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Scoliosis convention meets this weekend on LI

Dana Fauth of Fort Salonga took this self-portrait;

Dana Fauth of Fort Salonga took this self-portrait; it is the cover of the book "Straight Talk With the Curvy Girls." (Undated)

Curvy Girls from the United States and abroad will congregate in Hauppauge this weekend for the second biannual International Scoliosis Convention.

The convention, which starts Sunday and ends Tuesday, includes panels and presentations by doctors and other clinicians about bracing, surgery and physical therapy options for girls with scoliosis, a back condition that causes abnormal curving of the spine. Workshops will address stress management, being an effective group leader or member, and healing through art.

“When girls are diagnosed [they are] very quiet about it,” said Curvy Girls founder Leah Stoltz of Smithtown. “I didn’t know how to express my frustration or sadness.”

During the convention at the Hyatt Regency hotel in Hauppauge, girls ages 7 to their early 20s will have a chance to talk to each other about their struggles, such as how to sit comfortably with a brace, what to wear over it, and how to tell their friends what it is.

Stoltz started Curvy Girls support group and an accompanying group for parents of girls with scoliosis when she was 13, after her own diagnosis. When she was a senior in high school, TeenNick honored her with a HALO Award, presented to teens who help and lead others. The award created a lot of media attention, said Stoltz, now 21 and recently graduated from American University in Washington, D.C.

“Girls all around the country and eventually the world started contacting me, saying I need that in my area,” Stoltz said. There are now 66 Curvy Girls chapters in more than 30 states as well as overseas in Brazil, Spain, Canada, Australia and England. Members from Canada and the London group leader will attend this weekend’s convention.

Even as more groups cropped up, Stoltz realized that some girls were still too far away to make meetings, and others needed help with leadership skills. The first convention, in 2012 on Long Island, was meant to bring everyone into one room for educational and leadership workshops.

“It’s not a medical convention. It’s a convention for the girls,” said Stoltz, who expects 230 attendees at this weekend's event.

Topics for parents include emerging science and advocating for their kids at school. Danielle Frank’s 12-year-old daughter, Alexa, was diagnosed a year ago and participates in the Long Island Curvy Girls chapter. Frank, from Syosset, is looking forward to speaking to other parents who are in a similar boat. She said she is particularly interested in a panel titled “Walk a Mile in Our Brace,” to be led by Stoltz and Curvy Girls vice president Rachel Mulvaney of Mount Sinai.

“Leah has been through it and she’s older,” Frank said. “I’m hoping to get some of her insight to help me help Alexa.”

The biggest event of the convention is the Monday evening fashion show. “This medical condition is one that everybody can see, especially when you put a brace on,” said Dr. Laurence Mermelstein of Long Island Spine Specialists in Commack, where Stoltz was treated and one of the convention sponsors. “These girls are so self-conscious,” he says. “For them to to put on a fashion show to show how beautiful and self-confident they are is the best part of the weekend.”

The convention coincides with National Scoliosis Awareness Month and starts a day after International Scoliosis Awareness Day on June 28. Next year, Curvy Girls is planning an International Scoliosis Awareness Walk on June 27, 2015.

The Long Island chapter of Curvy Girls -- now co-led by Jenny Elf, 19, of East Rockaway and Katie Bradley, 17, of Babylon -- is still the largest, Stoltz said. Monthly meetings bring roughly 30 girls from all over the Island and sometimes Queens. They still gather in Stoltz’s living room in Smithtown.

One of Stoltz’s favorite things about the convention is “that girls don’t hate their scoliosis as much because of all the great things that come out of it.” She has seen them leave feeling empowered, whether it’s to lead their own Curvy Girls chapter or to advocate for school scoliosis screenings. They leave wanting “to really take a stance and make scoliosis something positive in their life.”

Read more about Leah Stoltz, Curvy Girls, and the book they published ("Straight Talk With the Curvy Girls: Scoliosis -- Brace Yourself for What You Need to Know") in Newsday here.

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