Financial 2019 by Muscular Dystrophy UK

Annual Report and Financial Statements

Year ended 31 March 2019 www.musculardystrophyuk.org Registered Charity No. 205395 and Registered Scottish Charity No. SC039445 A company limited by guarantee: 705357

Report of the Board of Trustees 2018/19

Report of the Board of Trustees

Independent Auditorâ&#x20AC;&#x2122;s Report to the Trustees and Members of the Muscular Dystrophy Group of Great Britain and Northern Ireland

Consolidated Statement of Financial Activities

Balance Sheet (Group and Charity)

Consolidated Cash Flow Statement

Notes to the Financial Statements

29-45

Patron, President, Honorary Life Presidents, Vice Presidents, Board of Trustees and Committees

46-50

Senior management team and advisors

10 With gratitude

3-22 23-25

50 50-52

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

The Board of Trustees of Muscular Dystrophy UK (the operating name of the Muscular Dystrophy Group of Great Britain and Northern Ireland) presents its Annual Report and Financial Statements for the year ended 31 March 2019.

What Muscular Dystrophy UK does – core purpose and activities Our vision A world with effective treatments and cures for all muscle-wasting conditions and no limits in life for individuals and families affected.

Our mission We are the UK charity for individuals and families living with muscle-wasting conditions. •

We support research to drive the development of effective treatments and cures.

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We ensure access to specialist NHS care and support.

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e provide services and promote opportunities to enable individuals and their W families to live as independently as possible.

We know we can beat muscle-wasting conditions more quickly if we work together. We are uniting skills, knowledge and resources in the UK and working with others around the world so we can improve the quality of life for those affected, and bring treatments and cures closer to reality.

Our values •

We care: we care about everyone affected by muscle-wasting conditions.

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We are inclusive: we are working to ensure there is support and treatment for everyone living with muscle-wasting conditions in the UK.

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We are collaborative: we work in partnership across the UK, and internationally, to maximise our impact.

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We are focused on results: everything we do is designed to improve the quality of life for individuals and families; we won’t stop until treatments and cures are found for all muscle-wasting conditions.

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We are determined: we have been leading the fight against muscle-wasting conditions for 60 years and are unwavering in our commitment to unite resources and achieve our vision.

Objects of Muscular Dystrophy UK for the Public Benefit The charity is established to promote research into muscle-wasting conditions; to promote the provision of care and treatments to those affected; to assist those who care for individuals affected by such conditions; to promote education and training for affected individuals and to raise the awareness of the public on any matter relating to the charity’s objects.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Public Benefit The charity trustees consider that they have complied with their duty in section 17 of the Charities Act 2011 to have due regard to Public Benefit guidance published by the Charity Commission and that the benefits that the charity provides are not unreasonably restricted.

The work of Muscular Dystrophy UK Muscular Dystrophy UK works to improve the lives of an estimated 70,000 people living with a neuromuscular condition today. We believe this as passionately now as we did when we were established 60 years ago. It drives everything we do. It is this vision that unites us all – from researchers we support to the health professionals that we train; from the people we help through our information and advocacy services to our supporters who inform, guide and campaign with us to make change happen. We: •

fund pioneering research for better treatments that will improve people’s lives today and transform those of future generations

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rive change so that people can access treatments faster and the best NHS care and d support

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nsure that we are here for all people and their families affected by a muscle-wasting e condition whether awaiting a diagnosis, recently diagnosed or living with a condition.

Over the years, the charity has made important contributions in funding research and developing clinical support leading to vital progress such as an early and accurate diagnosis, access to steroid treatments, spinal surgery and respiratory support, which, with improved care, enhances quality of life and life expectancy. With advances in technology, there are now opportunities to achieve a great deal more through identifying and developing promising research, helping to get clinical trials underway and developing a critical mass of scientists and clinicians working together to tackle the challenge of muscle-wasting conditions. Muscle-wasting conditions are a group of rare and very rare conditions. Compared with the more common acute conditions, they do not receive the same priority in research funding or investment in clinical care.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Achievements and performance against objectives for 2018/19 Overview Performance Indicators

Progress during the year

To support research with the goal of effective treatments and cures being identified for all conditions

We have continued our support for highquality research and have committed £1.2m into 10 new research projects as well as funding £1.8m to support UK clinical trial capacity and other activities that underpin research into neuromuscular conditions. We continue to provide information on current research developments and clinical trials through our rebranded MDUK research information line, bringing the total research commitment to over £9.7m.

To ensure access to specialist NHS care from a multidisciplinary team

We successfully secured NHS funding for 11 specialist posts, supported clinical networks and provided training to community healthcare professionals to better equip them at a local level to meet the needs of those with muscle-wasting conditions.

To provide services and promote opportunities to enable each affected individual to live as independent a life as they wish

We responded to over 21,710 requests for information or support and more than doubled the number of people with muscle-wasting conditions we supported through our advocacy service compared with two years ago, securing over £400,000 in services for the people we supported.

Income generation

We exceeded the total income target this year, raising £6,997k. In addition, we received £2m from DfT to expand the availability of Changing Places Toilets across the motorway network in England. We have involved more than 9,000 people in events across the UK, developed a new legacy fundraising campaign and trained key front line staff to put legacy giving at the heart of our strategy.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Improving lives today and transforming those of the future: accelerating research to develop effective treatments and cures Muscular Dystrophy UK works to improve the lives of people living with a neuromuscular condition. High-quality research plays a key role in our ambition, helping us to better understand these conditions and maximise treatment improvements. Building on the work of previous years, we have continued to invest in high-quality research to improve our understanding, accelerating steps to safe and effective treatments. In 2018/19, we committed £1.2m into 10 new research projects through our annual grant round. This brings our total research portfolio to over £9.7m. These projects cover every stage of research, from work in the lab to better understand conditions, to developing new tools for use in clinic. The projects address a number of conditions, including the ultra-rare LMNACMD through a grant that was funded in partnership with the US charity CureCMD. We are now funding over 50 different projects in the UK and internationally. To help us plan how we can best support people living with neuromuscular conditions, we held a number of workshops with patients and families, alongside national and international experts. These workshops helped us identify four key priority areas that form the basis of our research and innovation strategy for the next three years:

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harnessing the power of genetics

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increasing our understanding of the underlying mechanisms

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facilitating drug development

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improving quality of life.

We have continued to invest in our key transformational, strategic commitments. For example, we are working in partnership with the University of Oxford to establish a world-leading centre aimed at bringing new treatments to patients more quickly: the MDUK Oxford Neuromuscular Centre. With an investment of over £1m from Muscular Dystrophy UK, a significant financial commitment from the university, new resources including start-up seed funding for research costs for clinical lecturers, as well as a number of new staff posts, the Centre will carry out translational research and boost capacity for clinical trials. The project manager post began in January 2019 and, in March 2019, we were able to announce the appointment of Professor Laurent Servais as Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre. Muscular Dystrophy UK has been supporting the NorthStar Clinical Network for over a decade and has invested £1.7m in the programme. The programme collects natural history data of boys with Duchenne muscular dystrophy, aiming to help clinicians and researchers understand more about the condition, as well as care and treatments. Collecting data from patients across 23 centres in the UK, it has had measurable

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

impact for boys with the condition, and it is now expanding to include men. Muscular Dystrophy UK is the lead funder of the UK side of the UNITE-DMD project, which is an international collaboration with colleagues in France working on viral production for gene therapy. Once pre-clinical studies are complete, the collaboration will assess the safety of a gene therapy for Duchenne muscular dystrophy in a phase I/II clinical trial. We have committed £1.6m, supported by Action Duchenne. The French Muscular Dystrophy Association (AFM-Téléthon) is funding the French arm of the project.

by neuromuscular researchers in other countries. Our membership of ENMC also allows us to support clinicians and researchers to work together to gain a common understanding of the state of the art.

We have continued to improve clinical trials infrastructure for all neuromuscular conditions by providing financial support for clinical trial co-ordinators who oversee the effective and safe management of trials in a number of centres across the UK. Over the last year, these posts have helped to set up and run 45 different studies, two-thirds of which have been testing interventions or treatments. In addition to supporting clinical trial co-ordinators, we partner with UK and international charities to support patient registries and databases that allow medical specialists and researchers to learn more about a particular condition, track symptoms over time and, ultimately, improve care. They also help scientists speed progress towards a treatment, by making it easier to find participants for clinical trials. Muscular Dystrophy UK is a member of the executive of the European Neuromuscular Centre (ENMC). Our work with ENMC allows us to work closely with other European charities focusing on neuromuscular conditions to share ideas, and to increase our understanding of the challenges faced

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Driving change for access to specialist care and support In 2018/19 we continued to campaign for the drug Spinraza to be available to children and adults with spinal muscular atrophy (SMA). MDUK has worked with families affected by SMA and with other patient groups to continue to push for fair and equal access across the UK. While it is not a cure, it can significantly improve people’s lives. In Scotland, we welcomed the Scottish Government’s introduction of a new approach to the way in which ‘ultra orphan’ medicines for very rare diseases such as SMA are assessed and approved, and that Spinraza was assessed using this pathway. This led to news in February that from April 2019, people in Scotland with SMA types 2 and 3 can now also be treated with Spinraza. Together with families, other patient groups and clinicians, we called on NICE, the drug company Biogen and NHS England to find a deal, so that it could be made available to everyone in the UK who could benefit. In May 2019, NICE announced that Spinraza would be made available in England, to people diagnosed before the age of 18 with SMA types 1, 2 and 3. This is a hugely significant development. We will now focus on ensuring that there is information and support for patients as access is rolled out, and that people in Northern Ireland and Wales are able to receive the treatment too. Our determination remains undiminished: to secure long-term system reform to prevent the heart-breaking and frustrating delays that families experienced around Spinraza. This is a key focus of our strategy. We aim to ensure that people with any type of neuromuscular condition receive the best

possible care and support from the point of diagnosis and throughout their lives. This involves many different professional roles to identify and meet people’s needs. Over the past year, we secured NHS funding for 11 new specialist neuromuscular roles including consultants, nurses and physiotherapists. We have also secured new outreach clinics that make it easier for patients to attend clinics and better access to equipment like cough assist machines. Since 2013, we have helped secure 93 new specialist neuromuscular roles in the NHS. This equates to an investment of £5.8m a year in specialist services – to help people live well with their condition – that would not otherwise be available to them. We continue to support health professionals in their understanding of the impact of muscular dystrophy and related neuromuscular conditions on the everyday lives of people so they can provide the best possible care. This year, we launched four new online courses for nurses and occupational therapists. We also offered a course for teachers so they can better meet the needs of students who have musclewasting conditions. These courses have been taken over 2,000 times. In addition, we have seen a 34 percent increase in the number of physiotherapists completing our online course and a further 150 GPs completing their dedicated online course.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

