ELA’s 20th anniversary
Since 1992, ELA has been informing and educating the general. Medical information and medical and social projects of the association, new families, general information and especially numerous events allow us to trace the key moments of the association. Here are some choice events that marked 20 years of action for ELA.
Creating ELA. The general assembly of the ELA was held February 15th, 1992 at the headquarters of the Republican Lorrain in Metz. The objectives were clear: fund medical research, support families, raise awareness and develop its international activity.
ALD gene discovery. Adrenoleukodystrophy gene is identified by Professors Patrick Aubourg and Jean-Louis Mandel: a scientific discovery that represents a real hope for families in understanding the disease.
Lorenzo. The movie “Lorenzo” George Miller brings great visibility to the struggle of parents of ELA. This film relate the story of Michaela and Augusto Odone, facing their son Lorenzo’s illness. The general public discovers the severity of leukodystrophies.
“I run, You sponsor, He lives” … This is the first name of the association’s event directed to pupils. The operation will be “Wear your trainers and beat disease in school” but for now, the idea of citizen mobilization operation is launched.
Center Parcs. Organization of the first weekend of the families of ELA at Center Park in Sologne. 27 families gather for the first time to get acquainted, share and enjoy a truly relaxing time. The organization of this trip was so successful that an appointment is made for the following year.
ELA Fort Boyard. Fort Boyard hosts ELA for the first time. Its team, composed of Luc Alphand, Sebastien Levicq, Pierrick Maia, Nallet Chantal, Denis Perez and Charlotte Timmermann, is determined to defeat the Fort for ELA. More than € 15 000 are collected by the first sponsors of ELA athletes. It is also a huge step for ELA’s image.
ORs. In November 1996, ELA was awarded the recognition of public interest, proof of the necessity and quality of its work.
Kickoff France-Lithuania Basketball: The basketball team from France supports the struggle of ELA and sponsors the operation “I run, You sponsor, He lives”. On the occasion of his match against Lithuania played in Nancy, Anthony, 12 years old boy suffering from leukodystrophy, kicks off.
The RAIL (Network Help and Information Leukodystrophies) was created to better meet the needs of families. A psychologist is hired. It supports patients and their families and gives them an attentive ear.
Kicking off France and Andorra. October 14th, Jeremy, a 6 years old boy, suffering from a leukodystrophy, meet Zinedine Zidane on the field at the Stade de France and kicks off the Andorra-France match along with Sophie Thalmann, godmother of ELA .
Story of an unusual encounter. One might think that this is the story of the bottle to the sea. By addressing to Florent Pagny her testimony, Francine, Jeremy’s mother, made a choice: she believed in the man, his qualities of heart, and above all, she was capable of sharing her indignation. By choosing to help Jeremy and ELA, Florent has opted to provide practical support for children and parents destroyed by the disease. In 1999, when he released his album “Time Out”, Florent Pagny shared a portion of his rights with ELA for the fight against leukodystrophies.
Zinedine Zidane. Zidane became the official sponsor of ELA and participated in the communication of the day “All in trainers to beat the disease,” the real starting point of the action of ELA directed towards the general public. Zinedine met Yan, a 6 year old child suffering from a leukodystrophy with whom he shared the poster for this campaign. The first clip of ELA is directed by Roman Polanski.
Toulouse in the heart of the campaign “All in trainers“. Thursday, October 18th, 2001, the second national day of ELA: companies, associations, schools, businesses and communities have once again put on their trainers for ELA. Toulouse was the focus of the day “All in trainers” this year. Concerts in churches, animation markets and sporting events punctuated this day of solidarity, marked by the arrival of Luc Alphand, Beatrice Hess, Florent Pagny, Emmanuelle Seigner, Zinedine Zidane and players from the Stade Toulousain.
The prime time of ELA. ELA is 10 years old and for the first time, the association is present in primetime on France 2 in a TV program entirely devoted to ELA, presented by Michel Drucker. The honor guest of the show “Zidane – ELA” no longer needs to be presented. An appeal for donations was launched throughout the evening, which hosted many artists. The objective is to finance the construction of the European Centre for Myelin.
“All in trainers for ELA’s Spring”. ELA is forging ahead and spring festival on March 19th at the Champs de Mars in Paris. A public event is organized, punctuated by a football match between Zidane sponsors ELA and young patients. The day ends with the live broadcast of the show on France 2 ELA presented by Michel Drucker. For the first time on French television, a standard star is set up to answer calls from viewers who wish to donate.
