Although the International Day of Batten Disease is observed on June 9th, Arrasate hosted the main event today. Through a series of informational sessions organized by the Mara CLN 1 group, the primary goals were to raise awareness about the disease and show support for Mara San Jose, a resident of Arrasate affected by CLN1 Batten disease. "We have gathered to inform people about the disease and make it visible," explained Sulima Carabiases, who was involved in the organization.

Mara's family and friends received support from the solidarity motorcycle group Euskal Herriko Semeak from Hazparne. Citizens had the opportunity to ride motorcycles and, wearing the purple t-shirts of the Mara CLN 1 group, they spread solidarity throughout the town. The group members rode through the town on their motorcycles, giving children and adults the chance to enjoy this special day.

After the events, they shared a meal and created a fantastic atmosphere with the help of the Santamañako batucada, filling the day with music and joy.

Mara's loved ones expressed deep gratitude to all participants. They conveyed their thanks "for the solidarity, love, and support shown." Furthermore, they emphasized the importance of continuing research into rare diseases like Batten, hoping to find new treatments and solutions in the future.

Batten disease is a rare condition affecting the nervous system. The lack of an enzyme caused by this disease leads to the accumulation of cellular waste in the brain and retina, resulting in the loss of learning abilities and mobility.