Trustees’ Annual Report for the period
From 18/10/2022 Period start date To 30/06/2023 Period end date
Charity name:
Charity registration number:
Objectives and Activities
| SORP reference | ||
|---|---|---|
| Summary of the purposes of the charity as set out in its governing document |
Para 1.17 | The objectives in the constitution document which governs the charity is the relief of sickness and the preservation of good health among sufferers of Tay-Sachs and Sandhoff disease. |
| Summary of the main activities in relation to those purposes for the public benefit, in particular, the activities, projects or services identified in the accounts. |
Para 1.17 and 1.19 |
- Support research through grants - Support patients and families by educating, empowering and connecting them - Provide equipment to improve the sufferer’s quality of life |
| Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit |
Para 1.18 | The trustees are responsible for the preparation of financial statements for each financial period which give a true and fair view of the charity’s incoming resources and application of resources during the year, and of its state of affairs at the period end. In preparing these financial statements the trustees are required to: • Select suitable accounting policies and then apply them consistently; • Make judgments and estimates that are reasonable and prudent; • State whether applicable accounting standards and statements of recommended practice have been followed, subject to any material departures disclosed and explained in the financial statements; and • Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation. |
Additional information (optional) You may choose to include further statements where relevant about:
SORP reference
| Policy on grant making | Para 1.38 | Our research grant making policy is based on our donations to the research into a potential treatment for Tay-Sachs and Sandhoff disease. Grant applications are submitted to the charity directly for review by the trustees and a funding decision is agreed. The charity does run a grant call, and all grant applications are submitted on an ad hoc basis. Researchers from the UK and abroad are encouraged to apply for funding. The charity sets aside a maximum of 10% of all money raised during the year to be made available as a grant to research into a treatment for Tay-Sachs and Sandhoff disease. The charity is under no obligation to donate the full 10% of the money raised during the year and can use this to further other charitable objectives. As is our standard practice, the research grant policy will be reviewed on a yearly basis depending on our activity levels and fundraising. |
|---|---|---|
| Policy on social investment including program related investment |
Para 1.38 | Our equipment funding policy is based on an allocation basis per family who are a member of The CATS Foundation. To become a member, families complete a short form which contains their contact details and the way their family is affected by Tay-Sachs or Sandhoff disease. Each family is allocated £250 which can be used for equipment through the financial year of the charity. Families must apply through our grant making application form which details the costs and type of equipment they require, and it is up to the trustees to approve or refuse to provide funding. The charity has a stock of equipment which can be shared amongst members. All equipment which is purchased must be returned to the charity so that another family can benefit from it. Only direct family members can apply for equipment funding (i.e. the affected individual, their parents or main carer). All costs are approved by the trustees and they reserve the right to refuse funding if the equipment does not fall within the framework of what the charity deems reasonable. As is our standard practice, the reserve policy will be reviewed on a yearly basis |
depending on our activity levels and fundraising. Para 1.38 Contribution made by volunteers Other
Achievements and Performance
| SORP reference | ||
|---|---|---|
| Summary of the main achievements of the charity, identifying the difference the charity’s work has made to the circumstances of its beneficiaries and any wider benefits to society as a whole. |
Para 1.20 | 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. One of them has stared recruitment at the end of 2019 and is currently showing some promising results. Through the European Tay-Sachs Charity Consortium (ETSCC), we have established strong links with other charities in Europe so we can work together at finding a treatment for the diseases. We believe collaboration as a group with our US counterparts will also aid this process. This year has been marked by a strong response to the community´s needs as it reels back from the pandemic and what have been extremely difficult years. Our fundraising activities have certainly been affected by the cost-of-living crisis, as have our service users. We have trained and made our Family Support Officers available to provide extra support and care to all patients and families. Access to health and social service remains extremely difficult and frustratingand this is also hugely |
impacting time to diagnosis, that in turn severely affects patients and families´ ability to plan, to accept and the overall quality of life of the individual affected and those surrounding them. In May 2023 we applied to the National Lottery Community Fund to increase their grant in order to be able to offer more hours of support to our patients and community. This was accepted and increased to allow us to offer 60hrs of support per week.
