Early-Stage Studies Give Kids—and Research—a Chance

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Penny uses PediaCORE with physical therapist Kelsey Wolfe.
Penny uses PediaCORE with physical therapist Kelsey Wolfe.

As director of Kennedy Krieger Institute’s Center for Movement Studies, Dr. Amy Bastian leads the Institute’s search for the answer to a seemingly simple—but in truth, quite complex—question: How do our brains control movement and learn new movement patterns?

Dr. Bastian uses computerized movement tracking techniques, noninvasive brain stimulation, robotics and—increasingly—virtual reality devices to study walking and reaching movements. Ultimately, she and her colleagues want to develop new approaches for treating movement disorders like cerebral palsy, and for rehabilitation after a brain or spinal cord injury.

“More and more, we’re using virtual reality to create situations in which children with movement disorders and injuries are moving their bodies in ways that are new to them, or which they haven’t done since before an injury,” says Dr. Bastian, who serves as the Institute’s chief science officer. “The beauty of virtual reality is that you can create environments you can’t create in the real world, and they can be very powerful drivers for learning complex motor skills.”

Virtual reality has been used in recent years for rehabilitation in adults, teens and older children, but not as much for children under 6 years old. “But that’s the time in life when some of the most important pathways for controlling movement are established,” Dr. Bastian explains.

‘Philanthropy Is Key’

In 2018, Dr. Bastian pitched an idea to a group of students at The Johns Hopkins University’s Center for Bioengineering Innovation and Design. She wanted a device that would use virtual reality to help young children practice reaching while standing or sitting on their own. Rising to the challenge, the students developed a prototype with a large, custom-built interactive screen and a suite of custom video games to engage young children in these movements. The students worked closely with physical therapists at Kennedy Krieger to include the therapists’ input on exactly what movements the device—named PediaCORE™—should encourage children to do.

PediaCORE is now in the middle stages of clinical testing, and is already demonstrating that it can help young children with movement disorders. Clinical trials are slated to finish within a couple of years, after which it’s hoped that PediaCORE will be finalized and used on a large scale. But getting PediaCORE to this point has required a significant amount of funding.

“For this work, philanthropy is key,” Dr. Bastian says. “To apply for a grant from the federal government, you need good preliminary data, which takes years to generate after you build the device.”

Dr. Bastian and her team first received funding for the project from Joey’s Foundation, a nonprofit organization established by Robert and Janet Sloan to provide support for individuals, organizations and other entities engaged in research, education or innovation related to children with brain injuries. They named the foundation after their grandson Joey, who experienced a brain injury at a young age. Robert is president and CEO of the foundation, as well as a member of Kennedy Krieger’s board of directors and a former CEO of Sibley Memorial Hospital in Washington, D.C.

“The Sloans were so enthusiastic about having this talented group of students develop PediaCORE, and they saw its real potential,” Dr. Bastian says. At one of her meetings with the Sloans, they brought Joey in to use the prototype, and he loved it. “Even when he was getting tired, he still wanted to keep playing the PediaCORE games,” she says.

“We support PediaCORE because we see the potential benefits of this device and its innovative way to provide therapy,” the Sloans say. “It is important to us to help others because others have been helpful to us.”

Support for PediaCORE’s development has also come from the Women’s Initiative Network (WIN) for Kennedy Krieger Institute, a volunteer organization dedicated to raising awareness and funds for Kennedy Krieger. Every year, WIN chooses a program or department at Kennedy Krieger for which to raise money. In 2021, they selected PediaCORE.

Cynthia Cavanaugh visits with Geuko.
Cynthia Cavanaugh
visits with Geuko.

“Research is an integral aspect of healthcare and is often overlooked in the world of philanthropy,” explains WIN Co-President Cynthia Cavanaugh. “Learning how many children can benefit from PediaCORE was eye-opening.” WIN was slated to hold a major fundraiser for PediaCORE in the spring of 2021, but due to the pandemic, the event was delayed. WIN members, knowing those funds were crucial, refused to delay the fundraising portion of that event.

