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Caregiver Resources

TBI Caregiver Resources

http://headstrong4dominick.org/advocate.html

Family Caregiver Alliance Assists families of adults with chronic or progressive brain disorders

National Family Caregivers Association

National Resource Center for Respite and Crisis Care Services Directory of service providers

Recovery Awareness Foundation Provides special and individualized support for caregivers to the brain-injured

http://tbihome.org/

http://www.bisociety.org/about.cfm

http://www.head-trauma-resource.com/

http://www.betsysupportpage.com/


Life after brain injury

Getting Started

Essential Skills

Personal Safety Net

Daily Journal

Loss Self

Found Self

Denial

Anger

Memory Survey

Memory Tips

Time Management

Pop Quiz

Life Events Inventory

Wellness Inventory


 

The Bob Woodruff Family Fund

Learn more about the Bob Woodruff Family Fund

Policy Statement/Action Alert: Statement of Brain Injury Association of America calling for public/private cooperation to meet TBI care needs. Click Here

image - brain image - doctor

Facts About Traumatic Brain Injury

Click here for a PDF version of this fact sheet. If you don't have Acrobat Reader, you can download it for free by clicking on the icon below.
 

ktb :: survivor of traumatic brain injury

Visit CaringBridge BIAA has partnered with CaringBridge to help individuals stay connected with family and friends during a health crisis, treatment and recovery.

http://www.highhopes.ws/templates/System/details.asp?id=22761&PID=508465

Research

photo photo

Research is important to understanding more about brain injury. Because of the complexity of brain injury, the need for research grows more and more important as we attempt to unlock the vast mystery of the brain and its functions.

Current Research Studies Needing Participants

Internet users with traumatic brain injury or multiple sclerosis wanted

Researchers at Mount Sinai School of Medicine in New York have developed HealthOrganizer.org, a confidential “one stop” health management site for people with memory difficulties and other thinking problems related to traumatic brain injury or multiple sclerosis.  You can use this no cost website to

  • Maintain your own medical history
  • Track your medications
  • Track your health care providers
  • Keep a list of problems to discuss with your doctors
  • Get reminders of medical appointments, medication refills, etc.
  • Get information about brain injury and multiple sclerosis
  • Get health tips

If you are a person with traumatic brain injury or multiple sclerosis and have regular access to the internet, you may be interested in using this website. It will not cost you anything to use the website. The benefits of the website are currently being evaluated, and all users must agree to allow the researchers to monitor how and when they use the website. All information will be kept strictly confidential.

If you wish to, you can also complete an interview before using the site and after you have used it for a few months; you will be reimbursed for your time.
More information is available at www.HealthOrganizer.org, or you may call 1-866- 622-1375
(GCO #03-0513 project 2 approved through 9/27/2007)

Traumatic Caregiver Stress and the Workplace

I am a Ph.D. candidate at the University of Memphis.  This survey was designed to learn what organizations could do to help working caregivers cope with family-work stress.  This survey was developed by organizational researchers at the University of Memphis and is not affiliated with any participating company.  However, the information obtained in this survey will help the researchers better understand practices that assist working caregivers and help companies manage their environments.  Your identity will remain anonymous, unless you voluntarily give your contact information at the end of the survey.   This study is approved by the Institutional Review Board of the University of Memphis.  If you meet the following three criteria, please help in educating organizations on how to help working caregivers: 1) Caregiver resulting from a severe unexpected, sudden event or shock to an immediate relative;  2) Carereceiver is an immediate relative (e.g., spouse, child, sibling, parent, etc.); and 3) Employed.  The estimated time to complete the survey is 15 minutes.  There are 142 questions.  Please complete the entire survey, you may take a break and resume from the place where you left off.  Your participation is sincerely appreciated.  Please click the following link to begin: https://www.surveymonkey.com/s.asp?u=244193622535

Karen R. Moffitt
Ph.D. Candidate
University of Memphis
Department of Management
202 Fogelman College of Business and Economics
Memphis, TN 38152

Study of a drug that may help individuals in the vegetative or minimally conscious state

Recently, there have been several case reports of minimally conscious individuals regaining consciousness in response to a drug that is already on the market for other purposes. Moss Rehabilitation Research Institute is conducting a study to see how often this type of positive response occurs and how significant the improvement is when it does occur. The study requires two day-long visits to MossRehab in Elkins Park. On one visit the individual will receive the study drug and on the other visit an inactive (placebo) drug. Both visits will be videotaped and the individual will be examined hourly for a drug response. If you are interested in having your family member participate in this study, and are able to travel to MRRI for the research, please contact Robin Myers, the study coordinator, for more details at: 215-663-6526 or email rosburn@einstein.edu. This study is funded by the Pennsylvania Dept. of Health and is approved by the Institutional Review Board of Albert Einstein Healthcare Network.

Professional Organizations

American Speech and Hearing Association (ASHA)
American Psychological Association (APA)
American Occupational Therapy Association (AOTA)
American Physical Therapy Association (APTA)
Neuro-Developmental Treatment Association (NDTA)
Case Management
Certified Disability Management Specialists
Commission on Rehabilitation Counselor Certification
National Rehabilitation Association
North American Brain Injury Society (NABIS)
North American Neuro-Ophthalmology Society (NANOS)
Neuro-Optometric Rehabilitation Association (NORA)

Rehabilitation

Home-Based Cognitive Rehabilitation (online stimulation programs)
NovaVision (vision restoration technology)

Research

NCRRN (forum for cognitive rehabilitation research)
Research and Training Center (community integration of individuals with TBI)

Resources

After Brain Injury: Tools for Living (guide for caregivers and survivors)
Air Ambulance Specialists
All Experts (Advice from medical experts in many different fields)
Assessment Scales
American Medical Association
Balinger TBI Clubhouse
Brain Injury.com
Brain Injury Recovery Network (for families of brain injury survivors)
Brain Injury Resource Center
Brain Injury Society (Serving brain injury survivors and their families)
Brain Injury Network (St. Jude Hospital, California)
Brain Resource (Alberta, Canada)
Cerebraal (Netherlands Brain Injury Site)
Cranico (Italy)
Coastline Community College (ABI Program)
Epilepsy.com
Headway (UK)
Human Brain (Franklin Institute)
Kentucky Dept. of Mental Health (Brain Injury)
Lightning Injury Research Program
Medicine Net's Pharmacy (Alphabetized listing of drug information)
Missouri Head Injury Advisory Council
National Resource Center for Traumatic Brain Injury
Nurses World (Resource directory for nurses)
Oliver Zangwill Centre for Neuropsychological Rehabilitation (UK)
Oregon Brain Injury Resource Network
Perspectives Network
Quest Imaging Medical Associates
Race 2 Safety
TBI Technical Assistance Center
TBI-Help
TBI Model Systems
TBI Recovery Center
TBI Social Network
Texas Dept. of Health (TBI Info)
Traumatic Brain Injury
Traumatic Brain Injury Technical Assistance Center
TonyCare (Long-term care coordination for TBI - Canada)
Wheelchair Getaways (Wheelchair and scooter accessible van rentals)
UK Acquired Brain Injury Forum
UNAFTC (France)

Survivors

Betsy`s Support Page for TBI
Cafe Plus
Claudia Osborn (TBI author)
Life with TBI (TBI survivor)
Successfully Surviving a Brain Injury (TBI survivor and Caregiver)

This site is dedicated to Alexis, Arionna and Carey from the extreme loss and pain their family had to go through due to lack of imformation in hopes that it can help save other families who will be going through a TBI


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