The myelin project

Augusto, Michaela, and Lorenzo Odone

Parents of Lorenzo Odone

Augusto Odone
Born	Augusto Daniel Odone ()March 6, Rome, Italy
Died	October 24, () (aged&#;80) Acqui Terme, Piedmont, Italy
Occupation	Economist
Known&#;for	Inventor of Lorenzo's oil

Augusto Daniel Odone (March 6, – October 24, ) and Michaela Teresa Murphy Odone (January 10, – June 10, ) were the parents of Lorenzo Michael Murphy Odone (May 29, – May 30, ), who had adrenoleukodystrophy (ALD).

They became famous for developing a controversial treatment using Lorenzo's oil for their son's incurable illness. This quest was recounted in the film Lorenzo's Oil ().^[1] Augusto had previously been an economist for the World Bank.^[2]

In recognition of the parents' work, Augusto Odone received an honorary doctorate from the University of Stirling.

He continued to raise funds and drive the scientific task force known as The Myelin Project until his death. Michaela Odone battled lung cancer for some time and died on June 10, , at the age of ^[3]

Lorenzo died the day after his 30th birthday.

Michaela murphy odone

They became famous for developing a controversial treatment using Lorenzo's oil for their son's incurable illness. This quest was recounted in the film Lorenzo's Oil Augusto had previously been an economist for the World Bank. About: Augusto, Michaela, and Lorenzo Odone. In recognition of the parents' work, Augusto Odone received an honorary doctorate from the University of Stirling.

He was almost totally paralyzed but was, according to his father Augusto, "holding his own". He was unable to speak or move on his own. He communicated by wiggling his fingers and blinking his eyes. His mind was intact and he enjoyed music and having people read to him.^[4] He lived with his father in Virginia and was cared for by nurses and his family friend, Oumouri Hassane.^[5]

In mid, two years after Lorenzo's death, Augusto Odone sold his home in Virginia and moved to Acqui Terme in his native Italy, near his father's village of Gamalero where he lived when he was young.

He died there on 24 October , at the age of ^[6]

Background

This severe form of adrenoleukodystrophy was first described by Ernst Siemerling and Hans Gerhard Creutzfeldt in ^[7] Lorenzo was diagnosed in April , using a new blood test that had been recently developed.

At the time, people diagnosed with the disease were usually young boys between 5 and 10 years old, who would gradually become mute, deaf, blind and paralysed before dying, which typically happened within two years due to aspiration or neurological causes.

Augusto and Michaela refused to accept this prognosis as final, and fought to find a treatment for the disease, often conflicting with doctors, specialist and support groups.

Lorenzo michael murphy odone biography of donald Augusto Odone, a former World Bank economist, defied skeptical scientists to invent a treatment to try to save the life of his little boy, wasting away from a neurological disease, and to give hope to other children afflicted with the same genetic defect. Odone, 80, died yesterday in his native Italy, five years after the death of his son Lorenzo, who astonished doctors by surviving decades longer than they predicted. The concoction, derived from natural cooking oils, became known as Lorenzo's Oil, which was also the title of a movie depicting the relentless efforts by Odone and his late wife, Michaela, to try to find a cure. Cristina Odone told The Associated Press today that her father had died in Acqui Terme, a town in northwestern Italy in the area where he grew up. She said he had lived for many years with a series of medical problems and had died of organ failure precipitated by a lung infection.

With the help of Hugo Moser,^[8] and through long hours of research and study, the Odones, who had had no previous medical background, came up with a treatment. This treatment involved the consumption of a specially prepared oil, which became known as "Lorenzo's oil".^[9] Patients with a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's oil.^[10]

The Odones had an important role in developing Lorenzo's oil and in setting up The Myelin Project, which promotes and carries out research on ALD and other similar disorders.

Michaela also insisted on continuing to treat her incapacitated son as a human being and not a "vegetable", helping him devise a means of communicating with her and others through the blinking of his eyes and the wiggling of his fingers.

Cultural depictions

The Odones' story was first depicted in the Italian television film Voglia di vivere, starring Tomas Milian and Dominique Sanda.^[11] It was later made into the film Lorenzo's Oil, in which Augusto was played by Nick Nolte and Michaela by Susan Sarandon, who, through her involvement with the movie, became the spokesperson of The Myelin Project.

The episode of The Critic entitled "Dr. Jay", in which the main character Jay Sherman works to discover a cure for his boss's terminal disease, was a parody of the story.

A poem Michaela wrote about Lorenzo was set to music by Phil Collins. Titled "Lorenzo", the resulting song was featured on his album Dance into the Light.^[12]

References

^"Lorenzo Odone Subject of Lorenzo's Oil, the film portraying his parents' quest to cure his degenerative disease".

The Telegraph.
Michaela odone biography They became famous for developing a controversial treatment using Lorenzo's oil for their son's incurable illness. This quest was recounted in the film Lorenzo's Oil Augusto had previously been an economist for the World Bank. In recognition of the parents' work, Augusto Odone received an honorary doctorate from the University of Stirling. He continued to raise funds and drive the scientific task force known as The Myelin Project until his death.
June 1, Retrieved June 14,
^"Obituary: Augusto Odone". The Telegraph. June 1, Retrieved September 29,
^"Michaela Odone, 61, the 'Lorenzo's Oil' Mother Dies" by Wolfgang Saxon, June 10, , The New York Times.
^New Scientist
^"Obituaries: Lorenzo Odone".

The Telegraph.
Michaela odone death: Augusto Daniel Odone (March 6, – October 24, ) and Michaela Teresa Murphy Odone (January 10, – June 10, ) were the parents of Lorenzo Michael Murphy Odone (May 29, – May 30, ), who had adrenoleukodystrophy (ALD).
June 1, Retrieved September 5,
^"Obituaries: Augusto Odone". The Telegraph.
^Siemerling E, Creutzfeldt HG (). "Bronzekrankheit und sklerosierende Encephalomyelitis". Arch. Psychiat. Neurokrankh. 68 (1): – doi/BF S2CID&#;
^"Hugo Moser".
Michaela odone death
Michaela teresa murphy odone
The myelin project

The Guardian. February 21, Retrieved June 7,

^Odone A, Odone M (June ). "More on Lorenzo's oil". The New England Journal of Medicine. (26): –5.
Lorenzo michael murphy odone picture They became famous for developing a controversial treatment using Lorenzo's oil for their son's incurable illness. This quest was recounted in the film Lorenzo's Oil In recognition of the parents' work, Augusto Odone received an honorary doctorate from the University of Stirling. He continued to raise funds and drive the scientific task force known as The Myelin Project until his death. Michaela Odone battled lung cancer for some time and died on June 10, , at the age of
doi/NEJM PMID&#;
^Aubourg P, Adamsbaum C, Lavallard-Rousseau MC, Rocchiccioli F, Cartier N, Jambaqué I, Jakobezak C, Lemaitre A, Boureau F, Wolf C (September ). "A two-year trial of oleic and erucic acids ("Lorenzo's oil") as treatment for adrenomyeloneuropathy". The New England Journal of Medicine. (11): – doi/NEJM PMID&#;
^Augusto Odone ().

L'olio di Lorenzo. Una storia d'amore. Mondadori, ISBN&#;.
^Billboard on PCArchived June 13, , at the Wayback Machine