2025-03-31-accounts - UK Infantile Spasms Trust

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	Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	for theperiod	for theperiod	for theperiod
	From	Period start date			To	Period end date
		01	04	2024		31	03	2025

Section A Reference and administration details

Charity name UK Infantile Spasms Trust

Other names charity is known by

UKIST

Registered charity number (if any) 1172167

Charity's principal address 28 Overnhill Road

Bristol Postcode BS16 5DN

Names of the charity trustees who manage the charity

Name of person (or body) Dates acted if not for whole Trustee name Office (if any) entitled to appoint trustee (if year any) 1 Jenny Rawling Chair 2 Susan Blackburn Treasurer 3 Michelle Scoffield 4 Louisa Coyle 5 Alice Goldhill 6 Samia Sanders 7 Amy Dowding 8 Louise Derbyshire 9 Kelly Skinner 10 Chloe Cox 11 12

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name

N/A

Names and addresses of advisers (optional information)

Type of Adviser

Name Address

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Name of Chief Executive or names of Senior staff members (optional information)

Name Dates acted if not for whole year N/A

Section B Structure, governance and management

Description of the charity’s trusts

Charitable Incorporated Organisation (CIO) Type of governing document (eg. trust deed, constitution) Trust / CIO How the charity is constituted (eg. trust, association, company) Appointed by Trustees at the Annual General Meeting (AGM) Trustee selection methods

(eg. appointed by, elected by)

Additional governance issues (Optional information)

Charity Commission learning material (The essential trustee: what you You may choose to include need to know, what you need to do) additional information, where DBS check relevant, about: NSPCC safeguarding course  policies and procedures NCVO membership for ongoing Trustee support & guidance adopted for the induction and training of trustees; A new Trustee induction process is underway

the charity’s organisational The charity is strengthening the wider networks by attending national
structure and any wider medical conferences with plans to attend the Infantile Spasms Action
network with which the charity Network (ISAN) conference in Washington, USA.
works;
relationship with any related Membership of UK RET, CREA and ISAN parties;
Trustees are reimbursed for travel expenses for attending charity events
trustees’ consideration of and the AGM. The expense policy is derived from the Charity Commission
major risks and the system guidance.
and procedures to manage them.

A conflict-of-interest policy is in place; a conflict register is in place and conflict of interest is an agenda point at the monthly Board meetings A risk policy is in place; the risk register is updated as required by the Chair and Treasurer with a full annual review by the Board

Section C Objectives and activities

Summary of the objects of the charity set out in its governing document

The purpose of the charity is to provide 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.

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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. Granting £10,000 funding to the BEE Project at Kings College hospital with further commitment to supporting infantile Spasms projects in 2025.

c) Raising the awareness of the public and of the medical professions on any matter relating to the charity objectives. The medical education training course is in the final stages of completion and Summary of the main activities will be launched in 2025-26. 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)

Additional details of objectives and activities (Optional information)

UKIST has a documented grant award policy which is reviewed annually. The grant criteria and application form are on the website and are reviewed annually alongside the policy.

UKIST has a system for managing processes and policies and this is reviewed annually by the Board

You may choose to include further statements, where relevant, about:

policy on grant making;
policy programme related investment;

Trustees and the Facebook admin team are volunteers. Their contribution, knowledge and skills ensure that the charity is managed effectively, and that it is sustainable.

Over the next 12 months UKIST will be working with The Cranfield Trust to develop their strategy and business plan, which will lead to charity growth and long-term plans to appoint staff.

contribution made by volunteers.

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Section D Achievements and performance

Review UKIST’s annual newsletter, follow the link below Summary of the main achievements of the charity newsletter_2025.pdf during the year

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Section E Financial review

Brief statement of the charity’s policy on reserves Details of any funds materially in deficit

The charity has a reserves policy and has made great strides in actioning the necessary steps to ensure reserves are managed well, not only in terms of including 3 months operational costs but it also has designated funds for future expenditure commitments.

Not applicable

Further financial review details (Optional information)

The charity’s principal source of funding is by families affected by infantile spasms (IS), family friends and charity Trustees.

You may choose to include additional information, where relevant about:

£20,000 was generously donated by The Phillips 2012 Charitable Trust. In April 2025 UKIST will participate in the London Landmark Half Marathon (LLHM) and will be looking to expand on including participatory events in future.

the charity’s principal sources of funds (including any fundraising);
A new fundraising initiative is in progress, UKIST has applied to The
how expenditure has Spectris Foundation for a £5,000 grant to deliver a health and wellbeing supported the key objectives project for parents of IS babies/children. A Spectris employee, also a of the charity; member of the UKIST Facebook group, nominated UKIST for the grant award.
investment policy and objectives including any ethical investment policy adopted.
Expenditure is managed via a budget to ensure that costs are con trolled, and it is a point on the monthly Board meetings agenda. The annual budget is set at the Annual General Meeting (AGM) and budget variations are reviewed regularly to ensure funding is available to achieve the charity’s key objectives.

