## **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**<br>**body entitled to**<br>**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: 

- a copy of the current version of this constitution; and 

- a copy of the CIO’s latest Trustees’ Annual Report and statement of accounts. 

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) 



- Potential for long-term translation into a treatment for EI 

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: 

- set up charity status and registration with charity commission 

- set up bank account, paypal and GoFundMe accounts to enable donations 

- set up social media presence (Instagram and facebook) 

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**<br>**In(£)**|**Payments**<br>**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