**Period start date Period end date From 01.01.2024 To 31.12.2024** **Charity name: Sturge Weber UK** ## **Charity registration number: 1016688** ## **Objectives and Activities** |**Objectives and Activities**|**Objectives and Activities**|**Objectives and Activities**| |---|---|---| |SORP reference||| |Summary of the purposes of
the charity as set out in its
governing document
Para 1.17
Sturge Weber UK inspires to promote research and
share knowledge to empower individuals diagnosed
with Sturge Weber Syndrome and their families and
carers. Giving strength to create a supportive,
inclusive and caring community whilst raising both
public andprofessional awareness||| |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
- To provide strength and support for individuals
diagnosed with Sturge Weber Syndrome and their
families and carers.
- To promote awareness of the syndrome and to raise
both public and professional awareness of the
condition.
- To promote medical research into the causes and
treatment of this syndrome.
- To offer to connect individuals diagnosed with
Sturge Weber Syndrome and their families to create a
supportive community via social media and face to
face events and offer a Family Weekend annually for
families across the UK and Ireland.
- To provide a quarterly newsletter for members
- To work with health professionals to have a greater
understanding and create a collaborative approach in
the level of care from providing a diagnosis to
treatment plan and wellbeing for a person with Sturge
Weber Syndrome throughout their life.
- To empower our families by keeping up to date with
changes in legislation, services and signposting to
relevant external agencies for a co-productive
approach to supporting them in meeting their best
outcomes
Overall, Sturge Weber UK plays a crucial role in
supporting individuals and families affected by Sturge
Weber syndrome in the UK, as well as raising
awareness and promoting research to improve the
quality of life for those living with this rare condition.||| |Statement confirming
whether the trustees have|Para 1.18|A comprehensive list of statutory and non-statutory
policies are inplace. Please see our website for| ||had regard to the guidance
issued by the Charity
Commission on public
benefit||statutory policies, other policies are available on
request| |---|---|---|---| **Additional information (optional)** You may choose to include further statements where relevant about: ||SORP reference|| |---|---|---| |Policy on grant making|Para 1.38|A comprehensive list of statutory and non-statutory
policies are in place. Please see our website for
statutory policies, other policies are available on
request| |Policy on social investment
including program related
investment|Para 1.38|Not applicable| |Contribution made by
volunteers|Para 1.38|A comprehensive list of statutory and non-statutory
policies are in place. Please see our website for
statutory policies, other policies are available on
request| |Other||| ## **Achievements and Performance** ||SORP reference|| |---|---|---| |Summary of the main
achievements of the charity,
identifying the difference the
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|This year has been a remarkable one for Sturge
Weber UK, marked by progress, impactful events, and
strong community engagement.
In January 2024, the trustees participated in an
invaluable face-to-face training session, supported by
Nicola Colenso. During this session, we revisited
essential questions: who are we as a charity, what do
we do, and who do we support. This work served to
refocus and reenergise the Trustees, ensuring clarity
in our mission and purpose.
Our ongoing auditing process continued,
demonstrating our commitment to transparency and
accountability.
Active in April proved to be a tremendous success,
raising an impressive £3,401.67, thanks to the
collective effort and enthusiasm of our members and
supporters.
