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What is Myelin? Myelin is the insulating sheath surrounding nerve cells...
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Myelin is the insulating
sheath surrounding nerve cells…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 by acquired diseases such as multiple sclerosis.
Demyelinating diseases affect more than two million people worldwide.
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The Myelin Project and Lorenzo’s oil:
An Overview
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The Myelin Project was established in 1989 with the aim of funding research to find a cure for demyelinating diseases, such as the leukodystrophies which are genetic and multiple sclerosis which is acquired. The organization was founded by Augusto Odone and his late wife, Michaela. Their son, Lorenzo, suffers 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. |
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A multinational gathering of families joined the Odones in their efforts. Stricken by one or another of the demy elinating 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.




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