Annual Review & Accounts Year Ended 31 March 2014

Annual Review & Financial Statements

Annual Review & Financial Statements - Year Ended 31 March 2013

Year Ended 31 March 2014

Multiple System Atrophy Trust Founded by Sarah Matheson

Our vision is a world free of MSA

Contents Foreword

03

Every step of the way

05

Listening to people

06

Supporting people

13

Finding the cause & cure

14

Our research priorities

15

Raising awareness

18

How we fund our work

19

Our people & network

21

General information

23

Report of the Trustees

24

Statement of the Trustees’ responsibilities

28

Independent Auditor’s report

29

Statement of Financial Activities

31

Balance Sheet

32

Accounting policies

33

Notes to the financial statements

34

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Foreword Michael Evans, Chair The end of 2013-14 saw the Trust on the road to becoming an even stronger charity with record increases in membership and income. We are now in a position to fund more research, support more people with MSA and spread the word about the impact of the disease like never before.

Our growth in income has meant that in March 2014 we were able to increase the amount of funding for research to at least £150,000 a year for the foreseeable future.

Having a rare disease such as MSA can be extremely isolating which means it is essential that the Trust is able to reach out to as many people as possible and the Trust appointed a third nurse, Jill Lyons, in January 2014 to help address this.

Katie Heyward’s appointment in August 2012 as our first Head of Fundraising paid dividends with income reaching £651,636 during this financial year, with a substantial increase from charitable trusts to £123,076.

In August 2013 we appointed Louise Trott as Fundraising Officer to support Katie and focus on events and community fundraising.

To help us spread the word about MSA, Franca Tranza joined us at the end of 2013 as part-time Head of Communications.

Since becoming part of the team, Franca has developed the Trust’s first communications strategy to help us increase the profile of MSA across many communications channels, including traditional media and increasingly

social media such as Facebook and Twitter.

March 2013 also saw the Trust’s first Service of Light ceremony which gave many people a time to remember and celebrate the lives of their loved ones. It was a resounding success, and while it was not a fundraising event, raised over £11,000.

Our growth has continued apace and, having listened to the views of our members and taken stock, we have put our first five-year strategic plan in place. This will help guide our future development, ensuring growth is sustainable and measured and you can read more about this throughout this Review.

To help us to meet the needs of our continuing growth, we’ve been looking at how to build our executive management team and, after careful consideration, the Trustee Board decided to bring our finance function in-house and provide a job-share partner to part-time Executive Director, Nickie Roberts. Heather Gladman joined the Trust at the end of December 2013 and is responsible for operations including finance, human resources and fundraising.

Nickie leads on activities which fall under the banner of our Mission – research, communications and support services. They

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Foreword share the role of governance and work closely with the Board on strategic planning.

On a personal note I want to add my own thanks to members and colleagues. I will soon be stepping down as Chair of the Board of Trustees and my fellow Trustee, Professor Clare Fowler, will take over. We are extremely fortunate that someone with such detailed knowledge of the disease and personal experience of treating people with MSA was able and willing to take on the role. I am reassured that I leave the chairmanship in truly excellent hands.

Our fundraising eventers deserve special thanks – they have certainly done us proud.

Their names are too many to list but I am constantly amazed at the activities people undertake on our behalf. You name it and someone out there will do it – open swims, 100 mile cycles, sky dives, bake sales, and marathons. Everyone in the MSA community

is in their debt. Without their support, and that of our donors, we simply couldn’t provide all our services nor fund research.

It has been a huge honour to be Chairman of the Trust. My mum died from MSA and I know only too well the heartache, isolation and frustration MSA can bring. The Trust was there for my family, as it is there for others affected by the disease.

While it has been a momentous year of change for the charity, what has remained fixed is the Trust’s aim to support people who are living with this terrible disease. We hope our work will go some way to ensuring people with MSA, their families and carers will never be alone.

Michael Evans Chair, MSA Trust Board of Trustees March 2013 – June 2014

Professor Clare Fowler

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Every step of the way The MSA Trust’s Vision is a world free of MSA – this is our aspiration and goal. We hope one day to find a cure for this devastating disease.

We are committed to supporting people whose lives are affected by MSA, their carers, family and friends. We do this in many ways, including by providing: • Specialist nurses working within the MSA community.

• A support telephone and email advice service.

• An online MSA local Hub to harness community knowledge and to offer more support at local level.

• Education and support for health and care professionals to help them provide the best possible care and treatment for people with this rare and complex disease.

• A sense of community for people isolated by the complexity and challenges of MSA.

• A network of volunteer-led Support Groups located around the UK.

The facts on MSA: • Multiple system atrophy is a rare neurological disease that leads to premature death.

