From Monday October 14 to Saturday October 19, 3,000 schools took part in the 21st edition of the ELA Dictation.

The Dictée d’ELA marks the launch of the 2024/2025 “Wear your trainers and beat disease” campaign. Written this year by Jean-Baptiste Andrea, winner of the Prix Goncourt 2023, and entitled “Les deux mondes”, it aims to raise students’ awareness of solidarity, respect for difference and fraternity, based on a common cause: the fight against leukodystrophies (serious genetic diseases that affect 20 to 40 children a week in Europe).

One billion steps for sick children

After the Dictée, it’s time for action with “Wear your trainers”! Schools often organize a race or sporting event inviting pupils to lend their legs to children suffering from leukodystrophy who can no longer use them. Prior to this, they raise funds in their immediate environment (family, neighbors…) to support medical research and the support of families affected by this terrible disease.

In the previous campaign, the students covered 1.1 billion steps. This year’s objective is to beat this record by mobilizing even more schools alongside ELA!

The mobilization continues!

Schools can take part on the date of their choice throughout the school year. The more schools get involved, the more likely we are to beat last year’s record!

“Le Coach ELA”, new mobilization anthem by Soprano

Committed to ELA’s fight against leukodystrophies for several years, Soprano has re-recorded his song “Le Coach”, adapting the lyrics to ELA’s fight. “Le Coach ELA” has become the emblematic song for the mobilization of young people. A video clip was produced with the help of The Mevel Crew.

Thanks to our readers!

Throughout the week, personalities from the worlds of education, entertainment, sport and the media visited schools to read the Dictée d’ELA to pupils. Our warmest thanks to them!

Committed to ELA in the fight against leukodystrophies, Soprano has re-recorded his song “Le Coach”, adapting the lyrics to ELA’s fight. “Le Coach ELA” is now the emblematic song for the mobilization of young people…and of everyone!

The clip was directed by André Dobosz with the help of The Mevel Crew, who had already performed on the Prix Ambassadeur stage on June 5.

It’s time to discover it on our YouTube channel and share it without moderation with the #LeCoachELA !

A major event for Thibault.

On Tuesday 25th June 2024, the city of Besançon (25) celebrated the Olympic Torch Relay. Numerous spectators gathered to witness this not-to-be-missed tradition on the eve of the Paris 2024 Olympic and Paralympic Games. In all, 10,000 torchbearers will be meeting the people of France in over 400 towns and cities.

Among them: Thibault, who suffers from leukodystrophy, had the immense honour of being able to walk a few hundred metres in the centre of Besançon and greet the public present at this beautiful ceremony. “It was extraordinary! There really aren’t any words to describe what I experienced for 200 metres… it’s truly magical!”

The final relay of the Olympic flame took place between Michel Chapuis, runner-up in canoeing at the 1964 Olympic Games, and Anaïs Bescond, the Haut-Jura biathlete. A host of activities and shows rounded off this wonderful day in the heart of the torch relay village.

A wave of solidarity for “Wear your trainers and beat disease at work” International Day

On Thursday 6 June 2024, a fine demonstration of solidarity took place on the occasion of the “Wear your trainers and beat disease at work” International Day. Many companies have brought their employees together to support the ELA association and people suffering from leukodystrophy.

The participating companies included: A+ Glass, Batigère, BPALC, Bouygues Bâtiment Grand Ouest, CAF de la Meuse, Caisse d’Épargne Grand Est EU, CPAM Côtes d’Armor, CPAM Loire Atlantique, Elekto Industrie, Ethic Search Partners, Hemera Digital Consulting, IBM – France, Kering, Mediawan, The Walt Disney Company, Un Toit Pour Tous, Val Software, Vertone, et Yes Interim.

Thousands of employees put on their trainers and accumulated 35,127,343 steps over the course of the day in aid of ELA’s children, thanks to the mobile application “Mets tes baskets”.This day is further proof of the commitment of ELA’s partners and their support in the fight against leukodystrophies. We hope to see many of them at future events, so that together we can continue this fight.

