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Get Informed“In 1993 when our eleven month old son Charlie had his first seizures and my then friend and attorney learned of our fear and agony, he never said a word. That wouldn’t be so remarkable were it not for the fact that he, too, had a son with a seizure disorder. You see, he was embarrassed. He didn’t want the stigma. It wasn’t worth it to him to ‘out’ his son in order to pass on information and comfort. He was merely proliferating a tradition of silence and misinformation that was centuries old. Today, thanks to organizations like The American Epilepsy Outreach Foundation, parent-organized groups around the world are creating a revolution. It is hard to find a support group or a research project or an information center that isn’t parent initiated. Instead of cowering, the hurt fostered from watching the suffering of our children is being channeled into help for others. We still have a long way to go. It is estimated that between two and three million Americans suffer from epilepsy and there are 50,000 epilepsy related deaths annually. So I would like to thank The American Epilepsy Outreach Foundation, and Emmett Leyden and his family for all the good they are doing today and for all those who will benefit from their work in the future.” Jim Abrahams
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Epilepsy is the most common neurological disorder in children, often causing damage to the developing brain and causing premature loss of life. Sadly, public perception is that epilepsy is a benign condition that is easily treated, and this is why research efforts have lagged far behind where they should be, given the prevalence and devastation of epilepsy. I applaud the Leyden family for their courage in sharing their personal story. I know that by doing so they will help to raise awareness of the millions of other families who are also desperately seeking answers for their children. Susan Axelrod - Founder of C.U.R.E. |