• Its effect on the individual, their family and carers is devastating as the disease impacts on a person’s mobility and ability to communicate.

• Its cause is currently unknown.

• Symptoms usually start between 50 and 60 years, but can affect people younger and older.

• It is random and indiscriminate and can affect any one of us.

• There is currently no known cure.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Listening to people The Trust is committed to listening to members and supporters face-to-face through Support Groups and our Specialist Nurses as well as through social media feedback and more formal surveys.

We believe this is important, as hearing your thoughts and learning of your experiences helps us to develop our plans to better support you.

Our first five-year strategic plan reflects many of our members’ views - here are our top five goals:

Our Founder Sarah Matheson set up the charity in 1997 to ensure people affected by MSA always had someone to turn to.

We remain committed to listening to the views of our members and supporters to help us develop the Trust

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Listening to people

Goal 1:

Develop a Volunteer Network We will appoint a volunteer coordinator to develop a programme of recruiting individuals who are keen to devote their time to supporting the work of the Trust.

Volunteers will cover three main areas: raising awareness, developing local knowledge and fundraising and will become our “army of supporters�.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Listening to people

Goal 2:

Educate health care professionals

We will continue to extend our reach to the multi-disciplinary team – the health and care professionals responsible for the care of people with MSA – and provide more information on symptom management.

We recruited a third Specialist MSA Nurse to complement the work of our existing nurses in movement disorder clinics and relevant healthcare events.

Our expanded Specialist MSA Nurse team means that we can educate more health professionals about MSA within their work settings.

We are developing a healthcare media plan to help us target health and care professionals with information relevant to their area of work.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Listening to people

Goal 3:

Increase commitment to research

The Trust’s Vision is a world free of MSA and we have pledged a minimum of £150,000 pa for each annual grant round.

We have developed our independent scientific panel to meet the needs of our growing research commitment; as well as experts in the field of MSA research, it also includes two “lay” members.

We will increase our commitment to research by working more collaboratively - for the first time, we will consider research grant applications from overseas as long as there is a link to a UK institution or Principal Investigator.

Internationally renowned neurologist, Professor David Burn, joined our Trustee Board to help the Trust build its research capacity and disseminate findings; he is also the Chair of our scientific advisory panel.

Our income base continues to grow and we are working hard to ensure this continues – research is expensive.

A bespoke appeal to fund research work is planned to coincide with World MSA Awareness Day on 3 October 2014.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Listening to people

Goal 4:

Increased support for carers As part of our new Carers Project, we plan to develop a guide for carers that will focus on their specific needs such as where to find support, accessing practical and emotional support and how to look after their own health needs.

We will pilot a Family and Friends day in a regional city so that people living with MSA and their carers can get together and hear from various health professionals about managing MSA and learn about latest treatments.

A special carers appeal was launched at the end of 2013 to support the Trust’s focus on carers.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Listening to people

Goal 5:

Develop a model for MSA Centres

To contribute to improving NHS services for people with MSA, we hope to create a model for MSA Centres where a specialised team in a shared space will provide leadership, treatment, best practice, research, support, awareness and/or training.

We will be looking at how best to deliver this concept, which may be through a combination of sharing best practice online as well as tapping into existing NHS systems – we’ll be working closely with the professionals who deliver services to make sure our plans are realistic and achievable.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Listening to people

Making it happen: Our ambitious plans means we have to increase our fundraising potential so we can realise as many of our goals as possible.

We have a strong track record of securing funding for our activities, often made possible by the tireless efforts of the many people who run marathons, bake cakes and much more. We have developed our fundraising activities so we are not dependent on any one source of funding and our income is derived from charitable trusts, legacies, individual giving and corporate donations. We want to build our income base further and our fundraisers are working hard supporting people with their individual fundraising as well as continuing to develop relationships with donors and building awareness of the different ways individuals can support our work, such as through leaving a gift in a Will. Our hope is our commitment to building volunteer support in the community will, in time, also prove to have an important impact on our ability to secure vital funding for our work.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Supporting people There has been a concerted drive in the last year to engage more with health professionals. This is important as the care people with MSA receive is often dependant on GPs and nurses having a better understanding of the disease – a more empathetic relationship can also help to ease the sense of isolation felt by many MSA families.

We produced materials designed for health professionals and these are receiving positive feedback. Our MSA Specialist Nurses delivered more teaching sessions and attended more clinics than ever before and we developed plans for the expansion of our education resources.

Our approach is bearing results, and we had 256 health professionals join us in the last year, a 69.5% increase on the previous year.

