The Nation's Oldest and Largest Brain Injury Advocacy Organization
The Brain Injury Association of America was founded by individuals who wanted to improve the quality of life for their family members and patients who had sustained brain injuries. The Association has a long and illustrious history. Here are some of the highlights:
Dr. Martin and Marilyn Price Spivack invite five family members and professionals to their home to discuss the need to form an organization to effect change for individuals with brain injury. By afternoon’s end, the commitment to create the National Head Injury Foundation (NHIF) is made. Articles of Incorporation are filed in the Commonwealth of Massachusetts on September 23. The individuals present at the meeting become NHIF's chartered members and many serve as directors of the organization for one to three years.
The National Institutes of Health report the results of the National Head and Spinal Cord Injury Survey—one of the first sets of statistics compiled related to brain injury. The report is based on research and epidemiological studies conducted in the 1970s. Contact is made with the National Institute on Neurological Disorders and Stroke and the authors of survey articles. The articles and statistical report become the core of the NHIF publications department as permission is granted to reprint and disseminate. A phone line is established in the Spivack's home, providing a larger number of people access to NHIF's information and resources.
NHIF holds its First Anniversary Gala Dinner Dance at the Boston Park Plaza Hotel on October 30. The event celebrates NHIF’s birthday and marks the conclusion of the Tufts New England Medical Center – NHIF International Symposium on Adults and Children with Head Injury. Liberty Mutual Insurance Company becomes NHIF’s first major corporate sponsor by granting the organization $20,000 to open an office in Framingham, MA.
NHIF President Martin L. Spivack and Vice President and Associate Director Marilyn Price Spivack, together with the Executive Committee, name Richard Fiswell first Executive Director of NHIF.
The William Fields Caveness Award was established to honor outstanding brain injury researchers. William Bryan Jennett, M.D., is the first recipient.
NHIF joins the National Committee for Research, a group comprised of more than 50 voluntary and professional organizations dedicated to securing increased federal funding for neurological and communicative disorders.
Congress appropriates $1.5 million in federal funding for the creation of two new Research and Training Centers for brain injury as a direct result of NHIF advocacy efforts.
Well-known film and television star Joan Collins announces she will be a national spokesperson in a series of NHIF public service announcements.
NHIF holds its first annual convention in Framingham, MA.
Marilyn Price Spivack is named Executive Director of NHIF.
Prevention is added to NHIF’s official goals and the organization announces its participation with the National Highway Traffic Safety Administration and the National Coalition to Reduce Car Crash Injuries.
A joint Congressional proclamation declares October National Head Injury Awareness Month.
The Commission on Accreditation of Rehabilitation Facilities (CARF) and NHIF create the first standards of care for acute rehabilitation of persons with brain injury.
NHIF and the Insurance Rehabilitation Study Group (IRSG) co-sponsor “The Challenge of the Traumatically Brain-Injured Person,” a three-day conference to educate third party payors. This unique event provides an overview of state-of-the-art diagnostic techniques used in the treatment and rehabilitation of people with brain injury.
NHIF publishes the first National Directory of Rehabilitation Services, listing 266 facilities and services. In 1981, only 14 head injury rehabilitation facilities existed in the U.S.
NHIF signs cooperative agreements with the Office of Special Education and Rehabilitation Services (OSERS) in the U.S. Department of Education. The agreement is designed to enhance the potential for successful rehabilitation of individuals with brain injury.
NHIF hosts its first seminar for educators, Meeting the Needs of Students after Traumatic Head Injuries: A Challenge for School Systems.
The Social Security Administration issues a landmark ruling to assure that individuals with head injury receive proper evaluation when applying for disability benefits.
Former White House Press Secretary James Brady and his wife, Sarah, become honorary chairpersons of NHIF.
NHIF receives a $75,000 prevention grant from Traffic Safety Now to develop models for use by corporate and government agencies to promote the use of safety belts. This grant is renewed in 1987.
