Alex, The Leukodystrophy Charity (Alex TLC) is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.
Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.
Like many other small charities, we have grown organically from an informal support group to the recognised voice for genetic leukodystrophy patients and their families. In order to support our core costs and to take away some of the burden of fundraising from our small cohort of supporters (usually affected themselves) we run a successful charity shop business comprising five shops in south east London.
We work with a strong ethos of mutual benefit for both our patients and their families and carers, and charity shop communities and have a strong set of values to which all staff and volunteers must adhere.
Our administration and charitable work team comprises three employees, two of whom are directly affected by genetic leukodystrophy, an accomplishment we are incredibly proud of.