Working Nationally To Standardize Treatment of Pediatric Acquired Brain Injuries

April 14, 2012

ImageMy Name is Craig Sears, I am a survivor of Traumatic Brain Injury this event changed each and every single aspect of my life, forever, For years, I felt as though no one else knew what I was going through, but believe me Traumatic Brain Injury survivors almost ALWAYS experience the same things. Going through the aftermath of my Traumatic Brain Injury, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a National Pediatric Acquired Brain Injury plan, a proposed system of care that would be universally accessible for all children, and their families, regardless of where they live in the nation.

I’m writing to give you an update on HR 2600, the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act).

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 – and reports from the Centers for Disease Control and Prevention suggest that these numbers may even be underreported. HR 2600 – also known as the National Pediatric Acquired Brain Injury Plan (PABI Plan) Act – aims to streamline the system of care nationwide for the hundreds of thousands of American families faced with this issue every year, and the millions already living with its realities. Pediatric acquired brain injury includes not only traumatic events such as motor vehicle accidents, sports injuries, assaults, child abuse and falls, but also non-traumatic events such as strokes, brain tumors, pediatric AIDS, meningitis, infection and substance abuse. In addition, since pediatric acquired brain injury covers from birth to age 25, a number of our soldiers returning from conflicts in Iraq and Afghanistan are returning home with a life-altering traumatic brain injury. Surely we owe it to these brave young veterans to give them access to the best care possible after risking their lives to defend our country.

The National PABI Plan Act is currently supported by more than 110 Members of Congress, including Representatives James Himes and John Larson of Connecticut, and we hope to bring even greater attention to this issue not only locally, but also nationally by providing $2.9 billion in funding over the next seven years to help address PABI along the whole continuum of care, without adding a single cent to the national deficit, as all funds will be coming from the Department of Health and Human Services’ discretionary budget. 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 by establishing telehealth systems and a virtual center where families can correspond with medical professionals in order to receive the best medical care when visiting an emergency room simply isn’t an option.

Additionally, the National PABI Plan Act would establish “PABI centers of excellence” in each state (as well as Washington, DC and Puerto Rico) to facilitate this care from the moment of injury. Yale School of Medicine has already been selected as the State Lead Center for Connecticut, and it will have a regional leadership responsibility in the Adult Transition Category of Care, helping brain injury survivors transition into their adult lives. Upon passage, HR 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.

This past March was National Brain Injury Awareness Month, and the Sarah Jane Brain Foundation celebrated the launch with a March 1st press conference in Washington, DC where Congressman Leonard Lance, HR 2600’s primary co-sponsor, joined co-sponsors Reps. Chaka Fattah (D-PA), Mike McIntyre (D-NC) and Patrick Meehan (R-PA) in providing remarks on the bill. Several supporting organizations (including the American College of Sports Medicine, Pop Warner Little Scholars, National Association of Athletic Trainers and WebMD, among others) also participated in the event. This was followed by a separate press conference on March 14th at the Rhode Island state house where Governor Lincoln Chaffee joined co-sponsors David Ciccilline and James Langevin from Rhode Island, as well as Patrick Donohue and his six-year-old daughter Sarah Jane the namesake of the Sarah Jane Brain Foundation, myself and Dr. Victor Pedro in announcing their support of HR 2600. Finally, on March 19th, the House Energy and Commerce Committee Subcommittee on Health held a hearing entitled “A Review of Efforts to Prevent and Treat Traumatic Brain Injury” to which we took Sarah Jane.

PABI is a public health crisis in this country, 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 by visiting www.TheBrainProject.org as well as by writing letters to Congressmen James Himes and John Larson to thank them for their support of this very important piece of legislation.

Patrick Donohue is the Founder of the Sarah Jane Brain Foundation, which works to improve the system of care for those living with pediatric acquired brain injuries.

You can learn more about their efforts, as well as the National Pediatric Acquired Brain Injury Plan Act (HR 2600), by visiting www.TheBrainProject.org

It’s been an honor and privilege to be a part of their historic and groundbreaking work.

 

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H.R. 2600: National Pediatric Acquired Brain Injury Plan

March 25, 2012

March 25, 2012

To Whom It May Concern.

My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury.

I am writing on behalf of the Sarah Jane Brain Foundation, and I am adding my support as a Traumatic Brain Injury advocate to their goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries (PABI). This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American adults who yearly suffer a TBI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI. This injury is being called the signature wound of these conflicts. This is my Story:

My advocacy started as means to overcome my own difficulties. It’s become my mission to make sure that no one else has to go through what I have.

It was July 9th, 1987, and it was a beautiful Connecticut summer afternoon. I was out driving my motorcycle. I had just turned 20 years old and I had a lot going for me. I was making a very good life for myself. I had a great family. I had a good job in construction and also as a part time mechanic. I was making good money for a kid my age. I had a great social life, lots of friends, and I was very popular. I had a great girlfriend. I had 2 cars, a motorcycle, and lived in a nice condo right on the water. I was living the American Dream. Life was great.

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn’t stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb.

I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.

Though my body was healing, a bigger problem went untreated. And no one realized it.  Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

My struggles were constant. I had to relearn everything, How to walk, how to talk, how to eat, how to use the bathroom. How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet there was the anguish of not knowing who I was.

Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next 9-months locked in against my will, slowly regaining my memory, and a growing sense that this type of life wasn’t for me.

