Odd name, huh? The Sara Jane Brain Project. But what is odd in name is absolutely breathtaking in what the project is trying to accomplish as it works to create a model system for children suffering from all types of Pediatric Acquired Brain Injuries.
"A model system of what"?, you might ask. Well, that is best explained by the website www.thebrainproject.org
Thank you for visiting The Sarah Jane Brain Project. As you may know, Sarah Jane Donohue is my three-year old daughter who was shaken by her baby nurse when she was only five days old and suffers from Pediatric Traumatic Brain Injury – PTBI (Click on the angel to read her story). 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.
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 Mission of The Sarah Jane Brain Project is to create a model system for children suffering from all Pediatric Acquired Brain Injuries.
We have four Phases of The Sarah Jane Brain Project. Phase 1 uses open source principles for the first time in medical history making all of Sarah Jane’s medical records available online without any restrictions. Phase 2 will bring in more families into our open source initiative and develop The National Advisory Board of The Sarah Jane Brain Foundation. Phase 3 will create a Pediatric Acquired Brain Injury Plan designed to outline the model system for children suffering from PABI. Phase 4 will be implementing the PABI Plan and the model system.
Thank you in advance for being part of The Sarah Jane Brain Project and please share this site with others you think would be interested.
Patrick B. Donohue, Esq.
Father of Sarah Jane Donohue
The vision of Mr. Donohue is stunning and the help and assistance that this project will provide to medical care practitioners across the country is immeasurable. Mr. Donohue is working arm and arm with the project’s National Advisory Board that as of right now, is comprised of some of the top brain injury medical practitioners, therapists, counselors and attorneys in addition to a number of family members who have directly dealt with this serious injury to their own child.
Why did Mr. Donohue start this project? It’s best to let him explain it in his own words:
Why did I create The Sarah Jane Brain Project?
As a father of a child suffering from Pediatric Traumatic Brain Injury (PTBI), I have spent countless hours searching the internet and speaking with her Development Team (doctors, therapists and other professionals) trying to improve the development of my daughter, Sarah Jane.
Whereas, there are a countless number of wonderful and informative prevention sites for Shaken Baby Syndrome and advocacy sites for Traumatic Brain Injury and other Pediatric Acquired Brain Injuries (PABI), there isn’t a central resource for research, rehabilitation and development for PABI. Many of the issues families and children face are the same whether the brain injury was caused by a car accident, an assault or by a tumor.
In addition, it has become clear 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 only helps them to help her. Her Development 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 considerable amount still needed to be learned about the human brain.
Using the computer industry as an example, the field of neuroscience is like the computer industry in the 1970s: you have a diverse group of very smart people working independent of one another throughout the United States and world without knowing what the others are working on making significant strides behind closed-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 which professionals make corrections and fix problems or commonly used with the Wikipedia online free encyclopedia that is free and allows for any user to make additions or corrections.
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 what needed to be done. That’s why we created the Sarah Jane Brain Project – which is a data portal for professionals and families dealing with PABI around the world and a vehicle to create the PABI Plan establishing a model system for PABI.
Smith and Johnson is excited to be working with it’s contacts in the Michigan medical community to set up and structure this model plan here in Michigan. This will help ease the initial burden that so many families suffer from when a child suffers a PABI.
Smith and Johnson is not only excited about this new partnership with the Sara Jane Brain Project, but also with the ability that we now have to bring this information right to our readers here at InjuryBoard as soon as it’s released by the project. Stay tuned!