When Dylan Siegel found out his buddy Jonah was sick with a very rare liver disease, he wanted to help right away. But helping didn't mean sharing toys or running a lemonade stand on the weekends, as his father suggested. Nope, the fundraising effort he settled on was far more literary: He was going to write a book.
And write a book he did. Dylan, now 7 years old, has since raised over $400,000 with the proceeds from his children's book, titled The Chocolate Bar, and merchandise associated with it. That's more money for research for a cure for Jonah's disease than has ever been raised by grants and foundations. But Dylan isn't done yet; his goal is to raise $1 million for research.
To salute the incredible fundraising effort, the rare diseases advocacy group Global Genes Project honored the two boys with a RARE Champion Award. Congrats, Dylan and Jonah, and good luck!
BY BRITTANY TAYLOR ON 9/26/2013 10:41:00 AM