This week’s Bitch’in Suburbia post was supposed to be a holiday gift guide — that is until a friend handed me a book one of her students had written. By the time I finished reading it, I realized that there was only one present I’d endorse this year: Chocolate Bar book. It’s a delicious read, with a fantastically creative catchphrase, and a kicker that can’t be beat: it was written by first grader Dylan Siegel to raise money for his best friend Jonah Pournazarian, who has a rare liver condition called Glycogen Storage Disease (GSD 1B). I wanted to know more about the author, his BFF/muse/inspiration, and why this book so perfectly embodies the giving spirit.
Bitch’in Suburbia (BIS): So how did you guys meet? Seems like you go back a long time.
Dylan Siegel (DS): Preschool. Mommy & Me, I think.
BIS: You might be the first writer to meet his muse at a Mommy & Me group. So tell me about what Jonah has.
DS: It’s… he gets a lot of shots.
Jonah Pournazarian (JP): Last time I had five shots. (Jonah wears a discrete feeding tube 24 hours a day that every three to four hours delivers a cornstarch solution to his system that keeps the glucose in his body consistent and prevents hypoglycemia and other serious complications from the disease.)
BIS: Dylan, how did you get the idea to write a book and raise money for your friend?
DS: First we were going to do a lemonade stand, but I really didn’t want to. I wanted to write a book, so I planned it, came home, and one day later I did it. I wrote it, did the drawings in pencil, and then went over it with Sharpies. It took two hours. Then Dad’s friends at work printed it up, made it all in color, and stapled it.
BIS: Amazing. It’s taken me five years to write a book and it’s still not published.
(DS & JP stare blankly at the interviewer.)
BIS: Anyhow, back to Chocolate Bar. What does the expression, “that is so chocolate bar” mean? And how did it come to be?
DS: It’s something that’s awesome. My dad said something really funny once, and I said it was so chocolate bar. Like going to Disneyland — that’s so chocolate bar. Or swimming or bowling. So chocolate bar.
BIS: What’s your goal for the book?
DS: I want to make a billion dollars for the cure! Or a million at least. (While this may seem high to some, BIS would like to remind her readers that the recent presidential election cost more than $6 billion and the wars in Iraq and Afghanistan have cost nearly $4 trillion, so not for nothing and out of the mouth of babes, curing a disease for $1 billion seems reasonable.)
BIS: How are you going to do that?
DS: We first sold the books with candy bars at my school’s Mitzvah (Good Deed) Day. A lot of people bought them*, and we signed them. And sometimes we even had to run after people — like a guy in an Audi R8 and another guy in a Ferrari who drove by and said they’d buy our books. They didn’t come back yet, though. That made us furious.
BIS: I’ll bet — and I hope those fancy-car-driving dudes read this interview. So Jonah, how do you help, aside from running after deadbeats?
JP: I sign the books.
BIS: So you’re like the muse AND the sales manager.
JP: Yes. (Giggles.)
BIS: What do you guys like best about each other?
DS: Jonah is my very favorite friend.
JP: Dylan is my best friend.
BIS: Any Chocolate Bar sequels planned?
DS: I’m gonna write another one about friends.
BIS: Sounds like a solid concept — to paraphrase Chocolate Bar, helping your friend is the biggest chocolate bar. So, anything else we should know about you guys? Like favorite class at school?
JP & DS: RECESS!
BIS: Always good to take a break from the book promotion grind, boys. Good luck with your chocolate bar selves!
* At the first sales event for Chocolate Bar, $6,000 worth of books and candy bars (donated by the local Whole Foods market and specially wrapped just for that event) was sold. Since then, an additional $4,000 in book sales has come in through word of mouth and the Chocolate Bar Facebook page. The Siegel and Pournazarian families have worked tirelessly to get the books made and distributed and have paid for all expenses out of pocket and/or got services and materials donated so that ALL PROCEEDS go directly to the Jonah Pournazarian GSD 1B Fund at the University of Florida. (NOTE: The Pournazarians emphasize that not one penny goes to take care of Jonah personally — every cent raised goes to research.) There, Jonah’s doctor, Dr. David Weinstein, director of the University of Florida’s Glycogen Storage Disease Program, is leading a team doing breakthrough research on this rare childhood disease that before 1971 was fatal. Today, the cure is on the horizon: the missing gene and the carrier virus that can deliver the gene effectively have both been identified. And while you probably don’t know anyone with GSD — a disease that affects one in 100,000, or in Jonah’s case, one in 1,000,000 — this research and work has broad implications for a range of other liver diseases. Buy a Chocolate Bar book today by contributing $20 to the Jonah Pournazarian GSD 1B Fund (and mention in the comments section on the form that you want a book!) and help heal the world this holiday season.