Tay-Sachs plea for clinical research

By Jennifer Lipman, February 2, 2012
Amelie Lewi

Amelie Lewi

The Jewish community is being urged to support fundraising for a clinical trial next year aimed at preventing the onset of the fatal Tay-Sachs disease.

Daniel Lewi, whose two-year-old daughter was diagnosed with Tay-Sachs last year, has launched a foundation to raise £3 million for the vital research.

Tay-Sachs is a progressive neurological genetic disorder caused by a defective gene, the symptoms of which tend to appear when the child is a few months old. It is estimated that about one in 20 Ashkenazi Jews are Tay-Sachs carriers, 10 times higher than in the general population.

Cambridge University's Professor Timothy Cox, an expert on the condition, hopes to start the trial in 2013. If his work is successful, it could produce the first method of treating those at risk before it is too late.

Jewish Care runs screenings, and there are now only one or two cases discovered per year in Britain. But for those that do suffer from it, Tay-Sachs is devastating. Average life expectancy stands at three to five years, yet because it is caused by a recessive gene, it can be hidden in family histories for generations.

Rates of intermarriage also mean that many do not know that they could be carriers. Mr Lewi, whose mother is not Jewish, is one example. His Portuguese wife - brought up Catholic -– is also unaware of any Jewish ancestors.

The couple, from Lewisham in south-east London, had no idea what Tay-Sachs was when their daughter Amelie suddenly stopped crawling and walking. She was diagnosed last March at 15 months old.

"It's extremely rare," said Mr Lewi. "The Jewish community tends to get tested but if you are not brought up with knowledge of this, then you are not going to be. Many members of my father's family died in the camps, so even if these things were known about, they have been lost."

Mr and Mrs Lewi have started the Cure and Action for Tay-Sachs Foundation (CATS) to fundraise for Professor Cox's work. Mr Lewi hopes to raise awareness and has implored the Jewish community to help CATS.

Katrina Sarig, director of the charity, Jewish Genetic Disorders UK, expressed hope that Professor Cox's research would gain funding. She said it was vital to highlight that, "regardless of the partner you choose or your affiliation or involvement, if you are of Ashkenazi origin you still carry this heightened risk".

Last updated: 1:26pm, February 2 2012