**REGISTERED CHARITY NUMBER: 1140671**
## **Report of the Trustees and Financial Statements for the Year Ended 31 March 2022**
## **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 2022**
|||**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|13|
|**Detailed Statement of Financial Activities**||14||
**Noonan Syndrome Association**
**Reference and Administrative Details for the Year Ended 31 March 2022**
|**TRUSTEES**|Katie Ballard Chair (resigned 31.3.22)|
|---|---|
||Sharon Allsopp Deputy Chair|
||Stephen Hoey Treasurer (resigned 8.5.21)|
||Michael Patton Medical Adviser|
||Ian Legg|
||Grayson Bowler (Treasurer from 9th May 2021)|
||Brian Carlton|
||Jeanette Dyer|
||Andrea Reid - Kelly|
||Gemma Wilkes (resigned 28.1.22)|
|**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 2022**
The trustees present their report with the financial statements of the charity for the year ended 31 March 2022. 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:
1. 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;
2. 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;
3. 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.
Page 2
**Noonan Syndrome Association**
**Report of the Trustees for the Year Ended 31 March 2022**
## **ACHIEVEMENT AND PERFORMANCE**
## **Charitable activities**
The Charity entered the year in a strong financial position due to reduced expenditure (postponement of Families Day in 2020) but stable regular-giver and grant income in the previous year.
With the continuing Covid-19 uncertainty and the vulnerability of many members as we entered the 2021-22 financial year, a series of online webinars were planned and held in place of the in-person Families Day event. We used a professional company to host quarterly webinars and an AGM and found this to be a cost-effective and successful way to support members remotely. Guest medical professionals gave presentations and took part in live Q&A sessions, with good member attendance and very positive feedback.
We invited applications for the two 'pump-primer' research grants which had been postponed in the previous year and, following an extensive application review process, awarded both grants. The funding will support two exciting and innovative research projects which will contribute to Noonan Syndrome learning and hopefully attract longer-term external funding to take the research forward beyond the initial project term.
The new specialist Rasopathies clinic at Great Ormond Street Hospital opened, with the NSA contributing towards the cost of the part-time specialist nurse in collaboration with the main funder, One Great Day. The clinic started later than planned due to pandemic-related delays but opened with a substantial patient list and ongoing demand throughout the year. We provided support to the GOSH team in collecting information for a business case to secure future funding.
With the new charity manager in place, and the previous manager retained on a part-time basis as Finance Officer, the Board of Trustees focused on a review of charity governance. This included a Board skills audit, developing Terms of Reference for subgroups and a Code of Conduct for trustees, as well as a formal trustee recruitment pack and process. The Board also reviewed the 15-month plan, revisiting the charity's aims and objectives. This led to development of a formal Theory of Change and a three-year strategic plan to support it.
During the year, Treasurer Steve Hoey resigned due to a change in work commitments and Trustee Gemma Wilks resigned due to family commitments. An existing Trustee, Grayson Bowler, stepped into the Treasurer role with unanimous agreement of the Board. At the end of the year, Chair Katie Ballard also resigned due to increased work commitments. The Board held an Extraordinary Meeting and unanimously voted in the Deputy Chair, Sharon Allsopp, as Chair for the coming financial year.
In line with the Board's commitment to improve systems and processes to make the charity more efficient and effective, we invested in a professional CRM system and various integrated apps which will help in managing and communicating with our growing membership base.
## **FINANCIAL REVIEW**
## **Financial position**
The statement of Financial Activities shows a surplus for the year of £24,190 (2021: £32,321), and reserves now stand at £118,367 (2021: £94,177).
## **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 £66,389 (2021: £67,506).
Page 3
**Noonan Syndrome Association**
**Report of the Trustees for the Year Ended 31 March 2022**
## **FUTURE PLANS**
A Families Day/Activities Weekend is planned for early October 2022, which will be the first in-person event since before the Covid-19 pandemic. However, the success of the online webinars - and their potential for greater inclusivity than in-person events - mean we will continue to offer these as an additional support activity for members each year.
With the Charity surplus high at the end of this financial year, the Board is keen to invest in areas which will improve operational and support activities. Some are already in progress and will be completed in 2022-23:
- Developing a new, more functional and attractive website;
- Commissioning a series of digital and print medical factsheets on relevant aspects of NS;
- Recruitment of new trustees and volunteers to support subgroup activities;
- -Continued investment in new systems and processes to support the charity's operations, such as exploring online banking options; and
- Seeking free professional consultancy through The Cranfield Trust to support strategic objectives.
Key strategic objectives include increasing income and diversity of income, and widening the range of support available to members (i.e. regional events, new webinar topics, communications). As the charity's membership grows, so the activities and resource to deliver them need also to grow. Managing this in a safe and positive way will continue to be a key focus during 2022/23.
