Moving Movement Disorders Research Forward
Date: November 11, 2013
When Gwen Graves’ daughter was 4 years old, her pre-K teacher pointed out the child’s unusual movements. She repeatedly flexed her fingers open and shut, her arms stiffened downward and her chin tightened into a grimace. The movements lasted for seconds and usually occurred when she was excited.
Graves hadn’t noticed her daughter’s unusual movements. “I just thought, this is what kids do,” she says. But when she videotaped her daughter to see how often the movements occurred, she was shocked at their frequency. “It really surprised me,” she says.
Within a week, Graves’ daughter had an appointment with a local neurologist and a diagnosis: a harmless tic that there was no treatment for. But as the months after the appointment wore on, she wondered more and more: What if it wasn’t just a tic? Searching online for the best child neurologists for movement disorders, Graves found Johns Hopkins neurologist Harvey Singer. Baltimore was a far trek from the Graves family’s home in Baton Rouge, La. But if they traveled for vacation, Gwen reasoned with her husband, Todd, they could travel to get a second opinion for their daughter.
Sure enough, Singer confirmed, Graves’ daughter didn’t have a simple tic, but something more complex. He diagnosed her with nonautistic motor stereotypy, a group of conditions characterized by patterned, repetitive, rhythmic and involuntary movements that stop with distraction but persist over time. Though exact numbers of children with these conditions aren’t known, estimates suggest up to 4 percent of preschool children have a form of complex motor stereotypy. Many children find ways to manage their movements as they grow older, but research shows that children do not outgrow this movement disorder.
With a formal and satisfactory medical diagnosis, Graves and her daughter headed home. But after several years, they decided to come back for another visit with Singer. Graves’ daughter not only received additional confirmation of the diagnosis in this evaluation, but also participated in research that Singer is heading to better understand complex motor stereotypies, a step toward developing new and more effective treatments. It was this appointment that showed Graves the promise of Singer’s research, she says, as well as a way to give back.
“Todd has grown his business from the ground up,” Graves says. Her husband owns Raising Cane’s, a chain of restaurants scattered across the country that serves chicken fingers meals. “Philanthropy is super important to us, and this cause is something near and dear to my heart.”
Though other diseases attract an enormous amount of research funding, says Singer’s research coordinator Tina Kline, complex motor stereotypies are relatively obscure, even though they can deeply affect children’s lives. “Most of the children we see and their families have never even heard of the disorder,” she says. “They can feel very isolated and alone. We serve a population that is completely underserved by anyone else.”
Wanting to support Singer’s efforts, the Graves donated funds to help buy a high-performance liquid chromatography system that will help Singer’s team learn which brain chemicals are responsible for complex motor sterotypies’ involuntary movements.
“This equipment will speed our search for the cause of these conditions,” Kline explains. “Without the equipment to continue our research, we can’t make any advances.”
In addition, the Graves are also donating the same plush puppies that they sell in their restaurants, named after Todd’s dog, Cane—a pet therapy dog who visits patients at their local children’s hospital. Patients including Graves’ daughter participate in MRIs that are also part of Singer’s research, a procedure that can be frightening for some kids. Having a stuffed puppy to hold can be comforting, Graves reasoned, an idea that’s already proving true with study subjects.
“They’ve been so well received by these children,” Kline says. “We’re grateful for everything that can help advance this research and improve our patients’ lives.”
Support research into motor stereotypies: 443-287-7877