Lorenzo's Oil

Michaela and Augusto Odone are probably among the most dedicated parents in history. When their son Lorenzo was diagnosed with Childhood Cerebral X-linked adrenoleukodystrophy at age five, they decided to investigate and publicize a condition that had to date been more or less ignored.  The Odone’s first attempted to cure their son by feeding him a diet with low concentrations of VLCFA. This proved unsuccessful, because Lorenzo’s body continued to produce VLCFA. His parents then concluded that preventing the synthesis of VLCFA was the only way to stop the demyelinization process.  The Odones found  a scientific paper which stated VLCFA levels decrease when there is an increase in the level of the short chain unsaturated fatty acid (SCFA) oleic acid because they both compete to use the same enzyme. The Odones then created what has become known as Lorenzo’s Oil, a mixture of oleic acid and euric acid (another SCFA).

Studies have found that Lorenzo’s Oil is best used as a preventative method because if it is given to a child prior to symptom onset, the symptoms are significantly lessened or resolved completely. Unfortunately, if the mixture is administered once the disease symptoms are present, it isn’t capable of remyelinating damaged nerve cells.

The Odones founded the Myelin Project with the intention of speeding up the cure for myelin regeneration. This organization funds research, allows researchers worldwide to confer about their progress towards remyelination, and permits scientists to interact with people affected by demyelinating diseases.

A movie entitled “Lorenzo’s Oil” was made in 1993, explaining the determination of the Odone family to find a cure for ALD.