A muscle-wasting condition can affect every aspect of life. The mental health needs of individuals and families affected by muscle-wasting conditions is an area of particular focus for Muscular Dystrophy UK. Working with the All Party Parliamentary Group on Muscular Dystrophy (one of the four all party and cross party groups that we support across the UK), we launched a major report in the Westminster Parliament on mental health support that will guide our campaigning activity. In our aim to meet the all-round needs of people with muscle-wasting conditions, we began an exciting programme of work to explore how volunteers can support people with muscle-wasting conditions within their communities.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Living well with muscle-wasting conditions: improving quality of life by enabling independent living Being diagnosed with a muscle-wasting condition means adjusting to a new and unexpected reality. We believe that it is vital that people have easy access to the information and support they need throughout their experience of their condition. That is why we provide personal, free, expert information resources and confidential support online, over the phone, in communities and in hospitals. We cover every topic from the latest research, money worries, physical symptoms and emotional well-being. Our helpline team continue to provide practical advice and support and listen to people’s concerns; we answered 1,052 calls, a 26 percent increase on last year’s number. We supported 21,710 people in total. Our advocacy services support people who may be struggling to get the care and services to which they are entitled. We help by providing advice or intervening on their behalf. This year we advocated on behalf of 920 people, an increase of 127 percent on the number we supported in 2016/17. We are also here to ease the money worries that are common to people with muscle-wasting conditions. We help to identify the benefits to which they are entitled but not receiving, and support them with the appeal process when they have been incorrectly assessed. Our grants programme that supports everyday living means so much to people. This year we provided 251 people with practical aids, equipment and assistive technology through the

Joseph Patrick Trust (JPT), our grantgiving arm. We have expanded our range of JPT grants to include ‘smart home’ and environmental controls to cover the cost of technology such as home hubs, smart bulbs, smart plugs, blind controls and thermostats, to support everyday living. During 2018, there were over 56,000 visits to our online care and support areas of our website for practical advice and support and 25,000 downloads of our information. In addition, 3,000 people used our online forum to share experiences, give and receive support. The Research Line answered 415 enquiries from people wanting to find out more about the latest research developments. We know how supporters appreciate the opportunity to engage with leading researchers and we arrange events to facilitate this. In February, supporters who have pledged a gift in their will to Muscular Dystrophy UK were invited to visit a research lab at Royal Holloway University to see first-hand how the charity is investing in research. Our regional network of Muscle Groups continues to grow, providing a forum for people affected by muscle-wasting conditions to share their experiences and discuss local and national issues that are affecting their quality of life or presenting a barrier to them living independently. We held three national conferences, a

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

range of condition-specific information days, as well as two family fun days in Blackpool and Newcastle that attracted over 250 people, over half being families new to the charity. Families tell us how they value the opportunity to take part in accessible activities together as a family. We launched a virtual clinical psychology service supporting parents of children with muscle-wasting conditions. This is a pilot service offering telephone reviews and counselling for parents with a newly diagnosed child or a child going through a change or difficult adjustment. The service is in its early days and has received positive feedback from service users and clinicians referring people into the service. Results will be analysed and used to campaign for improved mental health services nationally and to shape potential future service provision. Getting out and about is important but people with disabilities often need extra equipment and space to allow them to use the toilets safely and comfortably. We continued to lead the Changing Places campaign, a consortium of charities driving change to ensure that more public places provide accessible toilet and changing facilities. There are now 1,263 registered Changing Places toilets across the UK and we secured a significant partnership with the Department for Transport to administer a £2m grant programme to ensure that there is adequate coverage of Changing Places facilities in motorway service stations.

Trailblazers’ Moving Up work experience scheme for young disabled people supported nine placements within Muscular Dystrophy UK and two with other organisations. This means that in total the scheme has supported 36 young disabled people, over 60 percent of whom have gone on to find paid work or education.

Growing and operating as a world-leading organisation The Muscular Dystrophy UK team of dedicated staff continue to work with families, carers, healthcare professionals, researchers, volunteers and our supporters to champion the cause of muscle-wasting conditions and make a real difference to people’s lives. Our strategy ‘making every day count’ now requires a step change in how we organise and manage ourselves so that we can support even more people and increase the resources going into research and care. We will build on our success and continue to have motivated and well-developed teams, who work collaboratively with organisations who share our ambitions; this is at the heart of this step change. Our organisational development plan is centred on transforming our ways of working. To achieve this, we have introduced staff development and training opportunities. We want our staff to be the best they can be, now, and to ensure we have the right platform for long-term sustainability and growth.

Trailblazers increased its campaigns network to 783 young people who work with us to improve access to travel and public transport, and to remove the barriers to living independently and enjoying leisure activities. In 2018/19, the

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Scotland Muscular Dystrophy UK works in each of the four countries of the UK. We are required to provide a report on our activities in Scotland by the Office of the Scottish Charity Regulator. In 2018/19, we supported seven exciting research projects in Scotland at laboratories in St Andrews, Edinburgh and Glasgow. This includes a partnership with the Chief Scientist Office and Action Duchenne to support a clinical research fellow in Glasgow and another partnership with the Medical Research Fellow to support another clinical research fellow in Edinburgh. A big focus for us in Scotland in 2018 was the assessment of the SMA treatment Spinraza by the Scottish Medicines Consortium (SMC). We made a Patient Group submission, supported two parents at the Patient and Clinician Engagement meeting, and represented families at the committee meeting. In May 2018, it was confirmed that the SMC had approved Spinraza for use on the NHS in Scotland by children with symptomatic SMA Type 1. While this was positive news for many families, we continued to work with other SMA charities to push for broader access in Scotland. Since the publication of the 2016 Montgomery Review on access to new medicines, we put pressure on the Scottish Government to improve the appraisal process for new treatments. We hosted a parliamentary reception, and a question and answer discussion in the Scottish Parliament on how to remove the barriers to fast access to treatments. We were joined by people affected by musclewasting conditions from across Scotland, as well as representatives of several

charities who had the opportunity to talk to MSPs to highlight the importance of being able to access emerging treatments as quickly as possible. The following month the Scottish Government announced that a new ‘ultra-orphan’ pathway was going to be introduced to assess and approve medicines and thereby accelerate access to new treatments. We called for Spinraza to be reassessed under the new pathway and, in February 2019, it was confirmed that the drug would become available to patients with SMA Type 2 and 3, as well as those with SMA Type 1, giving hope to families across Scotland. The advocacy service in Scotland continued to grow and develop over the past year and we have now supported 400 individuals with advocacy and support requests. We received 30 applications and awarded £50,000 in grants on assistive technology, aids and adaptations such as wheelchair adaptations, beds and chairs with riser functions through to the latest eye gaze technology. We have continued to work closely with the Scottish Muscle Network, through the clinic support provided by the charity’s Advocacy and Information Officer in Scotland and through collaboration on events and information days. We held our first carers support and information event in Scotland, which generated great interest and was well received. It was organised in line with the implementation of the Carers (Scotland) Act 2016 that came in to effect in April

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

2018. The purpose of this legislation is to ensure better and more consistent support for carers and young carers so that they can continue to care, if they so wish, in better health and to have a life alongside caring. It is important that carers are made aware of their rights and the positive impact it can have if implemented well. The event provided carers and their families with vital information, the opportunity to network, to access peer support and to recognise and address the growing need for emotional and practical support for people who undertake a caring role. A programme of further events will be held next year that will continue to support and benefit carers. Four Muscle Group meetings were held in Glasgow and Edinburgh. Topics included assistive technology, access to sports, accessible housing, Changing Places, how to access local social care services and a focus on software that promotes independence, and reduces anxiety and social isolation. We also piloted an advocacy drop-in session in Glasgow to accommodate the increase in referrals, and we are planning various events in the Highland region, in recognition of the growing need for support in this area. We are piloting an advocacy drop-in in Inverness, which will take place over two days every two months.

February saw great support for Go Orange Day with 32 registrations across Scotland of which 20 came by family fund Leo's Pride alone. Staff of Vision Express in Inverness also took part and the total raised was £6,528. December saw over 800 people attend the two Spirit of Christmas concerts which were led by the children and teachers of Stagecoach Theatre Performing Arts Glasgow. This was the second year of trialling a Stagecoach only themed event and again proved to a great success seeing £4,580 raised net. Scottish Ambassador Gordon Smith joined us on both nights armed with his guitar and singing a John Lennon classic with the children. The 2019 Question of Sport event was the strongest yet with 154 guests in attendance seeing a net total of £9,438 raised. This year also saw the event sponsored for the first time by the Hot Tub Supercentre, who will also be our sponsors next year. Scotland held six collections across the last financial year at train stations and Tesco supermarket stores helping raise £2,982 and bringing together our fantastic volunteers. The Gen Pact Group brought together a team of 19 to take part in the Glasgow Kilt Walk in April and helped raise £6,921, which was topped up by the Tom Hunter Foundation to make an overall final donation of £10,152.

We held a Young Persons’ Conference in Scotland in conjunction with our Scottish Conference, and we continue to grow the Trailblazers network in Scotland.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

In 2019/20 we will: Accelerate research to develop effective treatments and cures Our aim over the next three years is encompassed in our newly published three-year research strategy ‘Transforming lives through research’. To progress this strategy over the next year, we will continue to invest in high-quality research to deepen our understanding of neuromuscular conditions and support more studies into ultra-rare conditions. We will encourage new researchers to join the field and ensure that we support allied healthcare professionals to carry out research. In addition, we will work to expand patient access to clinical trials. We will do this by: •

strengthening and developing national and international partnerships: •

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over the years, we have developed partnerships with major UK funders such as the Medical Research Council, the Chief Scientist Office and recently the National Institute of Health Research (NIHR) to support fellowships. Additionally, we have funding relationships with a number of smaller national and international charities such as Action Duchenne, SMA UK and Cure-CMD. We will maintain these relationships and seek new opportunities to fund new projects with them and other charities.

s trengthening and developing innovative channels to facilitate/enable research in neuromuscular conditions: •

we will review our grant-making and monitoring processes to ensure that they are as streamlined as possible

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we will review our grant schemes and make recommendations for change ahead of the launch of the grant round in the autumn of 2019

supporting excellent researchers •

through our annual grant round, we will invest in high-quality research that addresses our four priority areas: harnessing the power of genetics, understanding disease mechanisms, facilitating treatment development and improving quality of life and well-being

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all applications for funding will undergo rigorous peer review to identify the most promising and relevant research for Muscular Dystrophy UK support

ensuring greater reach of our research communications •

we will continue to expand our research communications to families and supporters to provide up-to-date information and advice on research, clinical trials and the impact of our research investments

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through our individualised service, the ‘MDUK Research Line’ we will continue to ensure that patients and families can find out about new studies and treatments and clinical trials.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Drive change for access to specialist NHS care: we will •

campaign for system change to the drug approval process across the UK to ensure that, in the long term, people with muscle-wasting conditions have access to new treatments as they emerge, while in the meantime influencing within the current system to ensure that any treatments that become available can be accessed

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ngage with health professionals to ensure that they have a better understanding e of muscle-wasting conditions and of their role in providing high-quality care for individuals living with them

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ndertake influencing activity to increase the availability and quality of NHS specialist u support for people living with a muscle-wasting condition

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i mprove the reach and the quality of the support provided by MDUK to individuals and families living with muscle-wasting conditions.

Improving quality of life by enabling independent living: we will •

nsure that individuals and families affected by muscle-wasting conditions have access e to high-quality mental health support

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improve the reach and the quality of the advocacy support provided by MDUK to individuals and families living with muscle-wasting conditions

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i dentify the injustices and barriers to full participation in society experienced by individuals and families affected by a muscle-wasting condition, which are most appropriately addressed by a Muscular Dystrophy UK campaigning response, expanding from the agreed strategic priorities of employment and access to sport leisure and exercise

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provide direct financial support to people living with muscle-wasting conditions to help them meet the costs of equipment and adaptations designed to help them live well

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secure improved access to Changing Places toilet facilities through Muscular Dystrophy UK’s leadership of the Changing Places consortium.

