We are a 501(c)3 non-profit organization focused on improving the quality of life for those living with ALD and AMN through research,advocacy and family support. We believe we can accomplish our mission by pursuing the following initiatives to: fund medical research to advance treatment and to find a cure, raise awareness, promote education, & advocate for newborn screening of ALD, and to provide financial support to low-income ALD families in need.
The Myelin Project was established in 1989 by Augusto and Michaela Odone for their son Lorenzo who suffered from adrenoleukodystrophy (ALD), a rare genetic myelin disease that deteriorates myelin in the brain and central nervous system. Although not medical doctors, the Odones developed a treatment,“Lorenzo’s Oil” now adopted throughout the world. 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.