## **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 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 28 January 2023 and signed on its behalf by:
Sharon Allsopp - Trustee
Page 4
**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 2022.
## **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:
1. accounting records were not kept in respect of the Trust as required by Section 130 of the Act; or
2. the accounts do not accord with those records; or
3. 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
Date: .............................................
Page 5
## **Noonan Syndrome Association**
## **Statement of Financial Activities for the Year Ended 31 March 2022**
|Notes
**INCOME AND ENDOWMENTS FROM**
Donations and legacies
2
**Charitable activities**
3
Research
Support Network
**Total**
**EXPENDITURE ON**
**Charitable activities**
4
Research
Support Network
Awareness
**Total**
**NET INCOME/(EXPENDITURE)**
**RECONCILIATION OF FUNDS**
Total funds brought forward
**TOTAL FUNDS CARRIED FORWARD**|Unrestricted
fund
£
27,060
-
-
27,060
4,226
14,088
9,863
28,177
(1,117)
67,506
66,389|Restricted
funds
£
300
23,150
12,750
36,200
3,150
7,743
-
10,893
25,307
26,671
51,978|31.3.22
Total
funds
£
27,360
23,150
12,750
63,260
7,376
21,831
9,863
39,070
24,190
94,177
118,367|31.3.21
Total
funds
£
40,476
-
25,820|
|---|---|---|---|---|
|||||66,296|
|||||3,384
22,692
7,899|
|||||33,975|
|||||32,321
61,856|
|||||94,177|
The notes form part of these financial statements
Page 6
## **Noonan Syndrome Association**
## **Balance Sheet 31 March 2022**
|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**|31.3.22
£
10,912
108,259
119,171
(804)
118,367
118,367
118,367
66,389
51,978
118,367|31.3.21
£
10,911
83,986
94,897
(720)
94,177
94,177
94,177
67,506
26,671
94,177|
|---|---|---|
The financial statements were approved by the Board of Trustees and authorised for issue on 28 January 2023 and were signed on its behalf by:
Sharon Allsopp - Trustee
The notes form part of these financial statements
Page 7
**Noonan Syndrome Association Notes to the Financial Statements for the Year Ended 31 March 2022**
## **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|31.3.22
£
24,593
2,767
27,360|31.3.21
£
38,023
2,453|
|---|---|---|
|||40,476|
Page 8
continued...
**Noonan Syndrome Association**
## **Notes to the Financial Statements - continued for the Year Ended 31 March 2022**
## **3. INCOME FROM CHARITABLE ACTIVITIES**
|**INCOME FROM CHARITABLE ACTIVITIES**|||
|---|---|---|
|Activity
Grants
Research
Grants
Support Network
Grants received, included in the above, are as follows:
Vinci UK Foundation
Novo Nordisk Limited
Novacyt Group|31.3.22
£
23,150
12,750
35,900
31.3.22
£
-
10,900
25,000
35,900|31.3.21
£
-
25,820|
|||25,820|
|||31.3.21
£
15,000
10,820
-|
|||25,820|
## **4. CHARITABLE ACTIVITIES COSTS**
|Direct
Costs (see
note 5)
£
Research
3,984
Support Network
13,277
Awareness
9,295
26,556
**DIRECT COSTS OF CHARITABLE ACTIVITIES**
Telephone
Postage and stationery
Sundries
Family day
Travel expenses
Computer & IT support costs
Charity Manager
Administration costs|Grant
funding of
activities
Support
(see note
costs (see
6)
note 7)
£
£
3,150
242
7,743
811
-
568
10,893
1,621
31.3.22
£
479
1,333
2,080
-
-
2,394
20,270
-
26,556|Totals
£
7,376
21,831
9,863|
|---|---|---|
|||39,070|
|||31.3.21
£
895
2,584
640
165
296
70
16,491
3,500|
|||24,641|
## **5. DIRECT COSTS OF CHARITABLE ACTIVITIES**
Page 9
continued...
**Noonan Syndrome Association**
## **Notes to the Financial Statements - continued for the Year Ended 31 March 2022**
## **6. GRANTS PAYABLE**
|Research
Support Network
The total grants paid to institutions during the year was as follows:
Great Ormond Street Hospital
Loughborough University|31.3.22
£
3,150
7,743
10,893
31.3.22
£
7,743
3,150
10,893|31.3.21
£
-
7,743|
|---|---|---|
|||7,743|
|||31.3.21
£
7,743
-|
|||7,743|
## **7. SUPPORT COSTS**
|**SUPPORT COSTS**||||
|---|---|---|---|
|||Governance||
|||costs||
|||£||
|Research|||242|
|Support Network|||811|
|Awareness|||568|
|||1,621||
|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 2022 nor for the year ended 31 March 2021.
