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2023-12-31-accounts

Annual Report and Consolidated Financial Statements For the year ended 31 December 2023

Message from the Chair

2023 has been a busy year for the Association. We welcomed our new Chief Executive, Tanya Curry who has led the organisation with purpose and gusto. This year has been one of more – more investment in research, more care and support given to people living with or affected by MND, more financial grants given, more fundraising activity and another astonishing Kevin Sinfield CBE challenge.

I am continuously inspired by the dedication and commitment of our staff, volunteers and members working together to deliver the five Promises we made to the MND community. And, in recognition of the importance of collaboration, we have strengthened our relationships with other charities, partners and institutions to increase our reach and continue to raise awareness of MND.

None of this would have been possible without another record-breaking fundraising year with our income nearing £38 million. I want to thank all of our loyal fundraisers, supporters and donors for their incredible and generous support.

At the end of 2023, our rich and diverse community has been one voice behind one vision – a world free from MND.

I hope you enjoy reading about our achievements in 2023 as much as I have.

Dr Usman Khan

Chair, Board of Trustees

2 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

In my 15th year as Royal Patron of the MND Association, I was pleased to attend three very different but equally interesting events, thanking supporters and highlighting the charity’s work. The first engagement was an evening reception with supporters which focused on women who have excelled in sport, hosted by the British Olympic Association.

In the summer, I attended the first MND Association Care Showcase, hosted by the Duke of Buccleuch at Boughton House. This focused on the improvement and development of support for people with MND and I heard more about the work of the Association’s National Care Team and the difference it is making.

Significant developments in technology are also having a positive impact in supporting people in their daily lives, which was highlighted at the Summit of Technology event I attended in July. It will be interesting to see how future collaboration with partners and businesses with complementary skills and expertise continues to drive this work.

I am also encouraged to see collaboration between charities with similar goals. As in so many walks of life, working together brings many benefits. In our case, of course, these benefits will be felt by people with, and affected by, MND.

I congratulate you all on your commitment and dedication to the MND community and wish you all every success for the year ahead.

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 3

Contents

Trustees’ Report (including the Strategic Report) 5
i.
Objectives and activities		 5
ii. Achievements and performance in 2023 5
iii. Future plans and priorities 8
iv. Fundraising governance priorities 8
v. Financial review 9
vi. Principal risks and uncertainties 10
Structure, Governance and Management 12
Statement of Trustees’ Responsibilities and Corporate Governance 15
Organisational Information 16
Independent Auditor’s Report 17
Statement of Financial Activities 19
Consolidated Balance Sheet 20
Consolidated Cash Flow Statement 21
Statement of Accounting Policies 22
Notes to Financial Statements 25

4 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Trustees’ Report

The trustees are pleased to submit their Report on the Charity’s activities together with the Financial Statements for the year ended 31 December 2023, which have been prepared in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102), the 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) – (2nd Edition, effective 1 January 2019) and the Companies Act 2006.

About MND

Motor neurone disease (MND) is a rapidly progressing neurological disease that affects the brain and spinal cord. More than 5,000 people in the UK are living with MND at any one time and the lifetime risk of being diagnosed with MND is around one in 300.

and its associated conditions and causes, and works towards their prevention and cure and to publish and disseminate the useful results for the benefit of the public.

Public benefit

The trustees consider that the Association’s charitable objects meet the ‘purposes test’ for public benefit, as set out in the Charities Act 2011, and that the goals, progress and achievements in this report demonstrate the public benefit deriving from Association activities.

The trustees refer to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in planning its future activities. In particular, the trustees consider how planned activities will contribute to the aims and objectives that have been set.

As symptoms progress, MND can leave people locked inside a failing body, unable to move, talk, swallow or even breathe.

Every day, six people are diagnosed with MND. Another six people die.

There are currently no effective treatments. There is no cure.

i) Objectives and activities

About us

The MND Association (the Association) was founded in 1979 by a group of volunteers, all with their own personal experience of MND.

Over the years, the Association has grown into the vibrant community we know today, made up of members, volunteers, campaigners, supporters and staff from across England, Wales and Northern Ireland.

As well as being the biggest charitable funder of MND research in the UK, the Association focuses on improving access to care, providing support, and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland.

Our community is united behind one clear vision – a world free from MND .

Our charitable objects as stated in our Articles of Association

The Association exists for the relief of persons who are, or who are suspected of being, affected by motor neurone disease and associated conditions (the beneficiaries) by seeking to ensure that such persons, their carers and families receive the help and assistance as is calculated to relieve their need.

The Association commissions, undertakes, promotes, monitors and manages research into all aspects of motor neurone disease

ii) Achievements and performance in 2023

This year, the incredible support we receive from our supporters and donors has enabled us to take advantage of many new opportunities, particularly when it comes to campaigning for better provision and raising awareness of MND and the funding of new research which we believe will pave the way for new treatments and the promise of a cure.

We have also taken the opportunity to look closely at the services we offer, working collaboratively with people living with MND, their families and carers to ensure the work we do delivers the right support at the right time.

Our Promise: We won’t rest until MND is treatable and ultimately curable

The MND Association is at the forefront of the global fight against MND, as a visionary, a trusted partner and a leading authority on MND research for more than 40 years.

At the end of December 2023, the value of the MND Association’s research portfolio had grown to a record commitment of £20.7 million, funding 109 grants. These grants are awarded through a competitive process. Only those of the highest scientific merit and greatest relevance, with the greatest potential for achieving our vision of a world free from MND are selected.

Continued, targeted investment in MND research over many decades – alongside the enduring dedication of our supporters – has paved the way for significant progress in facilitating new partnerships this year, with a focus on emerging precision medicine and the pioneering use of Artificial Intelligence (AI) which is being used to accelerate the mining of genetic material to help identify new drug targets.

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The progression of research means new opportunities in the field of emerging treatments. We continue to work collaboratively with MND Scotland and My Name’5 Doddie Foundation and other experts from the wider MND community, with a focus on people with MND gaining equitable and timely access to effective, proven treatments. Throughout the year, together, we have continually monitored the national and international research landscape of potential treatments that are currently involved in clinical trials while engaging with regulators, healthcare providers and Government agencies to ensure an efficient response. People living with MND have remained central to the approach we have taken to the regulatory and approval process challenges, sharing their views and opinions to ensure the Association’s work remains fully informed.

The extraordinary support of the Association’s loyal supporters, fundraisers and donors has ignited revolutionary new research projects which aim to accelerate the search for effective treatments for MND.

Alongside our partners at LifeArc and My Name’5 Doddie Foundation, the MND Association jointly awarded £1 million to researchers at University College London (UCL) and £0.5 million to researchers at the University of Newcastle, to progress research into potential cutting-edge therapies for MND, through the £1.5 million MND Translational Research Fund.

The Association also committed £0.5 million to MND-SMART, the UK’s largest MND clinical drug trial which is testing a series of drugs that that have already been approved as treatments for other diseases. More than 500 participants have been recruited to this ground-breaking trial.

A project, led by Professor Guillaume Hautbergue at the University of Sheffield, supported by joint funding from the MND Association and LifeArc, received a further £5 million investment from the business community to take the research through the next drug development stages. The researchers have uncovered a potential new method of preventing nerve cell death in the most common genetic form of MND. It is hoped these findings will lead to the development of a therapy for those with the C9orf72 gene, which currently affects around 5-10% of people with MND.

With collaboration very much at its heart, the Association was at the launch of the UK MND Research Institute at King’s College London in November. The Institute has been borne out of a shared vision of people with MND, researchers and MND charities to provide a virtual hub for researchers and clinicians to share ideas, knowledge and expertise in order to create a springboard towards new treatments and the promise of a cure.

Elsewhere, the Association has been a conduit for conversation and change. In July, our second EnCouRage UK two-day event focused on showcasing, supporting and developing early career researchers who represent the future of MND research.

While at the end of the year, we welcomed 1,300 people from 48 countries to our 34th International Symposium on ALS / MND. Hosted in Basel, Switzerland, our first in-person, overseas event since 2019 gave delegates the chance to share the latest ideas and discoveries, and develop partnerships and collaborations.

Further investment in the future has been made available through a pre-fellowship programme, funded in partnership with MND

Scotland, with the aim of training future leaders. In 2023, three pre-fellowships were offered to researchers who will investigate a wide range of topics, from developing potential drugs to clarifying possible sub-groups of MND.

Our Promise: We won’t rest until everyone gets the care they need when they need it

Empowering people with MND to live as independently as possible for as long as possible has been a key focus of our work throughout 2023.

We recognise there are still some places across England, Wales and Northern Ireland where people living with MND cannot access the care and support they need. We have listened and taken prompt action to identify those areas with the greatest need, developing and nurturing partnerships with the NHS to improve the range of services available to people living with MND, their carers, and their families.

In the West Midlands, the Association funded a new MND Care Co-ordinator post at the Birmingham MND Care Centre to improve its capacity to deliver and improve care for people with MND living across the region. We awarded extra funding to six services in Northern Ireland, Newcastle, Middlesbrough, Nottingham, Derby and Oxford to provide targeted additional resources and we are also funding a number of new Community Specialist posts taking us into the heart of communities.

In addition, we have reviewed the guideline on MND produced by the National Institute for Care Excellence (NICE) and laid out our recommendations for amendments to the current guidance, which will empower health and social care professionals to provide the very best care possible.

In June, the Association held its annual Care Centre and Network Day, the first in-person event to be held since 2019, with the theme Partnerships for Success – The Way Forward for MND Care . The event provided a unique opportunity for directors and co-ordinators from 22 Association-funded Care Centres and Networks to come together to learn, share experiences and focus on improving care for people living with MND.

