Alex, The Leukodystrophy Charity
Leukodystrophy Awareness Month
Leukodystrophy Awareness Month is a time for everyone affected by a leukodystrophy to come together and raise awareness about these devastating rare conditions.
Story
Leukodystrophies are rare genetic disorders that mainly affect the white matter of the central nervous system (ie the brain or spinal cord). They affect people of all ages and backgrounds, most notably children. Leukodystrophies are usually degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow, and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.
There are over 100 known types of Leukodystrophy identified to date, including some so rare they only affect one or two individuals.
Alex TLC is the only charity in the UK that provides invaluable support for anyone with a leukodystrophy, their families, and carers.
Our aims
Enable more patients, families and carers to access vital support and information
Connect patients and families to others living with Leukodystrophy
Raise awareness and improve public and professional education through events and campaigns
Promote research to find better treatments, enable early diagnosis and increase life expectancy
"Alex TLC is always on hand 24/7. They can put you in touch with others, help with any questions you may have, and support you effectively because they really understand". Alex TLC Impact Report
Your support this Leukodystrophy Awareness Month will help us to make a huge difference to the lives of those affected.