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The Aicardi Syndrome Foundation

is a volunteer-based, non-profit organization dedicated to raising research funds and awareness for Aicardi syndrome. Registering your child with the Aicardi Syndrome Foundation allows your family to receive the latest research news, announcements and professional information as quickly as possible, as well as learning about ongoing research studies that your child may qualify for.

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.

In the News...

Hello Aicardi families! I am the new president of the Aicardi Syndrome Foundation ("ASF") and the first thing I want to do in my official capacity

We are very excited to announce that the 2025 Aicardi Syndrome Family Conference will be held at the Franklin Marriott Cool Springs in Franklin, TN on July 3, 2025 - July 6, 2025

Katie Seeright and her daughter Adeline share how they navigate the challenges of Aicardi Syndrome. This rare genetic disorder has brought them unexpected hardships, but with the help of their community, they’ve found a sense of home and hope. Learn more about their journey and how awareness can foster inclusivity and support for affected families. Read […]

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