DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
Charity number: 1171274
NORRIE DISEASE FOUNDATION
Report of the Trustees and Unaudited Financial Statements
For the year ended 31 December 2021
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Contents Page For the year ended 31 December 2021
| Report of the Trustees | 1 to 3 |
|---|---|
| Independent Examiner's Report to the Trustees | 4 |
| Statement of Financial Activities | 5 |
| Statement of Financial Position | 6 |
| Notes to the Financial Statements | 7 to 11 |
| Detailed Statement of Financial Activities | 12 |
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Report of the Trustees
For the year ended 31 December 2021
The Trustees have pleasure in presenting their report and the financial statements for the charity for the year ended 31 December 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 the Republic of Ireland (FRS 102) (effective 1 January 2015).
Structure, governance and management
The Norrie Disease Foundation was established as a Charitable Incorporated Organisation on 24 January 2017 and is managed by the Board of Trustees.
Risk assessment and 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 regularly review the risks to which NDF is exposed, particularly activity, operational and financial risks and to ensure procures and reporting regimes to manage and reduce any identified risks are in place. The prime risk to which NDF is exposed is financial. The Trustees are satisfied that the current level of reserves is adequate to meet both unforeseen contingencies and the costs of planned activities for the future.
Objectives and charitable activities
Charitable objectives
To relieve the needs of those affected by Norrie disease by promoting greater understanding of the causes, symptoms, and treatment of Norrie disease in all its forms including:
-
promoting research and sharing and disseminating of results of such research for the benefit of the general public; and
-
raising public awareness of the symptoms, needs and related medical conditions of those living with Norrie disease.
Charitable activities
The Trustees ensure that sufficient attention is paid to fundraising activities, monitoring grant funding opportunities and manage the charity's assets to ensure its sustainability and ability to carry out its charitable objectives. The charity relies heavily on its volunteers as it has no paid members of staff.
Public benefit
In exercising their duty, the Trustees confirm that they have considered the Charity Commission's guidance on public benefit, including the guidance 'public benefit: running a charity (PB2)'.
Our objectives are to offer support and information to families affected by Norrie disease. NDF liaises closely with researchers at UCL Great Ormond St Hospital (UCL GOSH) with regards to the ongoing pioneering research into hearing loss associated with Norrie disease. It also works constructively and in partnership with other agencies and organisations to continually improve support for families affected by Norrie disease - to change lives and make a difference to those living with the condition.
Summary of activities, achievement and performance
Key activities and achievements throughout the year include:
Peer Support
One of the main aims of the Foundation is to bring together families and the Norrie community to share experiences and provide peer support through the Norrie network. Due to the continuing Covid-19 pandemic, we were unfortunately unable to organise a Family Day but we continue to provide support via email and through the ND private Facebook group, where ND families have found comfort from hearing and sharing experiences. During 2020-20221 the Foundation signposted Norrie families to the GOSH dual sensory clinics for state of the art dual sensory testing using cutting edge equipment. This was part of the groundbreaking dual sensory clinics at the new GOSH Sight and Sound hospital.
1 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Report of the Trustees Continued
For the year ended 31 December 2021
Communications
-
Communications with those within the Norrie community and the general public through the NDF website, and via social media.
-
On Facebook a public page for the general public is used as our primary form of outbound communication. We also have a closed support group for families affected by the condition.
-
NDF also has active Twitter and Instagram pages.
Research
- NDF continues to support the Medical Advisory Board (MAB), which was formed to guide the
trustees in scientific matters, including research efforts and direction, and consists of renowned experts in the field. The MAB continues to meet regularly to facilitate the expanding body of knowledge around Norrie disease so families can be better supported - the trustees are very grateful to the MAB members for their dedication and commitment to helping Norrie families. The MAB takes the lead in identifying research opportunities.
- NDF published its Research Strategy committing the charity to supporting laboratory and clinical research focused on:
(i)understanding the genetics of ND and the causes of hearing loss including how and when it occurs, in order to identify the right time for intervention with a potential therapy, and
(ii) NDP gene therapy or other approaches to correct the damaging effect of the faulty gene in order to prevent the disease.
-
The NDF are dedicated and committed to finding a treatment for the ND hearing loss.
-
The NDF is funding a dedicated NDF PhD Studentship at UCL Great Ormond Street Institute of Child Health on gene therapy for ND investigating delivery of the NDP gene directly to the ear, commencing March 2022.
Fundraising
-
Much of the planned fundraising was cancelled due to the Covid-19 pandemic. The Royal Parks Half was postponed to October 2021, and NDF had six official charity places in the event. NDF also received a charity place at the London Marathon, and had runners fundraising for NDF at several other iconic races across the country, including the Great North Run.
-
The Trustees would like to thank all of NDF’s incredibly generous supporters who donate regular and one-off donations.
-
XiJaro and Pitch (the latter being Trustee and Ambassador Anthony Ryers) continue to support the NDF through online streaming events to raise funds and awareness of ND.