In 2013-14 overall Trust membership rose by 13% to almost 4,500 people across all membership categories. New members were up 27.8% on the previous year with 993 people joining us. Our nurses were in increasing demand, again with calls and emails to the support line increasing by 21.7% on 2012/13. To cope with this we added to our nurse network, and we were delighted to appoint a third nurse, Jill Lyons, in January 2014.

We are grateful to our volunteer support group leaders who arrange and run meetings to help reduce isolation and share knowledge and experiences. The support group network continues to grow, and our groups met 62 times in 2013-14 with attendance up 26.7% on the year before. New groups were started up in Gloucestershire, Motherwell, Norfolk and Wiltshire.

Autumn 2013 saw a follow-up member survey to the one we conducted in 2010. We are delighted to report that overall satisfaction has increased significantly across all services provided.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Finding the cause & cure Our vision is a world free of MSA. This simple statement is the Trust’s aspiration – we hope one day to find a cure.

We know this goal is close to the hearts of our members – our October 2013 membership survey revealed that over 70% of respondents believed MSA research should be an essential priority for the charity.

We have taken this on board and have made a commitment to spend a minimum of £150,000 each year on research grants, and our fundraisers are working hard to make sure we can meet this pledge.

a UK-based Principal Investigator/institution.

As part of our commitment to increase collaboration, we supported the second UK MSA Research Symposium in London.

This meeting included 14 of the leading experts from around Europe who discussed topics including the essential characteristics of MSA, improving management of the disease and treatments that could target its underlying causes.

To ensure we fund the very best scientific research, in the past year we have developed an enhanced grant review and monitoring process working with an independent scientific advisory panel which includes lay members as well as experts in the field.

Our thanks go to Professor Martin Rosser and Professor Nick Wood who have shared their time and expertise in reviewing grant applications, in recent years.

We have also updated our three year Research Strategy. In line with our aim to fund the best global research, for the first time, we will consider applications from overseas as long as there is a demonstrable link to 14

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Our research priorities 1 Funding research grant projects aimed at: Finding the cause of MSA and improving treatments for people with MSA through drug discovery and translational studies including, for example, the treatment of important symptoms in MSA.

2 Seeking collaborative partnerships with other organisations involved in neurodegenerative research to increase research capacity, share resources and generally raise the profile of the disease.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Our research priorities 3 Encouraging engagement with the pharmaceutical industry, in particular around target identification and drug discovery, working in collaboration with the Trust-funded MSA UK Network. The Network will provide a biobank, enabling sharing of samples amongst the MSA research community and ultimately facilitate the participation of patients in clinical trials.

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Developing interest amongst clinical and nonclinical scientists to undertake MSA research by demonstrating the on-going commitment of the Trust to funding research, and by building links with existing research structures, for example, the National Institute for Health Research, the Dementias and neurodegeneration (DeNDRoN) Specialty, thereby organically growing the MSA scientists and clinicians of the future.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Our research priorities 5 Supporting international scientific collaboration, enabling participation in European initiatives and considering overseas grant applications from researchers with a demonstrable link to a UKbased Principal Investigator or institution.

Professor David Burn chairs the Trust’s independent Scientific Advisory Panel

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Raising awareness People with MSA often tell us how isolating it can feel to have a rare disease that very few people - including health professionals – have heard of.

One of our key objectives is to ease the isolation experienced by people with MSA, their families and carers by raising awareness about the disease- and this is a key message in the Trust’s first communications strategy.

We engage with our members every day through social media like Facebook and Twitter which is proving to be a fast and efficient way to keep our members, and the people they share with, up-to-date with what is happening in the Trust and on MSA in the UK and globally.

We’ve also had success in the media, especially local newspapers, in raising awareness. The individual efforts of our fundraisers have provided hooks with which to catch the interest of journalists. There have been many effective stories, including the 69 year old lady from Surrey who did 18

an open swim for the Trust and an artist who sketched and cycled his way around Scotland.

MSA Awareness Month (March) and MSA Awareness Day (3 October) are annual events which also provide a hook to raise awareness about the disease and, again, there are many examples of innovative ideas to catch the media’s eye - a café in Norfolk, for example, was decked out in orange for the whole of March selling orange-coloured delicacies to raise funds for the Trust and increase awareness. The café ended up on the front page of the local newspaper.

We have a long way to go but each tweet, Facebook post and newspaper article helps us in our journey to raise awareness and tackle isolation.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

How we fund our work The Trust would not be able to support people with MSA and fund research to find the cause and ultimately cure of this terrible disease without the amazing generosity of our donors. We are truly indebted to them, and 2013-14 saw a marked increase in donations.

