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. Leukodystrophies are rare genetic disorders primarily affecting the white matter of the central nervous system (i.e., the brain or spinal cord). They affect males and females of all ages and backgrounds, most notably children. 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 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.
