Leah + Jack’s PDE Journey

Leah Trotter shares the story of her son Jack and their family’s journey with pyridoxine-dependent epilepsy, from the early days of diagnosis through the challenges, changes, and milestones that have followed.

She discusses Jack’s evolving feelings about his diagnosis, the role of laboratory testing, and her work advocating for rare disease families through organizations including Global Genes, EveryLife Foundation, and GeneDx.

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Cure PDE Family Retreats

Our Family Retreats bring families from across the United States and Canada together for connection, education, research updates, and time with others who understand the PDE journey.

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Cure PDE brings families, researchers, clinicians, and advocates together throughout the year through in-person gatherings and educational conversations.

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