Lorenzo’s Oil

Lorenzo's Oil

Lorenzo’s Oil is a combination of a 4:1 mix of oleic acid and erucic acid, extracted from rapeseed oil and olive oil designed to normalize the accumulation of the very long chain fatty acids in the brain thereby slowing the progression of adrenoleukodystrophy (ALD). It is specific to ALD and is NOT designed to be used to treat other leukodystrophies nor Multiple Sclerosis.

In the United States, initial start and consent to use the oil needs to go through either Dr. Gerald Raymond or Dr. Ali Fatemi (see contact information below). Some medical insurance companies may provide coverage for the oil, but others do not because it is still considered to be an experimental drug by the Food and Drug Administration (FDA).

How it Works

The oil, if started early in boys with adrenoleukodystrophy (ALD) showing no symptoms, is now known to have some benefit in preventing the childhood cerebral form of adrenoleukodystrophy. Researchers are still trying to understand the complex relationships among fats in the body, and how Lorenzo’s oil could be further modified to be more effective.  The oil is designed to normalize the accumulation of the very long chain fatty acids in the brain that thereby halting the progression of ALD.

Lorenzo’s Oil is specific to ALD, does not repair myelin, and does not have any known effect on other demyelinating disorders, such as Multiple Sclerosis. In ALD pre-symptomatic boys, however, Lorenzo’s Oil can (but not always) slow down the onset of the disease by stopping the body from producing the very long chain fatty acids, whose buildup leads to demyelination. It is jointly manufactured by Croda International and The Scientific Hospital Supply, and it is distributed by Nutricia Advanced Medical Nutrition. To read an article published by pediatric neurologist Dr. Gerald Raymond about Lorenzo’s Oil and its effect on ALD,  click here. For information about preparation and administration, click here.

How to Get It

In the United States, Lorenzo’s Oil is currently available to patients with ALD aged 18 months to 18 years who meet the criteria (normal MRI, positive VLCFAs – very long chain fatty acids). If you would like to get the oil, please contact:

Dr. Gerald Raymond | gvraymon@umn.edu | 612-625-5859‪‪‬‬ | University of Minnesota
Dr. Ali Fatemi | fatemi@kennedykrieger.org | 443-923-2750‪‪ | Kennedy Krieger Institute

*If you live outside the United States and you would like to obtain the oil, please contact Nutricia.


Failing to find a doctor capable of treating their young son Lorenzo’s rare disease, Augusto and Michaela Odone, founders of The Myelin Project, sought their own cure. They set out on a mission to find a treatment to save their child. In their quest, the Odones clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about Adrenoleukodystrophy (ALD), much less by laypeople. But they persisted, setting up camp in medical libraries, reviewing animal experiments, badgering researchers, questioning top doctors all over the world, and even organizing an international symposium about the disease.

Despite research dead ends, the horror of watching their son’s health decline, and being surrounded by skeptics (including the coordinators of the support group they attended), they persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually containing two specific long chain fatty acids, isolated from rapeseed [canola] oil and olive oil) to their son’s diet.

They contacted over 100 firms around the world until they found an elderly British chemist (Don Suddaby) working for Croda International who was willing to take on the challenge of distilling the proper formula. It proved successful in normalizing the accumulation of the very long chain fatty acids in the brain that had been causing their son’s steady decline, thereby halting the progression of the disease. There was still a great deal of neurological damage remaining which could not be reversed until new treatments were found to regenerate the myelin sheath (a lipid insulator) around the nerves.

For information about ALD diagnosis and treatment options, please contact the Kennedy Krieger Institute. If you live in the United States, click this link for their contact information (for United States residents only) or call toll-free (844) 334-3211. To contact International Care Management Coordinators, please call (888) 554-2080 or e-mail international@kennedykrieger.org.