The Myelin Project - (800) 869-3546

We are a 501(c)3 non-profit focused on advancing research, advocacy and patient support for adrenoleukodystrophy (ALD).

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, 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.

Tags: Educational Organization,Medical Research