“Too many patients suffering from rare diseases remain today without any therapeutic response. Particularly when it comes to children, we cannot remain indifferent to their distress and that of their families.
This is the case with epileptic and developmental encephalopathy caused by a mutation in the KCNT1 gene that affects baby Isaure.
I am happy and proud to support the family of this child and the Endowment Fund “A spark for Isaure … and genetic research” that they have created.
This endowment fund aims to advance clinical research on this orphan disease to improve knowledge of its mechanisms which will enable new experimental treatments, and thus to give a chance of survival to all children affected by this pathology in the world. Teams of researchers on both sides of the Atlantic are already at work and I know the high quality of the members of the scientific council of this endowment fund.
We must mobilize to, very quickly, finance this work and create the spark that these children need so much. Join us!”
President of Institut Mérieux