About Alex TLC
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.
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.
What we do?
• Provide practical support, advice and information to patients and families with a genetic leukodystrophy
• 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