The Family Weekend was another highlight of the
year, bringing together members of our community
for a memorable event. We were privileged to host
enlightening talks by SIBs and Contact, and the
inclusion of members with a diagnosis of Sturge| **----- Start of picture text -----**
||| |---|---| |Weber Syndrome made the event even more| |meaningful. A meeting held prior to the AGM allowed| |us to discuss the AGM pack with members, ensuring| |open communication and participation.| |During the AGM, we were pleased to welcome Mike| |Grimes as Secretary, marking a positive step for our| |Fundraising in 2024 reached remarkable heights, and| |we are deeply grateful to our dedicated supporters.| |During 2024, the funds received from the shop,| |various fundraising activities, family weekend sales,| |raffles, and bank interest amounted to £43,529.60.| |Expenses for the year, including overheads, family| |weekend costs, shop stock, and meetings, totalled| |£43,154.07, resulting in a profit of £375.53. This| |means that no reserves were required to run the| |charity in 2024|a testament to the incredible| |dedication and hard work of our fundraisers.| |We would like to extend heartfelt thanks to the| |following individuals and groups for their exceptional| |contributions: Marc Divers, Adam Leake, Becky| |Blount, Bella Parsons, Melissa Brandon, Emily| |Summerson, Peter Stele, East Riding Rangers U14s,| |Ashton Bears, Theo Stimpson, Jade McCormick,| |Natasha Reidie, Burns School of Black Belts, Linda| |Adams, Fred Sutton, all members that took part in| |Active in April, and donations made in memory of| |Betty McLeod.| |Additionally, we provided grants totalling £1,309.73| |to our members, furthering our commitment to| |supporting the Sturge Weber community.| |We are proud to announce several strategic| |advancements made this year. We have now| |developed a comprehensive fundraising strategy,| |launched the Stronger Together campaign,| |formulated a growth plan, and established a| |streamlined fundraising workflow. Additionally, we| |have applied for grants and successfully developed a| |members-only access section on our website,| |enhancing our online resources and engagement.| |Following the training earlier in the year, we have also| |identified key roles that need to be filled to| |strengthen our governance and operations further.| |These roles include Secretary, Fundraising Trustee,| |Engagement Trustee, Marketing Trustee, and| |Compliance Trustee.| |As we look back on 2024, it is clear that it was a year| |of growth, collaboration, and success. Thank you to| |everyone who played a role in making this possible.| |Together, we continue to make a difference.| **----- End of picture text -----**
**Additional information (optional)** You may choose to include further statements where relevant about: Para 1.41 **----- Start of picture text -----**
Achievements against Make a difference grants have supported
objectives set families and members with a diagnosis of
Sturge Weber Syndrome. Family Weekend
whilst being the biggest expense to the charity
gives invaluable support to members.
Funds raised are used for the Family
Performance of fundraising Weekend and Grants for members
activities against objectives Para 1.41
set
Investment performance Para 1.41
against objectives
Other
**----- End of picture text -----**
## **Financial Review** ||financial position at the end
of the period|Para 1.21|In 2024 we saw an increase in activity and
engagement with the charity once
again. Sturge Weber UK continued to show a
financially good position as of 31stDecember
2024, with the bank balance at £89,100.
Receipts in 2024 were £43,500. Payments
from the account were £43,154. Our
commitment to arranging an annual Family
Weekend is our largest expense as is our Make
a Difference Grant Scheme which we believe
The charity is run by volunteers, there are no
paid staff. Travel and subsistence costs for
trustee meetings are reimbursed. We are
extremely grateful to every fundraiser for their
efforts, large or small.
Detail
Receipts via fundraising events we received in
£26,622 and donations were £2,733 in
2024. We received £523 from the
government in gift aid.
The family weekend raised £11,092 from the
payments received from members
contributions towards the cost of the weekend
and the raffle and auction. We also received
in £811 in interest from the bank.| |---|---|---|---| **----- Start of picture text -----**
The online shop and shop at the Family
Weekend in 2023 raised £1,748 and helped to
spread awareness too.
Payments in 2024 amounted to £43,154. The
Family Weekend cost £33,886 to run. The next
largest outgoing in 2024 was £2,658 for
operational costs including postage, printing,
insurance and memberships.
Shop purchases were £948
Fees for accountancy and online platforms
were £2426
Spending on meetings was £1788. Finally, to
remain compliant we refreshed some of our
training and trained new trustees, spending
£352.
Sturge Weber UK is a small charity not subject
to statutory audit and the accounts are
compiled on a cash basis. For this reason, there
are no adjustments in the accounts for shop
stock, pre-payments and accruals.
