REGISTERED CHARITY NUMBER: 1140671
Report of the Trustees and Financial Statements for the Year Ended 31 March 2021
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 2021
| Page | |||
|---|---|---|---|
| Reference and Administrative Details | 1 | ||
| Report of the Trustees | 2 | to | 5 |
| Independent Examiner's Report | 6 | ||
| Statement of Financial Activities | 7 | ||
| Balance Sheet | 8 | ||
| Notes to the Financial Statements | 9 | to | 14 |
| Detailed Statement of Financial Activities | 15 |
Noonan Syndrome Association
Reference and Administrative Details for the Year Ended 31 March 2021
| TRUSTEES | Mrs K Ballard Chair |
|---|---|
| Miss S L Allsopp Deputy Chair | |
| S Hoey Treasurer | |
| Professor M A Patton FRCP Medical Adviser | |
| I A Legg BA (HONS) ACIB | |
| G Bowler (appointed 18.5.20) | |
| B Carlton | |
| Mrs J Dyer (appointed 18.5.20) | |
| Ms A Reid - Kelly | |
| Mrs G L Wilkes | |
| Ms A Swift (resigned 27.6.20) | |
| PRINCIPAL ADDRESS | PO Box 692 |
| Blackburn | |
| BB2 9RF | |
| REGISTERED CHARITY | 1140671 |
| NUMBER | |
| INDEPENDENT EXAMINER | Morgan Griffiths LLP |
| Chartered Accountants | |
| Cross Chambers | |
| 9 High Street | |
| Newtown | |
| Powys | |
| SY16 2NY | |
| BANKERS | Barclays Bank PLC |
| Leicester | |
| LE87 2BB | |
| Charity Manager | |
| Sandie Dent | |
| Correspondence Address | |
| PO Box 692, Blackburn, BB2 9RF |
Page 1
Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2021
The trustees present their report with the financial statements of the charity for the year ended 31 March 2021. 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:
-
The provision of general advice, guidance and support services for persons suffering from 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.
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Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2021
ACHIEVEMENT AND PERFORMANCE
Charitable activities
The challenges which the Covid-19 epidemic has brought were beginning to make themselves clear towards the end of the 2019/2020 year, most notably by influencing the Trustees to postpone the Families Day and Activities Weekend. The main brunt of the restrictions brought on by the pandemic was, however, felt in 2020/2021. With the continuing uncertainty and the vulnerability of many members, the Families event had yet again to be postponed and is now scheduled for early October 2022.
Similarly, with the medical profession's focus on Covid, it was deemed inappropriate to proceed with the next round of invitations for research pump-priming. This will now take place during the 2021/22 year.
On a more positive note, discussions continued on how the charity could support the new specialist Rasopathies clinic at Great Ormond Street Hospital. It was agreed that the NSA would fund the costs of a part time specialist nurse for the clinic in collaboration with One Great Day, the main sponsoring charity for the development. Despite the postponement of the actual London Marathon, NSA had great support in the virtual Marathon led by Matthew Legg, son of the outgoing Chair of the NSA, Ian Legg and which he was running in memory of his brother Mark who had Noonan Syndrome.
During the lockdown, NSA took the approach of signposting reliable NHS/HM Government advice to members and by careful management of resources, maintained a good level of income and fundraising to ensure that the charity could come through the pandemic in good financial health. This was helped in no small way by the generous support received from members and particularly from Novo Nordisk who funded 6 months staff resource for the charity. Thanks must also go to Huddersfield Golf Club as NSA was their chosen charity which resulted in a donation of £4.75k.
The year also heralded notable changes in the management of the charity. Ian Legg, the chair of the charity from its inception announced that he would be standing down after 10 years. Longstanding trustee Katie Ballard took over as Chair towards the end of 2020 and one of her first tasks was to start the recruitment process for the role of Charity Manager as Peter Clarke, who had also been in that post for a decade, said that he would be looking to retire. After a recruitment made more challenging because of the pandemic restrictions, Sandie Dent was confirmed as taking up the role from early March 2021, although Peter would be staying on for some time in support.
