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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

Give Up to Give Back in 2026

Looking for a new challenge? Planning to lead a healthier lifestyle? Just want to do something for charity? If so, Alex TLC’s Give Up to Give Back campaign could be just the thing for you!

Find out more

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 February 2026

MLD newborn screening articles

Several news articles have been published which highlight the importance of newborn screening for MLD from a family’s perspective and in a professional’s opinion.

11th February 2026

Bookings open for our Community Weekend 2026

We are pleased to announce that bookings for our Community Weekend 2026 are now open. The event will be taking place from Friday 9th to Sunday 11th October at The Manchester Deansgate Hotel.

10th February 2026

MLD Newborn Screening decision

We are saddened to share the news that the UK National Screening Committee have made the decision not to add Metachromatic Leukodystrophy (MLD) to the newborn screening programme in the UK.

05th February 2026

Attending the SHCA quarterly meeting

Our Director of Support, Karen, is attended the Specialised Healthcare Alliance (SHCA) quarterly meeting in Millbank House on the Parliamentary Estate.