The first annual Walk Through the Clouds event takes place, a 13-mile trek up Colorado's Pike's Peak, to raise awareness of brain injury and funds for NHIF. Martin Krieg pedals from California to Massachusetts, covering 10,000 miles, to promote public awareness and raise funds.
The Federal Interagency Head Injury Task Force is established, largely due to NHIF advocacy efforts. Key government administrators gather to identify the gaps in research, training and service delivery.
NHIF moves to new headquarters in Southborough, Massachusetts.
NHIF receives its first federal grant, a two-year, $300,000 award from the National Institute on Disability and Rehabilitation Research within the U.S. Department of Education for Project TAP (Traumatic Head Injury Awareness Prevention).
Traumatic brain injury and autism are added as categories of disabilities to be served under the Individuals with Disabilities Education Act.
Doug Walker and his golden retriever Tango begin their personal 90-day “Run To Daylight,” a 3,600-mile transcontinental run to raise public awareness of the consequences of head injury and to raise funds for NHIF and its state associations.
A national toll-free Family Help Line is created, considerably expanding NHIF's visibility and capacity to distribute information materials.
The Senate Subcommittee on the Handicapped (now the Senate Subcommittee on Disability Policy) conducts a hearing on the problems of people with head injury, their families and providers of related services. NHIF members submit key testimony at this landmark hearing.
The U.S. Department of Health and Human Services releases its Federal Interagency Head Injury Task Force report calling for an immediate national strategy to address the myriad of problems facing persons with brain injury and their families.
NHIF is awarded a $65,000 grant from the Pew Charitable Trusts to enhance its toll-free Family Help Line.
President George H. W. Bush declares the 1990s the “Decade of the Brain,” fostering a concentrated effort on neuroscience research and needed government attention to treatment and rehabilitation.
Marilyn Price Spivack resigns as President/CEO. George A. Zitnay, Ph.D., is selected as her successor.
President Bush signs the Americans with Disabilities Act, prohibiting discrimination against qualified people with disabilities in employment, public services, transportation, public accommodations, and telecommunications services.
NHIF moves its headquarters to Washington, D.C., to be a more effective advocate at the federal level.
The world premier of Regarding Henry is held in New York City. Title star Harrison Ford heightens brain injury awareness by portraying a lawyer whose entire life changes after sustaining a gunshot wound to the head. The screening of the film is followed by a reception benefitting NHIF.
Without Warning: The James Brady Story is released. The Emmy-winning Home Box Office (HBO) made-for-television movie covers the experiences of former White House Press Secretary James Brady, who sustained a gunshot wound to the head during the assassination an attempt on President Ronald Reagan.
Sen. Edward M. Kennedy introduces the Traumatic Brain Injury Act of 1992. The legislation will be revised and re-introduced in successive years until it is enacted in 1996.
NHIF and its Survivor Council host a political rally in Washington, D.C. More than 1000 people unite to call attention to the issue of brain injury and the needs of those with the disability.
At the urging of NHIF advocates, Congress establishes the Defense and Veterans Head Injury Program (now known as the Defense and Veterans Brain Injury Center-DVBIC), to serve active duty military, their beneficiaries, and veterans with TBI through state-of-the-art clinical care, innovative clinical research initiatives and educational programs.
NHIF is selected to be a national beneficiary of the Driver of the Quarter Century Gala, held at the Charlotte Motor Speedway in Concord, North Carolina. This unforgettable black tie affair marks the beginning of NHIF’s relationship with the NASCAR industry.
The inaugural issue of TBI Challenge! is published, replacing the former NHIF Newsletter.
The HeadSmart® Schools Program is launched with underwriting from The Upjohn Company. The program incorporates brain anatomy and injury prevention education into the regular curriculum of elementary school subjects. Seven schools across the country are selected to participate in the pilot project.
NHIF and its British counterpart Headway jointly sponsor the International Brain Injury Forum: The Quest for Better Outcomes in Oxford, England. Information on brain injury is shared between 650 delegates from 15 countries representing five different continents.
The Paul Spanbock Fund is established as a memorial to the late Paul Spanbock for his work on behalf of people with brain injury and their families. The Fund is primarily used to support legislative efforts.
NHIF is awarded its first cooperative agreement from the Defense and Veterans Head Injury Program. Substantial funding for NHIF’s core programs and services will continue for more than a decade.
The State’s Assembly (now known as the State Affiliate Assembly) was established to foster training and networking among state associations.
NHIF’s “Wear a Helmet” public awareness campaign is launched with 3,000 outdoor billboard placements in 40 states.
The Brain Injury Resource Center™ is pilot tested in 14 locations nationwide.
NHIF launches Brown Bag It!, a nationwide fundraiser with proceeds to benefit the national organization and state associations.
Gregory J. O’Shanick, M.D., is named as NHIF’s first national medical director, a volunteer position that Dr. O’Shanick will hold for more than 15 years.
The 1st Annual State Association Leadership Development Conference (now known as the State Affiliate Leadership Conference) is held in Dearborn, MI. After an 18-month strategic planning process, the members vote to change the organization’s name from the National Head Injury Foundation to the Brain Injury Association.
BIA is instrumental in organizing the First World Congress on Brain Injury in Copenhagen, Denmark. This is the largest gathering ever of its kind, joining delegates from 36 different countries for discussions, lectures and workshops.
BIA is elected to the World Health Organization Collaboration Center on Neurotrauma, a committee actively involved in preparing international guidelines for acute care neurotrauma.
BIA collaborates with the American Academy of Neurology to develop guidelines for the sideline management of sports-related concussions. A pre-conference workshop is held during the 15th Annual National Symposium to introduce the guidelines. Later in the year, BIA joins forces with Leigh Steinberg to circulate the NFL Players Head Concussion Seminars video.
The Traumatic Brain Injury Act of 1996 is signed into law by President Bill Clinton.
The American Academy for the Certification of Brain Injury Specialists (now known as the Academy of Certified Brain Injury Specialists-ACBIS) is established to improve the quality of rehabilitative care for individuals with brain injury.
BIA and eight state associations (IN, KY, MD, MI, NJ, OH, UT and WA) launch the Safe & Sober Campaign with a grant from the National Highway Traffic Safety Administration.
The Cutting Edge Medical Report, focusing on traumatic brain injury, airs on the Discovery channel.
On the recommendation of state association leaders, members vote to change the organization’s governance from individual members to state associations and to discontinue membership dues splits in favor of an affiliation fee to be paid by state associations.
BIA transitions its primary communication tool, TBI Challenge!, to a bimonthly tabloid newspaper and introduces Brain Injury Source as its first professional periodical. The Irving I. and Felicia F. Rubin Family Brain Injury Research Fund is established; BIA grants $250,000 to four
The Irving I. and Felicia F. Rubin Family Brain Injury Research Fund is established; BIA grants $250,000 to four principle investigators to conduct brain injury research.
BIA purchases a headquarters building in Alexandria, VA.
BIA launches www.biausa.org through the generous donation of the Delta Foundation for Rehabilitation.
The Lynn A. Chiaverotti Memorial Fund is established to assist individuals with brain injury and family members in obtaining information and services and to promote prevention.
George A. Zitnay, Ph.D., resigns as BIA President/CEO; Allan I. Bergman is selected as his successor.
The National Institutes of Health hosts the Consensus Development Conference on the Rehabilitation of Persons with Traumatic Brain Injury addressing the epidemiology, consequences, therapeutic interventions and the mechanisms underlying recovery of TBI.
BIA publishes its Standardized Assessment of Concussion (SAC) Manual to educate coaches and players about the dangers of concussion.
BIA’s Board of Directors and staff participate in a multi-day strategic planning meeting that leads to a new mission statement for the organization: To create a better future through brain injury prevention, research, education and advocacy.
The TBI Challenge! newspaper moves to a four-color format.
BIA launches the Special Interest Group on Children and Adolescents with Brain Injury and publishes the Educator’s Manual: What Educators Need to Know About Students with Brain Injury.
BIA enters into a $1 million Partnership for Information and Communication (PIC) Cooperative Agreement with the Federal TBI Program in the Maternal and Child Health Bureau of the Health Resources and Services Administration, U.S. Department of Health and Human Services. The agreement supports expansion of BIA’s services to state affiliates as well as public awareness and advocacy activities.
The Supreme Court issues a landmark decision in the case of Olmstead v. L.C. & E.W in which the Court recognizes services should be provided in the most integrated (rather than least restrictive) environment possible. This decision paves the way for great expansion of home and community-based services for all individuals with disabilities, including individuals with brain injury.
As part of its cooperative agreement with the Federal TBI Program, BIAA contracts with Harris Interactive, Inc. to conduct a nationwide opinion poll to assess the public’s awareness and understanding of brain injury. The poll demonstrates that one in three Americans are not familiar with the term brain injury.
Also under the agreement, BIAA hosts the Resource Facilitation Summit and produces Resource Facilitation: A Consensus of Principles and Practices to Guide Program Development and Implementation. The manual proves to be a useful tool for state affiliates for many years to come.
So You Wanna Be an Advocate, a skill-based training curriculum that includes tips on navigating through the legislative process, how to provide testimony, working with the executive branch, coalition building and media use, is circulated to affiliates.
BIA publishes Where to Turn...Your Guide to Federal Disability Policies & Programs with funding from the Federal TBI Program.
BIA enters into a cooperative agreement with the Health Care Financing Administration (now Centers for Medicare and Medicaid Services) and others to prepare individuals with brain injuries to advocate for the development and implementation of five-year state Olmstead Plans.
The U.S. Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR), awards funding for a 5-year research project on assistive technology and devices for individuals with cognitive impairments.
BIA enters into a cooperative agreement with the TBI Model Systems National Data Center to increase accessibility to and utilization of TBI Model Systems research through abstracts written in lay language that highlight study findings. The abstracts are made available via the Web site.
Congressman James C. Greenwood (R-PA) and Congressmen Bill Pascrell, Jr. (D-NJ) form the Congressional Brain Injury Task Force to increase awareness of brain injury and advocate for greater research and services for those who are injured and their families.
The September 11, 2001, Attack on America substantially reduces funding from BIA’s federal partners and charitable donors, creating the most difficult financial period in BIA’s history. To survive the nearly $1 million revenue loss BIA will experience over the next three years, the Board of Directors make dramatic changes including the sale of the headquarters building, acquisition of a Small Business Administration loan, a 50% reduction in staff and discontinuation of numerous programs and services.
BIA successfully advocates for the Federal TBI Program to receive “line item status” within federal appropriations legislation. This move allows lawmakers to target funding to the state grant program.
BIA’s interactive Brain Injury Resource Center is transferred from a kiosk format to an easy to use and distribute CD-ROM. The multimedia tool provides one-click access to key information and resources in emergency departments, trauma centers, hospitals, rehabilitation programs, attorney’s offices and state association offices.
BIA publishes and disseminates Funding Traumatic Brain Injury Services in collaboration with the National Conference of State Legislatures. This highly informative and resourceful publication lists the types and amounts of funding for public services for individuals with brain injury in each state.
The 21st Annual National Symposium is held in Minneapolis, MN. Widening the Circles: Constituencies, Collaborators and Communities is BIA’s final symposium for more than a decade.
BIA changes its name to Brain Injury Association of America (BIAA) on the advice of communications professionals.
The Centers for Disease Control and Prevention awards BIAA a 3-year cooperative agreement to establish the National Brain Injury Information Center to determine the feasibility of a nationwide, one-call center that automatically links callers to local resources, information, and services. Affiliates in Michigan, Minnesota and Mississippi participate in the investigation and assist in the development of a standardized protocol for handling calls, a customized packet of information, data collection and evaluation activities.
With support from the National Institutes of Health, National Center for Medical Rehabilitation and Research, BIAA releases the report of the Blue Ribbon Panel on Amusement Park Rides in response to a request from U.S. Representatives Edward Markey and Bill Pascrell, Jr. along with 12 additional Members of Congress who expressed concern over the apparent increase in the incidence of roller coaster-related brain injuries and fatalities. The panel finds “the risk is in the rider and not the ride.”
BIAA’s Corporate Advisory Council evaluates the Academy of Certified Brain Injury Specialists certification program. The resulting recommendations have a dramatic impact on the spread of the program in the U.S. and other countries.
As part of its cooperative agreement with the Federal TBI Program, BIAA collaborates with BVK/McDonald and Clear Channel Communications to develop and implement Safe World, an outdoor advertising campaign encouraging helmet use.
Allan I. Bergman resigns as BIAA’s President/CEO. Susan H. Connors serves as Interim President/CEO on a part-time basis until February 2005, when she accepts the appointment full-time.
BIAA launches Living with a Brain Injury, a 3-year campaign to increase public awareness and understanding of the consequences of brain injury. The campaign includes posters, pamphlets, fact sheets and other materials. Major underwriting is provided by the Centers for Disease Control and Prevention, Defense and Veterans Brain Injury Center and Medtronic Foundation.
With support from the Moody Endowment, BIAA brings together the nation’s preeminent researchers and clinicians for Rehabilitation of Traumatic Brain Injury: the State of the Art, a neuroscience conference attracting 250 professionals from across the country.
NASCAR Legend Ernie Irvan, Olympic Gold Medalist Dick Button and Miss Utah Pageant Winner Amy Davis generously volunteer their time to BIAA to spread brain injury awareness and prevention messages.
BIAA hosts the inaugural Brain Injury Business Practices College, a conference to educate owners and senior staff from the nation’s leading rehabilitation providers in leadership, management and business growth topics and to foster industry cooperation and networking.
BIAA revamps its Corporate Sponsors Program, offering rehabilitation and long-term care facilities, attorneys and other professionals 15 ways to demonstrate their leadership and commitment to creating a better future for individuals with brain injury by aligning their organizations with BIAA’s acclaimed programs and services.
Pioneer caregivers and those new to the role gather in Washington, D.C., to share the sometimes funny, often poignant lessons learned in caring for a loved one with brain injury. Sessions showcase key issues and emotional challenges caregivers face. The Use Your Brain Prevention Education Campaign expands to 40 U.S. and international locations with support from the Lynn A. Chiaverotti Memorial Fund and the Defense and Veterans Brain Injury Center. During the year, 8,000 multi‐use sport helmets that look like a human brain are distributed free of charge.
BIAA supports the Oregon Center for Applied Science in its grant from the National Institutes of Health, Institute of Child Health and Human Development to provide advocacy training for parents of children with brain injury who are navigating services within their school system.
BIAA releases Cognitive Rehabilitation: The Evidence, Funding and Case for Advocacy. The highly-acclaimed position paper is a catalyst for a series of front-page stories in the Wall Street Journal and policy change among the nation’s leading health insurance companies.
BIAA partners with ABC News journalist Bob Woodruff and his family to raise awareness of brain injury and to administer the newly created Bob Woodruff Family Fund to assist servicemen and women and their families affected by the signature wounds of the war in Iraq and Afghanistan.
BIAA releases Traumatic Brain Injury in the United States: A Call For Public/Private Cooperation, a position paper that forms the basis of a Congressional Fly‐in during which legislators from key committees and Capitol Hill staff are briefed on TBI.
BIAA partners with Home Box Office (HBO) on the Washington, D.C. screening of its extraordinary documentary, COMA. The film accurately and sensitively portrays the real‐life recovery stories of four young persons who sustain severe traumatic brain injuries.
BIAA joins with the National Institutes of Health, National Institute of Neurological Disorders and Stroke to host the Traumatic Brain Injury Classification Meeting to more accurately describe the distinctions between mild, moderate and severe brain injury,
BIAA’s quarterly publication is re-named THE Challenge! and upgraded to a four‐color magazine format.
