ELA International, hope inevitably means research
Who is ELA?
In 1992, Guy Alba, the parent of a child suffering from leukodystrophy, founded the European Leukodystrophy Association (ELA) with other families. Since 1996, ELA has been recognised as a public charity. In 2015, ELA International was created to extend the fight.
Leukodystrophies: disabling degenerative diseases
Leukodystrophies are degenerative diseases that affect 3 to 6 births a week in France and 20 to 40 births a week in Europe. These 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 passes and nerve messages are interrupted, which rapidly leads to the deterioration of all vital functions, resulting in extremely serious handicaps.
To support families, ELA has set itself 4 missions:
• To inform and support families, to help them in their daily lives, and to provide them with moments of respite.
• To fund medical research into leukodystrophies.
• To develop its action at 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.
Support for families
To ease the burden on families, give them a break and enable children to share moments of happiness, ELA finances support for families in addition to State aid (expenditure on care, facilities, vehicle equipment, accessibility, leisure activities and respite) and organises a family/researcher meeting and a weekend for all families at Center Parcs every year.
Since its inception, ELA has funded 571 research programmes to the tune of €48.8 million, making it the leading private funder of research into leukodystrophies.
ELA is currently present in 7 countries: Germany – Belgium – Spain – Italy – France – Luxembourg – Switzerland. All of these countries share the same mission, working to raise awareness of the disease among as many people as possible. To speed up medical research, ELA is developing an online platform: Leuconnect (in several languages) which mobilises patients as actors in their own health, and brings them together in cohorts relevant to future clinical trials.
Raising public awareness
ELA has never ceased to develop its visibility in order to raise public awareness, collect donations and help fund medical research and family support programmes. Since its creation, ELA has been able to shine thanks to the commitment of loyal sponsors. Since 2000, ELA has benefited from the commitment of its emblematic patron: Zinédine Zidane. ELA can also count on committed sponsors: sportsmen and women, singers, actors, comedians, humorists, journalists, writers, presenters, cartoonists, artists, etc. and on committed partners from all walks of life (business, education, health, etc.). ELA also relies on business leaders and an Advisory Board made up of qualified personalities.