The history of ELA
ELA, a family association
1992: the year ELA, an association of families ready to move mountains, ready to do anything to beat leukodystrophies, was created! The first meeting took place in a hospital corridor, with Guy Alba and Pascal Prin, two fathers of children with leukodystrophy. Alongside Cathy Schorderet and Raymond Cordary, driven by the same desire to fight against the disease that was affecting their children, they founded the European Leukodystrophy Association.
Its constituent general meeting was held on 15 February 1992 at the headquarters of Le Républicain Lorrain in Metz. The board of directors was then composed of 23 members, all of whom were parents affected by leukodystrophies. The governance would remain the same for 30 years: an association of families for families, with the clear objectives of funding medical research, supporting families, raising public awareness and developing its action at an international level.
In 2022, ELA has 900 members and many partners and friends!
Key dates for ELA
• Creation of ELA with clear objectives: to finance medical research, to support families, to raise public awareness and to develop its action at international level.
• Identification of the gene responsible for adrenoleukodystrophy.
• “I run, you sponsor, he lives”: first event for schools, which will become known as “Mets tes baskets et bats la maladie” (“Wear your trainers and beat disease”).
• Organisation of the first weekend of rest and relaxation for families at Center Parcs in Sologne.
• ELA recognised as a public utility : after only four years of existence, the ELA association has been granted the Recognition of Public Utility, undeniable proof of the quality of its work.
• Creation of ELA Belgium.
• Zinédine Zidane joins the ELA team: extremely touched by ELA’s fight, he gets involved and brings the association to the forefront.
• Creation of ELA Switzerland.
• Création of ELA Spain.
• Creation of the ELA Research Foundation. François-Henri Pinault, Franck Riboud, Florent Pagny and Zinédine Zidane join the Supervisory Board.
• Launch of the first ELA Dictation : “Pour toi, Pour Moi” (“For you, for me”) by Philippe Claudel.
• Launch of “Stades en fête” in Rennes.
• The Evian Masters alongside ELA.
• Creation of ELA Luxembourg.
• “Les Stars se dépassent pour ELA” : a charity show concept in prime time on TF1.
• Publication by Prof. Patrick Aubourg and Dr. Nathalie Cartier on the first results of a gene therapy trial on adrenoleukodystrophy supported by ELA. An innovation that opens up prospects for the treatment of leukodystrophies but also for other diseases.
• Creation of ELA Italy.
• Launch of the first “Wear your trainers and beat disease” campaign at work – The operation “1 step = 1 euro cent” during the working day is an immediate and overwhelming success with employees.
• ELA celebrates its 20th anniversary by gathering its young ambassadors and sponsors at Disneyland Paris and by creating ELA Indian Ocean.
• Creation of ELA Germany.
• Augusto Odone passes away, a pioneer parent in the fight against adrenoleukodystrophy.
• ELA and MedDay launch an international clinical trial to test a molecule for the treatment of an adult form of leukodystrophy. The trial is being launched simultaneously in Germany, France and Spain.
• Creation of ELA International: Based in Luxembourg, ELA International was created to federate all ELA structures (Germany, Belgium, Spain, France, Italy, Luxembourg, Switzerland, Indian Ocean) and to develop research by bringing together researchers from around the world.
• The “Wear your trainers” campaign for the general public. After schools and companies, it is now the turn of the general public to get involved in the fight against leukodystrophies.
• ELA back on TV with the new spot in which Zidane coaches researchers. In this spot, our godfather plays a coach who motivates a team of real researchers. It is broadcast on many television channels and in cinemas.
• ELA’s innovates in fundraising with the launch of an excellent product to reach major donors in France and internationally: the crystal foot, Zidane’s Crystalfoot.
• www.leuconnect.com: The international platform is launched to create patient cohorts and promote clinical studies in the field of leukodystrophies by involving several countries.
• ELA takes advantage of International Rare Disease Day and makes this day a key event to shed a light on leukodystrophies and to provide updates about the progress of research.
• ELA develops its “Mets tes baskets” (“Wear your trainers”) app. It allows connected challenges to be organised at school, in companies or as part of public operations.
• Launch of the first epidemiological studies on the Leuconnect platform
• Marketing authorisation for gene therapy for the treatment of cerebral adrenoleukodytrophy.
• First virtual Family-Researchers Colloquium with an international dimension.
• First edition of the “Wear your trainers and beat disease at work” International Day organised by all ELA structures.
• Exceptional auction “The Heart of the Stars beats for ELA” in partnership with Christie’s