FINANCIAL REVIEW 2022-23 spinal Muscular Atrophyuk
ABOUT SMA UK
Founded in 1985, Spinal Muscular Atrophy UK is the UK’s leading charity for Spinal Muscular Atrophy (SMA), a rare, genetic, neuromuscular condition that causes muscle weakness and loss of movement.
Our Vision
Everyone affected by SMA will have access to the best care, support and treatment and there will be no barriers preventing full inclusion in society
Our Mission
We work tirelessly to raise awareness of SMA, to be a leading advocate for individuals and families and to ensure timely access to diagnosis, effective treatment and best management for all affected by SMA.
We listen to and support our community to make informed choices and will bring together skills, knowledge and resources in the UK and beyond, in our quest to optimise the future lives of all affected by SMA.
Our Guiding Principles
Spinal Muscular Atrophy (SMA) is a complex and rare neuromuscular condition that affects each individual and their family differently. We will always be respectful of each person’s needs and choices. All face the challenge of obtaining the right support, care and opportunities to enable them to live long and fulfilling lives; some face the distress of early bereavement.
TREASURERS REPORT
Income for the year was £924k an increase of nearly 9% on the prior year. The charity benefited from a National Lotteries Grant of £154k and community fundraising has been an important source of income again this year with tremendous efforts from the fundraising team and trustees.
The total pharmaceutical funding received during the year was £314k made up of £208k for support services and £107k for Newborn Screening Alliance together this was 34% of total income as compared to 5% in the prior year. Specific donations received in 2022/23 were £150k from Novartis, £41k from Roche, £9k Abbvie and £8k Scholar Rock. In addition, the following Pharma companies supported the Newborn Screening Alliance: Novartis £67k and Roche £40k. We are committed to transparency on pharmaceutical funding and ensure that we do not accept funding from any party if we feel it will place the charity under undue pressure to act in a way that does not support or compromises our charitable objectives or independence.
SMA UK’s spending is broadly divided between information provision, support and research – our charitable purpose - and fundraising and administration. We aim to maximise spending on our core purpose and ensure that other costs are carefully monitored. This year, the charity has had to cope with inflationary increases in its staff costs.
The fundraising team is now at full strength led by a Head of Communications and Fundraising to engage in both fundraising and communications work.
Overall there has been an increase in expenditure in the year of £142k or 16.5%. I am pleased to report that the proportion of our costs that was spent on our charitable purpose, our value in the pound, rose from 68p to 69p as resources were focused on provision of support to the SMA community, the Newborn screening Alliance and research.
Our net income for 2022/23 was a surplus of £67k compared to £124k in the prior year. Value for money in our activities and the control of expenditure remains a priority so that the charity is sustainable for the future. As we look to 2023/4 there is continued pressure on fundraising and the need for trust, major donor and pharmaceutical support, especially given the general economic and inflationary environment. We have finished the year with a strong cash position of £628k and the board will continue to monitor activities and reserves very carefully.
Katherine Jackson Treasurer
*Figures have been taken to the nearest decimal place for the numbers against the pharma income
FINANCIAL REVIEW
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
REPORT OF THE TRUSTEES
for the Year Ended 31 March 2023
The trustees who, until 4th August 2022, when SMA UK became a Charitable Incorporated Organisation (CIO), were also directors of the organisation for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 31 March 2023. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).
OBJECTIVES AND ACTIVITIES
Objectives and aims
As stated in its Constitution, Spinal Muscular Atrophy UK is established for:
• 3.1 The relief of people living with Spinal Muscular Atrophy and related medical conditions and to raise the public’s awareness of such conditions.
• 3.2 The relief of persons who are in need after experiencing a bereavement or loss due to Spinal Muscular Atrophy.
Public benefit
The Trustees confirm that they have referred 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 future activities.
• 3.3 The promotion of research into the causes and treatment of Spinal Muscular Atrophy.
STRATEGIC REPORT
Achievement and performance
A detailed overview of the charity achievements and performance can be found in the Annual report 2023.
Future plans
We will continue to listen, advocate and take action on the needs of the SMA community and continue to raise awareness of SMA. The charity will be critical to ensure that we get continued universal access to treatment for every person of all ages and abilities in the SMA community.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
We are already strongly advocating through the UK NBS Alliance and parliamentarians to ensure the UK Newborn Screening Committee include SMA into the existing heel pick test. We are acutely aware that further delays can have a devasting impact for families recently diagnosed with the condition and the need for speed is imperative.
