You may recognize Dr. Tracy Dixon Salazar, Executive Director of LGS Foundation from her feature on the TODAY show, but her story was first shared on our television and social platform, Behind the Mystery.
Within these episodes, Tracy shares her daughter Savannah’s Lennox-Gastaut Syndrome journey, and how she advocates for those living with LGS. She also shares that Behind the Mystery is the reason why 66+ families have connected with the LGS Foundation.
Delve deeper into Tracy’s advocacy path and learn more about LGS as we go, Behind the Mystery:
- A Mom’s Journey to Understand Her Daughter’s Rare Disease
- Lennox-Gastaut Syndrome Foundation: Working Together to Find a Cure
- Celebrating Rare Disease Day 2023
Meet Tracy and Savannah: A Journey of Love and Resilience
Tracy Dixon-Salazar isn’t just a neuroscientist and geneticist; she’s also a devoted mother and patient advocate. Her daughter, Savannah, became the catalyst for Tracy’s pursuit of a Ph.D. Savannah’s battle with intractable seizures, which started at the tender age of 2, eventually evolved into LGS by the time she turned 5. Tracy’s academic journey, including her Ph.D. and postdoctoral work at UC, San Diego, became deeply intertwined with her quest to understand and alleviate her daughter’s suffering. Witnessing daily, unrelenting seizures in her child for 16 years fueled Tracy’s determination to uncover the underlying causes of Savannah’s illness. Eventually, her research led to the identification of a novel precision therapy that significantly improved Savannah’s quality of life. Tracy now serves as the Executive Director of the LGS Foundation, advocating for patients and families affected by this rare disorder.
Decoding Lennox-Gastaut Syndrome: Behind the Mystery
Lennox-Gastaut Syndrome (LGS) is a rare neurodevelopmental disorder that affects approximately 50,000 children and adults in the US and over 1 million worldwide. Unlike many conditions, LGS isn’t something one is born with; rather, it evolves over time in very young children who experience treatment-resistant seizures. The disorder, characterized by both seizures and significant developmental delay, falls under the umbrella of Developmental and Epileptic Encephalopathies.
Understanding LGS: What Sets It Apart?
What makes LGS particularly challenging is its unpredictable nature and resistance to conventional treatments. Patients experience a variety of seizure types, including tonic, atypical absence, atonic drop seizures, non-convulsive status epilepticus, generalized tonic-clonic, and myoclonic seizures. Diagnosis often involves recognizing seizure onset in early childhood, the presence of multiple seizure types, developmental delay, and abnormal brain wave patterns on EEG tests.
Navigating Treatment and Advocacy
Despite advances in medical science, there is currently no cure for LGS. Treatment options primarily target symptom management rather than addressing the underlying disease. However, the LGS Foundation is on a mission to improve the lives of individuals affected by LGS through research, family support programs, and education. Tracy Dixon Salazar emphasizes the need for a paradigm shift in the approach to LGS treatment, advocating for patient-driven research and a focus on disease-modifying therapies.
To learn more about rare and genetic diseases, visit TheBalancingAct.com/rare.
