## **Trustees’ Annual Report for the period**
**From 6 April 2022 to 5 April 2023**
**Charity name: UK Infantile Spasms Trust**
## **Charity registration number: 1172167**
## **Objectives and Activities**
||SORP reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|**The purpose of the charity is to provide**
**a relief of the needs of those suffering**
**from Infantile Spasms or West**
**Syndrome, as well as promote**
**awareness and support clinical research**
**into infantile spasms.**|
|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|**As follows but not exclusively:**
**a) The provision of information,**
**advice and other assistance and**
**support to children, parents,**
**families and carers of those**
**affected by Infantile Spasms**
**b) The promotion of research into**
**the causes and treatment of**
**Infantile Spasms and the**
**publication of useful results of**
**this research**
**c) Raising the awareness of the**
**public and of the medical**
**professions on any matter**
**relating to the charity objectives**|
|Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|**n/a**|
## **Additional information (optional)**
## You may choose to include further statements where relevant about:
SORP reference **n/a** Para 1.38 Policy on grant making **n/a** Para 1.38 Policy on social investment including program related
investment 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|**The charity provides support to around**
**1300 families with children affected by**
**Infantile Spasms. This includes sharing**
**information, education, support and**
**grants.**
**It also improves the awareness of the**
**symptoms of Infantile Spasms across**
**the general public as well as within**
**medical professions.**
**The charity also supports the**
**advancement of clinical research into**
**the condition to help children suffering**
**now and in the future.**|
## **Additional information (optional)**
## You may choose to include further statements where relevant about:
|
Achievements against
objectives set|
Para 1.41|
**Achieving**|
|---|---|---|
|Performance of fundraising
activities against objectives
set|Para 1.41|**Achieving**|
|Investment performance
against objectives|Para 1.41|**Profit is made annually therefore**
**achieved**|
|Other|||
## **Financial Review**
|Review of the charity’s
financial position at the end
of the period|Para 1.21|**The charity was once again profit**
**making, however donations received**
**decreased due to less events and a**
**general decline. The profit was £7,795 in**
**22/23**|
|---|---|---|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|**A significant percentage of the reserves**
**currently held in the bank account have**
**been ring-fenced for the imminent**
**investment in a UKIST-owned primary**
**healthcare education package which will**
**roll out UK wide throughout 2024 and**
**beyond (final payment expected to be**
**made in Q4 2023).**|
|Amount of reserves held|Para 1.22|**£104,194**|
|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|**None**|
## **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|
**The charity’s principal source of funds**
**is from donations and fundraising**
**events.**|
|---|---|---|
|Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|**None**|
|A description of the principal
risks facing the charity|Para 1.46|**That not enough donations are made to**
**keep the charity afloat. This doesn’t**
**seem to have been an issue in the**
**accounting year and even through**
**COVID previously.**|
|Other|||
## **Structure, Governance and Management**
|Description of charity’s
trusts:|||
|---|---|---|
|Type of governing document|Para 1.25|**Charitable Incorporated Organisation**
**(CIO)**|
|How is the charity
constituted?|Para 1.25|**Trust/CIO**|
|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 trustees normally at AGM**|
## **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|
**n/a**|
|---|---|---|
|The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|**n/a**|
|Relationship with any related
parties|Para 1.51|**n/a**|
|Other||**n/a**|
## **Reference and Administrative details**
|Charity name|UK Infantile Spasms Trust|
|---|---|
|Other name the charity uses|n/a|
|Registered charity number|1172167|
|Charity’s principal address|28 Overnhill Road
Downend
Bristol
BS16 5DN|
## **Names of the charity trustees who manage the charity**
|1
2
3
4
5
6
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8
9
10
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12
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17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee (ifany)**|
|---|---|---|---|---|
||Michelle Schofield||||
||JennyRawling||||
||Belen Robbins||Resigned 8 June 22||
||Louisa Coyle||||
||Alice Goldhill||||
||Samia Sanders||||
||AmyDowding||||
||Louise Derbyshire||Appointed 26 March 23||
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## **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**|**Name**
**Address**|
|---|---|---|
|**Accountants**|Norton
Accountanc
y Ltd|7 Soundwell Road, Staple Hill, Bristol BS16 4QG|
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## **Name of chief executive or names of senior staff members (Optional information)**
Not applicable
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
**Not applicable**
## **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)** Sarah Jenkins
**Position (eg Secretary,** Advisor **Chair, etc)**
**Date**
13 October 2023
## **Unaudited profit and loss report**
## **for**
**UK Infantile Spasms Trust Year ended 5 April 2023**
Prepared: 7th June 2023 Finalised: 21st June 2023 By Norton Accountancy Ltd
## **ACCOUNTS FOR UKIST**
## **FOR THE PERIOD ENDED 5 APRIL 2023**
## **ACCOUNTANTS CERTIFICATE**
We have prepared the attached accounts, without audit from the records and information supplied to us, and we confirm that they are in accordance therewith.
|Jane Norton FMAAT|Date|
|---|---|
|Norton Accountancy||
|Licence no. 0521||
|**CLIENT'S SIGNATURE**||
|I have read the accounts prepared by Norton Accountancy and approve the figures||
|J Rawling||
|Signed|Date|
|M Scoffield||
|Signed|Date|
**UKIST**
**Profit & loss statement Year ended 5 April 2023**
|_Income_
Donations received
Grants
_Expenditure_
Accountancy
Grants
Family support
Insurance
training and research
Subs
Promotional items
Printing, postage & stationary
Admin
Sponsorship
Sundry
Social media & Website
**Profit for the year**|**£**
**£**
**_£_**
**_£_**
23,820
_45,795_
23,820
_45,795_
300
_300_
8,165
_10,673_
1,213
_2,217_
439
_439_
270
_37_
216
_90_
725
_584_
103
_672_
2,827
_939_
1,597
_762_
269
_24_
200
_92_
16,025
_16,830_
**7,795**
**_28,965_**
**2023**
**_2022_**|
|---|---|
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