Our eventers reach the sky to fundraise for the Trust

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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How we fund our work

During MSA Awareness Month (March 2013), Klondyke Garden Centres donated proceeds from Californian Poppy seed packets to the Trust

Jen Dale’s open swim raised over £3000 for the Trust

In May 2013, the Klondyke Garden Centre chain became the Trust’s first official corporate partner, pledging support to enable the expansion of our specialist nurse scheme in Scotland.

The Trust has also received considerable and invaluable support from both individuals and charitable trusts including: Mr and Mrs Andrew Aldridge, Allergan International Foundation, The Anne and John Walters Charitable Trust, Cycle to…, Cantiacorum Foundation, The Childwick Trust, The D’Oyly Carte Charitable Trust, The Eveson Charitable Trust, The February Foundation, The Hedley Foundation, The Helen Hamlyn Trust, Inman Charity Trustees Limited, The Ratcliff Foundation, Sir James Knott Trust, The Sir James Reckitt Charity, The Swire Charitable Trust.

Our inaugural Service of Light event gave our members the opportunity to remember their loved ones at a service at St Paul’s Church in Covent Garden. It was a huge success and similar events will be organised next year in London and in another city.

Raising awareness is a key part of successful fundraising and we launched our new online merchandise shop where members have been able to purchase Trust branded goods.

We thank you.

This year also saw the Trust launch its first ever donor appeal specifically aimed at carers. The appeal was a great success, raising £7,576 from 158 members.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Our people & network MSA Specialist Nurses Katie Rigg (North of England, Scotland and Ireland) Samantha Pavey (East of England) Sir Roger Bannister

Professor CJ Mathias

Patrons Sir Roger Bannister CBE FRCP Professor CJ Mathias DPhil DSc FRCP

Trustees Michael Evans Lady Eileen Strathnaver OBE (Retired: 25 September 2013) Professor David Burn Professor Clare Fowler CBE FRCP Darcy Hare Alexander Loehnis Christopher Marsden Geoffrey Murray Hon Clare Powell Karen Walker Hugh Matheson

MSA Trust Office Nickie Roberts (Executive Director Mission) Heather Gladman (Executive Director Operations) Neil Hunter (Head of Services) Katie Heyward (Head of Fundraising) Franca Tranza (Head of Communications) Louise Trott (Fundraising Officer) Lyn Shaw (Information Officer) Robin Toomey (PA & Office Administrator)

Jill Lyons (West of England and Wales)

Scientific Advisory Panel Dr Nin Bajaj Consultant Neurologist, Queen’s Medical Centre, Nottingham Professor David J Burn (Trustee and Chairman of the Scientific Advisory Panel) Director of Institute for Ageing and Health, and Professor of Movement Disorders Neurology, Newcastle University Professor David Mann Neurodegeneration and Mental Health Researcher, School of Community Based Medicine, University of Manchester Professor Huw Morris Professor of Neurology and Neurogenetics, Royal Free Hospital, London Dr Anette Schrag Reader in Clinical Neurology, University College London Professor Gregor K Wenning Professor Consultant Neurologist, Innsbruck Medical University

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Our people & network Support Group Network Inverurie

Fife

Northumberland Armagh

Cumbria North Yorkshire West Yorkshire

Longford

Southport Warrington

Manchester Derbyshire

Lincolnshire

East Midlands

Shropshire

Limerick

East Yorkshire

Norfolk/Suffolk West Midlands Essex Oxfordshire Wiltshire Surrey Devon

London Kent

Dorset

West Sussex

Cornwall

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

General information Company status

The company is limited by guarantee, exempted from the requirement to use the word “limited� in its title, and registered as a charity.

The company was incorporated on 1 July 2010.

Trustees

Michael Evans (Retired Chair: 18 June 2014) Lady Eileen Strathnaver OBE (Retired: 25 September 2013) Professor David Burn (Appointed: 26 March 2014) Professor Clare Fowler CBE FRCP (Appt.

Chair: 18 June 2014) Karen Walker (Appointed Vice-Chair: 18 June 2014) Darcy Hare Alexander Loehnis Christopher Marsden Hugh Matheson Geoffrey Murray Hon Clare Powell

Company Secretary

Nicola Roberts

Company number

7302036

Registered charity number

0113 7652

Registered address

Southbank House Black Prince Road London SE1 7SJ

Auditors and Accountants

Dixon Wilson 22 Chancery Lane London WC2A 1LS

Bankers

CAF Bank Limited 25 Kings Hill Avenue West Malling Kent ME19 4JQ

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Report of the Trustees The Trustees present their report along with the financial statements of the charity for the period ended 31 March 2014.

The financial statements have been prepared in accordance with the accounting policies set out on page 33 and comply with the charity’s governing document and applicable law.

Our Vision

Governance

A world free of multiple system atrophy (MSA).