Fundraising: we will •

be a sustainable £7.2m gross income charity in 2019/20

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r eview the fundraising portfolio to ensure we have the right activities for our audiences to engage and support wherever they are in their relationship with Muscular Dystrophy UK, maximising potential and spreading risk

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onitor, evaluate and develop our legacy strategy to be integral to our fundraising m strategy

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maximise the return on investment through effective deployment of our resources

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nsure that fundraising successfully raises awareness of the charity’s work and is e integrated with our charity communications activities.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Financial review The total income for 2018/19 was £8,997k (2018: £7,159k). Income from donations, gifts, grants and fundraising activities totalled £4,714k (2018: £5,127k). In addition, £1,914k was received from legacies (2018: £1,564k). Investment income was £200K (2018: £248k). Other income amounted to £2,169k (2018: £220k), of which £2,000k is a Changing Places grant to be distributed on behalf of the DfT in 2019/20 and £50k from Action Duchenne, which is one of a number of partnerships to fund research. Expenditure on charitable activities was in respect of medical research, access to specialist NHS care and support, and provision of information, support and opportunities to enable independent living. Medical research in the search for effective treatments and eventual cures for muscle-wasting conditions comprised 58 percent of the total expenditure on charitable activities. Access to specialist NHS care and support comprised 24 percent, and provision of information, support and opportunities to enable independent living comprised 18 percent of our charitable activity. The charity had a successful year financially and ended the year with a planned net Surplus of £598k (2018: Deficit £1,191k). This year saw our legacy income returning to £1.9m after several years of exceptional generosity, our investments made a small gain against a background of increasing our level of charitable activity. An unrestricted deficit of (£1,288k) for the year (2018: (£710k)) continues several years’ planned deficits to bring our unrestricted reserves back to the £1.6m target to maintain a sound level of reserves for development of our charitable activity in forthcoming years.

Reserves policy Free reserves available to the charity exclude restricted and endowment funds and the tangible fixed assets held as unrestricted funds. 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 unrestricted commitments should it suffer an immediate or unforeseen drop in income. The recommended free reserves level is calculated annually in advance of the budget process on the basis of the financial impact of the current risks facing the charity. The reserves policy is reviewed annually by the Trustees. The charity seeks to maintain free reserves to manage the risks to which the charity is exposed in the course of its business, including but not limited to safeguarding against volatile voluntary income. The Trustees consider that in order to meet these needs, and to operate effectively, the charity needs reserves of around £1.6million based on the current analysis of risk. The charity’s unrestricted reserves were £2,863k at 31 March 2019 (2018: £4,151k). This is higher than the target level agreed by the Trustees. However, in September 2016, the Trustees approved an investment in three significant new projects over the next five years. These included a new centre for Translational Neuromuscular Science £1.1m; NorthStar database development £1m and a gene therapy clinical trial £1.6m. A designated fund to part-fund these new projects has been set up. This is alongside a Clinical Trial designation to ensure that clinical trial capacity is maintained. Once these investments are completed it is anticipated that reserve levels will return to the reserves policy level.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Fundraising statement Our supporters are key to our advancements in the fight to beat muscle-wasting conditions, and we recognise how important it is to manage their data with care and integrity. Our statement of fundraising best practice, which underlies Muscular Dystrophy UK’s commitment to the following personal information practices, is: •

to deliver best practice rather than compliance

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to never sell or swap donor data

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to never rank donors based on wealth

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ot to share data with external agencies for the purposes of wealth screening or n finding data you haven’t provided before

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to enable our audiences to choose what communications they receive and how.

These are actions that enable us to protect vulnerable people and all other members of the public from any behaviour that could be deemed: •

an unreasonable intrusion on a person’s privacy

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unreasonably persistent

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placing undue pressure on a person to give.

We know we can beat muscle-wasting conditions more quickly and reach more people with these conditions by working together. We offer many different opportunities for our fundraisers and donors to engage with us to fulfil our charitable objectives. These include: special and challenge events; corporate partnerships; trusts and foundations; regional and community fundraising activity including Family Funds, branches and events; individual giving, which includes major gifts, mailing campaigns, raffles, membership scheme, telephone campaign, Christmas cards and online shop sales; legacy and in-memory programmes. We conduct our Payroll giving, our lottery programme, legacy administration, legacy campaign, the shop fulfilment, printer and mailing houses for external mailings and the majority of our regional and national challenge events through commercial participation agreements. We carry out internal analysis to ensure the work delivered by the agencies provides best value to the charity, its supporters and users. We are paid-up members of the Fundraising Regulator (formally Fundraising Standards Board) and subscribe to the fundraising codes of practice. We hold a number of memberships for the Institute of Fundraising to remain up-to-date in all areas of fundraising governance and training. We also attend training events with other reputable companies and institutions. The number of complaints received in 2018/19 was a total of 12, which derived from the following: 0 from 51,292 mailings about our raffles and weekly lottery to both warm and cold supporters; 4 from 9,044 participants and guests at our own fundraising events; 1 from 597 volunteer fundraising events; 5 from 36,281 people via our warm and cold telemarketing campaigns; 2 from 55,442 pieces of direct mail sent out.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

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, the 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 or structured products.

Remuneration policy Salaries of the Chief Executive and the Senior Leaderhip Team are set by the Board’s Appointments and Remuneration Committee, taking into account the performance of the charity overall, external comparisons and the needs of the charity in the longer term. The Board’s Appointments and Remunerations Committee reviews the performance of the CEO and the Senior Leaderhip Team annually. The charity pays above the London Living Wage for all posts. We advertise vacant posts on our website and seek applicants from both our current staff and externally. No member of the Senior Leaderhip Team has a car supplied by the charity and all staff members (and Trustees) travel on standard fares on charity business. None of the Trustees is paid any remuneration or receives any other benefits from their work for the charity. Details of reimbursed expenses to Trustees can be found in Note 17.

Ethical considerations It has been decided not to invest directly in tobacco manufacture and distribution, this is defined as companies with more than 20 percent of their turnover in this activity. 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 that 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 or retained.

Risk management The Trustees continue to support formal risk management procedures, to assess business risks and implement strategies to minimise risk. Risks have been identified and classified in terms of their potential impact and likelihood, as well as the processes in place to manage risks. The comprehensive risk management strategy is based upon a detailed risk register, which is subject to regular scrutiny and review. Risks are reviewed against the strategic aims of the charity and are evaluated against controls in place. Action plans, to minimise or remove risk where possible, are in place and kept under review.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

The following risks have been identified as the most significant for the charity’s financial sustainability: a. maintaining income levels is essential to the charity’s financial sustainability – the charity continues to monitor the risks associated with its diverse voluntary income streams using close budget control, clear marketing plans and regular review b. needing to hold a sufficient level of unrestricted funds to provide a buffer against loss of income or unplanned expenditure – the charity keeps these funds under quarterly review c. the impact of a stock market crash on the value of the investment portfolio, mitigated by taking the advice of professional investment managers d. data protection: given GDPR, recent fines and attacks on data, this has become a very real risk to the charity during the past year; leading experts in the field have been advising us and we continue to work proactively to address this issue e. providing information that meets the needs of our users is essential for their continued support of the charity – the charity is reviewing all communications, publications and the website to ensure they meet the needs of all our audiences.

Grant-making policies Muscular Dystrophy UK makes grants for research. We carry out grant calls to attract grant applications. These are peer-reviewed, and then recommended to the Trustees by the Medical Research Committee. Once a grant is approved, it is monitored annually to ensure that objectives are being met. Muscular Dystrophy UK also makes grants for equipment. The Joseph Patrick Trust (JPT) committee considers the applications against approved criteria before approving the grants.

Going concern Having reviewed the strategic risks facing the charity and the five-year financial projections, the Board of Trustees considers that there are sufficient reserves held at 31 March 2019 to manage those risks effectively. The Trustees consider that there is a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. Accordingly, they continue to adopt the ‘going concern’ basis in preparing the Annual Report and Accounts.

Reference and administrative details Muscular Dystrophy UK is a charitable company limited by guarantee. It is registered as a charity (Number 205395) in England and Wales and (Number SCO39445) in Scotland. The details of the Patron, the President, Honorary Life Presidents, Vice Presidents, Committees, senior management team and advisors are set out on pages 46 to 50.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Structure, governance and management Governing document The Muscular Dystrophy Group of Great Britain and Northern Ireland, operating as Muscular Dystrophy UK, 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. Muscular Dystrophy UK 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. Muscular Dystrophy UK has a wholly owned trading subsidiary, Muscular Dystrophy Group (Trading) Ltd.

Appointment of Trustees Muscular Dystrophy UK has between seven and 17 elected 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 Muscular Dystrophy UK’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 Muscular Dystrophy UK. The Board meets quarterly and there are standing committees covering key areas of activity: research (Medical Research Committee, MRC), care (Services Development Committee, SDC), finance (Finance Committee), fundraising (Appeals Board) and appointments (Appointments and Remuneration Committee). A Chief Executive, with delegated authority, is appointed by and is accountable to the Trustees for managing the day-to-day operations of Muscular Dystrophy UK and the delivery of operational plans.

Members Muscular Dystrophy UK has a body of around 200 Members who carefully monitor the charity’s progress. They are volunteers drawn from the various stakeholder groups that the charity represents: individuals, family members, scientists, doctors, MPs, Lords and others. Trustees are Members. If you are keen on following the charity’s work and would be interested in becoming a Member, please contact the charity.

Volunteers Volunteers are central to the work of Muscular Dystrophy UK. We rely on voluntary help in all aspects of the work of the charity. Volunteers work in the office, get involved in fundraising, provide their advice and guidance on many committees, provide support to individuals and families with muscle-wasting conditions, and get involved with campaigning and media

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

work. All these efforts help the charity achieve its aims and objectives and we would wish to thank them all for their hard work and support.

Charity Governance Code This code is a practical tool to help charities and their trustees develop high standards of governance. In 2018/19 the Board reviewed the code and began to work together on how these principles and practices should be applied at Muscular Dystrophy UK.

Related parties The Joseph Patrick Trust (JPT), an unincorporated charity, (registered charity number 294475), is the welfare arm of Muscular Dystrophy UK, which is its sole corporate Trustee. Constituted on 30 April 1986, it provides direct financial assistance in the form of welfare grants to individuals and families living with muscle-wasting conditions, throughout the UK. The JPT receives most of its income from Muscular Dystrophy UK and from its own investments. The consolidated financial statements also include the Trading subsidiary, Muscular Dystrophy Group (Trading) Limited of the Muscular Dystrophy Group of Great Britain and Northern Ireland. Muscular Dystrophy UK maintains extremely close working relationships with partner charities that assist those living with muscle-wasting conditions.