I was angry. I wanted out. I began calling out to anyone who would listen to me Town officials, State Government, anyone who could get me out. While I knew I didn’t need to be there, I did know that I needed help in other areas. But the help I needed wasn’t available. This was not a mental health issue.

Eventually, a sympathetic ear at the Connecticut Governor’s office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out.

And it was clear to them that I was right. But where was I to go?

I had only one real option, and that was my family. Yet I didn’t want to be a burden to my parents. I applied for Section 8 disability housing, and was put on a waiting list. I was turned down repeatedly.

So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes.

I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was.

With time and my families help, things began to improve for me. My mother got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital. That gave me access to their physical therapy rooms. I’d learn what they were doing for rehabilitation and go back home at night to do the exercises on my own in order to regain my strength and abilities. But without any medical oversight, I’d over do it. I hurt myself repeatedly. Many times, my mother took me to the hospital because I hurt so bad that I couldn’t walk or move.

Socially, things were awkward. One day after volunteering, I was leaving the hospital. I saw a woman fall to the floor. My instincts were to grab a wheelchair, put her in it and run her into the emergency room. I thought I was doing the right thing. But in reality, my actions upset the emergency room staff, and the next day, the hospital asked me not to return. I was crushed.

One of the lasting consequences of my TBI was that I would slur my words when I spoke. And my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously.

It became harder and harder to find where I fit in. With the help of my family, I moved into and out of different apartments. But the pieces of mind and my life didn’t fit quite right. I was restless, and depressed. I struggled to cope. I turned to what I had seen so many others do on the streets: alcohol and drugs. I had learned the wrong way to deal with my problems. I thought it would help me forget all that I had gone through.

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8’x 10′ cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage, does that sound like justice to you?

The police, the court, the judge and the law, didn’t know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.

In the 1990’s I became a member of Connecticut’s class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut’s Acquired Brain Injury/Traumatic Brain Injury (ABI/TBI) Medicaid Waiver, implemented in 1999. This waiver allows the state to permit organizations to provide non-medical services to people with TBI enabling them to live in the community outside of nursing homes and institutions.

While in prison, I learned that I was part of a class action lawsuit that resulted in the implementation of Connecticut’s ABI/TBI Medicaid Waiver Program.  I immediately requested that I be provided a program upon my release from prison! Thank God My mother was able to get me into a program after 16 years of being thrown into this deplorable life of hell!

During and after the program, I needed to find a place to call home, after 18 years of waiting and being turned down; I turned to a local Congressman’s office for help, Former Congressman Christopher Shays. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD subsidized housing unit.

(Fact) – The US says we have rights; but the State’s trample all over them as if they are immune to our constitutional rights.

Again my personal experience with the constitution state

Due to my injury I have memory problems, speech problems, balance issues and many other things.  I am disabled because of this and receive services from the state, which enable me to remain in the community instead of in a nursing home, in prison or on the streets. However, the State of Connecticut wrongly took away those services, for no reason and without notice.

I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community-based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.

(I’m damned if I do and I’m damned if I don’t.) – From my Fair Hearing Statement

After an annual review, of my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Services (herein referred to as the Department) social workers, Carolyn Wright, myself’ former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I had recently issued to the Department a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider and I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by me, the Department has essentially suspended all of my ABI Waiver services without a formal notice, and without cause. Despite having a current service plan that was approved by the Department, I have been without any services since August 29, 2009.

Sec. 17b-260a-1I, Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care. When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of my choice, resulting in a complete absence of services. Sec. 17b-260a-1J7 states that it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.

While the Department may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current Department approved ABI Waiver service plan. The Department has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan. Sec. 17b-260a-1J2c Responsibilities of the Department, The Department shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver. Furthermore, the Department has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting.  In addition, I was not present, nor was my advocate and neuropsychologist. Sec. 17b-260a-1G4 the service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the Department social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.

I request the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, the Department has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restrictive environment.

Fortunately I am a strong advocate for myself and after many phone calls, including to my local Congressman’s office, James Himes [D-CT4] I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed.

It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a Traumatic Brain Injury in my shoes would likely not have had the ability to advocate for him or herself as I did, and without services they would not have anybody else willing to do it on their behalf.  This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me – it’s like taking candy from a baby!

There is a national organization called the Sarah Jane Brain Foundation whose Advisory Board wrote a national plan (the National Pediatric Acquired Brain Injury Plan) which would help in situations such as mine. The plan calls for the development of 52 State Lead Centers of Excellence, which would, among other things, have case managers specially trained to assist children and young adults with brain injuries.

If the National PABI Plan was in place, that case manager would have stepped in during my crisis and been my advocate.  These people would be trained to help those who cannot help themselves.  Imagine what would have happened to someone else in my same shoes that did not know to contact the people that I contacted to get my services back!  They would have not gotten them reinstated and would have ended up on the streets, in prison or dead.

Going through the aftermath of my TBI, I teamed up with The Sarah Jane Brain Foundation to help promote the need for a National Pediatric Acquired Brain Injury PABI plan, a proposed system of care that would be universally accessible for all children, and their families, regardless of where they live in the nation.

I would like to say I consider myself to be a very fortunate brain injury survivor, and to be a “voice” for these forgotten children and families.

