## **Trustees' Annual Report for the period**
||Period start date|Period start date|||Period end date||
|---|---|---|---|---|---|---|
|**From**|01|01|2022|**To**|31
12|2022|
## Section A Reference and administration details
**Charity name Other names charity is known by** SW UK **Registered charity number (if any)** 1016688 **Charity's principal address** Milk Hall, Withens Lane,
Sturge Weber UK
Barkisland Halifax **Postcode HX4 0DY**
## **Names of the charity trustees who manage the charity**
|1
2
3
4
5
6
7
8|**Trustee name**|**Office (if any)**|**Dates acted if not for**
**whole year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**|
|---|---|---|---|---|
||Marie Cavalier|Chair||Trustee committee/ charity
members|
||Carolyn Burns|Secretary||Trustee committee/ charity
members|
||Antonia East|Treasurer||Trustee committee/ charity
members|
||||||
||||||
||||||
||||||
||||||
## **Names of the trustees for the charity, if any, (for example, any custodian trustees)**
**Name Dates acted if not for whole year**
## **Names and addresses of advisers (Optional information)**
**Type of adviser Name Address**
## **Name of chief executive or names of senior staff members (Optional information)**
**TAR**
March **2012**
1
**Section B Structure, governance and management**
## **Description of the charity’s trusts**
Type of governing document
- (eg. trust deed, constitution)
> [Constitution ]
How the charity is constituted
- (eg. trust, association, company)
Trustee selection methods
- (eg. appointed by, elected by)
> [Appointed by the trustee team and elected by charity members ]
## **Additional governance issues (Optional information)**
You **may choose** to include additional information, where relevant, about:
- policies and procedures adopted for the induction and training of trustees;
- the charity’s organisational structure and any wider network with which the charity works;
- relationship with any related parties;
- trustees’ consideration of major risks and the system and procedures to manage them.
- All trustees and volunteers undergo induction and training as per our policy and procedure.
There are three trustees and two volunteers in 2022.
- Sturge Weber UK has productive working relationships with the Sturge Weber Clinic at Great Ormond Street Hospital and with Dr Eriksson at UCLH.
The trustees conduct comprehensive risk assessments where needed.
## **Section C Objectives and activities**
**Summary of the objects of the charity set out in its governing document**
The Charity exists to promote the interests of people affected by Sturge Weber syndrome and to engage in any charitable activities which may assist their wellbeing and to protect and preserve the health of their families, friends and helpers, by providing information and support, promoting research into Sturge Weber syndrome and raising public and professional awareness of the syndrome.
**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)**
- Charitable purpose: to support the health and wellbeing of children/young people, adults, families and carers of people with Sturge Weber Syndrome through information, grants and signposting
- Provide a Family Weekend
- Support research
## **Additional details of objectives and activities (Optional information)**
**TAR**
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2
You **may choose** to include further statements, where relevant, about:
- policy on grantmaking;
- policy programme related investment;
We have a comprehensive list of statutory and non-statutory policies. Please see our website for statutory policies, other policies are available on request.
- contribution made by volunteers.
## Section D Achievements and performance
**Summary of the main achievements of the charity during the year**
The momentum of work by the Trustees carried forward into 2022. The audit of the Charity continues as does the review of our policies annually. The purpose of these are 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.
The first achievement of 2022 was to agree and launch the new logo. This resulted in the shop being restocked. The new shop was launched at the Family Weekend and the shop sales were £1990. Sales from the shop have increased during 2022. New stock is planned for 2023 so watch this space and visit www.sturgeweber.org.uk. The purchase of Square Reader allowed us to take card payments at the Family Weekend which meant the shop was available to all. The beginning half of the year was taken up with organising the first Family Weekend that we have been able to hold since 2019 due to the Covid 19 restrictions. The Family Weekend was enjoyed by all that were able to attend. It took a more laid-back approach which was welcomed. 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, we were joined by MIND who gave a talk on mental health and Sarah Hodkinson, Partner at Ramsden’s solicitor who gave a talk on Wills, Probate and Trusts.
On Sunday we watched a presentation from Catherine Swales at Great Ormond Street Hospital on Sturge Weber Syndrome and were joined by Professor Simon Baron-Cohen via Zoom where he presented on Autism. Sunday afternoon was a whole family trip to Coombes Abbey Park, which was fantastic. Members who did not attend Coombes Abbey Park had the opportunity to use the hotel facilities and socialise.
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 5[th] May to Monday 8[th] May 2023.
Fundraising in 2022 was increased which is incredible to see. Whilst payments out were increased because of the Family Weekend the receipts in the bank were £31,635 which after the payments out meant that the deficit to the Charity funds was only £6702. I hope that the
**TAR**
March **2012**
3
Section D Achievements and erformance p
increased fundraising continues as this allows the Family Weekend to run annually and allows grant applications to be given to members.
