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The Myelin Project

P.O. Box 39,
Pacific Palisades,
CA  90272-0039

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Mission Statement:

The Myelin Project aims to end human suffering from demyelinating diseases.

The Myelin Project was established in 1989 by Augusto and Michaela Odone with the goal of accelerating research on myelin repair. Their only child Lorenzo was afflicted with adrenoleukodystrophy (ALD). Although not medical doctors, the Odones developed a treatment, 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.  

A multinational gathering of families joined the Odones in their efforts. Stricken by one or another of the demyelinating diseases, they refused to be passive victims by encouraging cooperation among researchers, and by providing scientists with funding for translational and clinical research. While The Myelin Project has taken the conventional steps to advance remyelination research, we have taken the unconventional step of encouraging direct interaction between families and scientists, we continuously remind the scientists that there are people waiting for effective treatments. Research has been focused on efforts to understand mechanisms of myelin repair, with a view to discovering therapies that will permit restoration of damaged myelin. It is anticipated that these will permit at least partial restoration of function in patients suffering from myelin loss.

Demyelinating diseases affect more than two million people worldwide.

In 2010, The Myelin Project headquarters moved from its former location in Amarillo, TX to its new location in Pacific Palisades, CA.  We currently have branches in Germany, Italy, and the United Kingdom as well as an active partnership with the European Leukodystrophy Association, headquartered in France.  U.S. Project President, Patti Chapman and all members of the Board receive no compensation.  In Britain, Frances Germany, and Italy 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. Myelin can be destroyed by hereditary neurodegenerative disorders such as the  leukodystrophies, and by acquired diseases such as multiple sclerosis.  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.

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