Sadie McCann Fund

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 […]

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Update on Aicardi Syndrome Research at Baylor

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, […]

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Aicardi Foundation receives funding from REN (Rare Epilepsy Network)

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 […]

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Meet Margaret Storey

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.

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A letter of THANKS

The Aicardi Syndrome Foundation is incredibly grateful for the research and commitment Dr. Ignatia B. Van den Veyver and her team continue to provide.

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