In the words of Congressman Leonard Lance, the initial sponsor of HR 2600, “When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support. Systems of care are different from state to state, random from school district to school district and vary from one doctor’s office to another. What is needed is a national clearing house of information and resources for children impacted by brain injuries and their families.”

Specifically, Congressman Lance’s legislation would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state’s unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. 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.

The legislation will also focus on individuals with a Mild Traumatic brain injury, which accounts for more than 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities, which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports related injuries by providing additional information, resources and care.

Today more awareness has occurred, but there is still much to learn, much like no two brain injuries are alike. The learning impact between different students will also not be alike.

Some states place services for individuals with TBI under Developmental Disabilities or under Mental Health Services. TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues.  Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues. TBI is an injury “Injuries require care, care that we all need, care that this plan can provide!

Quick Facts about PABI:

1) PABI is the #1 leading cause of death and disability for American youth

2) PABI is caused by
A) Trauma: traumatic brain injury (TBI), such as motor vehicle crashes, abusive head trauma/Shaken Baby Syndrome, sports-related concussions, falls, gunshot wounds, blast injury from war, etc.

B) Non-trauma: strokes, brain tumors, meningitis, seizures, near-drowning, etc.

3) Over 765,000 American youth enter an Emergency Department annually with a new TBI

4) Over 80,000 American youth are hospitalized annually with a new TBI

5) Over 11,000 American youth die annually due to TBI

6) These numbers do not reflect the significantly greater number of TBI cases that are not identified nor the number of non-traumatic acquired brain injuries

7) Upwards of 80% of the youth in juvenile detention centers across America have some form of a brain injury

This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.

Congressman Lance’s bill would ensure families wouldn’t have to reinvent the wheel when their child is impacted with a brain injury

Being a survivor of a TBI my journey made me all-too familiar with the difficulties of individuals and families working through the arbitrary system of care.

It’s been 24 years since my injury and there is not a day that goes by where I’m not haunted by my past experiences and wake up in a sweat, yelling and screaming. I can’t help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury TBI.

As a brain injury survivor, I know firsthand how awful it is to have lost my independence.  I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my “tool-box” (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down.

My back is against the wall!

Over time everyone in my family has moved out of Connecticut (CT) and they have asked me to go with them, I looked into it and was told that there is a 5 year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list, been there done that. Insanity is not doing the same thing over and over again expecting different results; insanity is doing the same thing over and over again knowing full well what the results will be.

It’s bad enough trying to find anyone that knows anything about brain injury, I’ve been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don’t need to tell what to do; Or anyone that does not talk down to me like I’m a 2 year old.

I have kept in this “box” where I’m very limited on what I can do.  I believe that my rehabilitation has been curtailed as a result.  I am frequently required to see a doctor or go into a state team meeting and prove that I am disabled.

For years, I felt as though no one else knew what I was going through, but believe me; Traumatic Brain injury survivors almost ALWAYS experience the same things.

“HAVE A HEART – SAVE A BRAIN”

For myself, I wish on that July afternoon that there were a national PAPI plan in place. I wish that the doctors, and nurses, and all the states, cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn’t even know I had, and the resources in place for me. I wonder how different my life and my family’s lives would be today.

Patrick Donohue’s dedication to his daughter is beyond words, he is a true leader and role model for every single parent in the world.

It’s been an honor and privilege to be a part of their historic and groundbreaking work.

I support H.R.2600: National Pediatric Acquired Brain Injury Plan Act.

Sincerely,

Craig Sears,

A Voice for Traumatic Brain Injury


The Sarah Jane Brain Foundation launches worldwide campaign for Brain Injury Awareness Month

February 23, 2012

The Sarah Jane Brain Foundation launches worldwide campaign for Brain Injury Awareness Month

We are launching a worldwide campaign, “Have A Heart – Save A Brain” during Brain Injury Awareness month beginning on March 1 in Washington, DC and then we are heading to Iran and all over the world (see details below).
Please encourage you…r friends to replace their Facebook profile picture during March with the attached logo “Have A Heart – Save A Brain” and join our cause.

Our first event will be Thursday, March 1 in DC with a special screening of Dr. Sanjay Gupta’s CNN documentary about concussions in high school football (http://tinyurl.com/GuptaScreening) and then we will be traveling to Mashad, Iran to particpate in an International Congress on Road Safety (http://www.razavihospital.com/Default.aspx?tabid=609&language=en-US). Brain injuries can be caused by trauma (motor vehicle crashes, sports concussions, child abuse, blast injury from war) or non-trauma (strokes, tumors, meningitis).

Please let us know if you would like to attend any of these events or would like to know of other events that are happening. Some FACTS ABOUT BRAIN INJURY:
Brain Injury is the #1 leading cause of death and disability for American youth
More than 765,000 American youth enter an Emergency Department each year with a new brain injury (comparing that to 56,000 new cases of HIV and 24,000 new cases of autism annually)
Every 40 seconds another American youth is sustaining a new brain injury
More than 80,000 American youth are hospitalized each year with a brain injury and over 11,000 die annually due to a brain injury
Upwards of 80% of the youth in Juvenile Detention Centers in America suffer from a brain injury yet most of these injuries are not diagnoses nor treated
HR 2600 is the largest national initiative dealing with brain injury in our country’s history ($2.9 Billion over the next seven years) and it has over 100 bi-partisan co-sponsors

All the best, Patrick

Patrick B. Donohue, Esq.
Founder, The Sarah Jane Brain Foundation
1501 Broadway – Suite 12099
New York, NY 10036
(212) 576-1180
www.TheBrainProject.org/lettertosarahjane.php (please read my letter to Sarah Jane when she turned five if you haven’t arleady done so)!

