## **Trustees’ Annual Report for the period** **Period start date From 01.01.2023** **Period end date To 31.12.2023** ## **Charity name: Sturge Weber UK** ## **Charity registration number: 202++99** ## **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
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|After the success and momentum of 2022, I am
pleased to say that this continued into 2023. Auditing
the Charity continues as does the review of our
policies annually. The purpose of this is to keep the
Trustees working towards the aims of the members
and the charity goals. Further training has been
undertaken by the Trustees to keep them compliant
and upskill them.
In January the Trustees had a face-to-face meeting at
the Hilton Coventry to arrange the family weekend
and undertake in training with our mentor Nicola
Colenso. The result of this training was that we were
able to reflect on the SWOT analysis we undertook 2
years earlier and establish which tasks we had
completed, and which tasks remained uncompleted.
The result of this was that highlighted the need for
new Trustee roles within the charity and gave us an
opportunity to write the job descriptions for the roles
we had established need filling. On return from the| training the roles of Digital/IT Trustee and Engagement Trustee were advertised. Active in April was another success this year. The annual event is a chance for our members and supporters to not only raise money for our charity but also raise awareness of Sturge Weber syndrome in your local community. The amount raised was £1767. After advertising the new Trustee roles we were pleased to conduct interviews for the roles and successfully appoint two new trustees. We were pleased to see more families choosing to join us for the Family Weekend and even happier to see that this was enjoyed by all that were in attendance. The weekend again took a more laidback approach. The weekend began on the Friday evening where members were invited to eat in the restaurant with their family and settle into the hotel before the start of the formal side of the weekend on the Saturday. On Saturday, the weekend started with a meet the Trustees and an interactive session of what the Trustees and charity have been doing in the last 3 years and collaboration with the members as to what you want the charity aims and mission to be. On Sunday the AGM was held and Claire was voted in as engagement Trustee and Steve as Digital/IT Trustee. The AGM was sent to all members via email 2 weeks before to allow members to read the documentation and raise questions prior to the AGM. A presentation was then given via Zoom by Rion Walsh discussing difficult behaviours and management of ASD and ADHD. After lunch on Sunday was free time where some families chose to go on a whole family trip to Coombes Abbey Park and others chose to stay in the hotel and make user of the Activity club, hotel facilities and just have time to socialise with others. The raffle was fantastic and ran over the course of Saturday and Sunday due to the generosity of members and supporters. The feedback from the Family Weekend was that our members would like the Charity to hold this annually. As a result of this feedback the next Family Weekend will be held at The Doubletree Hilton in Coventry on Friday 24th May to Monday 27[th] May 2024. As a result of the interactive session at the Family Weekend we have successfully launched the Charity new tag line of Strength Awareness Support. The charity mission statement has also been updated to: 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 and professional awareness. Fundraising in 2023 was increased which is incredible to see. Whilst payments out were increased because of the Family Weekend the receipts in the bank were £43,103 which after the payments out meant that the deficit to the Charity funds was only £8,801. I hope that the increased fundraising continues as this allows the Family Weekend to run annually and allows grant applications to be given to members. As a result of a few beers and a few dads bonding over the family weekend the Dad’s Walking Challenge was agreed. 4 dads agreed to take part in October in a challenge to take on the Welsh 3000’s. As we are sure you appreciate this was not for the faint hearted. Many hours were put into this challenge in preparation, planning and engagement to get much needed kit in support to the challenge. It was certainly not a challenge you could turn up on the weekend and have a go. The challenge alone raised £12490. Thank you all our supporters in 2023 and for the many events run on our behalf and money donated in memory of and other donations. The whole team had the pleasure of joining the team at Great Ormond Street Hospital for an Away Day. The Away Day was a fantastic opportunity for us to work with the team at GOSH to discuss our feedback of them and their proposals, support them in areas we feel that the members have discussed that need improving and an opportunity them to feedback to us how they feel we can support our members better. As a result of this away day the Trustees are working with the Swanns team on various projects to help with transition to nursery, school, college and further support and signpost families. The Make a Difference Grant scheme was again successful in 2023. We are pleased to attach a report of the grants that have been granted in since the start of the grant scheme. As you can see from the attached list, we were able to release 10 grants to members in 2023. I hope that by attaching the grants that have been released under the Make a Difference Grant Scheme it will show you the things we have been able to release money to members for. The Make a Difference Grant scheme closed as the end of December as this is being relaunched in 2024. We have welcomed a new volunteer to our Friends of Sturge Weber UK team. Kerrie Hiscock joined with a view to working alongside the Trustees for 6 months and then deciding whether a Trustee role is something she would like to take up. The Cuppa and Catch Ups have continued and are an opportunity for us to catch up over Zoom and chat. They have been well received by members. Monthly updates are now quarterly updates and continue to be well received by members. The charity has moved forward considerably again in 2023 and I would like to thank the trustees and volunteers for their support, time, and dedication. I would also like to thank the fundraisers and members for their continued support. The main priority for 2024 is again to work on member engagement and growing the Trustee team to strengthen the Charity. Thank you for your support. **Additional information (optional)** You may choose to include further statements where relevant about: |||| |---|---|---| |Achievements against
objectives set|Para 1.41|Make a difference grants have supported
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.| |Performance of fundraising
activities against objectives
set|Para 1.41|Funds raised are used for the Family
Weekend and Grants for members| |Investment performance
against objectives|Para 1.41|| Other ## **Financial Review** |Review of the charity’s
financial position at the end
of the period|Para 1.21|In 2023 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
2023, with the bank balance at £88,457.
