Two first graders started a fundraising campaign to find a cure for a rare disease
Jonah Pournazarian was born with an extremely rare metabolic malfunction, known as Glycogen Storage Disease, or GSD. Jonah’s case is identified as Type 1b, which affects mainly Ashkenazi Jewish kids.
Because Type 1b of GSD is so rare medical researchers and potential grant givers have long ignored it. Jonah’s best friend at the Wise School, Dylan Siegel, wasn’t willing to ignore it, however. He decided to raise money to support the work of a leading GSD researchers.
“I suggested to Dylan that he set up a lemonade stand, but he said he wanted to write a book,” recalls Dylan’s mom.
The result was an illustrated 14-page book named “Chocolate Bar by Dylan Siegel.” The first-time author kept pushing the project, drafting his marketing consultant father for the production phase of the project, with an initial print run of 200 copies. Now there are nearly 25,000 “Chocolate Bar” books sold all around the world.
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.
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.”
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