Seizures and Study: One Mother’s Journey to Cure Lennox-Gastaut Syndrome

How Tracy Dixon-Salazar, PhD, the executive director of the LGS Foundation, went from a new mother to a neuroscientist, and her decades-long quest to improve the lives of patients like her daughter, Savannah.

Many who make the decision to enter the medical science field are often driven by a desire to help others. Physicians take the Hippocratic Oath and swear to treat the ill and do no harm, and researchers are, many times, motivated by this desire to make key discoveries, both large and small. But for some, the compelling force for their career choice is influenced by a far more personal connection: family.

There are hundreds of stories of clinicians who treat patients and study diseases that have directly affected those they love. Losing a parent or sibling to a disease or being part of a loved one’s journey with it can provide a lifetime’s worth of motivation to change an outcome or improve quality of life for others dealing with the same condition. The emotions associated with that experience can be challenging to describe in words, and for some, like Tracy Dixon-Salazar, PhD, there are perhaps no words to accurately match those feelings. “I honestly was just kind of lost. It was devastating. There was nothing I could do,” she told NeurologyLive®.

Now, Dixon-Salazar is an accomplished neuroscientist and geneticist and patient advocate, who works as the executive director of the Lennox-Gastaut Syndrome (LGS) Foundation. Founded in 2008 by Christina SanInocencio, PhD, CPH, CNP, in just a few short years, the foundation has grown into a giant of the space, working in a variety of ways to improve the lives of patients with LGS, a rare epileptic encephalopathy that affects 0.1 to 0.28 per 100,000 individuals. Under the leadership of Dixon-Salazar and others, in 2021 alone, the foundation raised more than $60,000 at its annual Walk ‘n’ Wheel event.

Although the vision for her life is clear now, in 1995, that may not have been the case. But, unbeknownst to her at the time, Dixon-Salazar was on the brink of a massive change that would alter her and her family’s path forever.

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