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The Myelin Project

The Myelin Project is a multinational medical research non-profit organization aimed at funding research to find a cure for demyelinating diseases. Founded in 1989 by Augusto and Michaela Odone for their son, Lorenzo, who suffered from X-linked adrenoleukodystrophy (X-ALD), the most common of the leukodystrophies.
What is ALD?

Adrenoleukodystrophy, or ALD, is a hereditary neurodegenerative disorder that affects boys between the ages of 4 and 10.  ALD deteriorates the brain by stripping away myelin, the white matter that coats brain nerves and allows for the conduction of impulses between the brain and other parts of the body.  The process of demyelination is responsible for causing the neurological deficits of ALD patients, as well as the other demyelinating diseases like multiple sclerosis and adrenomyelonueropathy (AMN).  The resulting symptoms of ALD include visual disturbances, auditory discrimination, impaired coordination, dementia, and seizures.  These symptoms progress rapidly and eventually lead to a vegetative state within two years of diagnosis.   ALD affects 1 in every 17,900 boys worldwide. 

What is Lorenzo’s Oil?

Lorenzo’s Oil is a combination of erucic acid and oleic acid extracted from rapeseed and olive oil.  It has been found to be effective in treating presymptomatic ALD patients.  It works by reducing the amount of very long chain fatty acids in the blood.  These very long chain fatty acids are responsible for stripping away the myelin in the brain.  Studies show that Lorenzo’s Oil can either halt or delay the onset of symptoms in boys diagnosed with ALD.  Mr. Augusto discovered the oil combination during the search for a treatment for his son, Lorenzo. 

What is The Myelin Project?

The Myelin Project, which is headquartered in California, is an international scientific organization founded by Augusto Odone that sponsors scientific research aimed at myelin repair.  ALD is just one of many demyelinating diseases, which affect more than two million people worldwide.  The Myelin Project is unique in that it targets its funds towards clinically oriented experiments on the cutting edge of remyelination research and encourages direct interaction between families and researches. 

Have there been any recent breakthroughs?

In 2009, doctors in France successfully treated two boys suffering from ALD with gene therapy.  The treatment involved injecting a non-toxic form of HIV into the blood, which, in turn, led to the creation of new stem cells.  These stem cells helped to regenerate myelin in the brain.  The Myelin Project is also working to ensure that all newborns are screened for ALD, which currently is not part of the standard screening process. 

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One Seaport Plaza - 199 Water Street - 27th Floor
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