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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

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

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.

12th December 2024

NHS Genomics Healthcare Summit 2024

On Thursday 12th December 2024 our CEO, Sara Hunt, attended the NHS Genomics Healthcare Summit 2024. The summit focused on the latest developments in NHS genomic medicine and their application in clinical care.

11th December 2024

Community Weekend 2024 presentations

We are pleased to share that the presentations from our Community Weekend 2024 are now available to view on our YouTube channel. We have created a playlist of all the recorded presentations from the event.

10th December 2024

What is AMN?

Adrenomyeloneuropathy (AMN) is a form of adrenoleukodystrophy that affects the spinal cord and body (peripheral nerves), resulting in symptoms like muscle weakness, difficulty walking, and bladder dysfunction.

09th December 2024

Online Community Meeting

Our next online community meeting is on Thursday 19th December 11:30-13:00 (GMT). These meetings are for everyone to attend, whether you are an affected individual, parent or family member.

09th December 2024

Our Community Ask for December

We’d like to hear from you about suggestions for coping at Christmas. We understand that Christmas can affect how people are feeling and have an impact on their mental health. This can be because of the demands of the festive period or because you have lost a loved one.