Boy鈥檚 鈥淐hocolate Bar鈥� book raises $500,000 to fight his friend鈥檚 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鈥檚 first ever Young Philanthropist Award for their vision, generosity and leadership during the university鈥檚 inaugural Academy of Golden Gators celebration on Feb. 21.
The boys鈥� 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 鈥淐hocolate Bar,鈥� 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鈥� lives.
鈥淒ylan and Jonah are exceptional kids,鈥� said UF President Bernie Machen. 鈥淭heir 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.鈥�
About one in 100,000 people have GSD, but Jonah鈥檚 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.
鈥淚n 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,鈥� said UF pediatrician , M.D., director of the largest GSD program in the world. 鈥淲hen we finally find a cure, we鈥檒l be thanking Dylan for pushing the medical community to make it happen.鈥�
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鈥檚 proceeds are donated to Weinstein鈥檚 research as part of UF鈥檚 Glycogen Storage Disease Program.
鈥淐hocolate Bar,鈥� which means 鈥渁wesome鈥� 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.
鈥淲e are so moved by this honor and all the global awareness Dylan鈥檚 book has created to shine a light on the need for a cure to glycogen storage disease,鈥� said Debra Siegel, Dylan鈥檚 mother. 鈥淭he University of Florida has provided unprecedented support and world-class research, putting a cure in range.鈥�
For more information about 鈥淐hocolate Bar,鈥� visit