TBI LINKS (View More Latest Blog Entries) ___________________________________________________________
protection and advocacy for persons with disabilities
(view more) National Disability Rights
http://www.ndrn.org
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http://craigsearsmyblog.wordpress.com/
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My Blogger page (Blogspot)- http://craigsears.blogspot.com/
___________________________________________________________ My Picasa Web Albums - craig.sears.tbi - http://picasaweb.google.com/craig.sears.tbi
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My Videos on YouTube http://www.youtube.com/user/craigsearstbi
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My Facebook page
http://www.facebook.com/craig.sears ___________________________________________________________
Bob Woodruff Foundation http://remind.org/ ___________________________________________________________
(View More) http://www.brainline.org
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Sarah Jane Brain Project
339 Fifth Ave. - Suite 405
Office: (212) 576-1180
(View More) www.TheBrainProject.org
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Traumatic Brain Injury (TBI) is a leading cause of death and disability among children and young adults in the United States. Each year, an estimated 1.5 million Americans sustain a TBI. That's 8 times the number of people diagnosed with breast cancer and 34 times the number of new cases of HIV/AIDS each year. As a consequence: *50,000 people die each year. *230,000 people are hospitalized annually and survive. *80,000 to 90,000 people experience the onset of long-term disability each year. *The cumulative result is that today an estimated 5.3 million people - 2% of the U.S. population - are living with a permanent TBI-related disability. THIS (featured in the URL Address Below) IS ONE profound example of what we aim for and advocate -- to believe that there is hope, and understand the need to help contribute to miracles to restore health, life, and to create the ability to live life productively toward the goal of everyone understanding how wonderful it is to live life happy, altruistically, and well.An acquired brain injury is an injury to the brain that occurs after birth. Traumatic brain injury is an insult to the brain caused by an external physical force, which may produce a diminished or altered state of consciousness that results in an impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning. These impairments may be either temporary of permanent and cause partial or total functional disability or psychosocial maladjustment.
The causes of brain injury are varied, and include car crashes, falls, assaults, sports-related mishaps, stroke, aneurysm, and domestic or child abuse. A brain injury may result in mild, moderate, or severe impairments in one or more areas, including cognition; speech-language communication; memory; attention and concentration; reasoning; abstract thinking; physical functions; psychosocial behavior; and information processing.
Every 21 Seconds One Person In The U.S. Sustains A Brain Injury.
Each year 230,000 persons are hospitalized with traumatic brain injury and survive ___________________________________________________________ ___________________________________________________________ "Traumatic brain injury can happn to anyone while doing sports riding a motorcycle or bicylce 4 wheeling rollreblading skiing/snowboarding for any kind of physical activity please listen to the recommended safety precautions and wear a Helmet" ___________________________________________________________ Footprints in the Sand Poem Last night I had a dream. I dreamed I was walking along the beach with the Lord. Across the sky flashed scenes from my life. For each scene, I noticed two sets of footprints in the sand: one belonged to me, the other to the Lord. After the last scene of my life flashed before me, I looked back at the footprints in the sand. I noticed that at many times along the path of my life, especially at the very lowest and saddest times, there was only one set of footprints. This really troubled me, so I asked the Lord about it. “Lord, you said once I decided to follow you, You’d walk with me all the way. But I noticed that during the saddest and most troublesome times of my life, there was only one set of footprints. I don’t understand why, when I needed You the most, You would leave me.” The Lord replied, “My son, my precious child, I love you and I would never leave you. During your times of suffering, when you could see only one set of footprints, it was then that I carried you.” ___________________________________________________________
Television
______________________________________________________________________________________________________________________ $930 million grant proposal announced
FOR IMMEDIATE RELEASE
August 18, 2009 Contact: Jennipher Dickens, Communications Director, The Sarah Jane Brain Foundation
(212) 201-0599 or Jennipher@TheBrainProject.org
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$930 million grant proposal announced
Largest grant proposal in history for pediatric brain injury
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NEW YORK, NY - An organization whose goal is to implement a national model system for young people with brain injuries announced today it had submitted the largest grant proposal in history dealing with the number one cause of death and disability for children and young adults in the United States.
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The Sarah Jane Brain Foundation (SJBF), in conjunction with its 52 State Lead Centers of Excellence (one in every state plus D.C. and Puerto Rico), submitted a $930 million multi-Department grant proposal today, requesting to utilize stimulus funds to implement its National Pediatric Acquired Brain Injury (PABI) Plan across the country. The entire grant proposal to the Departments of Health and Human Services, Education, Veterans Affairs, Transportation and Justice can be viewed from the website www.TheBrainProject.org .