Details of some of the events taking place around the world:
Throughout the month of March, The Sarah Jane Brain Foundation will be traveling around the world, raising awareness about the #1 leading cause of death and disability for youth, brain injury. Below is a list of some of the events we will be participating in (other events will be announced throughout the month):

March 1: Capitol Hill, Washington, D.C.
Special screening of CNN’s Dr. Sanjay Gupta Reports’ documentary “Big Hits, Broken Dreams” about youth sports concussions in high school football, followed by a panel of SJBF International Advisory Board Members of former athletes and experts about the latest prevention, identification and treatment of concussions in youth sports.

March 8-9: Razavi Hospital, Mashad, Iran
The 1st International Congress on Road Safety aims to increase and spread scientific knowledge about reducing traffic crashes, injuries and fatalities. A team of SJBF International Advisory Board Members will be presenting at this conference.

March 14: Providence, Rhode Island
Press conference with Governor Lincoln Chafee, Congressmen James Langevin and David Cicilline, local officials and SJBF International Advisory Board Members discussing the broad-based bi-partisan support for HR 2600, the federal legislation with 100+ Members of Congress who are co-sponsoring that will fund a $2.9 Billion, seven-year national initiative to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan)

March 21-25: Edinburgh, Scotland
A team of SJBF International Advisory Board Members will attend and participate in The Ninth International Brain Injury Association World Congress


A single voice is often unheard but a thousand voices can shake the world.

November 20, 2011

I wanted to provide everyone with a quick update on HR2600, The National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act) that will fund a $2.9 Billion, seven-year federal initiative to implement the PABI Plan.  As of this week we have over 100 bi-partisan co-sponsors

Below is a list of the co-sponsors as of November 18, 2011. If you don’t see your Member of Congress please Email: ted@TheBrainProject.org : the name he will email you the name/phone of the staff person to call & leave a 30-second message encouraging them to be a co-sponsor of the PABI Plan Act

Some of the highlights of the support the PABI Plan Act (HR 2600) has generated include:

  • The most conservative Member of the House, Rep. Mike Pence (R-IN) and the most liberal Member of the House, Rep. Tammy Baldwin (D-WI)
  • Five Republican Committee Chairs: Reps. Buck McKeon (R-CA, Chair-Armed Services), Peter King (R-NY, Chair-Homeland Security), Spencer Bachus (R-AL, Chair-Financial Services), Ralph Hall (R-TX, Chair-Science) and Jo Bonner (R-AL, Chair-Ethics) as well as six Ranking Democrats: Reps. Barney Frank (D-MA, Ranking-Financial Services), Howard Berman (D-CA, Ranking-Foreign Affairs), Bob Brady (D-PA, Ranking-Administration), Ed Markey (D-MA, Ranking-Natural Resources), Nick Rahall (D-WV, Ranking-Transportation) and Eddie Bernice Johnson (D-TX, Ranking-Science)
  • The Chair of the National Republican Congressional Committee, Rep. Pete Sessions (R-TX) and the Chair of the Democratic Congressional Campaign Committee, Rep. Steve Israel (D-NY)
  • Broad-based, bi-partisan support in the Energy and Commerce Committee: Reps. Michael Burgess (R-TX), Marsha Blackburn (R-TN), Bob Latta (R-OH), Cathy McMorris-Rodgers (R-WA), Gregg Harper (R-MS), Leonard Lance (R-NJ), David McKinley (R-WV), Brian Bilbray (R-CA), Adam Kinzinger (R-IL) and Reps. Edolphus Towns (D-NY), Bobby Rush (D-IL), Michael Doyle (D-PA), Tammy Baldwin (D-WI), Mike Ross (D-AR), John Barrow (D-GA), Ed Markey (D-MA)
  • GOP Freshmen Members: Reps. Blake Farenthold (R-TX), Stephen Fincher (R-TN), Mike Fitzpatrick (R-PA), Tim Griffin (R-AR), Michael Grimm (R-NY), Frank Guinta (R-NH), Nan Hayworth (R-NY), Joe Heck (R-NV), Bill Johnson (R-OH), Adam Kinzinger (R-IL), David McKinley (R-WV), Patrick Meehan (R-PA), Jon Runyan (R-NJ), Steven Palazzo (R-MS), Allen West (R-FL) 

