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Helping to cope, helping to hope

For everyone affected by leukodystrophy

We are Alex, The Leukodystrophy Charity (Alex TLC)

Established in 2004, Alex TLC provides invaluable support and information to people affected by leukodystrophy.

Formerly ALD Life, for people affected by adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN), we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.

There are more than 100 different known types of leukodystrophy, including some so rare they only affect one or two individuals. We are the only charity in the UK that provides support and information to people affected by any of the leukodystrophy conditions worldwide.

About Us

What is leukodystrophy?

Leukodystrophies are genetic disorders primarily affecting the white matter of the central nervous system (ie. the brain or spinal cord). The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In some cases, they may be life limiting. These conditions affect males and females of all ages and ethnic backgrounds, most notably children.

Learn more about leukodystrophy

Making a difference to our community

We are proud of the information and support we provide to our community members.

Over a year period we provide:

  • one to one support to over 380 individuals and family members
  • over 200 counselling sessions to our community members
  • monthly online community meetings to over 75 community members

We hold an annual Community Weekend and our 2024 event was attended by over 180 community members and professionals.

Our website is an important resource for individuals affected by leukodystrophy and professionals. Over a year period we have over 49,900 visits to our website, with our condition pages being the most popular pages receiving over 17,500 visits.

Newly diagnosed

Have you or a family member been diagnosed with a leukodystrophy?

We understand the information you have received may be new and confusing, and it may be difficult to know where to go for further advice and information.

Support for newly diagnosed

Information and support

NHS England Inherited White Matter Disorders (Leukodystrophy) Patient Service and Registry

The new NHS England IWMD Diagnostic and Management Service is for all ages. It strives to implement national standards of care for patients with an IWMD (leukodystrophy) and improve the NHS’s understanding of care for these conditions.

We are the patient organisation representative for the service and registry. We are working alongside NHS professionals, including consultants and nurses, to support the development of these services. We attend clinics to provide information and support to individuals and family members.

Further information

Light Up the Sky

This festive season, join us to Light Up the Sky – a campaign to raise the funds we need to sustain and grow our support services.

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Get Involved

You can help us to raise vital funds and increase awareness of leukodystrophies.

The majority of people aren’t aware of these rare diseases and their impact on individuals and their families. With your help, however small, we can make a real difference.

These pages are packed full of ideas and inspiration for the various ways you and/or your organisation can get involved and lend your support.

Discover how you can get involved today.

Get Involved

Ways you can support us

Latest News

We are constantly updating our news section with everything of interest to people affected by leukodystrophies.

You’ll find information about our latest work, health and research news, updates for professionals, and more.

19th December 2025

Research Summary: December 2025

Our Research Summary for December is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.

15th December 2025

Support Services Impact Report 2025

Our Support Services Impact Report 2025 is available to view.

This impact report was based on the findings from our Support Services Impact Survey which gathered the views of those who have accessed support within the charity.

10th December 2025

Responses to our community ask

We had some great ideas for over the festive period. These included festive gifts for symptomatic children and fun inclusive activities for the whole family to share.