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. The Board thanks Robert Meadowcroft for his 8 years as Chief Executive of Muscular Dystrophy UK. The new Chief Executive, Catherine Woodhead will continue to lead the charity to deliver the 5 year financial plan to expend any additional unrestricted reserves over the period of this forecast; to ensure that at the end of the strategic projects in 2021/22 the charity ends with a break-even unrestricted budget and the minimum level of unrestricted funds needed to ensure stability in the face of operational risks. This has been assessed as £1.6m by the Board.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

STATEMENT OF TRUSTEES’ RESPONSIBILITIES The Trustees, who are also directors of the charitable company, are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and regulations. Company law requires the directors to prepare financial statements for each financial year. Under company law, the directors have elected to prepare the financial statements in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). Under company law, the directors 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 company and the group and the profit or loss of the group for that period. In preparing these financial statements, the directors are required to: •

select suitable accounting policies and then apply them consistently

•

observe the methods and principles in the Charities SORP

•

make judgments and accounting estimates that are reasonable and prudent

•

state whether applicable UK 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 charitable company will continue in operation.

The directors are responsible for keeping adequate 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 charity and group enabling them to ensure that the financial statements comply with the Companies Act 2011. They are also responsible for safeguarding the assets of the company and group and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Provision of information to auditors So far as each of the directors is aware at the time the report is approved: •

there is no relevant audit information of which the company’s auditors are unaware; and

•

the directors have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.

Appointment of auditors The auditors, Haysmacintyre LLP, will be proposed for reappointment at the next Annual General Meeting. This report, incorporating the Strategic Report, is approved by the Board and signed on its behalf by:

Professor M Hanna Chairman 9 July 2019

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

INDEPENDENT AUDITOR’S REPORT TO THE TRUSTEES AND MEMBERS OF MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELAND Opinion We have audited the financial statements of Muscular Dystrophy Group of Great Britain and Northern Ireland for the year ended 31 March 2019 which comprise the Consolidated Statement of Financial Activities, the Group and Charitable Company’s Balance Sheets, Consolidated Cash Flow Statements and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice). In our opinion, the financial statements: •

give a true and fair view of the state of the group’s and of the parent charitable company’s affairs as at 31 March 2019 and of the group’s and parent charitable company’s net movement in funds, including the income and expenditure, for the year then ended;

•

ave been properly prepared in accordance with United Kingdom Generally Accepted h Accounting Practice; and

•

ave been prepared in accordance with the requirements of the Companies Act 2006 h and the Charities and Trustee Investment (Scotland) Act 2005 and regulation 8 of the Charities Accounts (Scotland) Regulations 2006.

Basis for opinion We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the group in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Responsibilities of trustees for the financial statements As explained more fully in the trustees’ responsibilities statement p22, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

In preparing the financial statements, the trustees are responsible for assessing the group’s and the parent charitable company’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the group or the parent charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements. A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Conclusions relating to going concern We have nothing to report in respect of the following matters in relation to which the ISAs (UK) require us to report to you where: •

the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is not appropriate; or

•

t he trustees have not disclosed in the financial statements any identified material uncertainties that may cast significant doubt about the group’s or the parent charitable company’s ability to continue to adopt the going concern basis of accounting for a period of at least twelve months from the date when the financial statements are authorised for issue.

Other information The trustees are responsible for the other information. The other information comprises the information included in the Trustees’ Annual Report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Opinions on other matters prescribed by the Companies Act 2006 In our opinion, based on the work undertaken in the course of the audit: •

the information given in the Trustees’ Annual Report (which includes the strategic report and the directors’ report prepared for the purposes of company law) for the financial year for which the financial statements are prepared is consistent with the financial statements; and

•

t he strategic report and the directors’ report included within the Trustees’ Annual Report have been prepared in accordance with applicable legal requirements.

Matters on which we are required to report by exception In the light of the knowledge and understanding of the group and the parent charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees’ Annual Report (which incorporates the strategic report and the directors’ report). We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and the Charity Accounts (Scotland) Regulations (as amended) require us to report to you if, in our opinion: •

adequate accounting records have not been kept by the parent charitable company, or returns adequate for our audit have not been received from branches not visited by us; or

•

t he 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.

Use of our report This report is made solely to the charitable company's members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006, section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and regulation 10 of the Charities Accounts (Scotland) Regulations 2006. 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 charitable company's members as a body, for our audit work, for this report, or for the opinions we have formed.

Anna Bennett (Senior Statutory Auditor) 10 Queen Street Place For and on behalf of Haysmacintyre LLP, Statutory Auditors London 9 July 2019 EC4R 1AG

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR CONSOLIDATED ENDED 31 MARCH 2019 STATEMENT OF FINANCIAL ACTIVITIES Notes Unrestricted

Restricted and Endowment Funds

Total 2019

Unrestricted Funds

Restricted and Endowment Funds

Total 2018

£000

3,165 1,861

1,452 53

4,617 1,914

2,993 1,540

2,046 24

5,039 1,564

187

200

234

248

72 5,382

2,097 3,615

2,169 8,997

128 4,983

92 2,176

220 7,159

2,311

2,147

69 2,380

85 2,232

3, 5 3 3

2,258 1,253 906 4,417

1,280 243 217 1,740

3,538 1,496 1,123 6,157

1,581 1,074 634 3,289

2,194 110 472 2,776

3,775 1,184 1,106 6,065

6,797

1,875

8,537

5,521

2,776

8,297

127 --

11 -

138 -

(44) (128)

(9) 128

(53) -

(1,288)

1,886

598

(710)

(481)

(1,191)

4,151 2,863

2,914 4,800

7,065 7,663

4,861 4,151

3,395 2,914

8,256 7,065

Funds £000

Income Income from charitable activities Donations, gifts and grants Legacies

2 2

Income from other trading activities Investment income Other Income Total Income Expenditure – raising funds Expenditure on raising funds Costs from other Trading Activities Total – raising funds Expenditure – charitable activities Medical research Access to specialist care and support Independent living Total – charitable activities

2, 10

Total Expenditure Net Gain / (Loss) on Investment Assets Transfer between Funds

Net Movement in Funds Reconciliation of Funds Total Funds Brought Forward Total Funds Carried Forward

15 15

(INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR There no recognised gains31 or losses other than those disclosed above. All results are THEareYEAR ENDED MARCH 2019 derived from continuing activities. The accompanying notes on pages 29 to 45 form an integral part of the financial statements.

There are no recognised gains or losses other than those disclosed above. All results are derived from continuing activities. The accompanying notes on pages 27 to 40 form an integral part of the financial statements. Muscular Dystrophy UKGreat Annual Report Financial Statements for the year ended 31 March 2019 26 Muscular Dystrophy Group of Britain and and Northern Ireland

BALANCE SHEETS AS AT 31 MARCH 2019 BALANCE SHEETS AS AT 31 MARCH COMPANY REGISTRATION NUMBER2019 705357 COMPANY REGISTRATION NUMBER 705357 Note

£000

Charity Restated 2018 £000

210 5,207 5,417

183 4,961 5,144

210 4,856 5,066

12 734 8,454 9,200

13 651 6,538 7,202

1,152 7,929 9,081

1,207 5,951 7,158

(7,041)

(5,554)

(6,580)

(5,272)

Net Current Assets

2,159

1,648

2,501

1,886

Total Assets less current liabilities

7,663

7,065

7,645

6,952

Net Assets

7,663

7,065

7,645

6,952

1,706 1,157 2,863 4,413 387 7,663

2,596 1,555 4,151 2,527 387 7,065

1,706 1,187 2,893 4,365 387 7,645

2,596 1,606 4,202 2,363 387 6,952

Fixed Assets Tangible Assets Investments Total Fixed Assets Current Assets Stock Debtors Cash at Bank Total Current Assets Creditors falling due within one year

The funds of the Charity Unrestricted - Designated - General Restricted Endowment Total Charity Funds

Group

2019 £000

2018 £000

8 9

183 5,321 5,504

12 13

15 15 15 15

Charity 2019

The statement of Financial Activities for the year ended 31 March 2019 for the parent charitable The statement Financial Activities for the year endedof31 March 2019 for the parent charitable company only was a sur company onlyofwas a surplus of £693k (2018: Deficit (£821k)). of £693k (2018: Deficit of (£821k)).

Theaccompanying accompanyingnotes notesform on pages 29 to 45 form an integral of the financial statements. The an integral part of the financialpart statements. Approved on99July July2019 2019and andsigned signedononitsits behalf Approvedand andauthorised authorisedfor forissue issueby bythe theBoard Board of of Trustees Trustees on behalf by:by:

Hanna M Brown MMHanna M Brown

Chairman Treasurer Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Chairman

Treasurer

STATEMENT OF GROUP CASHFLOWS – STATEMENT OF GROUP CASHFLOWS – AS AT 31 MARCH 2019 AS AT 31 MARCH 2019 Net Cash inflow/(outflow) from operating activities (note a) Net Cash flow from investing activities Dividends from investments Purchase of Tangible Fixed Assets Proceeds of sale of Investments Purchase of Investment Net Cash provided by investing activities Increase in Cash and Cash equivalents in the year

2019 £000 1,731

2018 £000 (73)

200 (39) 1,533 (1,509) 185

248 (68) 1,697 (783) 1,094

1,916

1,021

1,916 6,538 8,454

1,021 5,517 6,538

Reconciliation of net cash inflow to movement in net funds Increase in Cash and Cash equivalents in the year Cash and cash equivalents at the beginning of the year Cash and cash equivalents at the end of the year

Notes to cash flow statement (a) Reconciliation of net movement in funds to net cash flow from operating activities: 2019 £000 Net movement in funds 598 (200) Dividends from investments (138) Investment (gains) / losses 66 Depreciation (82) (Increase) in Debtors / Stock 1,487 Increase in All Creditors 1,731 Net Cash provided/(used in) by Operating Activities

2018 £000 (1,191) (248) 53 67 (147) 1,393 (73)

The accompanying notes form an integral part of the financial statements.

The accompanying notes on pages 29 to 45 form an integral part of the financial statements.

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 1. ACCOUNTING POLICIES ACCOUNTING CONVENTION The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) – (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and Companies Act 2006. The financial statements have been prepared under the historical cost convention unless otherwise stated in the relevant accounting policy note(s). Muscular Dystrophy UK meets the definition of a public benefit entity under FRS102. 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 Group of Great Britain and Northern Ireland itself is the sole corporate Trustee) and non-autonomous branches are treated as part of the parent charity and are referred to as ‘charity’ financial statements. A separate Statement of Financial Activities (SOFA) for the parent charity is not presented because Muscular Dystrophy UK has taken advantage of the exemption afforded by section 408 of Companies Act 2006. Consolidation has been done on a line-by-line basis, with all inter-company transactions eliminated. The accounting dates and policies are the same. INCOME Income is 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 Muscular Dystrophy UK has control over the rights to the resource, enabling it to receive the economic benefit

•

probability – when it is probable, more likely than not that the economic benefit will be received

•

measurement – when the monetary 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.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 INCOME (cont) It is released as income in the accounting period in which Muscular Dystrophy UK is allowed to expend the resource. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably through estate accounts or cash receipt and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is not recognised in the accounts. EXPENDITURE All expenditure is recognised on an accruals basis and includes irrecoverable VAT where appropriate. Grants awarded are recognised as a liability when Muscular Dystrophy UK is under a legal or constructive obligation to a third party. Expenditure of raising funds includes all expenditure incurred in pursuance of Muscular Dystrophy UK’s fundraising activities. Charitable expenditure includes all expenditure incurred in pursuance of Muscular Dystrophy UK’s objectives. The costs of these activities are divided between grants and other direct costs. Support costs have been allocated to each activity on the basis of expenditure incurred. Governance costs have been allocated in line with cost of administration and include those costs associated with meeting the constitutional and statutory requirements of the charity and include audit fees and costs linked to the strategic management of the charity. Muscular Dystrophy UK awards three types of grant: •

grants to fund medical research

•

grants for clinical research

•

grants to specific beneficiaries to enable them to purchase equipment to alleviate their muscle-wasting condition, and other small welfare grants dispensed by Branches to individual beneficiaries.

