Highlights from the January 24, 2013 Board meeting Research Summary Presentation to new and returning board members were “numerous and enlightening,” according to new Board Chairman Bill Richards, himself a father of a grown son with CP. The presentation covered where the field of CP and CPIRF research has been, where it is now, and outlined the unique opportunities for the 21st century.
Leading the presentation were Dr. Peter Rosenbaum, Chairman of the CPIRF Scientific Advisory Council and Professor of Pediatrics at McMaster University and Dr. James Blackman, CPIRF Medical Director and Professor of Pediatrics Emeritus, University of Virginia.
Expanded Family & Lifespan Focus
In commenting on how the focus in the field has changed to the family, rather than solely the individual with CP, Dr. Rosenbaum commented that a 2-year-old doesn’t say, “I’m worried that I don’t walk well.” The worries are on the part of the parents. Today’s doctors are engaged with the whole person and the entire family to help individuals with CP to have a full, meaningful life. Studies are underway to encompass every aspect, from the caregivers’ physical health to the adults with CP who have chronic pain. “There are three times as many adults with Cerebral Palsy than children, but most of the medical community focuses on kids,” said Rosenbaum. “We are expanding our focus to cover the entire lifespan and all related social and environmental issues.” For example, mental health challenges that can accompany Adult CP are being studied. (See Dr. Blackman’s most recent column in From the Medical Director’s desk, about CP and mental health issues.)
Better Understanding Leads to More Focused Treatment
Dr. Rosenbaum additionally discussed how the words “mild, moderate, severe and normal are awful words that should be expunged, “and how the CP community is moving forward in using a more humane common language numbering system to describing varying CP abilities. Research and better understanding of the different types of CP has also allowed the medical community to stop treating the entire community with a broad brush. For example, better understanding the specific types of CP has allowed us to stop x-raying 60% of children with CP for whom hip dislocation is not a significant risk.
Breaking Ground from Robotics to Gene and Brain Studies
From researching genes to the use of robotics, to helping Middle East children with CP navigate walking on rough terrain, “CPIRF is breaking ground in research studies and resulting treatments around the world,” according to Dr. Blackman.
The speakers reviewed the Kinect project, an optical reader for gaming that assesses motor ability of the gamer with physical disabilities and adapts accordingly. Deep brain stimulation is another area of research that brings great promise. Deep Brain Stimulation (DBS) is a neurosurgical technique whereby electrodes are implanted deep within the brain to control involuntary movements. CPIRF is coordinating an international study of the possible benefits of DBS in certain types of CP with dystonia.
The meeting closed with CPIRF CEO Glenn Tringali noting that there is no other non-governmental organization in the United States solely focused on CP research. “We take our responsibility to the CP community very seriously and look forward to continuing to share and celebrate our progress with families, scientists and the medical community.”