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2025-04-05-accounts

Trustees Annual Report

EI Cure Project UK (Chairty number 1205112)

Period 10[th] October 2023 to 5[th] April 2025

Section A: Reference and administration details

Registered Chairty Name: EI Cure Project UK

Other names charity is known by: Not Applicable

Registered Charity number: 1205112

Registered Chairty Address: 12 Manor Fields, Alrewas, Staffordshire DE13 7DA

Names of Trustees who manage the charity:

Names of Trustees who manage the charity:
Name Ofice Period Name of person or
body entitled to
appoint Trustee
Andrew Sanderes Founder and Chair Wholeyear Not applicable
Catherine Lancashire Treasurer Wholeyear Andrew Sanders
Hannah Lark Trustee Wholeyear Andrew Sanders
Rhiannon Morgan Trustee Wholeyear Andrew Sanders

Section B: Structure, governance and management

Type of governing document: Constitution

How is the charity constituted: Charitable Incorporated Organisation (CIO) foundation Trustee selection methods: Appointed by Founder Trustee

Additional governance issues (Optional information):

The charity trustees will make available to each new charity trustee, on or before his or her first appointment:

The EI Cure Project UK was founded by 4 individuals who are dedicated to raising awareness of EI in the UK and are determined to raise funds to support both UK research and global research depending on where the most promising projects can be supported. All of our trustees have personal experience with EI; they either have EI themselves, or they are a parent to a child affected by EI. The EI Cure Project UK works closely with other EI Cure Project charities or not-for-profit organisations in Switzerland, Canada and USA; the trustees/directors of all 4 organisations meet every 3-6 months to discuss current fund raising and research grant proposals.

Section C: Objectives and activities

Summary of the objects of the charity set out in its governing document

The objects of the CIO are:

The relief of sickness and the promotion of good health for the public benefit by funding and supporting research into the causes and treatment of Epidermolytic Ichthyosis (“EI”) and publishing and disseminating the useful results thereof

The relief of sufferers of EI and their families and carers by the provision of grants to charities or other organisations that support other individuals affected by EI

To pay or apply capital and income to or towards the relief of sickness of persons with Epidermolytic Ichthyosis (“EI”) in particular but not exclusively by provision of support, advice and information for such persons, their families, carers and those working with affected individuals and the promotion of research into EI both in the UK and abroad and the public dissemination of the results thereof.

Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

To date, The EI Cure Project UK advanced its core mission by funding clinical research into EI conducted by a leading research institution. This grant supported investigations into the causes and treatment of EI, directly contributing to the charity’s objective of promoting good health for the public benefit through research. By directing resources towards institutional partners with expertise in dermatological and genetic research, EI Cure Project UK has helped establish a foundation for future discoveries that may ultimately benefit patients and families affected by this rare condition. The research funded during this period is expected to generated knowledge that will be published and disseminated to the scientific community and beyond, fulfilling the charities commitment to advancing the understanding of EI and supporting the relief of those affected by the disease.

Additional details of objectives and activities (Optional information)

Grants from the EI Cure Project UK are designed to provide funding for preclinical and translational research projects that aim to deliver clinical benefit for those affected with Epidermolytic Ichthyosis within 10-15 years. We give grants for PhD Scholarships or Post-Doctoral Research Projects supported by established research Institutions.

Awards are for a maximum of £100,000 for a PhD Scholarship over 3 years or £90,000 for Post-Doctoral projects over 2 years or the equivalent pro-rata amount for grants for shorter time-periods. The minimum grant duration is 1 year up to a maximum of 3 years and the maximum amount that can be requested for any one year is £33,300 for a PhD Scholarship or £45,000 for Post-Doctoral Projects.

All grant applications will be initially checked to confirm that eligibility criteria have been met. Applications will then be triaged by a small group of members of the EI Cure Project network (UK, USA, Canada and Switzerland). Triage reviewers will score the application form focusing on the following criteria:

○ Relevance of research question being asked for those affected with EI

○ Feasibility - can the aims and objectives be met within the time-frame and with the funding requested

○ Track record of the Lead Applicant with EI (or related disease) research

○ Potential for future progress (Procurement of further funding and

publication)

The applications approved by the triage group will then be sent to an external peer reviewer who will assess the overall quality of the application. They will receive the online application form, CVs and technical report. The best applications will be shortlisted and presented to the Trustees for approval. We aim to complete this process within 3 months of receiving the application.

Section D: Achievements and performance

Summary of the main achievements of the charity during the year

The EI Cure Project UK was set up in October 2023 specifically to raise funds to support research into Epidermolytic Ichthyosis (EI). The EI Cure Project UK recognises that there are many barriers to people with EI getting the support and care that they need in order to live with a good quality of life. EI is an “Orphan disease” because it affects so few people and this means that the cost for research outweighs the potential profit to be made from its treatment. This means there is no financial incentive for stakeholders to fund essential preclinical research. If we want better care for the EI Community, we need to fund the research ourselves, and this is the motivation behind the EI Cure Project UK.

