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Torrox Organizes 24-Hour Charity Run for Baby with Ultra-Rare Disease

The initiative aims to raise funds for the treatment of an infant from Frigiliana suffering from Nedamss syndrome.

Generic image of running shoes on a promenade.
IA

Generic image of running shoes on a promenade.

This Saturday, Torrox will be the setting for a 24-hour charity run to raise funds for a baby from Frigiliana suffering from an ultra-rare disease, aiming to finance his treatment.

The event, organized by the Club Atletismo Torrox and Torrox Run Club, in collaboration with the Torrox City Council, will run continuously from 10:00 AM on Saturday until 10:00 AM on Sunday, April 26.
The route, approximately four kilometers long, will take place along the promenade. Participants can join at any time, run one or more laps, rest, and rejoin, ensuring that at least one person is always on the course.

"Each participant can be part of the race whenever suits them best. Everything is based on donations; there is no economic interest, as the sole objective is to help the family."

a spokesperson for Torrox Run Club
Registration requires a minimum donation of 5 euros, which includes a bib number to participate and be eligible for raffles and additional activities. Additionally, a solidarity tent will be set up next to the lighthouse for those who wish to contribute without running.
The eight-month-old baby suffers from Nedamss syndrome (IRF2BPL), a genetic pathology that affects neurological development and can lead to the progressive loss of abilities such as speech or mobility, as well as epileptic episodes. The proceeds will be entirely dedicated to his care and an experimental gene therapy in the United States, considered the main hope to halt the disease's progression.