http://www.myelin.org The Myelin Project Release RSS feed. . Copyright 2005, The Myelin Project Tendenci Membership Management Software by Schipul - The Web Marketing Company en-us noemail@myelin.org Fri, 10 Sep 2010 20:55:19 GMT Release http://www.myelin.org/en/rel/47/ Editorial 1972 www.thelancet.com Vol 371 June 14, 2008 Making rare diseases a public-health and research priority On May 30, a 30-year-old man with adrenoleukodystrophy died of pneumonia. Lorenzo Odone was a remarkable individual from a remarkable family. He lived for 24 years after his adrenoleukodystrophy was diagnosed (20 years longer than predicted). His longevity might have been, in part, due to the combination of erucic and oleic acids that were added to his diet by his parents. Michaela (who had been a publishing editor until her son was born) and Augusto (an economist) refused to accept there was no treatment for their son. By trawling through published hypotheses and research, they con cluded that a 4:1 mixture of glyceryl trioleate and glyceryl trierucate lowers the plasma concentrations of saturated very-longchain fatty acids, which are involved in the demyelination in adrenoleukodystrophy. Lorenzo’s oil, as it became known, was tested in trials led by Lorenzo’s... http://www.myelin.org/en/rel/47/ noemail@myelin.org Tue, 17 Jun 2008 16:00:00 GMT