The SMAUK team will be working with adults living with SMA to ensure their voices are fundamental in any decision making when shaping the SMA Care UK project.
We know that there are several clinical trials in the pipeline for complementary therapies and our team will make sure the SMA community has up to date, industry recognised information and can make informed decisions to whether they would like to be involved in any trials.
As a charity we would not be able to carry out our vital work were it not for our incredible supporters and donors. We will develop a clear strategic plan to ensure the long-term sustainability of the charity that focuses on the SMA community needs and priorities and drives life enhancing change.
FINANCIAL REVIEW
Katharine Jackson
Treasurer
Investment policy
No investments are currently held by the Charity. The investment policy is reviewed annually.
Reserves policy
Restricted reserves will always be applied in accordance with the Trust/donor's award specification. Where there is no specific budget, an element or general (core) overheads will be recovered against those reserves. The percentage recovery date is a matter of judgement; however, costs allocated will be reasonable, proportionate, justi fiable and transparent.
Unrestricted cash reserves should be not less than three months of unrestricted expenditure, based on the most recent three-months of unrestricted expenditure.
In response to the cost of living crisis and high inflationary environment, Trustees have reduced the reserves policy to two months of predicted future expenditure with an additional buffer of £100,000 to be held in reserve in case of unforeseen funding issues.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
STRUCTURE, GOVERNANCE AND MANAGEMENT
GOVERNING DOCUMENT
The Charity is governed by its Constitution .
APPOINTMENT OF TRUSTEES
Trustees are recruited as required to fill specific gaps and to complement the management experience of the Board of Trustees. Appointments are made in accordance with the Constitution, after the appointment has been approved by the resolution of Trustees.
ORGANISATIONAL STRUCTURE
All policy, strategy and financial decisions relating to the Charity have to be formally approved by the Board of Trustees. The Board meets four times a year with an additional meeting for the AGM. Meetings are held virtually or at the charity’s offices in Stratford upon Avon or suitable venue.,
RISK MANAGEMENT
The Trustees have a duty to identify and review the risks to which the Charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.
The Trustees carried out regular reviews of the key risks affecting the Charity in the course of the year and took appropriate action. This is recorded on a Risk register
REFERENCE & ADMINISTRATIVE DETAILS
Registered Company number (until 4th August 2022) 05137534 (England and Wales)
Registered Charity number
Registered office
Unit 9 Shottery Brook Office Park Timothy's Bridge Road Stratford upon Avon Warwickshire CV37 9NR
1106815
Auditors
Company Secretary
A Smith-Morgan
Trustees
T J D Sheffield C S B Knight D J Waltier Dr R Quinlivan T J Mildon
M T Dearlove K M Jackson M P Collins
B M O Morris L E J West Dr A M E Smith Dr A M Childs K Y Edwards J M Fiorentini
Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA
Patrons
Professor V Dubowitz
S Madipalli C M Gray
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
TRUSTEES' RESPONSIBILITY STATEMENT
The trustees (who were, until 4th August 2022, also the directors of Spinal Muscular Atrophy UK for the purposes of company law) are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) including Financial Reporting Standard 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland".
Company law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the Charitable Incorporated Organisation and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that period. In preparing those financial statements, the trustees are required to
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Select suitable accounting policies and then apply them consistently; Observe the methods and principles in the Charity SORP;
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Make judgements and estimates that are reasonable and prudent; State whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;
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Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in business.
The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the Charitable Incorporated Organisationand to enable them to ensure that the financial statements, until 4th August 2022, compliedy with the Companies Act 2006. They are also responsible for safeguarding the assets of the Charitable Incorporated Organisationand hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
In so far as the trustees are aware:
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there is no relevant audit information of which the Charitable Incorporated Organisation auditors are unaware; and
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the trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
Report of the trustees, incorporating a strategic report, approved by order of the board of trustees, as the company trustees, on 16/08/2023 and signed on the board's behalf by:
.................................................
