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Issue 690 • December 20 - December 26, 2012

Weekly
Beverly Hills
SERVING BEVERLY HILLS • BEVERLYWOOD • LOS ANGELES

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Best friends are so “chocolate bar”
Six-year-old author Dylan Siegel writes a book to find a cure for his best friend’s rare disease

Are our school children safe?
Beverly Hills officials say they’re prepared to take on any emergency
cover stories • pages 8-9

coverstory

BEST FRIENDS ARE SO “CHOCOLATE BAR”
Six-year-old author Dylan Siegel writes a book to find a cure for his best friend’s rare disease
By Andrea Aldana
Seven-year-old Jonah Pournazarian was born with Glycogen Storage Disease 1b, a liver disease that affects one in a million children for which there is no cure. His best friend, six-year-old Dylan Siegel, decided to write a book, which he would sell to raise money for a cure. The result was Chocolate Bar which in less than two months has raised $25,000. A sample page of his book reads, “I like to go to the beach. That is so chocolate bar.” Chocolate Bar is Dylan’s phrase for “awesome.” Dylan and Jonah who are both Beverly Hills residents and students at Stephen S. Wise Temple School met in pre-school. This year, they were placed in the same class and one day following a play date Dylan told his mother, Debra Siegel, that he wanted to make a contribution to Jonah’s fund. “I was putting Dylan to bed that night and he said ‘I’m going to write a book and sell a book and give Jonah all the money for his charity,’ so he started coming up with all these ideas,” said Debra Siegel. Since he was going to bed, she thought he would forget about it, she said. The next day he came home from school and sat down and wrote Chocolate Bar. When he finished, he went up to his mom and said: “Okay mom will you go make copies now?” “We at first weren’t really sure what to do with it, but [Dylan] was so persistent that he just kept going and going and going and saying ‘you got to print this, I want to take it to school and sell it, please please please,’” said David Siegel. “So we got the book laid out and made some copies of it and at his Mitzvah Day at Stephen S. Wise, we had an opportunity to sell the books, [and] Dylan and Jonah sat at the table for a couple of hours and without even taking a break just sold their hearts out and signed autographs and took briefs cont. from page 7 Saban, who was nominated by Hilary Clinton and has been living in New York City for the past few months, said her role as a delegate has been to observe and attend meetings pictures with people and between the Whole Foods chocolate bars that were donated and the books, they sold over $6,000 in one day. That was the first day they were selling.” That day they sold out of all the copies that they had available and in less than two months raised about $20,000 dollars leading up to a book signing event at Barnes and Noble at the Grove on

Sunday, Dec. 14 where they raised close to an additional $5,000. The book sells for $20, but Lora Moradi Pournazarian, a Hawthorne and Beverly High graduate, said that many people have donated more than that. “It was basically a book signing, and I laugh because it’s just so cute that a sixyear-old had a book signing,” said Rabin Pournazarian, Jonah’s father. About 200 people attended the event where both Dylan and Jonah signed books and answered questions. The event included a performance by the Stephen S. Wise Temple School choir and Dylan read his book. Jonah was diagnosed with the disease when he was about six months old. GSD 1b is a liver disease, where the liver is missing an enzyme, so Jonah must eat every three hours so his blood sugar does not fall. He is also missing neutrophils in his white blood count, so he does not have the ability to fight off infections. He wears a gastrointestinal tube through which he eats most of his meals and is on

“It was basically a book signing, and I laugh because it’s just so cute that a six-year-old had a book signing.” -- Rabin Pournazarian

a restrictive diet where he cannot eat sugar, fruit or dairy products. “When Jonah was diagnosed here, the doctor said, ‘Your son is never going be normal, he is never going to play soccer, he’s never going to be like his twin brother [Eli], he’s never going to be able to go to birthday parties,’” said Lora. She called David Weinstein, a physician in Gainesville, Fl., who reassured her Jonah was going to be normal. The Pournazarians created a fund for Jonah about six years ago and every year they fundraise to find a cure for GSD 1b. The money is sent to the University of Florida, and Weinstein uses the funds to conduct research. She said her son just completed an AYSO soccer season and is going to play in the Beverly Hills Basketball league. “Our fundraising is usually limited to sending an email to friends and family and raising money and this year, we just had this amazing idea of this book,” said Rabin. Rabin said 100 percent of the proceeds go to Florida. “I pay for these books out of pocket, the chocolate bars are donated, the wrappers are donated, the t-shirts we were wearing [Sunday] that were really beautiful were donated and it’s really a grassroots effort to raise the million dollars and I really try hard to cover expenses myself, and obviously David helps as well because we want literally every dime to go to Florida,” said Rabin. Dylan’s goal is to raise $1 million for Jonah’s fund, but as his father, David said: “why stop there?” “We want to find a cure, we’re close enough to know that we could and after our cure is found because it’s the liver, the doctor believes it will help with a whole lot of other liver diseases,” said Lora. Debra said she and her husband David were so passionate about the project not only because it would help Jonah, but because it would also empower children. “It’s letting other kids know that they have power and their ideas mean something and can do something big. We also want kids to know what they’re capable of,” said Debra. In addition to hosting the book fair, Barnes and Noble provided a voucher that can be used at checkout, so a portion of Barnes and Noble purchases goes back to Jonah’s Fund. Today, Dec. 20 is the last day to use the voucher. For more information, go to www.facebook.com/chocolatebarbook.

Left to right (clockwise): Rabin, Lora, Rachel, Jonah, Eli Pournazarian on a variety of topics ranging from autism, entrepreneurship, human rights and the status of women. “Being a public delegate during this season was probably a little more unique than other years. Right from the get-go, there were huge global issues happening all over the world,” she said. Saban sat in on various conversations in the General Assembly that included conflicts in Benghazi, Gaza, Mali, Rwanda and Syria. As a delegate she was able to come in contact with several branches of the United Nations, including U.N. Women, headed by Michelle Bachelet and second-in-command Lakshmi Puri. “These women really have brought the issue to the forefront and I would say that

Page 8 • Beverly Hills Weekly