Alex TLC

Who we are

Established in 2004, Alex TLC is an internationally recognised centre of excellence for those affected by Leukodystrophy. We are the only charity in the UK that provides invaluable support for anyone with a Leukodystrophy, their families, and carers.

Our aims

• Enable more patients, families and carers to access vital support and information
• Connect patients and families to others living with Leukodystrophy
• Raise awareness and improve public and professional education through events and campaigns
• Promote research to find better treatments, enable early diagnosis and increase life expectancy

What is a Leukodystrophy?

Leukodystrophies are rare genetic disorders that mainly affect the white matter of the central nervous system (ie the brain or spinal cord). They affect people of all ages and backgrounds, most notably children. Leukodystrophies are usually degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.

There are over 100 known types of leukodystrophy identified to date, including some so rare they only affect one or two individuals. 

Our culture and values

We are a small friendly team, dedicated to our vision of support and access to treatment for everyone living with leukodystrophy.

We believe the best solutions come together by working collaboratively with common goals and purpose underpinned by our values of:

- trust and respect
- accountability
- excellence and education
- mutual benefit

Equality, diversity and inclusion policy

Alex TLC is committed to opposing all forms of discrimination across all areas of our work and activities.

We conscientiously consider equality, diversity and inclusion at all stages of our activities and are proactive in ensuring our services can be accessed by all who need them.

Our Board, staff and volunteer teams reflect both the diversity of our leukodystrophy community and the UK population, ensuring we can approach our work from a range of relevant perspectives.