M T Dearlove - Trustee
OPINION
We have audited the financial statements of Spinal Muscular Atrophy UK (Charitable Incorporated Organisation) for the year ended 31 March 2023 which comprise the Statement of Financial Activities, the Statement of Financial Position, 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 (United Kingdom Generally Accepted Accounting Practice), including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'.
In our opinion the financial statements:
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Give a true and fair view of the state of the Charitable Incorporated Organisationaffairs as at 31 March 2023 and of its incoming resources and application of resources, including its income and expenditure, for the year then ended;
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Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'; Have been prepared in accordance with the requirements of the Charities Act 2011;.
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 Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the Charitable Incorporated Organisationin 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.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
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 Incorporated Organisation ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
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 Annual Report, other than the financial statements and our Report of the Independent Auditors thereon.
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 this gives rise to a material misstatement in the financial statements themselves. 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.
Matters on which we are required to report by exception
We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion:
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
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The information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or
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The Charitable Incorporated Organisation has not kept adequate accounting records; or
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The financial statements are not in agreement with the accounting records and returns; or
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We have not received all the information and explanations we require for our audit.
RESPONSIBILITIES OF TRUSTEES
As explained more fully in the Trustees' Responsibilities Statement, the trustees (who until 4th August 2022 were also the directors of 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 Charitable Incorporated Organisation 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 Charitable Incorporated Organisation or to cease operations, or have no realistic alternative but to do so.
OUR RESPONSIBILITIES FOR THE AUDIT OF THE FINANCIAL STATEMENTS
We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.
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 a Report of the Independent Auditors 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.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
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. 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 non-compliance 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 Report of the Independent Auditors.
USE OF OUR REPORT
This report is made solely to the charity's trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity's trustees as a body, for our audit work, for this report, or for the opinions we have formed.
For and on behalf of Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA
David Cooper
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
STATEMENT OF FINANCIAL ACTIVITIES for the Year Ended 31 March 2023
| Notes | Unrestircted funds (£) |
Restricted funds (£) |
2023 Total Funds (£) |
2022 Total Funds (£) |
|
|---|---|---|---|---|---|
| INCOME AND ENDOWMENTS FROM | |||||
| Donations and Legacies | 2 | 423,127 | 495,215 | 918,342 | 834,596 |
| Other trading activities | 3 | 5,743 | - | 5,743 | 5,743 |
| Investment income | 4 | 588 | - | 588 | 130 |
| Total | 429,458 | 495,215 | 924,673 | 839,420 | |
| EXPENDITURE ON | |||||
| Raising funds | 5 | 169,411 | - | 169,411 | 161,871 |
| CHARITABLE ACTIVITIES | 6 | ||||
| Provision of support | 157,878 | 443,691 | 601,569 | 379,520 | |
| Governance costs | 64,973 | - | 64,973 | 68,228 | |
| Research related activity | 20,686 | 884 | 21,570 | 105,847 | |
| Total | 412,948 | 444,575 | 857,523 | 715,466 | |
| NET INCOME | 16,510 | 50,640 | 67,150 | 123,954 | |
| Transfers between funds | 17 | (367) | 367 | - | - |
| Net movement in funds | 16,143 | 51,007 | 67,150 | 123,954 | |
| RECONCILIATION OF FUNDS | |||||
| Total funds brought forward | 548,837 | 40,327 | 589,164 | 465,210 | |
| TOTAL FUNDS CARRIED FORWARD | 564,980 | 91,334 | 656,314 | 589,164 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
STATEMENT OF FINANCIAL POSITION
31 March 2023
| Notes Unrestircted funds (£) Restricted funds (£) 2023 Total Funds (£) 2022 Total Funds (£) |
Notes Unrestircted funds (£) Restricted funds (£) 2023 Total Funds (£) 2022 Total Funds (£) |
|---|---|
| FIXED ASSETS Tangible assets 12 CURRENT ASSETS Stocks 13 Debtors 14 Cash at bank and in hand CREDITORS Amounts falling due within one year 15 NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES NET ASSETS FUNDS Unrestricted funds: General fund Restricted funds: General fund 17 |
7,037 - 7,037 8,116 5,791 - 5,791 6,285 36,117 - 36,117 15,239 536,710 91,334 628,044 591,204 578,618 91,334 669,952 612,728 (20,675) - (20,675) (31,680) 557,943 91,334 649,277 581,048 564,980 91,334 656,314 589,164 564,980 91,334 656,314 589,164 564,980 548,837 91,334 40,327 |
| TOTAL FUNDS | 656,314 589,164 |
These financial statements have been audited under the requirements of Section 145 of the Charities Act 2011.
