Finance Score: -3

Governance Score: 9

Support Score: 7

Positive trading contribution: +2;Fundraising costs high: -5

Good trustee age range: +3
Dynamic board: +3
Gender balanced board: +3

Grant maker support: +7

Overall GiG Score: 13

ALEX, THE LEUKODYSTROPHY CHARITY

A charity to promote awareness, research & prevention of leukodystrophy.Alex, The Leukodystrophy Charity enables sufferers of leukodystrophy worldwide a forum to come together to support and advise each other. We provide financial & emotional support as well as practical advice & updates on research innovations, promote and fund research & education for medical professionals.

Analysis by Giving is Great

Positives:

More than half of total income was derived from trading and fees in the latest year
Spending has increased over the last 3 years relative to the previous period
There have been no material income shortfalls in recent years
A significant proportion of recent income was derived from major grant makers including the Government
The Board appears to be well diversified in terms of age and gender and dynamic in terms of composition

Regulatory & Governance issues to consider:

Over half the Board have joined recently

Financial issues to consider:

Fundraising costs are extremely high relative to funds raised

Established: 20 years

www.alextlc.org

info@alextlc.org

02077014388

Charity Commission for England and Wales

Tweets

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
30/06/22		£892	£872	£20	£659	£326	£251	3.5	25	55
30/06/21		£732	£707	£25	£515	£306	£182	3.1	24	55
30/06/20		£776	£598	£179	£474	£281	£126	2.5	21	50
30/06/19		£635	£639	£-4	£507	£102	£48	0.9	21	50
30/06/18		£687	£687	£0	£488	£106	£39	0.7	20	47
30/06/17		£571	£595	£-23	£454	£106	£57	1.1	18	0
30/06/16		£635	£581	£54	£435	£129	£25	0.5	18	0
30/06/15		£597	£577	£20	£487	£75	£11	0.2	22	0
30/06/14	*	£433	£460	£-28	£0	£0	£0	n/a	0	0
30/06/13		£334	£279	£55	£0	£0	£0	n/a	0	0
30/06/12		£280	£283	£-2	£0	£0	£0	n/a	0	0
30/06/11		£193	£194	£-1	£0	£0	£0	n/a	0	0
30/06/10		£144	£146	£-2	£0	£0	£0	n/a	0	0
30/06/09		£136	£142	£-6	£0	£0	£0	n/a	0	0
30/06/08		£91	£84	£7	£0	£0	£0	n/a	0	0
30/06/07		£165	£172	£-7	£0	£0	£0	n/a	0	0
30/06/06	*	£130	£97	£33	£0	£0	£0	n/a	0	0
30/06/05		£16	£10	£6	£0	£0	£0	n/a	0	0

Show more rows -->

Show financials table -->

Download accounts

Financial Ratios

Fundraising Costs/Relevant Income: 354.6%
Fundraising Costs/Total Spending: 75.5%
Highest pay band: Less than £60,000
Liabilities/Assets: 18%
Liabilities/Income: 8%
Unrestricted Funds/Total Funds: 77%
Reserves/Spending: 3.5 months
Net Current Assets/Spending: 4 months
Quick Ratio: 7.5

Asset Split ?

Listed activities

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

How it operates

Makes Grants to Individuals
Makes Grants to Organisations
Other charitable activities
Provides advocacy/advice/information
Provides services
Sponsors or undertakes research

