The Myelin Project: An Overview

The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and by acquired diseases such as multiple sclerosis. All together, demyelinating diseases affect more than two million people worldwide.

The film tells the real-life story of Lorenzo Odone and his parents, Augusto and Michaela, inventors of the oil and founders of The Myelin Project.

Behind the Myelin Project is a multinational gathering of families struck by one demyelinating disease or another. Refusing to accept the conventional view that science cannot be hurried, they resolved to advance the moment when myelin could be restored. They have done this by creating a framework in which researchers can cooperate effectively, by giving scientists adequate, prompt financing and by continuously interacting with them.

To counter researchers' endemic conservative stance, we at The Myelin Project constantly remind them of two aphorisms: “fortune favors the brave,” and “you never know until you try.” The founders of the Project are Augusto Odone and his late wife, Michaela Odone. Their only child Lorenzo is afflicted with adrenoleukodystrophy (ALD). Although not medical doctors, the Odones developed a therapy, now adopted on both sides of the Atlantic, that reverses the biochemical defect of ALD. The story of the Odones' struggle against ALD was dramatized in the 1992 Universal Studios release Lorenzo's Oil, starring Nick Nolte and Susan Sarandon.