Information about the 2018 Aicardi Syndrome Family Conference The conference is a 3-day opportunity to meet and learn from other families and to attend sessions with speakers discussing topics of specific interest to our group. But most of all, we come together to have fun! All families of children with Aicardi Syndrome (AS) are welcome […]
Only a few more weeks until the next grant deadline for The Sadie McCann Fund. www.sadiemccannfund.org Grants of up to $1,000 are available for any family whose child has been diagnosed with Aicardi Syndrome. Applicant(s) must demonstrate financial need (see website) and the grant funds must be used for the direct benefit of the affected […]
2018 AICARDI SYNDROME FAMILY CONFERENCE Thursday, July 12, 2018 until Sunday, July 15, 2018 in Bloomington, MN Double Tree by Hilton Bloomington Minneapolis South 7800 Normandale Blvd, Bloomington, Minnesota 55439 More details about the conference will be posted here soon. We look forward to seeing everyone next summer! If you have questions about the […]
Amazon has a great program that will donate a percent of your Amazon.com purchases to the Aicardi Syndrome Foundation, at no extra cost to you! In order to sign up for this program, you can follow the simple instructions listed here: https://www.amazon.com/gp/help/customer/display.html?nodeId=201365360
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, […]