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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

Donate to our Community Weekend Appeal

People affected by leukodystrophy rely on these events to connect with others who understand, learn from experts about symptom management and research, and create memories that last long after the weekend ends.

Your support is crucial to ensure we can continue to host these vital events; please donate if you can.

Donate now

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

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

02nd April 2026

Online Community Meeting

Our next online meeting will be taking place on Thursday 23rd April 11:30-13:00 (BST – UK time).

02nd April 2026

Upcoming specific group meetings

We have planned a range of different group specific meetings over the next few months, including for parents of affected children and affected men.

30th March 2026

Charity Impact Survey 2026

Please complete our Impact Survey 2026 and share your feedback. For anyone who has a connection with Alex TLC through their/the person they care for leukodystrophy.

26th March 2026

News Round-Up

We have sent out the March edition of our monthly news round-up. This month we will be sharing about events we’ve been attending, your chance to have your say on supporting us and Ask our Community.

24th March 2026

Ionis community statement: zilganersen update

The U.S. Food and Drug Administration (FDA) has accepted Ionis New Drug Application (NDA) for zilganersen, the investigational treatment for Alexander Disease for Priority Review.