The 33rd General Meeting of the ELA association was held on 14 April at the Hôtel Pullman Montparnasse – Paris. This annual event, which brought together 240 people, gave families and members of the association the opportunity to meet up and take stock of the year 2023.

A look back at this high point in the life of the association.

From Friday onwards, ELA families arrived from all over France for this weekend, during which the pleasure of reunions was mixed with studious exchanges and moments of celebration and sharing.

Everyone was able to make the most of the visits and activities on offer in the capital, the facilities offered by the magnificent Pullman Montparnasse hotel, which was welcoming us for the first time, and of course the friends of ELA.

Our psychologist Marie Claude Blondeau led discussion groups on the themes of family carers and bereavement.

Saturday’s festive meal was attended by our patrons Aurélie Bargème, Maelig Charlery alias Humain Cool, Jérémy Charvet, Chiloo, Marie Hélène Lentini, Sandrine Quétier, Eléonore Sarrazin, Claudia Tagbo and Fabian Wolfrom: an impromptu concert and guaranteed entertainment on the dancefloor to everyone’s delight.

The AGM on Sunday morning was chaired by Crystelle Cottart, who introduced the plenary session by presenting her annual report. Director Nadia Cerise reported on the activities carried out in 2023 in support of the association’s families, medical research and awareness-raising campaigns.

The annual accounts for 2023, certified by the auditor, and the projected budget for 2024 were presented by treasurer Pascal Noirot.

All the resolutions were adopted unanimously.
At the close of the General Meeting, the outgoing third of the Board of Directors was renewed by secret ballot. Jorge Bernardino, Crystelle Cottart, Gaël De Miomandre and Pascal Noirot were re-elected as directors. A new member, Gaëlle Gomes Ramalho, joins the Board.

With our champions, let’s go for the gold medal for ELA’s children!

The corporate world gets involved with ELA

Every year since 2011, during a working day and without disrupting internal organisation, employees put on their trainers and count their steps for sick children using a mobile application. These steps are then converted into a donation for ELA.

A turnkey solidarity operation

Thanks to the “Mets tes baskets” application developed by ELA, everyone can easily count their steps and follow their ranking in real time. This online solidarity challenge can involve all teams, including those working remotely or spread over several sites. It’s a great opportunity to unite around a solidarity project, but also to raise employees’ awareness of rare diseases, disability and the fight against discrimination, as well as health in the workplace.

You can take part throughout the year, on the date of your choice or by selecting one from the solidarity calendar. Once the registration has been validated, ELA will send you the necessary materials (banner, t-shirts, documentation) as well as numerous resources to help you organise the event.

ELA is renewing its connected solidarity challenge to mark European Week for the Employment of People with Disabilities (EWPED) 2023.

The challenge of access to employment for people with disabilities

Leukodystrophies are neurodegenerative diseases that gradually destroy the myelin (the nerve sheath) of the nervous system, leading to severe disabilities in both children and adults. The European Leukodystrophy Association (ELA) provides information and support, and helps fund projects to compensate for the disability (travel aids, financial compensation for reduced activity, etc.).

How can you access employment without the necessary adaptations such as :
– mobility aids (vehicle, wheelchair),
– workstation adjustments (working hours, ergonomics),
– or financial compensation for reduced activity?

Let’s all take steps for ELA!

ELA is renewing its online solidarity challenge “Steps for ELA!” to raise public awareness of the challenges of access to employment for people with disabilities.

From 20 to 26 November, get out there and take as many steps as you can!
To take part:
• download the free “Mets tes baskets” application from the AppStore and PlayStore,
• enter the challenge code 132713,
• and the app will count your steps throughout the week.

The challenge begins on 20 November at 9am and ends on 26 November at 6pm.

During the “Mets tes baskets” national mobilization week from October 16th to 22th, more than 2,700 schools took part in the twentieth edition of the ELA Dictation. The event was launched across France on Monday October 16th.

