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Epilepsy becomes focus for Baylor College of Medicine donor

Debbie Fiorito, president and principal of 20K Group

Debbie Fiorito depends on her creativity for her livelihood. As the president and principal of 20K Group, she is responsible for executive level ideas, strategies and communications in the ever-changing media environment. So, when she began to lose time and feel not quite herself, she knew something had to be done.

“I’m a smart person who knows you shouldn’t ignore such signs,” said Fiorito who went for help to Baylor College of Medicine doctors to diagnose her problem and gradually put the pieces of her health back together with the latest knowledge and most effective medicines.

Debbie Fiorito’s work with Baylor doctors started with Jeffrey Steinbauer, M.D., professor, Department of Family and Community Medicine, who is her general physician and an experienced clinician. He suspected seizures and referred her to the Baylor Comprehensive Epilepsy Center. She came under the care of Alica Goldman, M.D., Ph.D., assistant professor, Department of Neurology, who is an active, NIH-funded translational human genetic researcher who also specializes in epilepsy treatment.

“This changed my entire life,” said Fiorito of her illness that was later diagnosed as adult-onset epilepsy. Her family rallied around her to make the transition easier while she and Dr. Goldman worked to optimize her treatment. She moved her office closer to home and her daughter, Courtenay, agreed to join the business to help. All the while, husband Tom supported Debbie in her journey to reclaim the full life she always led.

“I started the long process of understanding my problem,” said Fiorito whose condition is very mild compared to some children and adults.

Now, she has become a local spokesperson for epilepsy, an advocate for other patients and a donor to Baylor College of Medicine research on Sudden Unexpected Death in Epilepsy (SUDEP), a deadly but potentially preventable epilepsy complication. Her personal interest in SUDEP research has been triggered by the discovery of the first SUDEP gene by Dr. Goldman and Jeffrey L. Noebels, M.D., Ph.D., the Cullen Trust for Health Care Endowed Chair, Professor, Department of Neurology at Baylor, and director of the Blue Bird Circle Developmental Neurogenetics Laboratory.

“The relationship between you and your doctor is so important when you deal with epilepsy,” Fiorito says. The sophisticated diagnostic studies must be complemented by chronicling your wellbeing on a daily basis. The physicians depend on this process to select and optimize your treatment, she adds.

“It’s important to find you are not alone,” said Fiorito who now believes her condition has a genetic link, the next step in research for the disease. She guesses that her father’s dementia may, in fact, have been caused by the same mild seizures she experienced.

“It’s important to know that every gift can make a difference, regardless of the level of contribution. A donor at any level can make a difference,” Fiorito said of her personal commitment to Baylor that included a gift to epilepsy research as well as past gifts to breast cancer and The Partnership, Baylor’s largest volunteer advocacy group.

The initial generosity of Debbie and Tom Fiorito was instrumental in the growth of the pioneering SUDEP research program at Baylor College of Medicine. Dr. Goldman’s research of the relationship between seizures and cardiac arrhythmias that may be associated with SUDEP and her development of a tissue donation program are funded by awards from the National Institute of Neurological Disorders and Stroke of the NIH. In addition, Dr. Noebels recently was awarded $1.4 million by the National Institute of Neurological Disorders and Stroke to organize a national research consortium to study sudden unexpected death in epilepsy – the leading cause of mortality in both children and adults with seizure disorders.