REGISTERED CHARITY NUMBER: 1140671
Report of the Trustees and Financial Statements for the Year Ended 31 March 2025
for
Noonan Syndrome Association
Morgan Griffiths LLP Chartered Accountants Cross Chambers
9 High Street Newtown Powys SY16 2NY
Noonan Syndrome Association
Contents of the Financial Statements for the Year Ended 31 March 2025
| Page | |||
|---|---|---|---|
| Reference and Administrative Details | 1 | ||
| Report of the Trustees | 2 | to | 4 |
| Independent Examiner's Report | 5 | ||
| Statement of Financial Activities | 6 | ||
| Balance Sheet | 7 | ||
| Notes to the Financial Statements | 8 | to | 12 |
| Detailed Statement of Financial Activities | 13 |
Noonan Syndrome Association
Reference and Administrative Details for the Year Ended 31 March 2025
TRUSTEES Sharon Allsopp Chair of Trustees Andrea Reid - Kelly Deputy Chair Grayson Bowler Treasurer Michael Patton Medical Adviser (resigned 13.7.24) Brian Carlton Jeanette Dyer Ian Legg Emma Burkitt-Wright Medical advisor (appointed 13.7.24) Susan Miller (appointed 13.8.24) PRINCIPAL ADDRESS The Marshal Room 23-25 Old Row Whalley Road Barrow Lancashire BB7 9AZ REGISTERED CHARITY 1140671 NUMBER INDEPENDENT EXAMINER Morgan Griffiths LLP Chartered Accountants Cross Chambers 9 High Street Newtown Powys SY16 2NY BANKERS CAF Bank Ltd 25 Kings Hill Avenue Kings Hill West Malling Kent ME19 4JQ
Charity Manager Sandie Dent Correspondence Address The Marshal Room 23-25 Old Row Whalley Road Barrow Lancashire BB7 9AZ
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Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2025
The trustees present their report with the financial statements of the charity for the year ended 31 March 2025. 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
The objectives of the charity are to provide relief of all persons affected by Noonan Syndrome and related conditions (on the Ras/MAPK pathway) by all or any of the following means:
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The provision of general advice, guidance and support services for persons affected by Noonan Syndrome and related conditions (on the Ras/MAPK pathway), their families, dependents and carers;
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The facilitation and promotion of research into the causes, effects, diagnosis, treatment and relief of Noonan Syndrome and related conditions (on the Ras/MAPK pathway) with the useful results of research being disseminated for the benefit of the public;
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The advancement in the education of the public in relation to the effects of Noonan Syndrome and related conditions (on the Ras/MAPK pathway) by communicating reports and disseminating information by any means or media concerning research work and studies undertaken by or on behalf of the charity.
In all that we do, our trustees have given careful consideration to the Charity Commission's general guidance on public benefit and have complied with the duty in section 4 of the 2011/2006 Charities Act.
ACHIEVEMENTS AND PERFORMANCE
Charitable activities
The Charity entered the year in a stable financial position, though with a recognition that regular giving and fundraising income streams were down on previous years.
During the financial year, the charity's Medical Advisor Trustee and co-founder, Prof. Michael Patton, retired and the charity welcomed Dr Emma Burkitt-Wright as the new Medical Advisor Trustee. Dr Burkitt-Wright has a long-standing relationship with the charity as a member of the Professional Advisory Group.
Sue Miller, a volunteer with a long-standing connection to the charity, also joined the board as a coopted trustee, bringing the total trustees during the 2024-5 year to eight.
Support activities during the year included a Families Day & Conference with renowned guest speakers, themed webinars and updates to the associated factsheet resources, continued support from a wide range of complex member enquiries, production of regular informative newsletters and dissemination of findings from the Living with Noonan Syndrome research project, carried out in collaboration with Loughborough University.
Governance and operational activities included board reviews of the 3 year strategy, including detailed assessment of the cost/benefit of holding large Families and Conference weekend events. The Board is keen to find alternative options, to ensure more cost-effective and inclusive support for members, and a detailed options plan was drawn up to feed into the strategic planning process.
The year presented income generating challenges with a fall in regular giving and difficulties securing grant funding in a challenging funding landscape. Although income was slightly up on the previous year, it is down on earlier years. Strategic planning identified a priority around communications campaigns to support donations and member fundraising, in particular targeted professional campaigns around regular giving, and this is planned as a focus for the coming year.