Statement explaining the Para 1.22 The charity aims to hold funds in reserve for
policy for holding reserves the reason detailed below:-
stating why they are held Projects suggested by charity members
Aid research into Sturge Weber
Syndrome
Raising awareness of SWS amongst
professionals, families and public
For people with SWS who are in need
Ongoing support
One off projects and support
Amount of reserves held Para 1.22 At the year-end the charity held £88,457 of
cash reserves, of which £15,000 were restricted
and £73,457 unrestricted. It is our policy to
hold a minimum of £55,000 in unrestricted
reserves.
Reasons for holding zero Para 1.22
reserves
Details of fund materially in Para 1.24
deficit
Explanation of any Para 1.23 Lack of fundraising
uncertainties about the Unsuccessful grant applications
charity continuing as a going
concern
**----- End of picture text -----**
**Additional information (optional)** You may choose to include further statements where relevant about: |||||||Fundraising by members,| |---|---|---|---|---|---|---| |||||||Active in April Campaign| |sources of funds (including|||||Para 1.47|Grants| |any fundraising)||||||| |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|None engagement of members, unsuccessful
grant applications, lack of fundraising| |Other||| ## **Structure, Governance and Management** |trusts:||Board of Trustees| |---|---|---| |Type of governing document
(trust deed, royal charter)|Para 1.25|Constitution| |How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|Charity| |Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|Appointed by the Trustee Team and elected by
the charity members.| **Additional information (optional)** You may choose to include further statements where relevant about: All trustees and volunteers undergo induction and training as per our policies and procedures. Policies and procedures adopted for the induction Para 1.51 and training of trustees |
Policies and procedures
adopted for the induction
and training of trustees|
Para 1.51|
All trustees and volunteers undergo induction
and training as per our policies and procedures.| |---|---|---| |structure and any wider
network with which the
charity works|Para 1.51|There are 5 trustees and 4 volunteers in 2024.| |Relationship with any
related parties|Para 1.51|Sturge Weber UK has productive working
relationships with the SWaNs clinic at Great
Ormond Street and Dr Eriksson at UCLH.| |Other||The Trustees conduct comprehensive risk
assessments where needed.| ## **Reference and Administrative details** **----- Start of picture text -----**
Charity name Sturge Weber UK
Other name the charity uses SW UK
Registered charity number 1016688
Milk Hall
Withens Lane
Barkisland
HX4 0DY
**----- End of picture text -----**
## **Names of the charity trustees who manage the charity** **----- Start of picture text -----**
Dates acted if not for whole Name of person (or body) entitled
Trustee name Office (if any)
year to appoint trustee (if any)
Marie Cavalier Chair Trustee committee/charity
1
members
Carolyn Burns Treasurer Trustee committee/charity
2
members
Claire Trevor Engagement Trustee committee/charity
3
members
Steve Waters Digital and IT Trustee committee/charity
4
members
Mike Grimes Secretary May 2024 Trustee committee/charity
5
members
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
**----- End of picture text -----**
## 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** **----- Start of picture text -----**
Description of the assets N/A
