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- Funding Research for Myelin Repair since 1989 -

The Myelin Project is a multinational medical research non-profit organization aimed at funding research to find a cure for demyelinating diseases.  Founded in 1989 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.  

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.

What is Myelin?

Myelin is the insulating sheath surrounding nerve cells.  It is the white matter coating our nerves, enabling them to conduct impuxlses between the brain and other parts of the body. It consists of a layer of proteins packed between two layers of lipids. Myelin is produced by specialized cells: oligodendrocytes in the central nervous system, and Schwann cells in the peripheral nervous system. Myelin sheaths wrap themselves around axons, the threadlike extensions of neurons that make up nerve fibers. Each oligodendrocyte can myelinate several axons.  

Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and also acquired by diseases such as multiple sclerosis.  There are no known cures for any of the leukodystrophies which affect more than two million people worldwide.  

-See diagram on right side of page-