A check in the amount of $8,000 was received from the REN (Rare Epilepsy Network). The Foundation would like to thank all of the Aicardi families who have taken the time to participate in the REN registry. This funding was made possible, because of family participation, as well as the hard work & dedication of […]
We would like to share with you that our paper titled “Independent variant analysis of TEAD1 and OCEL1 in 38 Aicardi syndrome patients” is now published in the journal Molecular Genetics & Genomic Medicine (MGGM). The article will be officially included in the March 10th 2017 issue of MGGM, but it can already be accessed […]
Please read below about a great new resource available to families with a child with Aicardi Syndrome. You can also read more about the Sadie McCann Fund on their website: https://www.sadiemccannfund.org/ Sadie Elizabeth McCann was born on April 29, 2010 to parents Adin and Cathy McCann and was diagnosed with Aicardi Syndrome at six weeks […]
The progress report below summarizes what we have pursued over the last year. Progress report: High-throughput next-generation sequencing approaches: Progress: Over the last six months, we have been very fortunate that we were able to submit samples for sequencing to the NIH-funded Baylor-Hopkins Centers for Mendelian Genomics (BHCMG) program [http://bhcmg.org/]. The CMG is a cooperative, […]
A check in the amount of $9,000 was received from the REN (Rare Epilepsy Network). The Foundation would like to thank all of the Aicardi families who have taken the time to participate in the REN registry. This funding was made possible, because of family participation, as well as the hard work & dedication of […]
Join us for the 2016 Aicardi Conference in Colorado Springs next year! Thank you for everyone who voted!
Congratulations to Aicardi mom, Margaret Storey, who received the Hero Award for Inspirational Commitment from the Epilepsy Foundation of Greater Chicago at their annual gala on February 21.
Please have your family join the REN Registry as it is patient-driven & patient-centered! Participation is the key to make this successful and useful for all families!