Funding Myelin Research Since  1989

The Odones


Augusto Odone was born in Rome in 1933. 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 body which seeks to promote research into those diseases which destroy myelin, the white matter of the central nervous system without which the brain cannot transmit messages to other parts of the body. The goal is to bring hope to those suffering from conditions such as multiple sclerosis and the leukodystrophies (of which ALD is one).  Lorenzo’s Oil, the film starring Nick Nolte as Augusto Odone and Susan Sarandon as his wife Michaela, moved the whole world and made Lorenzo Odone's story famous throughout the world.  In this book Augusto Odone speaks for the first time since his son’s death and tells the amazing story of his long quest to cure Lorenzo: an epic story, an everlasting message of perseverance, love and hope which makes him a great hero of our time. In early 2012, a campaign began to nominate Augusto for the Presidential Medal of Freedom, which the most prestigious American civilian award bestowed.
Lorenzo Michael Murphy Odone was born on May 29 1978 in Washington DC.  During his first years at Kindergarten his teachers reported problems with his behaviour and a deterioration in his attention span. By 1984, when he was six, Lorenzo's behavioural problems had worsened and he began to suffer from blackouts and memory lapses, symptoms akin to those of stroke victims. A brain scan finally confirmed that Lorenzo was suffering from ALD. The prevailing medical wisdom decreed that children with ALD typically lived for only a few years beyond diagnosis. But Augusto and Michaela Odone refused to accept this, and began an exhaustive quest for an effective treatment. Despite having no medical training, they contacted specialists and combed the scientific journals.  

In 1987, having taken early retirement, Augusto Odone invented a treatment, in the form of a vegetable oil, that appeared to arrest the progress of ALD. To help with the oil's development, the Odones enlisted a British scientist, Don Suddaby, who had worked at the Croda Universal chemical company in Hull. He came out of retirement to help produce an edible mixture of olive and rapeseed oil extract, finally sending the Odones a bottle of what would become known as "Lorenzo's oil". Although the Odones were told that the oil might have a deleterious effect, they decided, in view of the rapid deterioration in their son's condition, to risk administering it: Lorenzo in fact has lived 22 years longer than the doctors predicted.  Throughout the years of his illness Lorenzo displayed exemplary courage. He had lain paralysed in a darkened room, unable to see or speak, while his body developed normally through childhood and adolescence. He remained completely unaware of the global celebrity conferred on him by the Hollywood film that told his story. "Michaela once said that the real Lorenzo was locked in his ALD body," Augusto Odone once said, "and I believe that is true." Lorenzo died the day after his 30th birthday on May 30th, 2008. He was almost totally paralyzed but was, according to his father, "holding his own". 

A graduate cum laude from Dunbarton College of the Holy Cross, Michaela Murphy Odone was granted both a French government and a Fulbright scholarship to study at the University of Grenoble (France) and to teach English at a local lycée. In 1966 she made the list of Outstanding Young Women of America. Michaela had an important role both in developing Lorenzo's Oil and in setting up the Myelin Project. But one of her major feats was undoubtedly to have kept Lorenzo alive and in good health all these years. She did this by focusing almost exclusively on his care. Giving up all forms of entertainment, she mastered every aspect of the disease—neurological, metabolic, and endocrinological. 

The care plan she wrote was praised by all doctors who knew the case. For sixteen long years she spent interminable hours at Lorenzo's bedside, day in and day out. Her passionate caring for Lorenzo, however, did not prevent her from answering the constant flow of questions from desperate ALD mothers all over the world. Michaela had a history of helping people in their moments of need, especially the poor and disadvantaged. During her years in the Comoros, the French-speaking island nation in the Indian Ocean, she ran an informal clinic, distributing medicines donated by charitable U.S. organizations.

Like knights of yore, she would jump into difficult situations, correcting injustices and righting wrongs, wielding her pen or portable phone as weapons. She once wrote from the U.S. to the President of the Comoros, who had been our neighbor there, and convinced him to free two of our Comorian friends who had been jailed for political reasons. Michaela was gifted with a Cartesian mind, superb writing skills and artistic temperament. Paragraphs she helped me draft when I was working at the World Bank continue to circulate in that organization's official reports. With her impeccable French, she helped me write the Economic Plan of the Comoros, which I had been assigned to draw up under a United Nations-financed, Bank-executed project. In later years, she conceived a poem about Lorenzo and sent it to Phil Collins. He immediately wrote back asking her not to give her lyrics to anyone else because he wanted to put music to them. Phil kept his word and now the song "Lorenzo" is part of his 1996 album, "Dance into the Light."

For her devotion to Lorenzo, Michaela was sometimes referred to as a "mother tiger." Other times she was called Mrs. Fix-it for her New Yorker's swiftness in solving problems. But the word "hero" is what defines her best. Her courage, dedication, and drive had an impact not only on Lorenzo's life but also on the lives of so very many children and their families around the world. With her delicate beauty, natural elegance, and remarkable blend of spirituality and human warmth, Michaela was a very attractive woman—in fact quite irresistible. To use a cliché, it was love at first sight when I first met her (in Milan in 1966.) At Michaela's wake in her native Yonkers, New York, an often-repeated phrase was, "They don't make them like Michaela any more." And indeed my Michaela was unique. If during her earthly life Michaela touched the lives of countless people, her legacy of commitment, love, and compassion will continue to be an inspiration to parents of sick children for years to come.