It’s the ‘thing in my life that shaped me the most,’ participant says of life-changing therapy
After experiencing a stroke in utero that caused weakness on the left side of her body, Keya Shapiro found a home at the Fralin Biomedical Research Institute’s Neuromotor Research Clinic, which is celebrating 10 years of research into the therapy.
Keya Shapiro experienced a stroke in utero that caused weakness on the left side of her body.
She was 13 months old when she first met Stephanie DeLuca and Karen Echols. At the time, DeLuca directed a research clinic at the University of Alabama at Birmingham where in collaboration with Echols and Sharon Ramey, the team would develop a unique form of high-intensity pediatric rehabilitation for children and young adults with cerebral palsy and other neuromotor movement disorders called ACQUIRE therapy.
In 2013, DeLuca and Ramey established the Neuromotor Research Clinic at the Fralin Biomedical Research Institute at VTC, where Keya would continue yearly ACQUIRE therapy.
Since then, the clinic has served more than 200 children and trained more than 50 therapists in ACQUIRE therapy. Now 18 years old, Shapiro reflected on her journey.
“It's probably the most important thing in my life that shaped me the most,” said Shapiro. “People ask me if I wish I would have never had a stroke, and there are times where I think, ‘Well of course.’ But overall, it's made me a stronger person.”
The Fralin Biomedical Research Institute’s Neuromotor Research Clinic recently published findings in Behavioral Sciences demonstrating improved motor function for a wide range of diagnoses — including cerebral palsy, stroke, traumatic brain injury, arteriovenous malformation, hemispherectomy, and more — after receiving the intensive pediatric neurorehabilitation.
Mary Rebekah Trucks, associate director and senior occupational therapist at the Neuromotor Research Clinic, has worked with Shapiro since the beginning.
“Watching her evolve over the last 17 plus years — from play-based activities focused on strengthening her left arm to complex activities now as a teenager that require the use of both hands together, such as tennis and photography — it’s simply incredible,” Trucks said. “To know that we had a part in that through AQCUIRE and intensive therapy that is evidence-based, doing the research while also offering it in a clinical-setting, is a huge gift.”
After completing her last session with the clinic, Shapiro committed a portion of her freelance photography earnings to help sponsor other participants in ACQUIRE.
Though the physical improvements have been life-changing, character development is the component Shapiro values most.
“You can't just come here, do the therapy, and be done. You have to commit to it. It’s hard in the moment, but it definitely pays off in the long run,” Shapiro said. “My time in ACQUIRE contributed to both my work ethic and my goals for the future. Without it, I’m not sure I would have such a strong interest in pursuing medicine.”
Shapiro is now part of a competitive University of Minnesota program that identifies and recruits high potential premedical students into a Bachelor of Arts/Medical Doctor Joint Admissions Scholars program. She plans to explore a career in neurology or pediatric medicine.
“I am thankful that I'm able to do all the things I want to do, and I don't think it would have been possible without the people here at the Neuromotor Research Clinic,” she said.
According DeLuca, associate professor at the Fralin Biomedical Research Institute and co-director of the Neuromotor Research Clinic, there is still plenty of work to do. The clinic continues its research into developing specific frameworks for guiding and training therapists to help children learn.
“The ACQUIRE framework we published earlier this year demonstrates that there is a complex decision-making process that therapists must be constantly going through in order to keep a child engaged in the learning process,” DeLuca said. “Most therapy frameworks focus on the patient and their responses, but therapy is impacted by the attention, awareness, perception, and understanding of both the patient and the therapist, we need to understand this to maximize the therapeutic process.”
As the clinic reflects on the first 10 years, Ramey, professor at the Fralin Biomedical Research Institute, is motivated for the future.
“Our first decade has been a scientific dream come true,” said Ramey, the clinic’s founding co-director. “We have a dedicated, talented group of scientists, therapists, and students who work tirelessly to improve our understanding of what types of therapy work best for individual children. We look forward to an even brighter second decade when we expand and connect with others to maximize our impact."
In this report
- Stephanie DeLuca, associate professor, Fralin Biomedical Research Institute at VTC; co-director, Neuromotor Research Clinic; associate professor, School of Neuroscience, College of Science
- Sharon Ramey, research professor and distinguished research scholar, Fralin Biomedical Research Institute at VTC; research professor, psychology, College of Science; founding co-director, Fralin Biomedical Research Institute at VTC Neuromotor Research Clinic
- Mary Rebekah Trucks, senior occupational therapist, associate director, Neuromotor Research Clinic