Trustees’ Annual Report for the period
From Period start date 01/02/2024 To Period end date 31/01/2025
Charity name: Cavernoma Society
Charity registration number: 1184406
Objectives and Activities
| SORP reference | ||
|---|---|---|
| Summary of the purposes of the charity as set out in its governing document |
Para 1.17 | To provide information and support to those affected by cavernoma, and raise awareness of the condition. |
| 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 |
To raise awareness of cavernoma and support those affected through information and support groups and services. |
| Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit |
Para 1.18 | The trustees have run the charity as proposed in the governing document and have therefore met all of the key objectives set out by the charity. |
Additional information (optional)
You may choose to include further statements where relevant about:
| SORP reference | ||
| Policy on grant making | Para 1.38 | N/A |
| Policy on social investment including program related investment |
Para 1.38 | N/A |
| Contribution made by | Para | 1.38 | We are grateful to all of our volunteers | ||
| volunteers | who have worked hard to help us to run | ||||
| the charity and continue supporting | |||||
| members through our vital services. As | |||||
| a small charity with no paid employees | |||||
| we rely on volunteers and our trustees | |||||
| to run our charity. In particular thank you | |||||
| to Hannah Westbury, Karen Smallman, | |||||
| Paul, James and Lizzie Murray, Lisa | |||||
| Goldapple, Jessica Jones, Chloe | |||||
| Robson, Cena Jovanovska, Wayne and | |||||
| Michelle Wright, and all of our trustees. | |||||
| Other | We’d like to extend our thanks and gratitude to the following organisations and people for their generous donations. • The Knowle Golf Club and Ali Coombs for choosing us as charity of the Year and raising £5,000 Anne Flett, in memory of Dicky Flett, who donated £2200 Eva Mainwaring, who raised £3919 for us by walking several miles every day! Thank you to Hamilton Brown for providing pro-bono services and rebranding our charity. • Thank you to Hannah Westbury and the Cummins and friends for raising money by taking part in the Bradford Dragon Boat Race. •Thank you to Paul Smallman, Suzan Smallman, Karen Smallman, Gary Miller, Nigel Lawry, and Tracy Lawry for the Cornwall Trek and raising funds. •Thank you to JC Decaux for donating billboards for Raspberry Day Thank you to Michelle Bartholomew for your donation. Thank you to David James for a donation of £100. |
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|---|---|---|
Thank you to Eden trust for the generous donation. Thank you to Tracy Lewis, our Northern Irish representative and Jill O’Reilly, for helping us to launch the charity in Northern Ireland and the Republic of Ireland. Thank you to Dr Ellie Stankovska for donating her time and supervising our therapists. Thank you to our trustees. Thank you to Eva for raising over £3,000 Thank you to James and Lizzie Murray for the Crochetforcavernoma raffles. Thank you to everyone who took part in the Christmas raffle and raised £400. Thank you to Jess Jones for helping source raffle gifts Thank you to Independence at Home grant for helping us to support a member with home renovation to help her disability. Thank you to all of our podcast guests.
Achievements and Performance
SORP reference
Summary of the main Para 1.20 The Cavernoma Society had another achievements of the successful year supporting its charity, identifying the members and providing services that difference the charity’s really made a difference. work has made to the circumstances of its This year we had a full rebrand, with beneficiaries and any our iconic raspberry logo being wider benefits to society redesigned to represent people as a whole. hugging - showing our cavernoma community. We also have a brand new website (which is being designed), as well as new merchandise and a brand new colour-scheme! We are excited for the next stage of the charity’s growth.
Fundraising proved more difficult this year and we had to come up with new ways to raise funds. We sadly had no retreat this year - it had to be cancelled at the last minute due to our organiser getting seriously ill and having to be admitted to hospital.
We attended several PIP tribunals with members and WON all of them, meaning that our members have the right support in place.
Our free counselling service has helped even more people in crisis, and this year we saw roughly 80 members for counselling.This year we said goodbye to two therapists and gained one new trainee.
We were chosen as charity of the Year by the Knowle Golf club and also The Eden project, so received vital funds - thank you.
We once again celebrated our annual awareness day – Raspberry Day in September and were supported by JC Decaux, who donated more than 2,000 billboard marketing across the UK - helping raise awareness.
We also wrote many GP referral letters, Blue Badge support letters, and helped members to get a second opinion, genetic testing, and neuro rehab services.
