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About Us

Who we are

Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information to people affected by leukodystrophy.

Leukodystrophies are genetic disorders that mainly affect the white matter of the central nervous system (i.e. the brain or spinal cord). There are more than 100 different known types of  leukodystrophy, including some so rare they only affect one or two individuals.

Established in 2004 we are an internationally recognised centre of excellence and the only UK charity providing support and information to people affected by any of the leukodystrophy conditions worldwide.

How the charity began

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 their story here.

Our aims

We have four key aims:

  • 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

Read more about Alex TLC – what we do, how we do it, and our amazing team of staff, trustees and medical advisors.

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