Financial 2017

Annual Report and Financial Statements

Year ended 31 March 2017

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Accelerate research Drive change for access Empower independent living

Report of the Board of Trustees 2016/17 1

Report of the Board of Trustees (incorporating the Strategic Report)

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Statement of Trustees’ Responsibilities

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Independent Auditor’s Report to the Trustees and Members of the Muscular Dystrophy Group of Great Britain and Northern Ireland

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Consolidated Statement of Financial Activities

20

5

Balance Sheet (Group and Charity)

21

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Consolidated Cash Flow Statement

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Notes to the Financial Statements

23-35

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

36-39

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Senior management team and advisors

10 With gratitude

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3-16 17 18-19

40 41-43

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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 2017.

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.

We ensure access to specialist NHS care and support.

We provide services and promote opportunities to enable individuals and their 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 to bring treatments and cures closer to reality.

Our values

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

We are inclusive: we are working to ensure there is support and treatment for everyone living with muscle-wasting conditions in the UK. We are collaborative: we work in partnership across the UK and internationally to maximise our impact.

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 musclewasting conditions.

We are determined: we have been leading the fight against muscle-wasting conditions for more than 50 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.

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.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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The work of Muscular Dystrophy UK

Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. Founded in 1959, we have been leading the fight against muscle-wasting conditions since then. We bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults in the UK. The charity plays a key role in the progress being made towards achieving this vision. We are committed to: accelerating research to develop effective treatments and cures driving change for access to specialist care and support empowering individuals and improving quality of life by enabling independent living.

Muscle-wasting conditions are a group of rare and very rare conditions. Compared to the more common acute conditions, they do not receive the same priority in research funding or in investment in clinical care. The charity has made important contributions over the years 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, enhance 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.

Achievements and performance against objectives for 2016/17 Overview

Performance Indicators

Progress in year

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

We have funded high-quality research, developing partnerships with the scientific community and industry, increasing clinical trial capacity in UK and letting our supporters know about current research developments.

We have successfully secured specialist posts, supported clinical networks and equipped community healthcare professionals regarding muscle-wasting conditions.

We have successfully advocated for people’s rights, connected them in communities, encouraged activism, heard the voice of young people, provided personal support systems and information.

We have exceeded our target for fundraising this year. We have involved more people in events and have continued to develop our condition-specific appeals to accelerate progress in research.

To ensure access to specialist NHS care from a multidisciplinary team

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

Fundraising

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

Key priority 1

Accelerating research to develop effective treatments and cures One of our priorities is to support research, with the goal of identifying effective treatments and cures for all muscle-wasting conditions.

We continued to invest in high-quality research during the past year, and saw much progress. It brought us closer not only to understanding the underlying causes of muscle-wasting conditions, but also to developing potential therapeutic approaches and improving quality of life.

It was a year in which we saw Translarna – the firstever licensed treatment to address an underlying cause of Duchenne muscular – become available on the NHS. This treatment will mean that boys in the UK, who are eligible for Translarna, could potentially walk for longer.

Mitochondrial donation IVF also gained approval for use in clinics throughout the UK. We funded early-stage research for this in Newcastle for more than 10 years. The groundbreaking technique reduces the risk of mitochondrial disease being passed from mother to child.

We committed £4.15m into new strategic research projects. We believe these investments will have a profound impact on lives, from the moment of diagnosis – not only improving quality of life but also seeking to extend lives.

Our Medical Research Committee identifies and reviews strategic areas of promising research, with the potential to bring new treatments to clinics and to improve quality of life. During the past year, we strengthened this Committee further by recruiting seven new panel members, with a broad range of expertise.

We also boosted clinical trial capacity for UK patients, by investing in new posts. This brings to four the number of posts we fund in Newcastle, London and Liverpool. We also collaborated with local and international partners, and continued our support of UK registries for myotonic dystrophy and FSHD.

Highlights from 2016/17 Charity Times

PR Team of the Year

£1.5m+ invested in 39 research grants

for Translarna campaign

£10,500

2

international grants awarded for nemaline myopathy research

£4.15m invested in strategic research projects over five years

invested in a trial to improve quality of life

Research funding partnerships:

£65k – Duchenne Forum £68k – Scottish Office £94k – SMA Trust £66k – Collagen VI Alliance New and ongoing research into

£122,346 invested in 3 clinical and research

fellowships

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muscle-wasting conditions

Funding high-quality research facilitating partnerships with the scientific community and industry increasing clinical trial capacity for UK patients

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Key priority 2

Driving change for access to specialist care and support A second key priority for us is making sure individuals and families have access to treatments, and to specialist care as close as possible to where they live.

support for people with muscle-wasting conditions.

This means that ambulance crews will have vital information about patients before they get to them, in times of emergency. We will expand this initiative to other regions in the year ahead.

Our campaign for faster access to emerging treatments took significant strides forward during the past 12 months, when NHS approved funding for the first-ever Duchenne drug, Translarna.

Our Right to breathe campaign moved us closer towards achieving equitable access to cough assist machines for people with muscle-wasting conditions. Twenty-seven Clinical Commissioning Groups (CCGs) across England decided to fund and commission this vital equipment.

By building strong working relationships with key specialist neuromuscular groups across England, we have continued to be integrally involved in NHS decision-making. Our investment in Here for you: clinic support will also see our staff working alongside healthcare professionals in local clinics across the UK.

After the 2016 elections in Scotland, Wales and Northern Ireland, we secured the support of 35 newly-elected parliamentarians. They signed our Manifesto for Muscle and committed to supporting our work to improve access to specialist care and support for people with muscle-wasting conditions.

