recognised on receipt or accrued as income as soon as it is practicable and prudent to do so.

Income from Branches is included based on the annual returns by Branches.

These returns are independently examined locally in accordance with the Branch Constitution.

Grants are not recognised as receivable until the conditions attached to the grant have been fulfilled. Grants receivable in respect of expenditure on fixed assets are treated as restricted funds.

Legacies are taken into account when capable of financial measurement.

In the case of a pecuniary legacy this is on notification, and in all other cases when received.

Net investment gains and losses for the year, both realised and unrealised, are disclosed in the Statement of Financial Activities under Investment Income and Gains and Losses on Investment Assets.

www.muscular-dystrophy.org

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Expenditure Expenditure is recognised when and to the extent a liability is incurred or increased without a commensurate increase in assets or a reduction in liability.

All expenditure is recognised on an accruals basis and includes irrecoverable VAT where appropriate.

Grants awarded are recognised as a liability when the Muscular Dystrophy Campaign is under a legal or constructive obligation to a third party.

Charitable expenditure includes all expenditure incurred in pursuance of the Muscular Dystrophy Campaign’s objectives. The costs of these activities are divided between grants and other direct costs, including staff and other items. In addition, support costs have been allocated to each activity on the basis of expenditure incurred.

Taxation The Muscular Dystrophy Campaign, the Joseph Patrick Trust and the NeuroMuscular Centre (NMC) are registered charities and as such are exempt from corporation and income tax on their income and gains to the extent they are applied for charitable objectives.

Listed investments Listed investments are shown at the mid market value ruling at the date of the Balance Sheet and after taking into account any subsequent impairment in value. The Muscular Dystrophy Campaign has full discretion in its investment policy.

Tangible fixed assets and depreciation Improvements to leasehold property are depreciated over the full length of the lease. Depreciation is provided on all other tangible fixed assets on a straightline basis to write off the cost as follows: Leasehold premises: over length of lease Other assets: over 4 years Operating leases The charity provides for operating leases on property on an actual cost basis. Thus rent free periods on property are taken in the period to which they relate rather than be apportioned over the life of the operating lease itself. This policy is to offset the additional costs incurred by moving into new premises and reflects the inducement offered in that period by the landlord to let the property.

Pensions The Muscular Dystrophy Campaign offers defined contributions to employees’ pension arrangements. This is to an employee’s portable scheme. The amount charged to the SOFA in respect of pension costs is the contributions payable within the year. Differences between contributions payable and contributions actually paid are shown as accruals in the balance sheet.

Going concern After making enquiries, the trustees have a reasonable expectation that the charity has adequate resources to continue its activities for the foreseeable future. Accordingly, they continue to adopt the going concern basis in preparing the financial statements as outlined in the Statement of Trustees Responsibilities on page 41.

Muscular Dystrophy Group (Trading) Ltd donates by way of Gift Aid all profits to the parent Charity.

NMC Trading Ltd is subject to taxation on its taxable profits.

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people are at the heart of everything we do

2. Resources expended Direct costs Grants

Other

Support costs

2010-11

2009-10

£000

£000

£000

£000

£000

Generating funds Voluntary income costs Tesco fund Generated income costs

-

1,504 986

292 191

1,796 1,177

1,023 883 1,701

Total

-

2,490

483

2,973

3,607

82 1,512 1,594

1,403 39 1,442

287 287

1,772 1,551 3,323

2,189 2,426 4,615

905

163

207

1,275

1,307

-

277

54

331

363

Charitable expenditure Provision of care Care Welfare grants – Tesco Total Pursuit of knowledge Medical research Communication

2,499

1,882

548

4,929

6,285

Governance costs

Total charitable expenditure

-

-

36

36

32

Total expenditure

2,499

4,372

1,067

7,938

9,924

• ‘Direct costs’ include all costs incurred in delivering the relevant activity.

• ‘Support costs’ comprise the costs of the Chief Executive’s office, Finance, IT and Support Services Directorate and the Company Secretary as well Head Office property rental costs and other central overheads. These costs have been allocated across the activities on the basis of expenditure incurred for each of the activities.

• Provision of care includes training and physiotherapy activities undertaken by the NeuroMuscular Centre (NMC).

