BRIGHT is a newly forming 501(3)c non-profit. We are primarily a parent’s group with the strong involvement of clinical and research professionals. We serve the population of infants and children that suffered an acquired brain injury early in life. We are concerned with the developmental process, both motor and cognition. We have a quickly growing membership of parents and professionals (currently about 400) that primarily benefit from our Facebook group, Brain Injury Support Forum where we feature current research reviews, therapy effectiveness reviews, advocacy information, and share practical advice.
While these website services serve to enlarge our membership and provide much needed resources to the community, they are not our primary focus. Our primary focus is the engagement of the professional community to accelerate the translation of cutting edge research into clinical applications, to promote focused research in limited high impact areas, and to generate excitement among media and public and private funding sources.
Our research agenda is guided by a growing world class Scientific Advisory Board, consisting of experts from multi-disciplinary backgrounds including basic medicine, rehabilitation, neurology, bio-mechanics, robotics, kinematics, etc. Our goal is to help the professional community achieve significant improvements in clinical outcomes with-in three to five years through a focused research agenda. Given this aggressive timetable we will focus on promoting the enhancement of existing rehabilitation methodologies to optimize plasticity, rather than venture into more uncertain territory such as stem cells.
With the help of our Scientific Board, we have conducted an extensive evaluation of the current state of knowledge in the field of childhood rehabilitation after brain injury (BI). We have found ample evidence that plasticity can play a powerful role in dramatically improving outcomes. We have found splintered research that suggests effective treatment modalities. However, in general we have come to the conclusion that the field is still in its infantile stage. Because of this, we hold great hope for the future. We believe that what is needed today is a focused, grassroots movement to help provide the professional community with the vision, funding, motivation and urgency to achieve results in the three to five year timeframe.
We take mentorship from organizations such as the Christopher Reeves Foundation, Project ALS and Cure Autism Now. All of these organizations have been extremely effective in promoting and advancing the state of knowledge in their respective fields. We do not believe that any existing groups represent the Childhood BI community in a similar manner and this is the gap that BRIGHT intends to fill.
Our current focus includes the electronic cataloging of empirically proven facts concerning BI rehabilitation, review of the theoretical and empirical basis for current treatment modalities including mainstream as well as alternative approaches, the creation of a on-line database of children with BI including their birth and medical history, their treatment history and their developmental history, and finally we plan to host our first meeting of the scientific board to refine the most promising areas of research in April of 2003 with a much larger event, possibly with NIH funding, in September 2003.
With many of the founders having strong backgrounds in business, engineering and other practical problem solving areas we believe in a disciplined and focused approach to achieve our goal. We start with a definition of the objective, define the problem boundaries, establish a measurement system, define success with-in that measurement system, collect data, analyze the data, implement possible solution strategies, measure again, improve again or put in place controls to maintain the improvement.
With this mind, one of our top priorities is a call for the community to come together to develop more effective measurements and measurement systems. This area alone represents a huge opportunity and demands adequate leadership, focus and funding immediately.
As a final note, although we recognize the obvious need for funding to solve any problem, our knowledge and experience has shown us time and time again that problems are never solved with money alone. Problems are solved with a clear vision, a motivated team and the ability to step outside the boundaries of current practice. It is these conditions that BRIGHT seeks to create. We are confident that our children have a very BRIGHT future.