On Tuesday 18 March, ELA had the pleasure of bringing together partners and patrons to discuss the theme of commitment at the Maison de l’Alsace, whom we warmly thank for the free use of their sublime reception areas.
Hosted by Sandrine Quétier, this evening event was an opportunity to gather together to discuss our actions and projects, with round tables bringing together families, researchers, sponsors and partners involved with ELA.
President Crystelle Cottart kicked off the evening with these words: “It is with great joy and deep gratitude that I welcome you to this special “Engagés avec ELA” evening. Your presence here is a testament to your unwavering commitment to our association and to the values we share. […] The challenges are immense and we are convinced that with your support, we will be able to meet them. Thank you all for being here tonight. And for those who are discovering us, I hope that we will succeed in making you want to join the most wonderful team in the world: the one that wants to beat the disease.”
Progress for families and researchers
The first round table discussion looked back at ELA’s actions in support of families affected by the disease and medical research.
In front of a very moved audience, Florence Schlageter, mother of two little girls with leukodystrophy, shared her story and the difficulties of daily life. She spoke of her commitment to raising awareness of leukodystrophies and the importance of facilitating access to the innovative treatments that her daughter Coline was lucky enough to benefit from, and which must now be extended to every sick child.
Based on this testimony, Nadia Cerise, Director, presented the support offered by the association in terms of information and moral, social and financial support.
Dr. Françoise Piguet, Head of the Genov Innovation Unit at the Brain Institute, gave an update on the progress of research into gene therapy for Coline’s leukodystrophy and presented a treatment involving cell encapsulation that is currently being evaluated.
Guy Alba, President of ELA International, then mentioned the crucial importance of birth screening for adrenoleukodystrophy (ALD) and metachromatic leukodystrophy (MLD), for which there is an authorised treatment on the European market. The generalisation of screening for all infants in the European Union would make it possible to treat children before the first symptoms appear and save many lives. ELA International, together with all ELA branches, is lobbying the health authorities to put an end to the policy of saving the second child with the first.
Mobilised and supportive partners
ELA owes these advances to the commitment of its partners and patrons. The latter then demonstrated their commitment to ELA during the second round table discussion.
Melissa Saint-Fort, CSR Director of the Groupe TF1, spoke about their long-standing partnership with charity shows benefitting ELA, but also about the enthusiasm of the employees for the “Wear your trainers at work” campaign.
On this subject, Eric Pellerin, Managing Director of Mitsubishi Electric Europe, which has been involved with ELA for 22 years, emphasised the opportunity to create cohesion within a company and the importance of including all teams in this collective commitment.
Jacques Bungert returned to the meaning of his commitment to ELA with the financial support provided for 22 years by The Amundi Evian Championship, of which he is Vice-President, and as an ambassador to the business world.
Pascal Gentil, ELA sponsor and currently head of CSR at the Aéroports de Paris Group, concluded on the essential role of companies in the voluntary sector. He donned his cap as a double Olympic taekwondo medallist to remind us of the virtues of sport in the workplace.
Numerous contacts were made during this event to expand the network of partners involved with ELA in order to advance research and provide families with all the support they need.
Thank you to all the companies that took part in this event, to our speakers, to Charlotte Formhals and her team at the Maison de l’Alsace for their hospitality, and to our sponsors for their loyal support: Frédéric Bouraly, Pascal Gentil, Cécilia Hornus, Julien Mertine, Kylian Portal, Sandrine Quétier and Thierry Ragueneau.
