Useful Internet Links and Discussion Groups for

Persons with Brain Injuries

(Excerpted from: Users Guide to Disability Related Resources on the World Wide Web, M.F.Martelli, E.L.Lilgedahl and K.Nicholson)

A Page Directed to You Who Are Waiting While Someone is in a Coma

http://www.waiting.com/

A webpage devoted to individuals with a family member in a coma. Personal stories from Traumatic Brain Injury patients and families are provided. Information on Intracranial Pressure, Coma, The Rancho Los Amigos Scale, Neurosurgery, Brain Anatomy, Brain Functions and Pathology, and Glossary. Resources include frequently asked questions and answers, advocacy, financial, legal issues, and rehabilitation. E-mail messages will be answered.

Traumatic Brain Injury Survival Guide

http://www.tbiguide.com/sleepdisorders.html

Traumatic Brain Injury Survival Guide contains information on head injuries and problems with sleep disorders, organization, memory, headaches, fatigue, depression, word-finding, seizures, recovery stages, and more.

Traumatic Brain Injury Chatroom

http://tbichat.org

Traumatic Brain Injury chatroom for patients and caregivers.

Links - TBI/ ABI

http://mars.ark.com/~busstop/links.htm

Traumatic Brain Injury chat room. Includes Caregiver's, patient's and chronic pain E-mail lists.

The Perspectives Network

http://www.tbi.org/

The Perspectives Network offers information on enhancing rehabilitation through educating individuals with brain injuries, families, and professionals treating brain injury patients. Frequently asked questions about brain injury are provided in several languages. Additional links are given to order materials for educating others as well as articles and personal experiences shared by traumatic brain injury patients.

National Library of Medicine; Current Bibliographies in Medicine

http://www.nlm.nih.gov/pubs/cbm/tbi.html

Current bibliographies in medicine: Rehabilitation of personas with Traumatic Brain Injuries, over 2500 citations.

Traumatic Brain Injury Update

http://weber.u.washington.edu/~rehab/bi/index.html

University of Washington brain injury services, other clinics, and related web sites.

NIH Consensus Statement: Rehabilitation of Persons with Traumatic Brain Injury

http://odp.od.nih.gov/consensus/cons/109/109_statement.htm

Nat. Inst. of Health Consensus Statement derived from the independent report of the consensus panel based on: (1) 1998 presentations by investigators working in this area during a 2-day public session; (2) questions and statements from conference attendees during open discussion periods; and (3) closed deliberations by the panel.

The ABI/TBI Information Project

http://sasquatch.com/tbi/

Information on brain injury including subscriptions for e-mail list.

This site is maintained from Hawaii by Chris and Debbie Wilson

http://www.canddwilson.com/tbi/tbiepil.htm

Traumatic brain injury, acquired brain injury and epilepsy home page with links to related sites.

BRAIN INJURY ASSOCIATION OF VIRGINIA HOMEPAGE

http://angelfire.com/jazz/biav

Information and assistance to people with brain injuries, their families, and service providers.

EEG Spectrum Weblinks

http://www.eegspectrum.com/html/wwwlinks.htm#TBI

Extensive links to a wide variety of mental health and neurological problems provided by EEG Spectrum.

Ohio Valley Center

http://205.182.14.25/

The Ohio State University Department of Physical Medicine and Rehabilitation home page. Brain injury prevention and rehabilitation.

Brain Injury Association of North Carolina Homepage

http://www.bianc.org/

Homepage of statewide organization dedicated to providing education, outreach, prevention, advocacy and support services to all persons affected by brain injury, their families, as well as the general public.

Brain Injury Association - Community Associations

http://tnt.vianet.on.ca/community/brain/caac.htm

Contacts for community brain injury associations in Ontario, Canada.

Brain Injury: Kennedy Krieger Homepage

http://www.kennedykrieger.org/training/brain.htm

Training Center in Brain Injury Research.

Ohio Brain Injury Association Homepage

http://www.ohiovalley.org/ohiahome.html

Links to newsletter, support group, Ohio brain injury statistics and related information.

Traumatic Brain Injury Research Database

http://biggulp.callamer.com/~cns/rehab/refs.html

List of references for research articles in the field of traumatic brain injury.

Traumatic Brain Injury Model Systems

http://www.tbims.org/

Home page of the National Institute on Disability and Rehabilitation Research (NIDRR) Traumatic Brain Injury (TBI) Model Systems of Care. The TBI Model Systems (TBIMS) are involved in a prospective, longitudinal multi-center effort to examine the course of recovery and outcomes following TBI. Each of the 17 centers provides a coordinated system of emergency care, acute neurotrauma management, comprehensive inpatient rehabilitation and long-term interdisciplinary follow-up services. Research focuses primarily on: 1) developing and demonstrating a model system of care for persons with TBI, stressing continuity and comprehensiveness of care; and 2) maintaining a standardized national database for innovative

analyses of TBI treatment and outcomes.

Waiting Resources

http://www.waiting.com/waitingres.html#anchor2273046

Links for traumatic brain injury sites, acquired brain injury, epilepsy, government agencies, medical pages, and many others. Sites provided by the Brain Injury law Office.

NIH Consensus Statements: 109. Rehabilitation of Persons With Traumatic Brain Injury

http://odp.od.nih.gov/consensus/cons/109/109_statement.htm

National Institutes of Health 1998 consensus statement providing information regarding effective rehabilitation for persons who have suffered a traumatic brain injury (TBI) and presents the conclusions and recommendations of the consensus panel regarding these issues.