Co-sponsors of HR2600 as of November 18, 2011: Baca, Joseph N. “Joe” [CA-43], Bachus, Spencer [AL-6], Baldwin, Tammy [WI-2], Barrow, John [GA-12], Berman, Howard [CA-28], Bilbray, Brian [CA-50], Bishop, Sanford [GA-2], Blackburn, Marsha [TN-7], Blumenauer, Earl [OR-3], Bonner, Jo [AL-1], Brady, Robert A. [PA-1], Brown, Corrine [FL-3], Burgess, Michael C. [TX-26], Burton, Dan [IN-5], Capito, Shelley Moore [WV-2], Carnahan, Russ [MO-3], Carson, Andre [IN-7], Clarke, Hansen [MI-13], Connolly, Gerald E. “Gerry” [VA-11], Crenshaw, Ander [FL-4], Davis, Danny K. [IL-7], Diaz-Balart, Mario [FL-21], Doyle, Michael F. [PA-14], Farenthold, Blake [TX-27], Fincher, Stephen [TN-8], Fitzpatrick, Mike [PA-8], Frank, Barney [MA-4], Fudge, Marcia L. [OH-11], Gallegly, Elton [CA-24], Green, Al [TX-9], Griffin, Tim [AR-2], Grijalva, Raul M. [AZ-7], Grimm, Michael G. [NY-13], Guinta, Frank [NH-1], Hall, Ralph [TX-4], Harper, Gregg [MS-3], Hayworth, Nan A.S. [NY-19], Heck, Joseph J. [NV-3], Heinrich, Martin [NM-1], Himes, James A. [CT-4], Israel, Steve [NY-2], Jackson Lee, Sheila [TX-18], Jackson, Jesse L., Jr. [IL-2], Johnson, Bill [OH-6], Johnson, Eddie Bernice [TX-30], Johnson, Hank [GA-4], Jones, Walter [NC-3], Kildee, Dale E. [MI-5], King, Peter T. [NY-3], Kinzinger, Adam [IL-11], Kissell, Larry [NC-8], Langevin, Jim [RI-2], Larson, John B. [CT-1], Latham, Thomas “Tom” [IA-4], Latta, Robert [OH-5], Lewis, John [GA-5], Loebsack, David [IA-2], Maloney, Carolyn B. [NY-14], Markey, Ed [MA-7], McCotter, Thad [MI-11], McGovern, James P. [MA-3], McIntyre, Mike [NC-7], McKeon, Howard P. “Buck” [CA-25], McKinley, David B. [WV-1], McMorris Rodgers, Cathy [WA-5], Meehan, Patrick [PA-7], Michaud, Michael [ME-2], Miller, Brad [NC-13], Moran, James P. [VA-8], Norton, Eleanor Holmes [DC], Palazzo, Steven M. [MS-4], Payne, Donald M. [NJ-10], Pence, Mike [IN-6], Rahall, Nick [WV-3], Rangel, Charles B. [NY-15], Reed, Tom [NY-29], Richardson, Laura [CA-37], Rivera, David [FL-25], Ross, Mike [AR-4], Runyan, Jon [NJ-3], Rush, Bobby L. [IL-1], Ryan, Tim [OH-17], Schiff, Adam B. [CA-29], Schmidt, Jean [OH-2], Schock, Aaron [IL-18], Sessions, Pete [TX-32], Sires, Albio [NJ-13], Stivers, Steve [OH-15], Thompson, Glenn [PA-5], Tiberi, Patrick J. [OH-12], Tierney, John [MA-6], Tonko, Paul [NY-21], Towns, Ed [NY-10], Tsongas, Niki [MA-5], Turner, Robert L. [NY-9], Walz, Timothy [MN-1], West, Allen [FL-22], Yarmuth, John A. [KY-3], Young, Don [AK]; Primary Sponsor: Lance, Leonard [NJ-7]

Craig Sears

The Sarah Jane Brain Foundation

International Advisory Board

339 5th Avenue-Suite405

New York,NY10016

212.576.1180                  

www.TheBrainProject.org


H.R.2600: National Pediatric Acquired Brain Injury Plan Act of 2011

August 7, 2011

Dear Congressman/woman:                                                         August 2011

My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury. I am writing on behalf of the Sarah Jane Brain Foundation to thank you for co-sponsoring HR 2600, also known as The National Pediatric Acquired Brain Injury Plan Act of 2011. I applaud you for being a co-sponsor of this critically important groundbreaking legislation. I am adding support to the goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries, helping to protect the children of tomorrow from ever having to experience the horror and heartache of traumatic brain injury. This legislation will also help the thousands of troops returning from Iraqand Afghanistanwith the “signature wound” of these conflicts – TBI.

My advocacy started as means to overcome my own difficulties. It’s become my mission to make sure that no one else has to go through what I have. This is my personal experience about what happens when brain injury goes untreated…

It was July 9th, 1987, and it was a beautiful summer afternoon. I was out driving my motorcycle. I had just turned 20 years old and I had a lot going for me. I was making a very good life for myself. I had a great family. I had a good job in construction and also as a part time mechanic. I was making good money for a kid my age. I had a great social life, lots of friends, and I was very popular. I had a great girlfriend. I had 2 cars, a motorcycle, and lived in a nice condo right on the water. I was living the American Dream. Life was great.

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn’t stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb, just missing a telephone pole.

I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.

Though my body was healing, a bigger problem went untreated. And no one realized it. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury as being a Traumatic Brain injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

My struggles were constant. I had to relearn everything, How to walk, how to talk, how to eat, how to use the bathroom. How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet there was the anguish of not knowing who I was.

Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next 9 months locked in against my will, slowly regaining my memory, and a growing sense that this type of life wasn’t for me.

I was angry. I wanted out. I began calling out to anyone who would listen to me – Town officials, State Government, anyone who could get me out. While I knew I didn’t need to be there, I did know that I needed help in other areas. But the help I needed wasn’t available. This was not a mental health issue.

Eventually, a sympathetic ear at the Connecticut Governor’s office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out. And it was clear to them that I was right. But where was I to go?

I had only one real option, and that was my family. Yet I didn’t want to be a burden to my parents. I applied for Section 8 disability housing, and was put on a waiting list. I was turned down repeatedly.