Working with the London Ambulance Service, we launched an emergency alert system for priority

Highlights from 2016/17 120+ healthcare professionals trained each month to recognise symptoms

ÂŁ1.2m in welfare

services secured changing the lives of 298 people

100% increase

neuromuscular forums and networks made possible by funding from

clinics, individuals and families for use in emergencies

Comic Relief and Sir James Knott Charitable Trust

investment secured into

9 new NHS-funded

neuromuscular roles

including the Prime Minister backed our campaigns

1,750 alert cards for 11 conditions distributed to

Development of

ÂŁ510k

170 Parliamentarians

241pieces in the

2,466 Muscle

media on PIP and Motability campaigns

Group members got together at meetings across the UK

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Advocating for people’s rights equipping community healthcare professionals securing specialist posts

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Key priority 3

Improving quality of life by enabling independent living Our third major priority is to support individuals and families to live more independently and with improved quality of life.

their quality of life. The launch of our Here for you: mental health matters project will help to press for increased access to psychological support.

During the past year, we helped tackle the Government’s reforms to Personal Independence Payments (PIP) to ensure they considered the needs of disabled people. We did this by bringing the findings of our Focus on disability benefits report to Parliament, highlighting these concerns to key decision-makers. Our training modules for PIP assessors, to help them understand better the needs of people living with muscle-wasting conditions.

Trailblazers, the young disabled campaigners’ network, continued to drive change for equal access.

In their 2016 Transport report they called for the Government to make it unlawful for taxi drivers to refuse to transport wheelchair users or attempt to charge them extra. This campaign met with success in early 2017, when the new law came into effect.

In the past 12 months, our new information resources have helped people with muscle-wasting conditions live more independently and improve

Our teams continued to support individuals and families to get the services, equipment and welfare benefits they are entitled to. We also put people in touch with each other for local support.

Highlights from 2016/17 Every 2 days

brought like-minded people together for peer support

Every 10 minutes we gave support and info to someone in need

increase of 66% £285k awarded in grants

for specialist equipment, improving independence for

231 people

Trailblazers Trailblazers network grew to

722 members

– collective voices for change

17 young disabled

people took part in work experience placements

81families brought together on

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new family fun and sport days across the UK Made possible with funding from the 29th May 1961 Charitable Trust, The John Horniman Charitable Trust, The Eveson Charitable Trust and The Goodenough Charitable Trust

Made possible with funding from the City Bridge Trust

30k Guardian readers

Hear my Voice video

shared our article on need for improved access to housing for disabled people

developed for and by young people with muscle-wasting conditions

Made possible by funding from The Evan Cornish Foundation and The Austin & Hope Pilkington Trust

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Connecting people in communities encouraging activism hearing the voice of young people providing personal support systems and information

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We work in each country and region of the UK, although we are required by the Office of the Scottish Charity Regulator (OSCR) to publish a report on our activities in Scotland.

Scotland Following the publication of our Manifesto for Muscle in the devolved countries for the May 2016 elections, highlighting access to treatments, specialist healthcare and welfare support, we secured the backing of newly elected parliamentarians in the elections for the Scottish Parliament, who we are working with on a regular basis after their commitment to support our activity.

We supported nine-year-old Michael and his family to petition Scottish Government First Minister Nicola Sturgeon on access to the Duchenne treatment, Translarna. His petition secured nearly 150,000 signatories and over 50 pieces of media coverage. Nicola Sturgeon met Michael and his family alongside Muscular Dystrophy UK, and following that campaigning pressure, Michael and the other boys eligible for Translarna across Scotland were able to access the treatment through an Individual Patient Treatment Request.

We have continued to support the work of the Scottish Muscle Network, and in 2017 it was awarded Network of Excellence status by Muscular Dystrophy UK, following our first-ever audit of neuromuscular networks. This award acknowledges the Scottish Muscle Network’s outstanding levels of dedicated time to co-ordinate and drive forward neuromuscular care across a number of neuromuscular services in Scotland.

We will continue to grow the Trailblazers network in Scotland. We also held a Young Persons’ Conferences in Scotland (coinciding with our Scottish Conference).

In research, we are committed to furthering the understanding of the underlying basis of neuromuscular conditions and the development of potential new therapies. As part of our UK-wide research programme, we are currently funding two research projects in Scotland, both of which focus on myotonic dystrophy. In addition, we fund three clinical research and training fellowships. One of the fellows is investigating links between genetics and the clinical aspects of myotonic dystrophy, while two of the fellows are undertaking research to improve the clinical management of Duchenne muscular dystrophy. The clinical training and research fellowships are being funded through strategic partnerships with the Chief Scientist Office in Scotland and the Medical Research Council, and partnership funding with Action Duchenne is also in place for one of the Duchenne fellowships.

We secured 123 pieces of media coverage in the devolved nations, particularly from Scottish media. We sent four tailored newsletters to our supporters in Scotland providing relevant updates on our support, activity in the country and new resources available to them.

We must thank all our supporters and volunteers in Scotland for their huge commitment and support in raising vital funds and backing our work. Further, our warm thanks are also due to the members of the Scottish Council, and especially Sheonad Macfarlane as Chair, for their support and guidance.

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

Plans for 2017/18 To support research with the goal of effective treatments and cures being identified for all muscle-wasting conditions As we facilitate a transformational new chapter in the fight against muscle-wasting conditions, we aim to raise significant funds to help deliver three strategic projects: a new neuromuscular centre in Oxford to develop translational research and clinical trials, funding to boost the largest natural history study of Duchenne muscular dystrophy in the world and establishing a clinical trial to look at the safety of gene therapy in people with Duchenne muscular dystrophy.

We will invest in high-quality research to understand the underlying cause of musclewasting conditions, to develop potential therapeutic approaches and to increase quality of life.

We will work closely with the scientific community to identify strategic research areas that hold the promise to bring potential new treatments to the clinic more quickly.

We will invest in national infrastructure to prepare the UK for clinical trials and to ensure a swift bench-to-bedside transition of promising technology.

We will develop and support platforms to facilitate communication and collaboration within the scientific community both nationally and internationally.

