Motherhood is one of the greatest experiences in a woman's life, but it comes with many challenges. These challenges only become greater when your child lives with a rare disease. Neuroscientist, geneticist, patient advocate, and Executive Director of the LGS Foundation Tracy Dixon-Salazar experienced this first hand when her daughter Savannah was diagnosed with a severe form of epilepsy called Lennox-Gastaut syndrome (LGS) at the age of 5. Desperate to learn more about her daughters condition and how to manage it, Tracy went back to college and took classes while her children were at school. After 12 years of studying, Tracy earned her PhD in Neurobiology and made it her mission to improve the lives of people living with LGS for future generations.
Join Joshua as he and Tracy discuss her experience as a caregiver, patient advocate, what a good patient registry looks like and of course all things real-world data. If you are a rare disease parent, caregiver, advocate or researcher, this episode is a must listen.
Learn more about Tracy's story and the LGS Foundation here
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