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Boy’s “Chocolate Bar” book raises $500,000 to fight his friend’s rare liver disease

Two 7-year-old California boys recently were honored by the University of Florida for their efforts to find a cure for a rare disease. Best friends Dylan Siegel and Jonah Pournazarian were awarded UF’s first ever Young Philanthropist Award for their vision, generosity and leadership during the university’s inaugural Academy of Golden Gators celebration on Feb. 21.

The boys’ philanthropic work centers around a 14-page book Dylan wrote in 2012 to raise money to fight the rare genetic disorder that Jonah suffers from called glycogen storage disease. His goal is to raise $1 million through sales of “Chocolate Bar,” which reached the $750,000 milestone on Rare Disease Day, a day organized to raise awareness for rare diseases such as GSD and their impact on patients’ lives.

“Dylan and Jonah are exceptional kids,” said UF President Bernie Machen. “Their love for each other is contagious, so people naturally want to be a part of their campaign. My hat is off to both boys for making a difference at such a young age.”

About one in 100,000 people have GSD, but Jonah’s type, Type 1b, is a one-in-a-million case.  Children like Jonah receive doses of cornstarch at scheduled intervals throughout the day and night because it metabolizes more slowly than other carbohydrates. Until this therapy was discovered about 30 years ago, most children born with this disease did not survive past infancy.

“In one year Dylan and his book have done more to bring attention to this disease and raise money for research than has ever been done before,” said UF pediatrician David Weinstein, M.D., director of the largest GSD program in the world. “When we finally find a cure, we’ll be thanking Dylan for pushing the medical community to make it happen.”

The Siegel and Pournazarian families are partnering with UF to find better treatments and a cure for GSD, which creates serious and often fatal health risks. One hundred percent of the book’s proceeds are donated to Weinstein’s research as part of UF’s Glycogen Storage Disease Program.

“Chocolate Bar,” which means “awesome” to Dylan, details what he considers chocolate bar, like going to Disneyland. Since November 2012, more than 15,000 books have been sold to people in all 50 states and 42 countries.

“We are so moved by this honor and all the global awareness Dylan’s book has created to shine a light on the need for a cure to glycogen storage disease,” said Debra Siegel, Dylan’s mother. “The University of Florida has provided unprecedented support and world-class research, putting a cure in range.”

For more information about “Chocolate Bar,” visit Chocolatebarbook.com.

 https://www.uff.ufl.edu/onlinegiving/FundDetail.asp?FundCode=014421&digitrack=SOCHOCOLATEBAR_donate_sponsor

 

About the Author

Karen Dooley's picture

Karen Dooley

Director, College of Medicine-Development and Alumni Communications

Director of Advancement Communications for the College of Medicine, she oversees and coordinates the communications and marketing needs of the College of Medicine, particularly in the areas of advancement and... Read More

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