The challenge is national: the Rhone association FOXG1 offers people the opportunity to walk, run or cycle from 1er to November 30. The objective is above all to raise awareness about the genetic disease FOXG1, an extremely rare disease (less than a thousand cases recorded worldwide), and to raise funds for research. The process is simple, those who wish to participate will have to pay a minimum of five euros. “The goal is to do as many kilometers as possible, and each time we enter the kilometers on the platform. We can walk wherever we want,” emphasizes Stéphanie Reynier, president of the association.
1,000 euros have already been collected for 68 registrants. In 2022, during the first edition of the challenge, the association collected 1,000 euros in donations for around a hundred registrants.
Around fifty children affected by the disease in France
Only discovered since 2008, FOXG1 syndrome causes an intellectual and motor disability leading to extreme restriction of autonomy. “The association represents all the children in France affected by this disease, around fifty in France,” explains Stéphanie, herself the mother of Enzo, who suffers from the disease. Throughout the month of November, the association will publish videos “to raise awareness of the disease and hold competitions”. Donations will be donated to the American Research Foundation.
Registration is done at the following link: https://chronopuces.fr/foxg1-race-2023