Research, a fundamental mission of ELA

A mobilised scientific community

A few months after the creation of ELA, in December 1992, and the launch of its first call for proposals for research, the film “Lorenzo”, directed by George Miller, was released in the United States. It tells the story of Lorenzo, who has adrenoleukodystrophy (ALD) and whose parents Augusto and Michaela try to save him by speeding up research. In Washington, the meeting between the founders of ELA and Augusto Odone, Lorenzo’s father, was decisive. His ability to unite scientists when he himself was not one and to achieve a therapeutic goal was inspiring. We were going to follow him and, with him, we believed that everything was possible! The beginning of a powerful movement to make a rare disease more visible.

1993 was the year in which the gene responsible for adrenoleukodystrophy was identified and an unprecedented effort was made to mobilise the scientific community. Very little was known about leukodystrophies, but as early as 1993, Patrick Aubourg and Jean-Louis Mandel, the first researchers involved with ELA, jointly discovered the gene responsible for adrenoleukodystrophy: a scientific discovery that represented real hope in understanding the disease!

Today, thanks to research funded by ELA, we have discovered more than thirty leukodystrophies. This will to mobilise the scientific community will never let us down! This is the beginning of a long quest to advance research on these orphan diseases!

Since 1992, ELA has funded 571 research programmes for €48.8 million.