The following article was written by Patrick Donohue, the Founder of the Sarah Jane Brain Foundation, an advocacy organization dedicated to developing a seamless, standardized, evidence-based system of care for the number one leading cause of death and disability in America’s youth: brain injury.  He is also the father of the Foundation’s namesake, Sarah Jane Donohue.

As the father of a six year-old little girl who was violently shaken by her baby nurse when she was only five days old, breaking four ribs, both collarbones and worst of all causing a severe brain injury, our family became part of a larger family that no one chooses to join. You may recall Sarah Jane’s story on the front pages of the New York Daily News, New York Post and many other papers as well as when we told what happened to Sarah Jane on the TODAY Show back in August 2005. Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;}

Pediatric Acquired Brain Injury (PABI) is the number one leading cause of death and disability in the United States, with more than 765,000 American youth entering a hospital every year with a new injury, resulting in over 80,000 hospitalizations and 11,000 deaths annually. Even more staggering, a recent report from the Centers for Disease Control and Prevention estimates that these numbers may be underreported, as it suggest millions of youth athletes suffer from sports-related brain injuries each year, often referred to as concussions.

I launched The Sarah Jane Brain Foundation in October 2007 to change the world for Sarah Jane and the millions of American youth suffering from brain injuries.  Sarah Jane made her second appearance on The TODAY Show after we launched the foundation and it has quickly grown into one of the largest organizations in the world devoted to pediatric acquired brain injury (PABI). Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;}

Pediatric acquired brain injury includes not only traumatic causes such as motor vehicle accidents, sports injuries, assaults, child abuse and falls, but also non-traumatic causes such as strokes, brain tumors, pediatric AIDS, meningitis and infection. In addition, since pediatric acquired brain injury covers from birth to age 25, most of our soldiers returning from conflicts in Iraq and Afghanistan with a life-altering traumatic brain injury still have a developing brain. Surely we owe it to these brave young veterans and their families to give them access to the best care possible after risking their lives to defend our country.

Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} H.R. 2600 - also known as the National Pediatric Acquired Brain Injury Plan (PABI Plan) Act - aims to streamline the system of care nationwide for the millions of American families faced with this issue every year, and the millions already living with its realities.  The PABI Plan Act is currently supported by more than 110 bi-partisan Members of Congress, including Representative Charlie Rangel and a number of his colleagues from New York (Reps. Grimm, Hayworth, Israel, King, Maloney, Reed, Tonko, Towns and Turner).  This $2.9 billion in funding over the next seven years will implement the PABI Plan which develops a seamless, standardized, evidence-based system of care for the millions of American families without adding a single cent to the national deficit, as all funds will be coming from the discretionary budget of the Department of Health and Human Services. These funds will finance improvements in prevention efforts, provide more accurate recognition of these injuries, help to standardize treatment in acute medical facilities nationwide, provide smooth reintegration back into the school system, assist with successful transition to adult life, as well as improve treatment in rural and exurban areas of the country with lesser access to emergency health care.  It will also build upon established tele-health systems and create a Virtual Center of Excellence developing an online ecosystem connecting families with clinicians and researchers.  Here is a recent featured article about HR 2600.

Additionally, the National PABI Plan Act would establish “PABI Centers of Excellence” in each state as well as Washington DC and Puerto Rico) to develop and implement a statewide Master PABI Plan. Columbia University Medical Center has already been selected as the State Lead Center for New York, and it will have a regional leadership responsibility in the Reintegration Category of Care, helping brain injured persons a smoothly transition back into their homes, schools, workplaces and communities. Upon passage, H.R. 2600 would provide the necessary funding to establish and build upon case management systems in every state and begin collecting the data across the continuum of care to create an evidence-based system of care.

With upwards of 80% of the youth in the juvenile justice systems across the county having a brain injury, PABI is a public health crisis and it is time for our legislators to take action and pass the National PABI Plan Act during the first half of 2012. We hope that you will support and follow along with our efforts and if you would like to learn more about what and why we are doing at the foundation, please take a few minutes and read my letter to Sarah Jane when she turned five, as well as by writing a letter to Congressman Rangel to thank him for his support of this very important piece of legislation.

While Sarah Jane cannot walk on her own or speak words right now, some day she will and she will be able to thank Congressman Rangel and the many bi-partisan political leaders for being her voice!