Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information to people affected by a genetic leukodystrophy.
Established in 2004 as ALD Life, we are an internationally recognised centre of excellence for those affected by adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN).
There are around 50 different known types of leukodystrophy, including some so rare they only affect one or two individuals. The charity changed its name in 2019 to become the only charity in the UK that provides support for all those with a genetic leukodystrophy.
Alex, The Leukodystrophy Charity, or Alex TLC, was set up by Sara Hunt, a single mum of two sons diagnosed with adrenoleukodystrophy (ALD), the most common of the leukodystrophies, in 2001. Following this most devastating of diagnoses, Sara decided that the only way to deal with her family’s new situation, was to be as positive as possible and do everything in her power to save her boys. Determined not to let ALD defeat their sense of family, she spent the next 12 years making the best of their new “normal”.
Nevertheless, the inevitable was not to be escaped and she lost her eldest son, Alex in December 2012 – you can read his story here.
What is a Leukodystrophy?
Leukodystrophies are genetic disorders that mainly affect the white matter of the central nervous system (i.e. the brain or spinal cord). Most 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 can sadly be terminal.
- Enable more patients, families and carers to access vital support and information
- Connect patients and families to others living with similar disorders
- Raise awareness and improve public and professional education through events and campaigns
- Advance medical research to find better treatments, enable early diagnosis and increase life expectancy.