Just about a year ago, my BBF told me about two little boys in her first grade class who embodied the giving spirit. Dylan Siegel had written a book called, “Chocolate Bar” with the intention of raising $1,000,000 to find a cure for his friend Jonah Pournazarian’s rare liver disease, Glycogen Storage Disease 1B. In my opinion, nothing’s more bitch’in than stepping up and taking action, so I interviewed the Chocolate Bar Book boys to find out more. Much has changed since then, and now it’s not just a nice local story about a couple of great kids and their families; it’s become a global phenomenon that just shows to go ya that one little kernel of kindness can change the entire world.
Bitch’in Suburbia (BIS): It’s been about a year since we last spoke — how goes the fundraising for the cure? How much have you raised?
Dylan Siegel (DS): Almost $500,000.
BIS: All on $20 books?
DS: Well, we also have bracelets and some other stuff now.
Jack Siegel (Dylan’s brother): I once sold a chocolate bar to a lady for $30!
BIS: With salesmen like that, I can see how you guys have gotten half way to your goal in just a year. For people who don’t know, what happens to the money you raise?
DS: It all goes to Jonah’s Foundation to find a cure. GSD 1a has a lot of money, but GSD 1b pretty much only has us.
BIS: That is a very media-ready answer, Dylan. Seems like you’re an old pro at this — you too, Jonah…
Jonah Pournazarian (JP): I like being on TV.
BIS: In fact, you guys have gotten a ton of international press and made appearances on some pretty major TV shows — The Doctors, NBC Nightly News, ABC News, and The Jeff Probst Show, just to name a few. Of all the women to interview you in the past year — for example, me (first) and also Chelsea Clinton, who was prettiest?
JP: (Rolls eyes.)
DS: (Shrugs shoulders, looks confused, frightened.)
BIS: Nevermind, that’s not important. How about awards? Anyone aware of how amazing you guys are?
DS: Jonah and I just went to Newport Beach to get an award. It was fun — I told everyone to buy a book and then we went to the Cheesecake Factory. And in February we go to Florida.
Note: In September they boys were honored in Newport Beach at a 500-person black tie dinner (where Dylan said a few words before heading over to the Cheesecake Factory =) with the Global Genes/RARE Project “Champions of Hope” award, and in February they will travel to the University of Florida to receive Young Philanthropist awards.
BIS: You guys are very jet set! University of Florida is where Dr. David Weinstein is conducting his research on GSD, and it’s also where all the money you raise from Chocolate Bar book goes — how’s Dr. Weinstein doing with all of that?
Debra Siegel (DeS, Dylan’s mother): Dr. Weinstein has been quoted as saying that they were close to shutting down his operation when Chocolate Bar came along. Now that we’ve raised so much money — according to Dr. Weinstein, more than all the money EVER raised for GSD 1b research combined — that they are able to move closer to a cure.
Rabin Pournazarian (RP; Jonah’s dad): People with GSD are missing the enzyme in their liver that allows them to maintain normal blood sugar levels between meals (hence, hypoglycemia). Research has identified the missing enzyme a while ago; now Dr. Weinstein is working on how to deliver that enzyme to patients. A cure is in sight; hopefully it will be here within the next five years.
BIS: And all that Dr. Weinstein needs to get to end game is money.
RP: Yes, it takes millions to get FDA approval.
DeS: And that’s what Chocolate Bar book is doing. We’ve sold close to 15,000 books to people in all 50 states and over 40 countries. We have nearly 20,000 followers on Facebook. The word is spreading.
BIS: Maybe it’s time for a sequel. Dylan, any thoughts on that?
DS: I’m thinking about popcorn. That means yummy. And then there are gummy bears…
(DS & JP start cracking up.)
DeS: We haven’t figured out what gummy bears are yet.
BIS: Any author worth his salt will add new layers of intrigue and excitement in a sequel, so I won’t probe any further for now. What else is going on with Chocolate Bar?
DS: I’m coming out with a Chocolate Bar app soon, where I read the book and there are sound effects and it’s cool.
DeS: The book is also going to be published in Brazil (in Portuguese).
BIS: That is amazing! You guys have accomplished so much in just a year — I can’t wait to follow this story all the way through to when Jonah and all the GSD 1b patients out there are cured. Any final words of wisdom?
JP: I told my mom, no ambulance rides this year. And no hospitals.
BIS: Those are some very wise words, Jonah. How about you, Dylan?
DS: Do what you have in mind, and something will happen — something good. Then you will be happy that you made a change.
If you’d like to help Dylan and Jonah in their quest to fund the cure for GSD 1b, please buy a Chocolate Bar book. All of the proceeds go directly to Jonah’s fund at the University of Florida — the Siegel and Pournazarian families donate all of their time and all of the materials so every cent is dedicated to finding a cure.
And in 2014, dare to be the change you wish to see in the world — Gandhi said it, but Dylan, Jonah, and their families are doing it. Taking action out of love and friendship is truly SO CHOCOLATE BAR!