In order to meet our charitable aims, we need to make every effort to improve the lives of everyone in our EI community. We plan to:

  1. Increase public awareness of EI and how living with a visible difference can affect Quality of Life (QoL);

  2. Encourage researchers, clinicians, and scientists to get involved in EI research and join our Research Alliance;

  3. Increase research activity for EI, and facilitate the involvement of affected individuals into the design of research for EI in order to ensure that research objectives are desirable;

  4. Improve the quality of care for the EI community by educating medical professionals on how to manage EI skin;

  5. Continue to manage and moderate a private social media support group for the EI Community which helps provide guidance and support on the everyday management of EI skin.

Main objectives for the period were:

During the period 10/10/23 to 05/04/25 the charity received a total of £69,749.09 in donations from the public, fundraising events organised by families affected by EI, legacy donations from wills and personal donations by trustees.

Using funds raised during the period, The EI Cure Project UK have been able to fund phase 1 of its first research project “Development of topical gene therapy for congenital Ichthyosis using herpes simplex virus based engineered virus-like particles (eVLPs)” run by Professor Wei-Li Di at the Department for Infection, Immunity & Inflammation Department at University College London (UCL). Phase 2 funding will be made available to UCL later in 2025.

Section E: Financial review

Brief statement of the charity’s policy on reserves

The charity currently does not have a financial reserve due to this being the first year of activity. Going forward a reserve policy will be reviewed annually at the end of the financial year.

Details of any funds materially in deficit

Not applicable

Further financial review details (Optional information)

The charity solely relies on donations from the public, fundraising events organised by families affected by EI, legacy donations from wills and personal donations by trustees. EI Cure Project UK does not currently have its own fundraising activities but relies on affected families creating their own fundraising events. Accounts can be viewed below.

Section F: Other optional information

Not applicable

Section G: Declaration

The trustees declare that they have approved the trustees’ report above. Signed on behalf of the charity’s trustees

Signature(s)
Full Name Catherine Lancashire Andrew Sanders
Position Treasurer Founder and Chair
Date 05/04/26 05/04/26

EI Cure charity commission return 10th October 2023 to 5th April 2025

Opening balance(£) 0
In(£) 69749.09
Out(£) 40750
Closing balance(£) 28999.09
Date Payments
In(£)		 Payments
Out(£)		 **Type **
2023
22-Dec 10 MD
22-Dec 360 OD
22-Dec 950 OD
22-Dec 1590.5 OD
22-Dec 3053.68 OD
22-Dec 5000 OD
27-Dec 5000 OD
27-Dec 5000 OD
28-Dec 9.64 S
28-Dec 25 OD
29-Dec 29.09 S
2024
02-Jan 29.21 S
02-Jan 102.48 S
05-Jan 24.32 S
08-Jan 20 OD
09-Jan 500 C
09-Jan 490.72 S
18-Jan 19.48 S
19-Jan 19.42 S
22-Jan 4.7 S
29-Jan 10 MD
29-Jan 14.25 S
29-Jan 19.42 S
20-Feb 25 OD
28-Feb 10 MD
01-Mar 5 OD
05-Mar 5000 OD
05-Mar 6006 G
06-Mar 965.72 S
07-Mar 5000 OD
11-Mar 1000 OD
18-Mar 96.15 S
18-Mar 96.15 S
22-Mar 97.9 S
25-Mar 150 OD
26-Mar 5000 OD
28-Mar 10 MD
28-Mar 5000 OD
02-Apr 255.15 S
05-Apr 490.72 S
10-Apr 9.61 S
19-Apr 100 OD
29-Apr 10 MD
01-May 285 OD
10-May 0.01 P
13-May 146.75 J
20-May 146.75 J
23-May 9.61 S
24-May 9.61 S
28-May 10 MD
28-May 20 OD
31-May 29.17 S
03-Jun 39.04 S
10-Jun 483.47 S
17-Jun 269.57 J
28-Jun 10 MD
01-Jul 131.39 S
01-Jul 196 J
08-Jul 297.04 J
09-Jul 48.72 OD
16-Jul 78.28 J
18-Jul 170.6 S
29-Jul 10 MD
30-Jul 117.2 S
31-Jul 87.01 S
08-Aug 158.37 G
12-Aug 470.68 J
14-Aug 97.9 S
19-Aug 28.7 S
20-Aug 141.24 J
23-Aug 68.34 S
27-Aug 105.73 S
27-Aug 507.29 J
28-Aug 10 MD
02-Sep 9.64 S
02-Sep 5000 OD
03-Sep 270.67 S
03-Sep 57.95 J
04-Sep 134.7 S
09-Sep 24.32 S
10-Sep 605.45 J
12-Sep 48.85 S
16-Sep 149.6 S
16-Sep 159.16 J
18-Sep 19.42 S
23-Sep 663.95 J
26-Sep 14.57 S
30-Sep 10 MD
30-Sep 404.63 J
07-Oct 73.27 J
17-Oct 50 MD
18-Oct 97.84 S
28-Oct 10 MD
04-Nov 33.73 J
18-Nov 50 MD
20-Nov 931.02 P
28-Nov 10 MD
02-Dec 156.35 P
05-Dec 19.25 S
12-Dec 34.13 S
13-Dec 1000 Ch
17-Dec 50 MD
19-Dec 20750 UCL
20-Dec 20000 UCL
24-Dec 89.48 S
30-Dec 10 MD
30-Dec 98.6 S
2025
02-Jan 583.8 P
03-Jan 1879 OD
06-Jan 58.66 S
17-Jan 50 MD
28-Jan 10 MD
03-Feb 157.56 P
03-Feb 266.58 S
06-Feb 49 S
10-Feb 94.81 S
14-Feb 9.61 S
17-Feb 18.76 S
17-Feb 50 MD
20-Feb 14.36 S
28-Feb 10 MD
03-Mar 9.38 S
03-Mar 93.75 P
17-Mar 50 MD
28-Mar 10 MD
31-Mar 254.46 J

