A Delaware family has donated $1 million to the Nemours Alfred I. DuPont Hospital for Children, a pioneering research center in the field of cerebral palsy and other neuromuscular disorders that affect children.
Gift Will Promote Pioneering CP Research In Delaware
On February 8, 2017, Michael and Ericka Hynansky announced a new fund that will help doctors at Nemours improve our fundamental understanding of cerebral palsy disorders and allow for the development of innovative treatment methods. The Nicholas T. Bracaglia Cerebral Palsy Research Endowed Fund was named in honor of Michael Hynansky’s cousin, Nicholas, who died at the age of 14 from cerebral palsy complications.
The generous gift “will help advance CP rehabilitative and research efforts to give a voice to those without a voice and improve the lives of patients and their families,” Hynansky told DelawareOnline. More than 3,000 children with cerebral palsy disorders receive care at Nemours’ Wilmington-based Cerebral Palsy Center every year, working with doctors like Roy Proujansky, who was Nicholas Bracaglia’s pediatric gastroenterologist. “Nicholas was a very special child, Dr. Proujansky said in an interview with DelawareOnline, “and now, this endowed fund in his name will help countless other children. His spirit lives on.”
Basic Research & New Technologies
Established by industrialist Alfred duPont in 1936, the Nemours Foundation is a non-profit with the express goal of improving the health and well-being of children. Operating hospitals and health clinics in Delaware, Florida, Pennsylvania and New Jersey, Nemours has taken cerebral palsy disorders as a particular focus, funding and conducting basic research on neuromuscular syndromes that begin during childhood.
The Foundation’s work on cerebral palsy is based at the Alfred I. DuPont Hospital for Children in Wilmington, Delaware. Researchers at Nemours are currently involved in over 30 studies with the potential to offer children with cerebral palsy disorders ground-breaking improvements in mobility, stability and independence. Today, scientists working out of the Foundation’s Delaware Cerebral Palsy Center are developing advanced orthotics and prosthetics and learning more about the complex link between maternal infections and cerebral palsy.
At the Nemours Center for Pediatric Clinical Research and Development, doctors in the Tissue Engineering and Regenerative Medicine Lab are pioneering research on the neuromuscular junction, where nerves meet muscles and movement is initiated. While past research has found that many adult neurological injuries, including stroke and spinal cord injuries, lead to abnormal neuromuscular junctions, few investigators have improved our understanding of the neuromuscular junctions in children with cerebral palsy.
Improving The Baclofen Pump
Many children with spastic forms of cerebral palsy take baclofen, a medication that can help reduce spastic muscle activity and loosen stiff muscles. While the drug is usually administered as an oral tablet, oral administration lowers the dosage of baclofen that becomes active, since the drug must travel first through the digestive system before reaching a patient’s spinal fluid. To compensate, doctors must increase the drug’s dosage, which can lead to undesirable side effects, especially in children.
Implanted devices known as intrathecal baclofen pumps (IBC), on the other hand, can deliver the drug directly to a child’s spinal fluid. This method of administration requires lower dosages, and is thus associated with fewer side effects, than oral administration. Complications, however, are fairly common after an IBC has been implanted, so doctors at Nemours are working on ways to improve the therapy further.
Improving Gait Analysis
In the hospital’s Gait Analysis Laboratory, researchers study how neuromuscular disorders can affect the way children walk by using cutting-edge digital technology. With the Laboratory’s resources, doctors and research clinicians are able to evaluate a child’s muscle activity and joint movement, while measuring how the process of walking places pressure on the limbs.
Children with cerebral palsy often experience a number of muscle, joint and bone problems, all of which can affect their walking pattern, or gait. In turn, a child’s gait can lead to further problems, as their bones and muscles develop to compensate for an abnormal walking pattern. Over time, gait issues can result in chronic pain, fatigue and weakness, or impairments in walking ability. Gait analysis helps physicians develop a comprehensive understanding of how a child’s gait has been affected by cerebral palsy and may suggest tailored treatment strategies.
Surgery, bracing and medications are the primary treatment options for gait deviations among children with cerebral palsy disorders, Children’s Hospital of Philadelphia reports.