The Tay Sachs Disease Prevention Program

The Tay Sachs Disease Prevention Program started in Melbourne in 1998.

People of Ashkenazi Jewish origin have a carrier rate of 1 in 25, compared to the carrier rate in the Australian community of about 1 in 250.

Tay Sachs carrier screening has been offered to year 11 Jewish Students at the Jewish High Schools. So far about 85% of students have taken up the opportunity for Tay Sachs Disease carrier tests. There are many students who do not attend these schools and those who are at universities that have missed out on this opportunity.


Tays Sachs Disease is an inherited incurable disease of the central nervous system. Its symptoms first appear when a baby is about 6 months old. The baby stops smiling and developing through the normal developmental stages. Blindness and paralysis follow within the next four years resulting in the child's death by the age of five years. Most babies die within the first two years. Tays Sachs Disease is an autosomal recessive disease that is the result of chance inheritance. A carrier is normal and healthy and could thus be ignorant of his/her carrier status. Tay Sachs Disease is not infectious and therefore cannot be caught. It is only if both partners are carriers of the faulty gene for Tay Sachs Disease that a child can be born with the condition. A blood test can determine whether or not a person is a carrier and if a couple is 'at risk' of having a child with Tay Sachs Disease. Genetic counselling and testing is available through the Victorian Clinical Genetics Service (VCGS).

The VCGS offer the Jewish Community of Victoria Australia a program to prevent Tay Sachs Disease. This program has limited funding from the charitable Pratt Foundation. Our goals are to prevent Tay Sachs Disease by bringing education and awareness of the disease to members of the Jewish community who are of child bearing age, and to offer them genetic carrier testing for the disease. We held a community awareness day at Jewish Community Services in March 2000, and intend to hold further information and testing sessions in the future