About the Myelin Project
The Myelin Project is an international grassroots organization whose mission is to accelerate medical 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.
The Myelin Project headquarters are in the Washington , D.C. , metropolitan area, the location of NIH and other sophisticated research facilities, and one of the world's principal centers for medical research. The Myelin Project includes branches in Britain , France , Germany , Italy , Switzerland , and Dubai . Neither Project president Augusto Odone nor the other members of the Board receive compensation. In Britain , France , Germany , and Dubai , the Project officers are also volunteers.
Inspired by the great projects of the past (e.g., Project Apollo) which used 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 Institut 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.
As of March 2004, The Myelin Project has financed 36 experiments for a total of approximately $5 million. The year 2001 marked a turning point for The Myelin Project, when Schwann cells were transplanted into the brain of an MS patient for the first time in medical history. Currently, several other promising research projects await our funding. In order to finance them, the Project needs increased resources.
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:
- Our administrative costs range from 11% to 16% of total receipts, depending on the year. We intend to continue to keep them within this range.
- Your donation will go toward financing practically oriented experiments conducted within the framework of a coherent overall plan, thus avoiding any dispersion or dilution effects.
Financing experiments is only one of the Project's features. As Dr. Ian Duncan, one of the Work Group's scientists, put it in an interview with People magazine, “The Myelin Project has given us more than money... it has given us inspiration... added a focus to our work and has provided us with a human context.”



