European Leukodystrophy Association to collect UEFA's annual CHF 1m charity cheque from Michel Platini.
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UEFA has awarded its annual CHF 1m (€619,000) charity cheque to the European Leukodystrophy Association (ELA).
UEFA President Michel Platini will present the award to the ELA President Guy Alba and ELA ambassador Zinédine Zidane during the UEFA Champions League group-stage draw in Monaco on Thursday. The UEFA donation will enable the ELA to develop a Europe-wide network, bringing together families affected by leukodystrophy and providing access to key information for researchers and health professionals working in this sector. Since 1992, the ELA has worked tirelessly to raise awareness about genetic diseases, finance medical research and help the families affected by this tragic illness. To find a cure faster, the ELA has created a research foundation dedicated to all myelin diseases.
Leukodystrophies are rare genetic diseases, and this one-off donation would be earmarked to support a four-year project developing a European information and exchange network. The ELA covers all types of leukodystrophy and acts as a solidarity network for families in Europe. Its objective is to raise awareness of leukodystrophies, and pool resources in order to develop research in Europe.
Nerve signal damage
Leukodystrophies affect the myelin in the central nervous system. Myelin acts as a sheath around the nerve fibres and helps with the transmission of nerve signals. If this sheath is damaged, the nerve signals are interrupted, which can result in total paralysis, blindness, deafness, inability to speak or eat normally, and often death. Such a network will enable families in different countries to feel less isolated, facilitate the dissemination of information about leukodystrophy and myelin disorders and promote communication between patients, families, researchers and health professionals at European level.
On the occasion of the UEFA gala in Monaco – when European football's governing body celebrates the sport by reviewing the past season and launching a new season of continental club competition – the organisation donates CHF 1m to a charitable or humanitarian cause. Since 1998, UEFA's this donation has been made to the following organisations:
1998: Special Olympics Europe Eurasia (SOEE)
1999/2000: International Committee of the Red Cross (ICRC)
2001: Football Against Racism in Europe (FARE)
2002: Danish Cross Cultures Projects Association (CCPA) Open Fun Football Schools project
2003: Make-A-Wish Foundation® International (MAWFI)
2004: International Sports Organisation for Persons with Intellectual Disability (INAS-FID)
2005: ProPoor Sports (PPS), Homeless Street Soccer World Cup project
2006: International Blind Sports Federation (IBSA), blind futsal development project
2007: Cerebral Palsy International Sports and Recreation Association (CPISRA)
Click here for the ELA website www.ela-asso.com.