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The National PABI Plan, a 104-page document that outlines the entire continuum of care for children and young adults with brain injuries, was created in January by the National Advisory Board of the SJBF. The National Advisory Board of the SJBF currently consists of over 100 of the top pediatric neurologists and rehabilitation experts from all over the country.
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The SJBF is one of the largest organizations in the country dealing with pediatric brain injury. It was founded in October 2007 by Patrick Donohue, whose now 4-year-old daughter Sarah Jane was shaken by her baby nurse when she was five days old, causing a severe brain injury.
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The organization purposely submitted its proposal on August 18 due to the significance of the day. Donohue noted, "Today is the birthday of Marilyn Spivack, the Honorary Chairwoman of our National Advisory Board and the mother of brain injury advocacy. It is in her honor that we submit this grant proposal today, with the hope that it will also forevermore be the 'birthday' of better care for children and young adults with brain injuries."
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Spivack, whose daughter sustained a traumatic brain injury in a car accident more than 30 years ago, founded the Brain Injury Association of America in 1980.
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The 52 State Lead Centers of Excellence will work together as well as with other institutions in their states and around the country to implement the PABI Plan, coordinating with others to ensure a seamless system of care.
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These institutions consist of many top-rated children's hospitals, research universities and health advocacy organizations staffed by the best pediatric neurologists and rehabilitation experts in the country (for full list see press release dated June 5 here.
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When fully implemented across the country, the National PABI Plan will create over 6,000 new jobs across all 50 states.
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Below are comments from various U.S. Senators and Representatives on their support of the National PABI Plan, the 52 State Lead Centers of Excellence, and the Sarah Jane Brain Project in general.
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"Each year, over 1 million American children suffer from some form of Pediatric Traumatic Brain Injury (PTBI). Sadly, too many times, such injuries lead to the premature loss of a child's life or a life-long disability. There is an immense need for more research to be conducted on the human brain, so the important work and information sharing facilitated by The Sarah Jane Brain Project benefits children and their families greatly. I am proud of the leadership and work that Oklahoma State University's Center for Health Science has provided within the state to address the issue of pediatric brain injury." - U.S. Sen. Jim Inhofe (R-OK)
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"Thousands of children with traumatic brain injuries will be treated and millions more will be protected from brain injuries as a result of this investment. The Sarah Jane Brain Project has done an incredible job of helping children and partnering with the Children's Hospital Boston/Harvard Medical Center will help them advance their efforts even further. We owe the Donohue Family a huge debt of gratitude for having the strength to turn a heartbreaking personal experience into something that has helped so many," - U.S. Sen. John Kerry (D-MA)
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"I'm pleased the University of Texas at Dallas for Brain Health has been selected to receive this important funding. The organization's efforts to combat pediatric brain injury continue to serve as an example for Texas. This grant will help them continue with their excellent research and advancements in the future." - U.S. Sen. John Cornyn (R-TX)
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"Pediatric Acquired Brain Injury changed your life, as it changed your entire family's life, and yet you have persisted in your goal. I greatly admire your fortitude, your determination and your will to persevere. You have successfully rallied to make a difference in the lives of many people and we thank you for that. I wish you and The Sarah Jane Brain Foundation all the best as you pursue this important work." - U.S. Sen. Joseph Lieberman (D-CT), in a letter of support addressed to Patrick Donohue
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"The Louisiana Health Care Quality Forum being selected as a State Lead Center is an integral first step in developing a seamless, standardized, evidence-based system of care for all children affected by Pediatric Acquired Brain Injury. With PABI known to be the leading cause of death and disability among our nation's children, I look forward to working with the Forum to both prevent these devastating injuries and to improve the lives of those families who are affected by them." - U.S. Sen. Mary Landrieu (D-LA)
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"As the leading cause of death and disability for our children, pediatric acquired brain injury impacts not just those specific families but all of us, and we look forward to working with you to both prevent these devastating injuries and to improve the lives of those families who experience them." - U.S. Congressman Patrick Kennedy (D-RI) in a letter of support to Patrick Donohue and Hasbro Children's Hospital
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"The Sarah Jane Brain Foundation is working with leading institutions from across the country to provide critical resources to families affected by Pediatric Acquired Brain Injury (PABI), and to collaborate with those families and institutions to improve research. I support this grant proposal because it would implement the National Pediatric Acquired Brain Injury Plan and improve the lives of children and young adults suffering from PABI." - Congresswoman Carol Shea-Porter (D-NH)
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To read the National PABI Plan in its entirety or to watch a video presentation on the plan, visit the SJBF website at www.TheBrainProject.org .
