28th October 2026
Online community meeting
Our next online meeting will be taking place on Tuesday 17th November 11:30-13:00 (GMT – UK time).
Helping to cope, helping to hope
Since 2004, Alex TLC has provided invaluable support and information to people affected by leukodystrophy – a group of rare, genetic disorders affecting the brain and spinal cord.
What began as a small support group in a single mum’s kitchen has since grown to become the only UK charity providing support and information to people affected by any of the leukodystrophy conditions worldwide.
There are more than 100 known types of leukodystrophy, including some so rare they affect only one or two individuals. However, many share common symptoms, and every type has a profound impact on the lives of those affected.
Several of our staff have first-hand experience of navigating life with leukodystrophy, and it is this personal connection that drives our work to improve prevention, diagnosis and treatment, while supporting those currently living with these cruel conditions.
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.
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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.
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.
We are constantly updating our news section with everything of interest to people affected by leukodystrophies. You will find information about our latest work, health and research news, updates for professionals, and more.
28th October 2026
Our next online meeting will be taking place on Tuesday 17th November 11:30-13:00 (GMT – UK time).
28th October 2026
We have created an understanding genetics page on our website with helpful information to understanding genetics and genetic conditions.
28th October 2026
This month we will be sharing about how to watch our Community Weekend presentations and view the wonderful event photos, our Teemill Christmas collection and our recently created understanding genetics page.
26th October 2026
Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
26th October 2026
Our electronic children’s book to support siblings of children diagnosed with CCALD is available in 4 languages.
23rd October 2026
Watch presentations from our Community Weekend 2026 on our YouTube channel.