September Named Tay-Sachs Awareness Month

By Nate Sugarman

Published August 21, 2008, issue of August 29, 2008.

The Senate this July voted unanimously to name September National Tay-Sach’s Awareness Month. The resolution was introduced by Senator Sherrod Brown of Ohio and co-sponsored by Senator Evan Bayh of Indiana. At this point, Tay-Sachs, a hereditary degenerative neurological disease, has no cure. The National Tay-Sachs & Allied Diseases Association, Inc., the oldest genetic disease organization in America, has endorsed Brown’s resolution.

The initiative was set into motion by an Ohio family with a daughter suffering from the disease. The Bihns of Olmsted Falls wrote to Brown and proposed the measure as a way to increase awareness and raise funds for research. Tay-Sachs is always fatal in children, with many not living beyond the age of 5. Dakota Bihn is 9. September is seen by the Bihns as a starting point for 12 months of fundraising — with a goal of $1 million.

“Tay-Sachs is a devastating disease that is often overlooked and misunderstood,” Brown said. “This disorder requires our close attention. The more people who are aware of the risk posed by Tay-Sachs, the more lives we can potentially save.”



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