**Trustees' Annual Report for the period** 


**From** 

Period start date Period end date **01 10 2022 30 09 2023** 

**To** 

## Section A                        Reference and administration details 

**Charity name** Cavernoma Alliance UK 

**Other names charity is known by** CAUK 

**Registered charity number (if any)**[England and Wales 1197257 ] Scotland SC048458 

**Charity's principal address** Po Box 366 

Watlington Oxfordshire **Postcode** OX10 1GF 

## **Names of the charity trustees who manage the charity** 


**----- Start of picture text -----**<br>
Name of person (or body)<br>Dates acted if not for<br>Trustee name  Office (if any)  entitled to appoint trustee<br>whole year<br>(if any)<br>1 Heather Dunbar (C)  Chair<br>2 Mark Farrar (F)  Treasurer<br>3 Barbara Edmonds (F)<br>4 Jade Davies (C)<br>5 Roxanna Dixon (C)<br>6 Emily Fletcher  Appointed 01.10.23<br>7 Alex Ford  Appointed 01.10.23<br>8 Sian Oliphant  Treasurer  Appointed 01.02.23<br>Resigned 18.05.23<br>9 Lee Smith (F)  Resigned 24.06.23<br>10 Sharon Veiger (F)  Resigned 24.06.23<br>11 David White (F)  Resigned 31.12.23<br>**----- End of picture text -----**<br>


Cavernoma Alliance UK is a charity run by and for the cavernoma community.  Given the importance of lived experience we pride ourselves on having a Board of Trustees that is reflective of the community we support. 

C = Trustee with cavernoma 

F = Trustee who has immediate family with cavernoma. 

**Names of the trustees for the charity, if any, (for example, any custodian trustees)** 

|**Name**|**Dates acted if not for whole year**|
|---|---|
|N/a|N/a|



1 



## **Names and addresses of advisers (Optional information)** 


**----- Start of picture text -----**<br>
Type of adviser Name Address<br>Clinical Medical  Professor Rustam Al- University of Edinburgh<br>Advisor  Shahi Salman<br>Clinical Medical  Mr Neil Kitchen  National Hospital for Neurology and Neurosurgery<br>Advisor<br>**----- End of picture text -----**<br>


## **Name of chief executive or names of senior staff members (Optional information)** 

Joanne Noakes, CEO (Left 30[th] July 2023) 

Helen Evans, Charity Manager (Started 1[st] January 2023) 

## **Section B              Structure, governance and management** 

## **Description of the charity’s trusts** 

Constitution Type of governing document (eg. trust deed, constitution) Charitable Incorporate Organisation (CIO) How the charity is constituted 

- (eg. trust, association, company) 

Elected / re-elected at Annual General Meeting Trustee selection methods Between AGMs, can be elected by the Board (eg. appointed by, elected by) 

## **Additional governance issues (Optional information)** 

You **may choose** to include additional information, where relevant, about: 

- policies and procedures adopted for the induction and training of trustees; 

- the charity’s organisational structure and any wider network with which the charity works; 

- relationship with any related parties; 

- trustees’ consideration of major risks and the system and procedures to manage them. 

## **Section C                    Objectives and activities** 

**Summary of** 1. To promote and protect the physical and mental health of those with cavernoma **the objects of** through the provision of support, education, research and practical advice. **the charity set** 2. To advance the education of the general public in all areas relating to cavernoma. **out in its governing document** 

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**Summary of the main Cavernoma activities** Cavernomas look like raspberries and are found in the brain and spinal cord.  They're **undertaken for** formed of abnormal blood vessels with thin leaky walls, which can bleed at any age **the public** without warning.  1 in 625 people are thought to have a cavernoma, and whilst most **benefit in** people won't experience symptoms 1 in 2,700 do.  Symptoms can include haemorrhages, **relation to** seizures and other neurological problems.  Treatment involves 'wait and see', **these objects** neurosurgery or stereotactic radiosurgery; with no medications currently available **(include within this section the Cavernoma Alliance UK statutory** Cavernoma Alliance UK was founded in 2005 by Dr Ian Stuart after his life changed over- **declaration** night following a devastating cavernoma bleed.  Lacking information and support **that trustees** networks, he resolved to make sure that no-one else faced cavernoma alone.  What **have had** started as a helpline run from Ian's bedroom quickly became a national **regard to the** charity.  Cavernoma Alliance UK's mission is to find a cure for cavernoma and it works to **guidance** do this by promoting research and providing educational information and support services **issued by the** to people living with the condition. **Charity Commission Summary of 2022-23 on public** Cavernoma Alliance UK (CAUK) remains in the process of changing its legal entity from **benefit)** an unincorporated charity (charity registration number 1114145) to a Charitable Incorporated Organisation (charity registration number 1197257).  The transfer of assets from the unincorporated charity to the CIO and closure of the unincorporated charity will be completed by 30.09.24.  In the meantime, for this reporting period 01.10.21 to 30.09.22 the CIO has been dormant and there are no activities to report 

