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2024-06-30-accounts

REGISTERED CHARITY NUMBER: 1200737

Report of the Trustees and

Unaudited Financial Statements for the Year Ended 30 June 2024

for - Cure and Action for Tay Sachs (CATS) Foundation

Thornton Springer LLP Chartered Accountants

67 Westow Street London SE19 3RW

- Cure and Action for Tay Sachs (CATS) Foundation

Contents of the Financial Statements for the Year Ended 30 June 2024

Page
Report of the Trustees 1 to 4
Independent Examiner's Report 5
Statement of Financial Activities 6
Balance Sheet 7 to 8
Notes to the Financial Statements 9 to 15
Detailed Statement of Financial Activities 16

- Cure and Action for Tay Sachs (CATS) Foundation

Report of the Trustees for the Year Ended 30 June 2024

The trustees present their report with the financial statements of the charity for the year ended 30 June 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 Republic of Ireland (FRS 102) (effective 1 January 2019).

OBJECTIVES AND ACTIVITIES

Objectives and aims

The Charity is committed in finding a way to effectively treat both Tay-Sachs and Sandhoff disease. This is why we are actively involved with the team leading the research into a potential treatment. Until this is available we will continue to support all families affected by the disease in any way we can.

Our defined aims are:

  1. Raise awareness of Tay-Sachs and its associated diseases (such as Sandhoff disease) to the public by providing relevant information on our website.

  2. Raise money for the research into the diseases for a potential treatment.

  3. Provide an information resource centre, support network and equipment for families affected by the disease.

The objectives in the trust deed which govern the charity are the relief of sickness and the preservation of good health among sufferers of Tay-Sachs and Sandhoff disease which is achieved by supporting research, families, providing equipment and financing trips at home or overseas for treatment.

Public benefit

In planning our activities we have complied with the duties required by the Charities Act 2011 to have due regard to guidance published by the Charity Commission in relation to public benefit. During the year the charity continued to work for the good of society by continuing to make grants to support children and their families in need. The public benefit of the charity's activities are outlined under 'Objectives and Activities' and 'Achievements and Performance'.

Social investments

Our policy is to provide grants for equipment which can improve a sufferer's quality of life where it is not available on the NHS. One condition is that the family must seek funding from their health care provider first and, if the piece of equipment they require is not available or an inferior alternative is suggested, then the charity will provide funding. Each piece of equipment must be kept in an acceptable condition so that it may be passed onto another family when they are no longer required. Also, the equipment remains the property of the charity and not the individual.

Grantmaking

In order for us to meet our charitable objectives we have to ensure that certain policies are in place. These allow us to set our standards for making grants to the research team and ensuring we can always meet our goals by having a reserve policy for the charity. We also have policies for respite trip grants, equipment grants and research grants that we offer to families who are affected by both Tay-Sachs and Sandhoff disease. These vital policies safeguard the future of The CATS Foundation which in turn will enable us to continue supporting families affected by Tay-Sachs and Sandhoff disease. Each of our policies at The CATS Foundation are reviewed on a yearly basis to ensure that they are meeting the charity's aims and objectives as set in our governing document, the Trust Deed. The trustees meet at the end of each financial year to determine whether any changes are required or if new policies and procedures are required. During the year we did not need to update any of the policies. Each policy is also written so that they are in line with our overall reserves policy. This is to ensure that if there is an event which means the charity cannot raise any additional funds for a year that we are still able to offer our services to member families.

Volunteers

We have continued to work closely with our volunteers and involving them in several projects that are turned into patient engagement and research for treatments for the diseases.

Page 1

- Cure and Action for Tay Sachs (CATS) Foundation

Report of the Trustees for the Year Ended 30 June 2024

ACHIEVEMENTS AND PERFORMANCE

The CATS Foundation's main focus is supporting families affected by Tay-Sachs and Sandhoff whilst also raising awareness of the diseases. The charity provides a support network, respite trips and vital equipment so that a sufferer's quality of life is as high as possible.

The CATS Foundation also provides funding and support in the form of advice to several research teams who are investigating a potential treatment for both Tay-Sachs and Sandhoff disease, our efforts to run a European registry and advocacy work has placed these two ultra rare diseases on the radar for researchers and pharma companies and we are now actively involved in 11 research projects for the diseases.

