My friend Rich Lundwall talked with me this week about the National Tay-Sachs & Allied Diseases (NTSAD) 29th Annual Family Conference in Quincy, Massachusetts April 19 -22. He attended with his wife Petria and friends who are grandparents of little Elise. Please watch this 2.5-minute video to find out a little bit about Tay-Sachs.

Once thought of as a disease restricted to Jewish people, populations at high risk of carrying the gene for this progressive neurological genetic disorder include: Ashkenazi Jews, French Canadians, Louisiana Cajun, and Pennsylvania Dutch. Further, preliminary data suggests persons of British Isle and Italian decent have an increased carrier rate over the general population, according to the NTSAD.

A simple blood test will determine if you are a carrier, so the disease is preventable. The NTSAD says that "even if your childbearing years are over, your carrier status can be an extremely important piece of information. If you are a carrier, your close relatives (children, brothers, sisters, cousins, aunts, uncles) should be alerted so that they can be tested as well. Tay-Sachs carrier testing is also vital for the close relatives of families with an affected child, regardless of ethnic background, since all parents of children with Tay-Sachs are, by definition, carriers."

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