Charity number: 1171274
Company number: CE008898
(England and Wales)
NORRIE DISEASE FOUNDATION
Report of the Trustees and Unaudited Financial Statements
For the year ended 31 December 2024
NORRIE DISEASE FOUNDATION Contents Page For the year ended 31 December 2024
| Report of the Trustees | 1 to 4 |
|---|---|
| Independent Examiner's Report to the Trustees | 5 |
| Statement of Financial Activities | 6 |
| Statement of Financial Position | 7 |
| Notes to the Financial Statements | 8 to 12 |
| Detailed Statement of Financial Activities | 13 |
NORRIE DISEASE FOUNDATION
Report of the Trustees
For the year ended 31 December 2024
The Trustees have pleasure in presenting their report and the financial statements for the charity for the year ended 31 December 2024 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:
The trustees have considered the Charity Commission’s guidance on public benefit, including the guidance 'public benefit: running a charity (PB2)'.
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:
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promoting research and sharing and disseminating of results of such research for the benefit of the general public; and
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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. 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.
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Trustee Anthony Ryers produced a series of videos entitled Flight for Sight’ about his life and experiences as blind DJ and music producer. https://www.youtube.com/watch?v=6C3GQRw5Fc4
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Parent and NDF supporter Carla Golledge spoke at the 2024 Bio Industry Association Gala on behalf of the RNID to share her journey as mum to Cameron.
-Trustee Kelly Leggett shared how important Living Paintings book are to son Alfie who has Norrie disease and how he and his brother enjoy them together.
https://livingpaintings.org/success-stories/its-something-so-special-that-alfie-and-harrison-can-do-together-alfies-story
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NORRIE DISEASE FOUNDATION Report of the Trustees Continued
For the year ended 31 December 2024
Trustees Theresa Peacock and Wendy Horrobin presented at Multi-Sensory Impairment (MSI) Network meetings for MSI professionals across the country on the impact on schooling of Norrie disease and dual sensory loss, and the importance of having MSI involvement. Josh Horrobin also shared his experience of living with Norrie disease and the impact it has had on his schooling.
Communications:
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Communications with those within the Norrie community and the general public through the NDF website, and via social media
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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.
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NDF also has active Twitter/X and Instagram pages.
Research:
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Attended the Great Ormond Street Hospital Children's Charity (GOSHCC) National Call panel review for the NDF shortlisted application 'Norrie disease therapy targeting endothelial cells’ led by Prof Jane Snowden. Trustee Anthony Pitch Reyers spoke about what saving hearing means to the Norrie community. The application was successful and NDF will contribute £75,000 towards the total grant of £250,000.
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Published paper: A. Patel, V. Pauzuolyte, N.J. Ingham, Y.C. Leong, W. Berger, K.P. Steel, & J.C. Sowden, Rescue of cochlear vascular pathology prevents sensory hair cell loss in Norrie disease, Proc. Natl. Acad. Sci. U.S.A. 121 (49) e2322124121, https://doi.org/10.1073/pnas.2322124121 (2024).
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Supported the call to the Norrie disease community to take part in the Great Ormond Street Institute of Child Health (GOSHICH) natural history study to support the hearing loss research as it progresses to finding a treatment.
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The British Society for Gene and Cell Therapy Patient and Public Involvement and Engagement (PPIE) Award 2024 was jointly awarded to Prof Jane Snowden’s lab at GOSHICH and the Norrie Disease Foundation, for the Norrie Disease Conference 2023 that we co-developed to bridge the gap between families, scientists and clinicians.
https://bsgct.org/bsgct-patient-and-public-involvement-and-engagement-award-2024/
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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.
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The NDF are dedicated and committed to finding a treatment for the ND hearing loss. As part of this commitment, 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. NDF was part of the interview panel and the studentship commenced in March 2022 and is due to be completed in 2025.
Fundraising:
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Dr James Arwyn-Jones, who works on the Norrie disease hearing loss research at GOSHICH took part in the Cardiff Olympic distance triathlon in support of NDF.
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Trustee Wendy Horrobin and ten friends completed the 25km Thames Path Walk to raise funds for the continuation of Norrie disease research into finding a treatment for the hearing loss.
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The Trustees would like to thank all of NDF’s incredibly generous supporters who donate regular and one-off donations.
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.
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NORRIE DISEASE FOUNDATION Report of the Trustees Continued
For the year ended 31 December 2024
Chair's report
Statement of Trustees' responsibilities
The Trustees are responsible for preparing the Trustees' report and the accounts in accordance with Charities Act 2011 and United Kingdom Generally Accepted Accounting Practice.
The Charities Act 2011 requires the Trustees to prepare accounts for each financial year which give a true and fair view of its financial activities during the year and of its financial position at the end of the year. In presenting those accounts, they are required to:
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select suitable accounting policies and then apply them consistently;
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observe the methods and principles in the Charities SORP FRS 102;
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make judgements and estimates that are reasonable and prudent;
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follow applicable UK accounting standards and the Charities SORP FRS 102, disclosing and explaining any departures in the accounts; and
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prepare the accounts on the going concern basis unless it is inappropriate to do so.
