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.

We believe that every child deserves the chance that Jorie had—the chance to not just survive, but to thrive through science.

Neon sign reading 'The Jorie Effect' with a pink and purple butterfly illustration on a black background.