-
NDF is grateful to Genetic Disorders UK for its support in providing grants and we would also like to thank the AKO Foundation for its donation as part of its employee 'Give Back' scheme.
Financial review and reserves policy
The charity Trustees continually monitor cash reserves to ensure its financial stability. The Trustees have examined the NDF's requirements for free reserves in light of predominant risks to the NDF. These are identified as a loss of income from donations and fundraising. The NDF is committed to building a reserves policy to ensure there is enough funding to cover one year's operating costs and the expenses for one family meet up per year. The charity has no outstanding financial obligations nor outstanding debts. The charity's principal source of funds comes from the general public, either through donations or at one-off fundraising events.
OBJECTIVES AND ACTIVITIES
Objectives and aims
The trustees have considered the Charity Commision's guidance on public benefit, including the guidance 'public benefit: running a charity (PB2)'.
REFERENCE AND ADMINISTRATIVE INFORMATION
Name of Charity NORRIE DISEASE FOUNDATION Charity registration number 1171274 Principal address PO BOX 12476 Colchester CO1 9RB
2 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Report of the Trustees Continued For the year ended 31 December 2021
Trustees
The trustees and officers serving during the year and since the year end were as follows:
Theresa Peacock Kelly Louise Leggett Wendy Joan Horrobin Kelly Robinson Caroline Elizabeth Harding Anthony Reyers (Appointed: 27 January 2021)
Independent examiner
Beach Accountants Limited Chartered Certified Accountants 10 Blue Sky Way Monkton Business Park South South Tyneside NE31 2EQ
Approved by the Board of Trustees and signed on its behalf by
............................................................................. | bullyDocuSignedKolivsow.by: CFC2504A5D64419... Kelly Robinson
30 September 2022
3 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION
Independent Examiners Report to the Trustees
For the year ended 31 December 2021
I report to the trustees on my examination of the accounts of the charity for the year ended 31 December 2021.
Responsibilities and basis of report
As the charity trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the 2011 Act').
I report in respect of my examination of the charity’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent examiners statement
I have completed my examination. I confirm that no 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 Charity as required by section 130 of the 2011 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.
E7789DD5DB0540C...
Beach Accountants Limited
Chartered Certified Accountants
10 Blue Sky Way Monkton Business Park South South Tyneside NE31 2EQ
30 September 2022
4 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Statement of Financial Activities
For the year ended 31 December 2021
| Notes Income and endowments from: Donations and legacies 2 Charitable activities 3 Total Expenditure on: Raising funds 4 Charitable activities 5 Total Net income/expenditure Reconciliation of funds Total funds brought forward Total funds carried forward |
Unrestricted funds £ 71,304 - 71,304 (1,638) (184) (1,822) 69,482 110,508 179,990 |
Restricted funds £ - - - - - - - 1,771 1,771 |
2021 £ 71,304 - 71,304 (1,638) (184) (1,822) 69,482 112,279 181,761 |
2020 £ 57,768 5,029 |
|---|---|---|---|---|
| 62,797 | ||||
| (63,956) (2,662) |
||||
| (66,618) | ||||
| (3,821) 116,100 |
||||
| 112,279 |
5 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Statement of Financial Position
As at 31 December 2021
| Notes | 2021 | 2020 | |
|---|---|---|---|
| £ | £ | ||
| Current assets | |||
| Cash at bank and in hand | 182,349 | 112,819 | |
| 182,349 | 112,819 | ||
| Creditors: amounts falling due within one year | 10 | (588) | (540) |
| Net current assets | 181,761 | 112,279 | |
| Total assets less current liabilities | 181,761 | 112,279 | |
| Net assets | 181,761 | 112,279 | |
| The funds of the charity | |||
| Restricted income funds | 11 | 1,771 | 422 |
| Unrestricted income funds | 11 | 179,990 | 111,857 |
| Total funds | 181,761 | 112,279 |
The financial statements were approved and authorised for issue by the Board and signed on its behalf by:
Kelly Robinson Trustee
30 September 2022
6 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Notes to the Financial Statements
For the year ended 31 December 2021
1. Accounting Policies
Basis of accounting
The financial statements have been prepared under the historical cost convention, except for investments which are included at market value and the revaluation of certain fixed assets and 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 2015)’, Financial Reporting Standard 102 the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102), and the Charities Act 2011.
NORRIE DISEASE FOUNDATION meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).
Going concern
The Trustees have assessed the financial viability of the Charity and have concluded that there is no reason why the Charity will not continue operating for at least 12 months following the year ending 31st December 2021 . For this reason the financial accounts
have been prepared on a going concern basis.