Active in April was again an enormous success and raised £4279. The community spirit this event brings is as important as the funds raised. It is the highlight of April for me to see our members and supporters' pictures shared of their miles and experiences raising money for our Charity.
Carolyn and I had the pleasure of joining the team at Great Ormond Street Hospital for an Away Day which was attended also by Antonia via Zoom. 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 Cuppa and Catch up for under 5s was started. During the day lots of discussions were had around transition and how they can support families in this process.
The Make a Difference Grant scheme continued in 2022. We were able to release 13 grants to members in 2022. 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. This is not limited to the items on the list, if there is something whether it be counselling for a parent, sibling or child/adult with Sturge Weber Syndrome or a piece of equipment every grant is discussed and considered according to the policy.
The AGM was arranged for July, but it had to be cancelled as a quorum was not achieved. The AGM will now be held at the Family Weekend in May. Members who are not in attendance can apply for a code to join via Zoom.
Two new features of 2022 have been the Cuppa and Catch Ups (for all and under 5s) and the Friends of Sturge Weber UK which have been set up.
The Cuppa and Catch Ups are an opportunity for us to catch up over Zoom and chat. They have been well received by members. The longest Cuppa and Catch Up was 3 hours and 40 minutes.
Many members helped at the Family Weekend in May and the idea of Friends of Sturge Weber UK was born. We already had 2 volunteers in Steve Waters, who runs the website and Nicola Colenso, who mentors me as Chair and delivers training and support for the Trustees. Three new volunteers have joined Friends of Sturge Weber UK, two of whom have Sturge Weber Syndrome. This is an exciting new venture for the Trustees and new volunteers are welcomed to join Friends of Sturge Weber UK.
The trustees elected to use a charity credit card to reduce administration and expense claims. The credit card will be used to make charity purchases, including items for successful grant applications. Using the card gives the charity legal protection on purchases and a clear audit trail.
**TAR**
March **2012**
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Section D Achievements and erformance p
Whilst fundraising and the shop are a good revenue source for the charity, we have during 2022 looked at external grant applications. We applied for a Pears Grant towards the Family Weekend. Despite being unsuccessful this time, we intend to apply for more external grant applications in 2023 with support from Nicola Colenso who has a wealth of knowledge on this.
Towards the end of 2022, we decided that the monthly updates would become bi-monthly updates. This allows me time during the two months to research useful information to share with members and whilst longer updates hopefully are well received by members.
The charity has moved forward considerably again in 2022 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 2023 is to work on member engagement and growing the Trustee team to strengthen the Charity.
## **Section E Financial review**
|**Brief statement of the**
**charity’s policy on reserves**
**Details of any funds materially**
**in deficit**
**Further financial review details**|The Charity aims to hold funds in reserve for the reasons detailed
below.
Funding for other matters, e.g.:
•
for projects suggested by Sturge Weber UK charity members,
•
to aid research into Sturge Weber Syndrome,
•
to raise awareness of SWS amongst professionals, families and the
public,
•
for people with SWS who are in need,
•
ongoing support,
•
one-off projects and support, will be covered by fundraising drives
andgrant applications.|
|---|---|
|||
||**(Optional information)**|
|You**may choose**to include
additional information, where
relevant about:
•
the charity’s principal
sources of funds (including
any fundraising);
•
how expenditure has
supported the key objectives
of the charity;
•
investment policy and
objectives including any
ethical investment policy
adopted.|In 2022 we saw an increase in activity and engagement with the charity
once the Covid-19 restrictions lifted. Sturge Weber UK continued to show
a financially good position as of 31stDecember 2022, with the bank
balance at £96,563.
Receipts in 2022 were £30,294 – 43% from campaigns and events, 23%
from donations, 20% raised at the Family Weekend, 7% gift aid and 7%
from the sale of shop items.
Payments from the account were £38,357 – 66% for the Family
Weekend, 16% for projects, 10% for purchasing shop items and the
remainder for operational costs.
Our largest expense and most valuable contribution to the charity’s aims,
is the Family Weekend. Due to popular request, we plan to hold the event
annually.|
|---|---|
**TAR**
March **2012**
5
The charity is run by volunteers, there are no paid staff. Travel and subsistence costs for trustee meetings are reimbursed. We have no investments.
