Lorenzo’s Oil is a combination of a 4:1 mixture of glyceryl trioleate (GTO) and glyceryl trierucate (GTE) designed to normalize the accumulation of the very long chain fatty acids in the brain thereby slowing the progression of adrenoleukodystrophy (ALD). The oil is considered to be an experimental drug by the Food and Drug Administration (FDA).
How it Works
Researchers are still trying to understand the complex relationships among fats in the body. The oil is intended 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 come with risks. To learn more, please read this article published by pediatric neurologist Dr. Gerald Raymond about Lorenzo’s Oil and its effect on ALD, click here.
The oil is jointly manufactured by Croda International and The Scientific Hospital Supply, distributed by Nutricia Advanced Medical Nutrition.
How to Get It
WEP Clinical can assist patients with prescription orders from their primary care team to obtain Lorenzo’s Oil.
Yasmin Khera
Outreach Manager
951 Aviation Pkwy Suite 200
Morrisville, NC 27560
Mobile: 1 919 454 6467
Office: 1 919 694 5088
Fax: 1 919 822 1701
Email: [email protected]
Please visit us at wepclinical.com for further information
History
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 or call toll-free (844) 334-3211. To contact International Care Management Coordinators, please call (888) 554-2080 or e-mail [email protected].