Charity No: 1151919
Trustees’ Annual Report & Statement of Financial Activity for the Year Ended 1 April 2025
Trustees
Sinéad James Christopher James Kirstilee Tomlin
January 2026
CPA Research Foundation
Trustees’ Annual Report & Statement of Financial Activity for the Year Ended 1 April 2025
Contents
| Contents | Contents | |
|---|---|---|
| 1 | Reference and Administration Details .......................................................... 3 | |
| 1.1 | Charity Name & Registration ............................................................................ 3 | |
| 1.2 | Charity’s Address ............................................................................................... 3 | |
| 1.3 | Names of the Trustees Who Manage the Charity ............................................. 3 | |
| 1.4 | Names of Advisors & Senior Members of Staff ................................................. 3 | |
| 1.5 | Bank ................................................................................................................... 3 | |
| 2 | Structure, Governance & Management ........................................................ 3 | |
| 2.1 | Type of Governing Document ........................................................................... 3 | |
| 2.2 | Charitable Objects ............................................................................................. 3 | |
| 2.3 | Trustee Selection Methods ............................................................................... 4 | |
| 3 | Activities, Achievements & Performance ..................................................... 4 | |
| 3.1 | Statutory Declaration ........................................................................................ 4 | |
| 3.2 | Overview ........................................................................................................... 4 | |
| 3.3 | Activities, Achievements & Performance .......................................................... 4 | |
| 3.4 | How the Public Have Benefitted. ...................................................................... 4 | |
| 3.5 | Trustee Development........................................................................................ 5 | |
| 3.6 | Looking Ahead ................................................................................................... 5 | |
| 4 | Financial Review .......................................................................................... 5 | |
| 4.1 | Details of Any Funds Materially in Deficit ......................................................... 5 | |
| 4.2 | Policy on Reserves ............................................................................................. 5 | |
| 4.3 | Principal Sources of Funding and Outgoings ..................................................... 5 | |
| 4.4 | Remuneration of Trustees ................................................................................ 5 | |
| 4.5 | Financial Status ................................................................................................. 6 | |
| 4.6 | Statutory Statements on Liabilities ................................................................... 6 | |
| 5 | Statement of Financial Activity ..........................Error! Bookmark not defined. | |
| 5.1 | Receipts & Payments During the Financial Year Ended 1-Apr-25Error! Bookmark not | |
| defined. | ||
| 5.2 | Notes to the Accounts ....................................................................................... 7 |
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Trustees Annual Report & Statement of Financial Activity for the Year Ended 1 April 2025
1 Reference and Administration Details
1.1 Charity Name & Registration
CPA Research Foundation
The charity is a Charitable Incorporated Organisation, registration no: 1151919, registered with the Charity Commission on 29 September 2020.
1.2 Charity’s Address
66 Highfield Road, Romford, Essex, RM5 3SA
e-mail: hello@cparfoundation.org website: www.cparfoundation.org
1.3 Names of the Trustees Who Manage the Charity
| Name | Office | Appointed | Resigned |
|---|---|---|---|
| Sinéad James | Chair | 29 September 2020 | - |
| Christopher James | Treasurer | 29 September 2020 | - |
| Rabia Harrison | 29 September 2020 | - 29 September 2024 | |
| Kirstilee Tomlin | 29 September 2024 | - |
1.4 Names of Advisors & Senior Members of Staff
None
1.5 Bank
Barclays Bank, 93 High Road, Ilford, Essex, IG1 1DE
2 Structure, Governance & Management
2.1 Type of Governing Document
Constitution – based on the Charity Commission’s model governing document for Foundation Charitable Incorporated Organisations, ie: where the Trustees are the only Members of the charity.
2.2 Charitable Objects
Such purposes as are exclusively charitable for the public benefit as the trustees shall see fit.
a) For the public benefit the promotion and protection of good physical and mental health of sufferers of Cerebral Proliferative Angiopathy living in England and Wales in particular but not exclusively through assisting in the provision of funding for research into the diagnosis, treatment and management of Cerebral Proliferative Angiopathy.