• ‘Welfare grants’ includes grants made through the Joseph Patrick Trust to individuals.

• In keeping with the policy of recognition of liability on the basis of grants committed and communicated to the recipients, the amount charged in the year covers the grant round that took place in 2010-11 and also includes committed spend for 2011-12.

• ‘Governance’ costs include audit fees of £32k (2009-10: £30k). Nine Trustees received reimbursement of their expenses incurred in travelling to attend the Muscular Dystrophy Campaign’s business amounting to £4k. (2009-10: £4k).

No Trustee received any remuneration during the year.

www.muscular-dystrophy.org

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3. Disclosure information 2010-11

2009-10

£000

£000

Remuneration of staff Wages and salaries Social security costs Pensions

2,377 226 105

2,608 229 113

Total

2,708

2,950

2 -

1 1 1

35 32 7

36 32 10

74

78

The average monthly number of employees during the period was 74, of whom there were the following higher paid employees as detailed below.

Earned between the ranges £60,000 to £70,000 £70,000 to £80,000 £80,000 to £90,000 £90,000 to £100,000 Number of staff by activity Direct charitable expenditure Fundraising and publicity Management and administration Total

Pension Schemes There were outstanding contributions of £13,000 (2009-10: £12,079) at the balance sheet date.

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people are at the heart of everything we do

4. Grant expenditure The Muscular Dystrophy Campaign awards four types of grant: • grants to fund medical research • grants to Muscle Centres (principally for clinical research) • grants to specific beneficiaries to enable them to purchase equipment to alleviate their condition, and other small welfare grants to individual beneficiaries dispensed by branches.

Pursuit of knowledge £000

Muscle Centres

Welfare grants £000

Total 2010-11 £000

Total 2009-10 £000

£000

Grants awarded in the year Grants cancelled in the year

977 (72)

73 (43)

1,601 (37)

2,651 (152)

4,371 (246)

Total

905

30

1,564

2,499

4,125

2010-11

2009-10

£000

£000

672

310

2010-11

2009-10

£000

£000

190

85 -

With the exception of welfare grants that are paid to individuals, all grants are paid to institutions. A list of grants to institutions is available from the registered office.

At the balance sheet date the charity had conditional grant commitments that have not been accrued in the accounts as the criteria relating to payment in subsequent years have not been met, as follows:

Payable between two and five years

5. Operating lease commitments The Muscular Dystrophy Campaign is committed to the following annual commitments under a non-cancellable operating lease on its Head Office at 61 Southwark Street, London.

Payable within one year Payable within two and five years

www.muscular-dystrophy.org

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6. Tangible fixed assets (a) Group Leasehold premises £000

Other assets

Total

£000

£000

Cost or valuation at 1 April 2010 Additions Disposals

426 50 -

569 81 (7)

995 131 (7)

At 31 March 2011

476

643

1,119

Depreciation at 1 April 2010 Provided for the year Disposals

321 20 -

442 107 -

763 127 -

At 31 March 2011

341

549

890

Net book value At 31 March 2011 At 31 March 2010

135 105

94 127

229 232

Leasehold premises £000

Other assets

Total

£000

£000

Cost or valuation at 1 April 2010 Additions Disposals

152 -

339 37 (7)

491 37 (7)

At 31 March 2011

152

369

521

Depreciation at 1 April 2010 Provided for the year

141 11

211 68

352 79

At 31 March 2011

152

279

431

Company

Net book value At 31 March 2011

-

90

90

At 31 March 2010

11

128

139

All tangible fixed assets are used in the promotion of the Muscular Dystrophy Campaign’s work; none are held for investment. Included in other assets are three portraits especially commissioned by the charity, they are held at a cost of £15,000.

In the opinion of the Trustees they are worth not less than this valuation and as such no depreciation is charged.