The MND Association’s Wheelchair Support Service provided more than £102,000 in support grants, enabling 136 people with MND to access wheelchair accessories such as powerpacks, risers, attendant controls and powered elevated leg rests. We are grateful to The Wolfson Foundation which generously donated £75,000 to the MND Association to enable us to continue this life-changing work.

Working alongside our partners at national children’s charity Barnardo’s, we have cut the time it takes for children to access professional support, when a family member is diagnosed with MND, from 12 to 18 months to no more than seven days.

As well as providing 289 counselling sessions during the year, in January, the Children and Young People’s team, together with the North Lancashire and South Cumbria support group, organised a family fun day at Bendrigg Lodge in Kendal, providing an opportunity for families affected by MND to meet, share quality time together and create powerful, lasting memories.

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Our Promise: We won’t rest until every day with MND counts

People living with MND remain firmly at the heart of everything we do and through the collective power of our community and our partnerships, we are developing new ways to provide support.

Our work with technology giants including Rolls-Royce and Google took centre stage at a showcase summit of technology in July attended by the Association’s Royal Patron, HRH The Princess Royal. The Next Gen Think Tank’s revolutionary projects include the award-winning, voice-banking e-book I Will Always Be Me, Project Relate, Quips and Mind’s Eye , an art app which unlocks the potential of AI to enable people living with MND to embrace their creativity.

As well as developing access to emerging technology and high quality, multidisciplinary care, the MND Association has offered practical support in the form of grants to individuals which totalled in excess of £2.2 million this year. Thanks to the incredible generosity of our supporters, the Association has been able to ease the burden MND places on those affected, particularly with the challenges faced by many through the cost of living crisis. Throughout the year our dedicated Welfare Benefits Service has provided information and support to people living with MND who may be eligible for additional state benefits and support. The service identified £3.6 million worth of benefits which could be claimed by 1,037 people living with MND.

Working alongside 600 people from across our community, we have taken the opportunity to evaluate our support grants programme. Overall, the response suggested it is working well, with many people saying grants have helped them to feel supported and allowed them to make special memories. In the year ahead, we will raise awareness of the programme, improve guidance about the application process and maximise partnership opportunities to ensure people living with MND are able to benefit from as much support as possible.

In communities across England, Wales and Northern Ireland our amazing volunteers continue to offer a network of one-to-one support to people living with MND when it is needed most.

Through regular phone calls, emails, personal visits and texts, our 357 Association visitors (AVs) and co-ordinators were on hand to offer advice and guidance, while our 87 branches and groups provided a safe space and local point of contact for anyone in need of friendship and support.

Our Promise: We won’t rest until you are heard

We maximise every opportunity to raise awareness of MND and amplify the voices of people affected by MND to bring the reality of the disease to life for millions of people, inspiring many to support us in their own unique way.

In 2023, we were privileged to work alongside the creative teams of two iconic British television programmes – BBC’s Casualty and ITV’s Coronation Street - to develop prominent storylines about characters living with MND. Casualty sensitively told the story of someone who was living with MND and the challenges they faced while viewers of Coronation Street watched character

Paul Foreman, played by Peter Ash, come to terms with his diagnosis in June.

With the eyes of the nation firmly upon MND, the Association seized the opportunity to create and develop an integrated campaign to raise further awareness of MND. This campaign will be delivered throughout 2024.

The enduring power of the friendship between former Leeds Rhinos rugby players Rob Burrow CBE and Kevin Sinfield CBE continues to inspire people. Some 15,000 runners – including more than 2,300 running on behalf of the MND Association - took part in the inaugural Rob Burrow Leeds Marathon and Half Marathon in May, collectively raising £1.76 million. In December, Kevin undertook his fourth challenge, 7 in 7 in 7 which saw him run seven ultra marathons in seven cities in just seven days, an extraordinary accomplishment which raised £460,000 for the Association, secured significant coverage on BBC’s Breakfast and inspired new people to support the Association, for which we are extremely grateful.

This heightened awareness has given the Association a springboard on which to launch campaigns and open robust conversations with those in authority to help bring about meaningful change.

In January, our report, The provision of care for people living with motor neurone disease in Northern Ireland , shone the spotlight on the lack of services available. The Association called for the development of a Northern Ireland MND Regional Care Network to provide multidisciplinary care, support for unpaid family carers and improved access to housing adaptations.

The Association’s first Act to Adapt Action Week took place in April, raising awareness of the importance of home adaptations. Alex Herd, KT Wong and Sam Hayden-Harler all shared their very personal experiences on our social media channels amplifying this crucial message and driving forward our campaign.

Ensuring carers have the support they need has been the focus of a new phase in our Support MND Carers campaign. We engaged with delegates at the Local Government Association Conference in July, raising awareness among councillors and local authority staff.

Nationally, Parliamentarians, researchers, campaigners and people affected by MND gathered in the House of Lords to mark 20 years of the All-Party Parliamentary Group (APPG) on MND, which meets regularly to discuss issues affecting people living with MND and raise awareness at the very highest level.

Parliament buildings across England, Wales and Northern Ireland were the backdrop for events coinciding with Global MND Awareness Day in June. Over three consecutive days, our teams raised awareness of MND among Parliamentarians and decisionmakers and empowered them to make a difference.

Throughout the year we have been incredibly grateful to the many people living with MND who have willingly shared their stories to inform much of the Association’s work. We are honoured to have the continued support of our Royal Patron, HRH The Princess Royal, our patrons – including Rob Burrow CBE and Kevin Sinfield CBE – our ambassadors and supporters, who do so much.

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Our Promise: We won’t rest until no one faces MND alone

Regardless of background, gender, faith or sexual orientation, MND is unrelenting and the MND Association offers help and support to all.

Breaking down any barriers which may stop people from accessing that vital support is crucial, and this year our focus has centred around additional help for anyone for whom English is not their first language, while building strong relationships within all communities.

At a recent event, non-English speakers were matched with staff or volunteers with compatible language skills. They were invited to join a telephone call where staff and volunteers could gain an understanding of their individual needs, and explain what support is available from the Association including care information leaflets in their own language. Through our Diversity Equity Ethnic Minority (DEEM) Network group, we trialled language specific support groups, providing peer support to people in their preferred language. The first of these was aimed at Hindi speaking people living with MND and their families.

In North West Wales, widely considered the heartland of the Welsh-speaking nation, our North West Wales Group funded two bilingual support meetings, offering a place where people affected by MND could come together in a relaxed, informal environment and chat in both Welsh and English. Being able to speak freely in a chosen language provides both reassurance and comfort, and boosts an important emotional connection.

In July, West London and Middlesex Branch members approached the West London Queer Project, to raise awareness of MND. This inspired an event to mark the start of Pride Month with a sponsored 10km Thames Park Walk in aid of the West London and Middlesex Branch, raising £2,158. People living with and affected by MND, branch members, volunteers and staff also joined tens of thousands of LGBTQ+ people and allies to support Manchester Pride.

Meanwhile, a Veterans Support Group was launched specifically for service personnel affected by MND to help reduce loneliness. The forum gives them space to relive their former active lives with like-minded people. Two further network groups – EMBRACE for members of the Black Asian and Minority Ethnic community and PRIDE for the LGBTQIA+ community have been created for staff, volunteers and people living with MND.

While we have taken important steps forward, we understand there is still much more to do. The Association has already started a review around the accessibility and inclusivity of all our public facing products and services and we were delighted to move to the next level of the Confident-Employer scheme, in recognition of our practical and awareness raising work around disability.

Remembering

All those members of the MND community who died from MND this year. As we remember their courage and their contribution to the work of the Association, they will continue to inspire our fight against MND and remind us of the need to do everything we can to support those living with the disease and those closest to them.

iii) Future plans and priorities

The strength in our financial position will ensure we can continue with the work needed to progress our fight against MND. As we enter a period in which we will review our future strategy to ensure it best supports the needs of people with and affected by MND, we do so knowing we have resources available to make a real difference to our community.

The recent advancements in research, leading to real hope for people with MND, must continue. We now have £9.4 million allocated in our designated reserves to support future activity with the UK MND Research Institute; progress more translational research; support the MND Smart programme; and to help with genetic testing and counselling. Partnership funding with Government and other charities, including LifeArc, will continue to help the development of the UK MND Research Institute. This is in addition to the Association’s existing portfolio of research grants which exceeded £20 million in value at the end of 2023.

Our success in 2023 has also given trustees the opportunity to allocate £5 million of our surplus to an exciting new five year initiative which will see more than 20 research nurses introduced into our Care Centres and Networks. These specialist roles will form the cornerstone of ambitious plans to ensure that, in the future, everyone diagnosed with MND will have the support and opportunity to take part in research and clinical trials as part of their holistic care.

Our vital work in the area of access to emerging treatments will continue, both through our own channels and in collaboration with others, most importantly people with MND, who are helping inform our direction while also sharing their compelling stories to make the strongest case.

Our My MND My Needs survey was our most comprehensive survey of people with MND. Already the results are informing our thinking as we work to develop future services and partnerships. We look forward to sharing more about this work and the drive for improvement over the coming year.

To learn more about our commitment to the MND community and our priorities, or to get involved, visit www.mndassociation. org/MNDPromises

iv) Fundraising governance priorities

We would like to thank

Everyone who is living with or affected by MND and all those who generously support our work, either by volunteering, campaigning, raising or donating money, or by sharing their personal experiences to help us raise awareness and funds. They inspire us every day.

We have a diverse portfolio of fundraising activities including raising funds from individuals, trusts and foundations, companies, events, local communities and legacies. We approach our supporters via direct mail, email, telephone, online and directly at events, and manage this fundraising both centrally and locally through our branches and groups.

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We comply with current regulations and best practice set out by regulatory and professional membership bodies including the Fundraising Regulator, the Institute of Fundraising, the Gambling Commission and the Advertising Standards Authority.