held in this capacity
Name and objects of the N/A
charity on whose behalf the
assets are held and how this
falls within the custodian
Details of arrangements for N/A
safe custody and
segregation of such assets
assets
**----- End of picture text -----**
## **Additional information (optional)** ## **Names and addresses of advisers (Optional information)** |**Type of**|**Name**|**Address**| |---|---|---| |**adviser**||| **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** ## **Declarations** **Signed** |**Signed**|| |---|---| |**Signature(s)**
**Full name(s)**
**Position (eg Secretary,**
**Chair, etc)**
**Date**|Marie Cavalier| ||Marie Cavalier| ||
Chair| ||27thMarch 2025| ||27thMarch 2025| CHARITY COMMISSIO FOR ENGLAND AND WALE Sturye Weber UK Receipts and payments accounts CC16a For the period 01-Jan-24 31-Dec-24 Unrestricted funds Restricted funds Endowment funds Totsl fvnds Last y￿r tothe nearest to the nea￿t£ to the nea￿t£ to the nea￿tE to the nearest£ A1 Receipts Bank Interest Gift Aid Donation5 Family Weekend Fundraising Shop $88 3,896 1,876 6,438 28,410 1,895 523 2,733 11.092 26,622 1.748 523 2,733 11,092 26,622 1,748 Sub total(Gross income for AR) 43,630 43,630 43,103 A2 Asset and investment sales, {see tsble}. Sub total zzzz Total receipts 43.530 43,530 43.103 A3Pa ents Accountancy Fees Awareness Communication Equipment Family Weekend F*s Gifts Grant Insurance Memberships Postage Printing & Stationery Projects Purch8ses Sundry Training Trustee Meetings 1.170 1,170 84 178 2,292 37,616 939 100 1.913 33,886 1.256 215 1,310 180 60 75 1.913 33,886 1.256 215 1,310 180 163 173 307 75 5,270 960 352 1.788 352 1,788 955 Sub total 43.153 43,153 51,209 A4 Asset and investment purchases, (see table) Sub total 43.1S3 43,153 51.209 Net of receipts/(payments) AS Transfers between funds A6 Cash funds last year end Cash funds this year end 377 377 8,106 73.457 73.834 15,000 15.000 88.457 88.834 8,106 Page11 Unrestricted funds to nearest t Restricted funds to nearest t Endowment funds to neare8t £ Categories Details Bl Cash funds Current Bank Acwunt 20,869 DeFosit Bank A¢￿￿nI $3,232 16,IXIO Credit card 267 Total cash funds 73,834 15,000 latyee re¢wts aThl paymerfs J￿rt{sI} Unrestricted funds Restricted funds Endowment funds Details to nearest £ to nearest £ to nearest £ Fund to which asset belon Current value ional Details C05t loptionall Fund to which Current value ional Details Cost (op￿Onall B4 Assets retsined for the charity's own use Fund to whlch relate5 ount due onal When due tional Details Credit eArd BS Liabilities 267 Signed by one or tk%o trustees on behalf of all the trustees Dale of Signature Print Name Marie Cavalier 20£J-04-P9 Carol n Burns 2025-04-09 Page 12 CHARITY COMMISSION FOR ENGLAND ANO WALES Independent examiner's report on the accounts Section A Independent Examinerfs Report Report to the trustees Sturge Weber UK On accounts for the year ended 31 December 2024 Charity no (if any) 1016688 Set out on pages 1 to12 I report to the trustees on my examination of the accounts of the above charity ('the Trust.) for the year ended 31 De￿rnber 2024. Responsibilities and basis of report As the charity's Iruslees. you are responsible for the preparation of the accounts in accordan￿ with the requirements of the Charities Act 2011 ('%he 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 I have completed my examination. I confimi that no material matters have examiner's statement come to