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New York, NY – The Sarah Jane Brain Foundation, a non-profit organization whose mission is to assist in the research of new developments for children suffering from pediatric acquired brain injury (PABI) and the rehabilitation of these children, today announced over 35 children and their families have agreed to participate in the first Open Source Medical Database in the world. Sarah Jane Donohue and The Sarah Jane Brain Foundation were featured on The TODAY Show last Friday, November 14, 2008 (you can view the segment at www.TheBrainProject.org).
Patrick Donohue stated, “The response to The TODAY Show has been truly amazing! We have received hundreds of emails, postings and donations from all over the world. Parents understand the need to join forces for their children and the medical community is greatly appreciative of this collaborative process.” Patrick Donohue is the Founder of The Sarah Jane Brain Foundation and father of Sarah Jane Donohue.
Dr. Keith Yeates said, “The Sarah Jane Brain Foundation’s Open Source Initiative will transform and revolutionize the field of pediatric acquired brain injury.” Dr. Yeates is the Director of the Division of Psychology and Department of Pediatrics at Ohio State University and the Chief of the Department of Psychology at Nationwide Children’s Hospital in Columbus, Ohio. Dr. Yeates serves on The National Advisory Board of The Sarah Jane Brain Foundation.
Dr. Christopher Giza said, “Researchers from all over the world will be drawn to The Sarah Jane Brain Foundation’s Open Source Initiative which will undoubtedly lead to future discoveries and breakthroughs.” Dr. Giza is the Associate Professor of Pediatric Neurology and Neurosurgery at the UCLA Brain Injury Research Center and Mattel Children’s Hospital. Dr. Giza serves on The National Advisory Board of The Sarah Jane Brain Foundation.
Dr. Gillian Hotz said, “This project will encourage more hope, more answers and more resources for children and their families who are suffering from the leading cause of death and disability for children.” Dr. Hotz is the Associate Research Professor at the Division of Trauma and Surgical Critical Care at the University of Miami’s Miller School of Medicine and Dewitt Daughtry Family Department of Surgery. Dr. Hotz serves on The National Advisory Board of The Sarah Jane Brain Foundation.
CHILDREN WHO ARE PARTICIPATING IN THE OPEN SOURCE INITIATIVE
- Christopher Daughtrey, 2-year-old from North Carolina, shaken at 7 weeks old
- Chelsea Forant, 7-year-old from Massachusetts, shaken at 3 months old
- John Romano, 17-year-old from New York, hit by car at 9 years old
- Matthew Beaulieu, 3-year-old from Maine, shaken at 6 months old
- Carson Alley, 2-year-old from Kansas, run over by car at 20 months old
- Alexis Verzal, 21-month-old from Nebraska, shaken at 14 months old
- Natalie Schmitt, 7-year-old from Illinois, brain atrophy leading to seizures and stroke
- Stephen Huffman, 5 years old, shaken at 2 months old *
- Carlos Michaud, 3-year-old from Maine, shaken at 6 weeks old
- Tracy Ilacqua, 31-year-old from New York, MVA at 16 years old
- Evelynn Biondo, 18-month-old from New York, shaken at 10 weeks old
- Casey Barnes, 2 years old, prenatal uterine rupture causing lack of oxygen *
- Shaun Best, 34-year-old from Arkansas, sustained numerous PTBIs as a child (MVA and sports)
- Matthew Melton, 5-year-old from Tennessee, AHT at 1 month old
- Kyle Mitchell, 9-year-old from Washington, shaken at 6 months old
- Ryan Sanders, 15-year-old from Virginia, shaken at 8 weeks old
- Denny Thompson, 5 years old, shaken at 3 months old
- Trenton Pope, (deceased), smothered at 3 months old and died one year later
- Monica McClure, 8 years old, AHT *
- Gavin Evancho, 3 year old from Virginia, shaken at 5 days old
- “John Doe” 10-month-old from Illinois, lack of oxygen at birth
- Nick S., survivor of SBS **
- 6 PTBI survivors from Washington (adopted sons of Nancy Perron)
- Shane Salgado, SBS survivor
- “John Doe,” child with B12 deficiency causing brain damage
- Belle Pallett, 9 years old, blood clot on brain from vacuum extraction at birth
- 3 PTBI survivors from New York (adopted children of Victoria Monoco)
- “Jane Doe,” 11 years old, survivor of brain tumor at 6 months old
- “John Doe,” 17 year old SBS survivor
- “Jane Doe,” 9-year-old from Georgia, prenatal stroke
- “John Doe,” 4 years old, Fetal Alcohol Syndrome
Pediatric Traumatic Brain Injury (PTBI) is the leading cause of death and disability for children under 15 years of age in the United States resulting in over 5,000 deaths and over 17,000 permanent disabilities each year. PTBI includes all brain injuries caused by trauma including falls, motor vehicle (MV) accidents, being struck by an object, violence/assault, sports incidents, gunshot wounds and non-MV bicycle accidents. In addition, since the adult brains aren’t considered developed until age 24 or 25, many of the military veterans returning from Iraq and Afghanistan with TBI are actually considered PTBI. PABI includes all traumatic causes plus brain injuries caused by brain tumors, strokes, meningitis, insufficient oxygen, poisoning, ischemia as well as substance abuse.
The Open Source Initiative uses open source principles for the first time in medical history to assist in the study and rehabilitation of children suffering from PABI. In other words, we are making available the complete medical and therapy records and information for each one of the children participating to doctors, researchers, other parents and caregivers, therapists, students and the general public. By sharing all of this information and not putting any restrictions on its use, we are creating a portal of information for everyone involved in the field of neuroscience and neurorehabilitation. This will be a secure and anonymous location where parents can share medical and therapy data while researchers, doctors and other professionals can review the data, share thoughts, explore theories and report findings in an open forum. In order to maximize the potential development of our children, we are using the same open source principles adopted by GNU.