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 7 8 9 10 11 12 13 14 15 16 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 | |||
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 |
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 |
|---|---|