On June 20, an exceptional concert by Florent Pagny, honorary member of the association, was held at La Seine Musicale to raise funds for the fight against leukodystrophies.

An exceptional concert

Florent Pagny has been supporting the ELA association for almost 25 years. He knows that most children suffering from leukodystrophy still have no treatment. That’s why he decided to get his friends together for a big evening in aid of ELA, to be broadcast later on TF1.

Our godfather performed duets with : Anggun, Amel Bent, Patrick Bruel, Carla Bruni, Calogero, Lara Fabian, Patrick Fiori, Jennifer, Marc Lavoine, Christophe Maé, Kendji Girac, M’Pokora, Pascal Obispo, Raoul Paź, Anne Silla, Slimane, Soprano, Diego Torres, Vianney and Zazie.

Through these duets, Florent Pagny retraced more than 30 years of career, 20 multi-award-winning albums, and above all an ever-strong commitment to ELA. A wonderful moment of sharing and solidarity for all those present that evening.

A heartfelt commitment to ELA

The singer met the association in 1999, when he received in the mail a photo of Jérémie and a letter from his mother Francine, explaining 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. Years later, the singer remains faithful to the families’ fight.

He opened the concert with a reminder of his commitment to ELA, and the importance of supporting the association to carry out its missions.
And for that, ELA needs the generosity of everyone.

On June 7, student ambassadors, families and many ELA supporters gathered at the Cité des Sciences et de l’Industrie in Paris for the 18th ELA Ambassador Award ceremony.

Ambassadors, athletes, artists: all committed to ELA!

Over 250 ambassadors from all over France and numerous personalities from the world of sport and entertainment attended the event. Among them were Olympic and Paralympic athletes, as well as loyal ELA supporters: Caroline Bourg, Frédéric Bouraly, Jérôme Fernandez, Valérie Gauvin, Pascal Gentil, Priscilla Gneto, Michaël Gregorio, Floria Gueï, Béatrice Hess, Cécilia Hornus, Muriel Hurtis, Marie-Hélène Lentini, Maëlle, Madeleine Malonga, Mentissa, Sandrine Martinet, Antoinette Nana Djimou, Charlie Nune, Florent Pagny, Pihpoh, Sandrine Quétier, Thierry Ragueneau, Arnaud Sadowski, Sophie Thalmann, Titoff, Grâce Zaadi and Zinédine Zidane.

A unique ceremony

It opened in song with Mentissa and Maëlle, both former contestants on “The Voice”.

Sandrine Quétier, host and honorary member of ELA, acted as master of ceremonies, giving the floor to the speakers. Crystelle Cottart, President of ELA, thanked all the students, pointing out that this year, more than 3,300 schools had mobilized and 570,000 students had put on their sneakers for the children of ELA: ““You have shown us once again how much you can mobilize for this fight that ELA is waging”.

Céline, mother of Louis and Augustin, then shared her family history marked by metachromatic leukodystrophy, with the clinical trial Augustin underwent in Milan when he was barely a year old. Today, Augustin is “doing very well and living his life as a little boy”. This good fortune was made possible by ELA’s unstinting support for medical research for over 30 years.

Sophie Thalmann, Miss France 1998 and honorary member of ELA, talked about her commitment to helping families for over 25 years. On May 25, she went to Lafitole to support Mathéo and his family as part of the “Mets tes baskets et bats la maladie” operation. Mathéo should have benefited from an innovative gene therapy treatment, but the American laboratory producing the treatment abruptly withdrew from the European market a few days before the operation. To prevent this from happening again, his mom Élodie has launched a petition supported by ELA.
“I’m counting on you to ask those around you, your loved ones, your parents, to […] sign this petition to make the biggest noise!”
His appeal has been heard, for at the time of writing, the petition has exceeded 50,000 signatures on the change.org website.

Guy Alba, founder of ELA and President of ELA International, recalled the existence of two treatments for metachromatic leukodystrophy and cerebral adrenoleukodystrophy. This success has been made possible by the constant mobilization of students since 1994.
“You have a share in this therapeutic success in your sneakers!”

Let’s go for the ELA 2024 team!

So for the next “Mets tes baskets” 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 2024 team placed under the sign of the Olympic and Paralympic Games, we are lucky 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.
They were interviewed by real little reporters Augustin, Aylin and Faustine, pupils at Collège Darius Milhaud in Sartrouville (78), which has been awarded the “Génération 2024” label.
“Paris 2024 is at ELA’s side to ensure the success of the Mets tes baskets operation,” declared Tony Estanguet, announcing at the same time the Génération 2024 label for the 2023-2024 campaign.
During the interview, Florent Pagny recounted his encounter with ELA in 1998, following a letter from Francine, mother of Jérémy, who suffers from leukodystrophy. It was a heart-rending appeal that got the ball rolling.

