## **Trustees’ Annual Report for the period**
**From 13 July 2024 Period start date To 05 April 2025 Period end date**
## **Charity name: CRELD1 Warriors**
## **Charity registration number: 1209106**
## **Objectives and Activities**
||SORP reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|As a registered UK charity, our mission is to
provide support for families caring for a child
with CRELD1 gene mutations, to raise
awareness of this extremely rare disease
and to support vital medical research to help
us find an effective treatment.|
|Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or services
identified in the accounts.|Para 1.17 and
1.19|**Families Support/Information Services**
The charity provides a support group for
individuals and families affected by the
CRELD1 condition. We aim to provide the
latest information on the condition to families
and health professionals via our website and
social media.
**Educational Activities**
We continue to work on raising both public
awareness and education amongst key
medical professionals throughout the world,
so they can better understand the signs,
symptoms and medical diagnosis of
CRELD1. Speaking at medical and scientific
conferences provides opportunities to fulfil
our aims and objectives whilst developing
strategic partnerships with research facilities,
medical and pharmaceutical institutions, and
like- minded charitable bodies.
**Research**|
|||The charity has raised funds to pay for
research to be undertaken at The University
of Birmingham. We are also funding a
project with Unravel Biosciences, which uses
AI technology and nasal swabs from patients
with CRELD1 to find alternative treatments
targeted at the gene. We have to fund the
second half of this project in 2026.|
|---|---|---|
|Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|The Trustees consider the charity’s activities
are wholly in the public interest and
designed to benefit all those who suffer from
CRELD1, their families and medical
professionals dealing with this debilitating
condition, in line with the Charity’s
Commission guidance on ‘public benefit’|
## **Achievements and Performance**
||SORP reference|||
|---|---|---|---|
|Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20||The charity has been extremely successful
in its first year. We were able to start with
some small fundraising events, such as a
Great South Run and a sing-a-long hosted
by one of our trustees. In December 2024,
one of our parents - Oli Powell - who has a
child with CRELD1, took on an incredible
challenge of running 7 marathons in 7 days.
He raised approx £100,000 for the charity,
and also raised awareness with media
coverage, featuring on BBC Radio
Berkshire, The Daily Mail, Mail on Sunday,
and BBC Breakfast News.
https://www.dailymail.co.uk/health/article-
14189645/boy-disease-rare-27-people-
diagnosed.html|
We have been able to fund the start of a project with Dr Felix Chan at The University of Birmingham, with £20,000 to be donated to his project (currently donated £10,000) to begin his work collecting skin biopsies and creating a cell model. We are also looking to invest in a project with unravel biosciences (https://www.unravel.bio/), where we have collected nasal swabs from 17 patients around the world with CRELD1, and they will use an AI database to find therapeutics more targeted to this gene. We have funded half this project, with the second half due in 2026. Further funding to test safety of use of any therapeutics with this gene will likely also be needed. We hope to fund further research and find a treatment that is more effective at managing this condition, or even a gene therapy.
## **Additional information (optional)** You may choose to include further statements where relevant about:
|
Achievements against
objectives set|
Para 1.41||
|---|---|---|
|Performance of fundraising
activities against objectives
set|Para 1.41||
|Investment performance
against objectives|Para 1.41||
Other
## **Financial Review**
|**Financial Review**|||
|---|---|---|
|Review of the charity’s
financial position at the end
of the period|Para 1.21|Thanks to the great support from family and
friends, and other CRELD1 families, the
charity is in a great position with £94,922 in
funds in the charity account. This is enough
to cover our next stage of the project with
Unravel Biosciences (£25,000). We also
have many more upcoming fundraising
events planned for the rest of 2025.|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The purpose of the reserves is:
To fund working capital and time lags in the
receipt of promised funds.
To fund unexpected expenditure, e.g., when
projects overrun, or unplanned events occur.
To manage economic or regulatory changes
which may have unforeseen financial
consequences.
We assess the level of general reserve
needed by looking forward and considering
the risks to our funding balanced against our
expenditure commitments.