We also took part in several fundraising events, including the London marathon, The Cornwall Trek, and The Bradford Dragon Boat race. Thank you to Anne Flett who donated £2200 in memory of her late husband Dicky Flett We’d like to share our condolences with Tracey Lawry and The Lassman family. This year we lost Nigel Lawry and Ben Lassman, who were avid supporters of the charity. We helped a member by securing grants to help her home renovation in order to aid her mobility. We helped several members to get a second opinion with Mr Mario Teo on the NHS.
Additional information (optional)
You may choose to include further statements where relevant about:
| Achievements against objectives set |
Achievements against objectives set |
We met our objectives, as we provided information, support, events, and raised awareness. Our Raspberry Day is having a bigger impact every year. This year’s billboard was designed by Hamilton Brown, and it looked incredible! Thank you to JC Decaux for helping us spread the word in The UK. Our founder went to Northern Ireland and met with ministers at Stormont with our Irish representative Tracy Lewis, with the aim of registering the charity in Ireland too. |
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|---|---|---|---|
| Achievements against objectives set |
Para 1.41 | We met our objectives, as we provided information, support, events, and raised awareness. Our Raspberry Day is having a bigger impact every year. This year’s billboard was designed by Hamilton Brown, and it looked incredible! Thank you to JC Decaux for helping us spread the word in The UK. Our founder went to Northern Ireland and met with ministers at Stormont with our Irish representative Tracy Lewis, with the aim of registering the charity in Ireland too. |
|
| Performance of fundraising activities against objectives set |
Para 1.41 | Fundraising has been difficult this year. People are being squeezed for money and therefore have less to donate. We also didn’t have our Facebook donate button (we are working to fix this), so we lost vital fundraising. We are looking at new ways to raise funds by giving members something back in return, like raffles etc. We are also taking part in bigger fundraising events, such as the London Marathon. |
|---|---|---|
| Investment performance against objectives |
Para 1.41 | N/A |
| Other | N/A |
Financial Review
| Financial Review | ||
|---|---|---|
| Review of the charity’s financial position at the end of the period |
Para 1.21 | The Charity is performing consistently and sustainably. We are incredibly grateful to our members for fundraising and keeping the charity going, as well as our volunteers and trustees who dedicate their time to the charity to make sure that it is delivering its objectives. |
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | Because we are only a small charity, we try to only hold back £500 in reserves to cover our website costs and annual insurance. |
| Amount of reserves held | Para 1.22 | £500 |
| 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 | We have no uncertainties about the charity continuing to operate as we are in a stable financial position. |
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 | At the moment, our principal source of funds is monies raised by our members. |
|---|---|---|
| Investment policy and objectives including any social investment policy adopted |
Para 1.46 | N/A |
| A description of the principal risks facing the charity |
Para 1.46 | We need to continue to encourage our members to keep fundraising. |
| Other | ||
| Structure, Governance and Management | ||
Description of charity’s trusts: |
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| Type of governing document(trust deed, royal charter) |
Para 1.25 | |
| How is the charity constituted? (e.g unincorporated association, CIO) |
Para 1.25 | CIO |
| 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 | Our Trustees are reviewed annually and we have to vote in a new trustee |
Additional information (optional)
You may choose to include further statements where relevant about:
| Policies and | Para 1.51 | Each trustee is sent the governing |
|---|---|---|
| procedures adopted | document and information from the | |
| for the induction and | Charity Commission. | |
| training of trustees |
| The charity’s organisational structure and any wider network with which the charity works |
Para 1.51 | We are run by trustees and have no employees. |
|---|---|---|
| Relationship with any related parties |
Para 1.51 | N/A |
| Other |
Reference and Administrative details
| Charity name | Cavernoma Society |
|---|---|
| Other name the charity uses |
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| Registered charity number | 1184406 |
| Charity’s principal address | 5 Riverdale Gardens, Twickenham, TW1 2BX |
