The Myelin Project

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The Myelin Project’s mission is to fund research to find a cure for demyelinating diseases such as the leukodystrophies which are genetic, and multiple sclerosis which is acquired. Founded by Augusto and  Michaela Odone for their son, Lorenzo, who suffered from X-linked adrenoleukodystrophy (X-ALD), the most common of the leukodystrophies, the story of the Odones’ struggle was dramatized in the film “Lorenzo’s Oil”, starring Nick Nolte and Susan Sarandon, released by Universal Studios in 1992.

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.

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.