To ensure we can continue to operate in
accordance with our plans, we would look to
hold a general reserve in the range £10,000
- £12,000 to cover unfunded committed
costs for the next 6 months.|
|Amount of reserves held|Para 1.22|As of April 2025 our reserves are £94,922|
|Reasons for holding zero
reserves|Para 1.22|N/A|
|Details of fund materially in
deficit|Para 1.24|N/A|
|Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|Fundraising enough money to be able to
make the impact we want to make. Access
to grants is much harder than anticipated,
but something we are working on.|
|**Additional information (optional)**
You may choose to include further statements where relevant about:|**Additional information (optional)**
You may choose to include further statements where relevant about:|**Additional information (optional)**
You may choose to include further statements where relevant about:|
|---|---|---|
|The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|We are 100% funded by donations and
fundraising events.|
|Investment policy and
objectives including any
social investment policy
adopted|Para 1.46||
|A description of the principal
risks facing the charity|Para 1.46||
|Other|||
## **Structure, Governance and Management**
|Description of charity’s
trusts:|||
|---|---|---|
|Type of governing document
(trust deed, royal charter)|Para 1.25|CIO association constitution|
|How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|CIO association constitution (formed July
2024)|
|Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of|Para 1.25|By appointment of registered members at
general meetings and by Trustee|
any person or body entitled to appoint one or more trustees
## **Additional information (optional)** You may choose to include further statements where relevant about:
|
Policies and procedures
adopted for the induction and
training of trustees|
Para 1.51|
New trustees are asked to abide by a Code
of Conduct and are issued with Essential
Information for Trustees from the Charities
Commission, sign a Trustee Declaration and
complete a Fit and Proper persons form.|
|---|---|---|
|The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|CRELD1 is run on a voluntary basis.
Trustees consult on all significant matters of
policy formulation, family support and
methods of communication about CRELD1
information services to medical
professionals.
The Scientific Advisory Board remains in
place with 12 leading scientific advisors
helping us understand the research and
determine the most relevant use of funding.
The charity operates the following policies:
data, privacy, and accessibility.|
|Relationship with any related
parties|Para 1.51|The charity is a member of:
●
Genetic Alliance UK
●
UK Rare Epilepsies Together
network (UKRET)
●
Rare Epilepsy Network (REN)|
|Other|||
## **Reference and Administrative details**
Charity name CRELD1 Warriors
|Other name the charity uses||
|---|---|
|Registered charity number|1209106|
|Charity’s principal address|159 Reading Road South,
Fleet
Hampshire
GU52 6AQ|
**Names of the charity trustees who manage the charity**
|||**Trustee name**|**Office (if any)**|**Dates acted if not**
**for whole year**|**Name of person (or**
**body) entitled to**
**appoint trustee(if any)**|
|---|---|---|---|---|---|
||1
2
3
4
5
6|Jessica Clatworthy|||Co-founder|
|||Adam Clatworthy|||Co-founder|
|||Emma Court||||
|||Kate Edwards||||
|||Samantha Lusty||||
|||WIll Campbell||||
## – Corporate trustees names of the directors at the date the report was approved
## **Director name**
Name of trustees holding title to property belonging to the charity
**Trustee name Dates acted if not for whole year**
## **Funds held as custodian trustees on behalf of others**
Description of the assets held in this capacity
Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects
Details of arrangements for safe custody and segregation of such assets from the charity’s own assets
## **Additional information (optional)**
## **Names and addresses of advisers (Optional information)**
||**Type of adviser**