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)
Name Address Type of adviser
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)
Marie Robinson Trustee
Full name(s) Position (eg Secretary, Chair, etc) Date: 29/11/2025
The Cavernoma Society
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1184406
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Receipts and payments accounts
CC16a
For the period 01/02/2024 31/01/2025 To from Unrestricted Endowment Restricted funds Total funds Last year funds funds to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £
Section A Receipts and payments
A1 Receipts
| A1 Receipts | ||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Member fundraising | - | 14,939- | - | -- | - | 14,939- | - | 31,691- | ||||||||||||
| Retreat deposits | - | -- | - | -- | ||||||||||||||||
| Merchandise Sales | - | 258- | - | -- | - | -- | - | 258- | - | 1,006- | ||||||||||
| Savings | - | -- | - | -- | - | -- | - | 5,000- | ||||||||||||
| - | -- | - | -- | - | -- | - | -- | - | -- | |||||||||||
| - | -- | - | -- | - | -- | - | -- | - | -- | |||||||||||
| - | -- | - | -- | - | -- | - | -- | - | -- | |||||||||||
| - | -- | - | -- | - | -- | - | -- | - | -- | |||||||||||
| - | 15,197- | - | -- | - | -- | - | 15,197- | - | 37,697- | |||||||||||
| Sub total(Gross income for AR) |
| Sub total(Gro | ss income for AR) | ||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| A2 Asset and investment sales, | |||||||||||||||||||||
| (see table). | |||||||||||||||||||||
| - | -- | - | -- | - | -- | - | -- | ||||||||||||||
| - | -- | - | -- | - | -- | - | -- | - | -- | ||||||||||||
| Sub total | - | -- | - | -- | - | -- | - | -- | - | -- | |||||||||||
| **Total receipts ** | - | 15,197- | - | -- | - | -- | - | 15,197- | - | 37,697- |
| **Total receipts ** | - | 15,197- | - | -- | - | -- | - | 15,197- | - | 37,697- | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| A3 Payments | |||||||||||||||||||||
| Running costs | - | 1,264- | - | -- | - | -- | - | 1,264- | - | 2,146- | |||||||||||
| Therapy | - | 5,932- | - | -- | - | -- | - | 5,932- | - | 2,920- | |||||||||||
| Postage | - | 59- | - | -- | - | -- | - | 59- | - | 328- | |||||||||||
| Services | - | 1,485- | - | -- | - | -- | - | 1,485- | - | -- |
CCXX R1 accounts (SS)
11/29/2025
1
| Retreats | - | -- | - | -- | - | -- | - | -- | - | 17,687- | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Chelsea Flower Show | - | -- | - | -- | - | -- | - | 15,827- | ||||||||||||
| misc | - | 6,688- | - | -- | - | -- | - | 6,688- | - | 2,862- | ||||||||||
| Merchandise | - | -- | - | -- | - | -- | - | 438- | ||||||||||||
| - | -- | - | -- | - | -- | - | -- | - | -- | |||||||||||
| **Sub total ** | - | 15,428- | - | -- | - | -- | - | 15,428- | - | 42,208- | ||||||||||
| A4 Asset and investment | ||||||||||||||||||||
| purchases, (see table) | ||||||||||||||||||||
| - | -- | - | -- | - | -- | - | -- | |||||||||||||
| - | -- | - | -- | - | -- | - | -- | |||||||||||||
| **Sub total ** | - | -- | - | -- | - | -- | - | -- | ||||||||||||
| **Total payments ** | - | 15,428- | - | -- | - | -- | - | 15,428- | - | 42,208- | ||||||||||
| **Net of receipts/(payments) ** | - | 231- | - | -- | - | -- | - | 231- | - | 4,511- | ||||||||||
| A5 Transfers between funds | - | -- | - | -- | - | -- | - | -- | - | -- | ||||||||||
| A6 Cash funds last year end | - | -- | - | -- | - | -- | - | -- | - | -- | ||||||||||
| **Cash funds this year end ** | - | 231- | - | -- | - | -- | - | 231- | - | 4,511- | ||||||||||
Section B Statement of assets and liabilities at the end of the period
| Unrestricted | Restricted funds | Restricted funds | Endowment | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Categories | Details | funds | funds | ||||||||||||
| to nearest £ | to nearest £ | to nearest £ | |||||||||||||
| B1 | Cash funds | - | -- | - | -- | - | -- | ||||||||
| - | -- | - | -- | - | -- | ||||||||||
| - | -- | - | -- | - | -- | ||||||||||
| Total cash funds | - | 4,724- | - | -- | |||||||||||
| (agree balances with receipts and payments account (s)) |
Agreement Error | OK | OK | ||||||||||||
| Unrestricted | Restricted funds | Endowment | |||||||||||||
| funds | funds |
CCXX R2 accounts (SS)
11/29/2025
2
| B2 Other monetary assets B3 Investment assets B4 Assets retained for the charity’s own use |
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CCXX R3 accounts (SS)
11/29/2025
3
| B5 Liabilities Signed by one or two trustees on behalf of all the trustees |
Details Signature |
Fund to which liability relates Amount due (optional) - -- - -- - -- - -- - -- Print Name Simona Stankovska Dr Marie Robinson |
When due (optional) |
|---|---|---|---|
| Date of approval | |||
| Simona Stankovska | 29/11/2025 | ||
| Dr Marie Robinson | 29/11/2025 |
CCXX R4 accounts (SS)
11/29/2025
4