Finance Score: -4
Governance Score: 8
Support Score: 7
  • Low unrestricted reserves: -2
  • Positive trading contribution: +2;Reasonable growth: +1
  • Fundraising costs high: -5
  • 12+ Trustees: -1
  • Good trustee age range: +3
  • Dynamic board: +3
  • Gender balanced board: +3
  • Overall weighted support: +7
Overall GiG Score: 11 ?

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:

  • The charity has received backing from multiple prominent grant makers recently
  • More than half of total income was derived from trading and fees in the latest year
  • 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
  • The Board appears to be well diversified in terms of age and gender and dynamic in terms of composition

Regulatory & Governance issues to consider:

  • Why are there 13 trustees whereas the Charities Commission recommends a maximum of 12?
  • Over half the Board have joined recently

Financial issues to consider:

  • Unrestricted reserves appear to be dangerously low at the latest year end
  • Fundraising costs are extremely high relative to funds raised

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
30/06/23£949£982£-33£662£293£2342.92655
30/06/22£892£872£20£659£326£2513.52555
30/06/21£732£707£25£515£306£1823.12455
30/06/20£776£598£179£474£281£1262.52150
30/06/19£635£639£-4£507£102£480.92150
30/06/18£687£687£0£488£106£390.7200
30/06/17£571£595£-23£454£106£571.1180
30/06/16£635£581£54£435£129£250.5180
30/06/15£597£577£20£487£75£110.2220
30/06/14*£433£460£-28n/an/an/an/an/an/a
30/06/13£334£279£55n/an/an/an/an/an/a
30/06/12£280£283£-2n/an/an/an/an/an/a
30/06/11£193£194£-1n/an/an/an/an/an/a
30/06/10£144£146£-2n/an/an/an/an/an/a
30/06/09£136£142£-6n/an/an/an/an/an/a
30/06/08£91£84£7n/an/an/an/an/an/a
30/06/07£165£172£-7n/an/an/an/an/an/a
30/06/06*£130£97£33n/an/an/an/an/an/a
30/06/05£16£10£6n/an/an/an/an/an/a

Financial Ratios
Fundraising Costs/Relevant Income: 265%
Fundraising Costs/Total Spending: 67.4%
Highest pay band: Less than £60,000
Liabilities/Assets: 21%
Liabilities/Income: 8%
Unrestricted Funds/Total Funds: 80%
Reserves/Spending: 2.9 months
Net Current Assets/Spending: 3 months
Quick Ratio: 5.3
Asset Split ?
Balance Sheet History
Established: 20 years

www.alextlc.org

info@alextlc.org

02077014388

Charity Commission for England and WalesCompanies HouseFacebookInstagramX
UN SDGs
?
Listed activities
  • Disability
  • Education/Training
  • The Advancement Of Health Or Saving Of Lives
GiG Classification
  • Medical research
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 ....more
Who it helps
  • Children/Young People
  • Other Charities Or Voluntary Bodies
  • Other Defined Groups
  • People With Disabilities

Who supports them? ?

Donations from Grant Makers ?

We have details on the following 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
BBC Children in Need£18,372
City Bridge Trust£17,697
DCMS£10,000
Specific Donations
Amount When
Months
To be used for
BBC Children in Need - Grant to Alex, The Leukodystrophy Charity
£15,000 27/02/2023
12
A Community Weekend to bring together children with Leukodystrophy from across the UK, supporting them to build strong peer relationships and reduce isolation.
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 and enhancing the wellbeing of the genetic ....more
London Catalyst - Alex, The Leukodystrophy Charity - 1
£2,000 07/06/2022
Increasing capacity for research analysis (a project to optimise our position as the patient voice for all affected by a genetic leukodystrophy)
Garfield Weston Foundation - Multi-Year Grant (2 Years) award
£15,000 18/03/2022
24
Expanding Beneficiary Support and Engagement Activities
Garfield Weston Foundation - Multi-Year Grant (2 Years) award
£15,000 09/04/2021
24
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 operate, thereby reducing the burden on public ....more
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 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 (13)
Current Trustees appointed
Gender Split
Based on 11/13 persons

Age Range of Trustees: 22-68
  • DR GAVIN METCALF Appointed: 2021, Occupation: Clinical Research Scientist
  • 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
  • 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
  • SIRIANA BALDINI (Chair) Appointed: 2024, Occupation: Solicitor
  • STEPHANIE TAN Appointed: 2024, Occupation: Health Policy Consultant
  • THOMAS DALTON Appointed: 2024, Occupation: Onboarding Specialist
  • 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
  • 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
  • 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; AR14: 14 days late, AR06: 16 days late,
Recent reorganisation events:
  • Asset transfer in from THE BRITISH TRUST FOR THE MYELIN PROJECT on 28/10/2024
Main office

Alex
The Leukodystrophy Charity
45 Peckham High Street
LONDON

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

Charity Commission for England and Wales
360 Giving

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