We are registered with the Fundraising Regulator and are committed to the Fundraising Preference Service, honouring any requests from the public to end contact with us. We fundraise in line with the Code of Fundraising Practice and adhere to data protection law. We are committed to ensuring that we are completely open and transparent about our fundraising and spending. As members of the Fundraising Regulator’s self-regulatory scheme, we comply with its principles in all our fundraising:

written agreement to ensure their activities are not harmful to the Association. Trustees regularly review the fundraising strategy and are made aware of any significant new activities and/or contracts where values need to be carefully aligned.

We received 18 complaints about our fundraising activity in 2023. All were promptly resolved without the need for escalation to the Fundraising Regulator. Complaints are taken very seriously and reviewed quarterly by the Board of Trustees. There is a complaints policy, available on our website, which forms the basis for the training of all fundraising staff.

All fundraisers at the MND Association are guided in how to protect vulnerable people including how to recognise a person in vulnerable circumstances. All our direct mail, emails and thank you letters contain clear instructions as to how a supporter can easily opt out of receiving further communications from the charity should they choose to do so.

Due to the nature of delivering fundraising across multiple sites, we are aware that the potential for breaches of fundraising code of practice and data protection compliance exist. We manage and minimise these risks through training and inductions for new starters and for our branches and groups; through quality checks and audits, and through our compliance policies.

As the MND Association, we acknowledge that the engagement of third parties can help us raise funds, as well as improve efficiency and reduce costs. We require that any third party we work with complies with data protection legislation as set out in the Code of Fundraising Practice including the requirements of the telephone, mailing, e-mailing and fundraising preference services.

We follow a robust procurement process when recruiting third parties to work on our behalf, making sure we apply appropriate due diligence and contracts for this activity. We work closely with these third parties, regularly reviewing their activity against performance targets and the Fundraising Code of Practice to ensure delivery of the best value for money for the charity and its supporters.

When we benefit from commercial companies raising funds on our behalf through the sale of products, we operate within a

v) Financial review

The MND Association is a company limited by guarantee and is registered in England and Wales. These financial statements are for the group which comprises both the Association and its wholly owned trading company Motor Neurone Disease (Sales) Ltd. The results for the year are set out in the Consolidated Statement of Financial Activities, formatted in accordance with the Accounting and Reporting by Charities: Statement of Recommended Practice (SORP).

Financial performance

2023 was an incredibly successful year for fundraising at the Association, with total income reaching almost £38 million in the 12 month period for the first time ever. This compares with £30 million in 2022.

The increased focus on MND in the media and the high profile fundraising events that took place contributed to a record year. All areas of fundraising had a strong year, most notably legacy donations which accounted for 27% of the income received.

£20.4 million was raised and donated by our incredible supporters and a record £3 million was raised by our branches and groups.

Sources of income

ources of inc ome 11%
8%
(£) million
Fundraising £20.4 Sources of
Legacies £10.4 income
Branches and Groups £3.0 27% 54%
Earned income £4.1
TOTAL INCOME £37.9

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How we spent the money raised

(£) million
Care £8.0
Research £6.8
Campaigning £2.3
Volunteer development £0.8
Fundraising £5.0
Operational Support Costs £3.9
TOTAL COSTS £26.8

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14%
30%
19% Money raised
3%
9% 25%
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We are tremendously grateful for their commitment and continued support.

£10.4 million was donated in 2023 in the form of legacy gifts which continue to make such a huge difference to the work we do. We are enormously grateful to the people who choose to remember the work of the Association in their Wills.

For every pound spent directly generating fundraising and legacy income, £6.80 was received.

Our expenditure year-on-year increased by £4million. This increase reflected increased spend on our core activities as the Association grew to meet the needs of our community. The biggest uplift was in care expenditure which was almost £1.2 million higher as we offered increased grant support, most notably through our emergency grant. We exceeded all our planned commitments to our care grants programme to ensure that people affected by MND continued to receive critical financial support during the cost of living crisis.

Campaigning costs also rose £0.8m as we built on the Association’s heightened awareness through an integrated campaign and focussed on developing research outcomes through the creation of an access to treatments working group.

A record year for income also saw fundraising costs rise proportionately in line with income as event costs, transaction fees and merchandise costs all increased.

Despite the increase in costs, the incredibly strong income performance led the Association to a net surplus of £11.1 million. The Board of Trustees has agreed to designate £5 million of this surplus to support our research nurse initiative which will bring much needed support to our MND Care Centres and Networks. More details of this initiative can be found in the Future Plans and Priorities section.

Despite our extremely positive fundraising success over the last two years, we need to maintain the momentum to support our growing care, research and campaigning work which will cost at least £30 million a year, and allow us to continue to strive towards our mission of a world free from MND.

vi) Principal risks and uncertainties

Risk management

The trustees acknowledge their responsibility for the Association’s systems of internal control and risk management and recognise that such a system is designed to actively manage and minimise the risk of failure to achieve the Association’s objectives. The Board delegates some appropriate financial powers to the Finance and Audit Committee as detailed in the Scheme of Delegation.

The Association has a cautious risk appetite across all its principal risks. The trustees review the key risk indicators for each principal risk area on a regular basis through the delegated Committees. Trustees monitor that appropriate action is being taken where risk does not align with appetite.

There is a comprehensive organisation risk register for the Association that is reviewed and signed off at each Board meeting. In addition, risk registers are held for major project activities and managed through formal Project Boards sponsored by an executive director and usually with trustee representation. The trustees are satisfied that all significant strategic and operational risks have been identified, reviewed and actions established to manage and mitigate those risks.

The following major categories of risk are relevant to the Association:

Reputational risk

Retaining the Association’s reputation is paramount. Due to the diverse nature of our activities this risk relates to several areas including our extensive research programme (for example, our policies on the use of animals and embryonic stem cells in research), the provision of care through our MND Care Centres and Networks, the support provided by our Association visitor network, and the extensive activities of more than 13,000 volunteers – which includes those in our campaigns network –

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across England, Wales and Northern Ireland. Controls and policies relating to all our activities focus on reputational impacts and these are monitored regularly for compliance.

Financial risk

While the Association had an incredibly strong year for income in 2023, we remain very aware of the risk to future income as household incomes are impacted by significant costs of utilities, inflation and stubbornly high interest rates. The impact on the Association could lead to reduced income generation at the same time as the need for further financial support grows from our community. To mitigate this risk, the Association undertakes weekly income and core expenditure reporting so that we can identify and react to any financial pressures which we will manage tightly using our reserves.

While we remain cautious about the financial position in 2024, the robust performance in 2023 has significantly reduced our financial risk and means that the Association will begin the year in a much stronger position than anticipated. The strong financial position has enabled the auditors to confirm that the Association remains a going concern.

External environment risk

The Association supports people living with MND across England, Wales and Northern Ireland. Our primary external environment concern relates to the services provided to people living with MND. These can be impacted by structural changes in the NHS, the constraints on health services, local authority service provision and financial support budgets. These have led to geographical variation in service availability. To mitigate this risk, we actively campaign throughout the three nations to ensure that the delivery of care for people living with MND is provided by the appropriate agency, in the right place and at the right time.

Compliance risk

The Association must comply with a range of legal and regulatory requirements including charity law, data protection, fundraising standards, health and safety and safeguarding. To mitigate these risks the Association has robust and embedded processes and policies, which are complemented by regular and rigorous review at both delegated committee and, where appropriate, Board meetings.

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Structure, Governance and Management

Structure

The Association was originally formed on 6 October 1979 and was incorporated as a company limited by membership guarantee in 1986. The Association is governed by its Articles of Association and in the event of it being wound up, every member is liable for an amount not exceeding £1 to facilitate the payment of the debts and liabilities of the Association. At 31 December 2023, there were 12,231 members.

Governance

All elected and co-opted trustees are provided with a comprehensive induction to the Association, which includes an overview of the organisational strategy and current priorities, together with briefings on the roles and duties of trustees. They receive subsequent development and training through internal coaching and external providers. The Board maintains an updated skills audit against a defined set of skills and this enables it to identify gaps and plan for future recruitment. The Board seeks to maintain and improve its governance arrangements and uses the Charity Governance Code to benchmark its structure and processes against the code’s recommended practices.

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Board
of Trustees
Committees
Executive
and
Leadership
Advisory
Team
Panels
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Our governance structure is designed to ensure that:

Committees of the Board

A number of committees and panels advise the Board on issues relevant to the aims, objectives and good governance of the Association. There are formal terms of reference, minimum skill sets and a required number of trustees for each committee, which are regularly reviewed by the Governance Committee before Board approval. Minutes from each committee are supplied to the full Board.

Care Services and Research Committee

This committee reviews all aspects of the Association’s work relating to improving care and providing support for people with MND, their carers and families. It oversees the strategy, planning and monitoring of the Association’s research work with external partners, commitments to UK MND Research Institute and in a clinical research capacity It reviews risk and approves grant funding to support the work of MND Care Centres and Networks, up to an agreed limit, with grants above that limit being approved by the Board.

Engagement and Fundraising Committee

This committee reviews strategic activities, policy, and effectiveness relating to the Association’s engagement and fundraising activity work. This includes all aspects of fundraising development and strategy, campaigns and policy and public affairs work, the marketing and communication work and Access to Treatment work.

The Board of Trustees

Finance and Audit Committee

The Board (members of which are directors under company law) is the governing body of the Motor Neurone Disease Association and ordinarily meets in formal session four times a year.

The Articles of Association provide a degree of flexibility for changes to be made to the composition of the Board, subject to there always being a majority of elected trustees over co-opted trustees and there being no more than ten elected trustees, and the Board reviews its composition against these requirements on an annual basis.

This committee provides stewardship of all financial aspects of the charity’s work, including the money raised from activities of the Association. The Committee oversees the digital and technology work of the Association, looking at how data and digital can drive innovation.