END OF DOCUMENT

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examlner's Report Report to the trusteesl members of El Cure Project UK On accounts for the year ended 5" April 2025 Charity no (if any) 1205112 Set out on pages Not applicable I report to the trustees on my examination of the accounts of the above charity ("the Trust") for the year ended Responsibilities and As the charity trustees of the Trust, you are responsible for the preparation basis of report 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 the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. I have completed my examination. I confirm that no material matters have come to my attention (other than that disclosed below ") in connection with the examination which gives me cause to believe that in, any material respect: accounting records were not kept in accordance with section 130 of the Act or the accounts do not accord with the accounting records Independent examiner's statement I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached. Please delete the words in the brackets if they do not apply. Signed: Date: a51 cI12016 Name: Mark Lomas Relevant professional qualification(s) or body (if any): BA (Hons) Business Studies Former Corporate Banking Manager, Handelsbanken PIC Former member Chartered Institute of Banking Address: 7 Dark Lane Alrewas DE13 7AP IER October 2018

th 4 February 2026 Independent Examiners Report to the Trustees of El Cure Project ('the Charity,). I report to the charity trustees on my examination of the accounts of the Charity for the th th period covering 10 October 2023 to the 5 April 2025. I have conducted a review over this simplistic charitable incorporated organisation known as the El Cure Project UK (1205112) to the best of my ability and based on information and documents provided to me by Catherine Lancashire ('the Treasurer,). I have utilised guidance from CC32 Independent Examination of Charity Accounts in preparation of this document. This independent examination is required due to total income during the period in question exceeding £25,000 but not surpassing £250,000 where a professional audit would be required. l am not aware of and do not consider myself to have any conflict of interest in providing this independent examination. I was instructed to undertake this independent examination by the Treasurer and no fee has been charged for its preparation. I do not believe that the Charity is a subsidiary nor parent company and whilst close links are maintained with other Epidermolytic Ichthyoysis charities/organisations based around the world these are non-financial in nature. l am not aware of any related parties within the Board of Trustees. This is the first years return and therefore there are no previous recommendations to be actioned or ratifi'ed. No formal accounts are produced, with income and expenditure recorded via the cash-based receipts and payment accounting method produced via spreadsheet and does not utilise formal accountancy software. Due to the utilised method no estimates or judgements are made by the Treasurer. This is a simplistic approach but not unusual for a charity of this size and complexity but an area where specialised software maybe appropriate in the future as the Charity grows. There appears to be adequate financial controls/governance in place within the Charity with the Chair and Treasurer having sole access to the Bank account. It might be worth considering implementing payment thresholds or dual authority for payments as balances held continue to grow. Debit cards are held by both Chair and Treasurer and sufficient payment thresholds should also be considered for these payment methods. Having reviewed the bank account statements held with The Co-operative Bank, I have concluded that:

Funds received and paid out reflect the totals included within the financial document for the period. I cannot identify any payments made nor funds received from outside of the UK, however due to nature of online credits received, this cannot be ruled out entirely. I have not identified any related party transactions during the period and the Treasurer has also confirmed that none have taken place. The Charity does not operate any restricted funds. I have questioned the Treasurer about several material receipts and payments and am satisfied with the rational for all. No further explanation is required. Payments made during the course of the financial period in question both relate to a research project via The University College London in line with objectives of the CIC as set out in the organisations governing document. No other payments made during the period. Payments received into the account are made net of costs, and a record of these costs should be retained and reviewed periodically to ensure they are value for money. A financial reserve is not currently mandated by the CIO'S constitution, however this will be an area of discussion during the forthcoming financial year, however with no day to day expenses incurred by the Charity this is not an area of concern at present. The Treasurer has not highlighted any current or future risks to the Charity which could prevent it being a going concern. The Charity maintains healthy credit balances and at present has no on-going expenses. I believe that account records have been maintain in line with section 130 of the Charities Act 2011. I do not believe that any matters of concern have arisen as part of this independent examination. Mark Lomas Independent Examiner 7 Dark Lane Alrewas DE13 7AP