What Should You Know About Aicardi Syndrome?
Lace up your hiking shoes and head out to your favorite trail this August. But, before you do, log onto http://www.aicardisyndrome.org/hikeathon/. There you can join a growing number of people walking to assist families struck by the little-known disease, Aicardi Syndrome. Named after the man who discovered this disease in 1965, French Neurologist, Dr. Jean Aicardi, there are only 300 to 500 known cases of Aicardi Syndrome worldwide. Though researches believe a damaged X chromosome is the culprit, the cause of Aicardi Syndrome is not definitively known. Like most people who know about Aicardi Syndrome, I discovered Aicardi Syndrome because it hit close to home: a friend’s infant was diagnosed. Upon talking to people, I discovered that, amazingly, another friend's daughter also lived with Aicardi Syndrome. So, 300 to 500 isn’t such a minute statistic after all. For this reason, I’ve joined the small number of people striving to educate the public on Aicardi Syndrome.
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