The committee scrutinises and evaluates the annual budget prior to Board approval. It ensures that the appropriate financial controls and regulatory requirements are adhered to and advises the

12 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Board accordingly. The committee also recommends the annual pay award for all employees (excluding the Executive Leadership Team and CEO), to the Board for approval.

Governance Committee

This committee ensures that the Association can achieve its charitable aims and strategic priorities by undertaking regular reviews of its governance structures and procedures. The committee also monitors compliance within the Association and ensures that high standards of governance are maintained and risks, where possible, are mitigated.

People, Culture and Inclusion Committee

This committee reviews all aspect of the charity’s work in relation to employees and volunteers looking at their recruitment and retention and their experience of engaging with the Association. The committee also oversees safeguarding responsibilities of the charity and ensures monitoring of the associated risks. It also oversees the diversity and inclusion of the charity, making sure that all employees and volunteers operate in a safe and welcoming place.

Honorary Officer Group

Consisting of the Chairs of Committees, the Honorary Officer Group support of the Chair of the Board of Trustees and the CEO in the governance of the Association. The group can also make urgent, essential decisions on behalf of the Board of Trustees when matters arise that require quick decisions.

Remuneration Committee

This committee is responsible for the annual review of the salary and other benefits of the Chief Executive and oversees the remuneration packages of members of the Executive Leadership Team.

Biomedical and Healthcare Research Advisory Panels

These panels assess applications for funding for biomedical and healthcare research in accordance with guidelines from the Association of Medical Research Charities (AMRC) and in line with the Association’s research strategy. They also monitor the progress of our research grants to ensure the research being conducted is in agreement with the terms of the funding. Those proposals meeting the criteria are then scored, prioritised and recommended to the Board for approval.

Branches, groups and affiliates

At 31 December 2023, the Association had 87 branches and groups and two affiliates (based in Jersey and the Isle of Man). Each branch and group has agreed to abide by our branch and group charter which sets out the parameters of the powers delegated to them by the Board.

Branches and groups, whose financial results are included in these statements, are governed by the Board. The two affiliates are excluded from the consolidation as they are not part of the Association.

Branches and groups provide unique support to people affected by MND at a local level and also fundraise and campaign on their behalf. They raise and spend money locally on support grants, in line with guidelines which are reviewed annually by a support grant group in which volunteers are in the majority. Association staff support them by providing advice and guidance on recruitment and support of volunteers and local structure, organisation and management of their activities.

Environmental impact

The Association initiates and monitors changes to process and practice that reduce its environmental impact and sees sustainability as one of its key priorities.

Since moving to our new national office at Francis Crick House in January 2020 we have encouraged hybrid working leading to significant reduction in travel and meeting costs as staff work from home more regularly. Our online shop offering was relaunched in 2022 to introduce a sustainable products range and we now actively source sustainable products wherever possible. We also continue to replace our car fleet with new hybrid vehicles.

In 2024 we have targeted a full baseline assessment which will be followed by review of key processes around sourcing of equipment, merchandise used in fundraising, and day-to-day consumables. We will also be reviewing the channels by which we communicate with our community.

Money saved through environmental efficiencies is diverted into achieving the charity’s strategic objectives.

Management

The Board takes responsibility for governance and strategy and mandates the Chief Executive and the Executive Leadership Team to conduct operational management within clearly defined policies. A robust and formal reporting structure together with the attendance of the Chief Executive Officer and Executive Leadership Team at Board of Trustees and Board committee meetings helps to ensure that appropriate checks and balances are maintained.

Safeguarding

The Association provides services to a wide range of people and is committed to meeting the needs of people living with MND, their families and carers. We recognise that some of the people we are in contact with are adults and children or young people who may be at risk of harm. Our safeguarding policy is designed to inform and offer guidance to our staff and volunteers in the management of issues relating to protecting and promoting the welfare of adults and children at risk, and ensures we act appropriately when we become aware of an adult or child who may be at risk of harm. The policy also provides a framework

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 13

which ensures that our staff and volunteers have the appropriate information and support to enable them to recognise abuse and neglect and to take the necessary steps to prevent it happening. The Association’s Safeguarding Board and Board of Trustees regularly review our risk in relation to safeguarding issues and ensure implementation of any actions.

Whistleblowing

We take any evidence of malpractice very seriously and support anyone who is raising genuinely held concerns. We reviewed these policies in detail in 2023 and they are backed up by mandatory staff and volunteer training.

totalled £5 million and are in a managed portfolio with strict investment objectives, including the prohibition of investment in organisations whose products may be harmful to people with MND or which contribute to the causes of MND. This portfolio is intended to be retained for the long term and so the financial statements will show these as fixed asset investments and all other cash deposits as current asset investments. This portfolio grew in value by £208,000 in 2023.

During 2023, an additional £3 million was invested with Close Brothers Asset Management in short term Gilts to further diversify the Association’s investment portfolio.

Group reserves policy

Grants

Grants are awarded for both research projects and care services:

Research – we award project and programme grants, PhD studentships and Lady Edith Wolfson clinical and non-clinical fellowships. Application and decision-making processes, including comprehensive peer review, are published on the Association’s website. These processes conclude with formal approval or rejection of applications by the Board.

Care – We provide grants to existing specialist MND Care Centres and Networks. At 31 December 2023 the Association was providing financial support to 22 such centres and networks. Performance is monitored annually for existing Care Centres, with a full grant renewal process every four years.

We also offer grants for people who are living with, or affected by MND, including Cost of Living Support Grants, MND Support (Care) Grants and Quality of Life Grants as well as grants for children and young people.

Investment policy

Investments are held to cover reserves for the management of risk and for future investment opportunities. The investment objective is to provide resources to cover short term demands arising from sudden or unexpected events that could influence fundraising income. The trustees take a prudent approach to risk, holding the majority of the Association’s investments in cash deposits, near cash and general recognised cash equivalents (including but not limited to Certificates of Deposit and other short-term investments). Counter party limits and acceptable credit ratings are set by the Finance and Audit Committee. Any investment donated to the Association will ordinarily be sold at the earliest opportunity unless there is a specific request from the donor for the shares to be held as fixed asset investments. During the year, the base interest rate increases meant that returns on deposit investments improved, earning £1,062,000 in 2023 compared with £276,000 in 2022.

The trustees have adopted a robust and flexible reserves policy to meet the changing needs of the charity. This states that the general reserve should be no greater than six months general expenditure represented in cash and readily realisable investments, held centrally and within branches. Based on our 2024 expenditure plans, this is a maximum of £15.6 million. As at the year end, the unrestricted/undesignated reserves balance sat at £15.6 million. Trustees believe that this remains a prudent level given the continuing uncertainty associated with the future economic outlook which could have a detrimental impact on our ability to raise funds.

Any general funds in excess of the target limit for general reserves are required to be allocated into designated funds with trustees agreeing how these funds will be utilised. In 2023, £5 million was designated by trustees to support our recently announced investment in research nurses. The holding of designated reserves allows the Association to commit to long-term initiatives in support of our Promises and the needs of people living with MND, their families and support networks and so are a key part of our future plans. The growth in these reserves over recent years means the Association will be able to accelerate our long-term plans, knowing we have the financial resources to deliver them. The initiatives to which they are allocated, especially research, take time to identify and will then be spread over a number of years and so it is anticipated that the current funds will not be fully utilised until the end of 2027. Details of the allocation of our designated funds can be found in the financial statements.

In 2022, the Finance and Audit Committee approved an amendment to the Investment Policy that enabled the Association to invest funds in a managed investment portfolio to try and counter the high inflationary impact on our cash reserves. The initial funds (held with Close Brothers Asset Management)

14 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Statement of Trustees’ Responsibilities and Corporate Governance

Trustees are responsible for preparing the Trustees’ Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company 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 charitable company and the group and of the incoming resources and application of resources, including the income and expenditure, of the charitable group for that period. In preparing these financial statements, the trustees are required to:

The trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charitable company and the group’s transactions and disclose with reasonable accuracy at any time the financial position of the charitable group and enable them to ensure that the financial statements comply with the Companies Act 2006, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the charitable company’s constitution. They are also responsible for safeguarding the assets of the charitable company and the group and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable group’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

So far as each of the trustees is aware at the time the report is approved:

This Trustees’ Report , prepared in accordance with the Charities Act 2011 and the Companies Act 2006 was approved by the Board of Trustees on 20 May 2023 including in their capacity as company directors, the strategic report contained therein, and signed on its behalf by:

Dr Usman Khan

Chair, Board of Trustees

17 May 2024

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 15

Organisational information and financial statements

Board of Trustees

Chair: Dr Usman Khan Vice Chair: Catherine Knights Honorary Treasurer: James Marshall Dr John Ealing (from February 2023) Hazel Carter (from July 2023) Simon Croxford Elizabeth Ellis Susan Fletcher-Watts (until November 2023) Dr Katherine Jackson (until December 2023) Dr Usman Khan Catherine Knights Ian Lev James Marshall Debra Martin Dr Shaun McGee Siobhán Rooney (until July 2023) Katherine Styles (until July 2023) Kirrie Todd

Company secretary

Mark Chapman

Registered office

Francis Crick House 6 Summerhouse Road Northampton NN3 6BJ

Professional advisers

Statutory auditors

haysmacintyre LLP 10 Queen Street Place London EC4R 1AG

Solicitors

Bates Wells 2-6 Cannon Street London EC4M 6YH

Bankers

Senior management team

Tanya Curry, Chief Executive Linda Allen, Director of Fundraising (until June 2023) Mark Chapman, Director of Finance Dr Brian Dickie, Director of Research Development

Nick Goldup, Director of Care Improvement (until December 2023) Alan Gosschalk, Interim Director of Fundraising (from July 2023 to March 2024)

Sally Hughes, Director of Services and Partnerships (from February 2024)

Lloyds Bank plc Public and Community Sector 3rd Floor 25 Gresham Street London EC2V 7HN

Barclays Bank plc 4 Waterside Way The Lakes Northampton NN4 7XD

Chris James, Director of External Affairs

Jo Mountney, Director of People, Culture and Inclusion (from January 2024)

Richard Trotter, Interim Director of HR (from May 2023 to December 2023)

Chris Wade, Director of Engagement (until April 2023)

16 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Independent auditor’s report to the members of Motor Neurone Disease Association

Opinion

We have audited the financial statements of Motor Neurone Disease Association for the year ended 31 December 2023, which comprise the Consolidated Statement of Financial Activities, The Group and Charity Balance Sheets, the Statement of Cash Flows and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion, the financial statements:

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Other information

The trustees are responsible for the other information. The other information comprises the information included in the Trustees’ Annual Report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Basis for opinion

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

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charitable company’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the group and the parent charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees’ Annual Report (which incorporates the strategic report and the directors’ report).

