“Une Etincelle pour Isaure” is an endowment fund that was created in April 2021 ( declaration to the OJ on 03/18/2021, Publication number: 20210015 ) with the aim of directly and indirectly supporting scientific research projects and their clinical applications for the treatment of epilepsy syndromes linked to the KCNT1 gene. This pathology affects dozens of patients in France and a few thousands around the world.

At present, medical research mobilizes both French and international teams whose work requires significant funding.

The purpose of the Fund is to intervene both in the field of fundamental research and to allow access to care for target patients suffering from the pathology.

As part of achieving its purpose, the Fund:

– secures the advice of a Scientific Advisory Board for all medical questions;

– participates in the financing of structures or people or projects of general interest in the field of scientific research, in particular on pathologies relating to the KCNT1 gene;

– participates in the financing in France and / or abroad of the cost of clinical trials for French children suffering from epilepsy syndromes linked to the KCNT1 gene.

The board of directors is made up of:

  • Chairman: Frédéric de PARISOT (CEO)
  • Vice-President: Henri-Charles THÉLU (lawyer)
  • Treasurer: Nicolas MÉRIGOT (CEO)
  • Secretary: Bertrand FAUVETTE (CEO)