Author Archive

Sadie McCann Fund: Grants for Aicardi Families

March 20th, 2020 by Carrie Paup

Families can apply for $500 grant from the Sadie McCann Fund in response to the COVID-19 Pandemic.

Please read a letter from Dr. Van den Veyver regarding the cancellation of our 2020 Conference.

2020 Family Conference Cancelled

February 28th, 2018 by Carrie Paup

Out of an abundance of caution, the AS Foundation has cancelled the Las Vegas conference 2020.

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 Announced

August 1st, 2017 by Carrie Paup

  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 […]