Marchez, Courez pour Alessia

From June 13 to July 12, 2026, runners and walkers are invited to participate in a virtual race or walk across France to support the "Dans les Yeux d’Alessia" association. The event offers three distance options: 5 kilometers, 10 kilometers, or participants can choose their own route length. This initiative aims to raise awareness about Alessia’s rare genetic disorder caused by a mutation on the GNAO1 gene.
Participants are encouraged to select a location and time that suits them best during this period. Whether you prefer an early morning jog in a serene park or an evening stroll along bustling city streets, your choice is entirely up to you. Share your experience with others by posting photos of yourself wearing the race bibs or sharing your times on social media.
In July 2026, which marks Alessia’s seventh birthday, supporters are invited to join in celebrating her spirit and resilience while raising funds for vital research into this rare condition that affects only about 350 people worldwide, including a handful of children in France. The GNAO1 mutation leads to epilepsy seizures, involuntary movements, axial hypotonia (low muscle tone), and psychomotor delays.
By participating in the event, you contribute directly to the association’s efforts to increase awareness of this rare disease and support ongoing research initiatives. Your involvement also helps fund projects aimed at promoting alternative and augmented communication methods for children like Alessia through conferences and workshops. Additionally, your participation supports Alessia's intensive therapy sessions and provides necessary equipment that may not be covered by standard healthcare provisions.
To learn more about the association’s work or to follow updates on this event, visit their Instagram page and Facebook profile. Your contribution will make a significant difference in the lives of children affected by rare genetic disorders like Alessia.
Join us as we come together to support Alessia and raise awareness for her condition across France.