“Watches for ELA” is a charity sale of unique watches created by prestigious watchmaking houses to benefit ELA International, in the fight against rare diseases: leukodystrophies.
In 1992, with a few parents, we created ELA (Association Européenne contre les Leucodystrophies) in France. We were shocked by the sudden appearance in our homes of a barbaric, almost unknown disease, “leukodystrophy”. We knew that it could destroy the brain of a previously healthy child in a matter of months. It was genetically written and we were very afraid. But our determination to change the course of the disease soon got the better of us.
In early 2000, I was lucky enough to meet Zinédine Zidane, thanks to my childhood friend Michel Platini. That day, I understood that the ELA family was going to grow faster.
To move forward, the anonymity of leukodystrophies had to be lifted. Even if it wasn’t easy, we spoke out about our daily lives with the disease, with the help of Zinédine Zidane and all the other personalities he brought along in his wake.
We needed to bring patients together so that together we could be stronger. We did this by creating other ELA associations in Germany, Belgium, Spain, Italy, Luxembourg and Switzerland.
We had to identify the most promising research and the most effective researchers. We were able to do this thanks to a Scientific Council of world-renowned experts.
We needed more resources. To achieve this, we created ELA International in 2015.
We had to reinforce the interest and respect of patients in the choices and orientations of research. We created an International Ethics Committee to stay connected to our values and to reality.
In 1992, we knew of only a few leukodystrophies. Today, we have identified more than 40. At first, we watched helplessly as all the children deteriorated and died. Today, the first effective treatments have been developed, and some children can be cured. Over the past 32 years, ELA has played an active part in every stage of these discoveries.
Today, thanks to ELA, researchers are trying to add days to children’s lives, while ELA teams are doing their utmost to add life to days. What better way to work together?
There’s no greater reward: “to save a child is to save the world”
Guy Alba
Founder of ELA,
Chairman of the Board of ELA International
“You have to stand up to this disease, fight it, try to eliminate it, defeat it. It’s not easy, because everyday life is difficult, but you have to believe that one day it will all come to an end. Even if it’s hard for the families, we have to keep hoping. As for me, I’ll always be there for ELA.”
Zinédine Zidane, honorary member of ELA
