Kids Raise Funds for Rare Disease Research

When best friends Jonah and Dylan first appeared on The Doctors in February 2013, they were given the Best Friends for Health award for their touching example of the true meaning of friendship. Jonah, then age 7, was born with a rare liver disorder called glycogen storage disease 1B, which can cause a dangerous buildup of glucose in the body. It affects only one in a million children worldwide. The only course of treatment to prevent seizures or even death for Jonah involves consuming a special cornstarch mixture every three hours and avoiding any form of sugar that his liver cannot absorb. 

To raise money for research to help his friend, Dylan, then age 6, decided to write and sell a book called Chocolate Bar, a story based on an expression he made up to describe happiness. At the time of their first appearance, the book had raised nearly $30,000.

Today, the boys, now ages 8 and 9, join ER physician Dr. Travis Stork and plastic surgeon Dr. Andrew Ordon onstage to reveal that their efforts have now raised more than $1 million for glycogen storage disease research.

“Prior to the Chocolate Bar, there were no foundations supporting glycogen storage disease research,” pediatric endocrinologist Dr. David Weinstein says. “As a result, there was no research, and if there’s no research, there’s no hope. As a result of the Chocolate Bar, we’ve been able to create teams to work on this disease.” 

Dr. Weinstein says that researchers, including Dr. Youngmok Lee from the National Institutes of Health, have used funding from Chocolate Bar to support gene therapy trials, which have successfully treated mice with the disease. 

Dr. Travis commends the boys for their good work and surprises them with a free trip to Disneyland.

To learn more about Chocolate Bar and donate to the cause, visit ChocolateBarBook.com.

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