It was Zinédine Zidane, captain of the ELA 2024 team, who announced the objective: “To help the ELA team grow, we first have to set ourselves an ambitious goal. For the 2024 Olympic and Paralympic Games, I’m launching a new challenge: 1 million students in sneakers to walk together 1 billion steps for sick children!”
He invited all participants to take the first steps in the Parc de la Villette!
With a team like this behind it, ELA can overcome any obstacle!

At the initiative of our sponsor and director Arnaud Sadowski, the Marlymages Cinema in Marly (57) puts our fight in the spotlight!

From April 19 to 25, for each cinema ticket purchased, 1€ is donated to the fight against leukodystrophies.
Other surprises await you all week long!

Thank you for your support!

Partners’ evening on March 16 at the Maison de l’Alsace

On March 16th, ELA had the pleasure to invite many partner companies to the Maison de l’Alsace in Paris, which generously welcomed us in its magnificent rooftop, for this exceptional evening.

Hosted by Sandrine Quétier, this evening was an opportunity for Crystelle Cottart, President of ELA, to thank the partner companies for their precious support and to review the actions made possible thanks to their mobilization.

Families, researchers, partners, sponsors and godmothers were able to testify to the role played by ELA in advancing the fight against leukodystrophies.
After a presentation by Nadia Cerise, Director of ELA, of the different actions carried out in favor of the families, Dr Françoise Piguet, researcher at the ICM, came back on the progress of research in leukodystrophies and in particular on gene therapy as a possible treatment. The Hooge family offered a poignant and hopeful testimony on the journey of their son Augustin, 6 years old, who suffers from metachromatic leukodystrophy and who was recently able to benefit from this gene therapy in Italy. It was a great moment of emotion to see him running and laughing among the guests.

This evening was an opportunity to remind the guests of the various sponsorship actions that exist to support ELA, and in particular the connected solidarity challenge “Mets tes baskets dans l’Entreprise” (Put your sneakers on in the company) whose international day will take place this year on June 15. Pierre-Marie Argouarc’h, Director of Employee Experience and Transformation at FDJ, Charles Lantieri, Deputy Managing Director of FDJ, and Jean Laemmel, Director of Banque ODDO BHF Strasbourg, gave us their feedback on this solidarity operation, which has been a great success with companies.

Finally, many ELA sponsors honored us by coming to share this moment of exchange and conviviality: Shemss Audat, Lionel Erdogan, Michaël Gregorio, Cécilia Hornus, Déborah Lassource, Romain Magellan, Méline Nocandy and Thierry Ragueneau.

• Crystelle Cottart, President of ELA France,
• the council
• Nadia Cerise, Director
• the whole team
wish you a happy new year 2023.

From 17 to 22 October, while others were writing and running to help sick children, 2,400 pupils from 25 primary schools in Cambrai, in the north of France and the surrounding area took to the tatamis for a good cause.

This great week of solidarity around judo, in support of ELA, is a long-standing project of Francis Vilain, technical director of the “Judo Cambrai” club and judo teacher for 40 years.

Kodomo, the emblematic mascot of the French Judo Federation, came to present the introductory judo classes watched by the amazed and amused children on the tatamis of the Alain Colas sports centre in Proville, kindly lent by the municipality for the occasion.

On Wednesday, a departmental training course was led by Cyrille Maret, bronze medallist at the 2016 Olympic Games in Rio, European vice-champion in 2018 and world team vice-champion in 2019.

Finally, this week of sports mobilisation ended on Saturday with a day of activities for the youngest, as well as a tournament in which nearly 600 judokas aged 4 to 14 competed. About thirty judo clubs from the surrounding area were invited to this tournament.

Julien, who suffers from leukodystrophy, and his family had the pleasure of meeting the entire organising team during the day, as well as a selection of the women’s judo team made up of champions Mélanie Vieu, Anaïs Mosdier, Faiza Mokdar and Agathe Devitry.

We would like to warmly thank Francis Vilain, France Judo and the commune of Proville for their support to the event, as well as all the volunteers involved in the organisation and the four champions who came to meet Julien and his family.

European Week for the Employment of People with Disabilities

How to get a job without necessary adaptations such as:
• assistance for move (vehicle, wheelchair),
• workplace adjustments (work hours, ergonomic design)
• or financial compensation linked to a reduced occupation ?
ELA informs and supports people affected by a leukodystrophy in their administrative procedures and helps financing disability compensation projects.

Together, let’s take steps for ELA !

To raise awareness about the issue of getting a job for people with disabilities, ELA organises a solidarity connected challenge : “Steps for ELA”.

From 14 to 20 November, let’s be many of people take as many steps as possible.
To participate :
• download the “Mets tes baskets” application on AppStore and PlayStore,
• eenter the challenge code 128677
• the app counts your steps during the whole week.