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people are at the heart of everything we do

7. Investments Group 2011 £000

Group 2010 £000

Company 2011 £000

Company 2010 £000

Market value at 1 April 2010

3,293

2,519

3,293

2,519

Net disposals/additions

(489)

(18)

(489)

(18)

2,804

2,501

2,804

2,501

174

792

174

792

Market value at 31 March 2011

2,978

3,293

2,978

3,293

Historical cost at 31 March 2011

2,483

3.011

2,483

3,011

Group 2011 £000

Group 2010 £000

Company 2011 £000

Company 2010 £000

2,449 356

2,658 435

2,449 356

2,658 435

2,805

3,093

2,805

3,093

111 62

138 62

111 62

138 62

2,978

3,293

2,978

3,293

Group 2011 £000

Group 2010 £000

Company 2011 £000

Company 2010 £000

131 15

112 17

131 13

112 17

146

129

144

129

Net investment gain (loss)

Spread of Investments The investments of the Muscular Dystrophy Campaign are held as follows:

Investments listed on a recognised Stock Exchange and Unit Trusts - UK Equities and other - UK fixed interest Cash on deposit awaiting investment Unlisted equities Total

The unlisted equity investment has been valued at its likely realisable value.

Income from investments

UK Equities,UK fixed interest and other Short-term deposit and bank interest

www.muscular-dystrophy.org

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8. Investment in subsidiary undertakings The accounts of the Muscular Dystrophy Campaign (i.e. ‘company only’ accounts) incorporate the results of the following entity on a line by line basis: • Joseph Patrick Trust; a separately registered charity which makes grants towards welfare equipment. The Muscular Dystrophy Campaign is the sole corporate trustee. The Trust shares a registered office with the Muscular Dystrophy Campaign.

The consolidated accounts of the Muscular Dystrophy Campaign incorporate the results of the following entities on a line by line basis: • Muscular Dystrophy Group (Trading) Limited which undertakes trading activities on behalf of the charity and covenants all profits to the charity.

• NeuroMuscular Centre (NMC) (a charitable company limited by guarantee) which offers care and support to those with muscular dystrophy and related neuromuscular conditions.

• NMC Trading Ltd (a subsidiary of the NeuroMuscular Centre) which undertakes trading in support of its immediate parent.

Their net assets and results for the year ended 31 March 2011 are summarised below: Muscular Dystrophy Group (Trading) Ltd £000

Joseph Patrick Trust

NeuroMuscular Centre

NMC Trading Ltd

£000

£000

£000

Fixed assets Current assets Current liabilities

38 (178)

308 145 (160)

132 148 (213)

7 59 (53)

Total net assets

(140)

293

67

13

(140)

293

67

13

(15)

15

1

-

Represented by: Total funds Surplus/(deficit) for the year

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people are at the heart of everything we do

9. Debtors Amount due from subsidiary undertakings Prepayments and accrued income Other debtors

Group 2011 £000

Group 2010 £000

Company 2011 £000

Company 2010 £000

421 25

212 188

353 319 15

408 205 16

446

400

687

629

All amounts are due within one year, and all intra group balances are unsecured and do not bear interest.

10. Creditors falling due within one year Bank overdraft Grants Accruals and deferred income Other creditors

Group 2011 £000

Group 2010 £000

Company 2011 £000

Company 2010 £000

142 1,876 777 139

2,901 117 488

142 1,876 685 173

2,912 97 438

2,934

3,506

2,876

3,447

The bank overdraft is secured on a charge on a proportion of the investment portfolio.

At balance sheet date the value of the assets charged was £170k.

www.muscular-dystrophy.org

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11. Funds (a) Statement of funds (Group) Movements Balance at 01 Apr £000

Incoming

Outgoing

Transfers

£000

£000

£000

Balance at 31 Mar £000

305

2

(2)

-

305

270 38 59

33 22 28 1,673 323

(1) (47) (1,551) (382)

(12) -

302 1 28 122 -

940 140

323

(110) (463)

(60) -

770 -

Education

-

13

(13)

-

-

Communication

-

2

(2)

-

-

1,752

2,419

(2,571)

(72)

1,528

Unrestricted funds Designated funds NeuroMuscular Centre Tangible assets for charity use

11 139

56

(49)

12 -

79 90

Total designated funds

150

56

(49)

12

169

General Fund

862

4,861

(5,318)

60

465

Total unrestricted funds

1,012

4.917

(5,367)

72

634

Total funds

2,764

7,336

7,938

-

2,162

Restricted funds Orchid Ball Endowment Fund Provision of care Joseph Patrick Trust NeuroMuscular Centre NMC NeuroMuscular Centre – West Midlands Tesco Charity of the Year Other care Research The Patrick Research Trust Other

Total restricted funds

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people are at the heart of everything we do

Restricted Funds • The Joseph Patrick Trust is a subsidiary undertaking of the Muscular Dystrophy Campaign as explained in Note 7. Its assets are restricted to ‘provide welfare, relief and support to people affected by neuromuscular conditions’.

