The Sarah Jane Brain Foundation
The Mission of The Sarah Jane Brain Project is to create and implement a national model system for children suffering from all Pediatric Acquired Brain Injuries. The PABI Plan has been endorsed by 50 U.S. Congressmen. The Plan includes a $930 million grant proposal supported by the American Academy of Pediatrics. The plan includes the establishment of 52 State Lead Centers on pediatric brain injury.
The 52 “State Lead Centers” – one in every state plus the District of Columbia and Puerto Rico – will work together and with other institutions in their states to address the number one cause of death and disability for children and young adults in the United States: brain injury.
These institutions consist of many top-rated children’s hospitals, research universities and health advocacy organizations staffed by the best pediatric neurologists and rehabilitation experts in the country.
In January, over 60 of the top medical professionals in the field came together in New York City and drafted the first-ever National Pediatric Acquired Brain Injury (PABI) Plan, which called for the development of a national system of collaboration to address the issue.
The Sarah Jane Brain Project (SJBP) held an open application period in March and invited institutions to apply to be the State Lead Centers in their respective states to implement the National PABI Plan.
A selection committee of seven well-known brain scientists and rehabilitation experts across the nation reviewed the applications and selected one institution in every state, plus one each in the District of Columbia and Puerto Rico, as the institution most capable of being the State Lead Center for their state.
Pediatric Traumatic Brain Injury (PTBI) is the leading cause of death and disability for children and young adults from birth through 25 years of age in the United States. Over 5,000 deaths occur annually due to PTBI, over 17,000 annually suffer from permanent disability due to PTBI, and over 1,000,000 are hospitalized each year due to PTBI. In addition, since most brains aren't fully developed until age 25, many of the Military Veterans returning from Iraq and Afghanistan with TBI are actually considered PTBI. Pediatric Acquired Brain Injuries (PABI) include all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse.
The father of a child suffering from PTBI, like MayRose's mother, spent countless hours searching the internet and speaking with his daughter's developmental team (doctors, therapists and other professionals) trying to improve the development of his daughter, Sarah Jane.
Whereas there are countless number of wonderful and informative prevention sites for Traumatic Brain Injury and Pediatric Acquired Brain Injuries, there isn't a central resource for research, rehabilitation and development for PTBI. Many of the issues families and children face are the same whether the brain injury was caused by a car accident, oxygen deprivation, an assault or by a tumor.
In addition, it has become clear that no one person or organization has all the answers to the questions we face as parents with children suffering from PABI. After speaking with Sarah Jane's Development Team, the coordination and dissemination of Sarah Jane's medical and therapy records and data in an orderly manner helps them to help her. Her Developmental team is constantly looking for additional ways to improve Sarah Jane's progress by speaking with colleagues, reading literature, and collaborating with other parents. But they all admit there is a considerable amount that still needs to be learned about the human brain.
Using the computer industry as an example, the field of neuroscience is like the computer industry was in the 1970s: you had a diverse group of vary smart people working independent of one another throughout the United States and World without knowing what the others are working on and making significant strides behind close doors. Fast-forward 30 years, and many of the breakthroughs in the computer industry are utilizing the principle of open source. Open source is a set of principles and practices that promote free and open access to the design and production of goods and knowledge. Its well known use is through the creation of the Linux computer operating system on which professionals make corrections and fix problems.
The National Institute of Mental Health launched The Human Brain Project in 1993 to develop and support the new science of neuroinformatics. From this initiative, it is obvious that a similar measure needs to be taken for PABI. That is why the Sarah Jane Brain Project was created. To establish a data portal for professionals and families dealing with PABI around the world.
The 52 “State Lead Centers” – one in every state plus the District of Columbia and Puerto Rico – will work together and with other institutions in their states to address the number one cause of death and disability for children and young adults in the United States: brain injury.
These institutions consist of many top-rated children’s hospitals, research universities and health advocacy organizations staffed by the best pediatric neurologists and rehabilitation experts in the country.
In January, over 60 of the top medical professionals in the field came together in New York City and drafted the first-ever National Pediatric Acquired Brain Injury (PABI) Plan, which called for the development of a national system of collaboration to address the issue.
The Sarah Jane Brain Project (SJBP) held an open application period in March and invited institutions to apply to be the State Lead Centers in their respective states to implement the National PABI Plan.
A selection committee of seven well-known brain scientists and rehabilitation experts across the nation reviewed the applications and selected one institution in every state, plus one each in the District of Columbia and Puerto Rico, as the institution most capable of being the State Lead Center for their state.
Pediatric Traumatic Brain Injury (PTBI) is the leading cause of death and disability for children and young adults from birth through 25 years of age in the United States. Over 5,000 deaths occur annually due to PTBI, over 17,000 annually suffer from permanent disability due to PTBI, and over 1,000,000 are hospitalized each year due to PTBI. In addition, since most brains aren't fully developed until age 25, many of the Military Veterans returning from Iraq and Afghanistan with TBI are actually considered PTBI. Pediatric Acquired Brain Injuries (PABI) include all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia and substance abuse.
The father of a child suffering from PTBI, like MayRose's mother, spent countless hours searching the internet and speaking with his daughter's developmental team (doctors, therapists and other professionals) trying to improve the development of his daughter, Sarah Jane.
Whereas there are countless number of wonderful and informative prevention sites for Traumatic Brain Injury and Pediatric Acquired Brain Injuries, there isn't a central resource for research, rehabilitation and development for PTBI. Many of the issues families and children face are the same whether the brain injury was caused by a car accident, oxygen deprivation, an assault or by a tumor.
In addition, it has become clear that no one person or organization has all the answers to the questions we face as parents with children suffering from PABI. After speaking with Sarah Jane's Development Team, the coordination and dissemination of Sarah Jane's medical and therapy records and data in an orderly manner helps them to help her. Her Developmental team is constantly looking for additional ways to improve Sarah Jane's progress by speaking with colleagues, reading literature, and collaborating with other parents. But they all admit there is a considerable amount that still needs to be learned about the human brain.
Using the computer industry as an example, the field of neuroscience is like the computer industry was in the 1970s: you had a diverse group of vary smart people working independent of one another throughout the United States and World without knowing what the others are working on and making significant strides behind close doors. Fast-forward 30 years, and many of the breakthroughs in the computer industry are utilizing the principle of open source. Open source is a set of principles and practices that promote free and open access to the design and production of goods and knowledge. Its well known use is through the creation of the Linux computer operating system on which professionals make corrections and fix problems.
The National Institute of Mental Health launched The Human Brain Project in 1993 to develop and support the new science of neuroinformatics. From this initiative, it is obvious that a similar measure needs to be taken for PABI. That is why the Sarah Jane Brain Project was created. To establish a data portal for professionals and families dealing with PABI around the world.
