About the Aicardi Syndrome Foundation
The Aicardi Syndrome Foundation was incorporated in 1991 as a (501c3) non-profit organization. The Foundation is staffed by volunteers and is funded by private donations and various fundraising events. The Foundation is dedicated to provide assistance to those affected and their families. As our family network grows the Foundation strives to continue to provide for our girls and their increasing needs. Since its incorporation in 1991 the Foundation has done the following:
- Provides the ground work for the Aicardi syndrome website linking our families worldwide.
- Sponsors the biennial Aicardi Syndrome Family Conference, giving a unique opportunity for families to learn about Aicardi syndrome through workshops, seminars and discussions of topics of interest.
- Contributes to ongoing research of Aicardi syndrome at Baylor University, Texas Children’s Hospital and The University of California, San Francisco.
- Hosts Aicardi Syndrome’s Symposium for researchers and scientists allowing collaboration on identifying the Aicardi gene. (Our first symposium was October 2013 and was met with much success.)