About Alex TLC
About This Shop
Alex TLC is a trusted and experienced organisation offering support and information for all those affected by 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 is all about delivering high-quality support, advice, knowledge, and care for those affected by one of the genetic leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavor to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
We do this through a comprehensive and sensitive package of support, managed by real people with actual experience of the many aspects of living with a leukodystrophy.
Our information and services are reviewed regularly by our medical advisors, staff, and our Steering Group made up of beneficiaries representing the diversity of leukodystrophy as well as the many phases and characteristics of individual conditions.
We undertake various projects to improve the quality of, and access to, treatments for leukodystrophy through our collaborations with the NHS, specialist medical professionals and scientists, peer and umbrella organisations, and corporates with a common goal.
Not only are we a charity, but we are also a business, and our southeast London charity shop chain is an integral part of Alex TLC, providing employment and volunteering opportunities for the local community as well as much-needed high street awareness of these little-known conditions. These shops are our financial backbone and an important link for further income and awareness-raising opportunities: our corporate team-building activity has become a popular and sought-after event with businesses “taking over” our shops for the day to bring in the most money and compete with each other.