The financial statements were approved by the Board of Trustees and authorised for issue on 16/08/2023 and were signed on its behalf by:
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............................................. ............................................. K M Jackson - Trustee M T Dearlove - Trustee
16.08.2023
16.08.2023
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
STATEMENT OF CASH FLOWS for the Year Ended 31 March 2023
| Notes |
2023 (£) |
2022 (£) |
|---|---|---|
| CASH FLOWS FROM OPERATING ACTIVITIES Cash generated from operations 1 Cash generated from operations CASH FLOWS FROM INVESTING ACTIVITIES Purchase of tangible fixed assets Interest received Net cash used in investing activities CHANGE IN CASH AND CASH EQUIVALENTS IN THE REPORTING PERIOD CASH AND CASH EQUIVALENTS AT THE BEGINNING OF THE REPORTING PERIOD CASH AND CASH EQUIVALENTS AT THE END OF THE REPORTING PERIOD |
38,647 38,647 (2,395) 588 (1,807) 36,840 591,204 628,044 |
130,371 130,371 (8,223) 130 (8,093) 122,278 468,926 591,204 |
NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2023
1. RECONCILIATION OF NET INCOME TO NET CASH FLOW FROM OPERATING ACTIVITIES
| 2023 (£) | 2022 (£) | |
|---|---|---|
| NET INCOME FOR THE REPORTING PERIOD (AS PER THE STATEMENT OF FINANCIAL ACTIVITIES) |
67,150 | 123,954 |
| ADJUSTMENTS FOR: | ||
| Depreciation charges | 3,474 | 4,253 |
| Interest received | (588) | 130 |
| Decrease/(increase) in stocks | 494 | (29) |
| Increase in debtors | (20,878) | (6,600) |
| (Decrease)/increase in creditors | (11,005) | 8,923 |
| Net cash provided by operations | 38,647 | 130,371 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
2. ANALYSIS OF CHANGES IN NET FUNDS
| At 1.4.22 (£) | 2023 (£) | 2022 (£) | |
|---|---|---|---|
| NET CASH | |||
| (Decrease)/increase in creditors | 591,204 | 36,840 | 628,044 |
| 591,204 | 36,840 | 628,044 | |
| TOTAL FUNDS | 591,204 | 36,840 | 628,044 |
NOTES TO THE FINANCIAL STATEMENTS
for the Year Ended 31 March 2023
1. ACCOUNTING POLICIES
BASIS OF PREPARING THE FINANCIAL STATEMENTS
The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.
INCOME
All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.
EXPENDITURE
Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
TANGIBLE FIXED ASSETS
Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.
Office equipment - 10 - 20% on cost Database - 14.3% on cost Computer equipment - 25% on cost
STOCKS
Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.
TAXATION
The charity is exempt from corporation tax on its charitable activities.
FUND ACCOUNTING
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular purposes within the objects of the charity.Restrictions arise when specified by the donor or when funds are raised for particular purposes.
