April 24, 2014

TBI Important Links

  • Brain injury research is being conducted at the National Institutes of Health.  Go to www.nih.gov for specific studies being funded.
  • The National Brain Injury Association has developed special interests groups to evaluate brain injury research, standards of care, and outcomes.
  • The Center for Neuroscience and Regenerative Medicine (CNRM) is a federal medical research program that is a collaboration between the National Institutes of Health, Uniformed Services University, Walter Reed Army Medical Center, and National Naval Medical Center. Congress established CNRM to bring together the expertise of physicians and scientists at these institutions in the National Capital area to develop innovative approaches to brain injury diagnosis and recovery. CNRM research programs address the full spectrum of traumatic brain injury (TBI), with special focus on militarily relevant forms of TBI such as blast, penetrating, and repeat brain trauma events, including the impact of anxiety and the concurrent development of PTSD with TBI.
  • The National Institute On Aging is also funding clinical research in Alzheimer’s and related cognitive/behavioral research in behavioral medicine and cognitive aging.
  •  Review current clinical trials .
  • The National Institute of Neurological Disorders and Stroke will provide additional information on current initiatives and plans for brain and nervous system research.
  • The AAA Foundation for Traffic Safety researches traffic safety problems and implements solutions for these problems through educational materials. Some of this research includes drunk driving, headlight glare, distractions while driving, as well as senior driving.  While there is no direct information on brain injury, there is information about the prevention of traffic accidents.
  • The American Academy of Pediatrics aims to attain optimal physical, mental and social health and well-being for all infants, children, adolescents and young adults. In the advocacy section of this website, there are many links to injury prevention, including car safety.  Some sections are member-only.
  • The American Academy of Physical Medicine and Rehabilitation is the national medical society representing physicians who are specialists in the field of physical medicine and rehabilitation, called physiatrists. Physiatrists restore function and often work with brain injury survivors. This website explains the role of a physiatrist and includes a physiatrist locator.
  • The American Brain Tumor Association seeks to eliminate brain tumors through research while meeting the needs of brain tumor patients and their families. This a thorough website about brain tumors with information about recovery, pediatric brain tumors, facts, statistics and support services.
  • This is the homepage of the Americans with Disabilities Act , which guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services and telecommunications. This website explains the ADA and offers a list of publications about the ADA.
  • The American Medical Association is a professional organization for physicians. The AMA speaks out on issues important to patient and national health. To find information on brain injury, type ?brain injury? in the “Search Our Site” box.
  • According to the American Heart Association , heart disease is the #1 killer in America and stroke is #3. Through this website, learn about the warning signs of heart disease and stroke, other diseases and conditions such as high cholesterol, CPR, and tips for a healthy lifestyle, including diet and nutrition.
  • This is the website of the American Occupational Therapy Association . An occupational therapist, or OT, works with people experiencing various types of health problems including stroke and brain injury. The consumer section of this site explains the job of an occupational therapist, the ways in which an OT can help with regaining independence, and an OT locator.
  • Bungalow Software provides software specifically designed for people with aphasia.
    The National Aphasia Association is a nonprofit association that promotes education, research, rehabilitation and support services to assist people with aphasia and their families.
  • This is the website of the American Physical Therapy Assoc iation. A Physical Therapist focuses on regaining strength and movement after an injury. This website describes the goals of a PT, the many types of exercises and treatments that PTs use and a PT locator.  Sections of this website are members only.
  • The website of the American Speech-Language-Hearing Association (ASHA) works to “ensure that all people with speech, language, and hearing disorders have access to quality services to help them communicate more effectively.? While this website is geared toward professionals, it has sections on advocacy, outreach, balance, a health plan report card, internet resources for hearing and assistive listerning devices, self-help groups for speech and swallowing disorders and a professional referral service.
  • This is the home page for the Brain Injury Ring . Started in 1996, the ring consists of the homepages of Brain Injury Survivors, caregivers, friends, family and TBI Resources.
  • The Brain Trauma Foundation works nationally with EMS, physicians, trauma centers and hospitals to create standardized care for traumatic brain injury survivors. The guidelines for prehospital assessment, management of TBI in hospitals and trauma centers, surgical treatment of TBI and medical management of pediatric TBI are all located on this website, as well as news releases about current research.
  • This website is for the Brain Aneurysm Foundation , developed from a Boston-basedl need for information and support for brain aneurysm patients, their advocates and family, and the medical community. This site includes information about aneurysms and sections on support and recovery, strategies for memory loss, survivor stories, a message board as well as information on physical and emotional challenges, depression, possible deficits, treatment options and risks.