The Xero finance system has recently been introduced to provide accounting management and relevant income and expenditure reporting. This affords all Trustees full oversight as well as providing read-only access to the current bank account transactions.

A high interest, 60-day term new account will protect funds above £85,000, as per FSCS guidance. The bank of choice reinvests all its profits into the charity sector. Drafting an investment policy is in future plans.

Section F Other optional information

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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 Position (e.g. Secretary, Chair etc) Date

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Unaudited accounts

UK Infantile Spasms Trust

Year ended 31 March 2025

Prepared: 20th May 2025 Finalised: 15th July 2025 By Norton Accountancy Ltd

ACCOUNTS FOR UKIST FOR THE PERIOD ENDED 31 MARCH 2025 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 Norton Accountancy

Date

Licence no. 0521

CLIENT'S SIGNATURE

I have read the accounts prepared by Norton Accountancy and approve the figures

S Blackburn

Signed J Rawling Ka Signed

Date

UKIST

Profit & loss statement Year ended 31 March 2025

Income Donations received Grants Expenditure Accountancy Bank charges Computer Grants One-off research donation Medical platform Family support Insurance Training and research Subs Promotional items Printing, postage & stationary Admin Sponsorship Sundry Social media & website Profit for the year	£ £ £ £ 67,099 44,248 20,000 - 87,099 44,248 522 600 202 40 4 - 11,365 11,583 10,000 - 9,492 - 299 1,784 365 441 307 793 562 446 713 1,585 281 293 2,846 1,889 2,952 4,152 353 136 92 92 40,354 23,833 46,744 *20,415* 2025 *2024*	£ £ £ £ 67,099 44,248 20,000 - 87,099 44,248 522 600 202 40 4 - 11,365 11,583 10,000 - 9,492 - 299 1,784 365 441 307 793 562 446 713 1,585 281 293 2,846 1,889 2,952 4,152 353 136 92 92 40,354 23,833 46,744 *20,415* 2025 *2024*
		44,248 23,833

		*20,415*

UKIST Balance sheet Year ended 31 March 2025

Current assets Bank balance Accrued income Prepayments Current liabilities Accruals *Total assets less liabilities* Retained profits b/fwd Profit in year *Retained profits c/fwd*	152,823 20,192 3,072 176,087 -4,734 171,353 124,609 46,744 171,353 2025	124,909 - - 124,909 -300 124,609 104,194 20,415 124,609 *2024*

Notes to the accounts

1 - Restricted reserves

Going forward the trustees will be recognising restricted reserves to cover certain projects or investments. As at 31.3.2025, these were identified as totalling £62,343 for the investments in a medical education platform, on-going research costs and grants to families.

In addition, overheads for the next 12 months have also been restricted from spending so there is a contingency buffer in place to cover any drop in income. This totalled £9,541 and covers items such as AGM costs, conference costs, software, admin and various other smaller annual costs.

On that basis, the total restricted reserves at 31.3.2025 were £71,884. Going forward, the following note will be included:

At 01.04.2024 Net incoming resources Reallocation of reserves per note At 31.03.2025	Restricted for research & projects - - 62,343 62,343	Restricted overhead fund - - 9,541 9,541	Unrestricted Income Funds £ 124,609 124,609 46,744 46,744 71,884 - - 99,469 171,353	Unrestricted Income Funds £ 124,609 124,609 46,744 46,744 71,884 - - 99,469 171,353
			-

Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Report to the trustees/ Charity Name members of UK Infantile Spasms Trust On accounts for the year 5[th] April 2025 Charity no 1172167 ended (if any) Set out on pages 1+2 I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended 05/04/2020. Responsibilities and As the charity's trustees, you are responsible for the preparation of the basis of report accounts in accordance with the requirements of the Charities Act 2011 (“the 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 confirm that no material matters have
examiner's statement come to my attention in connection with the examination which gives me cause to 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:3.7.25
~~|~~|Date:3.7.25
~~|~~| |---|---|---|---| |Name:|SARAH JENKINS||| ||||| |Relevant professional|FMAAT||| |qualification(s) or body|qualification(s) or body||| ||||| |Address:|Norton Accountancy Ltd||| ||7 Soundwell Road||| ||Bristol BS16 4QG|||

Oct 2018

IER

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).

Give here brief details of any items that the examiner wishes to disclose .

None – the charity appears to be well run with no concerns.

Oct 2018

IER