The Sarah Jane Brain Foundation (SJBF) is a non-profit organization based in New York City that was formed in October 2007 by Patrick Donohue. It is named after Donohue's daughter, Sarah Jane, who sustained a severe traumatic brain injury after being shaken by her baby nurse when she was five days old.[1] The overall mission of the SJBF is to further the field of neurology forward fifty years in the next five years.
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The first project of the SJBF was the Sarah Jane Brain Project, which launched simultaneously with the formation of the SJBF.[2] The goal of the Sarah Jane Brain Project was/is to implement an open source format to medical records online for the world’s best doctors to have access to them. The hope is to get more eyeballs on every case. (ex. a scientist in Switzerland at 3 a.m. reviewing EEGs (instead of watching NCAA football) or a physical therapist from Florida watching therapy sessions online and suggesting a different rotation, method or therapy altogether). While discussing Phase 1 of the Sarah Jane Brain Project, it was discussed that an “Open Source Initiative” for all traumatic brain injuries (motor vehicle incidents, falls, sports concussions, child abuse as well as blast injury from war) would be extremely valuable information and lead to advances in research and treatments. Phase 2 of the Sarah Jane Brain project was to recruit other families into the database. To expand on Phase 2, SJBF began developing an Advisory Board of experts to help “standardize the wheel.” After speaking with one of the leading researchers in the field of pediatric traumatic brain injury, the objective was set: To create and implement a seamless, standardized, evidence-based system of care universally accessible for all children and young adults with Pediatric Acquired Brain Injury (PABI), regardless of where they live in the nation. In January 2009, the National Advisory Board of the SJBF drafted a 104-page National Pediatric Acquired Brain Injury Plan which outlined the entire continuum of care for children and young adults up to age 25 with PABI.
Patrick Donohue wrote a letter to his daughter Sarah Jane, the namesake for the Sarah Jane Brain Foundation, on her 5th birthday: Read the Letter
As the #1 leading cause of death and disability in the United States for children, adolescents and young adults, Pediatric Acquired/Traumatic Brain Injury (PA/TBI) is a national disaster. Because a brain injury is typically “invisible,” it remains unrecognized or under-recognized, thereby markedly increasing the burden of care in all aspects of society.
The mission of the Sarah Jane Brain Project is to develop a seamless, standardized, evidence-based system of care universally accessible for all children/young adults and their families dealing with PA/TBI regardless of where they live in the nation. This PA/TBI Model System of care is called the National Pediatric Acquired Brain Injury Plan (PABI Plan). The National Advisory Board of The Sarah Jane Brain Project developed the PABI Plan and this grant proposal is taken directly from the PABI Plan. (To read the entire PABI Plan, please visit www.TheBrainProject.org). The PABI Plan was organized into seven Categories of Care: 1) Prevention, 2) Acute, 3) Mild TBI, 4) Reintegration/long-term care, 5) Adult Transition, 6) Rural/Tele-medicine, 7) The Virtual SJBF Center.. SJBP will facilitate this integration along with ongoing development of effective interventions and supports, and their validation through research guided by theory, existing data across disability populations, and participant needs.
The PABI Plan covers traumatic causes such as those sustained as a result of motor vehicle accidents, sports related injuries, blast injuries from war, assaults/child abuse, gunshot wounds and falls along with non-traumatic causes including but not limited to anoxia, infection, brain tumor, stroke, seizure, inflammation, toxins, meningitis, substance abuse and metabolic disorders. The focus of the SJBP is on children, adolescents and young adults, ranging in age from birth to 25 who have sustained a traumatic or non-traumatic acquired brain injury. Young adults are included due to the fact that their brains are still developing, as indicated by biological measures (brain metabolism, myelination), neurocognitive measures (executive functions, inhibitions) and social measures (beginnings of independence, transition to adult privileges and responsibilities).
The first step in implementing the PABI Plan to fulfill this mission was to create a national structure providing complete national coverage and the ability to standardize the system of care while still providing the flexibility for each state to have its own pathway to universal accessibility. In order to ascertain and carry out this integrated seamless system of care, a network of 52 Sarah Jane Brain Family (SJBF) State Lead Centers of Excellence have been created (one in every state plus the District of Columbia and Puerto Rico)
Each State Lead center will have three main responsibilities: 1) developing and implementing a Statewide Master Plan creating a seamless, standardized, evidence-based system of care, universally accessible for all PABI families within their state; 2) providing a specialized case management system for these PABI families within their state; and 3) providing a Regional leadership role around one of the seven Categories of Care within the PABI Plan. The country was divided into seven regions of seven or eight states/territories in each region (Northeast, Mid-Atlantic, Southeast, Mid-Central, South-Central, Rocky Mountain and Pacific Regions).
We announced the PABI Plan within the first letter ever sent to President Barack Obama at 12:01 p.m. on his Inauguration Day, January 20, 2009. Read the letter here
The Sarah Jane Brain Foundation kicked off the “2011 National Pediatric Brain Injury Plan Tour” in January with a presentation about the PABI plan at Eastern Carolina University. This was the first of a long list of stops that spanned over 40 states. The tour sponsored by Easton-Bell Sports, focused on two types of presentations. The first was a presentation for high school students which focused on sports concussions. The second type of presentation focused around the PABI Plan and was intended for people in the medical profession.
Highlights of the tour included: a fundraiser with Congressman Pete Sessions and Dallas Mayor Tom Leppert, tailgating the Superbowl in the tours 40-ft “Angels on the Bay Express” RV, the APTA Conference with Congressman Adrian Smith, presentation at William Penn High School (PA) with Congressman Todd Platts, presentation at Wheeling Park High School (WV) with Congressman David McKinley, 5th Annual Shaken Baby Syndrome Candlelight Vigil (FL), information table at Mississippi State vs. Ole Miss NCAA Baseball game, RV parked on berm during New Orleans Zephyrs @ Albuquerque Isotopes AAA game, and the National Summit on Sports Concussions in Los Angeles.
HR 2600 was introduced by Congressman Leonard Lance (R-NJ)on July 20th, 2011. The legislation seeks to develop a national model system of care and treatment for all children suffering from pediatric acquired brain injuries.
The PABI Plan Act if passed by Congress would create “PABI centers of excellence” in every state in every state as well as Washington D.C. and Puerto Rico. These centers will facilitate, care work to improve rehabilitative services in the community and use research to better understand the effects of the neurological insults on the developing brain.
The legislation will cover the entire continuum of care from prevention, treatment in acute medical facilities, reintegration back into the schools, communities, and homes and then transitioning into an adult system of greater independent living.
HR 2600 currently has received bi-partisan support and currently has over 100 cosponsors. You can view the list of cosponsors as well as read HR 2600 in its entirety: here.
The second initiative of the SJBF was the Zackery Lystedt Brain Project, which was officially launched during Super Bowl week 2010 in Miami, Florida. The goal of the Zackery Lystedt Brain Project is to reduce the impact of youth sports concussions in all 50 states across America,[3][4],.[5]