  • This is the online location of the Bicycle Helmet Safety Institute , which is the helmet advocacy program of the Washington Area Bicyclist Association. This site includes all types of helmet information including fitting a helmet, buying guide, facts and statistics on bike and helmet safety as well as safety programs.
  • The Brain Injury Association of Ohio (BIAOH) works with professionals, survivors, families and caregivers to address the problems faced by the individuals with brain injury. Included in this website is information on prevention, statistics and definitions about brain injury, and links to local and national brain injury websites.
  • The Brain Injury Association of America strives to ?create a better future through brain injury prevention, research, education, and advocacy.? Their website is one of the more detailed and comprehensive sites for information and support for brain injury survivors and their advocates. It includes a detailed explanation of brain injury, treatment and rehabilitation, fact sheets, guides for professionals and survivors, legal aspects and prevention.
  • This website gives Bicycling Information to cyclists and pedestrians to reduce the number of accidents and injuries that occur every year.
  • B Independent provides products geared toward simplifying the lives of survivors of brain injuries, their families and caregivers..
  • This is the website of the Washington State Booster Seat Coalition . This site details the reasons why car seats are necessary and the possible consequences of not using them, including. There is also a list of recalls.
  • This website educates both patients and physicians on Brain Aneurysms . The site includes photographs, diagnostic tools and aneurysm information, survivor stories, articles on current research and treatments, resources, links and a physician finder.
  • Brain Injury Chat  is a peer support web site, run by volunteers, where people who are affected by brain injuries can chat with other people in similar situations.
  • Brain Injury Survivors encourages survivors to take responsibility for their lives and healing based on structure, spirituality and a social network, developed by brain injury survivors.
  • Brain Train is a software company, geared toward professionals in a rehabilitation setting, that focuses on retraining cognitive abilities in people with brain injury or other cognitive deficits.
  • The National Brain Tumor Foundation provides information on treatment and resources, opportunities for patient, family, caregiver and professional support. The patient information section of this site has information on tumor diagnosis and treatment, an on-line newsletter, links to support groups and message boards and a section on advocacy.
  • The Family Caregiver Alliance provides support and information to caregivers and family members who are providing long-term care for a loved one at home. This website covers aspects of being a caregiver and includes several information and fact sheets to help support the caregiver.
  • The Centers for Disease Control and Prevention  includes government information on all health issues. Under the disabilities section of this site there is a section on Traumatic Brain Injury. Included in this section are fact sheets covering statistics and prevention, number of injuries per state per year, causes, outcomes, research, prevention and risk groups.
  • The Coma Recovery Association, Inc. aims to help patients and families with the process of brian injury recovery. The documents section of this site offers information on treatment options during the coma stage, information on brain injury, caregiver support and survivor stories.
  • Dana Alliance for Brain Initiatives was formed to educate others on the importance of brain research.
  • The Office of Disability Employment Policy (ODEP), a federal agency in the Department of Labor, works to increase employment opportunities for all people with disabilities. This website has information for both employers and employees, with fact sheets and FAQ’s for both groups.
  • The Association for Driver Rehabilitation Specialists discusses the issues of driver rehabilitation after an injury or illness that has affected driving. While this site is mostly for professionals, it has information on unsafe driving practice, as well as a driving specialist locator.
  • EEG Spectrum uses Neurofeedback training to improve brain and body function. Find out information about the benefits of Neurofeedback with specifics on brain injury and stroke under the Therapeutic Applications section. There is also a categorized links section and a provider locator.
  • The U.S. Equal Employment Opportunity Commission  prohibits discrimination in the workplace. This site has the text of the actual laws prohibiting discrimination, as well as specific information regarding disabilities.
  • Sponsored by DaimlerChrysler, Fit For A Kid gives tips and videos for correctly installing a car seat and a car seat inspection locator. It also has links for recalled car seats.
  • Health Touch  is a source for information about medications, vitamins, herbs and natural supplements. It also has a directory of health information and an extensive list of health-related links.
  • Stroke is one of the top ten causes of death in children. The Children’s Hemiplegia and Stroke Association works to offer support and resources for the families of children who have a brain injury or disorder, as well as information about pediatric brain injury.
  • Located in New Jersey, Humpty Dumpty uses professional safety clowns to educate children on how to prevent brain injuries through different live programs in schools and libraries.
  • The Hydrocephalus Association offers support, information and advocacy for families and professionals dealing with hydrocephalus. Hydrocephalus is a condition that occurs when there is an increased amount of cerebrospinal fluid (CSF) within cavities inside the brain. On this site, access information and resources as well as a list of services and a physician locator.
  • The Institutes for the Achievement of Human Potential  have designed programs to help parents encourage their child’s educational brain development. They have a special program for children who have suffered a brain injury, based on the book What To Do About Your Brain Injured Child? by Glenn Doman.
