Parents of Children With Rare Disease Move Researchers to Connecticut


Gayle Temkin spends her days at Solomon Schechter Day School, where she occupies a small, windowless room to be near her daughter Alyssa, ready to administer the lifesaving medication that allows the youngster to survive.

Temkin knows well that parents of children with a rare liver disease must be perfect: missing a dose can be fatal.

“This is my job,” Temkin says. “I’m her mom.”

So when a group of parents in West Hartford had the chance to put Connecticut at the forefront of research into treatments and perhaps even a cure for glycogen storage disease, they eagerly took up the challenge.

“I just said, ‘How about bringing the program to Connecticut?'” recalled Temkin, who with her husband, Steve, organized a meeting in their home in April 2016 with David Weinstein, a Florida physician and GSD researcher since the 1990s. “It just…



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