Neurological Authority Hugo Moser

By Joe Holley
Washington Post Staff Writer
Friday, January 26, 2007

Hugo Moser, 82, a Johns Hopkins University scientist and a leading authority on the neurological disorder brought to public awareness by the film "Lorenzo's Oil," died Jan. 20 at Johns Hopkins Hospital of complications from recent vascular surgery. He had undergone surgery in October for pancreatic cancer.

Dr. Moser, a Baltimore resident, was director of the Neurogenetics Research Center at the Kennedy Krieger Institute in Baltimore and a professor of neurology and pediatrics at Johns Hopkins. He had focused since the mid-1950s on inherited disorders that affect the nervous system in children, particularly adrenoleukodystrophy, known as ALD. Together with his research team, he identified the characteristic biochemical abnormalities and established diagnostic tests, counseling and methods of therapy.

By the 1980s, when Dr. Moser first became aware of young Lorenzo Odone, he and his wife and longtime research partner, Ann Boody Moser, were working to develop a screening technique that would detect ALD at birth. The rare childhood disorder is characterized by the deterioration or loss of the myelin sheath surrounding nerve cells in the brain.

The condition, which occurs only in males and is passed down through the mother, destroys the nervous system and often leaves children unable to walk, see or hear. Death usually occurs one to 10 years after the onset of symptoms.

"Lorenzo's Oil," the 1992 film starring Nick Nolte and Susan Sarandon, with Peter Ustinov as Dr. Moser, told the story of Fairfax parents Augusto and Michaela Odone, who began researching ALD after learning in 1984 that their 5-year-old son had the disease. Although the Odones weren't scientists, their perseverance and self-education led them to the discovery of an edible oil that seemed to biochemically stabilize ALD sufferers.

Michaela Odone died in 2000. Lorenzo Odone, now 28, cannot see or walk.

In 2004, Dr. Moser told a Johns Hopkins publication that the movie did much to heighten public awareness of ALD but also was a hindrance in some respects.

"One reason 'Lorenzo's Oil' attracted attention -- a drawback -- was that it pitted the parents' interests against established medicine," he said. "Mr. [Augusto] Odone calls this 'Hollywood's version of man bites dog.' Also, the film hyped the oil's benefits. Soon, physicians were plagued by unverified claims. The medical community became dubious about the whole idea. As a result, our first grant applications to test the oil were turned down."

Hugo Wolfgang Moser was born in Bern, Switzerland, and spent his early years in Berlin, where his father was an art dealer and his mother an actress. The family escaped Nazi Germany in 1933 and lived in Heemstede, Holland, before fleeing across France, Italy and Spain in 1940. They managed to make their way to Cuba before obtaining visas to immigrate to New York.

Dr. Moser attended Harvard College in 1942-43 and left to serve in the Army. He received his medical degree from the College of Physicians and Surgeons at Columbia University in 1948 and served as a medical intern at Columbia-Presbyterian Medical Center in New York.

In 1950, he worked at Peter Bent Brigham Hospital in Boston and from 1952 to 1954 served as an Army medical officer in Korea. He received a master's degree from Harvard in 1955 and worked at Harvard and at Massachusetts General Hospital before joining Johns Hopkins in 1976.

Dr. Moser was director for the Center on Research on Mental Retardation and Related Aspects of Human Development at the Kennedy Krieger Institute from 1976 to 1988 and director of the institute's Neurogenetics Research Center from 1995 until his death. He was a prominent advocate for people with mental retardation and developmental disabilities.

In 2005, Dr. Moser published a study concluding that Lorenzo's oil can stave off ALD if boys begin taking it before symptoms appear. The Food and Drug Administration still considers the treatment experimental.

"Even though many people -- and I must say, myself not excluded -- maligned the oil, this study, which as far as I can tell is scientifically sound, showed that it does have an effect on certain types of ALD," Mr. Moser told the Boston Globe in 2005. "It suggests to me that it's more than snake oil."

His marriage to Monti Lou Brigham Moser ended in divorce. A son from that marriage, Peter Brigham Moser, died in 1992.

Survivors include his wife of 43 years, of Baltimore; a daughter from his first marriage, Tracey Schecht of Austin; two daughters from his second marriage, Karen Levin of West Chester, Pa., and Lauren Moser of Bethesda; and four grandsons.

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