ELA International and Crystalfoot: funding research into leukodystrophies
“To take research into these rare diseases even further, I was looking for a new, strong, powerful, and ambitious idea. We have no choice but to be ambitious when faced with serious diseases. This idea came to me naturally; it was right there in front of me. We are fortunate to have Zinédine Zidane as the patron of ELA. With such an iconic figure, it became obvious to seize upon this magical foot that has enchanted millions of spectators with its prowess on the field.
I thought to myself that we had to make this foot a symbol and transform it into a work of art to leave a lasting impression. That’s how the idea for the crystal foot was born. To make it happen, we had to join forces. The first force is that of the sick children who fight on and teach us all lessons about life. Just look at them living without complaining, even though their daily lives are difficult and complicated, filled with suffering. Their parents, who care for them without faltering, also give us courage that is hard to imagine, to continue the fight.”
Guy Alba,
President of ELA International
Our missions
• Fund medical research on leukodystrophies
• Inform and support affected families
• Raise public awareness
• Develop its activities at the international level
Developing research, a priority for ELA International
ELA supports research in the field of leukodystrophies. To date, more than 586 research projects have been funded, for a total of €50.5 million.
ELA’s goal is to help French and international researchers better understand the mechanisms of the disease and its natural history, in particular through the discovery of assessment tools and biomarkers, and to help clinicians conduct clinical trials to combat leukodystrophies.
Since its inception, ELA has invited the international scientific community to submit research projects in the field of leukodystrophies through a call for proposals: clinical trials; preparation for clinical trials; preclinical studies specifically testing therapies; development of relevant animal or cellular models of human leukodystrophies; study of the mechanisms responsible for the disease in order to identify new therapeutic approaches; research on the prevention and repair of white matter lesions in humans or in animal models specific to leukodystrophies. ELA has organized three international scientific conferences bringing together leading specialists in leukodystrophies and myelin repair. These events have provided an opportunity to review the latest discoveries in the field and promote exchanges and collaborations between researchers and clinicians.
In order to keep families informed, ELA organizes an annual conference dedicated to patients and their families. At this event, leukodystrophy specialists provide families with a simple and understandable overview of their research and answer their questions. It is a unique opportunity for researchers, clinicians, and patients to exchange ideas.