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b) To relieve the needs of sufferers of Cerebral Proliferative Angiopathy and their families and carers living in England and Wales by the provision of practical support and by raising awareness and understanding within the general public about Cerebral Proliferative Angiopathy.
2.3 Trustee Selection Methods
There must be at least three charity trustees. The maximum number of trustees is 12.
In accordance with the Constitution, Trustees are appointed or re-appointed for a term of two years by a resolution passed at a properly convened meeting of the charity trustees.
In appointing Trustees due consideration is given to ensuring that the Trustees have, between them, the skills and experience necessary to manage the charity effectively and in accordance with charity law.
3 Activities, Achievements & Performance
3.1 Statutory Declaration
The Trustees confirm that they have paid due regard to the guidance issued by the Charity Commission on public benefit in deciding what activities the charity should undertake.
3.2 Overview
About CPA
Cerebral Proliferative Angiopathy (CPA) is an extremely rare disease. It is thought that 3.4% of Arteriovenous Malformation (AVM) sufferers are diagnosed as having CPA. Currently, there are no known research activities being undertaken to develop much needed therapies to control the disease. In addition, before CPA Research Foundation was established, CPA did not have an online support network, like many other neurological diseases. It is our mission to establish CPA Research Foundation as the number one global charity for CPA research and awareness. Over the next five years we aim to focus on our top priorities as we fund research, develop new therapies and ultimately treat and cure the disease.
3.3 Activities, Achievements & Performance
CPA Research Foundation is the first of its kind. There are no other charities or organisations that have any affiliation with CPA. The charity works very closely with Great Ormond Street Hospital (GOSH) to bridge the gap between patients and clinical staff and acting as a Patient Advisory Group (PAG). As of 15 January 2026, Great Ormond Street Hospital has been officially approved to join the BLT Consortium Study focused on paediatric cerebral proliferative angiopathy (CPA)—an exciting step forward in global collaboration.
This approval means GOSH can now consent patients and share anonymized imaging and clinical data with Boston Children’s Hospital and The Hospital for Sick Children (SickKids) in Toronto. Together, the three centres will review cases, compare findings, and work as a team to better understand CPA.
The Charity has a fully functioning website which is updated regularly with any news we can share and where the public can make donations. We also have a social media presence (Facebook, Instagram, Twitter and LinkedIn, where people can find us). We have a small community of patients from across the globe connected via a private social media group where we can knowledge share and offer each other emotional support.
3.4 How the Public Have Benefitted.
The public have benefitted by having a website to visit, social media connections and a slowly growing community of other CPA patients to connect with. There is a planned retreat overnight stay
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planned for May 2025 which will see families coming together for the first time. They will be joined by Greg James, Neurosurgeon from GOSH and Sumira Riaz, Clinical Psychologist who will host sessions on living with CPA. This will be a milestone moment for us as a community.
3.5 Trustee Development
None to report.
3.6 Looking Ahead
Our priorities remain the same:
1. Community – Establish a registry of CPA patients. Key areas of focus : Build IT Infrastructure, Recruit a part time research assistant for routine maintenance.
2. Awareness - Develop a rigorous, consistent definition. Key areas of focus : Establish a clear, consistent definition to separate CPA from large diffuse AVMs.
3. Evidence – Document the natural history of CPA. Key area of focus: Find out what happens to patients with CPA, Look at genomic/tissue pathology of CPA.
4. Treatment – Work with experts to develop effective treatments. Key areas of focus: Investigate revascularisation surgery and other medical treatments.
4 Financial Review
4.1 Details of Any Funds Materially in Deficit
The Charity has no funds which are materially in deficit.
4.2 Policy on Reserves
The Charity’s policy on reserves is to generate and maintain a balance which is sufficient:
-
a) to preserve the financial viability of the Charity in the event that unforeseen and/or unavoidable circumstance precipitate a short-term fall in its income;
-
b) to enable the Charity, in the interests of meeting its objectives, to undertake from time to time the setting up of new and innovative projects on a pilot basis to demonstrate the viability and potential benefits of such activities as a precursor to securing the external funding necessary to maintain such projects on an on-going basis.
