Finance Score: 0

Governance Score: 0

Support Score: 4

No PartB

Static board: -3
Gender balanced board: +3

Large volunteers +3
Grant maker support: +1

Overall GiG Score: 4

THE 1P36 FAMILY TRUST

Provides support to children and adults affected by 1p36 deletion syndrome and their families in the UK, in particular, but not exclusively, by arranging a conference every other year to share research and practice concerning management of symptoms, treatment and sharing educational content about 1p36 deletion syndrome.

Analysis by Giving is Great

Positives:

This charity has been successful in attracting volunteers relative to its size
A significant proportion of recent income was derived from major grant makers

Regulatory & Governance issues to consider:

The Board composition appears to be rather static

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data

Established: 5 years

www.1p36.co.uk

1p36familytrust@gmail.com

07917153834

Charity Commission for England and Wales

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Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E	Income	Spending	Surplus/ Deficit	Volun- teers
31/03/23	£13,404	£4,602	£8,802	1
31/03/22	£10,644	£15,145	£-4,501	8
31/03/21	£3,736	£576	£3,160	0
31/03/20	£21,307	£7,184	£14,123	4

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Highest pay bracket: less than £60,000

Listed activities

The Advancement Of Health Or Saving Of Lives

How it operates

Provides advocacy/advice/information
Provides services

Where it operates

Northern Ireland, Scotland, Throughout England And Wales,

Who it helps

People With Disabilities

Who works here?

Unknown number of employees
1 volunteer

Who's supporting them? ?

Donations from Grant Makers ?

We have details on the following significant donations. Multi-year donations are allocated to the years for which they are earmarked.

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - 1p36 Family Conference 2021
£10,000	13/03/2020 13	The funding will be used to run the first national conference for families/carers of children suffering from 1p36 deletion syndrome, a chromosome disorder which causes severe disabilities and other ....more The funding will be used to run the first national conference for families/carers of children suffering from 1p36 deletion syndrome, a chromosome disorder which causes severe disabilities and other health problems. The aim of the conference, which can be attended by the children as well as their parents/carers, is to bring people together to share experiences and learn new therapies and coping strategies to enable the children to have better lives.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (3)

Current Trustees appointed

Gender Split

GARETH JAMES TWYNAM Appointed: 2019

MARY ROSE DANIELS Appointed: 2019

REBECCA LOUISE ROLLESTON (Chair) Appointed: 2019

Legal constitution

Charity registered in England & Wales on 12/02/2019, number: 1181988

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Complaints policy and procedures
Engaging external speakers at charity events policy and procedures
Financial reserves policy and procedures
Safeguarding policy and procedures
Safeguarding vulnerable beneficiaries
Serious incident reporting policy and procedures
Trustee conflicts of interest policy and procedures

Filing Record

4 returns made; all on time

Main office

2 Lambardes
New Ash Green
LONGFIELD
Kent
DA3 8HX

Objectives

THE OBJECTS OF THE CIO ARE:THE ADVANCEMENT OF HEALTH FOR THE PUBLIC BENEFIT BY THE PROVISION OF SUPPORT TO CHILDREN AND ADULTS AFFECTED BY 1P36 DELETION SYNDROME AND THEIR FAMILIES IN THE UK, IN PARTICULAR, BUT NOT EXCLUSIVELY BY ARRANGING A CONFERENCE TO SHARE RESEARCH AND PRACTISE CONCERNING MANAGEMENT OF SYMPTOMS, TREATMENT AND SHARING EDUCATIONAL CONTENT ABOUT 1P36 DELETION SYNDROME.

Data Sources