What is the ELA association?

Each year the ELA association organizes a campaign called “Put on your sneakers and beat the disease” in favor of the fight against leukodystrophiesgenetic diseases that reach 3 to 6 new children per week. The opportunity to organize the traditional ELA dictation in schools and collect donations to support medical research. But what is this association? When was it founded? By who ? Why ? Discovery.

What is the ELA association?

The ELA association is a French association created on February 15, 1992 by families of children with leukodystrophies. These are rare genetic diseases that destroy the myelin (the sheath of the nerves) of the nervous system. They gradually lead to the loss of mental and motor functions : sight, hearing, memory, locomotion… It is “an association of families for families, with the clear objectives of finance medical research, support families, raise public awareness and develop its action at the international level“ can we read on the association website. The association has several branches in other countries: ELA Belgium, ELA Spain, ELA Luxembourg, ELA Italy, ELA Germany, ELA Switzerland… In 2022, ELA will have 900 members. The Association has been recognized as being of public utility since 1996 and sponsored for more than 20 years by Zinédine Zidane.

What does ELA mean?

ELA stands forEuropean Leukodystrophy Associationin French “European Association against Leukodystrophies”.

Who is the founder of the ELA association?

ELA was founded by families. In 1992, “a first meeting takes place in a hospital corridor, that of Guy Alba and Pascal Princetwo fathers of children with leukodystrophy” tells the association. With Cathy Schorderet and Raymond Cordary, they founded the European Association against Leukodystrophies.

What is the Put on your sneakers campaign?

Each year, the association organizes a campaign called “Put on your sneakers” in schools for raise young people’s awareness of illness, solidarity, respect and disability. Since 1996, this campaign has been sponsored by the Ministry of National Education. It funds medical research. “Since the creation of the operation, the donations collected represent more than half of the sums allocated by ELA financing medical research and supporting families” indicates the association. It is organized around 3 highlights:

• the Dictée d’ELA, to raise awareness: the first day of the launch of the campaign
• Put on your sneakers and beat the disease, to take action and collect donations: during the national mobilization week or on a date of their choice, schools organize a sporting (cross country, tournament, etc.) or cultural (show, play, etc.) event, during which students symbolically lend their legs to sick children who cannot no longer use it. They must look for people around them who agree to reward their efforts for the benefit of ELA by making a donation or a promise of donation.
• the ELA Ambassador Prize, to reward a student at the end of the school year. Each establishment that participated in the operation can appoint its ambassador, the student who best embodies the values ​​of solidarity and sharing conveyed by the campaign. He receives a prize, a symbol of his commitment.

What is ELA dictation?

Every year, the association organizes the ELA Dictation. It marks the launch of the week “Put on your sneakers”. At each edition, a renowned author writes an unpublished text dedicated to the fight against leukodystrophy. In 2022, Mohamed Mbougar SarrPrix Goncourt 2021, lent himself to the game. This text is the subject of a dictation read by a teacher or by a personality in schools from primary to secondary throughout France.