Groups seek to save NIH brain collection

April 1, 2005 at 4:39 PM

WASHINGTON, April 1 (UPI) -- Scientists and patient advocates are trying to prevent the National Institutes of Health from destroying a rare collection of human brains.

The NIH, as UPI reported last week, may destroy its collection of brains and other tissues from hundreds of patients who died from Creutzfeldt Jakob disease -- a fatal, brain-wasting illness similar to mad cow disease -- if another entity does not claim it.

Families of patients who died of CJD have reacted with outrage and several have contacted their respective members of Congress, urging them to step in.

"The brains and brain tissue were sent to NIH in good faith for future research and destroying them is an outrage," Terry Singeltary, whose mom died of CJD in 1997, wrote in a letter to Sen. Kay Bailey Hutchinson, R-Texas.

Consumer groups --including Consumers Union and a consultant to Public Citizen -- are also considering efforts to preserve the collection.

Neil Cashman, an expert on CJD-like diseases at the University of Toronto, said he has been attempting to drum up support with his colleagues at the University of British Columbia in Vancouver -- where he will move this summer-- to take in the collection.

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