Myelin Project 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.

The Myelin Project headquarters has recently been moved to Amarillo, Texas where it is housed on the Texas Tech University Health Sciences Center campus in the Laura W. Bush Womens Research Institute.   The Myelin Project has branches in Germany, Italy, Canada and the United Kingdom as well as an active partnership with the European Leukodystrophy Association, headquartered in France.  Project President, Margaret Weis, receives minimal compensation, members of the Board receive no compensation.  In Britain, Frances Germany, Italy and Canada Project Board members are also volunteers.

Using a motivated, time-conscious approach to attain specific goals, The Myelin Project has set up a Work Group from among the top international laboratories specializing in myelin repair. The Work Group includes researchers from Yale University and the University of Wisconsin at Madison in the U.S., the Istituto Superiore di Sanità and San Raffaele Scientific Institute in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, the Queen's University at Kingston in Canada, the University of Cambridge in the United Kingdom, and the Max-Planck-Institut in Germany.

The Myelin Project targets its funds toward clinically oriented experiments on the cutting edge of remyelination research. Basic research and studies directed toward the advancement of science for science's sake are excluded from Project financing.

We would be grateful if you would consider helping us. Supporting our work will not only be humanitarian, but will also make good business sense:

• We aim to keep our administrative costs to no more than 20% of total receipts, depending on the year.     

• Your donation will go toward financing practically oriented experiments conducted within the framework of a coherent overall plan.   All research proposals are reviewed in advance by our panel of leading experts in the field.

• We promise you that your donation will be well-spent, funding those proposals that are most likely to yield clinically relevant results.