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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy

Brain Injury Directory

The Brain Injury Directory provides cross-disciplinary abi and tbi brain injury resources and information on wide-ranging topics. There are links to numerous international and USA national resources. There are portals to USA federal and state government, nonprofit and provider clearinghouses, databases and websites. There are sections designed to appeal to brain injury survivors, family caregivers and service providers. This directory is intended to pool together many resource options that address the extensive and multi-dimensional issues that people with brain injuries are confronting in their day-to-day lives. We invite any person with any level of brain injury, whether it was classified by medical authorities as mild, moderate, severe, undetermined or other, to utilize this directory. We know that no matter what the "level" of brain injury it has been a terrible ordeal and that there are many challenges. A human being who happened to survive a serious traumatic brain injury (TBI), a form of acquired brain injury (ABI), long ago edits this directory.  She has been surviving acquired brain injury for many years now, along with a gigantic world-wide community of underserved, scantily represented, stigmatized and discounted survivor individuals. There are literally millions of individuals living with acquired brain injury from causes such as tbi, stroke, tumor, aneurysm, anoxia/hypoxia and brain illnesses such as Meningitis and Encephalitis. However, the editor is here to demonstrate that some brain injury survivors are able to regain their capacity to think, function, contribute and serve.

The Brain Injury Directory does not seek out nor does it sell patient private and confidential medical information to service providers.  “Service providers” may refer to business, educational, legal, medical, rehabilitative, research, and other industry agencies, associations, businesses, enterprises, institutions, and organizations. Service providers may also include professional and non-professional individual practitioners who work in a field related to brain injury. The Brain Injury Directory does not “harvest” patient data and sell it for profit. The information and resources on the website are provided solely for educational purposes. The is not engaged in rendering professional services and is not a substitute for any type of professional advice, including financial, legal, medical or psychiatric advice. Always seek the advice of an appropriate professional and never disregard professional advice or delay is seeking it because of the content on this website. See also under "Terms of Use".

This directory is a work in progress and more topics are planned. So far there are over 900 topics and 5,000 links. Type a phrase in the search box above to compile a list of links from many subsections of the directory or follow a link on a particular topic below. Under many of the main topic pages there are additional sub-categories.  See also the “categories map” at the bottom of this page on the right to view an outline format of the categories in the directory. 

May the information available on this website be of assistance to you. Sincerely, Sue Hultberg, TBI Survivor and ABI Survivor (1985), M.A., J.D.

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Susan C. Hultberg, president of the Brain Injury Network, an international and U.S. national advocacy organization for people who have sustained brain injuries, is pleased to announce the publication of her new book entitled Brain Injury Advocates: The Emergence of the People with Acquired Brain Injury Human and Civil Rights Movement. The book is currently available for purchase at the following link:
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This nonprofit agency is a USA national and international survivor of abi or tbi advocacy organization operated for and by survivors. We are interested in promoting the human rights and civil rights of persons who have sustained acquired brain injuries. We have developed and are disseminating a public policy agenda which reflects our concerns for our community.
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SOURCE: Brain Injury Network

Jan 11, 2011 11:11 ET

Brain Injury Network Announces the Human Rights Issues and Concerns of People With Acquired Brain Injury From Traumatic Brain Injury (TBI), Brain Cancer, Brain Illness, Stroke, and Other Forms of ABI

People With Acquired Brain Injuries Consider Their Human Rights and Their Basic Human Safety Net to Be Their Most Vital Issues

SANTA ROSA, CA--(Marketwire - January 11, 2011) - The Brain Injury Network, an all acquired brain injury survivor organization (founded 1998), has announced human rights issues important to the ABI survivor community. BIN is a USA national and international organization promoting ABI survivor collective advocacy, citizen action and human rights. People with ABI at BIN have developed a collective consciousness and have articulated many issues that need public declaration. BIN is disseminating a consumer driven policy platform. We request that other policy advocates emphasize our recommendations and work for laws, standards and procedures that will protect vulnerable people who have ABI.

"The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have," said Susan C. Hultberg, President and Executive Director of the Brain Injury Network and brain injury survivor. "Our membership has stated repeatedly that our main concern is our basic human rights and the basic human safety net. This means basic shelter, food, and medical care. It is our position that the basic human safety net for a person with incapacitating cognitive and/or physical disabilities after brain injury is even more important than community reintegrative retraining programming."
BIN is also concerned about safety, privacy, and confidentiality concerns for people with ABI, especially individuals with brain injury who participate on Internet social communities. Web administrators of social communities for individuals with brain injuries should set privacy defaults to maximum and not allow public archiving of participants' posts in search engines.

Additionally, medical, legal, government and other venues should use consistent definitions of ABI and TBI. Medical authorities should create a Post-Traumatic Brain Injury Syndrome (PTBIS) traumatic brain injury medical classification. PTBIS is an umbrella term being circulated by BIN to medical authorities in the hopes that they will utilize this new medical classification.

Other policy statements and guidelines of the Brain Injury Network may be viewed on its website at
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This web site concerns itself with the worldwide traumatic brain injury (TBI) survivor community, a robost and vibrant community of individuals who have sustained some kind of traumatic brain injury. The site honors TBI brain injury survivor leaders. "Many people have been members of our community a long time and have worked hard on behalf of our TBI survivor community. Please see our TBI Survivor Honor Roll, which we intend to expand over time." There is a discussion of the early history of the "TBI Survivor Movement", sometimes referred to as the "Brain Injury or Acquired Brain Injury Survivor Movement". There are also discussions of the causes and forms of TBI. TBI is a subset of ABI (acquired brain injury). To help survivors understand the difference between traumatic brain injury and other types of brain injury, information about other kinds of brain injury is also included. Additionally, criteria which helps tbi survivors evaluate online brain injury or tbi social communities is also included. The author of the material is Susan C. Hultberg, J.D. (1978), tbi survivor (1985), and M.A. (1996).
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SABI means "Survivor of Acquired Brain Injury" and also "Survivor Advocate regarding Brain Injury". This term was coined by abi survivor (and tbi survivor) Sue Hultberg in the year 2000. The term is used as a rallying term for survivor advocates who are associated with the Brain Injury Network, an international and USA national brain injury survivor advocacy non-profit organization that operates from Santa Rosa, California. The Brain Injury Network hosts several SABI advocacy forums online. SABI advocates are interested in the creation and dissemination of survivor public policy. SABI advocates think in terms of a survivor-driven agenda.
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This is an international survivors-only advocacy, chat and peer support forum board. The owner/moderator is a survivor. SABI is affiliated with the Brain Injury Network, a Section 501(c) (3) nonprofit organization operated by and for survivors of brain injury. Note: only people with brain injuries themselves are eligible to join this forum.
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