“When we found out that WIN was going ahead with the fundraiser, we were so excited because it meant we could actually begin the work necessary to do the right kind of clinical trial,” Dr. Bastian says. “You can’t make arbitrary decisions about how many times a child should train with PediaCORE and how many minutes each session should last. We have to do that work to know what kind of dose of therapy is appropriate to drive change, and that takes time and funding.”

“Watching the progress they’ve made on PediaCORE in the past few months has been amazing,” Cynthia says. “Seeing the children interact with the program and improve even within one individual session warms my heart. It’s been fascinating to realize the difference our funding has made to the project in such a short amount of time.”

‘The Very Smallest Piece’

“When donors support our work, they allow us to do something that we wouldn’t have been able to do otherwise,” says rehabilitation physician Dr. Stacy Suskauer, who directs the Institute’s Brain Injury Clinical Research Center. “A lot of really important research starts with the very smallest piece, and that isn’t something that the federal government will necessarily fund.”

Stacy Suskauer headshot.
Dr. Stacy Suskauer

To get that federal funding, researchers need to present data from preliminary studies to show the work is heading in the right direction.

When donors provide funding for early-stage research, they allow us to innovate and expand what we do.” – Dr. Stacy Suskauer

“Donors can fund equipment for research and also time for research,” adds neuropsychologist Dr. Beth S. Slomine, the Institute’s director of rehabilitation neuropsychology. Over the past year, Dr. Slomine and Dr. Suskauer completed a project with a neuropsychology postdoctoral fellow studying long-term outcomes for patients who experienced a traumatic brain injury during childhood. While the work—which found that important functional improvements could occur well past the first year after injury—was completed with minimal funding, “It has very important implications for patients and their families,” Dr. Slomine explains.

Dr. Slomine and Dr. Suskauer co-direct the Institute’s Center for Brain Injury Recovery, which helps children and young adults recover from brain injuries. They also conduct brain injury research, with a particular focus on developing new treatments for brain injury and more precise ways to measure subtle, clinically important changes in children’s ability to move after experiencing a severe brain injury.

“We’re finding that for a child to be able to make even small amounts of change in head or trunk control in the weeks following a traumatic brain injury may be predictive of more global recovery,” Dr. Suskauer says. “That helps us guide patients’ families in planning for the future,” adds Dr. Slomine, who also studies how cardiac arrest—when the heart stops—affects the brain, and how applying hypothermia (cooling of the body) to someone who has just experienced cardiac arrest can aid in functional recovery. There’s still much to learn about helping children maximize their functioning after brain injury, she adds. The more funding they receive, the more data they can collect, and the more they can learn about and help kids who’ve experienced a brain injury.

The Sawczuk family.
The Sawczuk family

Ben Sawczuk, 23, was one of those kids. Fifteen years ago, he was hit by a car while riding his bike. He remained nonresponsive for 23 days, then slowly began to regain consciousness. Initially, his only way to communicate was by blinking his eyes—one blink for “yes,” two for “no.”

But those small movements were ultimately followed by a remarkable recovery. After inpatient rehabilitation at Kennedy Krieger, he attended the Institute’s Specialized Transition Program, a neurorehabilitation day hospital, for seven months. He went on to graduate from high school, then college.

“The Sawczuks are an extraordinary family, donating not only funding to our work, but also time,” Dr. Suskauer says. Since 2014, Dave and Joanne, Ben’s dad and mom, have helped organize an annual charity golf tournament, hosted by the National Capital Region Security Forum, to raise funds for brain injury care and research at Kennedy Krieger. And the family has joined Dr. Slomine in a panel presentation for Institute trainees, sharing their experience with brain injury and rehabilitation. “It’s been really invaluable for our leaders in training to hear,” she says.

The family’s reason for giving is simple: “Because they gave so much to us,” Ben says. “Pay it forward is my motto,” Dave adds. “You find the way in which you can pay it forward, and you do it.”

Adds Joanne: “If we can make just one family’s life easier during their hospital stay and transition back home, then we’ve made a difference.”

To learn more about how you can support research on movement and motor disorders at Kennedy Krieger, email Foundation@KennedyKrieger.org and ask to speak with a gift officer from our Office of Philanthropy.