Finance Score: 3

Governance Score: 2

Support Score: 7

Fundraising costs low: +3

Only 4 Trustees: -1
Good trustee age range: +3

Grant maker support: +7

Overall GiG Score: 12

ACTION DUCHENNE LIMITED

Action Duchenne campaigns and supports research for a cure for Duchenne and Becker Muscular Dystrophy. Duchenne is a severe and progressive muscle wasting disease that leaves young people paralysed and facing early death by late teens. The Charity has launched a Registry for Duchenne patients to help to progress Clinical trials.

Analysis by Giving is Great

Positives:

Spending has increased over the last 3 years relative to the previous period
There have been no material income shortfalls in recent years
Fundraising costs are low relative to funds raised
A significant proportion of recent income was derived from major grant makers

Regulatory & Governance issues to consider:

There are only 4 trustees

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
31/03/23		£712	£581	£131	£36	£551	£480	9.9	9	18
31/03/22		£562	£360	£202	£75	£420	£420	14	8	125
31/03/21		£494	£368	£126	n/a	n/a	n/a	n/a	n/a	122
31/03/20?		£758	£782	£-24	£97	£113	£92	1.4	6	117
31/10/18	*	£539	£744	£-205	£78	£137	£57	0.9	8	20
31/10/17		£776	£610	£166	£76	£342	£192	3.8	9	0
31/10/16		£701	£951	£-250	£73	£176	£127	1.6	11	0
31/10/15	*	£701	£765	£-65	£92	£375	£312	4.9	11	0
31/10/14		£575	£790	£-215	£92	£439	£368	5.6	11	0
31/10/13		£732	£766	£-34	£92	£655	£576	9	12	0
31/10/12		£795	£1,062	£-267	£117	£664	£589	6.7	12	0
31/10/11		£726	£873	£-147	£153	£931	£517	7.1	10	0
31/10/10		£878	£1,120	£-242	£143	£1,077	£576	6.2	9	0
31/10/09		£1,811	£1,086	£725	£239	£1,320	£518	5.7	10	0
31/10/08		£1,254	£1,093	£161	£102	£594	£448	4.9	10	0
31/10/07		£614	£430	£184	£65	£468	£333	9.3	9	0
31/10/06		£455	£299	£156	£0	£0	£0	n/a	0	0
31/10/05		£245	£135	£110	£0	£0	£0	n/a	0	0
31/10/04		£31	£0	£31	£0	£0	£0	n/a	0	0

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Financial Ratios

Fundraising Costs/Relevant Income: 6.5%
Fundraising Costs/Total Spending: 6.2%
Senior Staff Costs/Total Spending: 13%
Highest pay band: £60,000-£70,000
Liabilities/Assets: 13%
Liabilities/Income: 12%
Unrestricted Funds/Total Funds: 87%
Reserves/Spending: 9.9 months
Net Current Assets/Spending: 11 months
Quick Ratio: 7.6

Asset Split ?

Established: 20 years

www.actionduchenne.org

info@actionduchenne.org

07535 498 506

Charity Commission for England and Wales

Tweets

Listed activities

Disability
Education/Training
General Charitable Purposes
The Advancement Of Health Or Saving Of Lives

GiG Classification

Medical education & research

How it operates

Makes Grants to Individuals
Makes Grants to Organisations
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
The General Public/Mankind

Who works here?

9 employees
18 volunteers

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.

Major supporters in last 5 years

National Lottery Community Fund	£489,738
DCMS	£75,560
Garfield Weston Foundation	£60,000
Co-Operative Group	£2,087

Specific Donations

Amount	When Months	To be used for
Co-Operative Group - Grant to The Mind and Sole Hub
£2,087	21/10/2023	Our project is a health and wellbeing hub that provides support for the community, including loneliness, isolation, and mental health symptoms. We offer peer-to-peer support for all ages and needs.
National Lottery Community Fund - Mind and Sole Walking and Talking groups
£9,608	22/09/2023	The funding will be used to pay for a walk leader role for their walking and talking group. This will enable them to provide extra walks for existing and new groups and train more volunteers as walk ....more The funding will be used to pay for a walk leader role for their walking and talking group. This will enable them to provide extra walks for existing and new groups and train more volunteers as walk leaders as well as providing access to mental health support and a social support network. The project aims to support people to help reduce isolation improve mental health and wellbeing.
Garfield Weston Foundation - Multi-Year Grant (2 Years) award
£30,000	01/04/2022	Supporting families through diagnosis and impossible decisions
National Lottery Community Fund - All-through Support
£480,130	01/09/2021	The funding will be used by the group to fund expanded and enhanced support activities for children and families affected by Duchene muscular dystrophy. It will support parents through diagnosis by ....more The funding will be used by the group to fund expanded and enhanced support activities for children and families affected by Duchene muscular dystrophy. It will support parents through diagnosis by employing a nurse/support worker who will work with specialist clinical centres across England to offer immediate support to every family diagnosed without them needing to ask for help. Help families to make informed decisions by offering regional science workshops and online shows to help them understand the illness as well support through mentoring and 1:1 support for young people and their families. The group will also look to enhance it support for end of life care and bereavement for those families experiencing loss as a result of the illness.
Garfield Weston Foundation - Multi-Year Grant (2 Years) award
£30,000	23/10/2020	Supporting families through diagnosis and impossible decisions
DCMS - Coronavirus Community Support Fund
£75,560	05/10/2020	"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 - Takin' Charge
£498,500	11/05/2011 60	A new project by Action Duchenne Limited (ADL) that aims to improve the life chances and future opportunities for young men (YM) with the incurable severe muscle wasting condition Duchenne Muscular ....more A new project by Action Duchenne Limited (ADL) that aims to improve the life chances and future opportunities for young men (YM) with the incurable severe muscle wasting condition Duchenne Muscular Dystrophy (DMD) through the development of an innovative, targeted, Open College Network accredited, online programme specific to YM with DMD who are going through the transition to adulthood.

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Data sourced from Donors via 360 Giving

How is it governed?

Trustees (4)

Current Trustees appointed

Gender Split

Age Range of Trustees: 43-73

EMMA ROSE SIMMONDS Appointed: 2024, Occupation: Administrator

GARY FEGAN Appointed: 2017, Occupation: Head Of Innovation

MARK SILVERMAN Appointed: 2008, Occupation: Local Authority Planner

ROGER COCKERTON Appointed: 2019, Occupation: Senior Finance Professional, Other trusteeship: THE DEBENHAM PROJECT (DEMENTIA - CARING FOR THE CARERS),

Legal constitution

Charitable company registered in England & Wales on 09/02/2004, number: 1101971
Registered at Companies House on 15/09/2003, number: 04899036

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Campaigns and political activity policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
Engaging external speakers at charity events policy and procedures
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
Investing charity funds policy and procedures
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

19 returns made; AR18: 4 days late, AR15: 21 days late,

Main office

Action Duchenne
Wellesley House
Duke Of Wellington Avenue
LONDON
SE18 6SS

Objectives

THE RELIEF OF PERSONS WITH DUCHENNES AND BECKER MUSCULAR DYSTROPHY THROUGH SUCH MEANS AS ARE CHARITABLE BY LAW.

Defined Area of Benefit:

NOT DEFINED.

Data Sources