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...
In this issue, Foundation President Adam Gumson shares a message of gratitude, recognizes the volunteers helping prepare for the 2027 Family Conference, and highlights progress on the Foundation’s key initiatives, including family support, research, fundraising, and outreach. We also recognize Aicardi Syndrome Awareness Day on November 8, honoring the 100th anniversary of Dr. Jean Aicardi’s […]
The Aicardi Syndrome Foundation is featured in RARE Revolution Magazine in an article exploring the ongoing search for the genetic cause of Aicardi syndrome. The feature includes insights from Dr. Igna Van den Veyver of Baylor College of Medicine and Texas Children’s Hospital, alongside perspectives from Foundation President Adam Gumson. Together, they discuss advances in […]
The Aicardi Syndrome Foundation’s Fall 2026 newsletter shares “Breaking News”: Aicardi Syndrome is now on the SSA’s fast-track disability list. Plus, spend “A Day in the Life” with Joanna Hodge and learn about the updated 2008 U.S. prevalence study. Click here to download the newsletter as a PDF: Aicardi News Fall Edition-Vol3 Issue1.pdf