Alex TLC is a small charity that supports children and young people, and their families living with Adrenoleukodystrophy (ALD)and Adrenomyeloneuropathy (AMN).
These are conditions classed as Leukodystrophies, which are a group of rare genetic diseases that cause damage to the brain, spinal cord and often the peripheral nerves.
The charity runs a helpline and a support service including home visits to provide practical support, advice and information to families living with these conditions. Alex TLC also runs events to connect families and medical professionals, and provides financial support to help families cope with a rare disease.
Global’s Make Some Noise is proud to support the charity’s ‘Community Weekend’ project, bringing families living with Leukodystrophies together along with medical professionals for a weekend of learning and networking.
The Community Weekend provides opportunities for families to talk to and hear from experts about the latest developments in research and understanding of the conditions. Families get the chance to meet others with these conditions and are able to build important peer support networks.
Through this project, children, young people and their parents learn how to manage their condition better and find new sources of support and guidance.
With your help, we can support projects like this one and many more across the UK.