In chaos theory, there’s a beautiful idea:
The flutter of a butterfly’s wings can set off a storm across the world.
For us, that butterfly was Jorie.
Jorie was born with DeSanto-Shinawi Syndrome, a rare neurodevelopmental disorder caused by a mutation in the WAC gene. With no known treatment, her diagnosis felt like a dead end—until it became the start of something extraordinary.
Through a groundbreaking collaboration with Dr. Whitney Thompson, M.D. M.Phil and Dr. Laura Lambert, PhD at Mayo Clinic, Jorie received an individualized therapy—an n=1 intervention designed just for her. Her WAC protein was restored to wild-type levels. Her story became a first, a possibility, and a beacon.
That singular moment of hope… became The Jorie Effect.
