TBI Survivor Honor Roll
Dear Honorees,
Thank you everyone mentioned here! I am privileged to know quite a few of you personally, and I know how much work you put in to your efforts, often despite great hardships for you in your own life. You have worked hard and deserve all the thanks we have to offer, and more. Your work means a great deal. Thank you for all you have done for our brain injury survivor community.
(We are actively seeking information about anything undertaken by a survivor of tbi independent of service provider involvement, and which occurred earlier or in addition to what we have delineated. Please note also our criteria for inclusion on the timeline. If you have information, please advise tbi_survivor [at] prodigy.net
(Please replace the [at] in the above email address with @.)
1996. Thesis "Traumatic Brain Injury Rehabilitation and Compensation: Survivors' Perspectives" was completed by tbi survivor Sue Hultberg. This year-long study addressed topics from the perspective of brain injury survivors. It was based on input from survivors. This study focused on survivors as consumers of services as opposed to the traditional study in which they are experimental and/or research subjects. The two hundred and twelve page study included a satisfaction survey. The participants were asked to rate various sources of support. Survivors were asked what kind of support they received and what sources of support were the most effective. They were asked to rate various forms of service delivery. They were also asked to share their own compensatory strategies and rehabilitative techniques they had used to help them deal with their brain injuries.
http://braininjurysurvivors.org
June 1996. The first Brainwaves Newsletter Issue, a survivor newsletter, was published in California, USA by a local group in Santa Rosa, California.
June 1998. Brain Injury Network, a survivor incorporated and legal nonprofit organization, began operation with its survivor Board of Directors in spite of disbelief from local service providers. Those initial brain injury survivor board members were Sue Hultberg, Troy Opp, Mark Warner, Sandy Warner (no relation to Mark), and others.
1998. John Hatten, a tbi survivor working at a hospital in Santa Clara, California, put together the updated Traumatic Brain Injury Resource Directory (or TBIRD) which listed resources in the Northern California region. There is one to this day although it was taken over by providers.
1999. TBI survivor BJ of "BJ's Closet" set up an early survivor web site with links and commentary.
1999. Deborah Palmer, an ABI (not TBI, but another form of brain injury) survivor in Northern California, who started as the editor of a newsletter for the brain injury community, incorporated the Brain Injury Connection (BIC).
http://braininjuryconnection.org
2000. Very early use of the term "tbi survivor" was seen on the Internet, and we owe it to Jeff Sebell, tbi survivor from Massachusetts, and author of "Wake up, Jeff!!! From Coma to Life".
2000. A very early "head injury survivor" web site was published by tbi survivor Dan Windheim.
June 2000. Renee Turner, tbi survivor from New Zealand, set up the TBI-Survivor (for survivors) and the TBI-Together (for survivors and caregivers) on Yahoo groups. (This one is still active:)
http://health.groups.yahoo.com/group/TBI-Together/
2000. Claudia Osborn, MD, and tbi survivor, published her book "It's Over My Head", a book read and applauded by thousands of fellow tbi survivors.
2000. TBI survivor Sue Hultberg coined the term "SABI" because the survivor brain injury community includes many people with other kind of acquired brain injury besides TBI, such as ABI from stroke, brain tumor, brain illness, near electrocution, near drowning, hypoxic and anoxic injury, etc. The term also refers to survivor advocates regarding brain injury.
2002. Tommy "Tottenwood" Weiss, tbi survivor from Washington state, started and operated the Survivor of TBI (or SoTBI) Yahoo group.
2002. The Perspectives Network was started by a tbi survivor from Melbourne, Florida. Among other activities she pushed for survivor identification cards that would help survivors explain their situation. The motto of the lady's organization is "Survive with Pride".
2002. Ken Aitken, tbi survivor (1995) in Australia started writing his survivor blog, Brain Injury Survivor Network. Motto: Victim >Survivor>Over Achiever. He was the first on the Internet talking about his evolution in those terms.
http://braininjurysurvivornetwork.blogspot.com/
September 2002. Anita Capron, tbi survivor from northern California, created the ABINews2U yahoo group. Anita works steadily providing the brain injury community with interesting links to research studies, and other valuable web sites.
http://health.groups.yahoo.com/group/ABINews2U/
2004. Melanie, tbi survivor in California, started an early TBI Survivors social community on My Space. (You may need to log in on My Space to see this one.)
http://groups.myspace.com/TBISurvivors
2005. Rick Franklin, tbi survivor, and additional survivors developed a documentary about brain injury, entitled Brain Injury Dialogues.
http://www.braininjurydialogues.org/
July 4, 2006. The Brain Injury Network published its Independence Day message for brain injury survivors.
http://braininjurynetwork.org/thesurvivorsviewpoint/independence.html
November 2006. The Survivor Acquired Brain Injury (SABI) online advocacy and policy forum commenced on Yahoo. This was the first advocacy and policy forum created strictly for the brain injury survivor community. It was created by a tbi survivor, and acts in conjunction with the Brain Injury Network all survivor advocacy organization.
http://health.groups.yahoo.com/group/survivoracquiredbraininjury/
2006. A tbi survivor initiated the Brain Injury Directory, a multidisciplinary resource directory. The directory promotes survivor self-advocacy and collective advocacy.
http://braininjurydirectory.net
2007. Jamie Fairles, tbi survivor in London, Ontario, Canada, created the Supporting A. B. I. group on Facebook. (Note: It is connected to the BIA in that region of Canada.) (You will need to login at Facebook most likely, to see this one.)
http://www.facebook.com/home.php?#!/group.php?gid=2549346291ref=ts
2008. Brain Injury Network called for the implementation of national standards for post secondary college programs for adults with brain injuries who attempt to go back to school.
http://braininjurynetwork.org/nationalstandards.html
2008. The Brain Injury Network survivor organization commenced distribution of advocacy and public policy announcements on behalf of the tbi and larger abi survivor community. The dedicated survivor board members working on the policies have included Lee Spitzer, Sharon Taggart, Mettie Vining, Sharon Whorton, Sue Hultberg, and others. Also involved have been Clodagh Beneditto and Rosa Ratu. Also involved have been members of the Survivor Advocate Regarding Brain Injury "Sabi" Advocacy forums.
http://braininjurynetwork.org/publicpolicy.html
2009. Brain Injury Network called for the medical community to develop and utilize a Post Traumatic Brain Injury (PTBIS) brain injury classification.
http://braininjurynetwork.org/thesurvivorsviewpoint/posttbisyndrome.html
http://braininjurynetwork.org/publicpolicy/posttbisyndromediag.html
2012. More individuals with brain injuries who are leaders in the brain injury survivor community are highlighted in the book Brain Injury Advocates.