Vincent Marc, a loyal partner of the Association, is embarking on a sporting and solidarity challenge: to run four marathons over one weekend (Paris, Marseille, Toulouse) from 27 to 29 September and collect donations for the fight against leukodystrophies.

A long-standing partner

Vincent has been supporting ELA since 2011. He first became aware of the association during the “Wear your trainers and beat disease” campaign happening at his company. Touched by the battle being waged by sick children and their families, he quickly became an ambassador for our cause and made the campaign a must-attend event for his teams.

His commitment goes beyond the workplace, as he regularly takes part, alongside the families, in La Course des Héros in aid of ELA.

He is taking his commitment even further with this new challenge. He says: “At a time when sport can lift mountains and provoke outpourings of solidarity, I had a crazy idea: to run 4 marathons over one weekend in 4 different towns and places in France.”

Throughout his journey, Vincent is inviting ELA families and anyone else who wants to join him on his route and, for the bravest, to run with him! He has also set up an online fund to raise money to support the fight against leukodystrophies.

The route

Friday 27 September:
• 9AM to 12PM: Start from the Tour D2 IQVIA in La Défense
• 12PM to 2.30PM: Race to Gare de Lyon, from where he will take the train to Marseille
• 6PM: Arrival in Marseille at Gare St Charles, from where he will start his second marathon until 11pm. The route will take in the Mucem, the Vieux Port and the Vallon des Auffes. There will be a meeting point at L’Ombrière du Vieux Port.

Saturday 28 September:
• 8AM to 10AM: Race through the Stade de la Fourragère, then on to Toulouse by car
• 4PM: Departure for another marathon from Place du Capitole, then a loop along the banks of the Garonne, between Pont Neuf and Pont St Pierre. There will be a meeting point in front of the Capitole.

Sunday 29 September:
• Back to Paris towards Courbevoie
• From 10AM: Vincent will meet you at the Stade Jean-Pierre Rives in Courbevoie for his final marathon between 12pm and 2pm!

We wish Vincent good luck and thank him for his loyal support. We also invite you to support his sporting (and slightly crazy) efforts with his online fund!

14 years after our honorary member Zinédine Zidane, Adrien Bonvalot is also preparing to climb Mont-Blanc in aid of ELA.

A sporting and human challenge

This nature lover is embarking on an incredible challenge: to climb the Roof of Europe to an altitude of almost 4,810 meters! He has been preparing for nine months to complete the 19km route, which takes in the technically challenging Innominata ridge. Thibault Florant, a mountain guide who has accompanied Adrien for many years, will accompany him on his 3-day adventure.

A charity auction

At the end of this feat, the timepiece (a term given today to watches of high quality and precision) made available to him for the climb will be auctioned off. The proceeds will be donated to the fight against leukodystrophy. The watch was kindly donated by Humbert-Droz.

We would like to thank Adrien for his support of ELA, and wish him all the best for the future!

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.

On Saturday 29 October, Cambrai Futsal will host Variétés Club de France for a charity match in aid of ELA.

This afternoon of sport and solidarity is an initiative of Salah Berkani, Samuel Touret, Leila Belaskri and Thomas Rolland. Local partners are also mobilised, such as Auchan Cambrai, Decathlon and EPIDE (Public Defence Integration Institution), which are responsible for pre-selling tickets, supplying the 25 volunteers mobilised, as well as the equipment necessary for the smooth running of the match. The city of Cambrai also provides transport for the Variétés Club de France from Paris to Cambrai.

An ELA family will be on hand to raise awareness of the association’s fight and to thank all the volunteers involved in the organisation of this match.

Tickets are already available at the Auchan Cambrai ticket office, at the price of 7€. All proceeds from the evening will be donated to the fight against leukodystrophies.

We would like to warmly thank all the stakeholders of this beautiful project for their mobilization!

Last June, the Grésivaudan Sports Association organised its traditional solidarity football tournament in aid of ELA at the Aimé Marcieu stadium in Le Cheylas (38).

16 highly motivated U12 and U13 teams competed in front of a large audience. Alongside the tournament, new activities enlivened the two days of competition: a demonstration by the department’s canine brigade, inflatable structures, a hip-hop show by the Nextape group, etc

Joseph, who suffers from leukodystrophy, and his parents had the pleasure of sharing a very good sporting and solidarity moment.

A big thank you to all the organisers, and in particular to Amina Ghafir, president of AS Grésivaudan, and to all the volunteers for their faithful support.

L’association “Rieumes course à pied” toujours au rendez-vous !

Pour la deuxième année consécutive et en raison de la crise sanitaire liée à la Covid-19, la “Boucle rieumoise”, traditionnelle course solidaire organisée au profit d’ELA par l’association “Rieumes course à pied”, a été annulée.

Pour autant, toute l’équipe, et notamment Iain Dawson, nouvellement nommé président et qui succède à notre fidèle sympathisant Jean-Jacques Joaniquet, ont tenu à poursuivre leur engagement auprès d’ELA en organisant, comme l’année dernière, un appel aux dons à travers la presse et les réseaux sociaux. Pierre, atteint de leucodystrophie, a ainsi pu recevoir 4 410 € lors de la remise de chèque symbolique organisée en comité restreint.

Un grand merci à l’ensemble des bénévoles et des donateurs pour leur fidèle soutien. 

Rendez-vous le 10 octobre pour la 10^e édition de la “Boucle rieumoise” !