A text full of hope

The Dictée d’ELA is the first part of the “Wear your trainers and beat disease” operation organized in schools. Its aim is to raise pupils’ awareness of solidarity, sharing and respect for differences, through an original text written each year by a well-known author. For its twentieth edition, the Dictation was written by Sabyl Ghoussoub, winner of the Prix Goncourt des lycéens 2022 for his novel “Beyrouth-sur-Seine”. Entitled “Un monde sans frontières”, it conveys a message of hope and determination in the face of obstacles.

Join the ELA 2024 team!

For this campaign placed under the sign of the Olympic and Paralympic Games Paris 2024 and labeled “Generation 2024”, ELA is counting on the mobilization of as many people as possible!

That’s what it’s going to take to reach the goal set by team captain Zinédine Zidane: one million students on the starting line, taking a billion steps to help sick children.

Ready to get your sneakers on?

Two highlights

Starting on Monday October 16, the Dictation marks the launch of the “Wear your trainers and beat disease” campaign with a large number of readers.

October 16th in Paris

Brigitte Macron and Sabyl Ghoussoub read the ELA Dictation to pupils at the Lemercier school in the 17th arrondissement of Paris, in the presence of Crystelle Cottart, President of ELA France. After this studious moment, the pupils were able to discuss with their readers for a day the values conveyed by the text and their support for the fight against leukodystrophies.

October 17th in Marseille

Soprano was back in Marseille to read the Dictation to pupils for the second year running! He played teacher for a day to a class of 5th graders at Pont-de-Vivaux secondary school, accompanied by Nono from Les Déguns. Guy Alba, President of ELA International, Jean-Marc Di Rado, representative delegate for the Southern region, and Maelle, who suffers from leukodystrophy, and her mother Pascale, were also there to talk about ELA’s missions and the support provided to families since 1992.

Thanks to our readers!

All over France, ELA’s sponsors, as well as celebrities from the worlds of sport and entertainment, visited schools to read the Dictation. These were wonderful memories that will remain engraved in the pupils’ minds, and gave them tenfold energy to put on their sneakers!

As part of the national “Mets tes baskets” campaign from October 16 to 22, the TF1 group renewed its support for ELA and put the fight against leukodystrophies in the spotlight on its airwaves.

“Les 12 Coups de Midi” in the colors of ELA

For a whole week, the daily show hosted by Jean-Luc Reichmann put the association’s fight in the spotlight. Sophie Thalmann, Miss France 1998 and honorary member of ELA, came on set to talk about advances in research and to remind us of the role we can all play in advancing the fight against leukodystrophies. She was accompanied by Crystelle Cottart, President of ELA France, who represented the families and spoke of the difficulties of everyday life when affected by the disease.

The week ended with the presentation of a cheque for €130,000 to ELA.

Group organizers keep up with the Dictation

On Monday October 16th, the group’s presenters visited schools to read ELA Dictation to pupils. Julien Arnaud, Karima Charni, Elsa Fayer and Laurent Mariotte donned their teacher’s hats for the day and discovered the text written this year by Sabyl Ghoussoub, Prix Goncourt des lycéens 2022.

Employees put on their sneakers

TF1 Group employees also got involved with ELA on Wednesday, October 18, through the “Mets tes baskets dans l’Entreprise” connected solidarity challenge. Using the “Mets tes baskets” application, they counted their steps and turned them into donations at the end of the day. 538 employees took part in the challenge, walking together more than 3,710,000 steps!

The “Zidane coaches researchers” spot

All week long, the TF1 group’s channels have also been broadcasting donation appeal spots featuring our emblematic godfather Zinédine Zidane. Playing the role of a coach, this time he is training a real team of researchers to find new therapies for leukodystrophies.

And to support research, ELA needs the generosity of as many people as possible. Since its creation, ELA has funded 559 research projects for a total of 47.55 million euros. This investment has paid off, with the first two treatments in Europe for two forms of leukodystrophy. One day, with your support, we’ll be able to cure all sick children!