| 2023 (£) 2. DONATIONS AND LEGACIES 2022 (£) Donations and gifts 759,199 680,272 Legacies 5,312 25,000 The National Lottery Community Fund 153,831 129,324 918,342 834,596 |
2023 (£) 2. DONATIONS AND LEGACIES 2022 (£) Donations and gifts 759,199 680,272 Legacies 5,312 25,000 The National Lottery Community Fund 153,831 129,324 918,342 834,596 |
|---|---|
| 759,199 5,312 153,831 |
|
| 2023 (£) 3. OTHER TRADING ACTIVITIES 2022 (£) |
|
| Merchandise sales 5,743 4,694 |
|
| 2023 (£) 4. INVESTMENT INCOME 2022 (£) |
|
| Bank interest 588 130 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
| 5. RAISING FUNDS | 2023 (£) | 2022 (£) |
|---|---|---|
| RAISING DONATIONS AND LEGACIES | ||
| Staff costs | 133,680 | 94,642 |
| Fundraising and publicity | 21,090 | 25,817 |
| Events and promotions | 12,304 | 38,702 |
| Cost of merchandise sales | 2,337 | 2,710 |
| 169,411 | 161,871 | |
| 6. CHARITABLE ACTIVITIES COSTS | 2023 (£) | 2022 (£) |
| PROVISION OF SUPPORT | ||
| Staff costs and other expenses | 373,414 | 277,712 |
| Information and awareness raising | 34,641 | 7,465 |
| Shared experiences network | 24,045 | 27,048 |
| Outreach service | 48,285 | 37,923 |
| Welfare and equipment grants | 121,184 | 29,372 |
| 601,569 | 379,520 | |
| RESEARCH RELATED ACTIVITY | ||
| Staff costs and other expenses | 18,093 | 64,423 |
| Medical research grants | - | 35,072 |
| Other research activities | 3,477 | 6,352 |
| 21,570 | 105,847 | |
| 7. SUPPORT COSTS | 2023 (£) | 2022 (£) |
| Staff costs and other expenses | 51,285 | 48,301 |
| Professional fees and bank charges | 6,478 | 8,939 |
| Other costs | 7,210 | 10,988 |
| 64,973 | 68,228 | |
| 8. NET INCOME /(EXPENDITURE) | 2023 (£) | 2022 (£) |
| Depreciation - owned assets | 3,474 | 4,253 |
| Fees payable to auditor for: | ||
| Audit | 1,750 | 1,500 |
| Other services | 3,450 | 3,265 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
9. TRUSTEES' REMUNERATION AND BENEFITS
There were no trustees' remuneration or other benefits for the year ended 31 March 2023 nor for the year ended 31 March 2022.
Trustees' expenses
There were no trustees' expenses reimbursed for the year ended 31 March 2023 (2022:£nil).
Payments in respect of trustee indemnity insurance amounted to £398 (2022: £398).
| 10. STAFF COSTS | 2023 (£) | 2022 (£) |
|---|---|---|
| Wages and salaries | 461,860 | 391,466 |
| Social security costs | 43,784 | 34,664 |
| Pension | 20,476 | 17,288 |
| 526,120 | 443,418 | |
| THE AVERAGE MONTHLY NUMBER OF EMPLOYEES DURING THE YEAR WAS AS FOLLOWS: |
2023 | 2022 |
| Management and administration | 1 | 1 |
| Direct charitable expenditure | 10 | 10 |
| Fundraising and publicity | 5 | 5 |
| 16 | 16 |
We also engaged contractors in 2023 to assist us with our management and administration 1.2 FTE.
No employees received emoluments in excess of £60,000 (2022: None)
11. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES
| Unrestricted | Restricted | Total Funds | |
|---|---|---|---|
| funds (£) | funds (£) | (£) | |
| INCOME AND ENDOWMENTS FROM | |||
| Donations and legacies | 579,516 | 255,080 | 834,596 |
| Other trading activities | 4,694 | - | 4,694 |
| Investment income | 130 | - | 130 |
| TOTAL | 584,340 | 255,080 | 839,420 |
| EXPENDITURE ON | |||
| Raising funds | 161,871 | - | 161,871 |
| CHARITABLE ACTIVITIES | |||
| Provision of support | 153,498 | 226,022 | 379,520 |
| Governance costs | 68,228 | - | 68,228 |
| Research related activity | 95,847 | 10,000 | 105,847 |
| TOTAL | 479,444 | 236,022 | 715,466 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
| Unrestricted | Restricted | Restricted | Total Funds | ||