Leukodystrophy in the Petit Robert. Speaking about it is already helping. Frequency of use of the word “leukodystrophy” may then enter the Petit Robert. First win!
Dictation of ELA. ELA creates another highlight. Monday, September 20, 2004 at 10am, thousands of students in hundreds of schools across France are involved in the dictation ELA written by Philippe Claudel (Prix Renaudot in 2003). Entitled “For you, for me,” this original text of the exchange, engagement and solidarity marks the kickoff of the campaign “Put your sneakers and beat the disease.” Sponsors of ELA teachers improvise a day to read this text to students.
A research foundation ELA. With the support of the Ministries of Research and Interior, the ELA Research Foundation has seen the light at the end of 2004, with a financial commitment of the State to the tune of 10 million euros.
By opening its bidding to all overseas laboratories concerned, especially in Europe, by strengthening research on the theme of “repair” of myelin, and organizing a more rapid circulation of scientific information, the ELA research Foundation brings together the best current skills and reduces the time that still separates us from healing.
“Stages Festival” in Rennes. A great day of action is organized in collaboration with Rennes Rennes stadium. Many sponsors of ELA and especially Zinedine Zidane and Florent Pagny made the trip to meet the families of the association and participate in a charity match.
The award “Ambassador Put your sneakers ..”. To reward the mobilization of all those students who symbolically lend their legs to their fellow patients who can no longer be used, the association created the award: “Put your sneakers Ambassador.” It rewards students who best represent the values of solidarity and sharing promoted by the campaign “Put on your sneakers and beat the disease.”
European Centre for Myelin. After laying the foundation stone by Zinedine Zidane in June 2005, the EMC since 2007 regularly hosts officials of the European antennas and the Board of Directors of the association.
Olympia. Thanks to Christian Jeanpierre, but also sponsor sports journalist ELA and drummer Rockaway, a concert was held on the legendary stage of the Olympia Bruno Coquatrix. Before more than 2,000 spectators, the group resumed standards Dire Straits.
Campaign “Save the children”. In May 2008, the association launched an emergency campaign entitled “Save the children”. This was to fund a clinical trial for metachromatic leukodystrophy (MLD), a leukodystrophy of the most serious and most frequent (20% of cases identified by leukodystrophies ELA). After 8 months, 885,000 euros were raised through the generosity of donors.
TG / ALD. In November 2009, the journal ‘Science’ publishes the results of research of Dr. Patrick Aubourg and Dr. Nathalie Cartier on gene therapy for adrenoleukodystrophy. A technique quite innovative in this autologous bone marrow where a vector of the AIDS virus used to carry off the corrected gene. Three children have benefited from this treatment gives hope to other forms of leukodystrophies, and even other more common diseases.
Mont Blanc. The flag planted by ELA Zidane floats on top of Mont Blanc: an image that will not soon be forgotten. No shadow of a cloud, an endless sky and a red flag made with the three letters of the association. ELA has reached the top of Europe with its iconic godfather. Accompanied by sports journalist Christian Jeanpierre, also sponsor of ELA, the message is clear: they have made this challenge to those who fight against the leukodystrophies, for patients, their families.
Euro Disney. At the initiative of Zinedine Zidane, over 150 families ELA lived a dream day in the wonderful world of Disneyland Paris. The sponsor of ELA wanted to go even further and put the disease in brackets by providing children ELA a relaxing and recreation away from leukodystrophies, accompanied by a hundred sponsors of the association.
ELA celebrates Europe Day. May 8, the 60th anniversary of the Schuman Declaration, a great football game pitted the European team led by ELA Zinedine Zidane and Luis Figo to a team of former international Luxembourg. A nice way for ELA to assert its European dimension.
A stamp collector for ELA. The Post has joined the fight against ELA leukodystrophies by editing a stamp is emblematic of the sponsor of the association, Zinedine Zidane. A sheet of 10 stamps was put up for sale at a price of 9.90 euros, 1 euro donated to ELA.
“Put your shoes in the business.” ELA accept campaign “Put your sneakers and fight disease” in the business world. A day of solidarity that involves all employees of the company, an opportunity to create internal cohesion, an original way to alert as many disease and disability, the opportunity to educate each employee on their health. The concept is simple: employees should multiply their not without changing their working day. For each step is completed, the participating company undertakes to pay a dime to € ELA. A successful initiative and winner trophy Sporsora in category “social commitment”.