>@Mireia Gonzalez Torrijos/EIB
©Mireia Gonzalez Torrijos/EIB

On 6 May 2019, Vice-President of the European Investment Bank (EIB) Emma Navarro welcomed founder of the European Leukodystrophies Association (ELA) and President of ELA International Guy Alba to the Bank’s headquarters in Luxembourg. The ceremony officially marked the donation of EUR 26 200 from the EIB Group to support ELA’s activities.

The funds, resulting from a collection by EIB staff plus a subsidy from the EIB Institute and a donation from the EIB’s Management Committee, will be used to support a medical research project on a specific type of leukodystrophy known as Childhood Ataxia with Central Hypomyelination (CACH).

Leukodystrophies are genetic neurodegenerative diseases that can destroy the brain of a previously healthy child in only a few weeks. Each week in Europe, 20 to 40 children are born with these disorders.

For 27 years, ELA has been accelerating research and assisting patients and their families with one goal – to eventually defeat leukodystrophies.

Created in 1992 in France by Guy Alba, ELA raises public awareness, assists and supports the families affected and stimulates the development of research into these rare progressive and metabolic genetic diseases. Over 27 years, ELA has financed 511 research projects amounting to EUR 43.5m, making it the world’s leading private finance provider for these disorders.

The genetic research and therapy for leukodystrophies could have major implications for other genetic and neurological illnesses such as multiple sclerosis, Parkinson’s and Alzheimer’s diseases and amyotrophic lateral sclerosis (ALS), extending their impact.

Research is forging ahead and needs support. In 2010, the European scientific community specialising in leukodystrophies and ELA took on a multi-disciplinary project entitled "LeukoTreat - Therapeutic Challenge in Leukodystrophies: Translational and ethical research towards clinical trials”, financed by the European Commission’s Seventh Framework Programme for Research and Development. In 2012, ELA also launched a biobank project in Nancy, France, which received EUR 760 000 of financing from the European Regional Development Fund.

On 2 and 3 December of this year, ELA International, with its headquarters in Luxembourg, will hold a second symposium on leukodystrophies, which will bring together leading experts with a view to advancing towards clinical trials.  For additional information on ELA: www.elainternational.eu.
 

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