Receipts in 2023 were £42,408. Payments
from the account were £51,209. Our
commitment to arranging an annual Family
Weekend is our largest expense as is our Make
a Difference Grant Scheme which we believe
are valuable contribution to the charity’s aims.
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.| |---|---|---| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The charity aims to hold funds in reserve for
the reason detailed below:-
•
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 offprojects and support| |Amount of reserves held|Para 1.22|£55,000| |Reasons for holding zero
reserves|Para 1.22|| |Details of fund materially in
deficit|Para 1.24|| |Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|Lack of fundraising
Unsuccessful grant applications| ## **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|Fundraising by members,
Active in April Campaign
Grants| |---|---|---| |||| |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** |Description of charity’s
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.| |---|---|---| |The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|There are 4 trustees and 4 volunteers in 2023.| |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** |Charity name|Sturge Weber UK| |---|---| |Other name the charity uses|SW UK| |Registered charity number|1016688| |Charity’s principal address|Milk Hall
Withens Lane
Barkisland
HX4 0DY| ||| ## **Names of the charity trustees who manage the charity** |1
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20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee (if any)**| |---|---|---|---|---| ||Marie Cavalier|Chair||Trustee committee/charity
members| ||Carolyn Burns|Acting Treasurer||Trustee committee/charity
members| ||Claire Trevor|Acting Secretary||Trustee committee/charity
members| ||Steve Waters|Digital and IT||Trustee committee/charity
members| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| ## – 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 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 charity’s objects Details of arrangements for N/A 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 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** **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**|Marie Cavalier|| |---|---|---| ||Marie Cavalier|| ||
Chair|| ||19thApril 2024|| ||19thApril 2024|| CHARITY COMMISSIO IO* I￿lANts ANO WAII Recelpts and paymonts accounts CC16a T• 01•2J furn A1 R•e•l 371 21.410 .410 Subkn 43.103 4J.103 302•4 A3Pa 174 171 24213 Fa 11) ln 173 EILllLI JJ Tr•wYr• Jo• 51Ja• A4 As5el inswlmorrt urtha5•5. Sub tot 51209 51.241 JB.357 1.106 A6 Cash Ivnds last yèar •nd 81.5$3 15.r 15.000 96. 1•.457 CCXKRI T¥rtJlT4 B1 C•*h fvnd• Toe•l e*sh furnts nA57 15010 r* --#### Dei*ls 84 Ass•ts relw"n•O forth• ¢harW$ own us• B5 Li•bi14tl•s Iq LL 1￿1r￿)24 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the trustees STLi£SE kJE6E£ ¢AI On accounts for the year ended 31 DECEM£E£ 2023 Charity no (if any) 101££88 Set out on pages I report to the trustees on my examination of the accounts of the above charity ("the Trust") for the year ended 31 1 2 2023. Responsibllities and basls of report As the charity's trustees, you are responslble for the preparation of the accounts in accordanc8 Wlth the requirements of the Charities Act 2011 ("the Act.). I report in respecl 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 examiner's statement Delete [ ] if not applicable. I have completed my examination. I confinn that no material matters have come to my attention in connection with the examination (other than that disclosed below ') which gives me cause to believe that in, any material respect: the accounting records were not kept in accordan￿ 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 conceming 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 Irue 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: Date: I JLLLV 202LI Name: JONIATrIAN sfE AO Relevant professional qualification(s) or body FCCA . IER Oct 2018 (if any): SLEIGH 3 sro£%/ Lro Address: T￿O￿N￿ ELL 8£15 g MILL, THO£hJ141LL 6ECE LANIE. 8ei4140LISE, k4EST YOLES141£E, H06 L4Ak4 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). Glve here brlef details of any items that the examiner wlshes to discloso. IER Oct 2018