Frequently Asked Questions - F.A.Q.'s

What is Myelin?

Myelin is the insulating sheath surrounding nerve cells...

The myelin is the white matter coating our nerves, enabling them to conduct impuxlses between the brain and other parts of the body. It consists of a layer of proteins packed between two layers of lipids. Myelin is produced by specialized cells: oligodendrocytes in the central nervous system, and Schwann cells in the peripheral nervous system. Myelin sheaths wrap themselves around axons, the threadlike extensions of neurons that make up nerve fibers. Each oligodendrocyte can myelinate several axons. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and acquired by diseases such as multiple sclerosis.

What is Lorenzo's Oil?

Lorenzo's Oil is a combination of a 4:1 mix of erucic acid and oleic acid, extracted from rapeseed oil and olive oil.

It is used in the investigational treatment of presymptomatic patients with adrenoleukodystrophy (ALD). The oil was formulated by Augusto and Michaela Odone after their son Lorenzo was diagnosed with the disease in 1984, at the age of five. Augusto received U.S. Patent No. 5,331,009^[2] for the oil. The royalties he now receives are paid to the Myelin Project

How do I get Lorenzo's Oil?

Lorenzo's Oil is available only to patients taking part in a clinical trial under the direction of Dr. Gerald Raymond of the Kennedy Krieger Institute.

Dr. Raymond has assumed the work of the late Dr. Hugo Moser. We are working with the FDA to obtain approval of Lorenzo's Oil as a drug, so that it can be widely available. In the U.S., Lorenzo's Oil can only be obtained through prescription by Kennedy Krieger authorized physicians. A 500ml bottle costs approximately $56.00. Some insurance companies will provide coverage for the oil, but others do not because it is still considered an experimental drug by the FDA. The oil is jointly manufactured by Croda International of Britain and SHS International (Scientific Hospital Supply).

Kennedy Krieger Institute

707 N. Broadway
Baltimore, Maryland 21205

Referral specialists are available from 8:00 A.M. to 5:00 P.M. Eastern Standard Time (EST),

Monday through Friday, and will gladly answer your questions.

Toll-Free Main Number (800) 873-3377

*If you live outside the United States, click "Lorenzo's Oil International" *

How does Lorenzo's Oil Work?

Click the following slideshow to find out.

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Can Lorenzo's oil help treat diseases other than ALD?

Lorenzo's Oil is specific to ALD, does not repair myelin, and does not have any known effect on other demyelinating disorders. In ALD presymptomatic boys, however, Lorenzo's Oil often (but not always) prevents the onset of the disease by stopping the body from producing the very long chain fatty acids, whose buildup leads to demyelination.

How is Lorenzo?

Unfortunately, Lorenzo died at his home in Fairfax, Virginia on May 30, 2008, one day after his 30th birthday due to complications of aspiration pneumonia, with his father Augusto and his life long friend Oumouri at his side.

Contact Us Here:

The Myelin Project