The Trust was set up by a Trust Deed on 28 January 1997 as a registered charity number 1062308. In order to develop its services the Trust became a charitable company limited by guarantee, incorporated on 1 July 2010 and registered as a charity under its then new name of MSAT on 27 August 2010. The company was established under a Memorandum of Association which established the objects and powers of the charitable company and is governed by its Articles of Association. In the event of the company being wound up, members are required to contribute an amount not exceeding £1. To capture any funding donated in the charity’s old name of the Sarah Matheson Trust, particularly in the form of a legacy bequest, the Trust’s original charity registration 1062308 is still in force, although will be used only for the above purpose. On 18 December 2013 the Trust was registered as a charity number SC044535 by the Office of the Scottish Charity Regulator (OSCR).

The Trust makes grants for research in accordance with its Objects, in line with its published Research Strategy and through a peer review process.

Our Mission Our Vision is to have a world free of MSA by finding the cause and ultimately a cure for the disease by funding and promoting research.

Until a cure is found, the Trust will do all it can to ensure that anybody whose life is affected by MSA, including families and carers, has access to information and support to guide them, is not alone in their journey. It will strive to enable people with MSA to get the best possible care and quality of life.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Report of the Trustees The Trust’s Objects are to advance and protect the health of the public, in particular by: a. the provision of information and support to those affected by multiple system atrophy (MSA), their families and carers b. educating and informing healthcare professionals on all aspects of MSA c. promoting and sponsoring research into the causes, diagnosis and treatment of MSA d. improving awareness and understanding of MSA e. promoting the extension of the range of support services available to people with MSA, their families and carers, and f. working with other charities which support those affected by MSA or other neurological conditions

Recruitment and appointment of the Trustee Board The directors of the company are also charity Trustees for the purposes of charity law and under the company’s Articles are known as Trustees. The role of Chairman is for a term of three years with the possibility of extending for one further period of three years; as part of the governance review the term of office of Trustees is being considered. All the serving Trustees have had some experience of MSA, or have close friends who did so, and includes a wide range of skills and experience. The Trust advertises on its own website, on its

Facebook page and within the membership magazine for new Trustees, as well as using external agencies.

All members of the Trustee Board give their time voluntarily and receive no benefits from the charity.

The Trustees during the period covered by this Report April 2013 to March 2014 were as follows: Michael Evans (Chair) Professor David Burn Professor Clare Fowler CBE FRCP Darcy Hare Alexander Loehnis Christopher Marsden Hugh Matheson Geoffrey Murray Hon Clare Powell Lady Eileen Strathnaver OBE Karen Walker Changes to the Board during the period of 1 April 2013 to 31 March 2014 were as follows: Lady Eileen Strathnaver OBE (retired as Trustee on 25 September 2013) Professor David Burn (Appointed: 26 March 2014) The Trust is indebted to the contribution all Trustees have made to the ongoing work of the charity.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Report of the Trustees Trustee induction and training The Trust is committed to providing ongoing training for all of its Trustees and a Trustee Development Training Plan is in place to support them in their role. During this period, and as appropriate, the Trustees attended as part of their Trustee Awayday a Trustee training workshop, a building a better rapport with your charity staff seminar, and the UK MSA research and clinical interest symposium plus various nationwide MSA support group meetings.

Risk management The Trustees have assessed the major risk to which the charity is exposed, in particular those related to the operations and finances of the charity, and are satisfied that systems are in place to mitigate its exposure to them.

Financial review The charity received income of £652,000 for the year (2013 - £538,000) which includes £4,000 (2013 - £144,000) from the Sarah Matheson Trust.

Expenditure during the year was £759,000 (2013 - £621,000) of this £252,000 was spent on research and £271,000 was spent on information and support including the MSA specialist nurses.

Research projects can be conducted over several years. As a result, the timing of research grants being taken up by a successful grant applicant may not match or be in the same financial year as the financial year that the grant was approved and recognised in the accounts. Additionally, the 26

nature of setting up a research project (eg, recruitment) may result in delay in the takeup of funds by a successful grant applicant with the result that the payment may not be recorded in the same financial year as the grant is made.

The charity has a strong balance sheet and as a result has been able to commit to further research expenditure and to invest in its strategic plan for the next five years to expand the activities of the charity.

Reserves policy During the year the Trustees, at the same time as developing the Trust’s strategic plan for the next five years, reviewed its reserves policy in line with meeting its strategic goals. Should all new funding cease for any unforeseen reason, the Trustees believe it is prudent to hold a minimum cash balance to cover six months non-grant expenditure, plus any outstanding research grant commitments.

