Support concrete projects
What are your donations used for?
By participating in the “Wear your trainers to beat the 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. Dedicated activities, workshops and entertainment are organised to help children and families relax. They also benefit from information meetings and discussion groups.
Consult the project sheetTechnical support
Families are helped to find and finance appropriate technical aids to compensate for the activity limitations encountered by people with the disease.Indispensable for facilitating the activities of the ill person, technical aids are also useful for close carers such as family, friends, support professionals, medical or paramedical staff, school or life assistants.
Consult the project sheet
Home adaptation
People affected by leukodystrophy and their families can enjoy a safe and secure environment.
Consult the project sheetVehicle conversion
People who are ill benefit from a form of transport adapted to their disability, enabling them to get around on a daily basis: going to medical consultations, appointments with paramedical professionals, work, shopping, going on holiday, attending leisure or cultural events, etc.
Access to activities and social links are restored and maintained.
Our research support projects
Detecting a new pathogen in Canavan disease
Various mouse models are being studied to determine whether reducing NAAG concentration reduces damage to myelin sheaths.
Consult the project sheetPreparatory study for functional restoration in megalencephalic leukoencephalopathy with subcortical cysts (MLC)
Functional deficiency of the MLC1 protein leads to MLC.
The project involves evaluating the effect of a gene therapy restoring MLC1 functionality in a mouse model.
Clinical trial in women with adrenoleukodystrophy (ALD)
This study will determine the proportion of women with ALD suffering from restless legs syndrome (RLS). It will then assess the effects of pramipexole on the number of hours and quality of sleep in these women.
If beneficial effects are observed, screening for RLS in women with ALD will be recommended for treatment in all countries.
Clinical trial on CACH syndrome
Analysis of the safety and efficacy of guanabenz in delaying or halting disease progression in children with early CACH syndrome.
The trial plans to include 40 patients under 10 years of age.
This is the first proposed treatment trial for these patients.