Where it operates

Afghanistan, Akrotiri, Albania, Algeria, American Samoa, Andorra, Angola, Anguilla, Antarctica, Antigua And Barbuda, Argentina, Armenia, Aruba, Australia, Austria, Azerbaijan, Bahrain, Bangladesh, Barbados, Belarus, Belgium, Belize, Benin, Bermuda, Bhutan, Bolivia, Bosnia And Herzegovina, Botswana, Brazil, British Indian Ocean Territory, British Virgin Islands, Brunei, Bulgaria, Burkina Faso, Burma, Burundi, Cambodia, Cameroon, Canada, Cape Verde, Cayman Islands, Central African Republic, Chad, Chile, China, Christmas Island, Cocos (KEELING) ISLANDS, Colombia, Comoros, Congo, Congo (Democratic Republic), Cook Islands, Costa Rica, Croatia, Cuba, Cyprus, Czech Republic, Denmark, Dhekelia, Djibouti, Dominica, Dominican Republic, East Timor, Easter Island, Ecuador, Egypt, El Salvador, Equatorial Guinea, Eritrea, Estonia, Eswatini, Ethiopia, Falkland Islands, Faroe Islands, Fiji, Finland, France, French Guiana, French Polynesia, Gabon, Georgia, Germany, Ghana, Gibraltar, Greece, Greenland, Grenada, Guadeloupe, Guam, Guatemala, Guernsey, Guinea, Guinea-bissau, Guyana, Haiti, Honduras, Hong Kong, Hungary, Iceland, India, Indonesia, Iran, Iraq, Ireland, Isle Of Man, Israel, Italy, Ivory Coast, Jamaica, Japan, Jersey, Jordan, Kazakhstan, Kenya, Kiribati, Kosovo, Kuwait, Kyrgyzstan, Laos, Latvia, Lebanon, Lesotho, Liberia, Libya, Liechtenstein, Lithuania, Luxembourg, Macau, Macedonia, Madagascar, Malawi, Malaysia, Maldives, Mali, Malta, Marshall Islands, Martinique, Mauritania, Mauritius, Mayotte, Mexico, Micronesia, Moldova, Monaco, Mongolia, Montenegro, Montserrat, Morocco, Mozambique, Namibia, Nauru, Nepal, Netherlands, New Caledonia, New Zealand, Nicaragua, Niger, Nigeria, Niue, Norfolk Island, North Korea, Northern Ireland, Northern Mariana Islands, Norway, Occupied Palestinian Territories, Oman, Pakistan, Palau, Panama, Papua New Guinea, Paraguay, Peru, Philippines, Pitcairn, Henderson, Ducie And Oeno Islands, Poland, Portugal, Puerto Rico, Qatar, Réunion, Romania, Russia, Rwanda, Saint Barthélemy, Saint Helena, Saint Pierre And Miquelon, Saint Vincent, Samoa, San Marino, São Tomé And Principe, Saudi Arabia, Scotland, Senegal, Serbia, Seychelles, Sierra Leone, Singapore, Sint Maarten, Slovakia, Slovenia, Solomon Islands, Somalia, South Africa, South Georgia And South Sandwich Islands, South Korea, South Sudan, Spain, Sri Lanka, St Kitts And Nevis, St Lucia, Sudan, Suriname, Svalbard And Jan Mayen, Sweden, Switzerland, Syria, Taiwan, Tajikistan, Tanzania, Thailand, The Bahamas, The Gambia, Throughout England And Wales, Togo, Tokelau, Tonga, Trinidad And Tobago, Tunisia, Turkey, Turkmenistan, Turks And Caicos Islands, Tuvalu, Uganda, Ukraine, United Arab Emirates, United States, United States Virgin Islands, Uruguay, Uzbekistan, Vanuatu, Venezuela, Vietnam, Wallis And Futuna, Yemen, Zambia, Zimbabwe,

Who it helps

Children/Young People
Other Charities Or Voluntary Bodies
Other Defined Groups
People With Disabilities

Who works here?

25 employees
55 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	£184,290
Garfield Weston Foundation	£30,000
City Bridge Trust	£17,697
BBC Children in Need	£13,166
DCMS	£10,000