FINANCIAL REVIEW

Financial position

The charity performed well this year, with a increase in donations which is connected directly to better engagement with the community it serves.

We continue to work with our partners to secure restricted grants that help us deliver specific projects that go directly into benefiting our community.

Principal funding sources

The Cure and Action for Tay-Sachs (CATS) Foundation continues to rely heavily on the generosity of its community through fundraising efforts to support its core operations and deliver vital charitable activities. Grants are typically sought for specific projects that align with the Foundation's charitable objectives.

During this financial year, we were awarded an additional £31,485 from the National Lottery Community Fund (NLCF), in the final year of this 3-year grant we were able to develop strong bonds with our community thanks to the work of our Family Support Officers.

Our pharmaceutical partners have also played a critical role in supporting several important ongoing projects within the community:

Sanofi Pobo Aventis Pharma contributed a total of £18,950 to multiple initiatives, including:

Page 2

- Cure and Action for Tay Sachs (CATS) Foundation

Report of the Trustees for the Year Ended 30 June 2024

FINANCIAL REVIEW

Reserves policy

Our reserves policy is based on the charity being able to provide some level of support to families affected by Tay-Sachs. We have set policies that require:

-Reserves to be maintained at a level which ensures that the charity's core activity could continue during a period of unforeseen difficulty.

-A proportion of reserves to be maintained in a readily realizable form.

Therefore we have set a minimum of £10,000 free reserves to be held in the charity to ensure we are able to maintain running the charity and meeting the main objectives set for the charity.

The breakdown for our minimum free reserves is shown below:

-Providing equipment: £2,500 (25% of reserve)

-Respite trips: £2,500 (25% of reserve)

-Administration: £5,000 (50% of reserve)

This reserve breakdown will allow us to meet a minimum level of our charitable objectives if there is a significant decrease in our donations during the next financial year. As is our standard practice, the reserve policy will be reviewed on a yearly basis.

Going concern

No uncertainties exist about the charity continuing as a going concern. The trustees are aware that a small charity mostly reliant on community funding needs to be managed very closely at all times. Trustees follow strict grant policy and guidelines when they make decisions concerning grants and expenses and the overall running of the charity. The charity is run on absolutely minimal costs, and all trustees invest a lot of time and experience in the running of the charity.

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing document

The charity is controlled by its governing document, a deed of trust and constitutes a charitable incorporated organisation.

Charity constitution

Charitable Incorporated Organisation (CIO).

Recruitment and appointment of new trustees

Trustees are appointed for a five-year term but can remain on the board for an undetermined period and candidates are usually found amongst people known to the existing trustees. New trustees will be directed towards the advice available from the Charity Commission and additional training will be given where it is considered necessary.

Page 3

- Cure and Action for Tay Sachs (CATS) Foundation

Report of the Trustees for the Year Ended 30 June 2024

STRUCTURE, GOVERNANCE AND MANAGEMENT Organisational structure

The charity underwent a significant structural change involving a formal change to its legal form. This was a fundamental development in the charity's governance and operations, and is disclosed in accordance with reporting requirements. On 18 October 2022, the organisation transitioned from an unincorporated association to a Charitable Incorporated Organisation (CIO). This change was undertaken to strengthen governance, provide trustees with limited liability and modernise the organisation's structure.

As a result of this restructure, the charity was assigned a new charity registration number:

Both the former and new entities reflect the continuity of the charity's purpose and activities. Assets, liabilities, and ongoing commitments were transferred to the new legal entity as part of the restructure, ensuring no disruption to our beneficiaries, stakeholders, or the delivery of our charitable objectives.

The Trustees are confident that this structural change enhances the charity's long-term sustainability, regulatory compliance, and capacity to fulfil its mission effectively.

REFERENCE AND ADMINISTRATIVE DETAILS Registered Charity number 1200737

Registered office

Suite 3 Peel House 30 The Downs Altrincham WA14 2PX

Trustees

D P R How Ms S Choudhury T L ap Gwilym Ms K R Lewi

Independent Examiner

Thornton Springer LLP Chartered Accountants 67 Westow Street London SE19 3RW

Approved by order of the board of trustees on ............................................. and signed on its behalf by:

........................................................................ D P R How - Trustee

Page 4

Independent Examiner's Report to the Trustees of - Cure and Action for Tay Sachs (CATS) Foundation

Independent examiner's report to the trustees of Cure and Action for Tay-Sachs (CATS) Foundation

I report to the charity trustees on my examination of the accounts of Cure & Action for Tay-Sachs Foundation (the Trust) for the year ended 30 June 2024.