**Name**
**Address**|**Type of adviser**
**Name**
**Address**|**Type of adviser**
**Name**
**Address**|
|---|---|---|---|
|||||
|||||
|||||
|||||
||**Name of chief executive or names of senior staff members (Optional**
**information)**|||
|||||
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
## **Other optional information**
The CRELD1 Warriors Trustees would like to thank all their donors and volunteers for their support throughout the year. Special mention should go to our CRELD1 fundraising heroes during the period:
Oli Powell Samantha Lusty Kay White The family of Barry Martin
## **Declarations**
**The trustees declare that they have approved the trustees’ report above.**
**Signed on behalf of the charity’s trustees**
|||**Signature(s)**
**Full name(s)**
**Position (eg Secretary,**
**Chair, etc)**
**Date** 14/12/2025|**Signature(s)**
**Full name(s)**
**Position (eg Secretary,**
**Chair, etc)**
**Date** 14/12/2025||||
|---|---|---|---|---|---|---|
||||||||
|||||J Clatworthy||A Clatworthy|
||||||||
|||||Chair||Trustee|
||||||||
||||14/12/2025||14/12/2025||
**----- Start of picture text -----**
CRELD1 Warriors No (if any)
Receipts and payments
CC16a
accounts
Period start Period end
For the
date date
period To
from
13/07/2025 05/04/2025
Section A
Receipts and
payments
Unrestrict Restricte Endowme Total
Last year
ed funds d funds nt funds funds
to the to the to the to the to the
nearest £ nearest £ nearest £ nearest £ nearest £
**----- End of picture text -----**
|**A1 Receipts**|||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
|Donations|**104,922**||**-**||**-**||**104,922**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
|**_Sub total(Gross_**
**_income for AR)_**|**104,922**||**-**||**-**||104,922||**-**||
||||||||||||
|**A2 Asset and**
**investment sales,**
**(see table).**|||||||||||
||**-**||**-**||**-**||**-**||||
||**-**||**-**||**-**||**-**||**-**||
|**_Sub total_**|**-**||**-**||**-**||**-**||**-**||
||||||||||||
|**_Total receipts_**|**104,922**||**-**||**-**||**104,922**||**-**||
||||||||||||
|**A3 Payments**|||||||||||
|Birmingham University|**10,000**||**-**||**-**||10,000||**-**||
||||**-**||**-**||||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
||**-**||**-**||**-**||**-**||**-**||
|**_Sub total_**|**10,000**||**-**||**-**||10,000||**-**||
||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
|**A4 Asset and**
**investment**
**purchases, (see**
**table)**|||||||||||
||**-**||**-**||**-**||**-**||||
||**-**||**-**||**-**||**-**||||
|**_Sub total_**|**-**||**-**||**-**||**-**||||
||||||||||||
|**_Total payments_**|10,000||**-**||**-**||10,000||**-**||
||||||||||||
|**_Net of_**
**_receipts/(payments)_**|94,922||||**-**||94,922||||
|**A5 Transfers**
**between funds**|**-**||**-**||**-**||**-**||**-**||
|**A6 Cash funds last**
**year end**|**-**||**-**||**-**||**-**||**-**||
|**_Cash funds this_**
**_year end_**|94,922||**-**||**-**||94,922||||
||||||||||||
||||||||||||
|**Section B**
**Statement of**
**assets and**
**liabilities at the**
**end of the**
**period**|||||||||||
|**Categories**|**Details**||||**Unrestrict**
**ed funds**||**Restricte**
**d funds**||**Endowm**
**ent funds**||
||||||**to nearest £**||**to nearest £**||**to nearest**
**£**||
|**B1 Cash funds**|||||**-**||**-**||**-**||
||||||**-**||**-**||**-**||
||||||**-**||**-**||**-**||
||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
|**A4 Asset and**
**investment**
**purchases, (see**
**table)**|||||||||||
||**-**||**-**||**-**||**-**||||
||**-**||**-**||**-**||**-**||||
|**_Sub total_**|**-**||**-**||**-**||**-**||||
||||||||||||
|**_Total payments_**|10,000||**-**||**-**||10,000||**-**||
||||||||||||
|**_Net of_**
**_receipts/(payments)_**|94,922||||**-**||94,922||||
|**A5 Transfers**
**between funds**|**-**||**-**||**-**||**-**||**-**||
|**A6 Cash funds last**
**year end**|**-**||**-**||**-**||**-**||**-**||
|**_Cash funds this_**
**_year end_**|94,922||**-**||**-**||94,922||||
||||||||||||
||||||||||||
|**Section B**
**Statement of**
**assets and**
**liabilities at the**
**end of the**
**period**|||||||||||
|**Categories**|**Details**||||**Unrestrict**
