## **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.| |---|---|---| 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.| |---|---|---|---| ||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:||| |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|| |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** **----- Start of picture text -----**
1184406
**----- End of picture text -----**
## **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**
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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