2. Income from donations and legacies
| 2021 | 2020 | |
|---|---|---|
| £ | £ | |
| Unrestricted funds | ||
| Donations received | 68,804 | 57,768 |
| Grants received | 2,500 | - |
| 71,304 | 57,768 | |
| come from charitable activities | ||
| 2021 | 2020 | |
| £ | £ | |
| Sponsored Events | ||
| Income from charitable activities | - | 5,029 |
| xpenditure on generating donations and legacies | ||
| 2021 | 2020 | |
| £ | £ | |
| Unrestricted funds | ||
| Donations | - | 62,500 |
| Support costs | 1,638 | 1,456 |
| 1,638 | 63,956 |
3. Income from charitable activities
4. Expenditure on generating donations and legacies
7 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Notes to the Financial Statements Continued
For the year ended 31 December 2021
5. Costs of charitable activities by activity type
| Activities undertaken directly Sponsored Events 6. Analysis of support costs Governance costs 7. Particulars of employees General |
2021 £ 184 2021 £ 1,638 2021 0 0 |
2020 £ 2,662 2020 £ 1,456 2020 0 |
|---|---|---|
| 0 |
8. Trustee remuneration and related party transactions
There are no reportable transactions in the year with Trustees that need to be declared.
8 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION
Notes to the Financial Statements Continued
For the year ended 31 December 2021
9. Comparative for the Statement of Financial Activities
| Income and endowments from: Donations and legacies Charitable activities Total Expenditure on: Raising funds Charitable activities Total Net expenditure Reconciliation of funds Total funds brought forward Total funds carried forward |
Unrestricted funds £ 57,768 5,029 62,797 (62,500) (1,313) (63,813) (1,016) 114,329 113,313 |
Restricted funds £ - - - - (1,349) (1,349) (1,349) 1,771 422 |
2020 £ 57,768 5,029 |
|---|---|---|---|
| 62,797 | |||
| (62,500) (2,662) |
|||
| (65,162) | |||
| (2,365) 116,100 |
|||
| 113,735 |
10. Creditors: amounts falling due within one year
Accruals and deferred income
| 2021 £ 588 588 |
2020 £ 540 |
|---|---|
| 540 |
11. Movement in funds
Unrestricted Funds
| General General Unrestricted Funds - Previous year General General |
Balance at 01/01/2021 £ 110,508 110,508 Balance at 01/01/2020 £ 114,329 114,329 |
Incoming resources £ 71,304 71,304 Incoming resources £ 62,797 62,797 |
Outgoing resources £ (1,822) (1,822) Outgoing resources £ (65,269) (65,269) |
Balance at 31/12/2021 £ 179,990 |
|---|---|---|---|---|
| 179,990 | ||||
| Balance at 31/12/2020 £ 111,857 |
||||
| 111,857 |
9 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Notes to the Financial Statements Continued
For the year ended 31 December 2021
Purpose of unrestricted Funds
General
To fund the general objectives of the charity.
Restricted Funds
| Family fun day Restricted Funds - Previous year Family fun day Analysis of net assets between funds Unrestricted funds General General Restricted funds Family fun day |
Balance at 01/01/2021 £ 1,771 1,771 Balance at 01/01/2020 £ 1,771 1,771 |
Outgoing resources Balance at 31/12/2021 £ £ 1,771 - - 1,771 Outgoing resources Balance at 31/12/2020 £ £ 422 (1,349) (1,349) 422 Net current assets / (liabilities) Net Assets £ £ 179,990 179,990 1,771 1,771 |
Balance at 31/12/2021 £ 1,771 |
|
|---|---|---|---|---|
| 1,771 | ||||
| Balance at 31/12/2020 £ 422 |
||||
| 422 | ||||
| 181,761 181,761 |
12. Analysis of net assets between funds
10 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Notes to the Financial Statements Continued
For the year ended 31 December 2021
| Previous year Unrestricted funds General General Restricted funds Family fun day |
Net current assets / (liabilities) Net Assets £ £ 111,857 111,857 422 422 |
|---|---|
| 112,279 112,279 |
11 of 12
DocuSign Envelope ID: ECEE91AD-B579-4A26-9EB1-F4B469D3EE5DDocuSign Envelope ID: 0BADDC39-8BD9-439A-A9C5-B4E784028CFF
NORRIE DISEASE FOUNDATION Detailed Statement of Financial Activities
For the year ended 31 December 2021
| INCOME AND ENDOWMENT Donations and legacies Donations Grants receivable Charitable activities Income from charitable activities Total incoming resources EXPENDITURE Raising donations and legacies Donations Charitable activities Cost of direct charitable activity SUPPORT COSTS Governance costs Governance costs Total resources expended Net Income |
£ 2021 68,804 2,500 71,304 - - 71,304 - - (184) (184) (1,638) (1,638) (1,822) 69,482 |
£ 2020 57,768 - |
|---|---|---|
| 57,768 5,029 |
||
| 5,029 | ||
| 62,797 (62,500) |
||
| (62,500) (2,662) |
||
| (2,662) (1,456) |
||
| (1,456) | ||
| (66,618) | ||
| (3,821) |
12 of 12
This page does not form part of the statutory financial statements