UK INFANTILE SPASMS TRUST

Registered charity 1172167 · accounts filings on the Charity Commission register · also known as UKIST - UK INFANTILE SPASMS TRUST

Raising money to help families who have children who suffer from spasms with support and care.

Objects

THE RELIEF OF THE NEEDS OF THOSE SUFFERING FROM INFANTILE SPASMS OR WEST SYNDROME BY (BUT NOT EXCLUSIVELY):(A) THE PROVISION OF INFORMATION, ADVICE, OTHER ASSISTANCE AND SUPPORT TO CHILDREN, PARENTS, FAMILIES AND CARERS OF THOSE AFFECTED BY INFANTILE SPASMS OR WEST SYNDROME;(B) THE PROMOTION OF RESEARCH INTO THE CAUSES AND TREATMENT OF INFANTILE SPASMS OR WEST SYNDROME AND THE PUBLICATION OF THE USEFUL RESULTS OF SUCH RESEARCH;(C) RAISING THE AWARENESS OF THE PUBLIC AND OF THE MEDICAL PROFESSIONS ON ANY MATTER RELATED TO THE CHARITIES OBJECTS(D) PROVIDING INFORMATION AND TRAINING TO THE MEDICAL PROFESSIONS ON ANY MATTER RELATED TO THE CHARITIES OBJECTS.

The charity’s charitable objects and area of benefit, quoted from its governing document as held on the Charity Commission register.

Causes: General Charitable Purposes · The Advancement Of Health Or Saving Of Lives · Disability · website · Get email alerts

Registered contact address: South Gloucestershire, South West, England (from the postcode on the register)

Latest income

£87k

Latest spending

£40k

Registered

2017

Accounts read

FY2025

Financial health, per its FY2025 accounts

The accounts state that the charity held unrestricted reserves of £99,469 at the end of the period, with a total profit for the year of £20,415. The trustees report that the charity has a reserves policy targeting three months of operational costs and has designated funds for future commitments. The independent examiner confirmed that no material matters came to their attention that would cause concern about the charity's governance or accounts.

Automated summary of the FY2025 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Largest income source: Donations received

“The charity’s principal source of funding is by families affected by infantile spasms (IS), family friends and charity Trustees. £20,000 was generously donated by The Phillips 2012 Charitable Trust.” — page 5

Per its FY2025 accounts as filed with the Charity Commission.

Reserves policy: three months operational costs (reserves figure: £99k)

“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.” — page 5

Per its FY2025 accounts as filed with the Charity Commission.

Accounts independently examined (not a full audit). Discloses 5 of 6 completeness components.

Policies the charity declares

In its annual return the charity told the Commission that it has the policies listed below. This is self-declared: it is not verified by the Commission or by this site, and it is not evidence of how a policy works in practice.

Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
Investing charity funds policy and procedures
Safeguarding policy and procedures
Safeguarding vulnerable beneficiaries
Serious incident reporting policy and procedures
Social media policy and procedures

From the charity’s annual return (Part A, self-declared)

Answers and figures the charity gave in Part A of its annual return to the Charity Commission. They are self-declared: not verified by the Commission or by this site. Only positive answers and figures are listed; items not listed are simply not shown.

Self-declared on the annual return for the financial year ending 05/04/2024

Volunteers: 5

Source: this charity’s annual returns on the Charity Commission register.

Public fundraising profile: JustGiving — UK Infantile Spasms Trust (UKIST) (matched by registered charity number).

Funders the charity credits

Named as funders/supporters on the charity’s own website (the charity’s claim, distinct from accounts-verified grants).

Child Neurology Foundation — “Thanks to a grant from the child neurology foundation UKIST has been able to take forward a project to write a book for children about infan…” (source page)

Public profiles (found on the charity’s own website): facebook

Register events

Received assets from another charity (04/03/2025) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Trustees · trustee networks

Amy Louise Dowdingchair
Alice Goldhill
Charlotte Olivia House
Charlotte Rachel Law
Chloe Amber Louise Cox
JENNIFER RAWLING
Louisa Coyle
Louise Elizabeth Derbyshire
SAMIA SANDERS

Trustee list from the Charity Commission register (current, not historical).

Operates in: Throughout England And Wales

Income and spending

Financial year end	Income	Spending
31/03/2025	£87k	£40k
05/04/2024	£44k	£24k
05/04/2023	£24k	£16k
05/04/2022	£46k	£17k
05/04/2021	£40k	£16k

Common questions

Is UK INFANTILE SPASMS TRUST financially healthy?

Per its FY2025 accounts: The accounts state that the charity held unrestricted reserves of £99,469 at the end of the period, with a total profit for the year of £20,415. The trustees report that the charity has a reserves policy targeting three months of operational costs and has designated funds for future commitments. The independent examiner confirmed that no material matters came to their attention that would cause concern about the charity's governance or accounts. Its FY2025 accounts were independently examined.

Who funds UK INFANTILE SPASMS TRUST?

Funders whose own accounts filings name UK INFANTILE SPASMS TRUST as a grant recipient include THE HISCOX FOUNDATION, THE GOLDHILL FAMILY CHARITABLE TRUST.

Known funders

Grants to this charity found in funders’ own accounts filings.

Funder	Year	Amount
THE HISCOX FOUNDATION	FY2025	£16k
THE GOLDHILL FAMILY CHARITABLE TRUST	FY2024	£1k
THE HISCOX FOUNDATION	FY2024	£500

Government & lottery funding

Grants to this charity published as open data by government and lottery funders (360Giving).

Funder	Date	Amount	Purpose
UK government	23/07/2020	£3k	Coronavirus Community Support Fund

Funders of similar charities

Funders whose accounts show grants to charities similar to this one (and no recorded grant to this charity) — a starting list for fundraisers.

Funder	Similar charities funded	Amount to them
THE ELIZABETH AND PRINCE ZAIGER TRUST	2	£39k
THE WO STREET CHARITABLE FOUNDATION	2	£8k
PRISM THE GIFT FUND	1	£95k
THE HARRISON-FRANK FAMILY FOUNDATION (UK) LIMITED	1	£50k
PETER SOWERBY FOUNDATION	1	£25k
THE BARBARA WARD CHILDREN'S FOUNDATION	1	£18k
SUSANNA PEAKE CHARITABLE TRUST	1	£15k
THE TRUE COLOURS TRUST	1	£5k

Charities like this

Semantically similar by activities and financial character, from our analysed corpus. Compare with CHILDREN'S RESPITE TRUST.

CHILDREN'S RESPITE TRUST income £403k
TREWAN SANDS CHILDREN'S TRUST income £207k
ACTION FOR STAMMERING CHILDREN income £310k
OUR KIDS income £19.3m
THE STATHAM FAMILY CHARITABLE TRUST income £62k
NEW SPRINGS UK income £621k

Side by side with its peers

Charity	Income	Top pay band	Staff >£60k	Reserves vs policy	Fundraising cost	Going concern
UK INFANTILE SPASMS TRUST	£87k	—	0	above	—	no doubt
CHILDREN'S RESPITE TRUST FY2025	£403k	£39,747	0	unclear	58.6%	no doubt
TREWAN SANDS CHILDREN'S TRUST FY2025	£207k	Under £60,000	0	below	—	no doubt
ACTION FOR STAMMERING CHILDREN FY2025	£310k	—	—	within	20.9%	no doubt
OUR KIDS FY2024	£19.3m	Under £60,000	0	unclear	—	no doubt
THE STATHAM FAMILY CHARITABLE TRUST FY2025	£62k	—	0	unclear	—	no doubt

Each row is that charity’s latest analysed filing; every value is quote-backed on its own page.