Community4Celiac event raises funds to start celiac program at Cohen Children's Medical Center
Raelynn Sinulee, 9, of Port Jefferson Station, tries the trampoline with the help of volunteer Wanda Rincon of Smithtown during the 2nd Celiac Disease Family Fun Day in Melville. Credit: Rick Kopstein
The initial shock of switching to a gluten-free diet to counter the effects of celiac disease can be challenging and isolating for children, experts say.
Jude Leibson, 10, has dealt with the disease for the past three years. He found support, he said, from his friend Casey Schlow, 10, who had a four-year head start living gluten-free.
"He's the one who taught me a lot," Jude said Saturday at the Celiac Disease Family Fun Day in Melville.
"It's nice having a friend that also has it," Schlow added.
The second annual event at Driftwood Day Camp brought together children from across the area who have the autoimmune disease. The event, hosted by the nonprofit Community4Celiac, allowed kids of all ages to experience the camp's myriad activities and enjoy food from vendors without any fear of gluten.
"We want to give people the day off, to be gluten-free and not have a worry in the world," said Marci Launer, who founded Community4Celiac along with Jude's mother, Staci Leibson.
Last year's inaugural event raised about $50,000 and the organizers expected this year's event to surpass $60,000. Proceeds from Saturday will go toward starting a celiac program at Cohen Children's Medical Center, said Dr. Ying Lu of Northwell Health, who specializes in pediatric gastroenterology.
Lu said the program will focus on four pillars: research, diagnostic services, nutritionists who can give personalized dietary advice and support groups for children and their families.
Celiac disease causes an immune reaction when a person ingests gluten that damages the small intestine, according to the Mayo Clinic, and can cause symptoms like abdominal pain, nausea and diarrhea. Lu said the disease affects about 1% of the population.
"Getting diagnosed with celiac disease really rocks your world," said Launer, 38, of Woodbury, who was diagnosed 15 years ago. "It's your full-time job before anything else."
Her daughter, Josie, 5, was diagnosed with the hereditary disease in January, she said.
Leibson, 40, of Woodbury, said she turned to Launer for advice when her son was diagnosed. She said she discovered different organizations that support people with celiac disease, but none locally focused on pediatrics.
Their "dream" when founding Community4Celiac was to not only raise money, but to "give the members of the celiac community — the children — one day to feel typical," Leibson said.
Steve Edelson of Port Washington served homemade, gluten-free ice cream sandwiches known as smushts. The business he founded at home during the pandemic, Smusht, always features gluten-free options, he said.
"Some of the most rewarding parts are the emails that you get from parents that are like, 'My kid never had an ice cream sandwich before,' " he said.
Brandon Berg, 14, of Syosset said he was diagnosed with celiac disease in fourth grade.
"Coming to an event like this, it's great to feel that there's a community behind you that's trying to change things," he said.
He said it was a "tough adjustment" when he could no longer eat some of his favorite foods like pizza.
"I haven't had a garlic knot in a minute," he said, "and that's one of the things I miss most."
Joe Werkmeister joined Newsday in 2022 and covers Suffolk County government and politics. He is a graduate of St. Bonaventure University and previously worked as the editor of two North Fork community newspapers.
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