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← Cystinosis Foundation Of The UK

2025-03-31-accounts

CYSTINOSIS FOUNDATION OF THE UK

Charity Registration Number 1074885

ACCOUNTS

For the year ended 31 March 2025

CYSTINOSIS FOUNDATION OF THE UK

Financial Statements for the year ended 31 March 2025

Contents

CYSTINOSIS FOUNDATION OF THE UK

Treasurer’s Report for the year ended 31 March 2025

The year ending 31 March 2025 has seen an increase in fundraising income compared to last year, mainly due to a couple of planned events by supporters, although as Will Newman mentions in the Trustees Report, there seems to be a general slow down in donations.

This year has seen the CNE International Conference being held in Manchester resulting in higher than usual expenditure. That being said, Net Income is still up 64% on last year.

We remain especially grateful to all the friends of Cystinosis who continue and devote considerable time to raising the profile of the Charity and to raising the very valuable funds.

We confirm that there are no serious incidents or other matters relating to our charity, over the financial year ended 31 March 2025 that should have been reported to the Charity Commission but have not. For clarification, serious incidents are defined as events that have caused or could cause harm to our charity.

Anne-Marie Sugden Treasurer

CYSTINOSIS FOUNDATION OF THE UK

Trustee's Report for the year ended 31 March 2025

Cystinosis Foundation UK aims to:

Improve: patient outcomes, treatments and research. Inform: patients, families and healthcare professionals. Share: stories, experiences and answers.

CF10 Drug Development (Major ongoing priority)

The foundation is heavily invested in CF10, a new treatment being developed at Sunderland/Durham University. Over the period, the project progressed from early purity issues to securing £4.2m MRC grant application (decision expected June 2025). Phase 1 trial planned to start September 2026 if funded. The foundation agreed to fund the £48k PALS (Pharmacology and Logistics Study) at the May 2025 meeting.

CNE International Conference July 2024

The foundation hosted a highly successful international conference with excellent feedback from clinicians, families, and patients. Key successes included the high-quality speakers, and strong interaction between clinicians, scientists, and families. It was good to see so many of the UK families able to attend. A new adult WhatsApp group with 27 members formed after the event. Conference videos were edited and posted to YouTube.

Procysbi

Ongoing efforts to secure NHS funding for Procysbi treatment in England and Scotland. The NICE process for NHS England funding was ongoing, with positive clinical panel response recommending routine commissioning. Despite previous setbacks, there are still hopes that an application to the Scottish Medicines Consortium can prove successful.

Trustee Changes

Neil Sugden retired after years of service. Two new trustees joined: Tom Kelly and Avril Biss (introduced November 2024, formally appointed early 2025). The foundation will need to find a new treasurer as Anne-Marie Sugden is also retiring. Banking signatories are to be updated accordingly.

Operational Developments

Clinical Relationships

Strong partnerships developed with Clinical Nurse Specialists across hospital hubs, with regular cross-hub meetings showing improvement. The foundation attended annual hub meetings and CNS meetings, providing patient perspective. Recordati (pharmaceutical company) selected CFUK as charity of the year and is working on improving eye treatment products based on patient feedback.

Financial Position

As of February 2025, the foundation had £218,627 in the bank. Major fundraising included £4,000+ from London Marathon runner. The foundation is concerned about declining JustGiving donations and agreed to be more active in promoting fundraising on social media.

We are grateful for the all support we have received from developing partnerships and from the cystinosis community. Fund raisers and awareness raisers are doing a fantastic job to ensure that the charity can continue to improve and inform and share.

Will Newman

On behalf of the Trustees

CYSTINOSIS FOUNDATION OF THE UK

INFORMATION

Name Cystinosis Foundation of the UK
Charity Registration Number 1074885
Address of the Principal Office Unit 81304
PO Box 15113
Birmingham
B2 2NJ
Trustees Will Newman (Chair)
David Benford
Tom Kenning
Alex Hutchison
Karthik Ekambaram
Kirsty Biss
Thomas Kelly
Trust Deed Dated 2 February 1998
Objectives To provide support, education,
research support and
co-operation to Cystinosis
sufferers and their immediate
families.

CYSTINOSIS FOUNDATION OF THE UK

INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 MARCH 2025

INCOME
Personal Donations
Corporate Donations
Fund Raising
Bank Interest
Tax Repayments
EXPENDITURE
Membership fees
Travelling and Conferences
Telephone
Office & Fundraising Expenses
NET INCOME
TRUSTEES EQUITY brought forward
CAPITAL DISTRIBUTIONS (see notes)
TRUSTEES EQUITYcarried forward		 2025
3,465.00
6,392.93
24,573.31
0.00
0.00
34,431.24
50.00
16,406.00
92.60
2,689.08
19,237.68
15,193.56
207,022.98
0.00
222,216.54		 2024
3,505.00
0.00
16,496.66
1,081.99
0.00
21,083.65
50.00
10,592.28
0.00
1,157.50
11,799.78
9,283.87
201,972.20
4,233.09
207,022.98		 2024

CYSTINOSIS FOUNDATION OF THE UK

BALANCE SHEET FOR YEAR TO 31 MARCH 2025

----- Start of picture text -----
2025 2024
CURRENT ASSETS
Cash at Bank 222,216.54 207,022.98
DEBTORS 0.00 0.00
222,216.54 207,022.98
CREDITORS 0.00 0.00
NET ASSETS 222,216.54 207,022.98
Represented by:-
TRUSTEES EQUITY 222,216.54 207,022.98
Rov — H
Chairman Treasurer
----- End of picture text -----

CYSTINOSIS FOUNDATION OF THE UK

Notes to The Accounts dated 31 March 2025

Funds Specifically Allocated for Research

The University of Sunderland

The Trustees have continued to provide financial support for the research being carried out at the University of Sunderland.

UK Conference

The Trustees have contributed £14,200 towards the Cystinosis UK Conference during the financial year

No funds were specifically allocated at the year-end beyond what is presented in these financial statements.

Reserve Policy

Future commitments are only entered into once fund raising has covered the obligations.

Independent examiners report to the trustees of Cystinosis Foundation of the UK

I report to the trustees on my examination of the accounts of the Cystinosis Foundation of the UK for the year ended 31[st] March 2025.

Responsibilities and basis of report

As the charity’s trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent Examiners Statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect;

  1. Accounting records were not kept in respect of the Trust as required by section 130 of the Act; or

  2. The accounts do not accord with those records.

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable proper understanding of the accounts to be reached.

Signed:

Name: Louisa Poole

Date: 02/02/2026

2025 Accounts Final-combined (1)

Final Audit Report

2026-02-02

Created: 2026-02-02 By: Anne-Marie Sugden (a.sugden@harlowbros.co.uk) Status: Signed Transaction ID: CBJCHBCAABAAaZ7J3SVAniEZIrle_Q2-Aq-xee3IH6X3

"2025 Accounts Final-combined (1)" History

Document emailed to Will Newman (will@cystinosis.org.uk) for signature 2026-02-02 - 1:43:41 PM GMT

Agreement completed.

2026-02-02 - 3:31:58 PM GMT