## **Section F Other optional information**
## **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(s)** Antonia East **Position (eg Secretary, Chair, etc)**[Treasurer ] **Date** 07/09/2023
**TAR**
March **2012**
6
**Charity Name No (if any) Sturge Weber UK 1016688 Receipts and payments accounts CC16a For the period** Period start date Period end date **To from** 01-Jan-22 31-Dec-22
## **Section A Receipts and payments**
**----- Start of picture text -----**
Unrestricted Restricted Endowment
Total funds Last year
funds funds funds
to the nearest
to the nearest £ to the nearest £ to the nearest £ to the nearest £
£
A1 Receipts
Bank Interest 277 - - 277 8
Gift Aid 2,049 - - 2,049 1,355
Donations 7,011 - - 7,011 6,066
Family Weekend 5,680 - - 5,680 -
Fundraising 13,223 - - 13,223 5,766
Shop 2,054 - - 2,054 186
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
30,294 - - 30,294 13,381
AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - - -
Sub total - - - - -
Total receipts 30,294 - - 30,294 13,381
A3 Payments
Accountancy Fees 696 - - 696 696
Awareness 541 - - 541 1,005
Communications 201 - - 201 183
Equipment 179 - - 179 -
Family Weekend 24,203 - - 24,203 -
Fees 890 - - 890 641
Gifts 38 - - 38 -
Insurance 217 - - 217 432
Memberships 85 - - 85 173
Postage 539 - - 539 993
Printing & Stationery 485 - - 485 2,248
Projects 5,825 - - 5,825 1,725
Purchases 3,924 - - 3,924 -
Sundry - - - - 96
Telephone - - - - 66
Training 236 - - 236 1,041
Trustee Meetings 298 - - 298 1,362
- - - - -
Sub total [ 38,357 ] - - 38,357 10,658
A4 Asset and investment
purchases, (see table)
- - -
- - - -
Sub total [ - ] - - - -
Total payments 38,357 - - 38,357 10,658
Net of receipts/(payments) - 8,063 - - - 8,063 2,723
A5 Transfers between funds - - - - -
A6 Cash funds last year end 89,626 15,000 - 104,626 -
Cash funds this year end 81,563 15,000 - 96,563 2,723
**----- End of picture text -----**
CCXX R1 accounts (SS)
24/04/2023
1
|**Categories**
Signed by one or two trustees on
behalf of all the trustees
**B1 Cash funds**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B5 Liabilities**
**B3 Investment assets**|Signature
**Details**
**Details**
Current Bank Account
Deposit Bank Account
**Details**
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**29,723**
**-**
**51,841**
**15,000**
**-**
**-**
**81,563**
**15,000**
OK
OK
**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**
**-**
**-**
**-**
**-**
**-**
Print Name
Antonia East|**Endowment**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
OK
**Endowment**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**Current value**
**(optional)**
**-**
**-**
**-**
**-**
**-**
**Current value**
**(optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**When due**
**(optional)**
Date of
approval
07/05/2023|
|---|---|---|---|
CCXX R2 accounts (SS)
24/04/2023
2
CHARITY COMMISSION
FOR ENGLAND AND WALES
Independent exaffliner's report on the
accounts
Sedion A
Independent Examlner's Report
Report to the trustees
STL42fiE k4E&ER LAK
On accounts for the year
endod
Charity no
{If arny>
31 0£C£H8££ 2022
1016688
Sel out on page$
3-10
I report lo the trustees on my examination of the accounts of the above
charfty I'lhe Trust I for the year ended31 12 2022
Responsibilit188 and
bas1• of report
As the charitls trustees, you are responsible for the pr8paration of the
accounts in accordance wilh the requirements of the Charitie5 Act 2011
("Ihe Act").
I report in respect of my examin81ion of the Tru8t'5 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 ltte Charity Commission
under section 14515)(bl of the Act.
Independent
oxamlnerfs statement
ifieth•mboF-oED'r4serLnam&of
I have completed my examination. I confirm that no material matters have
come lo my attention in connection with the examinatlon lolher than that
disclosed bolow ') which gives me cause to believe that in, any material
respect..
the accounting records were not kept in accordance with section 130
of the Chariti8s Act. or
the accounts did not accord with the accounting records., or
the accounts did not comply with the applicable requirements
concerning the fom and content of accounts sel out in the CharftSes
(Accounts and Reports} Regulations 2008 other than any requlremenl
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 lo enable a proper understanding of the accounts to be reached.
Ploasg delete the words in the brackets rflhey do not apply.
Signod..
Dato..
151081202£
Name:
IFAf iQ8AL JHUfj£OO
Relevant professional
qualfflcatlon(s) or body
FCCA
IER
Oct 2018
lif any)..
SLElfjH 4 sro£y Lro
TrIO£NHILL ££lfifj MILL, rHo£hJHILL 8ECk
LANI
IG4OUSE EsT YO£ksk4i£c
H06 L4hH.
Address:
Section B
Disclosure
Only complete if the examiner needs lo highlight material matters of concern
(see CC32, Independent examinatron of charity accounts: directions and
guidance for examiners).
Glvo horo brlef dotalls of
any items that tha
examlner wlshos to
dllclose.
IER
Oct 2018