2 children suffering from adrenoleukodystrophy saved thanks to the ELA A...(imony of Guy Alba founder and president ...),Health

I met Pr. Patrick Aubourg for the first time in 1991, when he diagnosed my 5 year-old son with adrenoleukodystrophy. I knew precisely the damages caused by this horrible disease (loss of motor function, of vision, speech, hearing, memory...) because they were destroying my nephew, 5 years older than my son, prefiguring what will happen to my little boy. Although petrified by this astounding news, it seemed nevertheless inconceivable to passively wait for the worst to come. I had long conversations with Patrick Aubourg who encouraged me to create a patient organization and accepted to chair its scientific committee. This is how ELA was born in 1992.

17 years later, the present victory over adrenoleukodystrophy bears the marks of all these fighting years, pains, losses, but also of numerous moments of solidarity and happiness. This victory against the disease is due first and foremost to the great research team lead by Pr. Patrick Aubourg and Dr. Nathalie Cartier. We also owe this victory to the tenacity of the highly committed ELA families who held on during all this time. We are furthermore indebted to the thousands of school children involved each year for ELA, to all our donors, all our partners, and if there was only a single one to name, to Zinedine Zidane, given his personal level of involvement and care.

Thanks to him and to them, ELA was able to fund ALD research at both national and European levels, but in the US as well, globally in a quite exceptional manner (7 million Euros invested so far), and to continuously support Pr. Aubourg's team since 1992.

All ELA families were impatiently waiting for this major breakthrough even those who do not expect anything from this discovery because the disease has already taken everything away from them. Today we are even prouder of this
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