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Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2025
FINANCIAL REVIEW
Financial position
The statement of Financial Activities shows a deficit for the year of £33,326 (2024: £17,905), and reserves now stand at £46,560 (2024: £79,886).
Reserves policy
The charity does not have a separate formal policy on Reserves but following Board discussions, the Chair, Treasurer and Charity Manager follow a policy based on achieving free reserves of a minimum of between 3 and 6 months' operating costs including those associated with the cost of a part time charity manager.
The charity has an established and appropriate financial management system which is regularly reviewed by the Board and put into day to day practice by the Charity Manager, Charity Treasurer, Finance Officer together with the Chair of Trustees.
Free reserves which equate to net current assets (excluding restricted funds) amount to £45,472 (2024: £59,278).
FUTURE PLANS
To further strengthen the board and, in particular, seek trustees with experience in finance, marketing and communications where possible to support the strategic plan, including the development of professional fundraising campaigns.
To review and update membership of the Professional Advisory Group to strengthen this resource with the addition of new medical professionals and inclusion of non-medical professionals with expertise valuable to the charity's membership.
Increase in the range of webinar topics, to include small group online support sessions such as an Educational Transitions small group session planned for early 2025-6. To continue providing medical topic webinars, starting with a Growth webinar and updated Growth Factsheet in Q1.
To hold a one-day regional conference with guest speakers and workshop sessions in place of the larger weekend families day event and hold these at locations across the UK, beginning with Manchester in 2025-6.
Create a new Multi-Agency subgroup to focus on non-medical support areas such as education and other social care projects highlighted as important to members. To explore how to provide new and existing support in the most inclusive and cost-effective ways.
Continue to support research projects and the dissemination of the new International guidelines for NS due to be completed in 2025-6. To better understand and develop relationships with other agencies for collaboration, shared dissemination and awareness raising.
STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document
The charity is controlled by its governing document, a deed of trust and constitutes an unincorporated charity.
Recruitment and appointment of new trustees
Trustees are elected by way of a resolution of the Charity at the Annual General Meeting. The Trustees also have the power at any time, and from time to time, to appoint any person to be a Trustee [subject to certain restrictions], either to fill a casual vacancy or as an addition to the existing members of the Board of Trustees but so that the total number of Trustees does not exceed any maximum number fixed in accordance with this Constitution. Any Trustee so appointed shall hold office only until the next following Annual General Meeting, and shall then be eligible for re-election.
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Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2025
STRUCTURE, GOVERNANCE AND MANAGEMENT
Organisational structure
The charity is organised so that the trustees meet regularly to manage its affairs. Full Trustee Board meetings are held at least four times per year with other meetings held as required, both face to face and by conference call or internet.
There is an Annual General Meeting held for all the members of the charity at which Trustees are elected or confirmed.
The part time Charity Manager undertakes most of the day to day operations of the charity. In addition to a Chair, the trustees have appointed a Deputy Chair and a Treasurer.
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. It has an agreed set of financial procedures and policies, practices and guidance to cover its activities, including the reserves policy set out above.
Approved by order of the board of trustees on 24 January 2026 and signed on its behalf by:
Sharon Allsopp - Trustee
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Independent Examiner's Report to the Trustees of Noonan Syndrome Association
Independent examiner's report to the trustees of Noonan Syndrome Association
I report to the charity trustees on my examination of the accounts of Noonan Syndrome Association (the Trust) for the year ended 31 March 2025.
Responsibilities and basis of report
As the charity trustees of the Trust you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the Act').
I report in respect of my examination of the Trust's accounts carried out under Section 145 of the Act and in carrying out my examination I have followed all applicable Directions given by the Charity Commission under Section 145(5)(b) of the Act.
