Author Archive
2023 Aicardi Syndrome Family Conference to be held in Denver Colorado
April 4th, 2023 by Carrie Paup
Information about the 2023 Aicardi Syndrome Family Conference The conference is a 3-day opportunity to meet, connect with, and learn from other families; to hear speakers discussing topics of specific interest to our group; and to have fun! All families of children with Aicardi Syndrome are welcome to attend. Conference Expenses: The Aicardi Syndrome Foundation […]
Jupiter Law Center to hold annual Halloween fundraiser for Aicardi Syndrome
September 7th, 2022 by Carrie Paup
Event being held on October 22, 2022 More details coming soon! To make a tax-deductible donation to the Foundation, please call the Jupiter Law Center at 561-744-4600 or mail a check payable to Aicardi Syndrome Foundation, care of Jupiter Law Center, 1102 W. Indiantown Road, Suite 7, Jupiter, FL, 33458-6813.
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.
Sadie McCann Fund: Grants for children with Aicardi Syndrome
August 22nd, 2017 by Carrie Paup
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 Smile Program: Sign up today to benefit the Aicardi Foundation
June 12th, 2017 by Carrie Paup
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
Aicardi Syndrome Foundation receives funding from the REN (Rare Epilepsy Network)
March 15th, 2017 by Carrie Paup
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 […]
Baylor publishes new journal article on Aicardi Syndrome
March 2nd, 2017 by Carrie Paup
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 […]