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion:

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 17

Responsibilities of trustees for the financial statements

As explained more fully in the trustees’ responsibilities statement set out on page 15, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

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

Auditor’s responsibilities for the audit of the financial statements

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

Based on our understanding of the group and the environment in which it operates, we identified that the principal risks of non-compliance with laws and regulations related to regulatory requirements of the Charity Commission, and we considered the

extent to which non-compliance might have a material effect on the financial statements. We also considered those laws and regulations that have a direct impact on the preparation of the financial statements such as the Companies Act 2006 and the Charities Act 2011, Charity SORP and payroll tax.

We evaluated management’s incentives and opportunities for fraudulent manipulation of the financial statements (including the risk of override of controls), and determined that the principal risks were related to the posting of inappropriate journal entries and management bias in certain accounting estimates. Audit procedures performed by the engagement team included:

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or noncompliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Use of our report

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an Auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members, as a body, for our audit work, for this report, or for the opinions we have formed.

Richard Weaver (Senior Statutory Auditor)

10 June 2024

For and on behalf of Haysmacintyre LLP, Statutory Auditor, 10 Queen Street, London, EC4R 1AG

18 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Consolidated Statement of Financial Activities

(incorporating an income and expenditure account) For the year ended 31 December 2023 Company Number (02007023) and Charity Number (294354)

Unrestricted Restricted Total Funds Total funds
funds funds 2023 2023
Notes £000 £000 £000 £000
Income and endowments from:
Donations and legacies: 1a
Donations 16,324 7,112 23,436 19,519
Legacies 10,366 10,366 8,888
Charitable activities
Other trading activities 1b 1,478 1,478 906
Investments 1,062 1,062 276
Other 1c 1,580 1,580 456
Total income 30,810 7,112 37,922 30,045
Expenditure on:
Raising funds 6,357 - 6,357 4,910
Charitable activities:
Care 7,773 1,810 9,583 7,802
Research 5,136 1,983 7,119 7,473
Campaigning and raising awareness 2,335 457 2,792 1,952
Volunteer development 934 - 934 659
Total expenditure 4 22,535 4,250 26,785 22,796
Net income/ (expenditure) 3 8,275 2,862 11,137 7,249
Other recognised gains/ (losses):
Other gains/ (losses) (18) (18) (9)
Net movement in funds 8,257 2,862 11,119 7,240
Reconciliation of funds:
Total funds brought forward 27,635 5,579 33,214 25,974
Total funds carried forward 18a, 19 35,892 8,441 44,333 33,214

All movements on reserves and recognised gains and losses are shown above, and all activities are continuing.

The movement on restricted funds is shown in note 18a.

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 19

Balance Sheet

As at 31 December 2023 Company Number (02007023) and Charity Number (294354)

Group Charity
2023 2022 2023 2022
Notes £000 £000 £000 £000
Fixed assets
Tangible assets 11a 304 444 304 444
Investments (LT) 11b 5,208 5,000 5,208 5,000
Total Tangible Assets 5,512 5,444 5,512 5,444
Current assets
Stocks 13 23 20 - -
Debtors 14 10,136 9,569 10,310 10,335
Investments 15 26,805 19,326 26,805 19,326
Cash at bank and in hand 22,625 16,870 22,242 16,483
59,589 45,785 59,357 46,144
Creditors:amounts falling due within one year 16a 13,494 12,551 13,332 12,998
Net current assets 46,095 33,234 46,025 33,146
Total assets less current liabilities 51,607 38,678 51,537 38,590
Creditors:amounts falling due after
more than one year 17 7,274 5,464 7,274 5,464
Net assets 19 44,333 33,214 44,263 33,126
Accumulated funds
Restricted funds 18a 8,441 5,579 8,441 5,579
Designated funds 18a, 18b 20,222 16,147 20,222 16,147
Unrestricted funds:
Unrestricted funds 18a 15,600 11,400 15,600 11,400
Funds retained in subsidiary 12a 70 88
44,333 33,214 44,263 33,126

The financial statements on pages 19 to 43 were approved and authorised for issue by the Board of Trustees on 17 May 2024, and were signed on its behalf by:

James Marshall Treasurer

Dr Usman Khan Chair

The net movement in funds for the Association for the year ending 31 December 2023 was £11,119,000 (2022 : £7,240,000).

As permitted by Section 408 of the Companies Act 2006, no separate Statement of Financial Activities or Income and Expenditure account has been presented for the charity alone.

20 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Statement of Cash Flows

For the year ended 31 December 2023 Company Number (02007023) and Charity Number (294354)

2023 2022
Notes £000 £000
Cash fows from operating activities:
Net income/ (expenditure) for the reporting year 11,119 7,240
Adjustments for:
Depreciation and amortisation charges 11 266 263
Gift Aid donation from subsiduary (reversal) -
Intercompany eliminated on consolidation
Dividends and interest from investments (1,206) (276)
Gain on disposal of fxed assets 11 - -
(Increase) / decrease in stock 13 (3) 2
(Increase) / decrease in debtors 14 (567) (1,669)
Increase / (decrease) in creditors 16a,17 2,753 2,813
Other adjustment 1
Net cash generated from operating activities 12,363 8,373
Cash fows from investing activities:
Cost of additions to investments -
Movement in cash held as investment (Increase) / Decrease (208)
Proceeds from sales of investments - -
Decrease in cash element of investment portfolio
(Shares not realised) - -
Dividends and interest from investments 1,206 276
Reclassifcation of share portfolio from investment to Fixed Asset (5,000)
Purchase of fxed assets 11 (127) (125)
Net cash used in investing activities (4,129) 151
Increase in cash and cash equivalents in the reporting year 8,234 8,524
Cash and cash equivalents at the start of the year 41,196 32,672
Cash and cash equivalents at the end of the year 49,430 41,196

Analysis of cash and cash equivalents

Balance Balance Balance
1 January Cash fow 1 January Cash fow 31 December
2022 changes 2023 changes 2023
Group £000 £000 £000 £000 £000
Net cash
Short term deposits 17,238 7,088 24,326 2,479 26,805
Bank current accounts 15,431 1,436 16,867 5,754 22,621
Cash in hand 3 (0) 3 1 4
Net funds 32,672 8,524 41,196 8,234 49,430

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 21

Statement of Accounting Policies

Legal Status

The Association is a company limited by guarantee not having a share capital, incorporated in England and Wales (company number: 02007023) and a charity registered in England and Wales (charity number: 294354). The charity’s registered office address is 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ. The members undertake to contribute to the assets of the company in the event of it being wound up, either whilst members or within one year of the membership ceasing. The maximum contribution required from each member is £1. There were 12,231 members at 31 December 2023 (31 December 2022: 11,154).

Principal accounting policies

The principal accounting policies adopted, judgements and key sources of estimation of uncertainty in the preparation of the financial statements are as follows:

a) Basis of preparation

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) second edition (effective 1 January 2019) – (Charities SORP FRS 102), and the Companies Act 2006.

The Motor Neurone Disease Association meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).

Accruing for income derived from legacies is a material estimate for the Association. The key estimates include the valuation of residual estates due to the Association and assessing the probability of receipt.

c) Preparation of the accounts on a going concern basis

Despite the economic uncertainty post-pandemic, 2023 proved to be another strong year for the charity with reserves increasing and the Association’s financial position remaining strong. As such, the trustees consider there are no material uncertainties about the charity’s ability to continue as a going concern. Trustees regularly review potential risks and make strategic changes as and when required. The review of the charity’s financial position, reserves levels and future plans through to the end of December 2026 gives trustees confidence that the charity remains a going concern for the foreseeable future.

d) Consolidated financial statements

Consolidated financial statements have been prepared for the charity and its wholly owned subsidiary, Motor Neurone Disease (Sales) Limited. The results of this subsidiary have been included in the Consolidated Statement of Financial Activities on a line by line basis with the results of the charity.

In accordance with the exemption afforded by section 408 of the Companies Act 2006 a separate Statement of Financial Activities for Motor Neurone Disease Association has not been prepared. The surplus of the parent charity was £11,137,000 (2022: surplus £7,249,000).

e) Income

b) Critical accounting judgements and key sources of estimation uncertainty

In the application of the accounting policies, trustees are required to make judgement, estimates, and assumptions about the carrying value of assets and liabilities that are not readily apparent from other sources. The estimates and underlying assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the financial year in which the estimate is revised if the revision affects only that year, or in the year of the revision and future financial years if the revision affected current and future years.

The key area that is deemed to be material for these financial statements is as follows:

Other than income for events and conferences, government Other than income for events and conferences, government grants and legacies, income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item(s) of income have been met, it is probable that the income will be received and the amount can be measured reliably.

Income for events and conferences is recognised in the Consolidated Statement of Financial Activities in the financial year when the event takes place. Income relating to events occurring in a future year is deferred until the event takes place.

