Finance Score: 0

Governance Score: 2

Support Score: 4

No PartB

Good trustee age range: +3
Mainly male board: -1

Overall weighted support: +4

Overall GiG Score: 6

THE NEUROFIBROMATOSIS ASSOCIATION

The charity's mission is to enable people concerned about neurofibromatosis to find solutions appropriate for them.

Analysis by Giving is Great

Positives:

The charity has received backing from a grant maker
There have been no material income shortfalls in recent years
The Board appears to be well diversified in terms of age

Regulatory & Governance issues to consider:

The Board is predominantly male

Financial issues to consider:

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

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E		Income £k	Spending £k	Surplus/ Deficit £k	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff	Volun- teers
31/10/23		£456	£425	£32	n/a	n/a	n/a	n/a	n/a	n/a
31/10/22		£513	£448	£64	£106	£615	£567	15.2	5	1
31/10/21		£397	£391	£7	n/a	n/a	n/a	n/a	n/a	n/a
31/10/20		£325	£331	£-5	n/a	n/a	n/a	n/a	n/a	n/a
31/10/19		£467	£424	£44	n/a	n/a	n/a	n/a	n/a	n/a
31/10/18		£475	£472	£3	n/a	n/a	n/a	n/a	n/a	n/a
31/10/17		£561	£456	£105	£225	£504	£393	10.3	6	0
31/10/16		£567	£432	£135	£133	£399	£374	10.4	5	0
31/10/15		£417	£415	£2	n/a	n/a	n/a	n/a	n/a	n/a
31/10/14		£331	£396	£-65	n/a	n/a	n/a	n/a	n/a	n/a
31/10/13		£398	£349	£49	n/a	n/a	n/a	n/a	n/a	n/a
31/10/12		£447	£270	£176	n/a	n/a	n/a	n/a	n/a	n/a
31/10/11		£243	£318	£-74	n/a	n/a	n/a	n/a	n/a	n/a
31/10/10		£396	£308	£89	n/a	n/a	n/a	n/a	n/a	n/a
31/10/09	*	£318	£365	£-48	n/a	n/a	n/a	n/a	n/a	n/a
31/10/08	*	£388	£326	£62	n/a	n/a	n/a	n/a	n/a	n/a
31/10/07		£451	£442	£9	n/a	n/a	n/a	n/a	n/a	n/a
31/10/06		£465	£480	£-15	n/a	n/a	n/a	n/a	n/a	n/a
01/11/05		£510	£473	£37	n/a	n/a	n/a	n/a	n/a	n/a
31/10/04	*	£702	£875	£-173	n/a	n/a	n/a	n/a	n/a	n/a

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Highest pay bracket: less than £60,000

Balance Sheet History

Established: 25 years

www.nervetumours.org.uk

info@nervetumours.org.uk

02084391234

Charity Commission for England and Wales

Tweets

Listed activities

Disability
General Charitable Purposes
The Advancement Of Health Or Saving Of Lives

GiG Classification

Provides financial or material assistance

How it operates

Provides advocacy/advice/information
Provides human resources
Provides services
Sponsors or undertakes research

Where it operates

Throughout England And Wales,

Who it helps

Children/Young People
Elderly/Old People
Other Charities Or Voluntary Bodies
People With Disabilities
The General Public/Mankind

Who supports 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.

Major supporters in last 5 years

DCMS	£50,000
National Lottery Community Fund	£15,225
Sir Jules Thorn Charitable Trust	£1,000

