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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

Help us hit 100

Those affected by leukodystrophy often face fear, isolation, and uncertainty. Right now, just 33 people give regularly to help us stand beside them. We want to grow that number to 100 regular donors, and we’re asking you to join us.

Regular donations cut down on administration costs and provide us with a reliable income to plan our future projects and services. Even a small amount each month really makes a big difference to our work.

Help us hit 100

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.

13th October 2025

Our new counsellor

We are pleased to introduce our new counsellor, Mel. Mel will be offering free counselling sessions to adult community members, including both affected individuals and family members.

07th October 2025

IWMD Diagnostic and Management Service survey

We’e worked with IWMD stands for Inherited White Matter Disorders, and is another term for leukodystrophy. You may hear the conditions referred to with either of these terms.
Leukodystrophies may be referred to as Inherited (or genetic) White Matter Disorders (IWMDs) meaning that the affected person has been born with a genetic abnormality that causes the disease. This may happen because a genetic abnormality occurs for the first time in the affected person at conception, or may have been inherited from one or both parents who “carry” the genetic abnormality.
Read more about IWMDs / leukodystrophies in our ‘What is leukodystrophy?’ page.

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clinicians to create a short survey to share your/your child’s experience of the Inherited

29th September 2025

Online community meeting

Our next online community meeting will be taking place on Tuesday 21st October 11:30-13:00 (BST). The meeting is open to anyone affected by leukodystrophy.

27th September 2025

Karen presenting at a leukodystrophy training course

Karen presented at the ‘Leukodystrophies: Novel perspectives on treatments and disease monitoring’ course in Paris held by Professor Fanny Mouchel and attended by many leukodystrophy specialists.