Fighting Leukodystrophies
The project
Leukodystrophies are a group of some twenty rare genetic disorders that destroy the central nervous system (brain and spinal cord) of children and adults by affecting myelin, a white substance enveloping the nerves. In the case of a leukodystrophy, the myelin no longer ensures the proper transmission of nerve messages. The European Leukodystrophies Association (ELA) is fighting these disorders in several ways: by supporting affected families via RAIL (“Leukodystrophy Help and Information Network”, a leukodystrophy help and information network), by increasing public awareness – notably via sports events – and by developing its action globally in order to participate in research efforts.
La Fondation Akuo soutient ELA : Recherche et événement caritatif
The Akuo Foundation provided twofold support to ELA by funding research into myelin disorders carried out by the latter and by financing the organization of a charity ski race, “Designers Ski Race for ELA”, the funds collected through inscriptions for the race being directly donated to the ELA association.
For the last 32 years
ELA has been deploying its actions to beat Leukodystrophies
More than 900
members