When the Eeyou Awaash Foundation was first formed, the members knew that it could be many years before there were any meaningful results from the research taking place ... if there were any results!
But through the dedicated efforts of many people the mutated gene that causes Cree Leukoencephalopathy was found and located within two and a half years.
One person in particular was responsible as to why scientists located the gene so quickly - Dr. Deborah Black.
Dr. Black was not part of the actual lab research that found the responsible gene but it was through her persistent efforts to facilitate the lab research that gave the others the chance to find the gene. Following is part of an email from Deborah to one of the scientists responsible for the gene’s location.
“Dear Dr. Boespflug-Tanguay 1/14/02
Thank you for this wonderful exciting news. Beyond the satisfaction of finding a locus for Cree Leukoencephalopathy, you have also given the Cree people an opportunity to prevent this terrible disease, for which we are most grateful ....”
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Clusters of childhood deaths run in families
BY DEBORAH N. BLACK, MD
(courtesy of PARKHURST EXCHANGE)
Fresh out of my neurology residency in 1983, I spent six weeks working in Chisasibi. In 1980, the entire community of about 2,000 people had been relocated from Fort George on the east coast of James Bay because of the massive hydroelectric project. |
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The hunt for the gene: a fascinating cross-cultural collaboration
BY DEBORAH N. BLACK, MD
(courtesy of PARKHURST EXCHANGE)
As physicians working in the North and in Montreal became acquainted with Cree encephalitis (CE) and Cree leuko-encephalitis (CLE) (see Parkhurst Exchange, Mar. 2005, p. 25), new cases kept presenting. |
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Cree Leukoencephalitis and Cree Luekoencephalopathy were first diagnosed in the 1980's in Eastern James Bay and Northern Manitoba by Dr. Deborah Black et al. |
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