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
Bluebird Bio ALD Gene Therapy Update
Update from Bluebird Bio regarding their ALD Gene Therapy Clinical Trial In August 2021, Bluebird Bio announced that they planned to discontinue their operations in Europe. They announced that “they received a report of myelodysplastic syndrome (MDS) in a patient treated with elivaldogene autotemcel (eli-cel, or Lenti-D™), their investigational gene therapy for early cerebral adrenoleukodystrophy (cALD). The U.S. Food and Drug Administration (FDA) has put the clinical studies on ALD on hold in order to independently evaluate the benefit/risk of Lenti-D™”.
Are you a professional seeking support for a patient or client with leukodystrophy? We’re here to help.