  • The Job Accommodation Network is a service that works with employers and potential employees to help create a work environment that is accessible to workers with disabilities. This site offers information on different types of disabilities and suggestions for accommodations.
  • Kidshealth.org has three sections: one for parents, one for kids and one for teens, with articles and illustrations geared toward each group. This site is monitored by doctors for accuracy and focused on children’s health from birth through adolescence. It includes information such as general health, nutrition, growth, and medical issues. Using the search option, information on brain injury can be found for each section.
  • Kidsource contains information on healthcare and education issues for children from birth through high school. It contains product recall information broken down by age group and sections on parenting, recreation and education.
  • This site is selling a product entitled After Brain Injury: Tools for Living , a four part program for caregivers and survivors on living after a brain injury. The first is a guide for caregivers, the second is a survivor reference guide, the third is a time management and organizational system and the fourth is for personal coaching sessions done via telephone.
  • The Lok-it-up campaign is working to have all firearms stored in secure, locked locations, where children and teenagers cannot access them. This website discusses the risk of accessible firearms as well as ways to safely store them.
  • The Whole Brain Atlas has pictures of actual neuroimaging scans that compares a normal, uninjured brain with brains of people who have suffered a stroke, brain injury or other neurological disorders.
  • The National Rehabilitation Information Center contains a collection of published books, journal articles and audiovisuals on several health and rehabilitation topics, including brain injury. There is also a list of brain injury programs.
  • The Neurology Channel was developed by physicians and its content is monitored to make sure that the information is current and accurate. This website has detailed information and videos on many different types of neurological issues and conditions, including, for a fee, post a question to be answered by a neurologist, as well as a free patient-to-patient forum.
  • Similiar to the Neurology Channel above, the Neurology Channel Stroke  is specific to stroke.
  • Similiar to the Neurology Channel above, the TBI Channel is specific to TBI.
  • Neuropsychology Central discusses the uses of a neuropsychological evaluation. This assessment covers cognitive and behavioral functions through a set of standardized tests and procedures. There is specific information on brain injury and the importance of these tests for the survivor.
  • Neurosurgery On-Call  contains information about neurosurgery and guidelines for treatment for both patients and care professionals. Neurosurgery is the treatment of disorders or injuries to the brain, spinal cord or peripheral nerves.
  • The Department of Neurological Surgery at the University of Pittsburgh focuses on brain, spine, neck, cancer and movement disorders. There is an extensive section on gamma knife surgery.
  • This is the website of the National Dissemination Center for Children with Disabilities . The most useful part of this site is the links to state resources, which include links to Governors and U.S. Senators, agencies serving children and youth with disabilities, disability organizations, parent groups and information projects.
  • The National Family Caregivers Association offers free membership to caregivers in the United States. Membership gives discounts on available publications, free telephone support and a free newsletter.
  • The  National Highway Traffic Safety Administration website includes safety information for drivers and passengers. Information on safe cars, child seat inspection stations, child seat safety, crash statistics and crash test information, automobile safety issues and adaptive equipment for people with disabilities, vehicle and safety equipment recalls and injury prevention is available.
  • The Children Outreach page of the National Highway Traffic Safety Administration, includes information on this site about bike safety, school bus safety, car safety, the EMS, basic first aid and a section for educators.
  • National Institute on Neurological Disorders and Stroke has a listing of many disorders and information. This site gives good background information, as well as current press releases and publications.
  • Run by the National Library of Medicine and the National Institute of Health , this address is a direct link to the head and brain injury page. Included on this site is information on current news, a general explanation of head injury, anatomy and diagnosis, prevention, rehabilitation, current research, treatment, definitions, current laws and organizations. There is also a section for pediatrics and adolescents.
  • Ohio Valley Center for Brain Injury Prevention and Rehabilitation conducts research, provides education and programming, and works to improve the quality of life for people who have been affected by TBI. Topics include substance abuse, agitation, coordination of services, outcomes, employment, life quality, internet support and current articles.
  • PatientTravel.org provides free transportation to patients and their families who are receiving medical treatment at distant locations, based on financial need. This website offers information on how to receive transportation and also how to donate to this program.
  • The Public Broadcasting Service has a search section that gives you access to TV programs about the brain and brain injury.
  • The Pediatric Stroke Network is a support and information source for families of infants, children and young adults who have prenatal stroke, childhood stroke, infant stroke, perinatal stroke, neonatal stroke or in utero stroke. This resource contains news, current research, types of after-effects of stroke and information on types of rehabilitation with sections on supplies, therapy and financial concerns. There is also a support section for parents and teens.
