Lorenzo Odone (of “Lorenzo’s Oil” Fame) Dies at 30

Lorenzo Odone, whose struggle against a rare disease led his parents to be activists portrayed in the movie “Lorenzo’s Oil,” has died at age 30.

His parents fought to save him from the metabolic nerve disease adrenoleukodystrophy (ALD) despite the fact that they had no scientific background. Lorenzo Odone died at home on Friday at his home after coming down with pneumonia from getting food stuck in his throat.

You can learn more about ALD at Web sites from the National Institute of Neurological Disorders and Stroke, including a fact sheet, and more technical information from the National Center for BiotechnologyInformation. You can find advocacy information from the ALD Foundation.

Lorenzo Odone ended up living 20 years longer than doctors had predicted. He was diagnosed at age 6 with adrenoleukodystrophy, or ALD.

The movie “Lorenzo’s Oil” starred Nick Nolte as Augusto Odone and Susan Sarandon as his wife Michaela.

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