On May 7, 2002, 12-year-old Nathan Van Vleck of Pittsford died after a nearly lifelong fight with an exceedingly rare inherited disease known as vanishing white matter (VWM) disease. As Nathan's illness progressed, the family discussed how it might help other families and patients coping with VWM, and the family decided to allow the study of some of Nathan's brain cells for research purposes. Immediately upon his death in the hospital, a team of neuropathologists and neurobiologists worked through the night to isolate some of Nathan's brain cells, which were then grown and studied in the laboratory.

The outcome was an unprecedented in-depth look at the brain cells of a VWM patient. The investigation not only yielded important knowledge about how the disease affects the brain, but it also marks one of the first times that scientists have been able to isolate neural stem cells from a patient and use them to learn what is going wrong in the brain of a patient with a complex neurological disease. The team of scientists from the University of Rochester Medical Center reported its results in the March issue of the prestigious research journal Nature Medicine.

"This family's generosity resulted in a great study and tremendous new findings about the brain," says his physician, pediatric neurologist Carlos Torres, M.D. of Golisano Children's Hospital at Strong, the children's hospital affiliated with the medical center. "It's a great example of how a family can contribute to advances in medicine."

VWM targets cells that make up part of the brain's white matter, turning the normally strong and durable substance into a yellowish, gelatin-like material. While we hear a great deal about the importance of our "gray matter," a term that refers to crucial brain cells known
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Contact: Tom Rickey
tom_rickey@urmc.rochester.edu
585-275-7954
University of Rochester Medical Center
25-Apr-2005