  • The National Safe Kids Campaign focuses on taking simple safety precautions to avoide unintentional injuries to children. This site includes safety topics such as water, children with special needs, baby and toddler safety, car and bicycle safety, firearms, fire, household and school safety. There is also a section on child safety laws for each state and product recall information.
  • The Snell Memorial Foundation focuses on research, education, testing and development of helmet safety standards. This site includes information about proper fit, best helmets and safety articles.
  • The Social Security Administration website helps people to determine their eligibility for disability benefits using the Benefit Eligibility Screening Tool (BEST), apply for benefits on-line and update information if already receiving information. These services are all located in the Disability and SSI section of the website. This website offers information in SSI and SSDI and access to the Ticket to Hire program, a national service used to link employers with qualified workers who have a disability.
  • The National Stroke Association  is committed to reducing the incidence and impact of stroke. Included in this website is information on stroke including types, symptoms, prevention, risk factors, effects, recovery and rehabilitation, treatments and survivor and caregiver on-line videos and information.
  • The American Stroke Association , which is run by the American Heart Association, focuses on the prevention of stroke and offers information on warning signs and risk factors. There is also information on treatment, advocacy, professional stroke resources, local stroke support groups and current news.
  • The Brain Attack Coalition is a group of medical professionals working on brain injury prevention and treatment. While the site is directed at professionals, it offers links to information on different stroke scales, guidelines to determine type of stroke, range and severity, best treatment, hospital and physician orders, a list of care maps used by different facilities and a patient information section which.
  • Part of the Strong Health site, this is a questionnaire the hospital uses to compare people who receive medical treatment for TBI to those who do not. Upon completion of the survey, the respondent will receive a list of links to traumatic brain injury websites.
  • Synapshots is run by the Charlotte Institute of Rehabilitation and the Ohio Valley Center for Brain Injury Prevention and Rehabilitation. This website is still under construction, but will show pictures of the brain, as well as discuss substance abuse and traumatic brain injury.
  • The Perspectives Network, Inc. focuses on improving communication with people affected by brain injury, professionals who treat brain injury and the community to increase awareness. Visitors can request a survivor identification card, view large printe FAQs, articles by caregivers and survivors, reference materials and speak to others on a message board.
  • The TBI Guide is run by Dr. Glen Johnson, Clinical Neurologist and director of the Neuro Recovery Head Injury Program.  You can download his book,  The Traumatic Brain Injury Survival Guide , written to prepare the survivor and his family for the road to recovery in clear, easy to understand language. It covers many topics including memory, headaches, organization, sleep, anger, dealing with doctors and different types of professionals that may be involved in treatment.
  • TBI Help  is run by the Jamaica Hospital Medical Center in New York. It is a helpdesk for caregivers and survivors of brain injury and provides information on treatment, prevention and coping.
  • TBI Home has multiple message boards where survivors and caregivers can post messages and questions, TBI chat rooms, member pages and a section on brain injury information.
  • The Center on Outcome Measurement in Brain Injury (COMBI) describes several different outcome measurements for brain injuries, which are commonly used in the treatment of brain injury. Primarily for professionals, it includes a survey to help determine which scales are the most effective.
  • TBI Resources is a website by a brain injury survivor devoted to providing information, tools and resources for brain injury survivors, families, friends and caregivers. There is also a section on managing daily life including assistive technology.
  • Developed by neurologists,  The Brain Matters site covers several different disorders of the brain, from basic information about these disorders to information about what a neurologist does.
  • The Virtual Hospital is a database of health information for all types of health concerns. To look up a specific concern, such as TBI, type it into the search box. Several different links and informational articles will appear.
  • WebMD is an up-to-date website providing health information, healthcare management tools and support for a range of health concerns. To find information specific to brain injury, type brain injury into the search box. Results include studies, current research, links to other websites,and current TBI facts.
  • Well Spouse is designed for the spouse of the ill or injured, to offer support and encouragement. The organization asks that you become a member, and most benefits are accessed through membership.  You can access support groups and e-mail members listed under specific ailments.
  • The World Health Organization was established by the United Nations in 1948 to attain the highest possible level of health, physical, mental and social well-being for all people worldwide.  To find specific information on brain injury, type ?brain injury? in the search box.
  • Your Surgery  is an expanding database of operative procedures that has information about what to expect before, during and after typical surgeries. It is geared toward patients and medical professionals. The topics for head surgery include blood transfusions, anesthesia, craniotomy and shunt insertion. The anatomy of the operative site is listed for free. To receive more information including: alternative surgical solutions, pathology of the illness, possible complications, symptoms associated with the condition, post operative care, diagnosis, innovations in surgical technique, and a concise description of each surgery a fee is required. Also included in this site is a pre-operative questionnaire that can be filled out and taken to the hospital with you.

For more information on other resource options: