Kleefstra Syndrome UK

Registered charity 1208059 CIO Registered since 2024

Operates: Throughout England And Wales

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Board DNA

How this board is put together, from Charity Commission trustee records and Companies House - deterministic, no AI.

trustees on the board

2.4y median 3y

average tenure

longest tenure

trustees past 6 years

2.5y

average years in governance

8 vs 0 portfolio

first-time trustees

company-linked trustees

Sector coverage

Disability 8

Gaps to watch

No commercial or business experience on the board
Narrow spread of causes across the board
Mostly recent joiners - limited long-term continuity

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Related organisations

Barbara A Shuttleworth Memorial Trust Similar size; both Disability
Dancing EYE Syndrome Support Trust Similar size; both Disability
Childrens Hope Foundation Similar size; both Disability
People in Need Supporters Similar size; both Disability
Basil Houghton Memorial Trust Similar size; both Disability
The Owls of Pill Similar size; both Disability

Boards that overlap with this one through shared trustees, or govern in the same field. Deterministic, from public records.

Contact

Website	www.kleefstrasyndrome.org
Email	chair@kleefstrasyndrome.org
Phone	01335346772
Address	3-4 spire house, waterside business park, ashbourne, DE6 1DG

Finances

£15,339 latest income

Year	Income	Spending
2024	£3,587	£13,271
2025	£15,339	£2,012

What it does

What

Disability

Who

People With Disabilities

How

Provides Advocacy/advice/information

Charitable objects

THE OBJECTS OF THE CIO ARE TO RELIEVE THE NEEDS OF PEOPLE WITH KLEEFSTRA SYNDROME AND THEIR FAMILIES AND PEOPLE CONNECTED TO, CARES FOR, SUPPORTS, OR WORKS WITH SOMEONE WITH KLEEFSTRA SYNDROME BY:-• INCREASING AWARENESS OF THE SYMPTOMS OF KLEEFSTRA SYNDROME TO SUPPORT DIAGNOSIS AND PROFESSIONAL AND MEDICAL ASSISTANCE;• THE PROVISION OF INFORMATION, ADVICE AND OTHER ASSISTANCE, TO SUPPORT THOSE AFFECTED WITH KLEEFSTRA SYNDROME;• THE PROMOTION OF RESEARCH INTO THE CAUSES, TREATMENT AND MANAGEMENT OF KLEEFSTRA SYNDROME AND • DISSEMINATING AND PUBLISHING THE USEFUL RESULTS OF ANY SUCH RESEARCH; AND• UNDERTAKING ANY OTHER CHARITABLE ACTIVITIES IN CONNECTION WITH KLEEFSTRA SYNDROME.NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH [SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005] AND [SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008].

Governing document: CIO - FOUNDATION Registered 30 Apr 2024

Trustees (8)

8trustees

0aged 70+

Wendy Elizabeth Hocking Chair since 2023
Anna Gibbs since 2023
Annette Read since 2026
Barbara Janet Roberts since 2023
Courtney Helliwell since 2024
Dr Katherine Palmer since 2023
Hannah Banfield since 2024
Vytautas Berzanskis since 2023

Connected charities (0)

No charities share a trustee (from current data).

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