Rehabilitation of Persons with Traumatic Brain Injury

http://www.nlm.nih.gov/pubs/cbm/tbi.html

Links: brain injury, head injury, TBI, ABI, Traumatic Brain Injury for survivors and caregivers.

Brain Center

http://www.braincenter.org/

Information and resources on acquired brain injury provided by the Brain Injury Association of Kentucky.

Coma and Anoxic Brain Injury: Links for Information

http://www.paxconsulting.com/coma.html

Links for coma and anoxic brain injury, general medicine, alternative medicine plus related associations and hotlines.

Traumatic Brain Injury Resource Guide

http://www.callamer.com/~cns/

Various resources including glossary of brain injury and related terms, brain injury articles, assessment scales, a brain map and description of functions of parts of the brain, neurolinks, conferences, pharmacology, rehabilitation services, and other information.

Inside View Traumatic Brain Injury Newsletter

http://www.callamer.com/~cns/cns/insidem.html

Quarterly newspaper dedicated to traumatic brain injury issues published by the Centre for Neuro Skills.

The Brain Injury Recovery Program

http://www.brainrecov.com/

A multidisciplinary program of neurorehabilitation and community re-integration. Primarily a commercial site with little information.

The BRAIN BOOK System

http://www.brainbook.com/

Compensatory skills training program for persons with brain injury. Commercial site.

Head Injury Society of New Zealand Home Page

http://www.head-injury.org.nz/

Mission of this site is to provide basic information for people who are newly introduced to brain injury by the injury or illness of a friend or relative. The site is also a link between industry professionals and local support groups plus allowing people in recovery from head injury to talk to each other by e-mail and to be advocates for their own needs. Links to other health and medicine as well as other science sites. Recommended.

NeuroScience Center

http://www.neuroscience.cnter.com/

Collection of sites and inks containing commercially and freely provided information (articles, software offers, events calendar, facilities for referrals, etc.) that is updated on regular schedules. Recommended.

Brain Injury Association of Tennessee Homepage

http://home.earthlink.net/~biat/ourweb.htm

Facts about the brain, who sustains brain injuries, behavioral characteristics of brain injury, safety and prevention, glossary of terms, support group meetings, upcoming events and information, plus links to other great pages. Quite good.

International Center for Clubhouse Development

http://www.iccd.org/

Organization to build and coordinate a strong international network of clubhouse model programs. Clubhouses are founded on the realization that recovery from serious mental illness must involve the whole person in a vital culturally sensitive community. A clubhouse community offers respect, hope, mutuality and unlimited opportunity to access the same worlds of friendship, housing, education and employment as the rest of society.

American Academy of Neurology

http://www.aan.com/cgi-bin/whatsnewlink.pl?loc=%2fpublic%2fnewsreleases\

Information about neurology and the academy for members of the general public as well as members of the American Academy of Neurology. Not a lot for non-members.

Traumatic Brain Injury (TBI) Support Groups

http://www.neuroskills.com/rehab/bia.html

Listing of national and state brain injury support groups in the United States and Canada, including a TBI research database.

Working Effectively With Employees Who Have Sustained a Brain Injury

http://janweb.icdi.wvu.edu/kinder/pages/brain_injury.html

Provides information on ADA and issues related to hiring an individual with a traumatic brain injury, selecting accommodations for employees, and training tips.

The Institute for Cognitive Prosthetics

http://www.brain-rehab.com/index.htm

Applies computer technology to assist persons with brain injuries in everyday activities

American Brain Tumor Association

http://www.abta.org

Webpage

http://www.links2go.com/topic/Brain Injuries

A plethora of links dealing with all types of topics on Brain Injuries Brain Train: Articles for

Survivors and Families

http://www.brain-train.com/articles/articles.htm

A series of articles in various relevant topics prepared for presentation to various support groups that are designed for family members and survivors rather than professionals.

Brain Train Cognitive Retraining Software

http://www.brain-train.com/Brain%20Train/brain.htm

Cognitive Retraining Software, OTHER SOFTWARE Freeware/Shareware ARTICLES for designed for family members and survivors.

Traumatic Brain Injury: Cognitive and Communication Disorders

http://www.nih.gov/nidcd/health/pubs_vsl/tbrain.htm

The National Institute on Deafness and Other Communication Disorders (NIDCD) website, with

general emphasis on Traumatic Brain Injury and more specific focus on speech, language and communicatwion impairments that result.

National Center for Neurogenic Communication Disorders

http://cnet.shs.arizona.edu

American Speech-Language-Hearing Association

http:// www.asha.org

Brain Injury List Server and Discussion Groups

A discussion list is a special Internet address that echoes email messages to a list of subscribers. Any standard email system with Internet access may be used to participate in the list. Here are a few useful ones.

CARE-TBI

For info, email: jlyon@driveninc.com

For caregivers of persons with TBI (Traumatic Brain Injury)

TBI-LIVING

For info, email: cdlyon@driveninc.com

For persons with TBI

TBI-LIVING

You can mail a request for an "info" file to the server address, listserv@home.ease.lsoft.com. Put this single line in the mail message: info TBI-LIVING

Promotes more adaptive living with Traumatic Brain Injury (TBI)

Stroke

http://www.gireland.demon.co.uk/stroke3.html

For info, email: wolfhound@bigfoot.com

Mailing list for stroke survivors, friends, family carers etc

BRAINTMR (Brain Tumor)

You can mail a request for an "info" file to the server address, listserv@mitvma.mit.edu. Put this single line in the mail message: info BRAINTMR.

Brain Tumor Research/Support.