Books
No Limits But the Sky DREAM,DARE,PERSEVERE,SUCCEED ___________________________________________________________ What I Leave Behind*** I hope my achievements in life shall be these--- that I will have fought for what was right and fair, that I will risked for that which mattered, that I will have given help to those who were in need... that I will have left the earth a better place for what I've done and who I've been. ___________________________________________________________ A poem I wrote for Craig. I will remember you my friend for even though we only met your story has touched me so it's one I won't for get we share a similar one though I am on the other side we have one goal together it is to change people's lives your a MIRACLE standing in front of the line a Voice to be heard one to be noticed you can't waste any time your strength and determination and your love for life, people will LISTEN when you stand and fight so let your VOICE be heard let it be loud and clear fight for what you believe in that is why you are HERE. Written by Karen J. Jeffery March 8 08 for my friend Craig Sears myspace.com/searscraig a voice for Traumatic brain injury
Website: http://craigsears.blogspot.com
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Heroes
My mother for always being there for me accepting me for who I am. My Dad for introducing me to the 12 step program and showing me it can be done. My sister for always being there for her kids the way our mother is for us. My grandparents for always being there for us. Everyone that has help me over the years. An act of kindness is long remembered. Thank you. ___________________________________________________________
My name is Craig Sears. I'm a survivor of a traumatic brain injury. This is my personal experience about what happens when brain injury goes untreated.
It was July 9, 1987. It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20, and had a lot going for me. I was making a very good life for myself. I had a great family and a good job in construction and as a part-time mechanic. I was making good money for a kid my age. I had a great girlfriend and lots of friends. I had two cars and lived in a nice condo right on the water. I was living the American Dream. I'll leave that up to you to fill it in because I had everything a man could have possibly wanted — and in a heartbeat it was all gone.
As I was coming up over a hill, there was a car going the wrong way and I was unable to stop. We collided. I was thrown an estimated 40 feet into on-coming traffic. I landed headfirst into a curb.
I have no memory of the next six months. That period of time is a black hole in my life. I was in and out of a coma, undergoing multiple surgeries. From there I was transferred to a rehabilitation center. While I was in this treatment center, I had to relearn everything about life down to using the bathroom on my own. There, I was fighting against the physical pain and the pain of not knowing who I was. Then one day they decided to transfer me out to a locked, mental health ward in Bridgeport, Connecticut where I was constantly put in four-point restraints and forcefully drugged. (I was told there were no other services offered for people with traumatic brain injury.) After being in the mental health ward for nine months, I began to regain some memory and I knew this wasn't for me! Keep in mind traumatic brain injury is not a mental illness.
So I started to call around to town officials and state government offices to ask them how to get out of the ward. The ward was holding me against my will and I knew I didn't need to be there. I did know that I needed help in other areas because of my brain injury but I also knew I was not mentally ill. After getting through to the Connecticut Governor's office and sharing my story with one of his representatives, they got a hold of the hospital and set up a jury room filled with my family, doctors, and a representative from the state office. All the while, I was saying that I wanted out of the ward. In order to be taken out of there, I had to have a place to go and my only option was my family and I did not want to burden them with the pain that I was going through.
I ended up in a one-room efficiency apartment. At the time, the building was a major drug trafficking building with rats, roaches, and prostitutes. There was no other place for me to go, no help at all; my family had tried everything to get me help. There were no group homes, no programs, no services offered, nothing. I still did not know how to do the basic functions of life so I would wander the 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 memory of anything that I knew how to do before the accident. I knew at that time this was not who I was.
Things began to improve. My mother got me a weight set, my father bought me a bicycle, and I started volunteering at St. Vincent's Hospital in Bridgeport. At the hospital, I could go into the physical therapy rooms and I could watch what they were doing for rehabilitation. Then I would go back home at night to do the exercises on my own in order to regain my strength and abilities. But I overworked myself physically so as time went on, I found that I was spitting out blood and my body was in terrible pain. A touch hurt. I didn't know better, I didn't realize I was harming myself rather than helping and improving. My mother had to take me many times to the hospital because I couldn't walk or move.
Socially, things were awkward. One day after volunteering I was leaving the hospital and I saw a lady fall to the floor. My instincts were to grab a wheelchair and put her in it and run to the emergency department. Because I had ran to the emergency department, they called me the next day and told me not to return. I was crushed. There was a lot of other pain from being turned away … people always assumed that I was drinking or using drugs because I would slur my words and my equilibrium was off because of my TBI. It became harder and harder to find where I fit in. After remembering little things from watching other people and always trying to look at the good things in life, I started wondering what it would be like to get out of where I was living in Bridgeport. I asked my family for help. They got me a different apartment. Everytime I moved into a different place, I'd think it would help me by being in a better environment. I would temporarily feel like things were changing.
