On 21 and 22 March, ELA members gathered at the Pullman Paris Centre Bercy Hotel for the association’s 35th General Assembly weekend.
On Saturday afternoon, after being welcomed by the ELA team and settling into their rooms, the families enjoyed the sightseeing and activities on offer in the capital, the facilities provided by the hotel, and, of course, the company of their friends from ELA. The weekend began with the first workshops. People living with leukodystrophy were able to come together to discuss their emotional and sexual lives and find out which healthcare professionals to contact depending on their needs, whilst others met with the Awareness and Development Team to learn about the association’s campaigns and how they could get involved.
The patients’ relatives and grieving families were then able to take part in two support groups led by our psychologist, Marie-Claude Blondeau. These opportunities for discussion are precious for the families, who can share their experiences in a supportive environment with people who understand them.
Throughout the weekend, families were able to have their photos taken in front of an ELA-themed background using the photo booth, allowing them to take home a souvenir of these shared moments.
Our sponsors – Shemss Audat, Aurélie Bargème, Caroline Bourg, Diane Dassigny, Lionel Erdogan, Léa François, Cécilia Hornus, Emma Kabouche, Julien Mertine and Merwan Rim – joined the families for a warm and friendly evening of reunion! After dinner, the atmosphere really heated up on the dance floor with Merwan Rim on the decks! Everyone said their goodbyes to the tune of a cover of “L’envie d’aimer” performed by Merwan Rim.
On Sunday morning, President Crystelle Cottart opened the 35th ELA General Assembly.
The General Meeting considered the 2025 annual reports and accounts:
The management report was presented by Crystelle Cottart.
The activity report was presented by the Director, Nadia Cerise.
The 2025 accounts were presented by the Treasurer, Pascal Noirot. The auditor, Isabelle Chaillot, certified the accounts and highlighted the sound financial management of the association during these times of economic uncertainty for the voluntary sector.
Pascal Noirot then presented the preliminary budget for 2026.
All the resolutions were adopted unanimously.
Finally, members voted by secret ballot to re-elect the outgoing third of the council. Chantal Dequen, Marina Filiol de Raimond, Jean-Marc Di-Rado and Philippe Levillain were re-elected for a three-year term, and Stéphanie Dowkiw joined the council.