• The Orchid Ball Fund is an endowed fund the income from which (shown separately) is restricted in the first instance to welfare in Scotland. Any unused income in a financial period is then directed to funding research.

• The NeuroMuscular Centre represents funds held by the subsidiary undertaking that were donated for a specific purpose and which have not yet been charged to expenditure.

• The Trustees of the Patrick Trust previously converted a loan to the Muscular Dystrophy Campaign into a fund to be applied towards research for a cure for Duchenne muscular dystrophy. During the year £170,045 was awarded over a two year period to Dame Professor Kay Davies at Oxford for the Patrick Research Fellowship. The balance of the fund is held on special deposit and the interest received is applied to the fund.

• In February 2009, The Tesco Group adopted Muscular Dystrophy Campaign as its nominated Charity of the Year with effect from March 2009. The funds raised in 2009-10 will be used for funding specialist equipment for children with muscular dystrophy.

• Other funds represent other restricted funds.

Unrestricted funds The Muscular Dystrophy Campaign’s reserves policy is reviewed regularly to ensure that the charity has sufficient cash and other reserves to meet its present and future commitments in an orderly and sustainable manner.

The designation of balances is as follows: • NeuroMuscular Centre reflects the unrestricted funds of the Centre.

• ‘Tangible assets for charity use’ represents the amount of unrestricted funds represented by these assets.

• The General Fund is available for the ongoing operations of the charity.

www.muscular-dystrophy.org

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11. Funds - continued (b) Represented by: Fixed assets

Restricted funds Orchid Ball Endowment Fund Joseph Patrick Trust NeuroMuscular Centre NMC NeuroMuscular Centre – West Midlands Tesco Charity of the Year The Patrick Research Trust

£000

Net current assets (liabilities) £000

£000

-

305 302 1 28 122 770

305 302 1 28 122 770

1,528

1,528

Total restricted funds

Total

Unrestricted funds Designated funds NeuroMuscular Centre Tangible assets for charity use

139 90

(60) -

79 90

Total designated funds

229

(60)

169

-

465

465

Total unrestricted funds

229

405

634

Total funds

229

1,933

2,162

General Fund

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people are at the heart of everything we do

12. Legacies The Group is entitled to a share in a number of estates and these it monitors closely. The following sums have not been reflected in these financial statements in accordance with the accounting policies set out in note 1. The potential values of these estates to the Group at the balance sheet date are as follows:

Residuary Reversionary

2011

2010

£000

£000

419 1,473

775 1,386

1,892

2,161

All sums are due to the Muscular Dystrophy Campaign.

13. Status of charity The Muscular Dystrophy Group of Great Britain and Northern Ireland, operating as Muscular Dystrophy Campaign, is a registered charity and a company limited by guarantee. In the event of a winding up members are required to contribute an amount not exceeding one pound. By virtue of Section 30 of the Companies Act 2006 the charity does not use ‘limited’ in its name.

www.muscular-dystrophy.org

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Muscular Dystrophy Campaign is an operating name of the “Muscular Dystrophy Group of Great Britain and Northern Ireland” (a company limited by guarantee: 705357) Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

The Board of Trustees also act as Directors of the Company for the purposes of Company Law.

