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December 13, 2017
Isaiah's story inspires us to do more
Human Interest, Genetics

"I have never felt so powerless as when I watched Isaiah's first seizure."
--C. Renzi Stone, Isaiah's father

Isaiah had his first seizure when he was just four months old. For ten excruciating minutes, his father cradled Isaiah's rigid body as his eyes fluttered to the back of his head and his legs jerked uncontrollably.

It soon became clear that Isaiah, like one-third of epilepsy patients, was unresponsive to current treatments. On the 333rd day of Isaiah's life, he had a fatal seizure and died.

At the time of his passing in 2010, there was no known cause for Isaiah's epilepsy. However, last December, his parents received a call from his neurologist. A periodic re-screening by the lab that conducted Isaiah's original genetic testing found the faulty gene. Isaiah's had Dravet Syndrome, a rare, catastrophic form of genetic epilepsy that starts in the first year of life and is characterized by frequent, prolonged seizures.

IsaiahIt's hard to say if Isaiah's story would have had a different outcome if he had received the diagnosis sooner. But thanks to CURE's Epilepsy Genetics Initiative (EGI), families may not have to wait years to find out the truth. Please help us continue these efforts with a year-end gift to CURE.

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EGI bridges the gap between patients, clinicians, and researchers by identifying new genetic causes and targeted therapies for epilepsy. Genetic data submitted to EGI is analyzed every six months, and findings are reported back to the person's doctor who may then be able to prescribe a more effective regimen of treatment.

To date, EGI has helped to identify a genetic cause for ten people living with epilepsy, two of those with mutations of a new gene identified through EGI's continual analysis of the data.

Isaiah's family hopes that you will give generously to CURE this holiday season and help sustain the vital, cutting-edge research that is poised to make a difference for so many families around the world who struggle with epilepsy.

Your support will help CURE move precision medicine forward, advancing breakthroughs to reach our goal of a cure for epilepsy.

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