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.

Z. Saleem

The Institute of Chartered Accountants in England and Wales

Thornton Springer LLP Chartered Accountants 67 Westow Street London SE19 3RW

Date: .............................................

Page 5

- Cure and Action for Tay Sachs (CATS) Foundation

Statement of Financial Activities for the Year Ended 30 June 2024

30.6.24 30.6.23
Unrestricted Restricted Total Total
fund funds funds funds
Notes £ £ £ £
INCOME AND ENDOWMENTS FROM
Donations and legacies 33,089 55,434 88,523 73,603
Investment income 2 **301 ** - **301 ** 114
Total 33,390 **55,434 ** 88,824 73,717
EXPENDITURE ON
Charitable activities
Charitable Activities 37,755 **58,431 ** 96,186 84,914
NET INCOME/(EXPENDITURE) (4,365) (2,997) (7,362) (11,197)
RECONCILIATION OF FUNDS
Total funds brought forward 13,336 11,670 25,006 36,203
TOTAL FUNDS CARRIED FORWARD **8,971 ** 8,673 17,644 25,006

The notes form part of these financial statements

Page 6

- Cure and Action for Tay Sachs (CATS) Foundation

Balance Sheet 30 June 2024

30.6.24 30.6.23
Unrestricted Restricted Total Total
fund funds funds funds
Notes £ £ £ £
FIXED ASSETS
Tangible assets 6 1,257 794 2,051 1,414
CURRENT ASSETS
Debtors 7 1,243 398 1,641 4,589
Cash at bank 14,216 10,649 24,865 24,412
15,459 11,047 26,506 29,001
CREDITORS
Amounts falling due within one year 8 (7,745) (3,168) (10,913) (5,409)
NET CURRENT ASSETS 7,714 7,879 15,593 23,592
TOTAL ASSETS LESS CURRENT
LIABILITIES 8,971 8,673 17,644 25,006
NET ASSETS **8,971 ** 8,673 17,644 25,006
FUNDS 9
Unrestricted funds 8,971 13,336
Restricted funds 8,673 11,670
TOTAL FUNDS 17,644 25,006

The financial statements were approved by the Board of Trustees and authorised for issue on ............................................. and were signed on its behalf by:

............................................. D P R How - Trustee

The notes form part of these financial statements

Page 7

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements for the Year Ended 30 June 2024

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

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.

Tangible fixed assets

Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.

Equipment on loan - 10% - 20% on cost Computer equipment - 33% on cost

Taxation

The charity is exempt from corporation 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.

Pension costs and other post-retirement benefits

The charitable company operates a defined contribution pension scheme. Contributions payable to the charitable company's pension scheme are charged to the Statement of Financial Activities in the period to which they relate.

continued...

Page 8

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements - continued for the Year Ended 30 June 2024

2. INVESTMENT INCOME

INVESTMENT INCOME
30.6.24 30.6.23
£ £
Deposit account interest **301 ** 114

3. NET INCOME/(EXPENDITURE)

Net income/(expenditure) is stated after charging/(crediting):

30.6.24 30.6.23
£ £
Depreciation - owned assets 608 654

4. TRUSTEES' REMUNERATION AND BENEFITS

There were no trustees' remuneration or other benefits for the year ended 30 June 2024 nor for the year ended 30 June 2023.

Trustees' expenses

There were no trustees' expenses paid for the year ended 30 June 2024 nor for the year ended 30 June 2023.

5. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES

Unrestricted
Restricted
fund
funds
£
£
INCOME AND ENDOWMENTS FROM
Donations and legacies
27,169
46,434
Investment income
114
-
Total
27,283
46,434
EXPENDITURE ON
Charitable activities
Charitable Activities
47,863
37,051
NET INCOME/(EXPENDITURE)
(20,580)
9,383
RECONCILIATION OF FUNDS
Total funds brought forward
33,916
2,287
TOTAL FUNDS CARRIED FORWARD
13,336
11,670
Total
funds
£
73,603
114
73,717
84,914
(11,197)
36,203
25,006

continued...