The Trustees are responsible for maintaining proper accounting records which disclose with reasonable accuracy at any time the financial position of the Charity and to enable them to ensure that the accounts comply with the Charities Act 2011 and with the requirements of the Statement of Recommended Practice 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 (FRS102) (effective 1 January 2015) - Charities SORP FRS102), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102). They are also responsible for safeguarding the assets of the Charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities besides the above responsibilities.
This report was approved by the trustees on 29th August 2025
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 Company registration number CE008898 Principal address PO BOX 12476 Colchester CO1 9RB
Trustees
The trustees and officers serving during the year and since the year end were as follows:
Independent examiner
Theresa Peacock Kelly Louise Leggett Wendy Joan Horrobin Kelly Robinson Anthony Reyers Prof Corné Kros (Appointed: 24 April 2024) Beach Accountants Limited Chartered Certified Accountants 10 Blue Sky Way Monkton Business Park South South Tyneside NE31 2EQ
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NORRIE DISEASE FOUNDATION Report of the Trustees Continued For the year ended 31 December 2024
Approved by the Board of Trustees and signed on its behalf by
............................................................................. Kelly Robinson
05 September 2025
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NORRIE DISEASE FOUNDATION
Independent Examiners Report to the Trustees
For the year ended 31 December 2024
I report to the trustees on my examination of the accounts of the charitable company for the year ended 31 December 2024.
Responsibilities and basis of report
As the charity Trustees, who are also directors for the purposes of company law, are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').
Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts carried out under section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 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:
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accounting records were not kept in respect of the Company as required by section 386 of the 2006 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 requirements of section 396 of the 2006 Act 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; or
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the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).
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.
Beach Accountants Limited Chartered Certified Accountants 10 Blue Sky Way Monkton Business Park South South Tyneside NE31 2EQ
05 September 2025
5 of 13
NORRIE DISEASE FOUNDATION
Statement of Financial Activities (including Income and Expenditure Account) For the year ended 31 December 2024
| Notes Income and endowments from: Donations and legacies 2 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 £ 18,429 18,429 (2,139) (87,953) (90,092) (71,663) 225,822 154,159 |
2023 £ 30,562 |
|---|---|---|
| 30,562 | ||
| (1,783) (3,854) |
||
| (5,637) | ||
| 24,925 200,897 |
||
| 225,822 |
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CE008898
Registered Number :
NORRIE DISEASE FOUNDATION Statement of Financial Position
As at 31 December 2024
----- Start of picture text -----
|||||
|---|---|---|---|
|Notes|2024|2023|
|£|£|
|Current assets|
|Debtors|10|25,022|50,022|
|Cash at bank and in hand|154,995|226,556|
|180,017|276,578|
|Creditors: amounts falling due within one year|11|(25,858)|(50,756)|
|Net current assets|154,159|225,822|
|Total assets less current liabilities|154,159|225,822|
|Net assets|154,159|225,822|
|The funds of the charity|
|Unrestricted income funds|12|154,159|225,822|
|Total funds|154,159|225,822|
----- End of picture text -----
For the year ended 31 December 2024 the company was entitled to exemption from audit under section 477 of the Companies Act 2006 relating to small companies.
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The members have not required the company to obtain an audit of its accounts for the year in question in accordance with section
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476,
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The trustees acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records
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and the preparation of accounts. These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies’ regime.
The financial statements were approved and authorised for issue by the Board and signed on its behalf by:
Kelly Robinson Trustee
05 September 2025
7 of 13
NORRIE DISEASE FOUNDATION Notes to the Financial Statements
For the year ended 31 December 2024
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 Companies Act 2006.
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 2024 . For this reason the financial accounts have been prepared on a going concern basis.
Funds
Unrestricted funds are incoming resources receivable or generated for the furtherance of the objectives of the Charity without a specified purpose and are available as general funds. Resources expended which meet these criteria are charged to the funds, together with a fair allocation of staff and support costs. Restricted funds are used for the specific purposes laid down by the donor or sponsor. Resources expended which meet these criteria are charged to the funds.
Incoming resources
Income is recognised in the period when the charity has entitlement to the funds, any performance conditions attached to the income have been met, it is probable that the income will be received and that the amount can be measured reliably and is not deferred.
Resources expended
Expenditure incurred is recognised in the period once there is a legal constructive obligation to make a payment to a third party. It is probable that settlement will be required and the amount of the obligation can be measured reliably.
Taxation
The Charity is exempt from taxation on its charitable activities, as it is a registered charity.
Debtors
Debtors are recognised at the settlement amount due after allowing for any discounts and as per the terms agreed. Prepayments are valued at the amounts prepaid for services and accrued income are valued at the amounts due per terms agreed and there is certainty of receipt.
