There are soft tissue sarcomas that can be from this chemical's harm ... that cause lung cancer - not just from smoking. 

 

What is The Myelin Project?

...an international grassroots organization whose mission is to accelerate medical research on myelin repair. more »

Information About Lorenzo's Oil and How it Works

Lorenzo's Oil: Advances in the Treatment of Neurometabolic Disorders

 

A Letter From Augusto Odone

February 19, 2004

Dear Friends of The Myelin Project,

As the inventor of Lorenzo's Oil, I was awarded some time ago a patent by the U.S. Patent and Trademark Office (No. 5,331,009).  So far I have not received any royalties from Croda Chemicals Europe Ltd., the manufacturer of the oil—in fact,  for the past 15 years, I have had to pay for the Oil for Lorenzo's needs myself. Recently, however, I entered into an agreement with Croda under which they would pay a small royalty. To avoid any potential conflicts of interest, I directed Croda to pay the royalties to The Myelin Project. This agreement will stand for as long as I am President of The Myelin Project, after which the royalties would accrue to a trust I have established for the care of Lorenzo.

With warm regards,

Augusto Odone

Remembering Michaela 

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 our 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.

 

Michaela in Paris, 1965

 

Like knights of yore, she would jump into difficult situations, correcting injustices and righting wrongs, wielding her pen or portable phone as weapons. I remember when she 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."

 

Michaela and Susan Sarandon at a fundraising event in New York in 1995

 

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.

     Augusto Odone
     July 2000

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