The last screening for Tay Sachs outside of London is due to take place in Manchester next week.

Screening drives for the fatal genetic disorder have traditionally been run inside Jewish schools, paid for by the Tay Sachs Screening Programme. However, the charity, run by north Manchester-based doctor of genetics Sybil Simon, is due to close when she retires.

“For the past 20 years I have run it and fundraised for it. There is no one to take this over. No one wants to do voluntary work anymore.”

The charity has tested nearly 6,000 people since it began and runs the only testing equipment outside of London. There is currently no provision to offer this service on the NHS, except for London’s Guys Hospital.

The final drive is being run with Bnei Akiva northern fieldworkers and twin brothers Daniel and Shimon Gillis, who are determined that as many people as possible within the community will be tested on May 17.

“I wasn’t tested at school and I suspect a lot of others haven’t been,” said Shimon.

“I wanted to ensure that this last screening would be for the entire community, so we organised it at BA’s North Manchester premises.”