On Monday 17 October and throughout the national “Put your trainers on” (“Mets tes baskets”) week from 17 to 22 October, schools took part in the Dictation on the unpublished text written by Mohamed Mbougar Sarr, Prix Goncourt 2021 and entitled “L’étoile qui n’avait pas sommeil” (The Star Which Had No Sleep”)

There is a general mobilisation for the 30th anniversary of ELA!

The message of the 2022-2023 “Put on your trainers and beat the disease” (Mets tes baskets et bats la maladie)campaign is clear: for ELA’s 30th anniversary, let’s give it our all and beat participation records! Last year, more than 520,000 students and 3,000 schools responded to the association’s call to do the impossible and help sick children. For the launch of the 29th edition, primary schoolssecondary schools and upper secondary schools were once again mobilised, culminating in the ELA Dictation.

Each year, a renowned author writes an original text on leukodystrophies, disability and respect for difference. The text is then read to the pupils and becomes a support for discussion on the values of ELA and the families’ fight against the disease.

Highlights of the Dictation

Monday 17 October in Paris

Brigitte Macron read the Dictation to the pupils of the La Rose Blanche Secondary School, in the company of Crystelle Cottart, President of ELA, as well as Léonie, who suffers from leukodystrophy, and her family.

Tuesday 18 October in Marseille

Zinedine Zidane, patron of ELA, and the singer Soprano read the Dictation to the pupils of Henri Barnier Secondary School, in the company of Guy Alba, founder of ELA and President of ELA International, as well as Jean-Marc Di-Rado, Vice-President of ELA, and Maëlle, who suffers from leukodystrophy, and her family.

Thursday 20 October in Froissy (60)

Mohamed Mbougar Sarr read the Dictation to the pupils of Gérard Philippe Secondary School. He was accompanied by Crystelle Cottart, President of ELA France.

And throughout France

Throughout the week, personalities from all walks of life (sportsmen and women, entertainers, artists, academy rectors, etc.) also visited the schools to read the Dictation and share a beautiful moment with the pupils.
We warmly thank all the people who accepted to be teachers for a day for ELA!

On Sunday 23 October, over 1,100 people counted their steps for ELA!

On that day, everyone was invited to participate in the connected challenge which took place from 9am to 6pm.

The idea was simple: to take as many steps as possible during the day.

To participate, all you had to do was :
• download the “Mets tes baskets” application (App Store or Google Play Store),
• enter the code 231022 (for 23 October 2022),
• and make a pledge.

The event generated a great mobilisation, bringing together 1,100 people and enabling almost 3.5 million steps to be taken! A big thank you to everyone for this great show of solidarity!

Mohamed Mbougar Sarr is a Senegalese novelist, born on 20 June 1990 in Dakar. In November 2021, he received the Goncourt Prize for his fourth novel “La plus secrète mémoire des hommes” (The Most Secret Memory of Men), which was inspired by the fate of the Malian writer Yambo Ouologuem. He became the youngest winner and the first author from sub-Saharan Africa to win this prize. He agreed to become the author of the ELA Dictation 2022.

When you were a student, what was your relationship with dictation, with words? Do you think you can produce engagement with words? What message would you like to send to the young people who will participate in this Dictation?

Read his interview in the ELA quarterly news magazine n°119, and in the video below:

Since 1994, the association has been inviting all schools, from primary to higher education institutions, to join in the fight against leukodystrophies through its “Wear your trainers and beat the disease” campaign. The aim is to create a great surge of generosity. Primary schools, secondary schools, upper secondary schools… all can participate.

Since 1996, this campaign has been sponsored by the Ministry of Education. This support is renewed every year and demonstrates the educational value of the project and encourages all schools to get involved with ELA.

This year, people are working hard for sick children, breaking records by lending legs to children with leukodystrophy who can no longer use them.

Rock solid determination

This year we are commemorating 30 years of ELA, which we are sharing with the French families, and sponsors, but also with our friends from other ELA associations who have joined us throughout these 30 years: ELA Belgium, ELA Switzerland, ELA Spain, ELA Luxembourg, ELA Italy and ELA Germany.

These years have not been easy, they have had their share of small and big pains such as the loss of a loved one, but also moments of pride, success, conviviality and even joy such as during important events, the highlights of ELA.

We commemorate 30 years of fighting lead with rock solid determination, 30 years of perseverance, loyalty and constancy despite tears, doubts and pain. We think of all those who fight daily against the disease, of all those, too many, who have left us during these 30 years.

To you who are fighting this terrible disease. To you, the families who are coping with this determination that compels admiration. It is to you that we dedicate the celebration of these 30 years of struggle. You are our motivation, our energy and our engine!

Being seen, known and recognised were the essential steps for a rare disease such as leukodystrophy to reach the widest possible audience in order to advance research. Thanks to you, families, researchers, partners, sponsors… in the fields of visibility, commitment, solidarity and the advancement of research, we have scored goals! With you, things are going well, so life goes on! The fight too!