EIB makes donation to ELA to help patients and their families fight leukodystrophies
10 May 2019
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.
The EIB Group has stepped up its level of precaution at its headquarters in Luxembourg and in its external offices. All staff will telework as of 16 March. A small number of staff whose physical presence on EIB premises is indispensable will continue to be present on the EIB campus. The decision aims to protect the health of employees and ensure the continuity of the EIB Group’s activity.
On Wednesday the EIB identified its first case of one staff member who tested positive for corona virus.
As a precautionary measure, the EIB decided not to hold the meeting of its Board of Directors planned for Thursday 12 March in person. Decisions on the Board’s agenda will be taken by written procedure. The Bank has put in place measures to prevent disruption to its governance or operation approval schedule.
On Monday 2 March, the former President of the European Council, Donald Tusk, visited the EIB in Luxembourg on a joint invitation from the Bank, the European Stability Mechanism (ESM) and the Court of Auditors.