The Myelin Project

Non-profit OrganizationsUnited States11-50 Employees

We are a 501(c)3 non-profit organization focused on improving the quality of life for those living with adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN) through research, advocacy and family support. We fund research to advance treatment and to find a cure, raise awareness and promote education, advocate for newborn screening, and 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.

Adrenoleukodystrophy (ALD) is a rare x-linked genetic brain disease that affects roughly 1 in 15,000 people. It has four different forms, or phenotypes. The most devastating appears in childhood, generally between the ages of four and ten years old. Normal, healthy boys suddenly regress rapidly. Symptoms begin with hyperactivity, withdrawal, and/or difficulty concentrating. As the disease continues to destroy myelin in the brain and nervous system, symptoms grow worse including blindness, deafness, seizures, loss of muscle control, and progressive dementia. Often this leads to either death or permanent disability usually within 2 to five years of diagnosis.

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