Q&A With President and CEO of the Brain Injury Association of America

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Headshot photo of Susan Connors

Susan Connors, President and Chief Executive Officer of the Brain Injury Association of America (BIAA)/Photo courtesy of BIAA, used with permission.

 

From Injury to Diagnosis, to Hope for the Future, CEO of Association Sheds Light on Those in the Brain Injury Community

To help raise awareness of the issues facing survivors and caregivers during National Brain Injury Awareness Month in March, Avanir conducted a Q&A with Susan Connors, President and Chief Executive Officer of the Brain Injury Awareness Association (BIAA). BIAA is the nation’s oldest and largest brain injury advocacy organization, founded by individuals who wanted to improve the quality of life for family members and people who had sustained brain injuries.

 

    1. How does BIAA help patients and caregivers of brain injuries? What types of resources are available?

The Brain Injury Association of America is the country’s oldest and largest nationwide brain injury advocacy organization. Our mission is to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury. We are dedicated to increasing access to quality health care and raising awareness and understanding of brain injury.

We have a toll-free helpline, BIAA’s National Brain Injury Information Center, at 1-800-444-6443 that assists individuals and families who experience the life changing, sometimes devastating effects of brain injury. We work in collaboration with our chartered state affiliates to offer National Brain Injury Information Center services in all 50 states and the District of Columbia.

We advocate on behalf of individuals with brain injury on a state and national level, including on Capitol Hill for Brain Injury Awareness Day every March. Avanir sponsors BIAA’s weekly Policy Corner emails, which provide up-to-date information about governmental happenings that impact brain injury.

Our Academy of Certified Brain Injury Specialists program provides training and certification to thousands of professionals working in various areas in the brain injury field, from nurses to speech language pathologists. BIAA provides educational webinars and conferences year-round to meet their continuing education needs. Avanir is one of several sponsors of these programs, which in 2022 have included webinars on self-advocacy as well as pseudobulbar affect in Traumatic Brain Injury (TBI) patients.

BIAA’s Brain Injury Research Fund awards dissertation grants and seed funding to researchers seeking to find cures for brain injury.

BIAA also provides extensive communications resources, including web pages, social media channels, email outreach, physical materials, and more.

 

    2. Can you share a little more information about the goals of the #MoreThanMyBrainInjury Campaign and what you hope everyone can learn from it?

#MoreThanMyBrainInjury is a nationwide media campaign, now in its second year, that centers on the stories of brain injury survivors to increase understanding, reduce stigma, improve care, and showcase the diversity of experience in this community. We are inviting anyone with a stake in brain injury – from survivors to caregivers to professionals – to participate in the campaign on a personal level through storytelling, social media posts, custom apparel, media outreach, and legislative advocacy. As part of our efforts, we have developed an array of collateral available that illustrates brain injury, such as concussion, overdose, and abuse.

We were delighted to see that the campaign resonated with so many people last year, and we hope that the momentum of #MoreThanMyBrainInjury will continue. There are so many vibrant, resilient individuals with brain injuries, and this injury can be misunderstood and often overlooked. We are bringing people with brain injuries to the forefront so that they can share their stories in whatever way feels most comfortable and empowering to them.

More information can be found at biausa.org/morethanmybraininjury.

 

    3. What are the biggest issues that brain injury patients have faced during the pandemic?

The pandemic has had far-reaching impacts on the brain injury community. Many individuals require rehabilitation to regain losses due to their injuries. These services are vital and time-sensitive, with studies showing that when rehabilitation is delayed, denied, or discontinued prematurely, the opportunity to regain lost skills is diminished. During the pandemic, rehabilitation facilities have been hit hard by personnel shortages due to budget cutbacks, vaccine hesitancy, the Great Resignation, illness, loss of daycare, and more.

COVID restrictions have also forced a switch to tele-rehabilitation. BIAA has advocated for insurance coverage and funding, but the solution is not permanent. Beyond rehabilitation, COVID has reduced availability and capacity of community-based services, creating obstacles for those in need. Individuals with brain injury are also at a higher risk for developing severe illness if they contract COVID-19.

Finally, the emotional strain of stay-at-home orders and social isolation have caused an increase in cases of domestic violence1, which is one of the leading causes of brain injury.

 

    4. What tips would you give a newly diagnosed TBI patient or the family caregiver of a TBI patient?

Brain injury often comes about quickly and can cause major and sometimes permanent changes in a person’s life. It is a complex and often a misunderstood injury that for some becomes a chronic disease and illness. Brain injury outcomes vary greatly from person to person. The journey from injury to diagnosis, treatment, and recovery may take time and be unpredictable.2

There is hope. There are resources. There is community – for survivors, for caregivers, for family members. At least 3.6 million Americans sustain a brain injury each year, looking at data for TBI and stroke.3,4 You are not alone. Navigating something as complicated as brain injury can be overwhelming. BIAA is dedicated to helping individuals and their families sort through their options, understand their rights, connect with others in support groups, and read the latest research.

Finally, BIAA is proud to empower those in the brain injury community, while broadening empathy and awareness for people across the country. And, to remember that each and every individual who experiences a critical event is #MoreThanMyBrainInjury.

 

Bio for Susan Connors:

Susan Connors is President and Chief Executive Officer of the Brain Injury Association of America (BIAA). She was executive director of the National Association of State Head Injury Administrators from 2001 to 2005 and BIAA’s national director of state affairs from 1995 to 2001. Ms. Connors has served in advisory capacities and on expert panels for several federal agencies, universities, and nonprofit organizations and has authored numerous publications, position statements and articles on the topic of brain injury and its related effects. She holds a bachelor’s degree in public communication from George Mason University.

 

Sources

  1. Clare E. B. Cannon, Regardt Ferreira, Frederick Buttell, and Jennifer First. "COVID-19, Intimate Partner Violence, and Communication Ecologies" American behavioral scientist 65, no. 7 (2021): 992-1013. Accessed at: https://journals.sagepub.com/doi/full/10.1177/0002764221992826
  2. Brain Injury Awareness. Brain Injury Association of America. Accessed at: https://www.biausa.org/public-affairs/public-awareness/brain-injury-awareness
  3. Centers for Disease Control and Prevention (2021). Surveillance Report of Traumatic Brain Injury-related Hospitalizations and Deaths by Age Group, Sex, and Mechanism of Injury—United States, 2016 and 2017. Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. Accessed at: https://www.cdc.gov/traumaticbraininjury/pdf/TBI-surveillance-report-2016-2017-508.pdf
  4. Stroke Facts. Centers for Disease Control and Prevention. Accessed at: https://www.cdc.gov/stroke/facts.htm

 

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