For three days in April, about 70 families whose lives have been upended by Tay-Sachs disease gathered in San Diego for the annual National Tay-Sachs and Allied Diseases conference. The event — which attracted families caring for children with Tay-Sachs, as well as those who have lost loved ones to the degenerative disease that claims most of its victims by age 4 — included forums on symptom management and new research frontiers. There were also support group sessions and a candle-lighting ceremony honoring those who had died.
Tay-Sachs is probably the best known “Jewish” disease. As many as one in 25 Ashkenazi Jews is a carrier of the defective recessive gene. Yet, among the conference attendees, who came from as far away as Poland and Guatemala, only a handful were Jewish. “When I speak with newly diagnosed families, they often say, ‘But we’re not Jewish,’” said Kimberly Kubilus, NTSAD’s director of family services. read more