Patron HRH The Prince Philip, Duke of Edinburgh KG KT OM GBE AC QSO PC

Senior management team N Bungay (Appointed Director of Campaigns and Care 10/01/2011) P Butcher (Chief Executive) (Resigned 10/06/10) R Day (Interim Director of Fundraising) (Appointed 02/08/2010; Resigned 31/03/2011) J Hanaway (Director of Fundraising) (Appointed 14/03/2011) L Inman (Director of Care and Support) (Appointed Director of Education and Training 10/01/2011) F Jackson (Appointed Director of Marketing and Communications 10/01/2011) H Khan (Director of Finance) (Resigned 06/05/2011) M Lanham (Director NMC) R Meadowcroft (Acting Chief Executive) (Appointed Chief Executive 12/10/2010) Dr M Pohlschmidt (Director of Research) J Spencer-Gregson (Appointed Interim Director of Finance 17/05/2011)

President Sue Barker MBE Honorary Life Presidents Lord Attenborough of Richmond-uponThames Kt CBE Lord Walton of Detchant Kt TD MA MD DSc FRCP FMedSci Vice Presidents Anil Ahir Peter Andrews (Honorary) Sophia Bergqvist Jane Byam Shaw Tony Carey Tom Chamberlayne-Macdonald Jeremy Champion Roger Cooke Ian Corner Candida Crewe Charity Crewe Sebastian Crewe Mark Disney Professor Alan Emery FRCP Edin Sir Alex Ferguson CBE Andrew Graham - Trustee Christian Hore Tania Hore Christine Jenkins Matthew Kelly Sarah Kelly Simon Knights Nicky Manby Andrew Martin page 59

Sir Bert Massie CBE Martin Moore Alan Noble Alexander Patrick DL Valerie Patrick Jeremy Pelczer Jemima Reynolds - Trustee Jonathan Staniforth Michael Thirkettle Baroness Celia Thomas MBE - Trustee Guy Weston Board of Trustees B Ronald (Chair) (Appointed 18/09/2010) Professor M Bobrow CBE FRS FMedSci (Chair) (Retired 18/09/2010) C K Rushton (Vice Chair) L Ball (Retired 18/09/2010) G Davies M Draeger (Resigned 18/09/2010) P Farrant (Appointed 18/09/2010) P Forwood LVO FCA (Treasurer) (Retired 18/09/2010) Dr P Goodfellow DPhil FRS I T Gordon A Graham (Treasurer) (Appointed 18/09/2010) Professor J Harris BPharm PhD FI Biol MPS Professor R Hughes MD FRCP FMedSci (Appointed 18/09/2010) C Manby N Overall K Parkin (Retired 18/09/2010) J Reynolds (Appointed 18/09/2010) Baroness C Thomas of Winchester (Appointed 18/09/2010) R Warner

Bankers HSBC 6th Floor 165 Fleet Street London EC4A 2DY The Royal Bank of Scotland 40 Islington High Street London N1 8XJ Auditors Crowe Clark Whitehill LLP 10 Salisbury Square London EC4Y 8EH people are at the heart of everything we do

Solicitors Russell-Cooke Solicitors LLP 2 Putney Hill Putney London SW15 6AB A Lutley Solicitors Springfield Rookery Hill Ashtead Surrey KT21 1HY Investment Managers Investec Wealth and Investment Ltd 2 Gresham Street London EC2V 7QN Fyshe Horton Finney Ltd Charles House 148-149 Great Charles Street Birmingham B3 3HT Registered Office 61 Southwark Street London SE1 0HL Standing Committees Finance, General Purposes & Audit Committee A Graham (Chair) (Appointed 04/10/2010) Professor M Bobrow CBE FRS FMed Sci (Retired 18/09/2010) P Forwood LVO FCA (Chair) (Retired 18/09/2010) I T Gordon (Retired 22/09/09) (Appointed 04/10/2010) B D Jackson MBE N Overall J Pritchard B Ronald (Appointed 18/09/2010) C K Rushton www.muscular-dystrophy.org

Appointments and Remuneration Committee B Ronald (Chair) (Appointed 18/09/2010) Professor M Bobrow CBE FRS FMedSci (Chair) (Retired 18/09/2010) I T Gordon C Manby K Parkin (Retired 18/09/2010) C K Rushton Baroness C Thomas of Winchester (Appointed 18/09/2010) Medical Research Committee Dr P Goodfellow DPhil FRS (Chair) Professor T Braun DrMed Dr Professor Dame K Davies CBE DBE FMed Sci FRS Dr J den Dunnen PhD Professor G Dickson BSc PhD Professor J Hewitt PhD Dr D Hilton-Jones MA MD FRCP FRCPE Dr S Sawcer M B ChB PhD Dr S Tajbakhsh PhD Professor F Walsh BSc PhD Services Development Committee Baroness C Thomas of Winchester (Chair) Professor K Bushby P Farrant A Fischer Professor R Hughes Professor D Kelly S Manning (Network Advisor non-voting member) Professor F Muntoni Dr R Quinlivan E Scott (Network Advisor non-voting member) C Young

