South African Jews Fund Canavan Therapy for Youth

An 8-year-old South African boy underwent gene therapy this week for a Jewish genetic disease — thanks to funds provided by the South African Jewish community.

Asher Gluckman, who suffers from Canavan Disease, was the first South African to undergo the therapy, which took place at Yale University Medical School in New Haven, Conn.

Gluckman is one of 15 victims of the disease who is undergoing the therapy at Yale.

The therapy involves transplanting a synthetic gene in order to combat Canavan, which is a congenital birth disorder.

The disease prevents the formation of myelin, which cover nerves that are important for transmitting messages from the brain to the body.

Children who suffer from Canavan cannot walk, talk and, at times, cannot breathe on their own. Death almost always occurs before the age of 10.

Canavan is a recessive disorder, which means that both parents must carry the disease in order for them to pass it on to their children.

While rare, it has a 1 in 33 carrier rate among Ashkenazi Jews.

Two of the Americans who received treatment this week are in for their second treatment — one showed some improvement after the first dosage in New Zealand in 1996.

“We are hoping the gene will stimulate their development,” said Dr. Sara Rockwell of the Yale School of Medicine.

The therapy follows months of red tape and waiting by anxious parents. The gene therapy was originally scheduled to take place in New Zealand, Dr. Matthew During, head of molecular medicine and director of gene therapy at the University of Auckland.

But after extensive negotiation and bureaucratic snafus, the procedure was moved to the United States.

Gluckman’s parents, who flew to the United States with their son, received the money necessary for the procedure after appeals from South Africa’s chief rabbi, Cyril Harris, and the South African Jewish Times newspaper.