For these purposes the Charity will endeavour to generate and maintain reserves which are at least 50% of its annual expenditure.
4.3 Principal Sources of Funding and Outgoings
All donations for this financial year have come in via the website, paypal giving and fundraisers.
Fees for website hosting and donation platforms are currently the open outgoings for this financial year.
4.4 Remuneration of Trustees
All Trustees act in a voluntary capacity and receive no remuneration or other material benefits from their services to the Charity.
Out-of-pocket expenses necessarily and reasonably incurred by Trustees in promoting the purposes of the Charity are reimbursed at cost.
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4.5 Financial Status
The charity’s current resources from unrestricted and unrestricted donations are more than sufficient to meet its outgoings for at least next year.
All the indications are that this will remain the case for the foreseeable future.
4.6 Statutory Statements on Liabilities
The Trustees declare that:
-
The charity has given no guarantees where potential liability under the guarantee is outstanding at the date of this statement ( eg: any outstanding/ongoing contract or legal undertaking to buy or provide specific services);
-
The charity has no debt outstanding at the date of this statement which is owed by the CIO and which is secured by an express charge on any assets of the CIO ( eg: a mortgage on property owned by the charity);
Approved by the Trustees and signed on their behalf,
Sinéad James (Chair) Date: 28-01-26
5 STATEMENT OF FINANCIAL ACTIVITIES (SOFA)
For the year ended 01 April 2025
5.1 Income and endowments
| Income source | £ |
|---|---|
| Donations and legacies | 0 |
| Charitable activities (grants/fees) | 0 |
| Other trading activities (fundraising) | 4,542.49 |
| Other income | 0 |
| Total income | 4,542.49 |
| .2 Expenditure | |
| Expenditure category | £ |
| Raising funds | 0 |
| Charitable activities (project costs) | 3,694.21 |
| Governance (accountancy/legal/Admin) | 691.91 |
| Trustee Expenses | 232.31 |
| Total expenditure | 4,618.43 |
5.2 Expenditure
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5.3 Net movement of funds
£ Total income 4,542.49 Less: Total expenditure 4,618.43 Net deficit for the year 75.95 Funds reconciliation £ Funds brought forward 5,468.10 Net movement in year -75.00 Funds carried forward 5,393.10
5.4 Funds reconciliation
Note: All funds held by the charity during the year were unrestricted.
5.4.1 Statement of Assets and Liabilities
5.4.2 Disposition of Funds
The Charity has no designated or restricted funds
5.4.3 Approval of the Board of Trustees
The Trustees declare that they have approved the above Annual Report & Statement of Financial Activity.
Signed on behalf of the Trustees
Christopher James, Treasurer
Date: 28-01-26
5.5 Notes to the Accounts
-
a) Accounting Policies
-
The financial statements have been prepared in accordance with the Charities Act 2011 Section 133.
-
b) Reimbursement of Out-of-Pocket Expenses
-
Out-of-pocket expenses necessarily, reasonably and incidentally incurred by Trustee in the course of their duties as Trustees are reimbursed in accordance with the prevailing Financial Policies & Procedures.
-
c) Salaries & Professional Fees
No trustee receives any payments for the services they provide to the charity. In the current financial year the charity employed no staff or external contractors;
- d) Fixed Assets
The charity has not purchased or disposed of any fixed assets in the current financial year;
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e) Creditors
Cheques issued prior to the end of the financial year but not appearing in the end of financial year bank statement are only reported as outstanding creditors if they remain unpresented at the time of producing the financial statements.
- f) Rounding Discrepancies
All amounts are recorded to the penny, but in these accounts are shown as digitally rounded to the nearest pound. This can occasionally result in a total apparently not being the sum of its constituent amounts. All individual amounts, and their totals, are nevertheless correct.
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