We will expand our research communications to families and supporters to become the first port of call for updates on research, clinical trials and the impact of our research investments.

We will develop national and international partnerships to leverage our resources in particular for ultra-rare conditions.

To ensure access to specialist NHS care from a multi-disciplinary team We will protect and extend NHS investment in neuromuscular services through an increase in patient participation in regional neuromuscular forums and networks. We will drive forward the emergence of more clinician-led regional neuromuscular networks.

We will lead on the development of professional education for health professionals. New online training courses will be launched and we will continue to run regional training events, working more closely with NHS trusts.

In Westminster, Cardiff, Edinburgh and Belfast, we will increase the number of parliamentarians supporting our activity on faster access to treatments, better specialist neuromuscular care and enabling people with muscle-wasting conditions to live more independently.

We will continue to extend the series of condition-specific alert cards and build links with regional ambulance services to expand our support for people living with muscle-wasting conditions.

We will continue our Fast Forward campaign to improve the system for assessing and approving emerging treatments.

To provide services and promote opportunities to enable everyone living with a muscle-wasting condition to live as independently as they wish We aim to reach more people with muscle-wasting conditions, as well as their families, making sure they know about the range of support there for them. We will develop more regular Facebook Q&As where people can get their questions answered by experts, tapping into growing demand from supporters for online interaction with us.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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Building on the success of the work of MDUK’s Information and Advocacy Officers in Northern Ireland, Scotland and Wales, we will recruit similar posts based at Great Ormond Street Children’s Hospital in London, the John Walton Centre in Newcastle and at the John Radcliffe Hospital in Oxford. This brand new team of six Information and Advocacy Officers will be managed by MDUK’s new Head of Clinical Development As well as our National and Scottish conferences, we will also hold patient information days for: Becker muscular dystrophy, myotonic dystrophy and FSHD; as well as our ongoing series of ‘Duchenne Dialogue’ events.

As part of our Mental Heath Matters initiative, and together with our expert working group, we will develop new resources to support individuals and families at the point of diagnosis. We will also develop tools targeted at health professionals; enabling them to offer improved support to patients and families.

We will launch a new adaptations manual; offering individuals and families living with the condition guidance around living independently and adapting their homes appropriately.

We will grow the Trailblazers network and develop the employment opportunities for young disabled people by building on our existing scheme. We will launch campaigns and will engage with journalists, stakeholders and parliamentarians. We will boost confidence and quality of life for more young people living with muscle-wasting conditions.

We will further develop our range of support initiatives training healthcare professionals and developing resources and guidance for adults and families living with muscle-wasting conditions.

We will continue to provide support via our advocacy service, while building on our pro bono relationship with the law firms, Hogan Lovells and Anderson Strathern.

We will use proactive and reactive media coverage to provide a platform for families to speak out, raise awareness of the cause and highlight the impact of the charity, with the aim of influencing change and setting the public agenda in relevant areas. We will create quality opportunities for celebrity and ambassador engagement to drive the charity’s profile and our association with influencers. We will increase our reach and engagement across our digital communications platforms to raise awareness and interact with more people living with muscle-wasting conditions.

We will ensure that content provided across all our communications channels is clear, precise and understandable by involving our supporter base in its generation and review.

Fundraising We aim to raise £2,893k net in active fundraised income and, based on our known pipeline, £1,436k net in legacy income, to meet our current charitable commitments to individuals, families and research scientists. We will drive forward a number of significant charitable programme developments by increasing all areas of fundraising.

Muscular Dystrophy UK is committed to conducting its fundraising with integrity and respect and, critically, in ways that enable donors to have control. In 2017/18 we will be updating the ways that our supports can control the way their data are managed, including an update to the privacy policy and preference centre for email communication through the website.

2017/18 sees a transformational new chapter in the fight against muscle-wasting conditions: we aim to raise significant funds to help deliver three strategic projects from a new neuromuscular centre in Oxford for clinical trials, to psychological support for improved quality of life. We aim to raise £1m of multi-year funding from individuals, events, trusts and foundations.

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

A new Appeal Board will be launched, with a new Chair, to help deliver strategic long-term funding for the sustainability of the charity.

Our first charity-wide legacy campaign will be delivered in conjunction with our supporters to deliver future long-term funds, already essential to our future advancement in research, and the care and support of individuals and families.

Financial review

The total income for 2016/17 was £7,675k (2016: £8,340k). Income from donations, gifts, grants and fundraising activities totalled £4,612k (2016: £5,031k). In addition £2,444k was received from legacies (2016: £3,044k). Investment income and other income amounted to £619k (2016: £265k), of which £65k was from the Duchenne Forum, £68k from the Scottish Office, £94k from the SMA Trust and £66k from the Collagen VI alliance, all of which are 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 musclewasting conditions comprised 56 percent of the total expenditure on charitable activities. Access to specialist NHS care and support comprised 28 percent, and provision of information, support and opportunities to enable independent living comprised 16 percent of our charitable activity.

The charity had a successful year financially and ended the year with a net income of £488k (2016: £1,687k). This was achieved while increasing our level of charitable activity. An unrestricted surplus of £68k for the year has maintained the financial strength of the charity. At 31 March 2017, the total unrestricted funds were £4,861k, providing a sound level of reserves for development of our charitable activity in the forthcoming years.

Reserves policy

Total funds at the end of the year stand at £8,256k (2016: £7,768k). Of these £4,861k are unrestricted (2016: £4,793k), £3,008k are restricted (2016: £2,609k) and £387k are endowed (2016: £366k).

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 £1,600k based on the current analysis of risk. The charity’s free reserves were £1,565k at 31 March 2017 (2016: £1,528k). This is after setting up a designated reserve to part-fund three significant new projects over the next five years. These include a new centre for Translational Neuromuscular Science, NorthStar database development and a gene therapy clinical trial. This alongside a clinical trial designation of £500k to ensure that clinical capacity is maintained. Once these investments are completed it is anticipated that reserve levels will then return to the reserves policy level.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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Fundraising statement

Our supporters are key to our advancements in the fight to beat muscle-wasting conditions.

