‘We help girls become leaders, to use their voice and take charge of their course of care while helping others.’
“Our daughter Leah was diagnosed with scoliosis in 2004. She was turning 12 and going into middle school and had to wear a hard plastic back brace 24/7 in an attempt to avoid spine surgery. She said she wanted to talk with other kids dealing with wearing a brace and worrying about surgery, so I took her to a support meeting at a local hospital. We entered a room with all adults, some of whom had more advanced conditions. As we left the meeting, she said she really liked the meeting but wished there were one just like that for kids. I told her if she wanted, she could start one.
“I helped her create a flyer that she passed out to her doctors. In 2006, Leah held her first peer-led meeting in our backyard with three other girls. I was so focused on helping her, it hadn’t occurred to me that the moms might also want to meet. Being a clinical social worker, it was a comfortable role, so while Leah ran a kids group, I held a parent meeting. That’s how Curvy Girls got started.
“In 2009, Leah was featured on Nickelodeon’s “HALO Awards Show” and appeared on national TV. The show made kids think scoliosis and bracing were cool, rather than something to hide. Girls from around the country emailed asking how to start their own group. We became a nonprofit and provided support and guidance to girls around the world. We held our first international convention in 2012, bringing together 150 girls and parents for community building and leadership training.
“This coming June, we will hold our fifth Biennial International Curvy Girls Scoliosis Convention on Long Island. We now have a mentor program, where girls who started with us as young teens train new leaders. We want kids and families to know they are not alone! We recently published our second book, ‘Straight Talk Scoliosis,’ to address the challenges of scoliosis, and created a scoliosis activity book for younger kids, ‘Finding Curvy Girls.’ While doing research for our first book, co-author Terry Mulvaney learned about a European-based physical therapy that complements bracing. Since that time, CG, headed by Terry, along with her daughter Rachel, have been the voices of change for the course of care in the U.S. The impact is widespread.”
“Curvy Girls is a peer-run support program for girls with scoliosis that teaches girls how to be leaders in their community. But CG is about more than scoliosis. It’s about empowering girls to go beyond themselves and experience the impact of making a difference. It’s about turning challenges into triumphs. It’s about teaching lifelong coping skills, about resilience and personal growth.
“Group is the most effective mode of impact for teens because it uses the power of positive peer pressure. We believe in face-to-face meetings because it’s important, especially in this day and age, for young people to connect. During COVID, we pivoted virtually and now do a combo of in-person and online. While Leah has aged out of leading and works full time in advertising, she remains the board president, overseeing 100 groups across 21 countries and having touched upwards of 5,000 kids and parents since our inception. Each year, one out of 40 kids will be diagnosed with scoliosis, so there will always be new members to support.
“While it didn’t occur to me back in 2006 that Curvy Girls would be what it is today, it filled an unmet need in the scoliosis world. We couldn’t understand why there wasn’t a support group for kids. I wanted to empower Leah to have the best tools to cope with being a middle schooler who worried about fitting in. Leah went away to college and I got joy from helping the next set of leaders. The growth was organic; we just responded to the needs as they presented. Leah made it clear what she needed, and now we have this extended reach around the world. We help girls become leaders, to use their voice and take charge of their course of care while helping others. You know that the best way to lift yourself up when feeling down is to help someone else! We teach our leaders to pass on the message that today you show up for yourself, and tomorrow you do it for the next girl. That way it’s contagious!”
Interviewed by Liza Burby