You **may choose** to 

include further statements, where relevant, about: 

 policy on grantmaking; 

 policy 

programme related investment; 

 contribution made by volunteers. 


Section D                      Achievements and performance **Summary of the main achievements of the charity during the year** 

3 




**CAVERNOMA ALLIANCE UK 1197257 Receipts and payments accounts CC16a For the period 01/10/2022 30/09/2023 To from** 


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Section A Receipts and payments<br>Unrestricted  Restricted  Endowment<br>Total funds Last year<br>funds funds funds<br>to the nearest<br>to the nearest £ to the nearest £ to the nearest £ to the nearest £<br>£<br>A1 Receipts<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>Sub total  (Gross income for<br>AR)                               -                             -                               -                               -                              -<br>A2 Asset and investment sales,<br>(see table).<br>                             -                               -                               -                             -<br>                             -                               -                               -                             -                                -<br>Sub total                               -                               -                               -                             -                                -<br>Total receipts                           -                            -                            -                             -                             -<br>A3 Payments<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>                             -                             -                               -                               -                              -<br>Sub total [                             - ]                            -                               -                               -                              -<br>A4 Asset and investment<br>purchases, (see table)<br>                             -                               -                               -                             -<br>                             -                               -                               -                             -<br>Sub total [                             - ]                              -                               -                             -                                -<br>                          -                            -                            -                             -                             -<br>Total payments<br>Net of receipts/(payments)                           -                          -                            -                            -                          -<br>A5 Transfers between funds                           -                          -                           -                               -                          -<br>A6 Cash funds last year end                            -                          -                           -                            -                          -<br>Cash funds this year end                           -                          -                            -                           -                          -<br>**----- End of picture text -----**<br>


CCXX R1 accounts (SS) 

14/06/2024 

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|**Section B Statement of assets and liabilities at the end of the period**|**Section B Statement of assets and liabilities at the end of the period**|**Section B Statement of assets and liabilities at the end of the period**|**Section B Statement of assets and liabilities at the end of the period**||
|---|---|---|---|---|
|**Categories**<br>**B5 Liabilities**<br>**B3 Investment assets**<br>**B2 Other monetary assets**<br>**B4 Assets retained for the**<br>**charity’s own use**<br>**B1 Cash funds**<br>CCXX R2 accounts (SS)|**Details**<br>**Details**<br>**_Total cash funds_**<br>(agree balances with receipts and payments<br>account(s))<br>**Details**<br>**Details**<br>**Details**<br>2|**Unrestricted**<br>**funds**<br>**to nearest £**<br>**-**<br>**-**<br>**-**<br>**-**<br>OK<br>**Unrestricted**<br>**funds**<br>**to nearest £**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**Fund to which**<br>**asset belongs**<br>**Fund to which**<br>**asset belongs**<br>**Fund to which**<br>**liability relates**|**Restricted**<br>**funds**<br>**to nearest £**<br>**-**<br>**-**<br>**-**<br>**-**<br>OK<br>**Restricted**<br>**funds**<br>**to nearest £**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**Cost (optional)**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**Cost (optional)**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**Amount due**<br>**(optional)**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>|**Endowment**<br>**funds**<br>**to nearest £**<br>**-**<br>**-**<br>**-**|
|||||**-**|
|||||OK|
|||||**Endowment**<br>**funds**<br>**to nearest £**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**Current value**<br>**(optional)**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**Current value**<br>**(optional)**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**-**<br>**When due**<br>**(optional)**<br>14/06/2024|





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