Wednesday, February 11, 2009

Tay-Sachs Fund Raiser On Paltalk

A fund raising effort for the Cure Tay-Sachs Foundation will begin at 6 PM New York time Friday February 13 on Paltalk in the Little Angels Charities Tay Sachs Fund Raiser in the Radio/TV Section.

Tay-Sachs disease is a hereditary, degenerative neurological condition caused by a single gene mutation. Today the disease has no cure, no treatment, and is always fatal in children.

The disease in named after Warren Tay (1843-1927), a British ophthalmologist and Bernard Sachs (1858-1944), a New York neurologist.

Tay-Sachs disease is caused by the absence or insufficient level of a vital enzyme called Hexosaminidase A (Hex-A). Without Hex-A, a fatty substance or lipid called GM2 ganglioside accumulates abnormally in cells, especially in the nerve cells of the brain. This ongoing accumulation causes brain cells to swell, malfunction and ultimately die.

The populations most at risk for Tay-Sachs disease are Ashkenazi Jews, French Canadian and Louisiana Cajuns – one in 27 carries the gene mutation. In the Irish American population one in 50 people carry and in the overall population one in every 250 people carry the deadly gene mutation. That means 1.2 million Americans carry the Tay-Sachs gene mutation.

Carrier status can be determined by a simple blood test.

The Cure Tay-Sachs Foundation is a tax exempt 501(c)(3) organization that was formed in June 2007 by Tay-Sachs families and friends. The foundations mission is to raise funds to support research that show promise to treat or Cure Tay-Sachs disease.

Since June 2007 the CTSF has received money from all 50 U.S. states and eight different countries. The foundation has collected over $743,000 in donations and issued $300,000 in research grant to the Tay-Sachs Gene Therapy Consortium which was founded one year ago with the help of the foundation.Researchers from NYU, Harvard Medical School, Boston College, Auburn University, and Cambridge University in England are using gene therapy to treat Tay-Sachs disease. They have extended affected mice to full life term and they they are now working on a large animal model. Tay-Sachs is naturally occurring in cats and sheep. The goal is to be ready for human clinical trials between June 2011 and June 2012. The entire project will cost between $1.8 and $2.2 million.

Foundation founder Kenneth Bihn will be my guest during the fund raiser at 9 PM New York time Friday February 13. To talk to him CLICK HERE.

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