SUPPORT GROUPS, ORGANIZATIONS, RESEARCH CENTERS, AND RESOURCES IN TRAUMATIC BRAIN INJURY: ORGANIZATIONS AND RESEARCH CENTERS

Brain Injury Association, Inc.

     "The mission … is to promote awareness, understanding and prevention of brain injury through education, advocacy, research grants and community support services that lead toward reduced incidence and improved outcomes of children and adults with brain injuries." Web site has links to state offices; full text information on the Traumatic Brain Injury Act and on TBI for patients and their families, such as The Anatomy of a Brain Injury and Treatment and Rehabilitation; information on defense and veterans head injury programs, the high cost of brain injury, conferences, books, multimedia titles, and BIA publications; and chat rooms, forums, and e-mail.

Brain Injury Information NETwork

     An international "mailing list" of people with TBI.

Brain Injury Information Page

     "… brought to you by the Brain Injury Law Office." Comprehensive site of resources including ADA, Workers Compensation, Social Security, proof of damages, etc.

Brain Injury Society

     "… created to offer a quick response service to all brain injured (whether acquired or traumatic, recovered and recovering) individuals." Based in New York City, the Society provides information in several areas, such as support, events, and goals.

Brain Trauma Foundation

     "Through Guideline education, quality is an improvement and clinical research, BPF is improving the care of TBI patients from the ER and ICU to recovery."

Center for Universal Design (CUD)

     Located at North Carolina State University, the Center for Universal Design collects, updates, publishes, and distributes information and provides technical assistance on housing, home modifications for accessibility, and product evaluations for people with disabilities.

Coma Recovery Association, Inc.

     A not-for-profit organization for coma and brain injury survivors, family members, friends, and professionals, primarily in the New York/Tristate area. Web site includes coma/sensory stimulation documents and information on the latest post coma treatments.

Disabled Sports USA (DS/USA)

     The site includes a schedule of events and information on adapted fitness workshops and seminars; internship openings at DS/USA; links to DS/USA Chapter Web sites; access by program/activity, major events, and equipment of DS/USA chapters and regions; and links to other Web sites related to disabilities, including other disabled sports and recreation sites.

Head Injury Society of New Zealand

     The mission of the Society's Web 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," to "link between industry professionals and local support groups", and "allow people in recovery from head injury to talk to each by e-mail and to be advocates for their own needs." Site includes Recovery Aids, a newsletter, professional articles, public letters, the Traumatic Brain Injury Survival Guide by Dr. Glen Johnson, and a TBI Chat Room.

Job Accommodation Network (JAN)

     Located at West Virginia University, JAN is "not a job placement service, but an international (U.S. and Canada) toll-free consulting service that provides information about job accommodations and the employability of people with disabilities in both English and French. JAN also provides information regarding the American Disabilities Act (ADA)." The site includes free access to online employment and disability resources.

National Center for Injury Prevention and Control (NCIPC)

     Established by the Centers for Disease Control (CDC) in 1992, the NCIPC's mission is to "reduce morbidity, disability, mortality, and costs associated with injuries outside the workplace." The Web site includes information on acute care, rehabilitation, and disabilities' research grants; publications and resources; injury-related web sites; and full text reports, such as Epidemiology of Traumatic Brain Injury in the United States.

National Council on Independent Living (NCIL)

     The NCIL supports the efforts of local Independent Living Center by providing technical assistance, public education, and other services. To locate the ILC nearest you, look in your telephone directory under 'Independent Living Center,' or, send an email to: ncil@tbbs02.net.com.

Ontario Brain Injury Association

    Since 1986, committed to enhancing the quality of life for those living with an acquired brain injury.  Web site includes a calendar of events, support for caregivers, prevention and treatment programs, training opportunities, OBIA's newsletter, etc.

The Perspectives Network, Inc. (TPN)

     "… primary focus is positive communication between persons with brain injury, family members/caregivers/friends of persons with brain injury, those many professionals who treat persons with brain injury and community members in order to create positive changes and enhance public awareness and knowledge of acquired/traumatic brain injury." Web site includes FAQs on brain injury in nine languages; reference material and survivor tools; book store; and TPN Magazine archive.

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

     "RESNA is an interdisciplinary association for the advancement of rehabilitation and assistive technologies (AT)".  Comprehensive Web site includes AT act of 1998, professional development resources, SIG-10 to identify, develop, implement, and test electrical stimulation methods, and RESNA documents and certified AT practitioners and suppliers.

Think First
    Think First, the National Brain and Spinal Cord Injury Prevention Program (formerly titled the National Head and Spinal Cord Injury Prevention Program) is a public education effort targeting this high-risk group about personal vulnerability and risk taking.

Vancouver Island Head Injury Society

Web site includes a calendar of events, information about head injuries, coming events, newsletter, provincial groups, and links to other sites.

Based on Brain Injury Patient Care and Education Manual, by Pinecrest Rehabilitation Hospital; Neuro section of the Trauma Manual, Jackson Memorial Hospital; and Recovering from Head Injury; a Guide for Patients, by Nova University Neuropsychology Service, and edited for PoinTIS by the Louis Calder Memorial Library of the University of Miami School of Medicine and the PoinTIS Advisory Committee, and on Rehabilitation of Persons with Traumatic Brain Injury, NIH Consensus Statement 1998 Oct. 26-28.