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Some Group History
In The Beginning
The Pittsburgh Area Brain Injury Alliance started in 1981 as a support group for parents of people who survived head trauma. In 1982, our organization became the Pittsburgh/Regional Chapter of the National Head Injury Foundation (NHIF). It was founded to serve the Western Pennsylvania Region. The head injury peer support movement grew as medical technology and treatment improved and more people survived Traumatic Brain Injury.
At that time, national statistics estimated that approximately 16,000 persons were living with the consequences of Head Trauma in the Western Pennsylvania region. It was believed that about 700 persons were acquiring head injury each year in the Western Pennsylvania area.
The Pittsburgh/Regional Chapter of the National Head Injury Foundation was dedicated to creating a responsive network focused on the specific needs of the people who survived head injuries in the region.
The founders actively focused their energy on two main projects at that time. The first was to maintain and expand a reference library containing information on head injuries and available services at the main branch of the Carnegie Library in Pittsburgh. This was long before the World Wide Web and the Internet facilitated easy storage and free access and transfer of information. The second was to aid in the development of support groups to help families with the emotional adjustments and decisions they faced.
It was believed and stated that because of the Pittsburgh/Regional NHIF's affiliation with the National Head Injury Foundation, the regional support groups could provide information about rehabilitation options all over the United States of America.
The goals of this group were to support the goals of the National Head Injury Foundation by working to:
Stimulate public and professional awareness of the problem of head injury ~ the silent epidemic.
Identify causes and means of prevention.
Define the nature of disability after head injuries.
Set forth special needs in head injury rehabilitation.
Cite need for special legislation to fund programs and services for people who sustain head injuries.
Provide a central clearinghouse for information and resources for the head injured and their families.
Develop national and state resource directories.
Distribute a regional newsletter.
Maintain a library of information on head injury.
Develop a support group network for the head injured and their families.
Assist in organizing local support groups throughout Western Pennsylvania.
Institute a "hotline" for people in need.
Establish specialized head injury rehabilitation programs.
Encourage existing programs and develop new programs stressing cognitive retraining, behavior modification, and vocational rehabilitation leading to independent living.
Designing living facilities, either transitional or permanent, in association with rehabilitation programs.
Membership was offered at the following dues rates:
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No person who could not pay was denied membership. All memberships and gifts were tax deductible. All Pittsburgh/Regional NHIF memberships included membership in the national organization of NHIF.
Checks were made payable to:
Pittsburgh Regional Chapter - NHIF, 1816 President Drive, Glenshaw, PA 15116
Founding Board of Directors
Jean Bush, President
Sandra K. Smith, Vice President and Treasurer
Kathleen M. Bachman, Secretary
Thomas J. Bachman
Sarah M. Banda
Gerald W. Bush
Beth B. O'Brien
William S. Smith
Marland J. Weiss
Dorothy Weiss
Violetta M. Antelman, MSSA, Social Service, Trauma Unit, Allegheny General Hospital
Cecilia T. Johnson, ACSW, Director, Social Service, Harmarville Rehabilitation Center
Patricia L. Price, M.Ed., CRC, Coordinator, Head Trauma Project, Vocational Rehabilitation Center of Allegheny County
Joyce A. Schlag, ACSW, Director, Social Service, D.T. Watson Rehabilitation Hospital for Children
Jan Titonis, MPH, Coordinator, Head Injury Program, The Rehabilitation Institute of Pittsburgh
Members
In the Fall of 1983, the Pittsburgh/Regional Chapter, NHIF, boasted of 100 paid members. This was reported in the Fall 1983, "New Day" newsletter of The Pittsburgh Regional Chapter, National Head Injury Foundation Inc.
It was also reported that dues would be "going up a bit starting January 1984." The new membership dues were listed as $15 for individuals, $20 for families, $25 for professionals, and $100 for institutions.
Eastern Pennsylvania Chapter NHIF
May 1983 ~ Eastern Pennsylvania Chapter NHIF received its charter from the National Head Injury Foundation. Frank Martin, Administrator of the Oxford Hospital in Philadelphia and father of a TBI survivor was president. Each county in Eastern Pennsylvania had representatives on the board of directors and there were on-going support groups in that area of the state.
The Eastern Pennsylvania Chapter's largest priorities included service, fundraising, and public awareness.
The Pittsburgh/Regional Chapter NHIF welcomed the Eastern Chapter and noted in the "New Day" newsletter that they were looking forward to the day when together they could become a strong advocacy group for head injured in Pennsylvania. It would take a few years for that dream to become reality.
During the next few years, the Pittsburgh/Regional NHIF continued to sponsor support groups and aid people who were operating head injury support groups.
The following area meetings were listed:
Pittsburgh/Regional
South Hills (Pittsburgh) ~ Coordinated by Beth O'brien
Westmoreland County ~ Coordinated by Andrea Bogdan (Andrea Williams)
State College/Altoona ~ Coordinated by Ronnie Pasko and Kathy Tweed
Beaver County ~ Coordinated by Marland Weiss
Erie Area ~ Coordinated by Jim Mikula
Community Relations (1983)
Mary F. Rambo, Director of Physical Therapy and Dr. P. Meloti, Director of Physical Medicine and Rehabilitation invited Beth O"Brien and Jean Bush to give a presentation to Mercy Hospital employees. They visited with Mercy Hospital's Department of Rehabilitation staff on July 22, 1983. About 25 People representing all disciplines attended this presentation. It was stated that they were very receptive to the work the chapter was doing.
Five people from Erie representing families and professionals met July 27, 1983 to discuss affiliating with the Pittsburgh/Regional Chapter, NHIF. The Erie support group was an active one and was interested in expanding.
A presentation/discussion was planned for Tuesday, September 6, at Saint Francis Hospital. The topic was "Financial Planning for Head Injury". Pittsburgh/Regional board members, Tom Bachman of Massachusetts Financial Services, and Bill Smith, attorney were the guest speakers.
Harmarville Rehabilitation's, Dr. Graham Radcliff was scheduled to present "Neuropsychological Evaluation, what it is, when you need it, why you need it, etc." at Duquesne University 's College Hall.
In 1985, Beth O'Brien was elected president of the Pittsburgh/Regional Chapter NHIF. This was at about the same time that John Pistorius started attending meetings of the Pittsburgh group. He was referred by long time member Joyce Schlag of D.T. Watson Rehabilitation hospital. John quickly became involved in the steering committee and offered his perspective on matters pertaining to the needs of the people that this group was serving.
Forming the First Statewide NHIF Affiliate
In 1989, the board members of the Pittsburgh Chapter of the National Head Injury Foundation (NHIF) decided to merge with another non profit NHIF group from the Philadelphia, Pennsylvania Area. The newly formed organization was named the Keystone State Head Injury Foundation (KSHIF).
The mission of the Keystone State Head Injury Foundation was
(will be posted here soon)
An executive director was hired. A newsletter, brochure and other promotional items were created. People from all over the state of Pennsylvania, including the Pittsburgh area, were nominated and elected to the board of directors.
The Spring 1990 KSHIF 'Keynotes' newsletter, listed the following people as directors of the organization:
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Events Scheduled For 1990
June 8-9, 1990, Head Injury Conference, Vista International Hotel, Pittsburgh, PA, ~Continuum of Care in Head Injury Rehab: Pulling the Strings Together.
July 4, 1990, Walk-Through -The-Clouds, Pikes Peak, Colorado.
July 30, 1990, KSHIF Golf Outing, Concordsville, PA.
August 17, 1990, American Trauma Society, Golf Outing, Hershey Country Club.
October 20, 1990, KSHIF Dinner Dance, Philadelphia, PA, Hershey Hotel.
November 13-17, 1990, NHIF Symposium, New Orleans, Louisiana.
November 30 - December 1, 1990, KSHIF Conference and Annual Meeting, Seven Springs, PA.
Reorganizing The Pittsburgh NHIF
In April, 1989, soon after the creation of the Keystone State Head Injury Foundation, former Pittsburgh/Regional NHIF board member, and Hotline Chairperson, Kathy Bachman, recruited people for the Pittsburgh Help Line. With the help of another long time member, Andrea Bogdan, Kathy trained the recruits to answer calls and direct callers to appropriate information, resources and treatment.
After reestablishing the Hotline, Ms. Bachman organized the Greater Pittsburgh Chapter of the Keystone Head Injury Foundation. Kathy enlisted the help of Andrea Bogdan, John Pistorius, John Cassase, Lori Ferris, Jim Denbow and others. Although this resurrection was not formed into a non profit corporation, it maintained a board of directors and an advisory board. We can all thank Kathy Bachman and Andrea Bogdan for their tireless efforts in reorganizing the Pittsburgh NHIF. In spite of the difficulties they faced, they persevered. They brought the interested parties together in a lasting effort to provide brain injury support to the people of Pittsburgh and Southwestern Pennsylvania. Their inspiration continues to live on today.
The Greater Pittsburgh Chapter of the Keystone Head Injury Foundation was created to maintain the support group as an ongoing entity. The organizers believed that the need for peer support, TBI advocacy and brain trauma information would not go away. They believed that an organized effort was needed to provide the structure for continuing interaction between the many people whose lives were impacted by traumatic brain injury, service providers and the KSHIF and National Head Injury Foundation.
The people who had survived brain injuries, their families and friends, as well as people who worked within the many medical and rehabilitation fields participated in the effort to keep the Greater Pittsburgh Area Head Injury Support Group intact.
Since 1989, John Pistorius, John Cassase, John Kimes, F. Bruce Marion and Ed Crinnion have served as president of this volunteer organization. Many other people have given their time and resources to the brain injury support movement of Pittsburgh, Western Pennsylvania and the United States. Some of these people were family members, friends, and persons who survived brain trauma. In some cases, people who work for rehabilitation service companies and medical service corporations have volunteered time. Numerous people have contributed to the effort of maintaining a strong brain trauma support group in Pittsburgh. The people who have unselfishly devoted a portion of their lives to this effort are to be applauded. They embody the meaning of support. The members of The Pittsburgh Area Brain Injury Alliance offer our heartfelt thanks to the pioneers of this organization.
This brain injury support group organization has undergone many changes through the span of its existence. Yet it has never stopped! This effort has withstood the test of time.
At first the use of the "brain" word was shunned.
People were concerned about the negative connotations that were associated with the phrases "brain injury", "brain damage" and "brain trauma." However, as our understanding of the brain improves and with researchers unlocking previous mysteries of the brain, a new definition of traumatic brain injury is emerging. The many layers of negative perceptions are being peeled away. Prejudice still abounds, yet it is being overcome incrementally by education, advocacy and prevention efforts. For some people, "brain injury," "head injury," "brain trauma", "brain damage" and "traumatic brain injury" are simply titles that point to the beginning of their quest to become the best they have ever been in their entire lives.
People get together in citizen focus groups to share experiences and swap information and strategies. This is the power of peer support. So often, brain injury organizations have neglected the very core purpose of their existence. Without people who sustain and survive brain injuries, there would be no need for brain injury support alliances, foundations and associations. The survivors would be loved ones who are left behind after the trauma victim did not survive the brain trauma. These people would grieve and go on with their lives, leaving a void where we now have a need for organized brain injury support.
The Pittsburgh Area Brain Injury Alliance by any name has always been about providing support to families and the people who sustain and survive traumatic brain injury. At times this mission was accomplished with resolve. Other times, well, not everyone found what they were looking for. The organization has always been run by humans, and as such has flawed on occasion. We apologize. Maintaining continuity in an all volunteer organization can be challenging.
Now we are moving into the new millennium using the latest tools to provide the highest level of brain injury support possible for our support group members and all others that are interested in traumatic brain injury issues, support and current information. Tell us what you want!
Every living human being has a stake in the brain injury issue. Brain trauma can happen to anyone, anywhere, anytime. While some people are at greater risk than others, no one is immune. Get involved. The brain injury that you help to prevent may be your own! - John Pistorius
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-2003 John Pistorius. All rights reserved. Revised: August 30, 2005 08:25 PM .Persons interested in making in kind donations can click here.