The appointment of a new Chair provided the opportunity for the charity to look again at its aims and direction. A membership survey enabled the charity to collate the views of its major stakeholders, trustees and members on its key aims and vision. Trends in responses were identified and these were incorporated into a new 15-month plan for the charity as the year came to a close. The new developments are covered in more detail below.
FINANCIAL REVIEW
Financial position
The statement of Financial Activities shows a surplus for the year of £32,321(2020: £554), and reserves now stand at £94,177 (2020: £61,856).
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 £67,506 (2020: £51,840).
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Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2021
FUTURE PLANS
The NSA, as with many other charities, faced uncertainty at the start of 2020/21 as the Covid-19 pandemic took hold. Because of the vulnerable status of members and some trustees, face-to-face activities could not be delivered even outside of government-mandated lockdowns. Plans for 2020/21 were changed, and continued to change throughout the year, but the overall priorities and aims of the charity did not. A key strength of the Board during this year has been its ability to revise plans to navigate that uncertain and changing landscape, whilst maintaining the core objective of supporting members and planning for the future.
Future plans include:
-
delivering a series of online medical webinars during 2021 in place of the Families Weekend; - funding two clinical research projects and one social research project;
-
taking advantage of the charity's robust financial position to improve systems and processes, including
-
investing in new technology; and
-
further developing the charity's strategic plan.
Key strategic objectives include increasing membership, income and diversity of income, and increasing the range of support activities available to members (i.e. holding regional events). As the charity's membership grows, so the activities and resource to deliver them need also to grow. Managing this growth in a safe and positive way will be a key focus during 2021/22.
At the time of writing this report, we are now 21 months into the pandemic and still navigating an uncertain landscape. Reflecting back on the 2020/21 year and achievements the charity made despite the difficult environment, it is clear that the solid financial position at the start of the reporting period put the charity in a strong position to survive, adapt, and even thrive during the challenging year to come.
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.
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, Sharon Allsopp, and a Treasurer, Steve Hoey
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.
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Noonan Syndrome Association
Report of the Trustees for the Year Ended 31 March 2021
Approved by order of the board of trustees on 22 January 2022 and signed on its behalf by:
Mrs K Ballard - Trustee
Page 5
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 2021.
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:
-
accounting records were not kept in respect of the Trust as required by section 130 of the Act; or
-
the accounts do not accord with those records; or
-
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 Institute of Chartered Accountants in England & Wales Morgan Griffiths LLP Chartered Accountants Cross Chambers 9 High Street Newtown Powys SY16 2NY
22 January 2022
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Noonan Syndrome Association
Statement of Financial Activities for the Year Ended 31 March 2021
| Unrestricted Restricted fund funds Notes £ £ INCOME AND ENDOWMENTS FROM Donations and legacies 2 38,821 1,655 Charitable activities 3 Support Network - 25,820 Total 38,821 27,475 EXPENDITURE ON Charitable activities 4 Research 3,384 - Support Network 11,872 10,820 Awareness 7,899 - Total 23,155 10,820 NET INCOME 15,666 16,655 RECONCILIATION OF FUNDS Total funds brought forward 51,840 10,016 TOTAL FUNDS CARRIED FORWARD 67,506 26,671 |
31.3.21 31.3.20 Total Total funds funds £ £ 40,476 52,160 25,820 - 66,296 52,160 3,384 3,699 22,692 39,268 7,899 8,639 33,975 51,606 32,321 554 61,856 61,302 94,177 61,856 |
31.3.21 31.3.20 Total Total funds funds £ £ 40,476 52,160 25,820 - 66,296 52,160 3,384 3,699 22,692 39,268 7,899 8,639 33,975 51,606 32,321 554 61,856 61,302 94,177 61,856 |
|---|---|---|
| 52,160 3,699 39,268 8,639 |
||
| 51,606 | ||
| 554 61,302 |
||
| 61,856 |
The notes form part of these financial statements
Page 7
Noonan Syndrome Association
Balance Sheet 31 March 2021
| Notes CURRENT ASSETS Debtors 10 Cash at bank CREDITORS Amounts falling due within one year 11 NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES NET ASSETS FUNDS 13 Unrestricted funds Restricted funds TOTAL FUNDS |
31.3.21 £ 10,911 83,986 94,897 (720) 94,177 94,177 94,177 67,506 26,671 94,177 |
31.3.20 £ 10,058 52,602 62,660 (804) 61,856 61,856 61,856 51,840 10,016 61,856 |
|---|---|---|
The financial statements were approved by the Board of Trustees and authorised for issue on 22 January 2022 and were signed on its behalf by:
K Ballard - Trustee
The notes form part of these financial statements
Page 8
Noonan Syndrome Association Notes to the Financial Statements for the Year Ended 31 March 2021
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.
