Brown, Arcuri Introduce Bill to Raise Awareness of Tay-Sachs Disease

Resolution Would Designate September as Tay-Sachs Awareness Month

WASHINGTON, D.C. – In an effort to raise awareness about a deadly nerve cell disease, U.S. Sen. Sherrod Brown (D-OH) and U.S. Rep. Michael Arcuri (NY-24) introduced a resolution that would designate September as National Tay-Sachs Awareness Month.

Tay-Sachs is a rare, inherited disease that destroys nerve cells in the brain and spinal cord. There is no proven treatment or cure, and it is always fatal in children.

“Tay-Sachs is a devastating disease that is often overlooked and misunderstood,” said Brown. “This disorder requires our close attention. The more people who are aware of the risk posed by Tay-Sachs, the better our chances of preventing and finding a cure for this deadly disease.”

“I am pleased to join Senator Brown to again bring the nation’s attention to this deadly disease,” Arcuri said, “We need to make sure that we remain vigilant and work to find a cure for this debilitating brain disease by bring the nation’s attention to Tay-Sachs.  I pledge my continued support in the fight to find a cure for Tay-Sachs once and for all.”

Brown was prompted to introduce this resolution after receiving a letter from Kenneth and Julie Bihn, Olmsted Falls, Ohio constituents who requested that the Senator lead the effort in Congress to increase awareness of Tay-Sachs. Their daughter, Dakota, suffers from the disease. Dakota’s fight against the disease inspired her parents to create the Cure Tay-Sachs Foundation, a nonprofit in Ohio dedicated to increasing Tay-Sachs research and awareness.

The disease disproportionately affects Ashkenazi Jews, Louisianan Cajuns, French Canadians, and Irish Americans. However, about one in every 250 people from all backgrounds is a carrier of the recessive gene that can trigger Tay-Sachs in offspring. About 1.5 million Americans are carriers. When two unaffected carriers of the disease have a child, there is a one in four chance that child will be born with Tay-Sachs.

Simple, inexpensive blood tests can determine if a person is at risk of passing the disease to children. Doctors recommend tests for prospective parents from at-risk groups.

By designating September as Tay-Sachs Awareness Month, Brown and Arcuri hope to raise public awareness, increase screening rates, and ultimately reduce the incidence of Tay-Sachs.

The National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD), the oldest genetic disease organization in the U.S., has endorsed the resolution. 

Tim Lord, NTSAD Board President, said, “Until a cure is found, education, coupled with carrier screening is the most effective tool in the campaign to prevent Tay-Sachs. With the American community continuing to diversify in background, it is important for everyone to know their family history to better understand their risk to help prevent this disease. The National Tay-Sachs & Allied Diseases Association, Inc. applauds Senator Brown and Rep. Arcuri’s efforts to raise national awareness of this deadly disease.”

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