|---|---|---|---|---|---|
| funds (£) | funds (£) | (£) | |||
| NET INCOME | 104,896 | 19,058 | 123,954 | ||
| RECONCILIATION OF FUNDS | |||||
| Total funds brought forward | 443,941 | 21,269 | 465,210 | ||
| TOTAL FUNDS CARRIED FORWARD | 548,837 | 40,327 | 589,164 | ||
| 12. TANGIBLE | Office | Database | Computer | Totals | |
| FIXED ASSETS | Equipment (£) | (£) | Equipment (£) | (£) | |
| COST | |||||
| At 1 April 2022 | 2,554 | 31,312 | 18,468 | 18,468 | |
| Additions | - | - | 2,395 | 2,395 | |
| At 31 March 2023 | 2,554 | 31,312 | 20,863 | 54,729 | |
| DEPRECIATION | 1,391 | 31,312 | 11,515 | 44,218 | |
| At 1 April 2022 | 159 | - | 3,315 | 3,474 | |
| Charge for year | |||||
| At 31 March 2023 | 1,550 | 31,312 | 14,830 | 47,692 | |
| NET BOOK VALUE | |||||
| At 1 April 2023 | 1,004 | - | 6,033 | 7,037 | |
| At 31 March 2022 | 1,163 | - | 6,953 | 8,116 | |
| 13. STOCKS | 2023 (£) | 2022 (£) | |||
| Stocks held for re-sale | 5,791 | 6,285 | |||
| 14. DEBTORS: AMOUNTS FALLING | 2023 (£) | 2022 (£) | |||
| DUE WITHIN ONE YEAR | |||||
| Prepayments and accrued income | 36,117 | 15,239 | |||
| CREDITORS: AMOUNTS FALLING | 2023 (£) | 2022 (£) | |||
| DUE WITHIN ONE YEAR | |||||
| Social security and other taxes | 14,555 | 14,869 | |||
| Other creditors | 921 | 3,810 | |||
| Accrued expenses | 5,199 | 13,001 | |||
| 20,675 | 31,680 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
| 16. LEASING AGREEMENTS | 16. LEASING AGREEMENTS | 2022 (£) 2023 (£) |
2022 (£) 2023 (£) |
2022 (£) 2023 (£) |
|
|---|---|---|---|---|---|
| Minimum lease payments under non-cancellable | |||||
| operating leases fall due as follows: | |||||
| Within one year | 20,094 | 21,150 | |||
| Between one and five years | 22,500 | 45,146 | |||
| 42,594 66,296 |
|||||
| 17, MOVEMENT | At | 1.4.22 | Net Movement | Transfer between | At 31.3.23 |
| IN FUNDS | (£) | in funds (£) | funds (£) | (£) | |
| Unrestricted funds | |||||
| General fund | 548,837 | 16,510 | (367) | 564,980 | |
| Restricted funds | |||||
| Various | 40,327 | 50,640 | 367 | 91,334 | |
| TOTAL FUNDS | 589,164 | 67,150 | - | 656,314 | |
| Net movement in funds, included in the above are as follows: | |||||
| Incoming | Resources | Movement | |||
| resources(£) | expended (£) | in funds (£) | |||
| Unrestricted funds | |||||
| General fund | 429,458 | (412,948) | 16,510 | ||
| Restricted funds | |||||
| General fund | 495,215 | (444,575) | 50,640 | ||
| TOTAL FUNDS | 924,673 | (857,523) | 67,150 | ||
| COMPARATIVES FOR MOVEMENT IN FUNDS | |||||
| At 1.4.21 | Net Movement | At 31.3.22 | |||
| (£) | in funds (£) | (£) | |||
| Unrestricted funds | |||||
| General fund | 443,941 | 104,896 | 548,837 | ||
| Restricted funds | |||||
| General fund | 21,269 | 19,058 | 40,327 | ||
| TOTAL FUNDS | 465,210 | 123,954 | 589,164 | ||
| Incoming | Resources | Movement | |||
| resources (£) | expended (£) | in funds (£) | |||
| Unrestricted funds | |||||
| General fund | 584,340 | (479,444) | 104,896 | ||
| Restricted funds | |||||
| General fund | 255,080 | (236,022) | 19,058 | ||
| TOTAL FUNDS | 839,420 | (715,466) | 123,954 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
A current year 12 months and prior year 12 months combined position is as follows:
| At 1.4.21 | Net | Movement | Transfer between At 31.3.23 |
Transfer between At 31.3.23 |
Transfer between At 31.3.23 |
Transfer between At 31.3.23 |
|
|---|---|---|---|---|---|---|---|
| (£) | in | funds (£) | funds (£) | (£) | |||
| Unrestricted funds | |||||||
| General fund | 443,941 | 121,406 | (367) | 564,980 | |||
| Restricted funds | |||||||
| Various | 21,269 | 69,698 | 367 | 91,334 | |||
