Alex, The Leukodystrophy Charity

Charity number: 1106008
Charity reporting is up to date (on time)

Charity overview

Activities - how the charity spends its money

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.

Income and expenditure

Data for financial year ending 30 June 2024

Total income:
£965,218

Text alternative for this canvas graphic is in the data table below.
Donations and legacies £215.00k
Charitable activities £4.64k
Other trading activities £741.85k
Investments £3.63k
Other £100

Total expenditure:
£972,157

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Raising funds £698.96k
Charitable activities £273.20k
Other £0

£0 investments gains (losses)

Charitable expenditure

Charitable expenditure

Some charities generate all, or a substantial part, of their income from investments which may have been donated to the charity as endowment or set aside by the charity from its own resources in the past. Such investments usually take the form of stocks and shares but may include other assets, such as property, that are capable of generating income and/or capital growth.

In managing their spending and investments charities need to strike a balance between the needs of future and current beneficiaries. They also need to take account of spending commitments that may stretch over a number of future years. To do this, charities will normally adopt an investment strategy designed to generate both income and capital growth. To maximise returns trustees may commit to investment strategies for several years.

Investments can experience large swings in value so trustees may, in a particular year, decide to realise and spend part of their charity’s capital or to invest part of its income.

By clicking the investment gains checkbox the charitable spending bar is adjusted to take account of capital growth as well as income. This shows the balance the charity is striking, between spending on current beneficiaries and retaining resources for future beneficiaries.

Text alternative for this canvas graphic is in the data table below.
Raising funds and other expenditure £698.96k
Charitable expenditure £273.20k

People

27 Employee(s)

13 Trustee(s)

55 Volunteer(s)

Employees with total benefits over £60,000

No employees have total benefits over £60k for this charity

Fundraising

No information available

Trading

This charity does not have any trading subsidiaries.

Trustee payments

No trustees receive any remuneration, payments or benefits from the charity.

What, who, how, where

What the charity does:
  • Education/training
  • The Advancement Of Health Or Saving Of Lives
  • Disability
Who the charity helps:
  • Children/young People
  • People With Disabilities
  • Other Charities Or Voluntary Bodies
  • Other Defined Groups
How the charity helps:
  • Makes Grants To Individuals
  • Makes Grants To Organisations
  • Provides Services
  • Provides Advocacy/advice/information
  • Sponsors Or Undertakes Research
  • Other Charitable Activities
Where the charity operates:
  • Throughout England And Wales
  • 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
  • Easter Island
  • East Timor
  • 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
  • Northern Ireland
  • Northern Mariana Islands
  • North Korea
  • 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
  • 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

Governance

Registration history:
  • 23 September 2004: Standard registration
  • 28 October 2024: Funds received from 1000614 THE BRITISH TRUST FOR THE MYELIN PROJECT
Organisation type:
Charitable company
Other names:
  • ALD LIFE (Previous name)
Company number:
05142341 Open in new window
Gift aid:
Recognised by HMRC for gift aid
Other regulators:
No information available
Policies:
  • Bullying and harassment policy and procedures
  • Campaigns and political activity 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
  • 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
Land and property:
This charity does not own and/or lease land or property

Trustees

Trustees are the people responsible for controlling the work, management and administration of the charity on behalf of its beneficiaries. Generally trustees are treasurer, chair, board member etc. The trustees are responsible for keeping this list up to date and can do this by updating their details as they happen through the online service

13 Trustee(s)

Name Role Date of appointment Other trusteeships Reporting status of other trusteeships
Siriana Baldini Chair 06 September 2024
None on record
Thomas Dalton Trustee 12 May 2024
None on record
Stephanie Tan Trustee 05 May 2024
None on record
Nick James Leopold Shiroi Trustee 16 April 2024
None on record
Gil Sarig Trustee 04 January 2024
MILA'S FOUNDATION
Recently registered
Tulsi Sandys-Winsch Trustee 11 October 2023
None on record
Karen Elizabeth Amber Trustee 09 August 2023
None on record
Emma Jane Hadfield-Hudson Trustee 11 February 2023
None on record
Dr John Livingston Trustee 15 May 2022
None on record
Iraj Idafar Trustee 06 February 2022
None on record
Dr Gavin Metcalf Trustee 22 March 2021
None on record
Olivia Bostock Trustee 05 February 2020
None on record
LINDA CHRISTINE MILNE Trustee 16 January 2015
None on record

