We are Alex,
The Leukodystrophy Charity (Alex TLC)
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.
Living with a leukodystrophy can be challenging, but help is available.
Find out how our services can help you cope.
Our award-winning charity shop business helps raise vital funds and awareness, as well as providing volunteering opportunities and jobs for local people.
Our online forum brings people coping with leukodystrophy together to support each other, whether they are caring for a loved one or coping with their own condition
SwanBio Therapeutics gene therapy for AMN
Opening first clinical study to treat patients The FDA have cleared the Investigational New Drug application for SBT101, SwanBio Therapeutics gene therapy candidate for AMN. This means that they are able to proceed towards opening their first clinical study to treat patients with AMN with SBT101 at sites in the US.
Are you a professional seeking support for a patient or client with leukodystrophy? We’re here to help.