| TOTAL FUNDS | 465,210 | 191,104 | - | 656,314 | |||
| A current year 12 months and prior year 12 months combined net movement in funds, included | |||||||
| in the above are as follows: | |||||||
| Incoming | Resources | Movement | |||||
| resources (£) | expended (£) | in funds (£) | |||||
| Unrestricted funds | |||||||
| General fund | 1,013,798 | (892,392) | 121,406 | ||||
| Restricted funds | |||||||
| General fund | 750,295 | (680,597) | 69,698 | ||||
| TOTAL FUNDS | 1,764,093 | (1,572,989) | 191,104 | ||||
| Balance b/f | Incoming | Resources | Funds | Balance c/f | |||
| STATEMENT OF FUNDS | at 1.4.22 | Resources | Expended | Transfer | at | 31.3.23 | |
| £ | £ | £ | £ | £ | |||
| Unrestricted funds | |||||||
| General funds | 548,837 | 429,458 | (412,948) | (367) | 564,980 | ||
| Restricted funds | |||||||
| Support into the 2020s: | |||||||
| - Lotteries Reaching Communities | 28,669 | - | (28,669) | - | - | ||
| - Other Grants | 10,000 | - | (10,000) | - | - | ||
| Toy Packs | 350 | 500 | (350) | - | 500 | ||
| Flexible Response Grants | - | - | (200) | 200 | - | ||
| Support Work with Families in Scotland | - | 500 | (500) | - | - | ||
| UK SMA Newborn Screening Alliance | - | 106,734 | (101,335) | - | 5,399 | ||
| SMA Horizons Project | - | 1,080 | (317) | - | 763 | ||
| Working with the SMA Community | |||||||
| through Covid & Beyond - England | - | 153,831 | (85,432) | - | 68,399 | ||
| Working with the SMA Community | |||||||
| through Covid & Beyond - UK | - | 150,000 | (150,000) | - | - | ||
| Website & Digital Comms Development | - | 57,570 | (51,297) | - | 6,273 | ||
| Support Services | - | 15,000 | (15,000) | - | - | ||
| PhD Scholarship Yr2 | - | 10,000 | - | - | 10,000 | ||
| Northern Ireland Events | 1,308 | - | (1,475) | 167 | - | ||
| TOTAL RESTRICTED FUNDS | 40,327 | 495,215 | (444,575) | 367 | 91,334 | ||
| TOTAL FUNDS | 589,164 | 924,673 | (857,523) | - | 656,314 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
ANALYSIS OF NET ASSETS BETWEEN FUNDS
| Unrestricted | Restricted | Total Funds | |
|---|---|---|---|
| funds (£) | funds (£) | (£) | |
| Fund balances at 31 March 2023 | |||
| are represented by: | |||
| Tangible fixed assets | 7,037 | - | 7,037 |
| Stock | 5,791 | - | 5,791 |
| Debtors | 36,117 | - | 36,117 |
| Bank and cash | 536,710 | 91,334 | 628,044 |
| Current liabilities | (20,675) | - | (20,675) |
| TOTAL NET ASSETS | 564,980 | 91,334 | 656,314 |
Support into the 2020s
This includes many of the services and workstreams described in the section, 'Achievements and Performance': information production, outreach, support and advocacy work and the organising of community networks and events and advocacy.
It s funded by :
Lotteries Reaching Communities
This is a 3 year grant (June 2019 - May 2022) to cover 50% of the costs of our 'Support into the 2020s services in England.
Support into the 2020s-Other
Combines donations from Trusts and restricted community donations towards the remaining costs across the UK.
Toy Packs
Our multi-sensory toy packs are available free of charge to families in the UK for newly diagnosed children.They include items that provide visual, tactile and auditory stimulation. They have been designed to offer entertainment during the day, fun at bath time and comfort at bedtime. They are suitable for infants aged up to 12 months of age.
Flexible Response Grants
This fund provides a swift response to an urgent need when no other funding source is available. It may also assist people with travel and subsistence costs when they access treatments. Grants are typically small.