**ed funds**||**Restricte**
**d funds**||**Endowm**
**ent funds**||
||||||**to nearest £**||**to nearest £**||**to nearest**
**£**||
|**B1 Cash funds**|||||**-**||**-**||**-**||
||||||**-**||**-**||**-**||
||||||**-**||**-**||**-**||
||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
|**A4 Asset and**
**investment**
**purchases, (see**
**table)**|||||||||||
||**-**||**-**||**-**||**-**||||
||**-**||**-**||**-**||**-**||||
|**_Sub total_**|**-**||**-**||**-**||**-**||||
||||||||||||
|**_Total payments_**|10,000||**-**||**-**||10,000||**-**||
||||||||||||
|**_Net of_**
**_receipts/(payments)_**|94,922||||**-**||94,922||||
|**A5 Transfers**
**between funds**|**-**||**-**||**-**||**-**||**-**||
|**A6 Cash funds last**
**year end**|**-**||**-**||**-**||**-**||**-**||
|**_Cash funds this_**
**_year end_**|94,922||**-**||**-**||94,922||||
||||||||||||
||||||||||||
|**Section B**
**Statement of**
**assets and**
**liabilities at the**
**end of the**
**period**|||||||||||
|**Categories**|**Details**||||**Unrestrict**
**ed funds**||**Restricte**
**d funds**||**Endowm**
**ent funds**||
||||||**to nearest £**||**to nearest £**||**to nearest**
**£**||
|**B1 Cash funds**|||||**-**||**-**||**-**||
||||||**-**||**-**||**-**||
||||||**-**||**-**||**-**||
||**_Total cash funds_**||**-**|**-**|**-**||
|---|---|---|---|---|---|---|
||(agree balances with receipts
and payments account(s))||Agreement
Error|OK|OK||
||||**Unrestrict**
**ed funds**|**Restricte**
**d funds**|**Endowm**
**ent funds**||
||**Details**||**to nearest £**|**to nearest £**|**to nearest**
**£**||
|**B2 Other monetary**
**assets**|||**-**|**-**|**-**||
||||**-**|**-**|**-**||
||||**-**|**-**|**-**||
||||**-**|**-**|**-**||
||||**-**|**-**|**-**||
||||**-**|**-**|**-**||
||||||||
||**Details**||**Fund to**
**which asset**
**belongs**|**Cost**
**(optional)**|**Current**
**value**
**(optional)**||
|**B3 Investment**
**assets**||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
||||||||
||**Details**||**Fund to**
**which asset**
**belongs**|**Cost**
**(optional)**|**Current**
**value**
**(optional)**||
|**B4 Assets retained**
**for the charity’s**
**own use**||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||**-**|**-**||
|||||||||
|---|---|---|---|---|---|---|---|
||**Details**|||**Fund to**
**which**
**liability**
**relates**|**Amount due**
**(optional)**|**When due**
**(optional)**||
|**B5 Liabilities**|Unravel Biosciences|||research
study|**25,141**|**01 July**
**2025**||
||||||**-**|||
||||||**-**|||
||||||**-**|||
||||||**-**|||
|||||||||
|Signed by one or two
trustees on behalf of all
the trustees|Signature|||Print Name||Date of
approval||
|||||J Clatworthy||19/12/2025||
|||||A Clatworthy||19/12/2025||
|||||||||
|||||||||
## **Independent examiner's report on the accounts**
## **Section A Independent Examiner’s Report**
**Report to the trustees** Charity Name CRELD1 Warriors 5[th] April 2025 **Charity 1209106 On accounts for the year no (if ended any) Set out on pages** 1&2 (remember to include the page numbers of additional sheets)
I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended **05/04/2025** .
**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 examiner's statement**
I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:
- the accounting records were not kept in accordance with section 130 of the Charities Act; or
- the accounts did not accord with the accounting records; or
- the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination.
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 a proper understanding of the accounts to be reached.
- _Please delete the words in the brackets if they do not_
- _apply._
|**Signed:**
**Name:**
**Relevant professional**
**qualification(s) or body (if**
**any):**
**Address:**||23/01/2026|
|---|---|---|
||||
||Gemma Taylor||
||||
||AAT level 2&3||
||||
||43A Guildford Road West||
||Farnborough||
||GU14 6PS||
## **Section B Disclosure**
Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).
**Give here brief details of any items that the examiner wishes to disclose** .