celiac diseas awareness

For some kids, having celiac disease can make them bashful or self-conscious, resentful that they have to be different at a time in their lives when all they want to do is fit in. For others, it can feel like a badge of
honor—something that makes them unique, and propels them to help others in the celiac community. Over the course of the five years since she was diagnosed, Skylar Weitz, now 11, has undergone a metamorphosis from the former to the latter. “I used to be shy about having celiac, but now I just want people to know about it and realize how it affects people on a day-to-day basis,” she says. So last fall, the Long Island-based 5^th-grader started making and selling gorgeous celiac awareness bracelets. Her goal is to increase awareness for celiac disease while raising money for Celiac Disease Foundation (CDF). “Skylar’s commitment to raising awareness of celiac disease and the need for a cure is an inspiring example of how every child has the power to make a difference,” says Marilyn G. Geller, CDF’s CEO. “Ending the needless suffering of millions with celiac disease is a massive undertaking. Through efforts like Skylar’s, together we can improve the quality of life and the long-term prognosis for those we love.” Since last fall, Skylar has raised about $3,000 to support CDF’s goal of finding a cure; looking ahead, she plans to donate proceeds to the Celiac Disease Center at Columbia University in New York, as well.

And Skylar’s not messing around when it comes to style: Her wares are a far cry from de rigeur rubber charity bands. She—along with the help of her squad: her mom Shari, sister Hailey, aunt Jaime, cousins and grandmother—hand-makes each bracelet out of a range of colored gemstones in both adult and kid sizes. Skylar’s aunt, Alisha Grimm, a jewelry designer, lends her expertise. “So many people—myself included, prior to Skylar’s diagnosis—are naïve about how much of an impact celiac disease has on a person’s day-to-day life,” Alisha says. “And it upsets me that there are people who think it’s not a legitimate disease. So when Skylar asked me if we could make bracelets to raise awareness and funds, I said absolutely. I’m just so proud of her.”

“I just want to help find a cure,” says Skylar. You can find out more about the bracelets and how to order them by visiting The Skylar Project’s Facebook page. With Celiac Awareness Month coming up in May, it’s the perfect time to wear them
as your celiac badge of honor.

Jessica Press is a writer whose work appears in Redbook, Parents, O, The Oprah Magazine and more.

What is Celiac Disease?

Neurological Symptoms of Celiac Disease

The Basic Gluten-Free Diet

When my daughter, Amanda, was diagnosed with celiac disease 16 years ago, we were told about one in 2,500 people had it. Then an important study found that actually one in 133 people have celiac disease.

Being a word person — honestly — the numbers were still hard for me to picture clearly. How many people would that likely be in a room, in a school, in a stadium, in a country, in the world?

But I got a better focus when I went to the fifth birthday party for the National Foundation for Celiac Awareness in Philadelphia last week.

Nearly 1,400 people packed the concourse of the Wachovia Center, usually home to the Philadelphia Flyers ice hockey team, to feast on gluten-free nibbles offered by 35 Philly-area restaurants. When you see a group that big and enthusiastic, all focused on the gluten-free diet and lifestyle, the numbers take a new shape and meaning.

What they meant on this particular evening was a crowd welcomed and catered to by mainstream chefs. Each restaurant reportedly had to prepare at least 1,200 samples of whatever dish they were offering. The chefs were not shy about trying new and exciting things. There was octopus salad, and duck and lobster with macaroni and cheese. All delicious. Even better each restaurant committed to permanently add gluten-free dishes to its menu.

There’s one more important thing to say about that night and numbers — NFCA raised $340,000 for programs to spread awareness of celiac disease. That can only mean an even bigger crowd next time. Congratulations to NFCA and happy birthday!