Public benefit The Trustees, having regard to the public benefit guidance published by the Charities Commission, in accordance with Section 17 of the Charities Act 2011, consider that the purpose of activities of the charity satisfy the requirements of the public benefit as set out in Section 4 of the same Act. This report has been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities (revised 2005) and in accordance with the provisions applicable to companies subject to the small companies regime in Part 15 of the Companies Act 2006.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Report of the Trustees Disclosure of information to the Auditors Each Trustee confirms so far as they are aware that there is no relevant audit information which has not been made available to the Charity’s Auditors and that they each have taken all the steps they ought reasonably to have done as the Charity’s Trustees to make themselves aware of any relevant information and to establish that the Charity’s Auditors are aware of the information.

Declaration I declare in my capacity of charity Trustee that: The Trustees have approved the report above and have authorised me to sign it on their behalf.

MICHAEL EVANS Chair of Trustees ...............…….....2014 10/12/

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Statement of Trustees’ responsibilities Year ended 31 March 2014 Trustees’ responsibilities in relation to the financial statements The Trustees are responsible for preparing the Trustees’ Report and the financial statements in accordance with applicable law and regulations.

Company law requires the Trustees to prepare the financial statements for each financial year.

Under that law the trustees 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 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 company and of the profit or loss of the company for that period. In preparing these financial statements, the Trustees are required to: • Select suitable accounting policies and then apply them consistently; • Make judgments and accounting estimates that are reasonable and prudent; • Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the company will continue in business.

The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the company’s transactions and disclose with reasonable accuracy at any time the financial position of the company and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularity.

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MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Independent Auditor’s report Year ended 31 March 2014 Independent Auditor’s unqualified report to the Trustees of the Multiple System Atrophy Trust We have audited the financial statements of Multiple System Atrophy Trust for the year ended 31 March 2014 which comprise the Statement of Financial Activities, the Balance Sheet, the Accounting Policies and the related notes.

The financial reporting framework that has been applied in their preparation is applicable law and the Financial Reporting Standard for Smaller Entities (effective April 2008) (United Kingdom Generally Accepted Accounting Practice applicable to Smaller Entities).

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

Respective responsibilities of Trustees and Auditor As explained more fully in the Trustees’ Responsibilities Statement set out on page 28, 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 Auditing Practices Board’s Ethical Standards for Auditors.

Scope of the audit of the financial statements An audit involves obtaining evidence about the amounts and disclosures in the financial statements sufficient to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or error. This includes an assessment of: whether the accounting policies are appropriate to the Charitable Company’s circumstances and have been consistently applied and adequately disclosed; the reasonableness of significant accounting estimates made by the Trustees; and the overall presentation of the financial statements. In addition, we read all the financial and non-financial information in the Trustees’ Annual Report to identify material inconsistencies with the audited financial statements and to identify any information that is apparently materially incorrect based on, or materially inconsistent with, the knowledge acquired by us in the course of performing the audit. If we become aware of any apparent material misstatements or inconsistencies we consider the implications for our report.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

29

Independent Auditor’s report Year ended 31 March 2014 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 2014 and of its incoming resources and application of resources, including its income and expenditure, for the year then ended; • have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice applicable to Smaller Entities; and • have been prepared in accordance with the requirements of the Companies Act 2006.

Matters on which we are required to report by exception We have nothing to report in respect of the following matters where the Companies Act 2006 requires us to report to you if, in our opinion: • The information given in the Trustees’ Annual Report is inconsistent in any material respect with The financial statements; or • The Charitable Company has not kept adequate accounting records; or • The financial statements are not in agreement with the accounting records and returns; • We have not received all the information and explanations we require for our audit; or • The Trustees were not entitled to prepare the financial statements in accordance with the small Companies regime and take advantage of the small companies exemption in preparing the Trustees’ Annual Report.

Suzanne Rose (Senior Statutory Auditor) For and on behalf of Dixon Wilson, Statutory Auditor 22 Chancery Lane, London WC2A 1LS

...............…………………..2014 11/12/

30

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Statement of Financial Activities (including an income and expenditure account)

Year ended 31 March 2014 Unrestricted income Note fund £ Incoming resources Incoming resources from generated funds Voluntary income Activities for generating funds Investment income

Restricted income Total funds fund 2014 £ £

Total funds 2013 £

279,805 200,724 6,233

146,065 18,809 -

425,870 219,533 6,233

437,058 95,096 5,747

Total incoming resources

2

486,762

164,874

651,636

537,901

Resources expended Cost of generating funds Charitable activities Governance costs

4 5 6

166,155 455,545 69,651

68,058 -

166,155 523,603 69,651

107,722 467,002 45,904

691,351

68,058

759,409

620,628

3

(204,589)

96,816

(107,773)

(82,727)

