First Scientific Advisory Board Planning Session

Matt Palaszynski & Dr. Story Landis, Director of the National Institute of Neurological Disorders

Dr. Story Landis, Director of the National Institute of Neurological Disorders and Stroke (NINDS) and Matt Palaszynski, BRIGHT founder, at the American Academy of Neurology

BRIGHT Gains Momentum at First Scientific Advisory Board Meeting

It started off swiftly as the parents and scientists of BRIGHT (Brain Injury Group Hope through Treatment) joined each other for BRIGHT’s first official meeting of its Scientific Advisory Board (SAB). Some convened directly with founder Matt Palaszynski in San Francisco, CA at the site of the American Academy of Neurology/Society Of Neuroscience Meeting, others joined from around the globe via teleconference.

The goals for the meeting were lofty, to discuss ways to harness the power of science to improve the lives of children with neurological disabilities. It was a Sunday morning and the high levels of participation were testament to the excitement and enthusiasm the SAB has for BRIGHT’s mission to help children with neurological disabilities.

Members agreed that BRIGHT could help accelerate discovery and speed the translation of research into effective treatments by fostering collaboration among investigators. It became clear that by providing clarity of vision and purpose, that BRIGHT could help build momentum for progress. Scientists also pointed out this is a unique time in history, as advances in neuroimaging have shown that the brain is capable of plastically changing, using healthy areas to compensate for damage. This is a major scientific paradigm shift from the belief held only a few years ago and clearly points to plasticity as a likely mechanism for recovery.

Describing his own reasons for working with BRIGHT, Michael Johnston, MD, Senior Vice President and Chief Medical Officer at Kennedy Krieger Institute, Director of KKI’s Division of Neurology & Developmental Medicine & KKI’s Neuroscience Laboratory expressed the commitment shared by all BRIGHT advisers, “I’m committed to BRIGHT because we share a common vision to use science to impact the lives of children.”

A benefit of the new organization, said Johnathon Mink, MD, PhD, Chief of Child Neurology at University of Rochester is “This multidisciplinary approach provides an exciting opportunity for progress that will have lasting impact on the lives of children with brain injuries “

During the discussion, SAB participants discussed the current state of science for treatment and the different approaches that BRIGHT could take to improve substantially the function and quality of life for the approximately 15 million children who have sustained brain injuries early in life.

To help people understand what BRIGHT is about and attract interest from potential investigators and collaborators the SAB crafted a Vision, Mission and Scientific Prospectus.

Mission and Population Served: Our mission is to facilitate the organization and prioritization of resources around the goal of development and implementation of effective treatments for acquired brain injuries suffered in the fetal, neo-natal and the early childhood period. (I.e. primarily the Cerebral Palsy population)

Vision: Our vision is that our children will move and communicate successfully, allowing them their entitlement of a rich and full life.

Objectives: Our objectives are focused on the implementation of effective treatment strategies with-in the next 5-10 years

Theme: Translating basic knowledge of brain plasticity into solutions for children with early brain injury.

Scientific Prospectus: BRIGHT strives to develop interventions to improve substantially the function and quality of life for children who have sustained brain injuries early in life. We believe that solutions for these children can be developed through systems of intervention that activate multiple sensory and motor centers in the brain when tailored to the child’s stage of development. We seek systems that can demonstrate tangible results over the next three to five years. Individual components of these multi-modal systems may already have been developed but have not yet been integrated for the purpose of helping children with brain injuries using a systems analysis approach. A major theme of BRIGHT’s work is to develop approaches that harness the power of the developing brain’s intrinsic potential for adaptive neuronal plasticity and reduce plasticity that is maladaptive.

Adding to the dialogue Dr. Edward Taub, PhD, University Professor, Department of Psychology at University of Alabama at Birmingham suggested the area found to be most effective to date has been carefully managed motor therapy that combined intensive repetitive training with “behaviorally relevant” movement. Dr. Taub’s pioneering work with Pediatric CI therapy in this area has shown that this approach does produce improved function through plastic brain reorganization.”

Lucy Miller, PhD, OTR and Associate Professor of Rehabilitation Medicine and Pediatrics at the University of Colorado and a leading expert in Sensory Integration Dysfunction, explained how it will be important to also address the sensory issues of these children using a combined systems approach with the motor therapies.

Terry Sanger, MD, PhD and Assistant Professor Department of Child Neology and Neuroscience at Stanford Medical Center talked about the scope of the challenge the team faced. He likened it to running a modern day Thomas Edison laboratory. “Everyone remembers Edison’s successes, for every success he had 1,000 failures.” Terry encouraged the team to never be afraid to safely explore new ideas and sees the high costs of big science to be one of the current impediments to innovation. He hopes that BRIGHT can help motivate private donors to understand that progress comes from learning from one’s past failures and to help fund 1,000 small but potentially history changing projects in the next 5 years.

Dwight Meglan, PhD and father of a 5 year old brain injured girl, enthusiastically agreed to donate his experience as an engineer trained in analyzing, modeling, simulating, and facilitating human biomechanics. “I would love to lead the technical effort to begin the construction of a sophisticated multi-modal system that combine simple and complex stimulation of touch, temperature, proprioception, hearing, sight, with methods that activate simple and complex motor, behavioral and emotional responses. Examples of these methods might include virtual reality environments, flight and other simulator technologies, robotic technology, trans-cranial magnetic stimulation, artificial intelligence, neural electronic prosthesis technology, and interactive video-based touch screen technology that stimulates use of upper-extremities.” Although these technologies sound like science fiction, Dwight assured the team that the technology is no longer the limiting factor and that with the guidance of the scientists and adequate funding this tool can be a reality.

Johnston also reminded the group to keep an open mind about more aggressive approaches such as administration of medications, neuronal growth factors and implantation of stem cells.

DREAM   DISCOVER   TRANSLATE     ENRICH

The team agreed that these four words would help define how BRIGHT moves forward strategically. They agreed that the potential for BRIGHT to enrich the lives of millions of affected children, was only limited by its financial resources.

They agreed that the first step was to encourage the freedom to DREAM, for the parents to dream of the potential of their children to live full and rich lives, and for the scientists to dream of innovations. From our dreams will come scientific DISCOVERY. From discoveries in the laboratory we will TRANSLATE them into practical treatments. From treatment we will ENRICH the lives of the children.

The meeting drew to a close on an enthusiastic note, inspiring plans for future meetings, projects, and achievements.