Finance Score: -5

Governance Score: -3

Support Score: 6

Low unrestricted reserves: -2
Reasonable growth: +1
Deficit latest year: -2
Fundraising costs high: -2

No volunteer policy: -2
Only 4 Trustees: -1

Grant maker support: +6

Overall GiG Score: -2

BATTEN DISEASE FAMILY ASSOCIATION

A supportive, informative, national networking organisation for the families, carers and professionals giving care to children and adults with Batten Disease and for promoting awareness of, and research into, the disease

Analysis by Giving is Great

Positives:

The charity has received backing from a grant maker
There has been reasonable growth in spending over the last 3 years relative to the previous period
There have been no material income shortfalls in recent years

Regulatory & Governance issues to consider:

Although this charity works with volunteers it does not have a Volunteer Management policy
There are only 4 trustees
Over half the Board have joined recently

Financial issues to consider:

Unrestricted reserves appear to be dangerously low at the latest year end
Income was lower than spending in the latest year
Fundraising costs are high relative to funds raised

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E	Income £k	Spending £k	Surplus/ Deficit	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff	Volun- teers
31/08/23	£540	£601	£-61	£93	£435	£139	2.8	5	12
31/08/22	£546	£555	£-9	£81	£496	£414	9	5	10
31/08/21	£635	£309	£326	£45	£505	£382	14.9	3	3
31/08/20	£274	£279	£-5	n/a	n/a	n/a	n/a	n/a	1
31/08/19	£374	£280	£94	n/a	n/a	n/a	n/a	n/a	1
31/08/18	£442	£506	£-64	£0	£0	£0	n/a	0	0
31/08/17	£339	£345	£-5	£0	£0	£0	n/a	0	0
31/08/16	£329	£452	£-123	£0	£0	£0	n/a	0	0
31/08/15	£305	£431	£-126	£0	£0	£0	n/a	0	0
31/08/14	£285	£267	£18	£0	£0	£0	n/a	0	0
31/08/13	£278	£321	£-43	£0	£0	£0	n/a	0	0
31/08/12	£249	£140	£109	£0	£0	£0	n/a	0	0
31/08/11	£216	£142	£74	£0	£0	£0	n/a	0	0
31/08/10	£184	£87	£97	£0	£0	£0	n/a	0	0
31/08/09	£84	£74	£10	£0	£0	£0	n/a	0	0
31/08/08	£99	£40	£59	£0	£0	£0	n/a	0	0
31/08/07	£41	£49	£-7	£0	£0	£0	n/a	0	0
31/08/06	£23	£14	£9	£0	£0	£0	n/a	0	0
31/08/05	£38	£17	£21	£0	£0	£0	n/a	0	0
31/08/04	£57	£5	£51	£0	£0	£0	n/a	0	0

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Financial Ratios

Fundraising Costs/Relevant Income: 20.8%
Fundraising Costs/Total Spending: 15.5%
Senior Staff Costs/Total Spending: 28%
Highest pay band: £70,000-£80,000
Liabilities/Assets: 13%
Liabilities/Income: 12%
Unrestricted Funds/Total Funds: 32%
Reserves/Spending: 2.8 months
Net Current Assets/Spending: 9 months
Quick Ratio: 7.4

Asset Split ?

Established: 23 years

www.bdfa-uk.org.uk

admin@bdfa-uk.org.uk

07354486586

Charity Commission for England and Wales

Tweets

Listed activities

Disability
Education/Training
The Advancement Of Health Or Saving Of Lives

GiG Classification

Medical research

How it operates

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

Where it operates

Northern Ireland, Scotland, Throughout England And Wales,

Who it helps

Children/Young People
People With Disabilities

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	£35,820
National Lottery Community Fund	£9,140
CAF	£7,722
True Colours Trust	£5,000

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - Peer Befriending Programme
£9,140	08/10/2021	The funding will be used deliver a peer befriending programme supporting families affected by Batten disease. The project aims to improve resilience and reduce isolation.
True Colours Trust - Sessions for siblings of children with Batten Disease – COVID19 response
£5,000	06/10/2020	Sessions for siblings of children with Batten Disease – COVID19 response
DCMS - Coronavirus Community Support Fund
£35,820	08/07/2020	"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."
CAF - Grant to The Batten Disease Family Association
£7,722	22/06/2020 3	Grant to The Batten Disease Family Association to support the organisation through COVID19
The Fore - RAFT COVID-19 response grant to The Batten Disease Family Association
£4,000	08/06/2020 36	Grant from The Fore's RAFT Immediate Response Fund to The Batten Disease Family Association, as part of The Fore's COVID-19 Response programme.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (4)

Current Trustees appointed

BOB THOMPSON Appointed: 2023

MARK THOMPSON Appointed: 2023

SIMON SEWART Appointed: 2023

ZLATKO SISIC (Chair) Appointed: 2023, Other trusteeship: BATTEN DISEASE FAMILY ASSOCIATION CIO,

Legal constitution

Charity registered in England & Wales on 07/02/2001, number: 1084908

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

Filing Record

20 returns made; all on time

Main office

PO Box 379
Shipley
BD18 9GE

Objectives

A) PRESERVE AND PROTECT THE HEALTH AND PROMOTE THE WELFARE OF PERSONS AFFECTED BY ALL TYPES OF NEURONAL CERIOD LIPOFUSCINOSIS (NCL) COMMONLY KNOWN AS BATTEN DISEASE.B) TO ADVANCE THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC ON THE SUBJECT OF BATTEN DISEASE AND ITS IMPLICATIONS FOR THE FAMILY.C) TO PROMOTE RESEARCH INTO THE MANAGEMENT OF BATTEN DISEASE AND TO PUBLISH THE USEFUL RESULTS THEREOF AND TO SUPPORT ORGANISATIONS PROMOTING RESEARCH INTO BATTEN DISEASE.

Defined Area of Benefit:

NOT DEFINED. IN PRACTICE, THE UNITED KINGDOM.

Data Sources