Cash at bank and in hand
Cash at bank and cash in hand includes bank balance kept in current and deposit accounts.
Creditors and provisions:
Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provision are normally recognised at their settlement amount after allowing for any discounts.
Critical accounting estimates and judgements:
There are no significant areas of judgement or key sources of estimation uncertainty arising from the preparation of accounts.
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NORRIE DISEASE FOUNDATION
Notes to the Financial Statements Continued
For the year ended 31 December 2024
2. Income from donations and legacies
| Unrestricted funds Donations received Sponsored Events xpenditure on generating donations and legacies Unrestricted funds Support costs osts of charitable activities by activity type Grant funding of activities Activities undertaken directly £ £ Grant funding of activities Sponsored Events 87,465 488 nalysis of support costs Governance costs Insurance Website Accountancy Postage and stationary Regulator costs Subscriptions |
2024 £ 18,429 18,429 2024 £ 2,139 2,139 2024 £ 87,953 2024 £ 610 80 858 445 60 86 2,139 |
2023 £ 30,562 |
|---|---|---|
| 30,562 | ||
| 2023 £ 1,783 |
||
| 1,783 | ||
| 2023 £ 3,854 2023 £ 401 113 756 463 50 - |
||
| 1,783 |
4. Expenditure on generating donations and legacies
5. Costs of charitable activities by activity type
6. Analysis of support costs
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NORRIE DISEASE FOUNDATION
Notes to the Financial Statements Continued
For the year ended 31 December 2024
7. Particulars of employees
| 2024 | 2023 | |
|---|---|---|
| General | 0 | 0 |
| 0 | 0 |
8. Trustee remuneration and related party transactions
There were no disclosable related party transactions in the financial year.
9. Comparative for the Statement of Financial Activities
The comparative year values on the Statement of Financial Activites are for unrestricted funds.
10. Debtors
| Amounts due within one year: Prepayments and accrued income Other debtors |
2024 2023 £ £ 25,000 50,000 22 22 25,022 50,022 |
|---|---|
Prepayment includes un-invoiced fees for PhD funding which are payable on completion of work, the remaining funding is now expected to be invoiced in 2025.
11. Creditors: amounts falling due within one year
| Other creditors Accruals and deferred income |
2024 £ 25,000 858 25,858 |
2023 £ 50,000 756 |
|---|---|---|
| 50,756 |
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NORRIE DISEASE FOUNDATION
Notes to the Financial Statements Continued
For the year ended 31 December 2024
12. Movement in funds
| Unrestricted Funds General General Unrestricted Funds - Previous year General General Purpose of unrestricted Funds General To fund the general objectives of the charity. Restricted Funds Restricted Funds - Previous year Family fun day |
Balance at 01/01/2024 £ 225,822 225,822 Balance at 01/01/2023 £ 199,126 199,126 |
Incoming resources £ 18,429 18,429 Incoming resources £ 30,562 30,562 |
Outgoing resources £ (90,092) (90,092) Outgoing resources £ (5,637) (5,637) Balance at 01/01/2024 £ - Balance at 01/01/2023 £ 1,771 1,771 |
Transfers £ - - Transfers £ 1,771 1,771 Transfers £ - Transfers £ (1,771) (1,771) |
Balance at 31/12/2024 £ 154,159 |
|---|---|---|---|---|---|
| 154,159 | |||||
| Balance at 31/12/2023 £ 225,822 |
|||||
| 225,822 | |||||
| Balance at 31/12/2024 £ |
|||||
| - | |||||
| Balance at 31/12/2023 £ - |
|||||
| - |
11 of 13
NORRIE DISEASE FOUNDATION Notes to the Financial Statements Continued
For the year ended 31 December 2024
Purpose of restricted funds
Family fun day
To fund family fun days and conferences as stipulated by the terms of funds received.
13. Analysis of net assets between funds
| Unrestricted funds General General Previous year Unrestricted funds General General |
Net current assets / (liabilities) Net Assets £ £ 154,159 154,159 |
|---|---|
| 154,159 154,159 |
|
| Net current assets / (liabilities) Net Assets £ £ 225,822 225,822 |
|
| 225,822 225,822 |
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NORRIE DISEASE FOUNDATION Detailed Statement of Financial Activities
For the year ended 31 December 2024
| INCOME AND ENDOWMENT Donations and legacies Donations Total incoming resources EXPENDITURE Charitable activities Cost of direct charitable activity Cost of grant funded charitable activity SUPPORT COSTS Governance costs Governance costs Total resources expended Net Expenditure |
£ 2024 18,429 18,429 18,429 (488) (87,465) (87,953) (2,139) (2,139) (90,092) (71,663) |
£ 2023 30,562 |
|---|---|---|
| 30,562 | ||
| 30,562 (3,854) - |
||
| (3,854) (1,783) |
||
| (1,783) | ||
| (5,637) | ||
| 24,925 |
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