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December 8, 2017
When it comes to Infantile Spasms, families face difficult choices
Human Interest, Infantile Spasms

When Mickie was born, she was a beautiful, normal, healthy baby. Then she began having seizures at the age of three months. Soon thereafter, she was diagnosed with intractable epilepsy and infantile spasms (IS), and her parents were forced to make agonizing decisions about her care. 

After eight different medications failed to stop Mickie's seizures, physicians suggested that a major surgery might be her only hope. Without it, her seizures could eventually prove debilitating or even fatal. The day before Mickie's first birthday, she underwent brain surgery and has not had a seizure since. Today Mickie is active and healthy but still recovering from the damage inflicted by epilepsy. She undergoes regular therapies to improve her speech and must take anti-seizure medication every day.

Mickie's quality of life improved with surgery, but for far too many children with infantile spasms, these results are not possible. That is why we hope you consider CURE during your annual holiday giving so that we can continue to drive research forward.

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CURE's Infantile Spasms (IS) Initiative has advanced disease-modifying therapies for kids like Mickie by focusing on the underlying pathology of this syndrome. In a groundbreaking, multidisciplinary "team science" approach, CURE awarded $4.2 million in grants to investigators to advance cutting-edge research to find a cure for IS. This collaborative, milestone-driven project examined potential therapeutic pathways and biomarkers in order to improve treatment options and decrease lifelong disabilities that often result from IS. With additional resources we can build on the important work done by our preeminent investigators. 

This year, as you consider your annual holiday giving, we hope you will consider CURE and its impact on kids like Mickie and the hundreds of thousands of other children with epilepsy. 

Our work inspires and gives meaning to parents of children with IS. "CURE gives children their best chance," Mickie's mother, Kristie, says. "It offers hope for families with intractable epilepsies, and pulls all the parts together. CURE is a vital link in the chain that connects mothers like me to the leading-edge research that is pushing us closer to a cure."

Your ongoing support will help ensure that the finest scientific minds continue working together to move us closer to our ultimate goal: no seizures, no side effects, and a cure for epilepsy. 

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Mickie's mother, Kristie Griess, considers Mickie's journey the definition of a miracle and founded her own nonprofit - Mickie's Miracles - aimed at creating awareness, education, and advocacy around pediatric epilepsy. She is also a passionate supporter of CURE.

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