## **Trustees' expenses**
During the year no trustees were reimbursed for travelling expenses ( 2021- one trustee was reimbursed £198).
## **9. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES**
|Unrestricted
Restricted
fund
funds
£
£
**INCOME AND ENDOWMENTS FROM**
Donations and legacies
38,821
1,655
**Charitable activities**
Support Network
-
25,820
**Total**
38,821
27,475|Total
funds
£
40,476
25,820|
|---|---|
||66,296|
## **EXPENDITURE ON**
Page 10
continued...
**Noonan Syndrome Association**
## **Notes to the Financial Statements - continued for the Year Ended 31 March 2022**
|**9.**
**COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued**
Unrestricted
Restricted
fund
funds
£
£
**Charitable activities**
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
**10.**
**DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**
31.3.22
£
Accrued income
2,652
Prepayments
8,260
10,912
**11.**
**CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**
31.3.22
£
Other creditors
804
**12.**
**ANALYSIS OF NET ASSETS BETWEEN FUNDS**
31.3.22
Unrestricted
Restricted
Total
fund
funds
funds
£
£
£
Current assets
67,193
51,978
119,171
Current liabilities
(804)
-
(804)
66,389
51,978
118,367||Total
funds
£
3,384
22,692
7,899
33,975
32,321
61,856
94,177
31.3.21
£
2,453
8,458
10,911
31.3.21
£
720
31.3.21
Total
funds
£
94,897
(720)
94,177|Total
funds
£
3,384
22,692
7,899|
|---|---|---|---|
||||33,975|
||||32,321
61,856|
||||94,177|
|||||
Page 11
continued...
**Noonan Syndrome Association**
## **Notes to the Financial Statements - continued for the Year Ended 31 March 2022**
## **13. MOVEMENT IN FUNDS**
|**Unrestricted funds**
General fund
**Restricted funds**
Noonan Syndrome Research Fund
Families Event
The Andrew Family Research Fund
Support costs
**TOTAL FUNDS**
Net movement in funds, included in the above are as follows:
**Unrestricted funds**
General fund
**Restricted funds**
Noonan Syndrome Research Fund
Families Event
The Andrew Family Research Fund
Support costs
**TOTAL FUNDS**
**Comparatives for movement in funds**
**Unrestricted funds**
General fund
**Restricted funds**
Noonan Syndrome Research Fund
Families Event
The Andrew Family Research Fund
**TOTAL FUNDS**|Net
movement
At
At 1.4.21
in funds
31.3.22
£
£
£
67,506
(1,117)
66,389
1,655
20,300
21,955
15,000
5,000
20,000
10,016
-
10,016
-
7
7
26,671
25,307
51,978
94,177
24,190
118,367
Incoming
Resources
Movement
resources
expended
in funds
£
£
£
27,060
(28,177)
(1,117)
20,300
-
20,300
5,000
-
5,000
3,150
(3,150)
-
7,750
(7,743)
7
36,200
(10,893)
25,307
63,260
(39,070)
24,190
Net
movement
At
At 1.4.20
in funds
31.3.21
£
£
£
51,840
15,666
67,506
-
1,655
1,655
-
15,000
15,000
10,016
-
10,016
10,016
16,655
26,671
61,856
32,321
94,177|
|---|---|
Page 12
continued...
**Noonan Syndrome Association**
**Notes to the Financial Statements - continued for the Year Ended 31 March 2022**
## **13. MOVEMENT IN FUNDS - continued**
Comparative 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|
The Andrew Family Research Fund:
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 £2,181 (2021: £2,053).
Page 13
**Noonan Syndrome Association**
## **Detailed Statement of Financial Activities for the Year Ended 31 March 2022**
||31.3.22|31.3.21|
|---|---|---|
||£|£|
|**INCOME AND ENDOWMENTS**|||
|**Donations and legacies**|||
|Donations|24,593|38,023|
|Gift aid|2,767|2,453|
||27,360|40,476|
|**Charitable activities**|||
|Grants|35,900|25,820|
|**Total incoming resources**|63,260|66,296|
|**EXPENDITURE**|||
|**Charitable activities**|||
|Telephone|479|895|
|Postage and stationery|1,333|2,584|
|Sundries|2,080|640|
|Family day|-|165|
|Travel expenses|-|296|
|Computer & IT support costs|2,394|70|
|Charity Manager|20,270|16,491|
|Administration costs|-|3,500|
|Grants to institutions|10,893|7,743|
||37,449|32,384|
|**Support costs**|||
|**Governance costs**|||
|Indemnity insurance|733|781|
|Accountancy and legal fees|888|810|
||1,621|1,591|
|Total resources expended|39,070|33,975|
|**Net income**|24,190|32,321|
This page does not form part of the statutory financial statements
Page 14