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30-11-11
Students unite to fight rare diseases
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Montpellier Business School was the only institution of higher education to participate in the 8th ELA dictation, which involved almost 2,000 schools and 17,000 students in France this year, as well as the Ministries of Education and Health.
The school has been involved in this effort for three years. This year, with Lionel Garnier representing the ELA of the Languedoc-Roussillon region, Olivier Giroud, an ELA supporter and professional soccer player with Montpellier HSC, read the dictation written by the novelist Jean d'Ormesson.
"We are very proud to participate in this cause,” Giroud said at the event, “and I count on you to educate the people you know about these diseases.” The ELA, chaired by Guy Alba, hopes that by holding this dictation competition it can educate students and encourage awareness about disability.
A Priority: Funding Research
As Jean d'Ormesson's text concludes, "Every word we write is a bit of hope for those who are sick. We are alive, healthy and happy to be alive -- despite dictations. Let us think for a moment of those who are unhappy.”
In France, 160 children are born with leukodystrophies per year. Presently, there is no real treatment for leukodystrophies, although much progress has been made. “These are tricky diseases,” Lionel Garnier said. “And last year it was officially recognized that both cellular stress and genetic predisposition can cause them in adults.”
The ELA's goal is to help research laboratories better understand the mechanisms of the disease, to identify the genes that are responsible and to develop new therapeutic strategies. “All efforts help us,” Garnier said. “We need money to develop research. A cure will perhaps not arrive in time for our children but for the future.”
Training Responsible Managers
“It's uplifting, it's very moving,” students present commented about the event. “We couldn't imagine that happening, that we could endure that.” The ELA dictation fits squarely within Montpellier Business School's policy of supporting openness and diversity, its attitudes on disability, and counts as one among the many instances of community involvement by our students.
“As future managers, you will have to deal with, among other things, specific problems, such as disability and/or adapting the working hours of your employees,” said Lionel Rivière, director of the bachelor's program. “Companies still have a lot to accomplish in this regard.”
“These diseases might touch your employees through the illness of a family member,” Lionel Garnier noted, “and family support is very important. It's very difficult to watch the disease progress.”
THEY NEED YOU
For any student who wants to get involved in the fight against the leukodystrophies, just send a proposal to the ELA and they will help you organize your event by providing a kit. You can also participate in Prometheus and Alpha projects that support the association.
For more information: www.ela-asso.com
THE EUROPEAN LEUKODYSTROPHY ASSOCIATION
Founded in 1992 and recognized as a charity by the French government, the ELA is chaired by Guy Alba and supported by soccer star Zinedine Zidane. Its mission is to assist and support families affected by a leukodystrophy, fund research, encourage public awareness and expand its international activities.
The leukodystrophies are a group of rare genetic diseases. They destroy the central nervous system (the brain and spinal cord) in children and adults. They affect myelin, white matter coating the nerves that allow them to conduct impulses between the brain and the rest of the body. The diseases thus affect the motor and intellectual functions of those stricken.
For more information:http://www.youtube.com/watch?v=65m_s17btvU
