The Myelin Project

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The Myelin Project was a 501(c)(3) nonprofit organization established in 1989 by Augusto Odone and his wife, Michaela and their friend Patti Chapman. Their son, Lorenzo, suffered from adrenoleukodystrophy (ALD), the most common of the leukodystrophies. The story of the Odones' struggle was dramatized in the 1992 Hollywood film Lorenzo's Oil, starring the well-known actors Nick Nolte, Susan Sarandon and Peter Ustinov. After 20 years, the Myelin Project was merged into another organization called ALD Connect in July 2019.^[1]

The Myelin Project had three branches, in the United States, Germany, and the United Kingdom. Its scientific advisory committee included researchers from Yale University and the University of Wisconsin–Madison in the United States, the Istituto Superiore di Sanità and San Raffaele Hospital^[2] in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, Queen's University at Kingston in Canada, the University of Cambridge and University of Edinburgh in the United Kingdom,^[2] and the Max-Planck-Institut in Germany.