Support with Families in Scotland
A fund that helped to cover the costs of our support work in Scotland.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
UK SMA Newborn Screening Alliance
The Alliance brings together clinicians, patient groups and other stakeholders, determined to achieve the earliest possible introduction of newborn screening for SMA in the UK and in so doing deliver the best outcomes from treatment and
reduce future healthcare costs. This fund supports the costs of the Project Manager, the secretariat (SMA UK and MDUK) and communications.
SMA Horizons Project
The SMArt Horizon project has the goal to identify new innovation, 'out of the box' therapies for people living with SMA, especially for the chronic population. Thesetherapies may be complementary to the existing ones that target the SMN upregulation.
Working with the SMA Community Through Covid & Beyond- England
This Fund, provided by the National Lotteries, supports our information, outreach and support , community development and advocacy services. The 2022/3 grant was the first year of a 4 year grant (September 2022 - August 2026) making a significant contribution to the costs of these services. Contributions from Lotteries will reduce over the 4 year period.
Working with the SMA Community Through Covid & Beyond-UK
This Fund goes towards the costs of our information, outreach and support , community development and advocacy services that are not covered by the National Lotteries grant.
Website & Digital Comms Development
This year this fund was set up to enable the launch of a new website and branding refresh targeted for August 2023. It also increased our Communications staffing capacity, our communications reach and supported the further development of community virtual networks.
Support Services
This fund targeted any Support Services costs that were not covered by any of the other restricted funds that support this work.
Northern Ireland Events
This fund enables us to offer events in Northern Ireland for adults, children and young people with SMA and their families. These provide opportunities to share experiences and connect up with others in the SMA Community.
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
PhD Scholarship Yr2
This supports our commitment to fund the 4-year research programme that aims to further understand the motor enlargement process in people who have SMA and how this might be addressed and improve treatment outcomes. It runs from 20222025, and is funded jointly with Muscular Dystrophy UK.
18. RELATED PARTY DISCLOSURES
There were no related party transactions for the year ended 31 March 2023.
19. CHARITY STRUCTURE
On 4th August 2022 the charity changed from a 'company limited by guarantee' to a 'charitable incorporated organization'.
DETAILED STATEMENT OF FINANCIAL ACTIVITIES
for the Year Ended 31 March 2023
| 2023 (£) | 2022 (£) | |
|---|---|---|
| INCOME AND ENDOWMENTS | ||
| Donations and gifts | ||
| Donations and gifts | 759,199 | 680,272 |
| Legacies | 5,312 | 25,000 |
| The National Lottery Community Fund | 153,831 | 129,324 |
| Other trading activities | ||
| Merchandise sales | 5,743 | 4,694 |
| Investment income | ||
| Bank interest | 588 | 130 |
| TOTAL INCOMING RESOURCES | 924,673 | 839,420 |
| 2023 (£) | 2022 (£) | |
| EXPENDITURE | ||
| Raising donations and legacies | ||
| Staff costs and other expenses | 133,680 | 94,642 |
| Fundraising and publicity | 21,090 | 25,817 |
| Events and promotions | 12,304 | 38,702 |
| Cost of merchandise sales | 2,337 | 2,710 |
| 169,411 | 161,871 |
SPINAL MUSCULAR ATROPHY UK | ANNUAL REPORT | 2022 - 2023
| 2023 (£) | 2022 (£) | |
|---|---|---|
| Charitable activities | ||
| Staff costs and other expenses | 391,507 | 342,135 |
| Medical research grants | 378 | 35,072 |
| Other research activities | 3,099 | 6,352 |
| Information and awareness raising | 34,641 | 7,465 |
| Shared experiences network | 24,045 | 27,048 |
| Outreach service | 48,285 | 37,923 |
| Welfare, equipment grants and toy packs | 121,184 | 29,372 |
| 623,139 | 485,367 | |
| Support costs | ||
| Management | ||
| Staff costs and other expenses | 51,285 | 48,301 |
| Professional fees and bank charges | 6,478 | 8,939 |
| Other costs | 7,210 | 10,988 |
| 64,973 | 68,228 | |
| TOTAL RESOURCES EXPENDED | 857,523 | 715,466 |
| NET INCOME | 67,150 | 123,954 |
Address: Unit 9, Shottery Brook Office Park. Timothy’s Bridge Road, Stratford-Upon-Avon, Warwickshire, CV37 9NR Office@smauk.org.uk | 01789 267520
Registered Charity Number 1106815