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 to never sell or swap donor data to never rank donors based on wealth not sharing data with external agencies for the purposes of wealth screening.

We will only contact you in the ways that you wish, making use of what you’ve told us and publicly available information (which we may obtain from our suppliers) to tailor our communications so that they are more appropriate and relevant to your interests.

These are actions that enable us to protect vulnerable people and all other members of the public from any behaviour which could be deemed: an unreasonable intrusion on a person’s privacy unreasonably persistent 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 lots of 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 (launched May 2017), legacy administration, an audit and review of our legacy programme, 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 minimum of five 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.

As reported to the Fundraising Regulator, the number of annual complaints received were a total of 18, which derived from the following: one from 47,009 raffle tickets sold; two from 7,539 participants at outdoor events; seven complaints from 663 volunteer fundraising events; eight from 83,288 pieces of direct mail sent out.

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

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

Investment Exchange and Unit Trusts and OEICs (open ended investment companies), which are authorised under the Financial Services and Markets Act 2000. There should be no direct investment in the following: derivative contracts, including futures and options; commodities and derivatives thereof, contracts for differences; hedge funds, structured products.

Remuneration policy

The salaries of the Chief Executive and the senior 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 Remuneration Committee review the performance of the CEO and the senior 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 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 19.

Ethical considerations

It has been decided not to invest directly in tobacco manufacture and distribution. Trustees reserve the right to exclude companies or industry sectors that carry out activities contrary to the aims of the charity, or from holding particular investments 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.

The following risks have been identified as the most significant for the charity’s financial sustainability: a) recognising that 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) recognising the need 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) recognising 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 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 are advising us, and we are working proactively to address this issue.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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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 for the periods 2017/18 to 2021/22, the Board of Trustees considers that there are sufficient reserves held at 31 March 2017 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 36 to 40.

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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 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.

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

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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STATEMENT OF TRUSTEES’ RESPONSIBILITIES The Trustees are responsible for preparing the Trustees’ Annual Report (including the strategic report) and the Financial Statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company and charity law requires the Trustees to prepare financial statements for each financial year. Under company law, the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the group and parent charity and of the incoming resources and application of resources, including its income and expenditure, of the charity for the year. In preparing those Financial Statements, the Trustees are required to: select suitable accounting policies and then apply them consistently 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 charity will continue in business.

The Trustees are responsible for keeping adequate and proper accounting records that are sufficient to show and explain the charity’s transactions and disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities and Trustee Investment (Scotland) Act 2005, regulation 6 and 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and with the requirements of the Companies Act 2006. They are also responsible for safeguarding the assets of the charity and the parent charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the Trustees are aware: there is no relevant audit information of which the charitable company’s auditors are unaware; and the Trustees 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.

Financial statements are published on the charity’s website in accordance with legislation in the United Kingdom governing the preparation and dissemination of financial statements, which may vary from legislation in other jurisdictions. The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charity’s website.

Legislation in the United Kingdom governing the preparation and dissemination of the financial statements and other information included in annual reports may differ from legislation in other jurisdictions.

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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INDEPENDENT AUDITOR’S REPORT TO THE TRUSTEES AND MEMBERS OF MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELAND We have audited the financial statements of Muscular Dystrophy Group of Great Britain and Northern Ireland for the year ended 31 March 2017 which comprises of the Consolidated Statement of Financial Activities, the Group and Parent Charitable Company Balance Sheets, the Consolidated Statement of Cash Flows and the related notes. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

This report is made solely to the charity’s trustees and members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and the Charities and Trustee Investment (Scotland) Act 2005. Our audit work has been undertaken so that we might state to the charity’s trustees and 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 charity and the charity’s trustees and members as a body, for our audit work, for this report, or for the opinions we have formed.

Respective responsibilities of trustees and auditors

As explained more fully in the statement of trustees’ responsibilities, 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.

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

We have been appointed as auditor under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts.

Scope of the audit of the financial statements

A description of the scope of an audit of financial statements is provided on the FRC’s website at www.frc.org.uk/auditscopeukprivate.

Opinion on financial statements

In our opinion the financial statements: give a true and fair view of the state of the charitable company’s affairs as at 31 March 2017 and of the charitable company’s net income and application of resources, including the income and expenditure, for the year then ended; have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and have been prepared in accordance with the requirements of the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and regulations 6 and 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended).

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 MARCH 2017

The statement of Financial Activities for the year ended 31 March 2017 for the parent charitable company only was a surplus of £222k (2016: £1,858k).

There are no recognised gains or losses other than those disclosed above. All results are derived from continuing activities.

The accompanying notes on pages 23 to 35 form an integral part of the financial statements.

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

STATEMENT OF CASHFLOWS – AS AT 31 MARCH 2017

The accompanying notes on pages 23 to 35 form an integral part of the financial statements.

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 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.

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

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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 on 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.

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 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.

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.

TANGIBLE FIXED ASSETS AND DEPRECIATION

Items or projects with a value exceeding £500, 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 straight-line basis to write off the cost as follows: Leasehold premises: over length of lease All other assets: over four years.

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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.

PENSIONS

Muscular Dystrophy UK offers defined contributions to employees’ pension arrangements. This is to an employee’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.

FUND ACCOUNTING POLICIES

Unrestricted funds are funds received and applied to achieve the general objectives of Muscular Dystrophy UK. Designated funds are unrestricted funds earmarked by the Trustees for particular purposes.

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

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NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 2.

INCOME

Of this income, £31k comes from the Department of Health for the Bridging the Gap project, which ended in 2016/17.

3. EXPENDITURE

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 3.