So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this, too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes.

I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was.

With time and my family’s help, things began to improve for me. My family got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital. That gave me access to their physical therapy rooms. I’d learn what they were doing for rehabilitation and go back home at night to do the exercises on my own in order to regain my strength and abilities. But without any medical oversight, I’d over do it. I hurt myself repeatedly. Many times, my mother took me to the hospital because I hurt so bad that I couldn’t walk or move.

Socially, things were awkward. One day after volunteering, I was leaving the hospital. I saw a woman fall to the floor. My instincts were to grab a wheelchair, put her in it and run her into the emergency room. I thought I was doing the right thing. But in reality, my actions upset the emergency room staff, and the next day, the hospital asked me not to return. I was crushed.

One of the lasting consequences of my TBI was that I would slur my words when I spoke. And my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously.

It became harder and harder to find where I fit in. With the help of my family, I moved into and out of different apartments. But the pieces of mind and my life didn’t fit quite right. I was restless, and depressed. I struggled to cope. I turned to what I had seen so many others do on the streets: alcohol and drugs. I had learned the wrong way to deal with my problems. I thought it would help me forget all that I had gone through.

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. Why? Because there was no help for TBI survivors, I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

The police, the court, the judge and the law, didn’t know, care or consider TBI, or the fact that I had one. And once behind bars, neither did the warden. I served 5 years for what other people would sleep off overnight in the local lockup, and then clear up with a brief court appearance. Instead, I ended up inside a level four, high security prison, surrounded by gang members, rapists, killers, and child molesters. I was locked in a 9’x12′ cell twenty-four hours a day with a vicious inmate next to me.

While behind bars, I received absolutely no help for my disabilities. There was no early release, or time off for good behavior from my sentence. TBI or not, I served every measure of that sentence to the fullest. And I suffered regularly the indignities associated with such an environment that common decency prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. And again I needed a place to call home. After 20 years of waiting and being turned down, I turned to a local Congressman’s office for help. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD Section 8 housing unit.

Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with TBI get the help they need, and to avoid the mistakes, and missteps I made.

Due to my injury I have memory problems, speech problems, balance issues and many other things. I am disabled because of this and receive services from the state which enable me to remain in the community instead of in a nursing home, in prison or on the streets.

However, August 29, 2009, the State of Connecticut wrongly took away those services, without reason or notice. Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman’s office (Congressman Jim Himes), I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for states to discriminate against and take advantage of someone like me – it’s like taking candy from a baby!

The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth: brain injury.

In the words of Congressman Leonard Lance, the initial sponsor of HR 2600, “When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support. Systems of care are different from state to state, random from school district to school district and vary from one doctor’s office to another. What is needed is a national clearing house of information and resources for children impacted by brain injuries and their families.”

Specifically, this legislation would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state’s unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. 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.

The plan calls for each of these 52 State Lead Centers of Excellent to have case managers specially trained to assist children and young adults with brain injuries. If the National PABI Plan were in place, that case manager would have stepped in during my crisis and been my advocate. These people would be trained to help those who cannot help themselves. Imagine what would have happened to someone else in my same shoes who did not know to contact the people that I contacted to get my services back! They would have not gotten them reinstated and would have ended up on the streets or in prison or dead, that’s what.

The legislation will also focus on individuals with a Mild Traumatic brain injury (including concussions) which account for more than 80 percent of brain injuries each year, as well as rural communities which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports related injuries by providing additional information, resources and care.

According to the Centers for Disease Control, more than 765,000 American youth aged 25 and younger enter an emergency department every year with a new traumatic brain injury. More than 80,000 are hospitalized and over 11,000 die annually. This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries.

This is why the goal and mission of the Sarah Jane Brain Foundation are so very important. For myself, I wish on that July afternoon over 20 years ago, that there was a National Pediatric Acquired Brain Injury Plan in place for me. I wish that the State, doctors, and nurses, and all the cops, judges, and people whoever had the power over me had a clue about Traumatic brain injury. I wish that when I needed it, there were people to turn to, answers to the questions I didn’t even know I had, and the resources in place for me. I wonder how different my life would be today.

The United States calls July 4th Independence Day. As a Brian injury survivor I know first hand what its like to have lost my independence. The day this is signed into law I call it Independence Day across the Nation for Brian injury survivors and their families. Thank you to everyone that has been involved in this history making moment for brain injury.
Sincerely,

Craig Sears,

A Voice for Traumatic Brain Injury

H.R.2600
Latest Title: National Pediatric Acquired Brain Injury Plan Act of 2011
Sponsor: Rep Lance, Leonard [NJ-7] (introduced 7/20/2011)      Cosponsors 
Latest Major Action: 7/20/2011 Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.