Specific Donations

Amount	When Months	To be used for
Sir Jules Thorn Charitable Trust - The Neurofibromatosis Association - 12/04/21
£1,000	21/04/2021	Core Funding
DCMS - Coronavirus Community Support Fund
£50,000	09/09/2020	"The fund aims to:1) To reduce closures of essential charities that provide essential services to vulnerable groups during the COVID-19 crisis by ensuring they have the financial resources to ....more "The fund aims to:1) To reduce closures of essential charities that provide essential services to vulnerable groups during the COVID-19 crisis by ensuring they have the financial resources to operate, thereby reducing the burden on public services.2) To ensure essential services are provided to vulnerable people, both in the short and long term through increased community support through the work of charitable organisations."
National Lottery Community Fund - Extended National Neurofibromatosis Helpline
£5,225	17/04/2020 4	The funding will be used to extend the helpline service for people living with Neurofibromatosis who need support during the coronavirus pandemic. The project aims to advise people who are at high ....more The funding will be used to extend the helpline service for people living with Neurofibromatosis who need support during the coronavirus pandemic. The project aims to advise people who are at high risk.
National Lottery Community Fund - Family Information Days
£10,000	24/02/2020 11	The funding will be used to host two information days for anyone affected by Neurofibromatosis, including their carers and families. The project aims to provide guidance and advice for those living ....more The funding will be used to host two information days for anyone affected by Neurofibromatosis, including their carers and families. The project aims to provide guidance and advice for those living with the effects of this condition and empowering them to access services.
National Lottery Community Fund - Family Information Days
£10,000	31/08/2018 12	The funding will be used to run family information days for people living with Neurofibromatosis. The project aims to provide advice, information and emotional support.
National Lottery Community Fund - Family Information Day
£4,635	25/01/2017 12	Family Information Day
National Lottery Community Fund - Family Information Day
£4,535	21/01/2017 12	The Neurofibromatosis Association will use the grant to run a family information day for anyone who is affected by Neurofibromatosis in Wales. This grant for Â£4,535 will fund venue hire, ....more The Neurofibromatosis Association will use the grant to run a family information day for anyone who is affected by Neurofibromatosis in Wales. This grant for Â£4,535 will fund venue hire, refreshments, AV system, travel and accommodation for speakers and staff, stationery and translation costs.
National Lottery Community Fund - Family Information Days
£10,000	18/11/2015 12	This charity will use the funding to run three family information days in Norwich, Guildford and Manchester for anyone affected by neurofibromatosis. This will provide families and carers with ....more This charity will use the funding to run three family information days in Norwich, Guildford and Manchester for anyone affected by neurofibromatosis. This will provide families and carers with specialist information and guidance, peer support and access to medical experts, improving the knowledge and coping skills of families living with neuroffibromatosis and reducing isolation amongst existing families and those who are newly diagnosed.

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Data sourced from Donors via 360 Giving

How is it governed?

Trustees (8)

Current Trustees appointed

Gender Split

Age Range of Trustees: 34-76

ALEXIS ROHAN CHANMUGAM Appointed: 2020, Occupation: Company Director

JONATHAN PETER BRUCE Appointed: 2020, Occupation: Company Ceo

MATTHEW WILLIAM BUCHAN JONES Appointed: 2021, Occupation: Investment Management

MICHAEL EZRAN FRY Appointed: 2014, Occupation: Barrister

PROFESSOR MEENA UPADHYAYA Appointed: 2021, Occupation: Medical Researcher

PROFESSOR ROSALIE ELAINE FERNER Appointed: 2017, Occupation: Consultant Neurologist

RICHARD ERIC GREENWAY GOODE (Chair) Appointed: 2015, Occupation: Chartered Surveyor

STEWART EDWARD LEE Appointed: 2011, Occupation: Digital Marketing Manager

Legal constitution

Charitable company registered in England & Wales on 05/01/2000, number: 1078790
Registered at Companies House on 30/06/1999, number: 03798407

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
Investing charity funds policy and procedures
Investment
Paying staff
Risk management
Safeguarding policy and procedures
Safeguarding vulnerable beneficiaries
Serious incident reporting policy and procedures
Social media policy and procedures
Trustee conflicts of interest policy and procedures
Trustee expenses policy and procedures
Volunteer management

Filing Record

20 returns made; AR09: 43 days late, AR08: 183 days late, AR04: 36 days late,

Main office

First Floor
44 Coombe Lane
London
SW20 0LA

Objectives

TO RELIEVE PERSONS SUFFERING FROM NEUROFIBROMATOSIS.

Defined Area of Benefit:

NOT DEFINED