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.