EXPENDITURE (CONTINUED)

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

‘Support Costs’ comprise the following : 2017 2016 £000 £000 Chief Executive and Human Resources 84 96 Finance and insurance 254 239 Office costs 314 344 Information Technology 160 145 Governance 30 61 Total 842 885 These costs have been allocated across the activities on the basis of expenditure incurred for each of the activities.

‘Access to care’ includes Policy, Communications and training activities. ‘Independent living’ includes advocacy, care, equipment grants and Trailblazers.

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

4. STAFF COSTS (Group and Parent Charity)

2017 2016 £000 £000 Remuneration of Staff Wages and Salaries 2,283 2,121 Social Security Costs 222 199 Pensions 108 102 Total 2,613 2,422

The monthly average number of employees during the period was 78 (2016: 77), of whom there were the following higher-paid employees as detailed below.

Two redundancies were made in the year. The aggregate cost of the redundancy payments was £2,138.

Details of the Key Management Personnel, which consists of the Senior Management Team, can be found on page 40. Their total aggregate salary was £395k (2016: £314k) 2017 2016 No No Earned between the ranges £60,000 to £70,000 1 1 £70,000 to £80,000 2 1 £80,000 to £90,000 - 1 £90,000 to £100,000 1

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NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 4. STAFF COSTS (Group and Parent Charity continued) 2017 2016 No No Number of staff by activity Direct Charitable Expenditure 38 37 Fundraising and Publicity 34 34 Management and Administration 6 6 Total 78 77

Pension Schemes

There were outstanding contributions of £214 (2016: £15,733) at the balance sheet date.

5. GRANT EXPENDITURE

Research Welfare Total Total Grants Grants 2017 2016 £000 £000 £000 £000 Grants awarded in the year 2,811 274 3,085 1,955 Grants cancelled in the year (62) (21) (83) (95) Total 2,749 253 3,002 1,860 With the exception of welfare grants that are paid to individuals, all grants are paid to institutions.

A list of grants to institutions is available from the registered office.

Three institutions were in receipt of material grants (over £75k pa) - Oxford University £212k, Royal Holloway / UCL / University of Newcastle £400k and UCL £205k.

At the balance sheet date, the charity had conditional grant commitments that had not been accrued in the accounts as the criteria relating to payment in subsequent years had not been met, as follows: 2017 2016 £000 £000 Payable between one and five years 3,547 2,134 Reconciliation of grant funding commitments : Research JPT Total 2017 2017 2017 £000 £000 £000 Carrying amount at start of year 1,925 209 2,134 Additions 2,811 274 3,085 Amounts charged in year (1,363) (226) (1,589) Reversed out in year (62) (21) (83)

Carrying amount at end of year 3,311 236 3,547

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 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.

2017 2016 £000 £000 Expiring up to one year 225 235 Expiring between one and five years 851 937 Expiring after more than five years 209 460

7. NET INCOME Net Income is stated after charging 2017 2016 £000 £000 Auditor’s remuneration excluding VAT 21 21 Other Audit services - 2 Depreciation 82 68 Operating lease rentals 217 214

8. TANGIBLE FIXED ASSETS

Group and Parent Charity Leasehold Premises Other Assets Total £000 £000 £000 Cost at 1 April 2016 202 525 727 Disposal (2) (98) (100) Additions 1 26 27 At 31 March 2017 201 453 654

Depreciation 1 April 2016 57 405 462 Disposal (1) (98) (99) Provided for year 20 62 82 At 31 March 2017 76 369 445

Net Book Value At 31 March 2017 125 84 209 At 31 March 2016 145 120 265

All tangible fixed assets are used in the promotion of Muscular Dystrophy UK’s work; none is held for investment. 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.

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NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 9. INVESTMENTS

Group Group Charity Charity 2017 2016 2017 2016 £000 £000 £000 £000 Market Value at 1 April 2016 4,658 4,796 4,658 4,796 Acquisitions 2,476 1,366 2,476 1,366 Sales proceeds (1,465) (1,387) (1,465) (1,387) 5,669 4,775 5,669 4,775 Net Gain / (Loss) on revaluation of Investments 505 (117) 505 (117) Market value at 31 March 2017 6,174 4,658 6,174 4,658 Historical Cost at 31 March 2017 4,972 4,042 4,972 4,042 Spread of Investments The investments of Muscular Dystrophy UK are held as follows: Group Group Charity Charity 2017 2016 2017 2016 £000 £000 £000 £000 Investments listed on a recognised Stock Exchange and Unit Trusts - UK Equities and other 3,513 3,010 3,513 3.010 - UK fixed interest 2,473 1,471 2,473 1,471 5,986 4,481 5,986 4,481

Cash on Deposit awaiting investment 126 115 126 115 Unlisted equities 62 62 62 62 Total 6,174 4,658 6,174 4,658 The unlisted equity investment has been valued at its likely realisable value.

Investment management costs for the year were £22k (2016: £19k) Only two individual investments constituted more than five percent of the total investment portfolio (at market value) as at the year end. These were Lloyds Bank Fixed Interest £938k and Goldman Sachs £1,007k (2016: Places for People Bond £970k).

10.

INCOME FROM INVESTMENTS

Group Group Charity Charity 2017 2016 2017 2016 £000 £000 £000 £000 UK Equities, UK fixed interest and other 204 142 204 142 Short-term Deposit and Bank interest 26 9 26 9 230 151 230 151

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 11.

INVESTMENTS IN SUBSIDIARY UNDERTAKINGS

The accounts of Muscular Dystrophy UK (i.e. ‘charity’ accounts) incorporate the results of the following entity on a line-by-line basis: Joseph Patrick Trust, a separately registered charity number 294475, which makes grants towards welfare equipment. Muscular Dystrophy UK is the sole corporate Trustee. The Trust shares a registered office with Muscular Dystrophy UK. The consolidated accounts of Muscular Dystrophy UK incorporate the results of the Muscular Dystrophy Group (Trading) Limited, 893086, which undertakes trading activities on behalf of the charity and covenants all profits to the charity.

