One sweet honor

UF recognizes 7-year-olds who have raised more than $750,000 for medical research

By Styliana Resvanis

Dylan Siegel (front) wrote the book “Chocolate Bar” to help raise money for research to find a cure for glycogen storage disease, which his best friend Jonah Pournazarian has. The pair, shown here with Dr. David Weinstein and ABC News correspondent Steve Osunami,  were recently honored for their philanthropic efforts.

To Dylan Siegel, “chocolate bar” means awesome. And while he likes visiting theme parks, going to the beach and playing at the arcade, he thinks helping a friend is the biggest chocolate bar of all.

On Feb. 21, UF honored 7-year-old Dylan and his best friend, 8-year-old Jonah Pournazarian, for their sweet efforts to find a cure for a rare disease.

The California boys received UF’s first-ever Young Philanthropist Award for their vision, generosity and leadership during the university’s inaugural Academy of Golden Gators celebration.

Their philanthropic work centers around a 14-page book Dylan wrote in 2012 to raise money to fight glycogen storage disease, the rare genetic liver condition Jonah suffers from. His goal? To raise $1 million through sales of “Chocolate Bar.”

“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.”

While the fundraiser began with 200 copies of “Chocolate Bar” sold at a school event in 2012, the book’s revenue reached a $750,000 milestone on Feb. 28 — also known as Rare Disease Day, a day organized to raise awareness for rare illnesses such as glycogen storage disease and their impact on patients’ lives.

Glycogen storage disease is an inherited disorder that disrupts how the body uses sugar for energy. Children like Jonah receive doses of water and cornstarch at scheduled intervals throughout the day and night because the mixture 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.

About one in 100,000 people live with the disease, but Jonah’s type, Type 1b, is a one-in-a-million case. Glycogen storage disease Type 1b means a constant battle against dangerously low blood sugar levels and infection, as those who suffer from it have low white blood cell counts that can cause mild health issues to quickly escalate into hospital visits.

“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 David Weinstein, M.D., a professor of pediatrics in the UF College of Medicine and director of the UF Glycogen Storage Disease Program, the largest program of its type 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 glycogen storage disease, which creates serious and often fatal health risks. One hundred percent of the book’s proceeds support Weinstein’s research as part of UF’s Glycogen Storage Disease Program.

The families have shared their story via major news outlets such as “NBC Nightly News,” The Huffington Post, “Fox News,” People magazine and, most recently, “ABC World News with Diane Sawyer.” Through their efforts the families hope to not only cure GSD Type 1b, but also spread the message that children of any age can create change.

And Dylan, for one, believes his fundraiser will end in sweet success. In fact, when asked by ABC’s Steve Osunsami where he thinks he and Jonah will be 10 to 15 years from now, he said the two would be in high school and Jonah’s illness would likely be cured. Jonah’s response to the question? “Friends.”

“Chocolate Bar” was born out of a desire to help a friend in need, but the book is anything but sad. Quite the opposite, it details what Dylan considers awesome, like going swimming and visiting Disneyland and Universal Studios.

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.