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - Supporting the leukodystrophy community post-COVID
£174,290	01/08/2022	This funding will support Alex The Leukodystrophy Charity (ATLC) to develop and implement new projects identified as a priority by their beneficiaries sharing latest information advice and guidance ....more This funding will support Alex The Leukodystrophy Charity (ATLC) to develop and implement new projects identified as a priority by their beneficiaries sharing latest information advice and guidance and enhancing the wellbeing of the genetic leukodystrophy community. ATLC provides support and information to people affected by a genetic leukodystrophy. Leukodystrophies are a group of rare progressive metabolic genetic diseases that affect the brain spinal cord and often the peripheral nerves. The funding will enable more patients families and carers to access vital support and information connect patients and families to others living with similar disorders raise awareness and improve public and professional education through events and campaigns and help to advance medical research to find better treatments enable early diagnosis and increase life expectancy.
Garfield Weston Foundation - Multi-Year Grant (2 Years) award
£15,000	18/03/2022	Expanding Beneficiary Support and Engagement Activities
Garfield Weston Foundation - Multi-Year Grant (2 Years) award
£15,000	09/04/2021	Expanding Beneficiary Support and Engagement Activities
DCMS - Coronavirus Community Support Fund
£10,000	23/07/2020	"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."
BBC Children in Need - Grant to Alex, The Leukodystrophy Charity
£3,372	17/06/2020 6	COVID19 - This grant is for funds to support children with Leukodystrophy who are impacted by the Covid-19 pandemic. Support will improve relationships and provide opportunities to have fun.
City Bridge Trust - Grant to Alex, The Leukodystrophy Charity
£17,697	08/05/2020	A grant of £17,697 to fund the essential and urgent costs outlined in the application, so that the organisation can carry on providing support to Londoners.
National Lottery Community Fund - Community Weekend 2020
£10,000	05/02/2020 9	The funding will be used to enable individuals and families living with severe degenerative disabilities to attend a series of peer support events, creating friendships and providing respite.
BBC Children in Need - Grant to Alex, The Leukodystrophy Charity
£9,794	19/11/2019 12	This project is a residential weekend for children with Leukodystrophy and their siblings. The aim of the project is to build positive relationships, build confidence and provide opportunities to ....more This project is a residential weekend for children with Leukodystrophy and their siblings. The aim of the project is to build positive relationships, build confidence and provide opportunities to have fun.
Garfield Weston Foundation - Main Grants award
£10,000	16/05/2018	Core Costs
National Lottery Community Fund - ALD Life Community Weekend
£9,000	04/05/2018 12	This project will bring together a community of people living with Adrenoleukodystrophy (ALD) to talk about the condition and learn about its long-term effects on people.
Lloyds Bank Foundation - Grant to ALD Life
£14,850	07/12/2017 24	The funding will support a Monitoring and Evaluation Officer to develop and implement an evidence based impact measurement framework.

Show more rows

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (12)

Current Trustees appointed

Gender Split

Based on 11/12 persons

Age Range of Trustees: 21-67

DR GAVIN METCALF Appointed: 2021, Occupation: Clinical Research Scientist

DR GEMMA BRIDGE Appointed: 2018, Occupation: Senior Strategy Advisor

DR JOHN LIVINGSTON Appointed: 2022, Occupation: Consultant Paediatric Neurologist

EMMA JANE HADFIELD-HUDSON Appointed: 2023, Occupation: Research Inclusion Manager

GIL SARIG Appointed: 2024, Occupation: It Director, Other trusteeship: MILA'S FOUNDATION,

IRAJ IDAFAR Appointed: 2022, Occupation: Accountant

KAREN ELIZABETH AMBER Appointed: 2023, Occupation: Registered Operating Department Practitioner Nhs

LINDA CHRISTINE MILNE Appointed: 2015, Occupation: Accountant

NICK JAMES LEOPOLD SHIROI Appointed: 2024, Occupation: Consultant

OLIVIA BOSTOCK Appointed: 2020, Occupation: Student

THEA WATKINS (Chair) Appointed: 2019, Occupation: Business Executive

TULSI SANDYS-WINSCH Appointed: 2023, Occupation: Student

Legal constitution

Charitable company registered in England & Wales on 23/09/2004, number: 1106008
Registered at Companies House on 01/06/2004, number: 05142341

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Complaints handling
Conflicting interests
Paying staff
Risk management
Safeguarding vulnerable beneficiaries
Volunteer management

Filing Record

18 returns made; AR14: 14 days late, AR06: 16 days late,

Main office

Alex, The Leukodystrophy Charity
45 Peckham High Street
LONDON
SE15 5EB

Objectives

1. The relief of sickness of people with leukodystrophy (also known as Inherited White Matter Disorders) and their parents and carers;2 To promote medical research into leukodystrophy and the publication of useful results of such research for the benefit of the public; and3 To advance the education of the public in leukodystrophy.

Defined Area of Benefit:

NOT DEFINED. IN PRACTICE WORLDWIDE

Data Sources