9

9,077

-

9,077

11,403

Net movement in funds Balance at 31 March 2013

(195,512) 639,630

96,816 20,805

(98,696) 660,435

(71,324) 731,759

Balance at 31 March 2014

444,118

117,621

561,739

660,435

Total resources expended Net incoming/(outgoing) resources Other recognised gains & loses Unrealised gain on revaluation of investments to market value

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

31

Balance Sheet At 31 March 2014 Unrestricted income funds £

Restricted income funds £

Total funds 2014 £

Total funds 2013 £

3,175 100,583

-

3,175 100,583

91,506

103,758

-

103,758

91,506

22,534 1,194 666,024

117,621

22,534 1,194 783,645

49,237 1,179 745,078

689,752

117,621

807,373

795,494

(76,876)

-

(76,876)

(70,389)

Net current assets

612,876

117,621

730,497

725,105

Total assets less current liabilities

716,634

117,621

834,255

816,611

(272,516)

-

(272,516)

(156,176)

Net assets

444,118

117,621

561,739

660,435

Funds Unrestricted income reserve Unrestricted income revaluation reserve Restricted income fund

433,535 10,583 -

117,621

433,535 10,583 117,621

638,124 (1,506) 20,805

444,118

117,621

561,739

660,435

Note Fixed assets Tangible assets Investments at market value

Current assets Debtors Stocks Cash at bank

Creditors: amounts falling due within one year

Creditors: amounts falling due after more than one year

8 9

10 11 12

13

14

These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies regime and in accordance with the Financial Reporting Standards for smaller entities (effective April 2008).

The financial statements on pages 31 to 39 were approved by the Trustees on and were signed on their behalf by:-

9 /12/

2014

PROFESSOR CLARE FOWLER CBE FRCP Chair of Trustees 32

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Accounting policies Year ended 31 March 2014 The financial statements have been prepared in accordance with applicable accounting standards and with the Statement of Recommended Practice (Revised 2005) - Accounting and Reporting by Charities and in accordance with the Financial Reporting Standard from Smaller Entities (effective April 2008). The particular accounting policies adopted are described below.

Basis of accounting The financial statements have been prepared under the historical cost convention modified by the inclusion of fixed asset investments at market value.

Income All income is recognised in the statement of financial activities when the Trust has entitlement to the income and there is reasonable assurance of receipt.

Expenditure Grants payable are recognised in the year in which the Trustees are unconditionally committed to making the grant. Other expenditure is recognised on an accruals basis.

Tangible fixed assets Tangible fixed assets are stated at cost less depreciation.

Investments Investments are included in the balance sheet at their market value. All realised and unrealised gains are taken to the statement of financial activities.

Fund accounting Unrestricted funds are held to cover the charity against the continued financing of activities.

Details of the nature of each fund is set out in note 16. The Restricted fund comprises donations made to fund the cost of employing specialist nurses and research funding.

Stock Stock is valued at the lower of cost and net realisable value.

Leasing Rentals under operating leases are charged to the income and expenditure account on a straight line basis over the term of the lease.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Notes to the financial statements Year ended 31 March 2014 1. Status The company is limited by guarantee and has no share capital

2. Incoming resources Income from activities for generating funds Event income Merchandise

Investment income Interest receivable from UK deposit account Voluntary income Donations under the Gift Aid scheme Legacies & Memoriam donations Other donations

Total incoming resources

Unrestricted income fund £

Restricted income fund £

Total 2014 £

Total 2013 £

189,001 11,723

18,441 368

207,442 12,091

86,795 8,301

200,724

18,809

219,533

95,096

6,233

-

6,233

5,747

33,148 119,959 126,698

10,031 136,034

33,148 129,990 262,732

12,633 177,999 246,426

279,805

146,065

425,870

437,058

486,762

164,874

651,636

537,901

Other donations includes a donation of £3,826 (2013 - £144,301) from the unincorporated charity Autonomic Disorders Association Sarah Matheson Trust. To capture any funding donated in the charity’s old name of the Autonomic Disorders Association Sarah Matheson Trust, particularly in the form of a legacy bequest, the Trust’s original charity registration 1062308 is still in force, although will be used only for the above purpose.