Scottish Council R Warner (Chair) Dr S Banham (Appointed 21/05/2010) A Couston K Coyle Dr J Ferrie K Kemp (Secretary) S McDonald (Treasurer) Dr K Naismith (Resigned 21/05/2010) Dr R Petty E Stewart E Warner D Wight (Resigned 21/05/2010) J Wight Dr D Wilcox BSc MBChB FRCP (Resigned 21/05/2010) Northern Ireland Council O Monaghan (Chair) F Ashe J Bailie A Foy J Gamble J Graham M Hegarty M Hollywood R Kane G McClintock G McCollum M McCollum A McDonald R McKay A J McKnight B McKnight Joseph Patrick Trust Management Committee A Patrick (Chair) B D Jackson MBE J Pritchard K Rushton

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Patron HRH The Prince Philip, Duke of Edinburgh KG KT OM GBE AC QSO PC

Prince Philip was born Prince of Greece and Denmark in Corfu in 1921. He renounced his foreign Royal title when he became a naturalised British subject in 1947, the same year he married The Queen.

Since Princess Elizabeth became Queen in 1952, Prince Philip has provided an immense amount of support to The Queen in her duties. Through his work with a wide range of charities, The Duke of Edinburgh has played a major national and international role in helping the lives of other people.

Prince Philip became Patron of the Muscular Dystrophy Campaign in 1966.

Honorary Life Presidents Lord Richard Attenborough Kt CBE

Acclaimed actor, director and producer, Lord Richard Attenborough is one of this country’s most distinguished citizens. He was appointed a CBE in 1967, knighted in 1976 and created a life peer in 1993.

page 61

Lord Attenborough first found out about the Muscular Dystrophy Campaign when visiting a local hospital fete in 1962 where he was greatly affected by the plight of the boys living with Duchenne muscular dystrophy.

From that very day he offered his support to the charity, contributing greatly to raising the profile of the charity and generating hundreds of thousands of pounds. He served as President for 30 years, from 1972 to 2002, when he then became an Honorary Life President. Lord Attenborough remains an inspirational supporter of the Muscular Dystrophy Campaign.

Lord John Walton

Kt TD MA MD DSc FRCP FMedSci Lord Walton of Detchant was a founder of the Muscular Dystrophy Campaign (then called the Muscular Dystrophy Group) in 1959.

In medical school, he specialised in neurology and studied muscular dystrophy, and established a new classification system based on genetic information. He was Professor of Neurology and Dean of Medicine at the University of Newcastle.

Lord Walton has held the presidencies of several medical organisations, including the General Medical Council (GMC), the British Medical Association (BMA) and the Royal Society of Medicine. He

was created a life peer in 1989 and has contributed as a cross-bencher to many high-profile debates.

Lord Walton served as Chairman of the Muscular Dystrophy Campaign from 1970 to 1994, when he became an Honorary Life President. He has been a loyal and constant guiding influence on the development of the charity for over 50 years.

President Sue Barker MBE

Originally from Devon, Sue Barker is a television presenter and former professional tennis player.

During her tennis career, she won the women’s singles title at the French Open and reached a career-high singles ranking of World No. 3.

Upon retiring from tennis in 1985, Sue became a sports commentator and joined the BBC to anchor the tennis coverage at Wimbledon in 1993. Since joining the BBC, Sue has become one of its chief sports presenters; she fronts key sporting events including the Olympics and is also the presenter of the popular quiz show, A Question of Sport.

Through a great friendship with Lord Attenborough, Sue Barker was delighted to follow in his footsteps by becoming President of the Muscular Dystrophy Campaign in 2004. people are at the heart of everything we do

Muscular Dystrophy Campaign 61 Southwark Street London SE1 0HL t: 020 7803 4800 e: hello@muscular-dystrophy.org w: www.muscular-dystrophy.org 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