Grants offered subject to conditions which have not been met at the year end date are noted as a commitment but not accrued as expenditure.
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 |
31.3.21 £ 38,023 2,453 40,476 |
31.3.20 £ 50,397 1,763 |
|---|---|---|
| 52,160 |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2021
3. INCOME FROM CHARITABLE ACTIVITIES
| Activity Grants Support Network Grants received, included in the above, are as follows: Vinci UK Foundation Novo Nordisk Limited 4. CHARITABLE ACTIVITIES COSTS Direct Costs (see note 5) £ Research 3,146 Support Network 14,153 Awareness 7,342 24,641 5. DIRECT COSTS OF CHARITABLE ACTIVITIES Telephone Postage and stationery Promotional material Sundries Family day Travel expenses Computer & IT support costs Charity Manager Administration costs |
31.3.21 £ 25,820 31.3.21 £ 15,000 10,820 25,820 Grant funding of activities Support (see note costs (see 6) note 7) £ £ - 238 7,743 796 - 557 7,743 1,591 31.3.21 £ 895 2,584 - 640 165 296 70 16,491 3,500 24,641 |
31.3.20 £ - |
|---|---|---|
| 31.3.20 £ - - |
||
| - | ||
| Totals £ 3,384 22,692 7,899 |
||
| 33,975 | ||
| 31.3.20 £ 960 3,040 1,737 1,267 26,927 368 1,003 14,425 - |
||
| 49,727 |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2021
6. GRANTS PAYABLE
31.3.21 31.3.20 £ £ - Support Network 7,743 The total grants paid to institutions during the year was as follows: 31.3.21 31.3.20 £ £ - Great Ormond Street Hospital 7,743
7. SUPPORT COSTS
| Governance | Governance | ||
|---|---|---|---|
| costs | |||
| £ | |||
| Research | 238 | ||
| Support Network | 796 | ||
| Awareness | 557 | ||
| 1,591 | |||
| Activity | Basis of allocation | ||
| Management | Based on time | ||
| Governance costs | Based on time |
8. TRUSTEES' REMUNERATION AND BENEFITS
There were no trustees' remuneration or other benefits for the year ended 31 March 2021 nor for the year ended 31 March 2020.
Trustees' expenses
During the year one trustee was reimbursed for travelling expenses amounting to £198 (2020 nil).
9. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES
| Unrestricted Restricted fund funds £ £ INCOME AND ENDOWMENTS FROM Donations and legacies 52,160 - EXPENDITURE ON Charitable activities Research 3,699 - Support Network 28,768 10,500 Awareness 8,639 - Total 41,106 10,500 NET INCOME/(EXPENDITURE) 11,054 (10,500) |
Total funds £ 52,160 3,699 39,268 8,639 |
|---|---|
| 51,606 | |
| 554 |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2021
| 9. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued Unrestricted Restricted fund funds £ £ RECONCILIATION OF FUNDS Total funds brought forward 40,786 20,516 TOTAL FUNDS CARRIED FORWARD 51,840 10,016 10. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 31.3.21 £ Prepayments and accrued income 2,453 Prepayments 8,458 10,911 11. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 31.3.21 £ Other creditors 720 12. ANALYSIS OF NET ASSETS BETWEEN FUNDS 31.3.21 Unrestricted Restricted Total fund funds funds £ £ £ Current assets 68,226 26,671 94,897 Current liabilities (720) - (720) 67,506 26,671 94,177 13. MOVEMENT IN FUNDS Net movement At 1.4.20 in funds £ £ Unrestricted funds General fund 51,840 15,666 Restricted funds Noonan Syndrome Research Fund - 1,655 Families Event - 15,000 The Andrew Family Research Fund 10,016 - 10,016 16,655 TOTAL FUNDS 61,856 32,321 |
Total funds £ 61,302 61,856 31.3.20 £ 1,763 8,295 10,058 31.3.20 £ 804 31.3.20 Total funds £ 62,660 (804) 61,856 At 31.3.21 £ 67,506 1,655 15,000 10,016 26,671 94,177 |
Total funds £ 61,302 |
|---|---|---|
| 61,856 |
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2021
13. MOVEMENT IN FUNDS - continued
Net movement in funds, included in the above are as follows:
| Unrestricted funds General fund Restricted funds Noonan Syndrome Research Fund Families Event Support costs TOTAL FUNDS |
Incoming Resources Movement resources expended in funds £ £ £ 38,821 (23,155) 15,666 1,655 - 1,655 15,000 - 15,000 10,820 (10,820) - 27,475 (10,820) 16,655 66,296 (33,975) 32,321 |
Incoming Resources Movement resources expended in funds £ £ £ 38,821 (23,155) 15,666 1,655 - 1,655 15,000 - 15,000 10,820 (10,820) - 27,475 (10,820) 16,655 66,296 (33,975) 32,321 |
|---|---|---|
| 16,655 | ||
| 32,321 |
Comparatives for movement in funds
| Unrestricted funds General fund Restricted funds The Andrew Family Research Fund Eve Martin Fund The National Lottery TOTAL FUNDS Comparative net movement in funds, included in the above are Unrestricted funds General fund Restricted funds Eve Martin Fund The National Lottery TOTAL FUNDS |
Net movement At At 1.4.19 in funds 31.3.20 £ £ £ 40,786 11,054 51,840 10,016 - 10,016 500 (500) - 10,000 (10,000) - 20,516 (10,500) 10,016 61,302 554 61,856 as follows: Incoming Resources Movement resources expended in funds £ £ £ 52,160 (41,106) 11,054 - (500) (500) - (10,000) (10,000) - (10,500) (10,500) 52,160 (51,606) 554 |
At 31.3.20 £ 51,840 10,016 - - |
|---|---|---|
| 10,016 | ||
| 61,856 | ||
| (10,500) | ||
| 554 |
The Andrew Family Research Fund:
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Noonan Syndrome Association
Notes to the Financial Statements - continued for the Year Ended 31 March 2021
13. MOVEMENT IN FUNDS - continued
This is to fund medical research directly relevant to Noonan Syndrome.
14. RELATED PARTY DISCLOSURES
During the year the trustees made donations to the charity totalling £2,053 (2020: £3,430).
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Noonan Syndrome Association
Detailed Statement of Financial Activities for the Year Ended 31 March 2021
| 31.3.21 | 31.3.20 | |
|---|---|---|
| £ | £ | |
| INCOME AND ENDOWMENTS | ||
| Donations and legacies | ||
| Donations | 38,023 | 50,397 |
| Gift aid | 2,453 | 1,763 |
| 40,476 | 52,160 | |
| Charitable activities | ||
| Grants | 25,820 | - |
| Total incoming resources | 66,296 | 52,160 |
| EXPENDITURE | ||
| Charitable activities | ||
| Telephone | 895 | 960 |
| Postage and stationery | 2,584 | 3,040 |
| Promotional material | - | 1,737 |
| Sundries | 640 | 1,267 |
| Family day | 165 | 26,927 |
| Travel expenses | 296 | 368 |
| Computer & IT support costs | 70 | 1,003 |
| Charity Manager | 16,491 | 14,425 |
| Administration costs | 3,500 | - |
| Grants to institutions | 7,743 | - |
| 32,384 | 49,727 | |
| Support costs | ||
| Governance costs | ||
| Indemnity insurance | 781 | 751 |
| Accountancy and legal fees | 810 | 1,128 |
| 1,591 | 1,879 | |
| Total resources expended | 33,975 | 51,606 |
| Net income | 32,321 | 554 |
This page does not form part of the statutory financial statements
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