They are both registered at 61A Great Suffolk Street, London, SE1 0BU. Their net assets and results for the year ended 31 March 2017 are summarised below:

Muscular Dystrophy Joseph Patrick Group (Trading) Ltd Trust £000 £000 Fixed Assets - 362 Current Assets 232 190 Current Liabilities (278) (315) Total Net (Liabilities)/Assets (46) 237 Represented by: Total Funds (46) 237

Total income 114 132 Total expenditure (106) (292) Surplus/(Deficit) for the year 8 (160)

Country of Registration England England Number of fully-paid £1 ordinary shares 100 Voting rights owned

by Muscular Dystrophy UK 100% 100%

12. STOCK The stock held in Muscular Dystrophy Group (Trading) Ltd represents new goods available for sale valued at £13k (2016 : £3k).

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NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 13. DEBTORS

Group Group Charity Charity 2017 2016 2017 2016 £000 £000 £000 £000 Trade debtors 27 50 - 27 Amount due from subsidiary undertakings - - 261 289 Prepayments and accrued income 469 433 468 432 Other debtors 8 25 18 34 504 508 747 783 All amounts are due within one year, and all intra group balances are unsecured and do not bear interest.

14. CREDITORS FALLING DUE WITHIN ONE YEAR

Group Group Charity Charity 2017 2016 2017 2016 £000 £000 £000 £000 Accruals for grant payable 3,547 2,134 3,547 2,134 Accruals and Deferred Income 227 296 225 294 Taxation and Social Security 61 70 61 70 Other Creditors 300 332 298 331 4,135 2,832 4,131 2,829

15. CREDITORS FALLING AFTER MORE THAN ONE YEAR

Group Group Charity Charity 2017 2016 2017 2016 £000 £000 £000 £000 Rent-free liability 26 54 26 54

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 16. FUNDS

April 2016 Income Expenditure Investment gains Transfer March 2017

£000 £000 £000 £000 £000 £000 Endowment Funds

Orchid Ball Endowment Fund 366 - (7) 28 - 387 Restricted Funds Provision of care City Bridge Trust 12 37 (38) - - 11 Comic Relief - 40 (18) - - 22 Reaching communities 33 - (33) - - Bridging the Gap - 32 (32) - - Simplyhealth 33 - (33) - - Other care 150 134 (191) - - 93 Joseph Patrick Trust 357 36 (271) 47 - 169 Assistive Technology 109 50 (21) - - 138 Research The Patrick Research Fund 334 - - 29 - 363 Attenborough Fellowship 83 18 (73) - - 28 Q Trust Fellowship 219 17 - - - 236 Walton Fund - 15 - - - 15 Duchenne Research 380 665 (715) - - 330 Ullrich Research 188 150 (116) - - 222 Nemaline Research 139 105 (125) - - 119 Congenital MD - 48 - - - 48 Montague Thompson Coon Charitable Trust 234 - (75) - - 159 Other research 338 1,199 (482) - - 1,055 Total Restricted Funds 2,975 2,546 (2,230) 104 - 3,395

Designated Funds Research 2,500 654 (817) 250 - 2,587 Clinical 500 56 (56) - - 500 Tangible Assets for Charity Use 265 - (56) - - 209 Total Designated Funds 3,265 710 (929) 250 - 3,296

General Fund 1,528 4,419 (4,533) 151 - 1,565

Total Unrestricted Funds 4,793 5,129 (5,462) 401 - 4,861 Total Funds 7,768 7,675 (7,692) 505 - 8,256

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NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 16. FUNDS (continued) Represented by: 2016

Balance Income Expenditure Transfers Balance

1/4/15 31/3/16

£000 £000 £000 £000 £000 Endownment 374 - 8 - 366 Total Restricted Funds 1,765 2,716 1,872 - 2,609 Unrestricted Funds 2,117 1,150 - - 3,265 General Fund 1,825 4,474 4,654 117 1,528 Total Funds 6,081 8,340 6,536 117 7,768

ENDOWMENT FUND T he 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 T he 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 Dystrophy UK into a fund to be applied towards research for a cure for Duchenne muscular dystrophy.

Other funds represent other restricted funds raised for specific research or projects.

UNRESTRICTED FUNDS

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

The designation of balances is as follows: ‘tangible assets for charity use’ represents the amount of unrestricted funds represented by these assets research and clinical designations have been identified as priority areas for spend in the next three years the General Fund is available for the ongoing operations of the charity.

Represented by: 2017 Fixed Investments Net Current Assets Total Assets & LT creditors £000 £000 £000 £000 Endowment Funds - 387 - 387 Restricted Funds - 1,555 1,453 3,008 Designated Funds 209 3,087 - 3,296 Unrestricted Funds - 1,145 420 1,565 Total Funds 209 6,174 1,873 8,256

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2017 UNRESTRICTED FUNDS (continued) Represented by: 2016 Fixed Investments Net Current Assets Total Assets & LT creditors £000 £000 £000 £000 Endowment Funds - 366 - 366 Restricted Funds - 982 1,627 2,609 Designated Funds 265 3,000 - 3,265 Unrestricted Funds - 310 1,218 1,528 Total Funds 265 4,658 2,845 7,768

17. LEGACIES

The charity is entitled to a share in a number of estates which it monitors closely. The following sums have not been reflected in these financial statements in accordance with the accounting policies set out in Note 1. The potential values of these estates to the charity at the balance sheet date are as follows: 2017 2016 £000 £000 Residuary 1,471 1,548 Reversionary 271 354 1,742 1,902 All sums are due to Muscular Dystrophy UK.

18. STATUS OF CHARITY

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 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.