BIAA partners with the Wounded Warrior Project and other veterans organizations to advocate for passage of the Dignified Treatment of Wounded Warriors Act as part of the National Defense Authorization Act of 2008, the landmark legislation establishing the Defense Centers of Excellence for TBI and Psychological Health, mandating pre- and post-deployment screening of service members, extending coverage periods for military insurance beneficiaries and authorizing the U.S. Department of Veterans Affairs to contract with civilian providers for hospital care and medical services.
BIAA launches the Brain Injury Business and Professional Council as catalyst for industry collaboration and growth.
BIAA hosts Brain Injury Litigation Strategies 2008 to bring together nearly 100 plaintiff and defense attorneys for TBI training.
The TBI Act is re-authorized and $14.4 million is appropriated to support programs conducted by the Centers for Disease Control and Prevention and the Health Resources and Services Administration.
BIAA’s Board of Directors, staff and representatives from the State Affiliate Assembly’s Strategy and Long Term Planning Committee create “5 Priorities in 5 Years,” a new strategic plan that seeks to (1) increase access to brain injury treatment and care; (2) unify BIAA and state affiliates; (3) embrace technology in all aspects of our work; (4) secure adequate resources to accomplish the mission; and (5) influence awareness and understanding of brain injury.
BIAA establishes the Council of Brain Injury Alumni and launches a pilot Self-Advocate Empowerment Program to provide training and support to individuals with brain injury who wish to lobby their congressional representatives.
BIAA establishes a Research Council and designates The Journal of Head Trauma Rehabilitation as the association’s official scholarly journal. The Council’s goal is to collate recent findings, existing projects, and research study recruitment announcements in a searchable web-based data bank.
BIAA publishes Conceptualizing Brain Injury as a Chronic Disease, a position statement discussing the disease-causative and disease-accelerative consequences of traumatic brain injury.
The National Directory of Brain Injury Services is launched as an online database, searchable by program type, service specialty, age requirements and location.
BIAA is instrumental in establishing the Disability and Rehabilitation Research Coalition (DRRC) to restore and preserve funding for health and function research within the National Institute on Disability and Rehabilitation Research.
President Barack Obama signs the Patient Protection and Affordable Care Act, the most sweeping health care reform in U.S. history. The new law vastly increases the number of insured Americans, invests billions of dollars in research and education and strengthens the government’s capacity to fight fraud and abuse. Because of BIAA’s relentless advocacy, the new law mandates coverage of rehabilitation within the essential benefits package of all individual and small group health insurance policies.
BIAA publishes “Maximizing Rehabilitation Outcomes and Cost Efficiency Following Acquired Brain Injury” as special edition of Brain Injury Source. BIAA updates its logo and requires all chartered state affiliates to adopt the revised logo within the next three years.
BIAA and 13 state affiliates (CA, DE, HI, IA, KS, MI, NY, RI, SC, VA, WA, WI, and WY) launch a new Website using the same design and software to strengthen the nationwide brand.
BIAA begins its 30th Anniversary celebrations with a special edition of THE Challenge! 2011Following the tragedy in Tuscon, Ariz., in which Rep. Gabrielle Giffords was shot during a constituent event, BIAA facilitated a news conference featuring the Congressional Brain Injury Task Force, Rep. Giffords’ staff and BIAA’s volunteer medical director Brent Masel urging the U.S. Department of Health and Human Services to standardize access to care through the rule making process of the Patient Protection and Affordable Care Act. BIAA spokespersons were featured in coverage of the Access to Care press conference and in other stories carried by national outlets such as ABC News, The Washington Post, ProPublica/National Public Radio, USA Today, New York Times and US News & World Report and in local and regional Associated Press stories.
At BIAA’s urging, the U.S. House of Representatives voted to amend the FY12 National Defense Authorization Act to authorize $1 million for the development of treatment guidelines for post-acute brain injury rehabilitation.
The final year of BIAA’s 3-year Brain Injury Awareness Month campaign focusing on sports and concussions helped ensure passage of youth concussion laws in more than 30 states nationwide.