ELA International, hope is inevitably research
Who are we?
In 1992, Guy Alba, the parent of a child suffering from leukodystrophies, created the European Leukodystrophy Association: ELA, along with other families. In 1996, ELA was recognised as a public utility. In 2015, ELA International was created to extend the fight.
Leukodystrophies:disabling degenerative diseases
Leukodystrophies are degenerative diseases that affect 3 to 6 births per week in France and 20 to 40 births per week in Europe. They are genetic diseases that destroy the myelin (nerve sheath) of the nervous system, brain and spinal cord. When this sheath is damaged, the current no longer flows and nervous system messages are interrupted, which rapidly leads to the deterioration of all vital functions, resulting in extremely serious handicaps.
The Missions of ELA
To support families, ELA has set itself 4 missions:
• To inform and accompany families, to provide relief to them on a daily basis
• To finance medical research on leukodystrophies.
• To make an impact at an international level by creating branches to bring together as many families and patients as possible and to advance research.
• Raise public awareness to bring this rare disease out of the shadows and raise funds.
To bring relief to families, provide them with moments of respite, and enable children to share moments of happiness, ELA finances family support in addition to state aid (expenses for care, space planning, vehicle equipment, accessibility, leisure, respite) and organises an annual family/researcher meeting and weekend for all families at Center Parcs.
The development of research
Since its inception, ELA has funded 527 research programmes to the tune of €44.7 million, making it the leading private funder of leukodystrophy research.
ELA is currently present in 9 countries: Belgium – Germany – Spain – Italy – Japan – France – Luxembourg – Switzerland – Indian Ocean. All of these entities have the same mission and are committed to helping sick children by raising awareness among as many people as possible. To speed up medical research, ELA is developing an online platform: Leuconnect (in several languages) which and brings together patients in relevant cohorts for future clinical trials,making them actors in their own medical research
Raising public awareness
ELA has been continuously improving its visibility to raise awareness, collect donations and help fund medical research and family support programmes. Since its inception, ELA has been able to expand its reach thanks to the commitment of its loyal sponsors. Since 2000, ELA has benefited from the commitment of its emblematic sponsor: Zinédine Zidane. ELA can also count on committed sponsors: sportsmen and women, singers, actors, comedians, humorists, journalists, writers, animators, cartoonists, artists… and on committed partners from all walks of life (business, education, health, and so on). ELA also relies on business leaders and on an Advisory Board made up of qualified personalities.