Helping to cope, helping to hope

For everyone affected by leukodystrophy

We are Alex, The Leukodystrophy Charity (Alex TLC)

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.

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

Free Wills Month

Writing a will is something that a lot of people don’t like to think about, but doing so is a good way to plan for the needs of your loved ones.

We’ve teamed up with FreeWills to give you the opportunity to create a will for free

 

Find out more

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

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

Latest news

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.