Page 9

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements - continued for the Year Ended 30 June 2024

6. TANGIBLE FIXED ASSETS
Equipment Computer
on loan equipment Totals
£ £ £
COST
At 1 July 2023 7,743 2,577 10,320
Additions - 1,245 1,245
At 30 June 2024 7,743 3,822 11,565
DEPRECIATION
At 1 July 2023 6,329 2,577 8,906
Charge for year **504 ** **104 ** 608
At 30 June 2024 6,833 **2,681 ** 9,514
NET BOOK VALUE
At 30 June 2024 910 1,141 **2,051 **
At 30 June 2023 1,414 - 1,414
7. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
30.6.24 30.6.23
£ £
Other debtors - 1
Other debtor 1,641 4,588
1,641 4,589
8. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
30.6.24 30.6.23
£ £
Workplace pension control 319 -
Accruals and deferred income **10,594 ** 5,409
10,913 5,409

continued...

Page 10

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements - continued

for the Year Ended 30 June 2024

9. MOVEMENT IN FUNDS

MOVEMENT IN FUNDS
Net
movement At
At 1.7.23 in funds 30.6.24
£ £ £
Unrestricted funds
General fund 13,336 (4,365) 8,971
Restricted funds
CAF COVID-19 Emergency Fund 1,211 (417) 794
NLCF Family Support Officers Grant 1,529 (1,529) -
Translation of eAcademy App Grant - 76 76
Azafaros - Clinician Toolkit 54 (54) -
WORLD Symposium Travel and
Attendance - 585 585
Awareness & Educational Campaign 3,148 (713) 2,435
GM2 Company Consortium Support 5,728 (5,568) 160
NTSAD - Research Conference Attendance - 190 190
Tay-Sachs and Sandhoff New Diagnosis
Packs - 4,433 4,433
11,670 (2,997) 8,673
TOTAL FUNDS 25,006 (7,362) 17,644
Net movement in funds, included in the above are as follows:
Incoming Resources Movement
resources expended in funds
£ £ £
Unrestricted funds
General fund 33,390 (37,755) (4,365)
Restricted funds
CAF COVID-19 Emergency Fund (1) (416) (417)
NLCF Family Support Officers Grant 31,485 (33,014) (1,529)
Translation of eAcademy App Grant 4,000 (3,924) 76
Azafaros - Clinician Toolkit - (54) (54)
WORLD Symposium Travel and
Attendance 3,200 (2,615) 585
Awareness & Educational Campaign - (713) (713)
GM2 Company Consortium Support - (5,568) (5,568)
NTSAD - Research Conference Attendance 2,000 (1,810) 190
Tay-Sachs and Sandhoff New Diagnosis
Packs 9,750 (5,317) 4,433
Virtual Tay-Sachs and Sandhoff Family
Conference 5,000 **(5,000) ** -
**55,434 ** (58,431) (2,997)
TOTAL FUNDS 88,824 **(96,186) ** (7,362)

continued...

Page 11

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements - continued for the Year Ended 30 June 2024

9. MOVEMENT IN FUNDS - continued

Comparatives for movement in funds

Net
movement At
At 1.7.22 in funds 30.6.23
£ £ £
Unrestricted funds
General fund 33,916 (20,580) 13,336
Restricted funds
CAF COVID-19 Emergency Fund 1,627 (416) 1,211
NLCF Family Support Officers Grant 660 869 1,529
Azafaros - Clinician Toolkit - 54 54
Awareness & Educational Campaign - 3,148 3,148
GM2 Company Consortium Support - 5,728 5,728
2,287 9,383 11,670
TOTAL FUNDS 36,203 (11,197) 25,006
Comparative net movement in funds, included in the above are as follows:
Incoming Resources Movement
resources expended in funds
£ £ £
Unrestricted funds
General fund 27,283 (47,863) (20,580)
Restricted funds
CAF COVID-19 Emergency Fund - (416) (416)
NLCF Family Support Officers Grant 21,782 (20,913) 869
Azafaros - Clinician Toolkit 8,000 (7,946) 54
WORLD Symposium Travel and
Attendance 3,152 (3,152) -
Awareness & Educational Campaign 6,000 (2,852) 3,148
GM2 Company Consortium Support 7,500 (1,772) 5,728
46,434 (37,051) 9,383
TOTAL FUNDS 73,717 (84,914) (11,197)

continued...