19. RELATED PARTY TRANSACTIONS

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

2017 2016 £000 £000 Donations 32 44 Expenses (5 Trustees : 7 in 2016) 3 3 No Trustee received any remuneration during the year. (2016: £nil)

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Patron, President, Honorary Life Presidents, Vice 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

Sue Barker OBE

Honorary Life Presidents

Lord Walton of Detchant Kt TD MA MD DSc FRCP FMed Sci (deceased April 2016) J Alexander Patrick CBE DL Professor Martin Bobrow CBE FRS FMed Sci

Vice Presidents

Anil Ahir Peter Andrews MBE MC The Hon Michael J Attenborough CBE Sophia Bergqvist Professor Kate Bushby MBChB MSc MD FRCP Jane Byam Shaw Tony Carey Tom Chamberlayne-Macdonald (deceased February 2017) Jeremy Champion Roger Cooke Ian Corner Candida Crewe Charity Crewe Sebastian Crewe Professor Dame Kay E Davies CBE DBE FMED Sci FRS Mark Disney Professor Alan Emery FRCP EDIN FRSE Sir Alex Ferguson CBE Andrew Graham Dr David Hilton-Jones MA MD FRCP FRCPE Christian Hore Tania Hore Christine Jenkins Matthew Kelly Sarah Kelly Simon Knights Charles Manby Nicola Manby Andrew Martin Sir Bert Massie CBE Martin Moore Professor Francesco Muntoni FRCPCH FMed Sci Alan Noble Valerie Patrick Jeremy Pelczer

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

Julian Pritchard Keith Rushton Bill Ronald (appointed November 2016) Sir Sydney Samuelson Jonathan Staniforth Michael Thirkettle Baroness Celia Thomas of Winchester MBE Professor Douglas Turnbull MBBS (Hons) MD PhD FRCP Andrew Weir Guy Weston Professor Matthew Wood

Board of Trustees

Bill Ronald (Chair – retired October 2016) Professor Michael Hanna FRCP MD MRCP BM BCh (Chair – appointed October 2016) Anil Ahir Marcus Brown (Treasurer – appointed September 2016) Phillippa Farrant (retired October 2016) Ian T Gordon Andrew Graham (Treasurer – retired September 2016) David Hastie Sheila Hawkins Louisa Hill (appointed October 2016) Dr Sheonad Macfarlane BSc Med Sci MB ChB Charles Manby (retired December 2016) Dr Amy Jayne McKnight PhD Robert Warner Richard Price Charles Scott (appointed October 2016) Baroness Celia Thomas of Winchester MBE Observer: Professor Veronica van Heyningen CBE FRS FMedSci (retired September 2016) Observer: Professor Charles ffrench-Constant PhD FRCP (appointed October 2016) The Board of Trustees also act as Directors of the Company for the purposes of Company Law.

Committees Finance Committee

Andrew Graham (Chair – retired September 2016) Marcus Brown (Chair – appointed September 2016) Ian T Gordon Alison Hampton Bill Ronald – ex officio (until October 2016) Professor Michael Hanna FRCP MD MRCP BM BCh – ex officio (from October 2016) Ian Mathieson (appointed February 2017) Caroline Williams Charles Scott

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Appeals Board

Charles Manby (Chair – retired December 2016) David Hastie (Chair – appointed December 2016) Marcus Brown Maria Hadjipateras Karen Lewis Tim Lumsden James Pearson Bill Ronald (retired October 2016) Richard Price

Appointments and Remuneration Committee

Professor Michael Hanna FRCP MD MRCP BM BCh (Chair) Ian T Gordon Charles Manby (retired December 2016) Bill Ronald (retired October 2016) Baroness Celia Thomas of Winchester MBE

Medical Research Committee

Professor Veronica van Heyningen CBE FRS FMedSci (Chair – retired September 2016) Professor Charles ffrench-Constant PhD FRCP (appointed October 2016) Professor Thomas Braun MD PhD Professor Baziel van Engelen MD PhD MA Dr Luis Garcia PhD Professor Jane Hewitt PhD (retired September 2016) David Hilton Jones MA MD FRCP FRCPE Professor Markus Ruegg PhD Professor Olivier Pourquie (appointed June 2016) Professor Marco Sandri MD (appointed June 2016) Dr Stephen Sawcer MB ChB PhD Dr Shahragim Tajbakhsh PhD (retired June 2016) Professor Frank Walsh BSc PhD Professor Dominic Wells MA VetMB PhD MRCVS FHEA FS (Deputy Chair) Dr Anna Mayhew PhD (appointed June 2017) Dr Jasper Morrow MB ChB PhD FRACP (appointed June 2017) Professor Thomas Gillingwater MBA PhD (appointed June 2017) Professor Ulrike Schara MD PhD (appointed June 2017)

Services Development Committee

Baroness Celia Thomas of Winchester MBE (Chair) Professor K Bushby MBChB MSc MD FRCP Phillippa Farrant Alastair Fischer (retired June 2016) Sheila Hawkins Professor Deirdre Kelly MD MB BcH BaO Medicine Sue Manning Professor Francesco Muntoni FRCPCH FMed Sci Dr Rosaline Quinlivan BSc (Hons) MBBS DCH FRCPCH FRCP MD Carolyn Young Dr Aleks Radunovic PhD FRCP Tanvi Vyas (appointed December 2016)

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

Scottish Council

Dr Sheonad Macfarlane BSc MedSci MB ChB (Chair) David Davison Connor Colhoun Catherine Gillies Diane Johnstone Eleanor McCaffer (Secretary) Gill Mitan Ritchie Robertson Brian Tolmie (Treasurer) Robert Warner