Independent examiner's statement
I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
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accounting records were not kept in respect of the Trust as required by Section 130 of the Act; or
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the accounts do not accord with those records; or
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the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
Thomas Landers BA FCA
Morgan Griffiths LLP Chartered Accountants Cross Chambers 9 High Street Newtown Powys SY16 2NY
24 January 2026
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Noonan Syndrome Association
Statement of Financial Activities for the Year Ended 31 March 2025
| Unrestricted Restricted fund funds Notes £ £ INCOME AND ENDOWMENTS FROM Donations and legacies 2 35,598 11,980 Investment income 3 489 - Total 36,087 11,980 EXPENDITURE ON Charitable activities 4 Research 6,306 20,000 Support Network 32,132 11,500 Awareness 11,455 - Total 49,893 31,500 NET INCOME/(EXPENDITURE) (13,806) (19,520) RECONCILIATION OF FUNDS Total funds brought forward 59,278 20,608 TOTAL FUNDS CARRIED FORWARD 45,472 1,088 |
31.3.25 31.3.24 Total Total funds funds £ £ 47,578 30,374 489 53 48,067 30,427 26,306 25,677 43,632 11,322 11,455 11,333 81,393 48,332 (33,326) (17,905) 79,886 97,791 46,560 79,886 |
|---|---|
The notes form part of these financial statements
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Noonan Syndrome Association
Balance Sheet 31 March 2025
| Notes CURRENT ASSETS Debtors 9 Cash at bank CREDITORS Amounts falling due within one year 10 NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES NET ASSETS FUNDS 12 Unrestricted funds Restricted funds TOTAL FUNDS |
31.3.25 £ 3,407 44,123 47,530 (970) 46,560 46,560 46,560 45,472 1,088 46,560 |
31.3.24 £ 28,901 70,396 99,297 (19,411) 79,886 79,886 79,886 59,278 20,608 79,886 |
|---|---|---|
The financial statements were approved by the Board of Trustees and authorised for issue on 24 January 2026 and were signed on its behalf by:
Sharon Allsopp - Trustee
The notes form part of these financial statements
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Noonan Syndrome Association Notes to the Financial Statements for the Year Ended 31 March 2025
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 recognition
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.
Taxation
The charity is exempt from 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 restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.
Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.
2. DONATIONS AND LEGACIES
| Donations Gift aid Grants Grants received, included in the above, are as follows: Novo Nordisk Limited Sense - The National Deafblind and Rubella Association |
31.3.25 £ 33,501 2,577 11,500 47,578 31.3.25 £ 3,000 8,500 11,500 |
31.3.24 £ 27,784 2,590 - |
|---|---|---|
| 30,374 | ||
| 31.3.24 £ - - |
||
| - |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2025
| 3. INVESTMENT INCOME 31.3.25 £ Deposit account interest 54 Other interest 435 489 4. CHARITABLE ACTIVITIES COSTS Direct Support Costs (see costs (see note 5) note 6) £ £ Research 25,578 728 Support Network 42,905 727 Awareness 11,154 301 79,637 1,756 5. DIRECT COSTS OF CHARITABLE ACTIVITIES 31.3.25 £ Postage and stationery 529 Promotional material 84 Family day 31,828 Travel expenses 771 Computer & IT support costs 2,619 Charity Manager 17,933 Research 20,000 Administration costs 5,873 Staff & volunteer training - 79,637 6. SUPPORT COSTS Governance Finance costs £ £ Research 28 700 Support Network 54 673 Awareness 54 247 136 1,620 |
31.3.24 £ 53 - 53 Totals £ 26,306 43,632 11,455 |
31.3.24 £ 53 - 53 Totals £ 26,306 43,632 11,455 |
|---|---|---|
| 81,393 | ||
| 31.3.24 £ 1,350 450 - 595 1,949 16,747 20,000 5,388 198 |
||
| 46,677 | ||
| Totals £ 728 727 301 |
||
| 1,756 |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2025
7. TRUSTEES' REMUNERATION AND BENEFITS
There were no trustees' remuneration or other benefits for the year ended 31 March 2025 nor for the year ended 31 March 2024.
Trustees' expenses
During the year no trustees were reimbursed for travelling expenses ( 2024 - nil).
8. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES
| Unrestricted fund £ INCOME AND ENDOWMENTS FROM Donations and legacies 30,044 Investment income 53 Total 30,097 EXPENDITURE ON Charitable activities Research 5,677 Support Network 11,322 Awareness 11,333 Total 28,332 NET INCOME/(EXPENDITURE) 1,765 RECONCILIATION OF FUNDS Total funds brought forward 57,513 TOTAL FUNDS CARRIED FORWARD 59,278 9. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR Trade debtors Accrued income Prepayments |
Restricted funds £ 330 - 330 20,000 - - 20,000 (19,670) 40,278 20,608 31.3.25 £ - 2,526 881 3,407 |
Total funds £ 30,374 53 30,427 25,677 11,322 11,333 48,332 (17,905) 97,791 79,886 31.3.24 £ 10 8,169 20,722 28,901 |
|---|---|---|
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2025
10. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
| 31.3.25 | 31.3.24 | ||||
|---|---|---|---|---|---|
| £ | £ | ||||
| Trade creditors | - | 900 | |||
| Other creditors | 970 | 18,511 | |||
| 970 | 19,411 | ||||
| 11. | ANALYSIS OF NET ASSETS BETWEEN FUNDS | ||||
| 31.3.25 | 31.3.24 | ||||
| Unrestricted | Restricted | Total | Total | ||
| fund | funds | funds | funds | ||
| £ | £ | £ | £ | ||
| Current assets | 46,442 | 1,088 | 47,530 | 99,297 | |
| Current liabilities | (970) | - | (970) | (19,411) | |
| 45,472 | 1,088 | 46,560 | 79,886 | ||
| 12. | MOVEMENT IN FUNDS | ||||
| Net | |||||
| movement | At | ||||
| At 1.4.24 | in funds | 31.3.25 | |||
| £ | £ | £ | |||
| Unrestricted funds | |||||
| General fund | 59,278 | (13,806) | 45,472 | ||
| Restricted funds | |||||
| Noonan Syndrome Research Fund | 10,585 | (9,504) | 1,081 | ||
| The Andrew Family Research Fund | 10,016 | (10,016) | - | ||
| Support costs | 7 | - | 7 | ||
| 20,608 | (19,520) | 1,088 | |||
| TOTAL FUNDS | 79,886 | (33,326) | 46,560 | ||
| Net movement in funds, included in the above are as follows: | |||||
| Incoming | Resources | Movement | |||
| resources | expended | in funds | |||
| £ | £ | £ | |||
| Unrestricted funds | |||||
| General fund | 36,087 | (49,893) | (13,806) | ||
| Restricted funds | |||||
| Noonan Syndrome Research Fund | 480 | (9,984) | (9,504) | ||
| Families Event | 11,500 | (11,500) | - | ||
| The Andrew Family Research Fund | - | (10,016) | (10,016) | ||
| 11,980 | (31,500) | (19,520) | |||
| TOTAL FUNDS | 48,067 | (81,393) | (33,326) |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2025
12. MOVEMENT IN FUNDS - continued
Comparatives for movement in funds
| Unrestricted funds General fund Restricted funds Noonan Syndrome Research Fund The Andrew Family Research Fund Support costs TOTAL FUNDS Comparative net movement in funds, included in the above are Unrestricted funds General fund Restricted funds Noonan Syndrome Research Fund TOTAL FUNDS |
Net movement At At 1.4.23 in funds 31.3.24 £ £ £ 57,513 1,765 59,278 30,255 (19,670) 10,585 10,016 - 10,016 7 - 7 40,278 (19,670) 20,608 97,791 (17,905) 79,886 as follows: Incoming Resources Movement resources expended in funds £ £ £ 30,097 (28,332) 1,765 330 (20,000) (19,670) 30,427 (48,332) (17,905) |
|---|---|
The Andrew Family Research Fund: This is to fund medical research directly relevant to Noonan Syndrome.
13. RELATED PARTY DISCLOSURES
During the year the trustees made donations to the charity totalling £1,691 2024: £1,440).
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Noonan Syndrome Association
Detailed Statement of Financial Activities for the Year Ended 31 March 2025
| 31.3.25 | 31.3.24 | |
|---|---|---|
| £ | £ | |
| INCOME AND ENDOWMENTS | ||
| Donations and legacies | ||
| Donations | 33,501 | 27,784 |
| Gift aid | 2,577 | 2,590 |
| Grants | 11,500 | - |
| 47,578 | 30,374 | |
| Investment income | ||
| Deposit account interest | 54 | 53 |
| Other interest | 435 | - |
| 489 | 53 | |
| Total incoming resources | 48,067 | 30,427 |
| EXPENDITURE | ||
| Charitable activities | ||
| Postage and stationery | 529 | 1,350 |
| Promotional material | 84 | 450 |
| Family day | 31,828 | - |
| Travel expenses | 771 | 595 |
| Computer & IT support costs | 2,619 | 1,949 |
| Charity Manager | 17,933 | 16,747 |
| Research | 20,000 | 20,000 |
| Administration costs | 5,873 | 5,388 |
| Staff & volunteer training | - | 198 |
| 79,637 | 46,677 | |
| Support costs | ||
| Finance | ||
| Bank charges | 136 | 61 |
| Governance costs | ||
| Indemnity insurance | 618 | 694 |
| Accountancy and legal fees | 1,002 | 900 |
| 1,620 | 1,594 | |
| Total resources expended | 81,393 | 48,332 |
| Net expenditure | (33,326) | (17,905) |
This page does not form part of the statutory financial statements
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