Rep Bachus, Spencer [AL-6] – 7/25/2011
Rep Baldwin, Tammy [WI-2] – 7/20/2011
Rep Barrow, John [GA-12] – 7/20/2011
Rep Berman, Howard L. [CA-28] – 7/27/2011
Rep Blackburn, Marsha [TN-7] – 7/20/2011
Rep Blumenauer, Earl [OR-3] – 7/20/2011
Rep Bonner, Jo [AL-1] – 7/20/2011
Rep Brady, Robert A. [PA-1] – 7/20/2011
Rep Brown, Corrine [FL-3] – 7/20/2011
Rep Burgess, Michael C. [TX-26] – 7/20/2011
Rep Burton, Dan [IN-5] – 7/20/2011
Rep Capito, Shelley Moore [WV-2] – 7/20/2011
Rep Carson, Andre [IN-7] – 7/20/2011
Rep Connolly, Gerald E. “Gerry” [VA-11] – 7/20/2011
Rep Crenshaw, Ander [FL-4] – 7/25/2011
Rep Davis, Danny K. [IL-7] – 7/25/2011
Rep Diaz-Balart, Mario [FL-21] – 7/27/2011
Rep Doyle, Michael F. [PA-14] – 7/20/2011
Rep Fincher, Stephen Lee [TN-8] – 7/27/2011
Rep Frank, Barney [MA-4] – 7/20/2011
Rep Fudge, Marcia L. [OH-11] – 7/20/2011
Rep Gallegly, Elton [CA-24] – 7/20/2011
Rep Griffin, Tim [AR-2] – 7/27/2011
Rep Grijalva, Raul M. [AZ-7] – 7/20/2011
Rep Grimm, Michael G. [NY-13] – 7/20/2011
Rep Harper, Gregg [MS-3] – 7/20/2011
Rep Himes, James A. [CT-4] – 7/20/2011
Rep Israel, Steve [NY-2] – 7/25/2011
Rep Jackson Lee, Sheila [TX-18] – 7/20/2011
Rep Jackson, Jesse L., Jr. [IL-2] – 7/20/2011
Rep Johnson, Henry C. “Hank,” Jr. [GA-4] – 7/27/2011
Rep Kildee, Dale E. [MI-5] – 7/20/2011
Rep King, Peter T. [NY-3] – 7/20/2011
Rep Kissell, Larry [NC-8] – 7/20/2011
Rep Langevin, James R. [RI-2] – 7/25/2011
Rep Larson, John B. [CT-1] – 7/20/2011
Rep Latta, Robert E. [OH-5] – 7/27/2011
Rep Lewis, John [GA-5] – 7/25/2011
Rep Maloney, Carolyn B. [NY-14] – 7/20/2011
Rep McGovern, James P. [MA-3] – 7/20/2011
Rep McKeon, Howard P. “Buck” [CA-25] – 7/20/2011
Rep McKinley, David B. [WV-1] – 7/20/2011
Rep McMorris Rodgers, Cathy [WA-5] – 7/20/2011
Rep Meehan, Patrick [PA-7] – 7/20/2011
Rep Michaud, Michael H. [ME-2] – 7/25/2011
Rep Miller, Brad [NC-13] – 7/20/2011
Rep Moran, James P. [VA-8] – 7/20/2011
Rep Norton, Eleanor Holmes [DC] – 7/20/2011
Rep Payne, Donald M. [NJ-10] – 7/20/2011
Rep Pence, Mike [IN-6] – 7/20/2011
Rep Rahall, Nick J., II [WV-3] – 7/27/2011
Rep Rangel, Charles B. [NY-15] – 7/20/2011
Rep Richardson, Laura [CA-37] – 7/20/2011
Rep Ross, Mike [AR-4] – 7/20/2011
Rep Runyan, Jon [NJ-3] – 7/20/2011
Rep Rush, Bobby L. [IL-1] – 7/20/2011
Rep Ryan, Tim [OH-17] – 7/20/2011
Rep Schiff, Adam B. [CA-29] – 7/20/2011
Rep Sessions, Pete [TX-32] – 7/20/2011
Rep Sires, Albio [NJ-13] – 7/20/2011
Rep Tiberi, Patrick J. [OH-12] – 7/20/2011
Rep Towns, Edolphus [NY-10] – 7/27/2011
Rep Yarmuth, John A. [KY-3] – 7/20/2011


National Pediatric Acquired Brain Injury Act was introduced in Congress

July 3, 2011

As a member of the Sarah Jane Brain Foundation National Advisory Board – Family I am pleased to report that Congressman Leonard Lance (NJ-6) announced federal legislation to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) at Overlook Medical Centeron Thursday, June 30, 2011. Joining Congressman Leonard Lance Barbara Geiger-Parker (CEO of the Brain Injury Association of New Jersey) Alan Leiber (CEO of Overlook Medical Center) Patrick Donohue and his six-year-old daughter Sarah Jane the namesake of the Sarah Jane Brain Foundation, along with Brain Injury Survivor Craig Sears and other families’ advocates and professionals

The National Pediatric Acquired Brain Injury Plan (PABI Plan) develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth: brain injury.

When a child suffers a brain injury, every American family is confronted with difficult decisions in terms of care, research and support. Systems of care are different from state to state, random from school district to school district and vary from one doctor’s office to another.  What is needed is a national clearing house of information and resources for children impacted by brain injuries and their families, said Congressman Lance.

Specifically, Lance’s legislation would create a national network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, with the responsibility of implementing the PABI Plan based on their own state’s unique demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. 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.

The legislation will also focus on individuals with a Mild Traumatic brain injury which accounts for more than 80 percent of brain injuries each year, commonly referred to as concussions, as well as rural communities which account for 25 percent of the population and have higher incidence rates of brain injuries. For example, the 52 State Lead Centers would help children suffering from sports related injuries by providing additional information, resources and care.

According to the Centers for Disease Control, more than 765,000 American youth aged 25 and younger enter an emergency department every year with a new traumatic brain injury.  More than 80,000 are hospitalized and over 11,000 die annually.