Income from government and other grants, whether ‘capital’ grants or ‘revenue’ grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred.

22 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Statement of Accounting Policies (continued)

For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the charity that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is a treated as a contingent asset and disclosed if material (see note 14).

f) Investment income

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the bank.

Other investment income is recognised when receivable and the amounts can be measured reliably.

Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.

i) Allocation of costs incurred in respect of more than one activity

Governance and the support costs of general management, finance, payroll administration, information and communications technology, human resources and facilities provision which support the charity’s activities and raising funds are all apportioned in proportion to the staff head counts. The costs of conference and event organisation are shared equally between the four areas which use these services. The allocation of governance and support costs is analysed in note 5.

j) Operating leases

Costs in respect of operating leases are charged on a straight line basis over the lease term.

g) Fund accounting

Unrestricted funds are available to spend on activities that further any of the purposes of the charity. Designated funds are unrestricted funds of the charity which the trustees have decided at their discretion to set aside to use for a specific purpose. Restricted funds are donations which the donor has specified are to be solely used for particular areas of the charity’s work or for specific projects being undertaken by the charity.

h) Expenditure and irrecoverable VAT

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably. Other than relevant salaries and support costs, expenditure includes under the following activity headings::

k) Intangible fixed assets

Represents expenditure on software licences which confer the right to use software owned by a third party and are measured at cost less accumulated amortisation and any accumlated impairment losses.

Amortisation is charged so as to allocate the cost of intangibles less their residual values on a straight line basis over their estimated useful economic life at the following rates:

Software licences 4 years

l) Tangible fixed assets

Individual assets or group of integral assets costing less than £750 are written off to the Consolidated Statement of Financial Activities as expenditure. All other equipment is capitalised at purchase price, including irrecoverable VAT, where applicable.

Equipment is depreciated on a straight line basis over its estimated useful economic life at the following rates. Depreciation is charged at half the full annual rate in the year of acquisition, and again by half in the year of disposal.

in by half in the year of disposal.
Fixtures and fttings 5 years
Computer and other equipment 2 years
Computer software 4 years

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 23

Statement of Accounting Policies (continued)

m) Investments

Investments are a form of basic financial instruments and are initially shown in the financial statements at market value. Movements in the market values of investments are shown as unrealised gains and losses in the Statement of Financial Activities.

Profits and losses on the realisation of investments are shown as realised gains and losses in the Statement of Financial Activities. Realised gains and losses on investments are calculated between sales proceeds and their opening carrying values or their purchase value if acquired subsequent to the first day of the financial year. Unrealised gains and losses are calculated as the difference between the fair value at the year end and their carrying value. Realised and unrealised investment gains and losses are combined in the Statement of Financial Activities.

Fixed asset investments comprise an investment portfolio held with Close Brothers Asset Management (CBAM). Trustees agreed to invest some of our cash funds into long term investments in order to mitigate high inflationary pressure on cash reserves. These investments are not intended to be cashed in within the next 12 months and so are treated as fixed asset investments.

The investment with CBAM held at the year end is carried in the balance sheet at fair value as at that date.

n) Financial instruments

The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value.

allowing for the costs of realisation. Provision is made where necessary for obsolete, slow moving and defective stocks.

r) Creditors and provisions

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount.

s) Long term liabilities

FRS 102 requires long term liabilities to take into account the time value of money and, where appropriate, liabilities have therefore been discounted back to their present value at the reporting date.

t) Employee benefits

The Motor Neurone Disease Association contributes to a group personal pension scheme, the assets of which are administered by Royal London. It is a defined contribution scheme. All contributed costs are accounted for on the basis of charging the cost of providing pensions over the years when the charity benefits from the employees’ services. The charity has no further liability under the scheme.

Short term benefits including holiday pay are recognised as an expense in the year in which the service is received.

Termination benefits are accounted for on an accrual basis and in line with FRS 102.

o) Cash at bank and in hand

Cash at bank and in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.

p) Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

q) Stocks

u) Taxation

As a registered charity, the Association benefits from being exempt from tax on surpluses generated by its charitable activities.

In 2019 the Association applied for Group VAT status on the basis that it had become financially beneficial for the whole group to be able tor recover some elements of VAT, rather than just the Sales Company.

The subsidiary company, as a trading company, is subject to corporation tax on the profits retained, after due allowance for the Gift Aid payment made to the Association.

Stocks are stated at the lower of cost and net realisable value. In general, cost is determined on a first in first out basis and includes transport and handling costs. Net realisable value is the price at which stocks can be sold in the normal course of business after

24 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

Income

1a Donations and legacies

Income
1a Donations and legacies
2023 2022
£000 £000
Individuals 5,986 5,675
Community and other fundraising 10,964 6,268
Appeals 1,890 2,062
Charitable foundations (see note 2) 1,219 3,262
Corporate donations 1,120 711
Tax recovered 2,257 1,541
23,436 19,519
Legacies (see note 14) 10,366 8,888
33,802 28,407

See Statement of Accounting Policies e) for treatment of legacy income

1b Other trading activities

1b Other trading activities
2023 2022
£000 £000
Charity-organised fundraising 377 425
Merchandise sales and advertising 197 154
Conferences and events 904 327
1,478 906
1c Other
2023 2022
£000 £000
Costs recovered from the International Alliance and MND (Sales) Limited 31 (7)
MRC Early in career research grants 1,405 450
Other 144 13
1,580 456

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 25

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

2 Grants receivable from Charitable foundations

During the year, the following grants of £5,000 and above were receivable:

2023 £000
Alan Davidson Foundation
151
My Name'5 Doddie Foundation
100
Wolfson Foundation
75
Heaton-Ellis Trust
66
The Constance Travis Charitable Trust
50
Darby Rimmer MND Foundation
50
Garfeld Weston Foundation
50
BNA Charitable Incorporated Organisation
40
Netherby Trust
40
Richard Mackay Charitable Trust
31
Bruce Wake Charitable Trust
30
Barbara Naylor Trust
27
Revere Charitable Trust
25
William Brake Foundation
25
Freshfeld Foundation
24
Basil Samuel Charitable Trust
20
Hollick Family Foundation
20
Lloyds Bank Foundation for England & Wales
17
Catherine Cirket Discretionary Trust
16
Edith Murphy Foundation
15
Frank Brake Charitable Trust
15
J J Fenwick Charitable Trust
15
William Kessler Charitable Trust
13
Elizabeth and Prince Zaiger Trust
12
Peacock Charitable Trust
11
The Charles Wolfson Charitable Trust
10
Duke of Newcastle's 1986 Charitable Trust
10
Fieldrose Charitable Trust
10
Goldcrest Charitable Trust
10
Lawson Trust CIO
10
P F Charitable Trust
10
Robert Barr's Charitable Trust
10
Steel Charitable Trust
10
Assurant Foundation
8
Zochonis Charitable Trust
8
Gowling WLG (UK) Charitable Trust
8		 2023 £000
Ofenheim Charitable Trust
7
Thomas and Rosemary Greenhalgh Charitable Trust
7
G C Gibson Charitable Trust
6
Pamela Cordelia Smith Charitable Trust
5
Billmeir Charitable Trust
5
Brian Wilson Charitable Trust
5
Christopher H R Reeves Charitable Trust
5
Dyers Company Charitable Trust
5
February Foundation
5
George Cadbury Trust
5
Henry C Hoare Charitable Trust
5
Hobson Charity Limited
5
James Weir Foundation
5
Jones 1986 Charitable Trust
5
Kirby Laing Foundation
5
L & R Gilley Charitable Trust
5
Light Fund Charity
5
M K Rose Charitable Trust
5
Margaret Gifen Charitable Trust
5
Michael Guest Charitable Foundation
5
Oldhurst Trust
5
Pilkington Charities Fund
5
Scarborough Group Foundation
5
Screwfx Foundation
5
The Simon Gibson Charitable Trust
5
Sir James Knott Trust
5
The Sir James Reckitt Charity
5
Sir John Priestman Charity Trust
5
Sylvia Aitken Charitable Trust
5
Tula Trust Ltd
5
Wyfold Charitable Trust
5
Anonymous or less than £5,000
17
TOTAL
1,219

In 2022, grants receivable from Charitable foundations totalled £3,262,000

26 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

3 Net income for the year

This arises after charging:

This arises after charging:
2023 2022
£000 £000
Auditors' remuneration:
External audit 35 29
Internal audit 15
Other services - -
Operating lease rentals: - -
Motor vehicles 298 290
Land and buildings 247 207
Other 10 10
Depreciation and amortisation of owned assets 266 263
Loss on disposal of fxed assets - -

4 Analysis of expenditure incurred in raising funds and charitable activities

Total expenditure incurred is further analysed as follows:

Grant
Activities funding of Support
undertaken activities costs Total Total
directly (note 6) (note 5) 2023 2022
Notes £000 £000 £000 £000 £000
Care and care centres 3,976 4,042 1,565 9,583 7,802
Research 1,613 5,228 278 7,119 7,473
Campaigning and raising awareness 2,261 - 531 2,792 1,952
Volunteering 757 - 177 934 659
Costs of charitable activity 8,607 9,270 2,551 20,428 17,886
Raising funds 4,994 - 1,363 6,357 4,910
Total resources expended 2023 13,601 9,270 3,914 26,785 22,796
Total resources expended 2022 23a 10,262 9,496 3,038 22,796

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 27

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

5 Support costs

Governance and support costs are allocated to activities in proportion to the numbers employed in each area, except for the costs of conference and event provision, which are split equally between the main areas of usage, as follows:

Campaigning Raising Total Total
Care Research and raising Volunteering funds 2023 2022
£000 £000 awareness £000 £000 £000 £000 £000
Management 251 44 85 28 218 626 543
Governance 51 9 18 5 45 128 175
Finance 192 34 65 22 168 481 521
Digital 166 29 56 19 144 414 -
Information and communications technology 426 76 144 48 371 1,065 767
Facilities 270 48 91 30 235 674 664
Human resources 208 37 71 24 181 521 363
Conferences and events 1 1 1 1 1 5 5
1,565 278 531 177 1,363 3,914 3,038

Full details of prior year support costs can be found in note 23b

6 Grants payable

Grants were awarded during the year as follows:

2023 2022
£000 £000
Grants to institutions (note 6b) 6,690 7,570
Grants to individuals 2,579 1,926
9,270 9,496

Grants made to, and for, individuals affected by motor neurone disease are for expenses such as respite care, building adaptations and equipment rental.