We warmly thank the TF1 group for its loyal support of our fight.

Starting Monday, October 16, 270,000 schools are taking part in the 20^th edition of the Dictée d’ELA.

Written this year by Sabyl Ghoussoub and entitled “Un monde sans frontières” (“A world without borders”), the ELA Dictation aims to raise students’ awareness of solidarity, respect for differences and fraternity, based on a common cause: the fight against leukodystrophies (serious genetic diseases that affect 3 to 6 children a week in France).

A billion steps for sick children

Every year, “Mets tes baskets” invites schools to organize actions, usually sporting, to raise funds for medical research and support for families affected by this terrible disease.

For this 2023/2024 edition, labelled “Génération 2024”, the captain of the ELA 2024 team Zinédine Zidane has announced an ambitious goal: to bring together a million pupils to take a billion steps for sick children! Schools can take part at any time of the year, including during Olympic and Paralympic Week from April 2 to 6, 2024.

Dictation at home too!

This year, the Dictée d’ELA will be read right into the home, thanks to an exclusive voice application available on connected speakers equipped with Alexa.
Simply say “Alexa, launch the ELA dictation” to be guided to the 2023 dictation or one of the previous versions, all recorded by famous voices. Maïmouna Doucouré, Michel Cymes, Léa Salamé and Thierry Lhermitte have all lent their voices to the game, and will help test the knowledge of young and old alike. Corrected texts will be sent to parents by e-mail or displayed on screen for compatible devices.

Join the ELA 2024 team!

The Dictée d’ELA is the first stage of the “Mets tes baskets et bats la maladie” operation in schools. If you haven’t signed up yet, you can participate throughout the school year, and especially during Olympic and Paralympic Week, which will take place from April 2 to 6, 2024.

Friday September 1st, an exceptional evening in aid of ELA with Florent Pagny and his friends (Anggun, Amel Bent, Patrick Bruel, Carla Bruni, Calogero, Lara Fabian, Patrick Fiori, Jenifer, Marc Lavoine, Christophe Maé, Kendji Girac, M’Pokora, Pascal Obispo, Raul Paź, Anne Sila, Slimane, Soprano, Diego Torres, Vianney and Zazie) in prime time on TF1.

Florent Pagny, a committed sponsor for 25 years

Florent Pagny met the association in 1999, when he received a photo of Jérémie in the mail, along with a letter from his mother Francine. Francine explained the terrible disease he was suffering from: leukodystrophy. Touched by this heartfelt appeal, he decided to get involved alongside the ELA families. A first step was taken between the singer and the association with the release of the album “Récréation”, part of the royalties from which were donated to ELA.

From the early 2000s onwards, he made numerous appearances to raise awareness of the families’ struggle.

In addition to this exceptional evening, the “2Bis” album featuring the 20 duets performed will also be available on September 1st. Part of the royalties will be donated to ELA.

The fight goes on

25 years on, Florent Pagny remains faithful to ELA’s fight. As he reminded us at the opening of the evening, the association needs everyone’s support more than ever to advance medical research and support families affected by the disease.

Join the most beautiful team in the world: the one with companies that walk to help children with leukodystrophy!

This year, take part to the solidarity connected challenge “Wear your trainers and beat disease at work”. It is an easy action to implement that allows companies to deploy and animate their CSR strategy.

During a working day or more, in your place or in home office, without modifying your internal organisation, make as many steps as possible for sick children!

Thanks to the free app “Mets tes baskets”, you can easily count your steps all along the challenge.

For the next “Wear your trainers” campaign, we need to do faster, higher, stronger, like the athletes who will be taking part in the PARIS 2024 Olympic and Paralympic Games. For the launch of this ELA team placed under the sign of the Olympic and Paralympic Games, we are fortunate to be able to count on Tony Estanguet, President of the Olympic and Paralympic Games 2024, Florent Pagny and Zinédine Zidane, both honorary members of ELA.