Established in 2004, Alex, The Leukodystrophy Charity (Alex TLC) was founded by a mother whose sons, Alex and Ayden, had both been diagnosed with leukodystrophy. She recognised the severe lack of information and support available to families in her position and wanted to make sure that no one had to face leukodystrophy alone.
In a relatively short amount of time, and with very limited resources, we have become an internationally recognised centre of excellence for anyone affected by leukodystrophy. We are the only charity in the UK that provides invaluable support for everyone with leukodystrophy, their families, and carers.
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.
Deposit payable by the fundraiser and minimum money to raise
£50 Registration Fee and £450 minimum sponsorship
