ALD Life is a patient support group for families affected by adrenoleukodystrophy (ALD) adrenomyeloneuropathy (AMN) - rare, inherited and incurable metabolic disorders caused by a faulty ABCD1 gene.
ALD Life is a charity dedicated to promoting awareness, research and prevention of Adrenoleukodystrophy (ALD). This is a rare and terminal genetic brain disorder causing devastating and chronic disabilities in young boys. It affects apparently normal and healthy young boys within months causing them to become wheelchair bound, incontinent, blind, unable to talk or swallow and fed by tube. There is no cure and preventative treatment using bone marrow transplant is only available to those known to carry the gene.
ALD Life aims to support and advise affected families and individuals and provide opportunities to network and support and advise each other. This is done through our website, newsletters, contact lists and annual get togethers. We also bring together researchers, scientists and medical professionals to update those affected on current innovations into the disorder.
ALD Life aims to:
- To fund medical research projects looking into finding better treatment or a cure
- To provide emotional ands financial support and practical information and advice to patients and families.
- To raise awareness of Adrenoleukodystrophy to improve the quality of care and services from the health and social services as well as the public
Established: September 2004
Registered Charity Number: 1106008
Board members: 8
Full time staff: 15
Part time staff: 2
Phone number: 020 7701 2628
Address: 45 Peckham High Street London SE15 5EBView charity accounts on the Charity Commission website
ALD Life Community Get TogetherTo bring together families and individuals living with rare, inherited and incurable metab... More