But I had learned a wrong way of thinking to solve my problems. I started drinking and getting into drugs. I thought it would help me cope with the pain by letting me forget all that I went through. Everything I had fought for, I started to lose. I found myself alone even more and getting into trouble, ending up in numerous mental health facilities all over the state because there is no help for TBI survivors. I continued to spiral down, and soon I wound up on the streets and 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, and the judge 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. I will leave it up to your imagination to fill in the blanks. It was hell.
Somehow, I survived and was released in 2003. Once again I needed a place to call home. After nearly 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within two months, they cut through the red tape and I finally received recognition of my TBI. I was accepted into a HUD subsidized housing unit.
Life though continues to be a struggle. 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. So I try my best to help those with TBI get the help we need
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In 2009, I've really found my Voice for TBI. In January, I was approached by the Sarah Jane Brain Project. The Brain Project heard about me and my story, and they have since used that as part of a nationwide campaign to show an example of what can happen when brain injury goes untreated. It's been an honor and priveledge to be a part of their historic and ground breaking work. In the months since then, I've appeared with Patrick and Sarah Jane Donohue in Washingon DC #7 times. I've even gotten to present my story at the US Capitol for the announcement of the PABI List of State Lead Centers. I've also taken part in their nationwide PABI Hero's Tour in Boston, New York, Chicago and Dallas. And On July 13, 2009 I also got to present my personal experience/story at the National Institute on Disability and Rehabilitation Research. The mission of The Sarah Jane Brain Project is to implement a nationwide model system for children and young adults (up to age 25) suffering from all Pediatric Acquired Brain Injuries ________________________________________________________________________________________________________________________________________ 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.
In the 1990s I became a spokesman for Connecticut Brain Injury Associon, advocating for Connecticut's Acquired Brain Injury 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. I have also been written up in the Connecticut Post, Hartford Courant, New Haven Register, The Norwalk Hour Stamford Times, Newspaper, along with numerous others; I have also appeared on several radio interviews. IN July & Nov of 2008,I did a talk show on Citizens Television,Inc. With the U.S. Department of Veterans Affairs New Haven Vet Center Readjustment Counseling Svc. Title of Show. "The Sandbox Chronicles" Geting The Word Out to Our OEF/OIF Veterans Recently as well, I have been asked by the State of CT’s Health Service Program Director for the Department of Corrections to assist with the re-entering for inmates with TBI as a peer support mentor. I can easily relate and help these inmates because I have been there, done that in the same system and process they are going through. I will be informing the inmates about what is available for after care re-entering into society. I have also spoken with several U.S Congressman's about my experience in hope to make a difference. Cable News 12 did an editorial on brain injuries, featuring me. And Cable News 12 featured me as their Hometown Hero segment on my efforts to putting a voice to traumatic brain injury in hopes that it will help present and future people dealing with the challenges and changes of TBI. When you go to my page you will see from my pictures that I have been part of the State of Connecticut Department of Social Services’ (DSS) first attempts to make more awareness on brain injury for minorities and the underserved. DSS made a banner with a variety of cultures including myself and a child (i.e.: shaken baby syndrome) These banner is placed all over the state.
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Who I'd like to meet:
You're invited, Come join us help make the difference in a traumatic brain injury survivors life
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The PABI Heroes event/Angel Awards ceremony will be held in NYC on Tuesday, November 17th
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From 10am-2pm there will be a competition in the studio of Webster Hall (125 E 11th Street NYC 10003). All 11 bands will perform to determine the winner.
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From 6pm-8pm in the Main Ballroom at Webster Hall there will be the Angel Awards Ceremony and the top three bands will perform.
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From 8pm-12am there will be an after party in the Main Ballroom where all bands will get a chance to perform
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From 8pm-10pm there will be a private dinner and dialogue in another room at Webster Hall.
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All my best,
Jen Glaser
Director of Special Events
Sarah Jane Brain Project
339 Fifth Ave. - Suite 405
Office: (212) 576-1180
www.TheBrainProject.orghttp://www.TheBrainProject.org
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Wednesday, August 19, 2009
Response from the White House
I started the year by writing President Barack Obama about the importance of the mission of the Sarah Jane Brain Foundation. Since his inauguration in January, I've sent out several letters to the White House, looking for some kind of response. Well, now I've got it. Here is the letter below. (Click on letter to see it full size) & Print it
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