Page 12

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements - continued

for the Year Ended 30 June 2024

9. MOVEMENT IN FUNDS - continued

A current year 12 months and prior year 12 months combined position is as follows:

Net
movement At
At 1.7.22 in funds 30.6.24
£ £ £
Unrestricted funds
General fund 33,916 (24,945) 8,971
Restricted funds
CAF COVID-19 Emergency Fund 1,627 (833) 794
NLCF Family Support Officers Grant 660 (660) -
Translation of eAcademy App Grant - 76 76
WORLD Symposium Travel and
Attendance - 585 585
Awareness & Educational Campaign - 2,435 2,435
GM2 Company Consortium Support - 160 160
NTSAD - Research Conference Attendance - 190 190
Tay-Sachs and Sandhoff New Diagnosis
Packs - 4,433 4,433
2,287 6,386 8,673
TOTAL FUNDS 36,203 (18,559) 17,644

A current year 12 months and prior year 12 months combined net movement in funds, included in the above are as follows:

Incoming Resources Movement
resources expended in funds
£ £ £
Unrestricted funds
General fund 60,673 (85,618) (24,945)
Restricted funds
CAF COVID-19 Emergency Fund (1) (832) (833)
NLCF Family Support Officers Grant 53,267 (53,927) (660)
Translation of eAcademy App Grant 4,000 (3,924) 76
Azafaros - Clinician Toolkit 8,000 (8,000) -
WORLD Symposium Travel and
Attendance 6,352 (5,767) 585
Awareness & Educational Campaign 6,000 (3,565) 2,435
GM2 Company Consortium Support 7,500 (7,340) 160
NTSAD - Research Conference Attendance 2,000 (1,810) 190
Tay-Sachs and Sandhoff New Diagnosis
Packs 9,750 (5,317) 4,433
Virtual Tay-Sachs and Sandhoff Family
Conference 5,000 (5,000) -
101,868 (95,482) 6,386
TOTAL FUNDS 162,541 (181,100) (18,559)

continued...

Page 13

- Cure and Action for Tay Sachs (CATS) Foundation

Notes to the Financial Statements - continued for the Year Ended 30 June 2024

9. MOVEMENT IN FUNDS - continued

The restricted funds operating during the year were as follows:-

NLCF - We secured £66,000 for 3 years to pay for two Family Support Officers to work part-time in providing support, guidance and information to our community of patients and families. This was the second year of benefiting from the grant and we have submitted a request NLCF to increase the grant so that we can provide a total of 60hrs/week of support to our community.

In May 2023 the request was granted and we were awarded a further £13,572 to add to the £66,000 previously agreed.

For the financial year of 23/24 we received £31,485 towards our Family Support Officers work at the charity. The project ends in October 2024.

Sanofi Pobo Aventis Pharma contributed a total of £18,950 to multiple initiatives, including:

10. RELATED PARTY DISCLOSURES

There were no related party transactions for the year ended 30 June 2024.

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- Cure and Action for Tay Sachs (CATS) Foundation

Detailed Statement of Financial Activities for the Year Ended 30 June 2024

Detailed Statement of Financial Activities
for the Year Ended 30 June 2024
30.6.24 30.6.23
£ £
INCOME AND ENDOWMENTS
Donations and legacies
Donations 33,088 12,669
Grants 55,435 60,934
88,523 73,603
Investment income
Deposit account interest **301 ** 114
Total incoming resources 88,824 73,717
EXPENDITURE
Charitable activities
Family service 4,253 6,854
eAcademy App 873 322
Project costs 5,766 11,078
10,892 18,254
Support costs
Management
Wages 71,832 54,658
Pensions 1,578 1,489
Membership andl licences 1,131 1,225
Legal and professional fees 995 1,120
Postage and stationery 50 599
Office costs 52 37
Travel - 33
75,638 59,161
Information technology
Computer expenses 5,022 3,246
Other
Bank charges 126 -
Fixtures and fittings 504 562
Computer equipment **104 ** 91
734 653
Governance costs
Accountancy and IE fees 3,900 3,600
Total resources expended 96,186 84,914
Net expenditure (7,362) (11,197)

This page does not form part of the statutory financial statements

Page 15