my attention in connection with the examination which gives me cause lo 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. Signed: Date: 2025-04-09 Name: Jonathan Stead Relevant professional qualification(s) or body (if any): FCCA Address: Sleigh & Story Ltd Thomhill Brigg Mills, Thornhill Beck Lane, Brighouse. HD6 4AH. 13 Document electronically signed ww.fusesi n.com Document Details Document ID Document Bundle ID Uploaded to Fusesign Fusesign subscriber Initiator email Signed by 4b720000-3faO-5aad-a537-08dd7741ace2 ef6dOOOO-e6ef-Oa5c-Ib43-08dd77421b8f 2025-04-09 08:39 +00.00 Sleigh & Story jonny@sleighandstory.co.uk Marie Cavalier Imarie@sturgeweber.org.ukl, Carolyn Burns Icarolyn@sturgeweber.org.uk), Jonathan Stead (i'onny@sleighandstory.co.ukl 2025-04-09 09:30 +00.'00 htt .fuse.work fu5esi System finalisation Verify URL veri 4b720CKJO-3faO-5aad-a537-08dd7741ace2 Document Signers Signer I Name Marie Cavalier Email marie@sturgeweber.org.uk Mobile N/A IP Address/es 31.185.58.218 Signed on Pages 12 Verification Mode Unauthenticated Signer 2 ri ier Name Carolyn Burns Email carolyn@sturgeweber.org.uk Mobile N/A IP Address/es 81.159.47.5 Signed on Pages 12 Verification Mode Unauthenticated Signer 3 Name Jonathan Stead Email jonny@sleighandstory.co.uk Mobile N/A IP Address/es 176.35.15.135 Signed on Pages 13 Verification Mode Unauthenticated DOCUMENT AUDIT LOG DATE TIME 2025-04-09 08.'39 +00'.00 USER IONNY@SLEIGHANDSTORY.CO. 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CUSTOMER VERIFIED BY UNIQUE URL SENTVIA EMAIL INO 2FAI LINK OPENED FROM IP 31.185.58.218 DOCUMENTSIGNED= STURGE WEBER UK FINALACCOUNTS 311224- ON PAGE 12 ISIGNATUREID= EF6DOOOO-E6EF-OA5C-2518-08DD77421B881 FORM FIELDS SUBMirrED FOR DOCUMENT- STURGE WEBER UK FINAL ACCOUNTS 311224 DOCUMENTSIGNED= STURGE WEBER UK FINALACCOUNTS 311224 MARIE CAVALIER HAS COMPLETED BUNDLE EF6DOOOO-E6EF-OA5C-IB43- 08DD77421B8F LINK OPENED FROM IP 31.185.58.218 CUSTOMER VERIFIED BY UNIQUE URL SENT VIA EMAIL INO 2FAI LINK OPENED FROM IP 81.159.47.5 DOCUMENT SIGNED= STURGE WEBER UK FINALACCOUNTS 311224- ON PAGE 12 ISIGNATUREID= EF6DOOOO-E6EF-OA5C-2533-08DD77421B881 FORM FIELDS SUBMirrED FOR DOCUMENT.. 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STURGE WEBER UK FINAL ACCOUNTS 311224 2025-04-09 08:39 +00'.00 SYSTEM 2025-04-09 08-.39 +00'.00 SYSTEM 2025-04-09 08.'40 +00'.00 2025-04-09 08.'40 +00'.00 2025-04-09 08.'41 +00'.00 MARIE CAVALIER MARIE CAVALIER MARIE CAVALIER 2025-04-09 08-41 +00..00 MARIE CAVALIER 2025-04-09 08-41 +00..00 2025-04-09 08:41 +00'.00 MAFIIE CAVALIER MARIE CAVALIER 2025-04-09 08:53 +00'.00 2025-04-09 09.'24 +00'.00 2025-04-09 09.'24 +00'.00 2025-04-09 09.'26 +00'.00 MARIE CAVALIER CAROLYN BURNS CAROLYN BURNS CAROLYN BURNS 2025-04-09 09.'26 +00'.00 CAROLYN BURNS 2025-04-09 09-.26 +00..00 2025-04-09 09-26 +00..00 CAROLYN BURNS CAROLYN BURNS 2025-04-09 09..29 +00..00 IONATHAN STEAD 2025-04-09 09.'29 +00.'OO IONATHAN STEAD 2025-04-09 09:30 +00.'OO IONATHAN STEAD 2025-04-09 09-.30 +00'.00 IONATHAN STEAD 2025-04-09 09.'30 +00'.00 IONATHAN STEAD DOCUMENTSIGNED= STURGE WEBER UK FINALACCOUNTS 311224 2025-04-09 09.'30 +00'.00 IONATHAN STEAD IONATHAN STEAD HAS COMPLEtED BUNDLE EF6DOOOO-E6EF-OA5C-IB43- 08DD77421B8F FINALISING DOCUMENT14B720000-3FAO-5AAD-A537-08DD7741ACE21 2025-04-09 09-30 +00..00 SYSTEM More Information For more information on electronic signatures and to validate this document was signed by the parties listed above, please visit www.fuses1 n.com