The Aicardi Syndrome Foundation
Through the Foundation’s support and family involvement, we can make a difference in improving the lives of children with Aicardi syndrome. Please visit www.OurAicardiLife.org to meet some of children and read their journeys about living with Aicardi syndrome today.
Our Stories
Register your child and connect with other families living with Aicardi.
In Loving Memory
Tributes to those no longer with us
In the News...
Aicardi Awareness Day honors Dr. Jean Aicardi and unites families worldwide. Learn about Aicardi Syndrome, Emmy’s story, advocacy, and how to get involved.
This NBC News feature follows the Lazoen family, whose daughter lives with Aicardi syndrome — a rare neurological disorder. Despite her urgent medical needs, nearly every insurance claim gets contested, leaving the family to shoulder thousands in monthly costs. The story highlights the struggles many families face trying to get coverage for essential care. Struggling […]
The Fall 2025 Aicardi Newsletter features a message from President Adam Gumson on how conference sites are chosen and the importance of volunteers. It highlights Jenna’s Jig 2025, a 1950s-themed fundraiser that raised over $24,000, and shares the Bond family’s inspiring story of attending their first Aicardi Family Conference.