Alex TLC (The Leukodystrophy Charity)

ALD Life is a voluntary, non-profit patient support group and registered charity working with patients and families with adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN) – a rare genetic condition affecting mainly boys aged 4 to 10. Their main goals are to provide support to patients and families affected by the disorder, provide practical information, and support further medical research towards finding better treatment and/or a cure. Adrenoleukodystrophy is an X-linked recessive genetic disorder caused by an abnormality in the ABCD1 gene on the X chromosome. This condition affects the white matter of the nervous system and the adrenal cortex. Some affected individuals have adrenal insufficiency, which means that reduced amounts of certain hormones such as adrenaline and cortisol are produced, leading to abnormalities in blood pressure, heart rate, sexual development and reproduction. Some of those affected experience serious neurological problems that can affect mental function and lead to disability and reduced life span. This condition has been categorized into six types based on symptoms and age of onset: childhood cerebral ALD, adolescent cerebral ALD, adrenomyeloneuropathy, adult cerebral ALD, adrenal insufficiency only and ALD that occurs in females.