Additional information (optional) You may choose to include further statements where relevant about:
| Achievements against objectives set |
Para 1.41 | |
|---|---|---|
| Performance of fundraising activities against objectives set |
Para 1.41 | |
| Investment performance against objectives |
Para 1.41 | |
| Other |
Financial Review
| Financial Review | ||
|---|---|---|
| Review of the charity’s financial position at the end of the period |
Para 1.21 | |
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | Our reserve policy is based on the charity being able to provide some level of support to families affected by Tay-Sachs. We have set a policy that requires: • Reserves to be maintained at a level which ensures that the charity’s core activity could continue during a period of unforeseen difficulty. |
| Amount of reserves held | Para 1.22 | £5,000.00 |
| Reasons for holding zero reserves |
Para 1.22 | |
| Details of fund materially in deficit |
Para 1.24 | |
| Explanation of any uncertainties about the charity continuing as a going concern |
Para 1.23 | No uncertainties 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. |
Additional information (optional) You may choose to include further statements where relevant about:
| The charity’s principal sources of funds (including any fundraising) |
Para 1.47 | |
|---|---|---|
| Investment policy and objectives including any social investment policy adopted |
Para 1.46 | |
| A description of the principal risks facing the charity |
Para 1.46 | |
| Other |
Structure, Governance and Management
| Description of charity’s trusts: |
||
|---|---|---|
| Type of governing document (trust deed, royal charter) |
Para 1.25 | Trust Deed Dated October 2022 |
| How is the charity constituted? (e.g unincorporated association, CIO) |
Para 1.25 | Charitable Incorporated Organisation |
| Trustee selection methods including details of any constitutional provisions e.g. election to post or name of any person or body entitled to appoint one or more trustees |
Para 1.25 | 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. |
Additional information (optional) You may choose to include further statements where relevant about:
Policies and procedures adopted for the induction Para 1.51 and training of trustees The charity’s organisational structure and any wider Para 1.51 network with which the charity works Relationship with any related Para 1.51 parties Other
Reference and Administrative details
| Charity name | Cure and Action for Tay-Sachs (CATS) Foundation |
|---|---|
| Other name the charity uses | |
| Registered charity number | 1200737 |
| Charity’s principal address | Suite 3 Peel House 30 The Downs ALTRINCHAM Cheshire WA14 2PX |
Names of the charity trustees who manage the charity
| 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 |
Trustee name | Office (if any) | Dates acted if not for whole year |
Name of person (or body) entitled to appoint trustee (if any) |
|---|---|---|---|---|
| Llywelyn ap Gwilym |
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| Kathryn Lewi | ||||
| Daniel How | ||||
| Shara Choudhury | ||||
– Corporate trustees names of the directors at the date the report was approved
Director name
Name of trustees holding title to property belonging to the charity
Trustee name Dates acted if not for whole year
Funds held as custodian trustees on behalf of others
Description of the assets held in this capacity
Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for safe custody and segregation of such assets from the charity’s own assets
Additional information (optional)
Names and addresses of advisers (Optional information)
| Names and addresses of advisers (Optional information) | Names and addresses of advisers (Optional information) | Names and addresses of advisers (Optional information) |
|---|---|---|
| Type of adviser Name Address |
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| Name of chief executive or names of senior staff members (Optional information) | ||
Exemptions from disclosure
Reason for non-disclosure of key personnel details
Other optional information
Declarations
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
| Signature(s) Full name(s) Position (eg Secretary, Chair, etc) Date |
Daniel How (Apr 29, 2024 17:57 GMT+1) | ||
|---|---|---|---|
Daniel How |
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29 April 2024 |
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29 April 2024 |
Cure and Action for Tay-Sachs (CATS) Foundation No (if any) Receipts and payments accounts CC16a For the period 10/18/2022 6/30/2023 To from
Section A Receipts and payments
| Section A Receipts and payments | ||||
|---|---|---|---|---|
| A1 Receipts 5,000 - - - - - - - 5,000 - - Sub total - Total receipts 5,000 A3 Payments No transactions - - - - - - - - - Sub total - - - Sub total - Total payments - Net of receipts/(payments) 5,000 A5 Transfers between funds - A6 Cash funds last year end - Cash funds this year end 5,000 Unrestricted funds to the nearest £ Cure and Action for Tay-Sachs (CATS) Foundation (1144543) transfer of funds for set up Sub total(Gross income for AR) A2 Asset and investment sales, (see table). A4 Asset and investment purchases, (see table) |
to the nearest £ Restricted funds |
to the nearest £ Endowment funds |
Total funds to the nearest £ |
Last year to the nearest £ |
| - - - - - - - - - |
- - - - - - - - - |
5,000 - - - - - - - 5,000 |
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| - | - | 5,000 | - | |
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5,000 - - 5,000 |
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Section B Statement of assets and liabilities at the end of the period
| Categories B1 Cash funds B2 Other monetary assets B3 Investment assets B5 Liabilities B4 Assets retained for the charity’s own use Signed by one or two trustees on behalf of all the trustees |
Details Details Details Details Details Signature Total cash funds (agree balances with receipts and payments account(s)) |
to nearest £ to nearest £ - - - - - - 5,000 - OK OK to nearest £ to nearest £ - - - - - - - - - - - - Cost (optional) - - - - - Cost (optional) - - - - - - - - - - - - - - Print Name Daniel How Unrestricted funds Restricted funds Unrestricted funds Restricted funds Fund to which asset belongs Fund to which asset belongs Fund to which liability relates Amount due (optional) |
to nearest £ Endowment funds |
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| OK | |||
| to nearest £ Endowment funds |
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| Current value (optional) |
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| When due (optional) |
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| Date of approval |
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| Daniel How | 4/29/2024 | ||