Adrenomyeloneuropathy (AMN) is a genetic neuro-degenerative disease. It is the adult onset of adrenoleukodystrophy (ALD). In about half of the boys who inherit the mutated ALD gene, symptoms of the disease do not develop until young adulthood, and in general, they progress more slowly. Beginning in their 20s and 30s, these young men exhibit neurological based motor lesions in their extremities....
New medical treatments must be proven safe and effective before they can be offered to a large number of patients. New treatments are tested through clinical trials, a series of research studies using a limited number of patients. Any new type of treatment can be tested in a clinical trial. If you or a loved one has...
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...
Adrenoleukodystrophy (also known as X-linked adrenoleukodystrophy, ALD) is a rare, genetic disorder characterized by the breakdown or loss of myelin – the fatty covering surrounding nerve cells in the brain – and progressive dysfunction of the adrenal gland. As an X-linked disorder, ALD presents most commonly in males and occurs in about one out of every 17,000...
If your child has been recently diagnosed with adrenoleukodystrophy (ALD), you are not alone and we are here to help. Our newborn was just diagnosed with ALD. What do we do and what should my pediatrician know? Your baby should start getting his MRI, by the age of 1, to establish a baseline. MRI’s should continue...
Lorenzo’s Oil is a 1992 American drama film directed by George Miller. It is based on the true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo’s adrenoleukodystrophy (ALD) who later founded The Myelin Project. They invented an oil treatment that is still in use to this...
Augusto Augusto Odone was born in Rome in 1933 and passed away in Aqui Terme, Italy in October of 2013. After a long career in the USA as an economist with the World Bank, he now lives in Italy. He has an honorary degree in medicine. Augusto Odone and his wife Michaela (died in 2000) founded The Myelin Project, an international scientific...