28 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

6 Grants payable (continued)

6
Grants payable (continued)
2023 2022
£000 £000
Balance at start of year 15,729 12,987
Awarded in year 9,270 9,496
Paid in year (6,875) (6,754)
Balance at end of year 18,124 15,729
Falling due within one year (note 16a) 10,850 10,265
Falling due after more than one year (note 17) 7,274 5,464
18,124 15,729

Commitments

In addition to the expenditure recognised in the accounts, the Group and Charity has outstanding commitments to fund the MND Care Centre Network. Full payment of Care Centre grants is contingent on the outcome of annual reviews and therefore only 12 months of liability has been recognised at the year end.

2023 2022
Group and Charity £000 £000
Payable within one year 1,084 881
1,084 881

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 29

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

6b Grants payable split by benefactor

During the year, grants were payable to the following institutions:

2023
£000
University of Shefeld
2,083
Research
University of Edinburgh
758
Research
University College London
681
Research
Kings College London
512
Research
Trinity College Dublin
462
Research
University of Liverpool
307
Research
Royal Papworth Hospital
210
Research
Belfast Care Centre
132
Care
University of Sussex
109
Research
Manchester Metropolitan University
104
Research
South Wales Care Network (Cardif)
92
Care
The James Cook University Hospital
(Middlesborough)
80
Care
Kings College
74
Care
Plymouth Primary Care Trust (S.West)
74
Care
National Hospital, London
71
Care
Leeds Care Centre
68
Care
Liverpool Care Centre
67
Care
Cambridge Care Centre
63
Care
Bristol Care Centre
61
Care
Norfolk/Norwich Care Centre
60
Care
University Hospitals of North
Midlands NHS Trust
60
Care		 2023
£000
Southampton Care Centre
58
Care
University Hospital, Birmingham
56
Care
Sussex MND Care &
Research Network
52
Care
Barts Care Centre
51
Care
The Francis Crick Institute
50
Research
Shefeld Care Centre
50
Care
Lancashire and South Cumbria /
Preston Care Centre
47
Care
Nottingham University Hospital
35
Care
Manchester Care Centre
34
Care
University of Oxford
26
Research
Newcastle General Hospital
23
Care
Newcastle University
20
Care
University of Exeter
20
Research
Belfast Health and Social Care Trust
14
Research
Bereavement Project
14
Care
Science Media Centre
6
Research
Royal Vetinary College
6
Research
TOTAL
6,690
In 2022, grants payable totalling £7,570,000 were made.

30 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

7 Staff costs, the cost of key management personnel and trustee remuneration and expenses

The employment costs of all employees were:

The employment costs of all employees were:
2023 2022
£000 £000
Gross wages and salaries 7,858 6,829
Social security costs 801 708
Other pension costs 558 488
Medical insurance 12 39
9,229 8,064

The total number of employees whose emoluments for the year (not including pension contributions) exceeded £80,000 relates to all of the seven members of the Executive Leadership Team in position throughout 2023. These emoluments are identified as follows:

2023 2022
£130,000 - £139,999 1
£100,000 - £109,999 1 1
£90,000 - £99,999 3 2
£80,000 - £89,999 2 4
£70,000 - £79,999 2 -
£60,000 - £69,999 8 3

Employers pension contributions for the 7 higher paid employees above are £80,379 for the year ended 31 December 2023 (2022: £55,925).

The trustees devolved the day-to-day running of the Association to the 7 members of the senior management team, who served in the year, as identified on page 16 of these accounts. As such, this body is identified as the key management personnel of the Association and included below are the following payments specifically to this group:

2023 2022
£000 £000
Gross wages and salaries 692 629
Benefts-in-kind 1 4
Pension costs 53 56
Social security costs 77 76
823 765
2023 2022
Trustee remuneration and expenses £000 £000
Reimbursement directly to trustees 3 5
Payment to third parties in respect of trustee expenses 2 6
5 11
Number of trustees holding ofce during the year 16 19

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 31

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

The charity trustees neither received nor waived any emoluments during the year (2022: £nil). Trustee expenses in the year include travel and subsistence expenses totalling £4,787 (2022: £11,205). These expenses were all incurred in the course of their duties and were reimbursed, or paid directly to third parties on their behalf as shown above. Trustee indemnity insurance is held at a cost of £1,573 (2022: £1,573).

There were no transactions during the year between the Group and any related party.

8 Staff numbers

The average headcount number of employees for the year is shown below:

2023 2022
Headcount Headcount
Care 86 82
Research 15 14
Campaigning and raising awareness 29 28
Volunteering 10 9
Raising funds 75 71
215 204

Staff numbers above include an appropriate apportionment of support staff.

9 Pension costs

The Association operates defined contribution personal pension schemes for employees. The assets of the schemes are held separately from those of the Association in funds independently administered by Royal London. The amounts paid to the funds represent contributions from both the employer and employees. The employer’s contributions in the year were £558,486 (2022: £487,836). There are no other ongoing obligations arising. Amounts outstanding at year end were £0 (2022: £0).

10 Taxation

The Association is a registered charity and is exempt from corporation tax, income tax and capital gains tax as all its income is charitable and is applied for charitable purposes.

The subsidiary company is liable for corporation tax on the profits retained. This was £nil in 2023.

32 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

11a Fixed assets
Computers, Total Total
Motor vehicles fxtures, fttings
and equipment		 tangible
fxed assets		 intangible
fxed assets*
Group and Charity £000 £000 £000 £000
Cost
At 1 January 2023 1,727 1,727 46
Additions - 127 127 -
Disposals - - - -
At 31 December 2023 - 1,854 1,854 46
Depreciation and amortisation
At 1 January 2023 1,284 1,284 46
Charged in the year - 266 266 -
Eliminated on disposal - - - -
At 31 December 2023 - 1,550 1,550 46
Net book value
At 31 December 2023 - 304 304 -
At 31 December 2022 - 444 444 -
* Intangible fxed assets comprises purchased software licences.
11b Fixed Assets - Investments (Long Term)
2023 2022
Group and Charity £000 £000
Market value at 1 January 5,000 -
Acquisitions at cost - 5,000
Sale proceeds from disposals - -
Gain / (Loss) in year 208 -
Market value at 31 December 5,208 5,000
Close Brothers - Asset Portfolio 5,208 5,000
5,208 5,000

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 33

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

12 Fixed asset investments

Motor Neurone Disease (Sales) Limited

The Association owns a wholly owned subsidiary company, Motor Neurone Disease (Sales) Limited, which is registered in England and Wales (Company number: 01989172) at Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ. This subsidiary operates mail order catalogues selling promotional clothing, gifts and cards and runs Challenge and other fundraising events. All taxable profits are donated to the Association each year under Gift Aid. Audited accounts are filed with the Registrar of Companies, and below is a summary of its trading results for the year ended 31 December 2023:

Motor Neurone Disease (Sales) Limited 2023 2022
Income Statement £000 £000
Turnover 492 420
Cost of sales (481) (324)
Gross proft 11 96
Administration costs (26) (21)
Proft / (Loss) before interest and tax (15) 75
Net interest payable (3) (3)
Proft / (Loss) on ordinary activities before tax (18) 72
Corporation tax - -
Proft / (Loss) for the fnancial year (18) 72

The aggregate of the assets, liabilities and funds was:

The aggregate of the assets, liabilities and funds was:
2023 2022
£000 £000
Assets 635 417
Liabilities (565) (257)
Funds (representing 2 ordinary shares of £1 each) 70 160
Proft gifted to charity in following year (72)
Net funds after transfer of proft 70 88

The investment held by the Charity of £2 (2020: £2) represents shares in the subsidiary company at cost. The parent charity’s gross income and results for the year are as follows:

2023 2022
£000 £000
Gross income 37,922 30,045
Surplus for the year 11,137 7,249

34 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

13 Stocks
Group Charity
2023 2022 2023 2022
£000 £000 £000 £000
Purchased goods for resale 23 20 - -
14 Debtors
Group Charity
2023 2022 2023 2022
£000 £000 £000 £000
Loan to subsidiary company - - 50 50
Amounts due from subsidiary company - - 353 64
Legacies 8,767 8,143 8,903 8,678
Other debtors 507 337 132 454
Income tax reclaimable 592 578 592 578
Prepayments 270 511 280 511
10,136 9,569 10,310 10,335

15 Current asset investments

The total of current asset investments £26,805,389 (2022: £19,326,469) is constituted by fixed term and other bank and building society deposits with maturity dates within 12 months.

