This association was born and wanted by the parents of Sofia, a beautiful girl affected by a rare genetic disease that belongs to a class of Tubulinopathies.
We want to dedicate this association to all those children and their families who have to cope with this rare disease on a dailly basis.
Sofia was born on 28th October 2015 and, about six months later, was officially diagnosed with the disease.
Thereafter, a long and insidious journey begins for her parents, Marta and Gabriele, who try support Sofia in her difficult path.
For the entire family, this is the beginning of a never-ending pilgrimage across the country and abroad, with the ultimate objective to find the best possible solutions to treat Sofia’s condition. This journey led the family to Como, Milan, Cannero Riviera, Naples and, finally, to Tel Aviv.
Through the progressive realisation of how important it is to provide continuous and effective support to families in the same situation, Marta and Gabriele, with a group of friends, decided to found this Association on 5thMarch 2018 .
The logo of this association is a turtle, with an eye in its shell. The eye represents the visual difficulties that affect these children. The underying message is of hope, that Sofia and all the children in the same situation may in the future evolve from beautiful slow-moving "turtles" to true fast-pacing runners.