Support concrete projects
What are your donations used for?
By participating in the “Wear your trainers and beat disease at work” operation, you contribute to the financing of medical research on leukodystrophies and to the support of families affected by the disease.
Our family support projects
Weekend of respite for ELA families
During a weekend, families benefit from a pleasant setting, leisure facilities adapted for their child, and activities to share moments of well-being and conviviality.
Read the project sheetTechnical aids
Families are helped to find and finance appropriate technical aids to compensate for the activity limitations encountered by people with the disease.
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Home adaptation
People affected by leukodystrophy and their families can enjoy a safe and secure environment.
Read the project sheetVehicle adaptation
People who are ill benefit from a form of transport adapted to their disability, enabling them to get around on a daily basis. Access to activities and social links are restored and maintained.
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Sporting/health and wellness activity
Regular physical activity is known to improve physical condition, social life, self-image, and overall health.
Read the project sheetOur research support projects
Identify a new pathogen in Canavan disease
Several mouse models are being studied to determine whether reducing NAAG concentrations can lessen damage to the myelin sheath.
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Preclinical study for functional restoration in megalencephalic leukoencephalopathy with subcortical cysts (MLC)
The functional deficiency of the MLC1 protein leads to MLC. The project aims to evaluate the effect of gene therapy restoring MLC1 functionality in a mouse model.
Read the project sheetClinical trial involving women with adrenoleukodystrophy (ALD)
This study will determine the proportion of women with ALD who have restless legs syndrome (RLS) and then evaluate the effects of pramipexole on the number of hours and quality of sleep in these women.
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Clinical trial on Vanishing White Matter disease (VWM, CACH syndrome)
Analysis of the safety and efficacy of guanabenz in delaying or halting disease progression in children with early-onset VWM.
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