Alex, The Leukodystrophy Charity
Alex TLC Community Weekend 2020
The Alex TLC Community Weekend Conference brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
Donations open 12:00 PM, 3 December 2019 to 12:00 PM, 10 December 2019
Registered Charity in England and Wales (1106008)
“The Community Weekend is an excellent source of support and information.”
— Adult leukodsytrophy sufferer at 2018 event
“It never ceases to amaze me that we … manage to have such fun amidst such dire situations. The event was very informative but also good fun.”
— Mother of a child lost to leukodystrophy at 2018 event
“This weekend has been invaluable to our family, it’s been so helpful meeting other families affected and hearing from all the Doctors and experts. It’s the most relaxed we’ve felt in months!”
— Family with newly diagnosed son at 2018 event
Situation
Leukodystrophies are rare genetic disorders affecting the white matter of the central nervous system (i.e. the brain or spinal cord). The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In some cases, they may cause death. They are often misdiagnosed and are poorly understood within the medical community leaving patients feeling isolated and unable to cope.
Solution
The Alex TLC Community Weekend brings together patients and families with a leukodystrophy to talk openly about their condition, develop effective coping mechanisms and optimise condition management through targeted workshops and activities designed to facilitate formation of supportive and meaningful, lasting relationships. Also in attendance are healthcare professionals and scientists who hear directly from those affected, presenting a rare opportunity for major stakeholders to progress ideas.