3. Net incoming/(outgoing) resources have been stated after charging: Auditor’s remuneration Deprecation Operating lease costs

34

2014 £

2013 £

500 182 25,851

2,989 18,498

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Notes to the financial statements Year ended 31 March 2014 2014 £

2013 £

Merchandise

6,384

3,377

Events & catering

9,778

1,398

112,709

81,910

Rent

10,340

6,851

Office costs

13,234

6,648

137

263

13,573

7,275

166,155

107,722

4. Cost of generating funds

Salaries

Sundry PR & Marketing

5. Charitable activities Nurses’ salaries & expenses Research Info & patient support

6. Governance costs Accountancy fees Audit fees Professional fees Management fees Salaries Pensions Trustees’ meetings Rent Office costs

Unrestricted income fund £

Restricted income fund £

Total 2014 £

Total 2013 £

62,442 220,899 172,204

36,791 31,267 -

99,233 252,166 172,204

79,486 242,141 145,375

455,545

68,058

523,603

467,002

2014 £

2013 £

3,247 500 6,248 20,147 23,916 1,092 2,430 3,878 8,193

3,905 300 9,795 16,016 729 3,397 3,101 8,661

69,651

45,904

During the year the Trustees did not receive any remuneration or reimbursement of expenses.

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Notes to the financial statements Year ended 31 March 2014 7. Staff costs

2014

2013

5.8

4.0

£

£

216,618

158,311

Employer’s NIC

22,592

14,748

Pensions

13,940

9,752

253,150

182,811

Office equipment £

Patient aids £

Total £

Cost or valuation At 1 April 2013 Additions

6,603 3,357

49,027 -

55,630 3,357

At 31 March 2014

9,960

49,027

58,987

Depreciation At 1 April 2013 Charge for the year

6,603 182

49,027 -

55,630 182

At 31 March 2014

6,785

49,027

55,812

Net book value At 31 March 2014

3,175

-

3,175

At 31 March 2013

-

-

-

The average number of persons employed by the charity during the year was: Office and nurse staff

Gross wages

No employee (including benefits) earned more than £60,000 in the year.

8. Tangible fixed assets

36

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

Notes to the financial statements Year ended 31 March 2014 9. Investments

2014 £

2013 £

91,506

80,103

9,077

11,403

100,583

91,506

Market value At 1 April 2013 Net gain on revaluation At 31 March 2014

Cost Market value 31 March 31 March 2014 2013 £ £ The Trustees’ investments were made up as follows: COIF Charities Investment Fund

30,000

40,660

Charities Property Fund

30,000

20,926

M&G Charifund Inc

30,000

38,997

All of the investments are listed.

90,000

100,583

2014 £

2013 £

2,843 19,691 -

32,838 14,379 2,020

22,534

49,237

11. Stock

2014 £

2013 £

Finished goods: merchandise

1,194

1,179

Restricted income Total funds funds 2014 £ £

Total funds 2013 £

10. Debtors Trade debtors Other debtors Accrued income

12. Cash at bank Cash committed for research grant funding Other cash

Unrestricted income funds £ 297,554 368,470

117,621

297,554 486,091

150,448 594,630

666,024

117,621

783,645

745,078

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

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Notes to the financial statements Year ended 31 March 2014 13. Creditors: amounts falling due within one year Trade creditors Other creditors

14. Creditors: amounts falling due after more than one year Trade creditors

15. Operating lease commitments

2014 £

2013 £

60,458 16,418

2,889

76,876

70,389

2014 £

2013 £

272,516

156,176

2014 £

2013 £

As at 31 March 2013 there were annual commitments under non-cancellable operating leases as follows: Within one year 7,710 9,638 16. Funds Unrestricted Income Fund - comprises the undistributed income of the charity and the Trustees are free to use these resources in accordance with the objects of this charity.

Restricted Income Fund - comprises donations made to fund the cost of employing specialist nurses. The donation in the year represents a payment received near the year end towards the cost of employing an additional nurse.

17. Related party transactions During the year the company received management and book-keeping services amounting to £20,197 (2013 - £10,704) from Pierrepont Estates Management Company Limited, a company in which H P Matheson has a material interest.

The balance owing to Pierrepont Estate Management Company Limited at the year end was £1,772 (2013 - £1,151).

All transactions are undertaken on an arm’s length basis.

The Trust has reached the size where the Trustees considered it appropriate to bring the provision of financial management and book-keeping services in-house. Steps have been put in place to fully achieve this goal by 1 April 2015.

During the year an interest free loan was made to Katie Heyward, an employee of the charity, of £3,556 (2013 - £3,352). The amount owed to the charity at the balance sheet date was £2,667 (2013 - £2,514).

38

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

MSA Trust Annual Review & Financial Statements - Year Ended 31 March 2014 | Company no. 7302036 | Charity no. 1137652

39

Multiple System Atrophy Trust Founded by Sarah Matheson Southbank House Black Prince Road London, SE1 7SJ Telephone: 020 7940 4666 Email: office@msatrust.org.uk Website: www.msatrust.org.uk Follow us on Twitter Follow us on Facebook Registered in England as Charity No. 1137652 Company No. 7302036 The “MSA� voice is stronger the more members we have. Membership is free - please join us.