ELA Hope Story
ELA, a family association
1992: this is the date of creation of ELA, an association of families ready to move mountains, ready to do anything to defeat leukodystrophies! A first meeting takes place in a hospital corridor with Guy Alba and Pascal Prin, two fathers of children with leukodystrophy. With Cathy Schorderet and Raymond Cordary, led by the same will to fight against the disease that affects their children, they founded the European Leukodystrophies Association.
Its constitutive general assembly was held on 15 February 1992 at the headquarters of the Republican Lorrain in Metz. The board of directors is then composed of 23 members all parents concerned by leukodystrophies. The governance bias will remain the same for 30 years: an association of families for families, with clear objectives to fund medical research, support families, raise public awareness and develop its action at the international level.
In 2022, ELA has 900 members and many partners and friends!
Key dates of ELA
- Creation of ELA with clear objectives: fund medical research, support families, raise public awareness and develop its action internationally.
- Discovery of the gene responsible for the adrenoleukodystrophy which was a first hope for the families.
- “Lorenzo”: that film made the leukodystrophies known. When George Miller, the “Mad Max” director, took an interest in an unknown disease, it sensitized the general public to the severity of leukodystrophies.
- “Wear your trainers and beat disease”: it was the year of the first call for fund raising involving schools. The idea of a great civic operation was launched and it will meet a renewed success every year.
- State-approved association : after only 4 years of existence, the ELA association was state-approved, undeniable proof of the quality of their work.
- Zinédine Zidane: a heart-felt commitment. The champion with a big heart, deeply moved by ELA was really committed and propelled.
- ELA foundation: research development.
- First gene therapy trial on a leukodystrophy: a milestone year for ELA families who are dicovering a promising medical breakthrough. Professor Patrick Aubourg and Doctor Nathalie Cartier publish the results of an adrenoleukodystrophy gene therapy trial and of other more frequent diseases.
- First international clinical test: ELA and MEDDAY launch the MD 1003 trial to test the benefits of a molecule in the treatment of an adult form of leukodystrophy. This trial is launched simultaneously in Germany, France and Spain.
- ELA International was created: created in 2015, ELA International seemed evident. Headed by Guy Alba (founder), they aim at developing national associations by bringing them help and support, by pooling the means and tools and sharing the good practices. It will above all open new ways of research while worrying about the comfort of patients. In 2015, Pascal Prin (founder) became President of ELA France.
- Symposium: world experts on leukodystrophies were reunited by ELA International to advance research. ELA international reunited some thirty world experts (Germany, England ,Spain, The USA, France, Italy, The Netherlands) ofvarious fields (biologists, physicians, chemists, industrials) to think together of therapeutic options for the management of leucodystrophies. The themes: • Role of innate immunity in brain dysfunction, and known treatments. • Knowledge sharing. • Consideration of possible clinical trials in patients suffering from leucodystrophies.
- Crystalfoot, a numbered limited series of 100 crystal feet: ELA interationally launched Crystalfoot, an exceptional work to fight against leukodystrophies. This collector numbered limited series of Zinédine Zidane’s foot made of crystal was manufactured by the prestigious Maison Baccarat with the molded print of his left foot. For Zinédine Zidane, “When we are motivated, when we give everything, we can win. All that matters is determination.” With this crystal foot, great donators join the prestigious club of Crystalfoot.
- Symposium: world experts on leukodystrophies were reunited by ELA International to advance research. ELA international brought together more than twenty experts of leukodystrophies from all over the world (England, France, Germany, Italy, Spain, the Netherlands, the United States etc.) around new themes. The testimony of some families has enriched the discussions and the exchanges of experts thus reinforcing the will of ELA International to move them together towards new clinical trials and new therapies. The themes: • Newborn screening for leukodystrophies. • Women with X-linked adrenoleukodystrophy. • New therapies for leukodystrophies.
- Creation of the application “Mets tes baskets”: ELA developed its application “Mets tes baskets”. It allows to organize connected challenges at school, at work or for the general public. Through the exceptional health situation, ELA chose to innovate and transformed the “Wear your trainers and beat disease at work” operation to a connected challenge thanks to the “Mets tes baskets” application. It was a successful gamble: almost all the partners took part to the connected challenge for ELA. Launch of the first epidemiological studies on the Leuconnect platform By making recruitment and getting access to clinical studies easier, the platform allows to gather a community of available and motivated patients. The first studies focus on a better knowledge of the natural history of the disease and life quality.
- New progresses on research: • Market authorization of the gene therapy treatment for cerebral adrenoleukodystrophy. • First online Families/Researchers meeting with an international dimension. This online meeting translated in 5 languages is a first in ELA history. It gathered 15 different nationalities, which proved the universal nature of the disease and the families’ expectations throughout the world. About twenty researchers also participated and made a point on the progress of their work.
- “First international day “Wear your trainers and beat disease at work”: For the first time, the branches of ELA mobilize and gather their workers around the fight against leukodystrophies. In Belgium, Spain, France, Luxembourg and Switzerland, hundreds of companies counted their steps on June 9th to lead medical research further.
- Exceptional charity auction: “The Stars’s Hearts beat for ELA” with Christie’s. Thanks to the gracious assistance of Christie’s, the support of numerous patrons of the association, notably Zinédine Zidane and Florent Pagny, and thefriendship and exceptional involvement of François-Henri Pinault and Salma Hayek, ELA could gather 18 magnificent objects having belonged auctioned for the benefit of the Association.
- ELA is 30!: the association commemorated 30 years of fight, surrounded by families, partners and supporting personalities. The representatives of European branches gathered for a retrospective night during the General Assembly weekend of ELA France in Paris.