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Fifteen years ago, Tracy Dixon-Salazar had never heard of epilepsy. Today, she has a Ph.D. in Neurobiology and works at an epilepsy research lab at the University of California-San Diego.
Her achievement and accomplishment came at a price, however - Tracy's daughter, Savannah, suffers from Lennox-Gastaut Syndrome, a childhood epilepsy. What began as an effort to read and learn more of her daughter's condition became a pursuit of a college degree, then graduate school.
"To this day, we have no idea why Savannah went from being a healthy, developing little girl to having all her potential robbed from her by uncontrollable seizures," Tracy said. "No medical test has ever yielded a cause for her seizures, and as her Mother, this torments me. I will never give up looking, though, and I have committed my life to helping future children who suffer from this have a brighter future."
In addition to expanding her knowledge regarding her daughter's condition and treatment, Tracy said another benefit of her education is being able to talk with doctors about causes and treatments of epilepsy.
"We have had some good doctors over the years who listen, answer our questions, and anticipate questions we might have," Tracy said. "They also express care and concern for our family. Doctors are very helpful in running tests and managing medications, but most of what I have learned about epilepsy I had to learn on my own."
In her dual role as an epilepsy researcher and a mother to a child with epilepsy, Tracy knows what research is vital, but she also knows what needs to be done beyond research - hence, her extensive advocacy work. She has served as a Research Review Board Member for Citizens United for Research in Epilepsy (CURE), and is also active with the Epilepsy Foundation of San Diego, the Epilepsy Support Network of Orange County, and the Lennox-Gastaut Syndrome Foundation.
"As an organization, we do a good job at providing the basic information to those new to the world of epilepsy - what it is, what defines a seizure, and what treatments are available - but we have to do better," Tracy said. "Every day each of these organizations work to dispel misinformation, to educate the public about epilepsy and seizures, and to raise money to find a cure."
Nominated by Citizens United for Research in Epilepsy to serve as a consumer peer reviewer for epilepsy research grants submitted to the 2010 Peer Reviewed Medical Research Program, Tracy drew on her experiences as a mother, researcher, and grants reviewer, and found herself humbled by the experience.
"I am in awe at the way the program incorporates and values the consumer opinion," Tracy said. "I will do my best to represent the view of those affected by epilepsy, and I am grateful for the opportunity to relay my experiences to the CDMRP."
Last updated Thursday, May 26, 2022