5/29/1978 to 5/30/2008
It is with great sadness that we announce that Lorenzo Odone finally lost his battle with adrenoleukodystrophy and went to heaven tobe with the angels on May 30, 2008.
Both his father Augusto and his life-long friend Oumouri Hassane were at his side when he passed away. Lorenzo died one day after his 30th birthday.
LorenzoOdone, whose story was told in the 1992 Hollywood movie "Lorenzo's Oil", starring Susan Sarandon and Nick Nolte, has died in Fairfax, VA, one day after his 30th birthday. Lorenzo was diagnosed withAdrenoleukodystrophy (ALD) in 1984, aged 6. Doctors told his parents that the neurological disease would swiftly deprive him of all his faculties and lead to his death within a maximum of two years.Odone's parents, Augusto and Michaela, despite having no scientific background, decided to research the rare genetic disorder. Their struggle and ultimate triumph, when they found an oil that stoppedthe disease in its tracks and, in pre-symptomatic boys, prevented the onslaught of ALD, captivated director George Miller, who went on to make 'Happy Feet' and 'The Witches of Eastwick'. He turned thetrue life story into a film which won Susan Sarandon an Oscar nomination as Best Actress. (Sarandon insisted on bringing Michaela Odone with her to the Oscar ceremonies.)
The film met with criticismfrom the medical community, who condemned it for setting up false hopes in families of ALD sufferers. The Odones however were amply vindicated by a study published two years ago, which showed thatLorenzo's Oil did indeed stop ALD in pre-symptomatic boys.
The Odones also founded the Myelin Project, a mould-breaking medical research charity which as well as providing leadership in the search fora cure for ALD also enabled families affected by the disease to meet directly with scientists working in the field "Scientists should never forget that their mission is to relieve human suffering...