TAXATION Muscular Dystrophy Group of Great Britain and Northern Ireland and the Joseph Patrick Trust are registered charities with the meaning of para 1 schedule 6 Finance Act 2010. Accordingly, they are exempt from taxation in respect of income or capital gains within categories covered by Chapter 3 of Part 11 of the Corporation Tax Act 2010 or section 256 of the

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 TAXATION (cont) Taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively to charitable purposes. No tax charge arose in the period. Muscular Dystrophy Group (Trading) Limited donates by way of Gift Aid all taxable profits to the parent charity. LISTED INVESTMENTS Listed investments are shown at the bid-market value ruling at the date of the Balance Sheet and after taking into account any subsequent impairment in value. Muscular Dystrophy UK has full discretion in its investment policy. UNLISTED INVESTMENTS Unlisted investments are shown at cost unless there is reason to believe that there has been a significant reduction in their value. FINANCIAL INSTRUMENTS Basic financial instruments are initially recognised at transaction value and subsequently measured at amortised cost with the exception of investments which are held at fair value. Financial assets held at amortised cost comprise cash at bank and in hand, together with trade and other debtors. A specific provision is made for debts for which recoverability is in doubt. Cash at bank and in hand is defined as all cash held in instant access bank accounts and used as working capital. Financial liabilities held at amortised cost comprise all creditors except social security and other taxes. TANGIBLE FIXED ASSETS AND DEPRECIATION Items or projects with a value exceeding ÂŁ500, and which have a life exceeding one year, are likely to be capitalised. 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 Motor Vehicles: over three years All other assets: over four years. OPERATING LEASES The charity provides for operating leases on property on an actual cost basis. Rent-free periods on property are apportioned over the life of the lease, or to the first break clause if earlier. Any rent-free period 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.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 DEBTORS Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due. CASH AT BANK AND IN HAND Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account or matures within three months of the date of the balance sheet. CREDITORS AND PROVISIONS Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due. EMPLOYEE BENEFITS Short term benefits including holiday pay are recognised as an expense in the period in which the service is received. Employee termination benefits are accounted for on an accrual basis and in line with FRS 102. PENSIONS Muscular Dystrophy UK offers defined contributions to employeesâ&#x20AC;&#x2122;pension arrangements. This is to an employeeâ&#x20AC;&#x2122;s portable scheme. The amount charged to the SOFA in respect of pensions costs is the contributions payable within the year. Differences between contributions payable and contributions actually paid are shown as accruals in the Balance Sheet. CRITICAL ESTIMATES AND AREAS OF SIGNIFICANT JUDGMENT There are no areas of critical estimate or significant judgment, except legacy recognition as referred to in Income above. STOCK Stock is included at the lower of cost or net realisable value. Donated items of stock are recognised at fair value, which is the amount the charity would have been willing to pay for the items on the open market.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

CRITICAL ESTIMATES AND AREAS OF SIGNIFICANT JUDGMENT There are no areas of critical estimate or significant judgment, except legacy recognition as referred to in Income above. STOCK Stock is included at the lower of cost or net realisable value. Donated items of stock are recognised at fair value, which is the amount the charity would have been willing to FUND ACCOUNTING POLICIES pay for the items on the open market. Unrestricted funds are funds received and applied to achieve the general objectives of the MDUK. FUND ACCOUNTING POLICIES Unrestricted funds are funds received and applied to achieve the general objectives of the MDUK. Designated funds are unrestricted funds earmarked by the Trustees for particular purposes. Designated funds are unrestricted funds earmarked by the Trustees for particular purposes.

Endowment funds are represented capital held as investments which generate income w Endowment funds are represented by capital by assets heldassets as investments which generate turn in is turn applied to specific objectives of theofMDUK as laid down by by thethe donor. incomein which is applied to specific objectives the MDUK as laid down donor.

Restricted funds are to be used for specified purposes as laid down by the donor. Expenditure whic meets these criteria is for identified to purposes the fund, as together withbyathe fairdonor. allocation of management and sup Restricted funds are to be used specified laid down costs.which meets these criteria is identified to the fund, together with a fair Expenditure allocation of management and support costs.

INCOME 2. INCOME

Events and promotions Direct marketing Corporate Trusts Regional development Legacy Other income Total income

2019 £000

2018 £000

1,539 755 533 475 1,412 1,914 2,369 8,997

1,540 726 418 715 1,720 1,564 476 7,159

Of this income £2,000K comes from Government Grants (2017/18 £nil).

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 ENDED 31 MARCH 2019 2019 3. 3. EXPENDITURE EXPENDITURE

Direct Costs Grants Other £000

£000

Support Costs £000

2,129 69 2,198

182 182

2,311 69 2,380

331 331

1,283 633 1,916

213 159 372

1,496 1,123 2,619

Pursuit of Knowledge Medical research

2,579

456

503

3,538

Total Charitable Expenditure

2,910

2,372

875

6,157

Total Expenditure

2,910

4,570

1,057

8,537 2018

Raising Funds Expenditure on raising funds Costs from other Trading Activities Total Charitable Expenditure Access to care and independent living Access to care Independent living Total

Direct Costs Grants Other

2019 £000

£000

Support Costs £000

1,995 85 2,080

152 152

2,147 85 2,232

301 301

1,033 664 1,697

151 141 292

1,184 1,106 2,290

Pursuit of Knowledge Medical research

2,861

432

482

3,775

Total Charitable Expenditure

3,162

2,129

774

6,065

Total Expenditure

3,162

4,209

926

8,297

Raising Funds Expenditure on raising funds Costs from other Trading Activities Total Charitable Expenditure Access to care and independent living Access to care Independent living Total

£000

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

 

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR 2019 ENDED 2019the relevant activity. ‘Direct Costs’ include all 31 costsMARCH incurred in delivering ‘Support Costs’ comprise of the following : ‘Direct Costs’ include all costs incurred in delivering the relevant activity. ‘Support Costs’ comprise of the following : Chief Executive and Human Resources Finance and insurance Chief Executive and Human Resources Office costs Finance and insurance Information Technology Office costs Governance Information Technology Total Governance

2019 £000 2019 £000 172 280 172 420 280 162 420 23 162 1,057 23

2018 £000 2018 £000 156 258 156 342 258 146 342 24 146 926 24

1,057for each of 926 Total costs have been allocated across the activities on the basis of expenditure incurred These the activities.  

These costs have been allocated across the activities the basis of expenditure incurred forincludes each ofadvocacy, the activities. ‘Access to care’ includes Policy, Communications and on training activities. ‘Independent living’ care, equipment grants and Trailblazers. ‘Access to care’ includes Policy, Communications and training activities. ‘Independent living’ includes advocacy, care, equipment grantsincludes and Trailblazers. ‘Welfare Grants’ grants made through the Joseph Patrick Trust to individuals.



‘Welfare Grants’ includes Josephexpenses. Patrick Trust to individuals. ‘Governance‘ includes thegrants annualmade auditthrough fee and the Trustees



‘Governance‘ includes the annual audit fee and Trustees expenses.



4. STAFF COSTS (Group and Parent Charity) 4. STAFF COSTS (Group and Parent Charity) Remuneration of Staff Wages and Salaries Remuneration of Staff Social Security Costs Wages and Salaries Pensions Social Security Costs Total Pensions

2019 £000 2019 £000 2,541 245 2,541 126 245 2,912 126

2018 £000 2018 £000 2,416 234 2,416 103 234 2,753 103

2,912 2,753 Total The monthly average number of employees during the period was 84 (2017/18: 82), of whom there were the following higher paid employees as detailed below. The monthly average numberofofemployees employeesduring during the the period period was of whom whom there higher The monthly average number was 84 84 (2017/18: (2017/18: 82), 82), of therewere werethe thefollowing following paid employees as detailed below. No redundancies wereasmade in the year. No redundancies were made in the year. higher paid employees detailed below. No redundancies were made in the year. Details of the Key Management Personnel, which consists of the Senior Management Team, can be found on page 49. Their Details of the Key salary Management Personnel, which consists of the Senior Leadership Team, can be found on page 50. Their total aggregate was £375k (2017/18: £343k). Details of the Key Management Personnel, which consists of the Senior Management Team, can be found on page 49. Their total aggregate salary was £375k (2017/18: £343k). total aggregate salary was £375k (2017/18: £343k). 2019 2018 No No 2019 2018 Earned between the ranges No No 2 2 £60,000 to £70,000 Earned between the ranges 2 1 £70,000 to £80,000 2 2 £60,000 to £70,000 1 1 £90,000 to £100,000 2 1 £70,000 to £80,000 1 1 £90,000 to £100,000 2019 2018 No No 2019 2018 Number of staff by activity No No 37 39 Direct Charitable Expenditure Number of staff by activity 41 37 Fundraising and Publicity 37 39 Direct Charitable Expenditure 6 6 Management and Administration 41 37 Fundraising and Publicity 84 82 Total 6 6 Management and Administration 84 82 Total Pension Schemes Pension Schemes

Pension Schemes Muscular Dystrophy Group of Great Britain and Northern Ireland There were outstanding contributions of £16,567 (2017/18: £12,198) at the Balance Sheet date. Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

There were outstanding contributions of £16,567 (2017/18: £12,198) at the Balance Sheet date.

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH NOTES TOcontributions THE FINANCIAL STATEMENTS FORSheet THE YEAR There were outstanding of £16,567 (2017/18: £12,198) at the Balance date. 2019 ENDED 31 MARCH 2019 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 5. GRANT EXPENDITURE 2019 5. GRANT EXPENDITURE Research Grants £000

Welfare Grants £000

Total 2019 £000

Total 2018 £000

Grants awarded in the year Grants cancelled in the year Total

2,579 Research Grants2,579 £000

331 Welfare Grants331 £000

2,910 Total 20192,910 £000

3,164 Total (2) 2018 3,162 £000

Grants awarded in the year Grants cancelled in the year Total

Research 2,579 Grants£000 2,579

Welfare 331 Grants£000 331

Total 2,910 2018£000 2,910

3,164 (2) 3,162

Grants awarded in the year Grants cancelled in the year Total

2,861 Research Grants2,861 £000

303 Welfare (2) Grants 301 £000

3,164 Total (2) 2018 3,162 £000

5. GRANT EXPENDITURE

With the exception welfare A list of grants to institutions 2,861 all grants are 303paid to institutions. 3,164 Grants awarded inofthe year grants that are paid to individuals, isGrants available from theinregistered (2) (2) cancelled the year office. Total With the exception of welfare grants that are paid 2,861 3,162 to individuals,301 all grants are paid to Apart from the three strategic grants at University of Oxford, Royal Holloway and UCL, there were no institutions in receipt of institutions. A list pa) of grants to institutions is available from the registered office. material (over in 2018/19. With the grants exception of £80k 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 date, the charity had conditional grant commitments that Holloway had not been in the accounts as the Apart sheet from the three strategic grants at University of Oxford, Royal andaccrued UCL, there criteria relating to payment in subsequent years had not been met, as follows: Apart from the three strategic grants at University of Oxford, Royal Holloway and UCL, there were no institutions in receipt of

were no institutions in receipt of material grants (over £80k pa) in 2018/19.

material grants (over £80k pa) in 2018/19.

At thesheet balance sheet charity had conditional grant commitments not been At the balance date, the date, charitythe had conditional grant commitments that had not that beenhad accrued in the accounts as the 2019 2018 criteria relating to in payment in subsequent years had not been met, as in follows: accrued the accounts as the criteria relating to payment subsequent years had not been £000 £000 met, as follows:

Payable between one and five years Reconciliation of grant funding commitments :

5,953 2019 £000

Research

Total

2019 £000

4,888 2019 £000

Research

Additions Amounts charged in year Carrying amount at start of year

4,621 2019 2,579 £000 (1,628) 4,621

JPT 267 2019 331 £000 (217) 267

4,888 2019 2,910 £000 (1,845) 4,888

Carrying amount at end of year Additions Amounts charged in year

5,572 2,579 (1,628)

381 331 (217)

5,953 2,910 (1,845)

Carrying amount at end of year

5,572

381

5,953

Payable between one and five years Reconciliation of grant funding commitments : Carrying amount at start of year

5,953 2019 £000

JPT

4,888 2018 £000

Total

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Muscular Dystrophy Group of Great Britain and Northern Ireland

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 6. OPERATING LEASE COMMITMENTS Muscular Dystrophy UK is committed to the following minimum lease commitments under a non-cancellable operating lease on its headquarters and shop lease and office equipment. 2019 2018 £000 £000 258 758 0

Expiring up to one year Expiring between one and five years Expiring after more than five years

132 1,015 0

7. NET INCOME Net Income is stated after charging

Auditor’s remuneration excluding VAT Depreciation Operating lease rentals

2019 £000

2018 £000

21 66 233

21 67 246

8. TANGIBLE FIXED ASSETS Group and Parent Charity

Leasehold Premises £000

Computer equipment £000

Cost at 1 April 2018 Disposal Additions

201 -

358 31

100 8

At 31 March 2019

201

389

97 20

At 31 March 2019 Net Book Value At 31 March 2019 At 31 March 2018

Depreciation 1 April 2018 Disposal Provided for year

Motor Other cars equipment £000 £000

Other Assets £000

Total £000

48 -

15 -

722 39

108

761

282 34

87 11

46 1

512 66

117

316

578

84 104

73 76

10 13

1 2

15 15

183 210

All tangible fixed assets are used in the promotion of Muscular Dystrophy UK’s work; none is held for investment. Muscular Dystrophy Group of Great Britain and Northern Ireland Included in other assets are three portraits especially commissioned by the charity; they are held at a cost of £15k. In the opinion of the Trustees, they are worth not less than this valuation and as such no depreciation is charged.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

All tangible fixed assets are used in the promotion of Muscular Dystrophy UK’s work; none is held for investment. Included in All tangible fixed are usedespecially in the promotion of Muscular UK’sare work; is held for investment. Included in Other Assets are assets three portraits commissioned by theDystrophy charity; they heldnone at a cost of £15k. In the opinion of the Other Assets are three portraits especially commissioned by the charity; they are held at a cost of £15k. In the opinion of the Trustees, they are worth not less than this valuation and as such no depreciation is charged. Trustees, they are worth not less than this valuation and as such no depreciation is charged.

NOTES TO THE FINANCIAL STATEMENTS THE YEAR31 NOTES THE STATEMENTS FOR YEAR ENDED NOTES TO TO THE FINANCIAL FINANCIAL STATEMENTS FOR THE THEFOR YEAR ENDED 31 MARCH MARCH 2019 2019 ENDED 31 MARCH 2019 9. Investments 9. INVESTMENTS 9. INVESTMENTS

Market Value at beginning of year Market Value at beginning of year Acquisitions Acquisitions Sales proceeds Sales proceeds

Group Group

Charity Charity

2019 2019 £000 £000

2018 2018 £000 £000

2019 2019 £000 £000

Charity Charity Restated Restated 2018 2018 £000 £000

5,207 5,207 1,509 1,509 (1,533) (1,533) 5,183 5,183 (77) (77) 215 215

6,174 6,174 783 783 (1,697) (1,697) 5,260 5,260 219 219 (272) (272)

4,856 4,856 1,460 1,460 (1,482) (1,482) 4,834 4,834 (80) (80) 207 207

5,812 5,812 657 657 (1,569) (1,569) 4,900 4,900 170 170 (214) (214)

5,207 5,207 4,293 4,293

4,961 4,961 3,928 3,928

4,856 4,856 3,977 3,977

Realised gain / (loss) on disposals Realised gain / (loss) onon disposals Unrealised gain / (loss) revaluation of Unrealised gain / (loss) on revaluation of Investments Investments Market value at end of year 5,321 Market value at end of year 5,321 Historical Cost at end of year 4,244 Historical Cost at end of year 4,244 Spread of Investments Spread of Investments The investments of Muscular Dystrophy UK are held as follows: The investments of Muscular Dystrophy UK are held as follows:

Investments listed on a recognised Stock Investments listed a recognised Stock Exchange and Uniton Trusts Exchange and Unit Trusts - UK and Overseas equities -- UK equities UK and and Overseas Overseas fixed interest -- Property UK and Overseas fixed interest funds -- Property funds Hedge funds - Hedge funds Cash on Deposit awaiting investment Cash on equities Deposit awaiting investment Unlisted Unlisted equities Total Total

Group Group

Charity Charity

2019 2019 £000 £000

2018 2018 £000 £000

2019 2019 £000 £000

Charity Charity Restated Restated 2018 2018 £000 £000

2,957 2,957 1,325 1,325 473 473 213 213 4,968 4,968 291 291 62 62 5,321 5,321

2,782 2,782 1,432 1,432 434 4344,6484,648 497 497 62 62 5,207 5,207

2,696 2,696 1,283 1,283 436 436 198 198 4,613 4,613 286 286 62 62 4,961 4,961

2,506 2,506 1,395 1,395 434 4344,3354,335 459 459 62 62 4,856 4,856

The unlisted equity investment has been valued at its likely realisable value. The unlistedmanagement equity investment been valued its likely realisable value. Investment costs has for the year wereat £25k. Investment management costs for the year were £25k. There was no individual investment that constituted more than five percent of the total investment portfolio (at market value) as There was no individual investment constituted more than five percent of the total investment portfolio (at market value) as at the year end. (2018 : Lloyds Bankthat Fixed Interest £918k) at the year end. (2018 : Lloyds Bank Fixed Interest £918k)

Muscular Dystrophy Group of Great Britain and Northern Ireland Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES THE FINANCIAL STATEMENTS FOR THE YEAR NOTESTO TO THE FINANCIAL STATEMENTS FOR THEENDED YEAR 31 MARCH 2019 ENDED 31 MARCH 2019 NOTES TO THEINVESTMENTS FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 10. INCOME FROM INVESTMENTS 10. INCOME FROM 2019 10.

Group 2019 £000

INCOME FROM INVESTMENTS

UK Equities, UK fixed interest and other Short term Deposit and Bank interest

Group 2018 £000

163 Group 37 2019 200 £000

215 Group 33 2018 248 £000

163 UK Equities, UK fixed interest and other 11. INVESTMENTS SUBSIDIARY UNDERTAKINGS 37 Short term Deposit and IN Bank interest

11.

Charity 2019 £000

INVESTMENTS IN SUBSIDIARY UNDERTAKINGS 200

Charity 2018 £000

150 Charity 37 2019 187 £000

201 Charity 33 2018 234 £000

150 37 187

201 33 234

215 33 248

The of Muscular Dystrophy UK (i.e.UK ‘charity’ accounts) incorporate the results ofthe the results followingofentity Theaccounts accounts of Muscular Dystrophy (i.e. ‘charity’ accounts) incorporate the on a line-by-line basis:

following entity on a line-by-line basis:

Joseph Trust, a separately registeredUNDERTAKINGS charity, 294475, which makes grants towards welfare equipment. Muscular 11.• Patrick INVESTMENTS IN SUBSIDIARY Joseph Patrick Trust, a separately registered charity, 294475, which makes grants Dystrophy UK is the sole corporate Trustee. The Trust shares a registered office with Muscular Dystrophy UK. • The consolidated ofDystrophy MuscularUK Dystrophy UKDystrophy incorporate the is results of the Muscular Dystrophy Group (Trading) towards welfare Muscular the sole corporate Trustee. The accounts ofaccounts Muscularequipment. (i.e. ‘charity’ accounts) UK incorporate the results of the followingThe entity on a line-by-line Limited, 893086, which undertakes trading activities on behalf of the charity and covenants all profits to the charity. basis: Trust shares a registered office with Muscular Dystrophy UK. • They are both registered at 61A Great Suffolk Street, London, SE1 0BU. • Joseph Patrick Trust, a separately registered charity, 294475, which makes grants towards welfare equipment. Muscular • The consolidated accounts of Muscular Dystrophy UK incorporate the results of the Dystrophy UK is the sole corporate Trustee. The Trust shares a registered office with Muscular Dystrophy UK. Muscular Dystrophy Group (Trading) 893086, undertakes trading • The consolidated accounts of Muscular DystrophyLimited, UK incorporate the which results of the Muscular Dystrophy Group (Trading) Limited, 893086, which undertakes trading activities on behalf of the charity and covenants all onresults behalf charity covenants allsummarised profits to the charity. profits to the charity. Their netactivities assets and forof thethe year ended and 31 March 2019 are below: • They are both registered at 61A Great Suffolk Street, London, SE1 0BU. • They are both registered at 61A Great Suffolk Street, London, SE1 0BU. Muscular Joseph Patrick Dystrophy Trust Group Their assetsand andresults results ended 31 March 2019 are summarised below: Their net net assets for for the the yearyear ended 31 March 2019 are summarised below: (Trading) Ltd Muscular Joseph Patrick £000 £000 Dystrophy Trust Group 360 Fixed Assets (Trading) 334 312 Current Assets Ltd (364) (624) Current Liabilities £000 £000 Total Net (Liabilities)/Assets (30) 48 Represented by: 360 Fixed Assets Total Funds (30) 48 334 312 Current Assets (364) (624) Current Liabilities 97 238 Total income Total Net (Liabilities)/Assets (30) (77) (350)48 Total expenditure Represented by: 20 (112) Surplus/(Deficit) for the year Total Funds (30) 48 •

Total income Country of Registration Total expenditure Number of fully paid £1 ordinary shares Surplus/(Deficit) forbythe year Dystrophy UK Voting rights owned Muscular Dystrophy Group of Great Britain and Northern Ireland Country Muscular of Registration Number of fully paid £1 ordinary shares Voting rights owned by Muscular Dystrophy UK

England97 (77) 100 100%20

238 England (350) (112) 100%

England 100 100%

England 100%

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

The Joseph Patrick Trust is no longer incorporated in the Charity’s figures which are reported in these accounts alongsid those of the Group. The Charity’s figures have been restated to take account of this. The Joseph Patrick Trust inclusion Group’s figures remains unchanged.

The Joseph Patrick Trust is no longer incorporated in the Charity’s figures which are reported in these accounts alongside those of the Group. The Charity’s figures have been restated to take account of this. The Joseph Patrick Trust inclusion in Group’s figures remains unchanged.

NOTES THE FINANCIAL STATEMENTS FOR THE YEAR NOTES TOTO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MAR ENDED 31 MARCH 2019 2019 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MAR 12. STOCK The stock held in Muscular Dystrophy Group (Trading) Ltd represents new goods available for 2019 12. STOCK

£12k (2018 : £13k). Group (Trading) Ltd represents new goods available for sale valued at £12k (2018 The sale stockvalued held inatMuscular Dystrophy £13k).

13. DEBTORS 12. STOCK 13. DEBTORS The stock held in Muscular Dystrophy Group (Trading) Ltd represents new goods available for sale valued at £12k (2018 : £13k).

13. DEBTORS

Group

Charity

2019

2018

2019

Group £000

Charity £000

Charity Restated 2018

Charity £000 Restated 2018 8

2019 201846 201910 116 Trade debtors 528 597 Amount due from subsidiary undertakings £000 £000 £000 £000 579 532 575 532 Prepayments and accrued income 39 73 39 70 Other debtors 116 46 10 8 Trade debtors 734 651 1,152 1,207 528 597 Amount due from subsidiary undertakings 579 532 575 532 Prepayments and accrued income All amounts are due within one year, and all intra group balances are unsecured and do not bear interest. 39 73 39 70 Other debtors 734 651 1,152 1,207 All amounts are due within one year, and all intra ONE groupYEAR balances are unsecured and do not bear interest. 14. CREDITORS FALLING DUE WITHIN

14. CREDITORS FALLING DUE WITHIN ONE YEAR

Group

Charity

14. CREDITORS FALLING DUE WITHIN ONE YEAR £000

2019

2018 £000 Group

2019 £000 Charity

5,953 2019 497 £00068

4,888 2018 293 £00061

5,572 2019 438 £00068

Group

Accruals for grant payable Accruals and Deferred Income Taxation and Social Security Other Creditors Accruals for grant payable Accruals and Deferred Income Taxation and Social Security Other Creditors

523 5,953 7,041 497 68 523 7,041

312 4,888 5,554 293 61 312 5,554

502 5,572 6,580 438 68 502 6,580

Charity Restated 2018 £000 Charity Restated 4,620 2018 293 £00061 298 4,620 5,272 293 61 298 5,272

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 15. FUNDS April 2018 £000

£000

March 2019 £000

387

(55)

8 54 22

4 32 4

(12) (45) (15)

41 11

159 72

12 2,011 290

(135) (3) (197)

11 -

47 2,008 165

363 258 242 15 209 240 104 68 83

5 164 4 12 505 82 61 19 -

(21) (5) (207) (297) (183) (47) (75) (41)

342 215 246 27 417 139 118 12 42

601

330

(402)

529

Total Restricted Funds

2,914

3,615

(1,740)

4,800

Designated Funds Research Clinical Tangible Assets for Charity Use Total Designated Funds

1,939 447 210 2,596

(863) (27) (890)

1,076 447 183 1,706

General Fund

1,555

5,382

(5,907)

127

1,157

Total Unrestricted Funds Total Funds

4,151 7,065

5,382 8,997

(6,797) (8,537)

127 138

2,863 7,663

Income

Investment gains

Expenditure

Endowment Fund Orchid Ball Endowment Fund Restricted Funds Provision of care City Bridge Trust / Work experience Comic relief Psychological support Powerchair football Joseph Patrick Trust - Assistive Technology Changing Places Other care Research The Patrick Research Fund Attenborough Fellowship Oxford Neuromuscular Centre Q Trust Fellowship Walton Fund Duchenne Research Ullrich Research Nemaline Research Congenital MD Montague Thompson Coon Charitable Trust Other research

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MAR

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 2017/18 Comparatives Endowment Funds Orchid Ball Endowment Fund Restricted Funds Provision of care City Bridge Trust / Work experience Comic relief Psychological support Powerchair football Other care Joseph Patrick Trust Assistive Technology

April 2017 £000

£000

March 2018 £000

387

(1)

387

(58)

22 93 169 138

36 57 22 108 26 50

(50) (3) (129) (313) (29)

(10) -

128 -

8 54 22 72 159

Income

Expenditure

Investment Transfer gains

Research The Patrick Research Fund Attenborough Fellowship Q Trust Fellowship Walton Fund Duchenne Research Ullrich Research Nemaline Research Congenital MD Montague Thompson Coon Charitable Trust Other research

363 28 236 15 330 222 119 48 159

17 6 771 96 110 20 -

(65) (913) (78) (125) (76)

20 21 -

363 242 15 209 240 104 68 83

1,055

781

(936)

(41)

859

Total Restricted Funds

3,395

2,176

(2,776)

(9)

128

2,914

Designated Funds Research Clinical Tangible Assets for Charity Use Total Designated Funds

2,587 500 209 3,296

1 1

(648) (53) (701)

1,939 447 210 2,596

General Fund

1,565

4,982

(4,820)

(44)

(128)

1,555

Total Unrestricted Funds Total Funds

4,861 8,256

4,983 7,159

(5,521) (8,297)

(44) (53)

(128) -

4,151 7,065

NOTES TO THE FINANCIAL STATEMENTS THE YEAR 31 MAR Muscular Dystrophy UK Annual Report and Financial StatementsFOR for the year ended 31 MarchENDED 2019 42 2019

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2019 ENDOWMENT FUND •

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

RESTRICTED FUNDS •

The Joseph Patrick Trust is a restricted trust within Muscular Dystrophy UK as explained in Note 11. Its assets are restricted to ‘provide welfare, relief and support to those living with muscle-wasting conditions’.

•

The Trustees of the Patrick Research Fund previously converted a loan to Muscular

ENDOWMENTDystrophy FUND UK into a fund to be applied towards research for a cure for DMD.  The Orchid Ball Fund is an endowed fund, the income from which (shown separately) is restricted in the first instance • and Other fundsinrepresent restricted fundsinraised for specific research or projects. research welfare Scotland.other Any unused income a financial period is then directed to funding research.

RESTRICTED FUNDS FUNDS UNRESTRICTED  The Joseph Patrick Trust is a restricted trust within Muscular Dystrophy UK as explained in Note 11. Its assets are restric Muscular Dystrophy reservestopolicy reviewed regularly to ensure that the charity has to ‘provide welfare, relief UK’s and support thoseisliving with muscle-wasting conditions’. other reservesFund to meet its present and future in an orderly Trustees cash of theand Patrick Research previously converted a loancommitments to Muscular Dystrophy UK into a fund to be appl  Thesufficient towards research for a cure for DMD. and sustainable manner.  Other funds represent other restricted funds raised for specific research or projects.

The designation of balances is as follows: UNRESTRICTED FUNDS Muscular Dystrophy UK’s reserves policy is reviewed regularly to ensure that the charity has sufficient cash and other • ‘tangible assets for charity use’ represent the amount of unrestricted funds represented reserves to meet its present and future commitments in an orderly and sustainable manner. by these assets

The designation of balances is as follows: • research and clinical designations have been identified as priority areas for spend in • • •

‘tangible assets for three charityyears use’ represent the amount of unrestricted funds represented by these assets the next research and clinical designations have been identified as priority areas for spend in the next two years • the General Fund is available for the ongoing operations of the charity. the General Fund is available for the ongoing operations of the charity.

Represented by: 2019

Endowment Funds Restricted Funds Designated Funds Unrestricted Funds Total Funds Represented by: 2018

Endowment Funds Restricted Funds Designated Funds Unrestricted Funds Total Funds

16. LEGACIES

Fixed Investments Assets £000 £000

Net Current Assets £000

Total

387 2,627 1,523 784 5,321

1,786 373 2,159

387 4,413 1,706 1,157 7,663

Fixed Investments Assets £000 £000

Net Current Assets £000

Total

1,228 420 1,648

387 2,527 2,596 1,555 7,065

183 183

210 210

387 1,299 2,386 1,135 5,207

£000

The charity is entitled to aUK share in aReport number estatesStatements which it monitors closely. following have not been reflecte Muscular Dystrophy Annual andofFinancial for the year ended The 31 March 2019 sums 43 in these financial statements in accordance with the accounting policies set out in Note 1. The potential values of these estates to the charity at the balance sheet date are as follows: 2019 2018

Designated Funds Unrestricted Funds Total Funds

183 183

Represented by: 2018

1,523 784 5,321

373 2,159

1,706 1,157 7,663

Fixed Investments Assets £000 £000

Net Current Assets £000

Total

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR 387 1,299 1,228 ENDED 31 MARCH 2019 210 2,386 -

Endowment Funds Restricted Funds Designated Funds Unrestricted Funds 16. Funds LEGACIES Total

1,135 5,207

210

420 1,648

£000 387 2,527 2,596 1,555 7,065

The charity is entitled to a share in a number of estates which it monitors closely. The

16.following LEGACIES sums have not been reflected in these financial statements in accordance with the

The charity is entitled to a share in a number of estates which it monitors closely. The following sums have not been ref accounting policies set out in Note 1. The potential values of these estates to the charity at in these financial statements in accordance with the accounting policies set out in Note 1. The potential values of these the balance sheetatdate as follows: estates to the charity the are balance sheet date are as follows: 2019 2018 £000 £000 735 250 985

Residuary Reversionary All sums are due to Muscular Dystrophy UK.

1,242 250 1,492

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MA 17. STATUS OF CHARITY 2019 Muscular Dystrophy Group of Great Britain and Northern Ireland, operating as Muscular Dystrophy UK, is a registered charity and a company limited by guarantee. In the event of a

17.winding STATUSup,OF CHARITY Members are required to contribute an amount not exceeding £1. By virtue of

Muscular Dystrophy Great Britain and Northern Ireland Muscular Dystrophy Group ofGroup GreatofBritain and Northern Ireland, operating as Muscular Dystrophy UK, is a registered c of the Companies Act 2006, the charity use ‘limited’ in its name. ands.30 a company limited by guarantee. In the eventdoes of a not winding up, Members are required to contribute an amount not exceeding £1. By virtue of s.30 of the Companies Act 2006, the charity does not use ‘limited’ in its name.

18. RELATED PARTY TRANSACTIONS 18.During RELATED PARTY TRANSACTIONS the year Trustees of Muscular Dystrophy UK made donations and received

During the year Trustees of Muscular Dystrophy UK made donations and received reimbursement of their expenses inc reimbursement their expenses incurred travelling attend Muscular Dystrophy UK’s in travelling to attendofMuscular Dystrophy UK’s in business, as to follows

business, as follows

Donations Expenses (5 Trustees : 4 in 2017/18)

2019 £000

2018 £000

17 4

11 2

No Trustee received any remuneration during the year (2018 £nil).

19. RESTATEMENT OF CHARITY’S COMPARATIVES

The Joseph Patrick Trust (registered charity number 294475) is a charity registered with the Charity Commission in Eng and Wales and has Muscular Dystrophy UK as its sole corporate trustee. In 2018 the Joseph Patrick Trust results and assets were included in the Muscular Dystrophy UK parent charity figures as a separate restricted fund on the basis tha the criteria of a linked charity. It is now considered more appropriate to treat the Joseph Patrick Trust as a subsidiary ch Muscular Dystrophy UK and accordingly the 2018 parent charity only figures have been restated accordingly. The following table summarises the changes.

Investments

Muscular Dystrophy UK 44 Debtors

Cash and bank Creditors Funds

Parent Adjustment charity’s figures as stated in 2018

2018 as Restated

£’000

5,417 1,073 6,165 (5,540) 7,115

(351) 134 (214) 268 (163)

5,066 1,207 5,951 (5,272) 6,952

Annual Report and Financial Statements for the year ended 31 March 2019

During the year Trustees of Muscular Dystrophy UK made donations and received reimbursement of their expenses inc in travelling to attend Muscular Dystrophy UK’s business, as follows

Donations Expenses (5 Trustees : 4 in 2017/18)

19. RESTATEMENT OF CHARITY’S COMPARATIVES

2019 £000

2018 £000

17 4

11 2

Joseph Patrickany Trust (registeredduring charitythe number 294475) No The Trustee received remuneration year (2018 £nil).is a charity registered with

the Charity Commission in England and Wales and has Muscular Dystrophy UK as its sole corporate trustee. In 2018 the Joseph Patrick Trust results and net assets were included in 19.the RESTATEMENT OF CHARITY’S Muscular Dystrophy UK parentCOMPARATIVES charity figures as a separate restricted fund on the basis The Joseph Patrick Trust (registered charity number 294475) is a charity registered with the Charity Commission in Eng that it met the criteria of a linked charity. It is now considered more appropriate to treat the and Wales and has Muscular Dystrophy UK as its sole corporate trustee. In 2018 the Joseph Patrick Trust results and Joseph Trust as aMuscular subsidiary charity ofUK Muscular Dystrophy UKas and accordingly the fund on the basis tha parent charity figures a separate restricted assets werePatrick included in the Dystrophy the 2018 criteria of a linked charity. It is now considered more appropriate parent charity only figures have been restated accordingly.to treat the Joseph Patrick Trust as a subsidiary ch Muscular Dystrophy UK and accordingly the 2018 parent charity only figures have been restated accordingly.

following summarises the changes. TheThe following tabletable summarises the changes.

Investments Debtors Cash and bank Creditors Funds

Parent Adjustment charity’s figures as stated in 2018

2018 as Restated

£’000

5,417 1,073 6,165 (5,540) 7,115

(351) 134 (214) 268 (163)

5,066 1,207 5,951 (5,272) 6,952

Muscular Dystrophy Group of Great Britain and Northern Ireland

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Presidents, Board of Trustees and Committees Patron HRH The Prince Philip, Duke of Edinburgh KG KT OM GBE ONZ QSO AK GCL CC CMM

President Gabby Logan (since October 2018) Sue Barker OBE (until October 2018)

Honorary Life Presidents J Alexander Patrick CBE DL Professor Martin Bobrow CBE FRS FMed Sci Sue Barker OBE (since October 2018)

Our Vice Presidents The Hon. Michael Attenborough CBE Karen Attenborough Sophia Bergqvist Frances Carey Jeremy Champion Candida Crewe Charity Crewe Sebastian Crewe Sir Alex Ferguson CBE Andrew Graham Matthew Kelly Sarah Kelly Simon Knights Charles Manby Nicola Manby Andrew Martin Valerie Patrick Jeremy Pelczer Julian Pritchard Michael A Thirkettle Baroness Celia Thomas of Winchester MBE Andrew J Weir Guy Weston

Our Research Vice Presidents Professor Kate Bushby MD Professor Patrick Chinnery FRCP FMedSci Professor Dame Kay Davies DBE FRS FMed Sci Professor George Dickson PhD

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Dr David Hilton-Jones MA MD FRCP FRCPE Professor Darren Monckton PhD Professor Francesco Muntoni FRCPCH FMed Sci Professor Volker Straub Professor Douglas M Turnbull MBBS (Hons), MD, PhD, FRCP Professor Matthew Wood MBChB MA DPhil

Joseph Patrick Trust Grants Panel Robert Warner (Chair) Karen Duckmanton Jane Field Jane Freebody James Lee Patricia Lock Julian Pritchard Kirsty Read

Joseph Patrick Trust Management Committee Alexander Patrick CBE DL (Chair) Julian Pritchard Ian T Gordon Robert Warner

Finance Committee Marcus Brown (Chair) Ian T Gordon Andrew Graham Helene Crutzen Ian Mathieson Charles Scott Caroline Williams

Appointments and Remuneration Committee Professor Mike Hanna FRCP MD MRCP BM BCh (Chair) Ian T Gordon Richard Price Baroness Celia Thomas of Winchester MBE

Medical Research Committee Professor Hugh Willison MBBS PhD (Chair) Professor Thomas Braun Dr med Dr rer. nat. Professor Ray Fitzpatrick BA MA MSc PhD F Med Sci Professor Thomas Gillingwater MBA PhD Dr Anna Mayhew PhD

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Dr Jasper Morrow MBChB PhD FRACP Professor Olivier Pourquie PhD Professor Mary Reilly MD FRCP FRCPI Professor Marco Sandri MD Professor Stephen Sawcer MBChB PhD Professor Ulrike Schara MD PhD Professor Benedikt Schoser, Prof Dr med Professor Baziel van Engelen MA MD PhD Professor Dominic Wells MA VetMB PhD MRCVS FHEA FS (Deputy Chair)

Lay Research Committee Alex Williamson (Chair) Naima Ali-Khan Peter Ashley Richard Davenport (Vice Chair) Corinthia Joseph Alison Kay Stephen Meech Roger Porcherot Hilary Rattue Roli Roberts (Scientific advisor) Andy Rose Helen Stockdale Manoj Thakrar Trevor Thomas Natalie Woodcock

Services Development Committee Baroness Celia Thomas of Winchester MBE (Chair) Dr Chiara Marini-Bettolo Phillippa Farrant Sheila Hawkins Professor Deirdre Kelly Sue Manning Professor Francesco Muntoni Dr Ros Quinlivan Carolyn Young Tanvi Vyas

Appeal Board The Appeal Board is a group of Senior Volunteers who meet quarterly to help raise funds and awareness through their extended networks. Jeremy Pelczer (Chair) Karen Attenborough Martin Cardoe

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Alex Elberg Tim Lumsdon Charles Scott

Northern Ireland Council Claire O’Hanlon (Chair) Marie Hollywood (Vice Chair) Clare Boylan (Secretary) Graham Cloke (Treasurer) Art Connolly Leona Connolly Phillip Ellis Hayley Ellis Suzanne Glover Lucy Hare Michael Hollywood Anne Hughes Corman McAteer Dave McLean Jaci McFetridge Jim McKeogh Kerry McStravog Niamh Mullan Conor O’Kane Mairead Scott Catherine Taggart

Scottish Council Dr Sheonad Macfarlane BSc Med Sci MB ChB (Chair) Lindsey Armstrong Michael Armstrong Connor Colhoun David Davidson Claire Eadie David Gale Catherine Gillies Craig Hamilton Mairi Leitch Scott McIntyre Gill Mitan Allyson Townhill Stuart Townhill

Board of Trustees Professor Michael Hanna FRCP MD MRCP BM BCh (Chair)

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

Marcus Brown (Treasurer) Ian T Gordon Andrew Graham Sheila Hawkins Louisa Hill Dr Amy Jayne McKnight PhD Richard Price Charles Scott Baroness Celia Thomas of Winchester MBE Tanvi Vyas Robert Warner

Senior Leadership Team Robert Meadowcroft Chief Executive Officer (until September 2018) Catherine Woodhead, Chief Executive Officer (since September 2018) Dr Kate Adcock, Director of Research and Innovation Rob Burley, Director of Campaigns, Care and Support Nikki Hill, Director of Communications and Marketing Alec Raven, Director of Development Jenny Howard, Director of Finance (until March 2019)

With gratitude We are extremely grateful to so many people and organisations for their significant support this year: Alexander Acloque Anderson Strathern APL BGC International L P Bill and Jacky Ronald Bolt Burdon Brit Insurance CeX Charles and Nicola Manby Comic Relief Dan and Claire Parker Frances Carey Full Story Marketing Gill and George Hubb Henry Oldfield Trust Hogan Lovells Ian and Ann McNeil Jeremy and Mary Champion John Booth Charitable Foundation

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

John G. Watson MAP Nemaline Matalan Retail Limited McBains Mrs Gladys Row Fogo Charitable Trust OneFamily Old Mutual Wealth PTC Therapeutics Peter and Frances Meyer Portview Mayo Marriott Mackie’s at Taypack Oison Crawley Rubik’s Cube Sally Whittet The 41 Club The Annandale Charitable Trust The Belfast Cathedral Sitout The Barbour Foundation The Broughton Charitable Trust The Charles and Elsie Sykes Trust The City Bridge Trust The Constance Travis Charitable Trust The Cranbury Foundation The D’Oyly Carte Charitable Trust The Eveson Charitable Trust The Ian Fleming Charitable Trust The Inman Charity The Northwood Charitable Trust The Sir Samuel Scott of Yews Trust The Templeton Goodwill Trust The William Allen Young Charitable Trust Tony and Monica Moorwood The Exilarch’s Foundation The Adint Charitable Trust The Albert Edward Procter Charitable Trust The Ann Jane Green Trust The Annett Charitable Trust The Annie Tranmer Charitable Trust The Bank of Scotland Foundation The Boost Charitable Trust The Chapman Charitable Trust The Charles S French Charitable Trust The Clapp Family Charitable Trust The D D McPhail Charitable Settlement The Denley Family Settlement The Dudley and Geoffrey Cox Charitable Trust Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019

The Fowler, Smith and Jones Trust The George Moore Foundation The Gordon Fraser Charitable Trust The Grace Trust The IBB Trust The JK Young Endowment Fund The JAH Trust The James Weir Foundation The JFH Wiseman Will Trust The Joseph Strong Fraser Trust The Lawson Trust The Liz and Terry Bramall Foundation The Lord Belstead Charitable Trust The Lord Faringdon Charitable Trust The MEB Charitable Trust The Melville Charitable Trust The N Smith Charitable Settlement The Norah and Fred Roberts Memorial Trust The PF Charitable Trust The Patrick Trust The Roger Vere Foundation The Sir Edward Lewis Foundation The Sir James Knott Trust The Sir James Roll Charitable Trust The Sir John Fisher Foundation The Sunrise (Sidmouth) Charitable Trust The Thomas Sivewright Catto Charitable Trust The Tilehouse Trust The Tom and Sheila Springer Charity We are hugely grateful to our enthusiastic and generous committee members whose support and tireless commitment make our events the success that they are: the Microscope Ball Committee, Sports Quiz Committee, The Q Trust, The Clay Pigeon Shoot Committee and the Appeal Board. We also value the dedication and commitment of those who fundraise for us through our Branches, Groups and Family Funds. Thank you â&#x20AC;&#x201C; your efforts make a huge difference in the fight against muscle-wasting conditions. Muscular Dystrophy UK relies almost entirely on voluntary donations and legacies to fund our vital work. We receive no government funding for our core charitable activities. Our Campaigns, Care and Support team is currently administering a grant provided by the Department of Transport to expand the availability of Changing Places Toilets across the motorway network in England. While we cannot list every individual here, please know that we are sincerely grateful to everyone who has donated and fundraised for our work over the past year.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2019