16a Creditors: amounts falling due within one year

Group Charity
2023 2022 2023 2022
£000 £000 £000 £000
Accruals for grants payable 10,850 10,265 10,850 10,265
Trade creditors 1,359 615 1,346 1,155
Accruals and deferred income (note 16b) 819 898 753 968
Payroll taxation and social security 223 280 223 280
Provisions and other creditors (note 21) 243 493 160 330
13,494 12,551 13,332 12,998

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 35

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

16b Analysis of deferred income

16b Analysis of deferred income
Group Charity
2023 2022 2023 2022
£000 £000 £000 £000
Deferred income at 1 January 195 28 195 28
Released during the year (195) (28) (195) (28)
Deferred during the year 8 195 8 195
Deferred income at 31 December 8 195 8 195

17 Creditors: amounts falling due after one year

Group Charity
2023 2022 2023 2022
£000 £000 £000 £000
Research & Care Centre Creditors 7,274 5,464 7,274 5,464
7,274 5,464 7,274 5,464

18a Statement of funds

18a Statement of funds
Balance Balance Balance
at 1 at 1 at 31
January January December
2022 Income Expenditure 2023 Income Expenditure 2023
Group and Charity £000 £000 £000 £000 £000 £000 £000
Unrestricted funds:
General funds 8,279 18,401 (15,192) 11,488 23,251 (19,069) 15,670
Designated funds:
Care Centre grants 881 881 1,084 (881) 1,084
Ice Bucket Challenge funded projects:
Research 1 66 (67) - -
Care 2 21 (23) - -
Campaigning and raising awareness 55 (55) - - -
Volunteering and new opportunities - - - -
Research & Strategic Investment 11,717 6,297 (2,748) 15,266 6,475 (2,603) 19,138
note 18b 12,656 6,329 (2,838) 16,147 7,559 (3,484) 20,222
Total unrestricted funds 20,935 24,730 (18,030) 27,635 30,810 (22,553) 35,892

36 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

18a Statement of funds (continued) 18a Statement of funds (continued)
Balance Balance Balance
at 1 at 1 at 31
January January December
2022 Income Expenditure 2023 Income Expenditure 2023
Group and Charity £000 £000 £000 £000 £000 £000 £000
Restricted funds:
Research 1,428 3,913 (2,435) 2,906 5,249 (1,983) 6,172
Care 1,584 1,207 (1,930) 861 1,399 (1,810) 450
Volunteering - - - - -
Branches and Groups 2,027 180 (395) 1,812 430 (423) 1,819
Campaigning - 15 (15) - 34 (34) -
Total restricted funds 5,039 5,315 (4,775) 5,579 7,112 (4,250) 8,441
Total funds 25,974 30,045 (22,805) 33,214 37,922 (26,803) 44,333
Balance Balance Balance
at 1 at 1 at 31
January January December
2022 Income Expenditure 2023 Income Expenditure 2023
Charity £000 £000 £000 £000 £000 £000 £000
Unrestricted funds:
General funds 8,191 18,329 (15,120) 11,400 23,477 (19,277) 15,600
Designated funds note 18b 12,656 6,329 (2,838) 16,147 7,351 (3,276) 20,222
20,847 24,658 (17,958) 27,547 30,828 (22,553) 35,822
Restricted funds 5,039 5,315 (4,775) 5,579 7,112 (4,250) 8,441
Total funds 25,886 29,973 (22,733) 33,126 37,940 (26,803) 44,263

Restricted Funds

Restricted funds are utilised as follows:

Research for grant payments to be made enabling various research projects to continue Care for equipment and care / support provided to people living with MND Branches and Groups for care for people with MND within local areas Campaigning for raising awareness of MND across England, Wales and Northern Ireland

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 37

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

18b Designated funds

Designated funds represent:

2023 2022
£000 £000
i) the amounts committed by the Association in respect of grants payable for the MND
Care Centre Network not refected in the Consolidated Statement of Financial Activities.
Care Centre commitments run for up to 4 years and so the funds designated for these are
required to meet future commitments on agreed contracts extending to 2025. 1,084 881
ii) £9m of the 2021 surplus was designated for the delivery of our new Promises.
The remaining balances of these designations are detailed below:
Research - supporting Promise 1; clinical trials, access to treatments and
translational research 3,786 4,570
Promises 2,3,4,5; supporting equity in provision of care, initiatives to deliver personalised
care, policy and campaign work and an inclusive service provision 4,577 4,577
Strategic investments, including provision of access to multi-disciplinary care 175 519
iii) In 2022, the Board approved the designation of a further £5.6m of the 2022 surplus to
support increased Research opportunities (increasing access to treatments, genetic testing
and counselling and support for new Research aligned with the #United2EndMND coalition) 5,600 5,600
iv) In 2023, the Board appoved a scheme to provide a network of Research Nurses across
the Association’s Care Centres & Networks. £5m from the 2023 surplus was set aside for
this initiative 5,000 -
20,222 16,147

19 Analysis of net assets between funds

2023
Restricted Designated General Total
funds funds funds funds
Group: £000 £000 £000 £000
Fund balances at 31 December 2023 are represented by:
Fixed assets - - 304 304
Net current assets less long-term liabilities 8,441 20,222 15,366 44,029
Total net assets 8,441 20,222 15,670 44,333
Charity: £000 £000 £000 £000
Fund balances at 31 December 2023 are represented by:
Fixed assets - - 304 304
Net current assets less long-term liabilities 8,441 20,222 15,296 43,959
Total net assets 8,441 20,222 15,600 44,263

38 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

19 Analysis of net assets between funds (continued)

2022

2022
Restricted Designated General Total
funds funds funds funds
Group: £000 £000 £000 £000
Fund balances at 31 December 2022 are represented by:
Fixed assets - - 444 444
Net current assets less long-term liabilities 5,579 16,147 11,044 32,770
Total net assets 5,579 16,147 11,488 33,214
Charity: £000 £000 £000 £000
Fund balances at 31 December 2022 are represented by:
Fixed assets - - 444 444
Net current assets less long-term liabilities 5,579 16,147 10,956 32,682
Total net assets 5,579 16,147 11,400 33,126

20 Leasing commitments

Operating leases

At 31 December the Group and Charity had the following future minimum lease payments under non-cancellable operating leases:

2023 2022
£000 £000
Within one year 278 323
Between two to fve years 601 840
Over fve years 108 108
987 1,271

The charge to the Statement of Financial Activities is £277,584 (2022: £323,147).

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 39

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

21 Provisions for liabilities and charges

Leasehold Bad debts Obsolete
dilapidations (incl Legacy) stock Total
Charity £000 £000 £000 £000
At 1 January 2023 99 86 - 185
Additions - - - -
Utilised - - - -
Balance at 31 December 2023 99 86 - 185
Leasehold Bad Obsolete
dilapidations debts stock Total
Group £000 £000 £000 £000
At 1 January 2023 99 86 - 185
Additions - - - -
Utilised - - - -
Balance at 31 December 2023 99 86 - 185

These amounts have been included within Provisions and other creditors in note 16a.

40 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

  1. Consolidated Statement of Financial Activities (incorporating an income and expenditure account) For the year ending 31 December 2022
Restricted Total Funds
Unrestricted Funds Funds 2022
£000 £000 £000
Income and endowments from:
Donations and legacies:
Donations 14,204 5,315 19,519
Legacies 8,888 8,888
Charitable activities
Other trading activities 906 - 906
Investments 276 - 276
Other 456 456
Total income 24,730 5,315 30,045
Expenditure on:
Raising funds 4,910 - 4,910
Charitable activities:
Care 5,872 1,930 7,802
Research 5,038 2,435 7,473
Campaigning and raising awareness 1,542 410 1,952
Volunteer development 659 - 659
Total expenditure 18,021 4,775 22,796
Net gain / (loss) on investments - - -
Net income for the year 6,709 540 7,249
Other recognised gains/ (losses) :
Gains/ (losses) on revaluation of fxed assets - - -
Other gains/ (losses) (9) - (9)
Net movement in funds 6,700 540 7,240
Reconciliation of funds:
Total funds brought forward 20,935 5,039 25,974
Total funds carried forward 27,635 5,579 33,214

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 41

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

23 Prior year figures

23a Analysis of expenditure incurred in raising funds and charitable activities

Total expenditure incurred is further analysed as follows:

Grant
funding of Support Total
Activities activities costs 2022
undertaken directly (note 6) (note 5) 12 months
£000 £000 £000 £000
Care and care centres 3,754 2,833 1,215 7,802
Research 594 6,663 216 7,473
Campaigning and raising awareness 1,540 - 412 1,952
Volunteering 521 - 138 659
Costs of charitable activity 6,409 9,496 1,981 17,886
Raising funds 3,853 - 1,057 4,910
Total resources expended 2022 (12 months) 10,262 9,496 3,038 22,796

23b Support costs

Governance and support costs are allocated to activities in proportion to the numbers employed in each area, except for the costs of conference and event provision, which are split equally between the main areas of usage, as follows:

Total
Campaigning Raising 2022
Care Research awareness Volunteering funds 12 months
£000 £000 £000 £000 £000 £000
Management 217 39 73 25 189 543
Governance 70 12 24 8 61 175
Finance 208 37 71 23 182 521
Information and communications technology 307 54 104 35 267 767
Facilities 266 47 90 29 232 664
Human resources 145 26 49 17 126 363
Conferences and events 2 1 1 1 - 5
1,215 216 412 138 1,057 3,038

42 | Motor Neurone Disease Association Annual Report for the year ended 31 December 2023

Notes to the Consolidated Financial Statements

For the year ended 31 December 2023

23 Prior year figures (continued)

23c Analysis of net assets between funds

23 Prior year fgures (continued)
23c Analysis of net assets between funds
Restricted Designated General Total
funds funds funds funds
Group: £000 £000 £000 £000
Fund balances at 31 December 2022 are represented by:
Fixed assets - - 444 444
Net current assets less long-term liabilities 5,579 16,147 11,044 32,770
Total net assets 5,579 16,147 11,488 33,214
Charity: £000 £000 £000 £000
Fund balances at 31 December 2022 are represented by:
Fixed assets - - 444 444
Net current assets less long-term liabilities 5,579 16,147 10,956 32,682
Total net assets 5,579 16,147 11,400 33,126

Motor Neurone Disease Association Annual Report for the year ended 31 December 2023 | 43

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Cover: Louise Jordan with her husband Rob in 2023, photographed during filming for the Associations 2024 TV advertising campaign.