Financial history

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Financial period end date

Income / Expenditure 30/06/2020 30/06/2021 30/06/2022 30/06/2023 30/06/2024
Total gross income £776.43k £731.98k £892.30k £949.23k £965.22k
Total expenditure £597.50k £707.11k £871.86k £981.81k £972.16k
Income from government contracts N/A N/A N/A N/A N/A
Income from government grants £160.91k £147.24k £56.29k £2.59k N/A
Income - Donations and legacies £214.34k £249.72k £185.72k £247.57k £215.00k
Income - Other trading activities £560.08k £482.24k £702.60k £697.73k £741.85k
Income - Charitable activities £0 £0 £0 £2.29k £4.64k
Income - Endowments £0 £0 £0 £0 £0
Income - Investment £134 £23 £57 £1.54k £3.63k
Income - Other £1.87k £0 £3.92k £100 £100
Income - Legacies £0 £0 £0 £0 £0
Expenditure - Charitable activities £123.36k £191.94k £213.20k £319.63k £273.20k
Expenditure - Raising funds £474.14k £515.16k £658.66k £662.18k £698.96k
Expenditure - Governance £3.43k £3.10k £3.30k £10.91k £11.46k
Expenditure - Grants institution £0 £0 £0 £0 £0
Expenditure - Investment management £0 £0 £0 £0 £0
Expenditure - Other £0 £0 £0 £0 £0

Assets and liabilities

Definitions for assets and liabilities
Own use assets

These are assets, other than investments, which are held for more than 12 months and used to run and administer the charity such as buildings, offices, exhibits and fixtures and fittings.

Long term Investments

Investments are assets held by the charity with the sole aim of generating income which will be used for their charitable purposes such as deposit accounts, shares, rental property and unit trusts.
Investment assets are re-valued every year and included in the balance sheet at their current market value.
Long term investments are held for more than 12 months.

Other assets

These are assets held generally for less than 12 months such as cash and bank balances, debtors, investments to be sold within the coming year and trading stock.

Defined benefit pension scheme asset or liability

This is a surplus or deficit in any defined benefit pension scheme operated and represents a potential long-term asset or liability.

Total liabilities

These are all the amounts owed by the charity at the balance sheet date to third parties such as bills due but not yet paid, bank overdrafts and loans and mortgages.

" role="img"> Text alternative for this canvas graphic is in the data table below.
Asset / Liability 30/06/2020 30/06/2021 30/06/2022 30/06/2023 30/06/2024
Own use assets £24.36k £18.25k £43.40k £34.82k £32.72k
Long-term investments £0 £0 £0 £0 £0
Other assets £308.59k £363.22k £355.52k £337.63k £397.25k
Defined benefit pension scheme asset or liability £0 £0 £0 £0 £0
Total liabilities £52.22k £75.87k £72.88k £79.00k £143.45k

Accounts and annual returns

This table shows the charity's record of submitting annual returns, accounts and trustees' annual report (TAR) for the last five financial periods.
Title Reporting year Date received Received Download
Annual return 30 June 2024 04 February 2025 On Time
Accounts and TAR 30 June 2024 04 February 2025 On Time Download Open in new window
Annual return 30 June 2023 20 April 2024 On Time
Accounts and TAR 30 June 2023 20 April 2024 On Time Download Open in new window
Annual return 30 June 2022 26 April 2023 On Time
Accounts and TAR 30 June 2022 26 April 2023 On Time Download Open in new window
Annual return 30 June 2021 30 April 2022 On Time
Accounts and TAR 30 June 2021 30 April 2022 On Time Download Open in new window
Annual return 30 June 2020 30 March 2021 On Time
Accounts and TAR 30 June 2020 30 March 2021 On Time Download Open in new window
Submit annual return Open in new window

Governing document

Details of the type of governing document the charity has and when it was established.
It is not the full text of the charity's governing document.

MEMORANDUM AND ARTICLES INCORPORATED 01/06/2004 AS AMENDED BY SPECIAL RESOLUTION(S) DATED 26/08/2004 AS AMENDED BY SPECIAL RESOLUTION(S) DATED 16/07/2013 NOW ARTICLES ADOPTED BY SPECIAL RESOLUTION DATED 24/11/2014 as amended on 13 May 2019 as amended on 06 Aug 2023 as amended on 28 Dec 2023

Charitable objects

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; and 3 To advance the education of the public in leukodystrophy.

Area of benefit

The area the charity can operate in, as set out in its governing document.

NOT DEFINED. IN PRACTICE WORLDWIDE

Contact information

Address:
Alex
The Leukodystrophy Charity
45 Peckham High Street
LONDON
Phone:
02077014388
Email:
info@alextlc.org
Website:

www.alextlc.org Open in new window