Northern Ireland Council

Dr Amy Jayne McKnight PhD (Chair– retired April 2016) Claire O’Hanlon (Chair – appointed September 2016) Dr Janet Bailie (Secretary – retired April 2016) Claire Boylan (Secretary – appointed April 2016) Eleanor Brown Graham Cloke (Treasurer – appointed May 2016) Art Connolly Leona Connolly Suzanne Glover Maria Hollywood Geraldine McCollum (retired April 2016) Gerry McCollum (retired April 2016) Jim McKeogh (appointed April 2016) Cindy McKnight (retired April 2016) Barry McKnight (retired April 2016) Barry O’Kane (appointed April 2016) Mairead Scott (appointed April 2016) Frances Sharpe (retired April 2016)

Joseph Patrick Trust Management Committee Alexander Patrick CBE DL (Chair) David Jackson MBE Julian Pritchard Keith Rushton

Joseph Patrick Trust Grants Panel

David Jackson MBE (Chair) Karen Duckmanton Phillippa Farrant (retired October 2016) Jane Field Jane Freebody (appointed December 2016) Katherine Fox James Lee (appointed December 2016) Patricia Lock Julian Pritchard Kirsty Read Robert Warner (appointed December 2016)

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Senior management team and advisors Senior management team

Robert Meadowcroft (Chief Executive) Nic Bungay (Director of Campaigns, Care and Information) Jenny Howard (Director of Finance) Sal Lalji (External Affairs Advisor) Dr Jenny Versnel PhD (Director of Research and Business Innovation) Catherine Woodhead (Director of Development)

Bankers

HSBC 6th Floor 165 Fleet Street London EC4A 2DY The Royal Bank of Scotland 40 Islington High Street London N1 8XB

Auditors

BDO LLP 2 City Place, Beehive Ring Road Gatwick West Sussex RH6 0PA

Solicitors

Russell-Cook Solicitors LLP 2 Putney Hill Putney London SW15 6AB A Lutley Solicitors Springfield Rookery Hill Ashstead Surrey KT21 1HY Investment managers Investec Asset Management 2 Gresham Street London EC2V 7QP Registered office: 61A Great Suffolk Street, London SE1 0BU

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

With gratitude We are extremely grateful to so many people and organisations for their significant support this year: Allergan International Foundation Amrit Tatla Anderson Strathern Andrew Robertson Anne Peterson Association of Property Lenders BGC International L P Bill Ronald British Telecommunications Plc Bruce Wake Charitable Trust Catherine Cookson Charitable Trust CDE Global CeX Charles and Nicola Manby Charles Scott Christine and Robert Ogden Comic Relief Dudley and Geoffrey Cox Charitable Trust Erica Leonard Trust Goldman Sachs Hogan Lovells Ian Corner ING Banking Services Limited J P Moulton Charitable Foundation Jeremy Pelczer John Raymond Tijou Charitable Trust Karen Lewis Keith Rushton Lloyds TSB Foundation for NI Lloyds TSB Foundations London Classified Mackie’s of Scotland Mairi Leitch MAP Nemaline MariaMarina Foundation Martin Hywood Matalan Retail Limited Mayo L. Marriott McBains Cooper Michael and Donna Thirkettle Michele Pucci Mrs Gladys Row Fogo Charitable Trust Natalie Woodcock Natwest Trust Administration Next Plc Oaktree Capital Management

Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

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Paul and Tracy Franklin Payne-Gallwey Charitable Trust Pennies Raymond and Blanche Lawson Charitable Trust Sir Alex Ferguson CBE Smart Group Tennants Consolidated Ltd The 29th May 1961 Charitable Trust The A M Pilkington Charitable Trust The Alice E Wood Charitable Trust The Ann Jane Green Trust The Annandale Charitable Trust The Barbour Foundation The Benham Charitable Settlement The Borrows Charitable Trust The Broughton Charitable Trust The Charles and Elsie Sykes Trust The Charles S. French Charitable Trust The City Bridge Trust The Clapp Family Charitable Trust The Constance Travis Charitable Trust The Cranbury Foundation The D D McPhail Charitable Settlement The Davis-Rubens Charitable Trust The Donald Forrester Trust The D’Oyly Carte Charitable Trust The Eleanor Harvey Charitable Trust The Eveson Charitable Trust The G C Gibson Charitable Trust The G D Herbert Charitable Trust The George A Moore Foundation The Hayward Sanderson Trust The Horniman Children’s Trust The Hospital Saturday Fund The John Booth Charitable Foundation The John Jarrold Trust The Joseph Strong Frazer Trust The Kirby Laing Foundation The Lady Hind Trust The Leach Fourteenth Trust The Lord Belstead Charitable Trust The Lord Faringdon Charitable Trust The Martin Connell Charitable Trust The MEB Charitable Trust The Melville Charitable Trust The Miss J K Stirrup Charity Trust The Misses Barrie Charitable Trust The Northwood Charitable Trust The P F Charitable Trust The Paul Bassham Charitable Trust The R G Hills Charitable Trust The Rayne Foundation

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Muscular Dystrophy UK Annual Report and Financial Statements for the year ended 31 March 2017

The Shanly Foundation The Sir Cliff Richard Charitable Trust The Sir Edward Lewis Foundation The Sir James Knott Trust The Sunrise (Sidmouth) Charitable Trust The Swire Charitable Trust The Sylvia Aitken Charitable Trust The Templeton Goodwill Trust The Woodroffe Benton Foundation Tony and Frances Carey Tony and Monica Moorwood Voluntary Sector Investment Programme We are hugely grateful to our enthusiastic and generous committee members whose support makes our events the best they can be: the Microscope Ball Committee, Sports Quiz Committee, The Q Trust, Pledge Dinner Committee, the Appeal Board and the Town and Gown Committee.

We also value the dedication and commitment of those who fundraise for us through our Branches, Groups and Family Funds. Thank you – your efforts make a huge difference to the fight against muscle-wasting conditions.

We are also particularly grateful to all those who leave us a legacy to support our work to beat muscle-wasting conditions.

Muscular Dystrophy UK relies almost entirely on voluntary donations and legacies to fund our vital work. 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.

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