Governor Strickland Declares November Tay-Sachs Aware... ( Dakota's Dream to highlight month lon...)

Governor Strickland Declares November Tay-Sachs Awareness Month

Date:11/2/2007

Dakota's Dream to highlight month long fund raising events to find the cure

CLEVELAND, Nov. 2 /PRNewswire-USNewswire/ -- Ohio Governor Ted Strickland has officially declared November as Tay-Sachs Awareness Month and encourages all Ohio citizens to understand the importance of genetic testing and the need for research to help find a cure. Tay-Sachs disease is a genetic disorder that is found most frequently in Ashkenazi Jews, French Canadians, Louisiana Cajuns, and Irish Americans. One in every 250 people is a carrier of the Tay- Sachs gene, a disease that has no known treatment and is always fatal in children. The governor's timely declaration was great news to Cure Tay-Sachs Foundation (CTSF) President Ken Bihn, whose eight year old daughter Dakota is suffering from the terminal disease. Ken, along with his family, friends and other Tay-Sachs affected families formed the CTSF earlier this year and were granted tax exempt status as a 501(c)(3) corporation by the Internal Revenue Service.

The CTSF has initiated a series of events this November to raise awareness of both the disease and hopeful research initiatives. "We are active participants in the Tay-Sachs Gene Therapy Consortium, an international collaboration of researchers from Auburn University, Boston College, Cambridge (UK), Harvard Medical School and Massachusetts General Hospital. This therapy has shown great promise in animal models and our goal is to be conducting clinical trials in as little as three years," said Ken from his Cleveland headquarters. "This is not just about Dakota, but for every child and family that has been or will be affected in the future if we do not find a cure. Time is not in our favor with Dakota, so we chose November, our month of Thanksgiving, to try to educate the world about Tay-Sachs and raise awareness of this unpublicized killer."

Dakota Bihn was diagnosed with the juvenile form of Tay-Sachs and doctors told the Bihn family that Dakota would likely be
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