Photo Credit: Courtesy of David Siegel
Dylan Siegel (left) and Jonah Pournazarian with the “Chocolate Bar” book.

Every Chocolate Bar dollar supports the GSD research of Dr. David A. Weinstein, initially at the Harvard Medical School and now at the University of Florida in Gainesville, where he directs the largest GSD treatment and research program in the world.

The disease was almost always fatal until 1971, when researchers developed the first effective therapy for GSD. A major breakthrough came a decade later with the discovery of a simple “medication” in the form of cornstarch, injected through a surgically implanted feeding tube.

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However, the prescribed doses have to be administered every three hours, without fail, and missing just one dose can lead to a hospital stay or even death.

Weinstein’s research, entirely underwritten by the Chocolate Bar campaign, has been able to extend the intervals between feedings, and his aim is to give his patients (and their parents) full nights of uninterrupted sleep.

In the long run, he is looking toward gene therapy as a cure, something that has been successful in dogs. He hopes to start trials on humans when the federal Food and Drug Administration gives the green light.

Weinstein, who visits Israel frequently on a collaborative project at Sheba Hospital, is upbeat about Jonah’s future. “Our treatment is working,” he said, “and I expect Jonah to do very well.”

For more on the Chocolate Bar campaign, visit www.chocolatebarbook.com.

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