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8-Year-Old Raises $1 Million To Help Cure His Best Friend’s Rare Disease

Dylan Siegel Inspires Kids around the Globe to Give Back

Los Angeles, CA (December 15, 2014) – Dylan Siegel, eight-year old self published author of “Chocolate Bar,” the picture book written to help find a cure for his best friend’s rare disease, has officially passed the $1 million goal he set two years ago. This story, especially sweet as it comes on the heels of the holidays, was made even sweeter by the outpouring of support and funds raised from school children around the world. Schools from locations such as Belo Horizonte, Brazil, New Braunfels, Texas and Los Angeles, California have, rallied in support of Dylan’s goal to raise enough money to cure the rare genetic liver condition from which his best friend Jonah Pournazarian suffers.

Written and published in late 2012, “Chocolate Bar” was first sold to family and friends, and is now available at local events throughout the country and online at http://www.chocolatebarbook.com. To date, nearly 25,000 copies have been sold in all 50 U.S. states and more than 60 countries worldwide. The book has officially raised over $1 million with 100% of every dollar raised being donated to the University of Florida, where research for the cure is nearly complete.

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“I am so happy that we finally reached my million dollar goal,” says Dylan Siegel, author of “Chocolate Bar”, “and that kids around the world have been inspired by my story. I will continue to raise money until Jonah’s disease is cured forever.”

Schools like Wise School in California and Oak Creek Elementary in Texas challenged their entire school district to match the $2,000 in funds raised by their children and helped push Dylan’s total over the top. “It has been super fun…and the chocolate bar buzz continues to seize our hallways. Dylan has changed over 500 kids lives here at Oak Creek and challenged them to give without receiving and put others needs before their own”, says Julie Brawner a facilitator at Oak Creek Elementary in New Braunfels, Texas.

The funds raised have financed the hiring of a new geneticist, paid for studies resulting in new gene therapy treatments and kept the University of Florida GSD research facility open and on track to clinical trials and even a cure within several years.

“We are so proud not only of Dylan and his efforts but of the tens of thousands of people who have stepped up to help us reach this important milestone,” said Debra Siegel, Dylan’s mother. “Dylan has started a movement that we will continue to build. We are hearing from schools all around the world that are using Dylan’s story to inspire their kids and show them what they are capable of. It’s a lesson of friendship and the power of one.”

For more information about “Chocolate Bar,” please visit www.chocolatebarbook.com. To keep up-to-date on the latest news for Dylan, Jonah and “Chocolate Bar,” follow on Facebook, Instagram and Twitter. Shop for sweet products at www.chocolatebarbook.com/store.

About “Chocolate Bar”

“Chocolate Bar” is a book born from the imagination of eight-year-old Dylan Siegel who dreams that his words and pictures will help find a cure for his best friend Jonah’s rare disease and change the world, one book at a time. The goal is to celebrate Dylan and Jonah’s story and help kids everywhere discover the power of their ideas and how they can make a positive impact. Independently published and distributed at the end of 2012 when Dylan was just six, “Chocolate Bar, the book” has sold nearly 25,000 copies and raised $1,000,000 with donations coming from all 50 states and more than 60 countries. An unprecedented 100% of every dollar raised goes directly to the Jonah Pournazarian GSD 1B Research Fund at the University of Florida where Chocolate Bar has been credited with putting a cure to the disease on the horizon. Dylan is the recipient of Global Genes’ Champions of Hope award, University of Florida’s first ever Young Philanthropist Award, Charlotte Bacon Acts of Kindness Award the Zimmer Museum’s first ever Random Acts of Kid-ness Award. For more information please visit www.ChocolateBarBook.com.

About Glycogen Storage Disease

Glycogen Storage Disease is an incurable genetic condition that sees occurrences in every part of the world. (Disease Frequency: 1 in 100,000 in the general population.) Children born with this disease lack the liver enzyme that turns glycogen into glucose, rendering them unable to regulate their blood sugar levels. Untreated, their blood sugar can drop dangerously low, resulting in severe hypoglycemia, seizures, and even death. Currently, the only known treatment is a mixture of store bought cornstarch and water, which must be consumed every few hours around the clock (generally through a G-tube in the patient’s abdomen). Cornstarch takes longer for the body to metabolize, maintaining blood sugar levels for an extended period of time. Dylan’s best friend Jonah has GSD 1b, an even more rare version of the disease making him one in a million. Children with GSD Type 1b also have neutropenia, very low white blood cell counts, and therefore struggle with fighting infections. Even mild infections can mean a hospital visit for weeks at a time. One missed feeding of cornstarch and the child risks seizure, coma or even death, an occurrence seen too often. Living by the clock in a constant state of paranoia is the daily regimen. While the demands of this disease on families are not a realistic proposition, they are unfortunately the reality.

3 Responses to 8-Year-Old Raises $1 Million To Help Cure His Best Friend’s Rare Disease

  • Wonderful child! You can see God in this kid.

    I have a 12 yr old daughter , loving kid.Can relate to a child’s pure and unadulterated emotions and thinking.

  • there is a God of small things. It is a truly wonderful experience, to be exposed to life’s challenges in overcoming adversity- thru the words and actions of a child. The power of one !

  • What a great read to start the day!

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