Meet our CACNA1A Ambassador for Latin America:
Ignacio Santarelli
Ignacio and his family live in Buenos Aires, Argentina, and are the proud parents of Lucio, who received a CACNA1A diagnosis when he was 1 year old. Lucio’s unique variant presents with epilepsy, ataxia, hemiplegic migraines, and neurodevelopmental disorders.
Despite both being doctors, Ignacio and his wife had—and continue to have—to deal with the same challenges faced by everyone affected by a rare disease: uncertainty, limited knowledge, and feelings of isolation. Much of that changed in July 2026, when they attended their first CACNA1A conference in Houston. There, they learned how important it is to find support and community among others who are on a similar journey.
Today, Lucio attends kindergarten and has been achieving many big and little milestones with the support of his physical, occupational, and speech therapists. He continues to show great resilience and spirit every day.
Ignacio hopes that by raising awareness of CACNA1A in Latin America and connecting with other families, they can build a strong community and ensure that no family feels alone as they navigate this unique journey.