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 research to advance treatment and to find a cure
- raise awareness, and promote education
- advocate for newborn screening
- provide financial support to low-income families
The Myelin Project was established in 1989 by Augusto and Michaela Odone for their son Lorenzo who suffered from adrenoleukodystrophy (ALD), a rare genetic disease that deteriorates myelin in the brain and central nervous system. Although not medical doctors, the Odones developed a treatment and named it Lorenzo’s Oil which is now an adopted treatment throughout the world. The story of the Odones’ struggle was dramatized in George Miller’s 1992 film Lorenzo’s Oil starring Nick Nolte and Susan Sarandon.