During a news conference atOverlookMedicalCenter, Barbara Geiger-Parker, president and CEO of the Brain Injury Association of New Jersey, and other community leaders discussed their support for Lance’s legislation.

This Act develops a seamless, standardized, evidence-based system of care that will benefit many American families whose children have sustained brain injuries. We applaud Congressman Lance for being the lead sponsor of this critically important groundbreaking legislation, said Barbara Geiger-Parker, president and CEO of the Brain Injury Association of New Jersey.

This is a historic day for the millions of American youth who suffer from the number one leading cause of death and disability, brain injury, as well as their families.  Congressman Lance’s bill would ensure families won’t have to reinvent the wheel when their child is impacted with a brain injury, said Patrick Donohue the founder of The Sarah Jane Brain Foundation.

I can honestly say for myself, I wish on that July afternoon 20 + years ago, that there was a national PABI plan in place. I wish that the States, doctors, and nurses, and all the cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn’t even know I had, and the resources in place for me. I wonder how different my life would be today.

The day this is signed into law I call it Independence Day across the Nation for Brian injury survivors.

Thank you to everyone that has been involved in this history making moment.

Sincerely,

Craig Sears


Jobs available to Change The World! The Sarah Jane Brain Foundation

December 3, 2010

The Sarah Jane Brain Foundation is preparing to launch a nationwide tour in 2011 to educate the public about the #1 cause of death and disability for American youth: pediatric acquired brain injury. The tour will start in early 2011 and is currently planned to last at least six months and will travel to over 30 different states. We will be traveling to local high schools informing them about the risks and symptoms of sports-related concussions (brain injury), setting up town hall meetings at hospitals and universities introducing the National Pediatric Acquired Brain Injury Plan (PABI Plan) as real healthcare reform and attending professional, college and youth sporting events to raise awareness about brain injury to a more broad-based audience. We will be working with our International Advisory Board to involve local experts in each location to make these presentations more personal and have a lasting impact.

The implementation of the PABI Plan will change the world for millions of families who have a child or young adult suffering from a brain injury as well as preventing these injuries from occurring in the first place! In addition to implementing the PABI Plan, our mission is to advance our knowledge of the brain 50 years in the next five!

We are now accepting resumes for several positions involved in this tour. If you know anyone who is interested in applying for one of these positions, please ask them to follow these three simple instructions:

They should read my recent letter to Sarah Jane when she turned five which gives a good summary of what/why we are doing at The Sarah Jane Brain Foundation: www.TheBrainProject.org/lettertosarah…
They should email a cover letter explaining why they want to “change the world” for these families, what position they are applying for and a copy of their resume/CV to Jen Glaser: jen@thebrainproject.org
They should send a “friend request” to me (Patrick B. Donohue) on Facebook and join The Sarah Jane Brain Foundation cause on Facebook

Director of Special Events: The Director of Special Events will be an experienced planner to coordinate the national tour. This is a full-time job with a minimum six month commitment. The event coordinator will be the “team leader” for contacts in multiple cities, as well as for the core team of experts who will be presenting a youth sports concussion information session in schools across the country. The event coordinator will need to be able to think on their feet, juggle many different projects at once, be a strong representation of our organization, and be aware of the importance of the organization’s message. This position will work out of our headquarters in New York City. Annual salary commensurate with experience (range: $35,000-$50,000 plus benefits)

Traveling Positions: (please keep in mind these positions will be traveling for six months with their meals and lodging covered)

Director of Public Affairs: The Director of Public Affairs will be a tireless worker with a great attitude and a background in public relations and/or politics to work on a large-scale national event for a minimum of six months. The Director of Public Affairs will coordinate media outreach across the country, handle all promotion in advance of the arrival in each city, field all media questions, orchestrate press conferences on-site, and write press releases. The Director of Public Affairs will also be responsible for the political outreach and the coordination with the public affairs offices in political offices across the country. This is a full-time job that requires six-months of traveling all over the country in an RV. The Director of Public Affairs is an essential part of the team and will be representing the organization and the cause in cities all over the country. Annual salary commensurate with experience (range: $30,000-$40,000 plus benefits)

Assistant Director of Special Events: The assistant director of special events will be the on-site coordinator for all of the seminars and events in each city. The assistant director of special events will work closely with the Director of Special Events who will be doing coordinating from our headquarters in New York. A background in event planning, marketing, or public relations is preferred but not required. This position requires a six month commitment and will involve travel all over the country. Qualified applicants will need a valid driver’s license and a clean driving record as they will be needed to relieve the driver should it be necessary. There will be an opportunity to transition into a full-time position after six months. Weekly salary commensurate with experience (range: $400-$550/week plus benefits)

Driver/Production Assistant: The position will require a minimum six-month commitment. The driver/production assistant will need to be comfortable driving a 40-foot RV for long stretches of time, have a clean driving record, and a valid United States driver’s license. The production assistant part of the job will involve crowd control at events, managing street teams, setting up for press conferences, and watching the RV during presentations. There will be an opportunity to transition into a full-time position after six months. Weekly salary commensurate with experience (range: $400-$550/week plus benefits)

Intern positions: Intern positions will also be available – please contact our office directly for more information on these availabilities. There will be one full-time traveling internship position available with the person needing to commit to be traveling from late January through the end of June.

We will be announcing more details of the National PABI Tour soon!