Did you know that an estimated 1.7 million children and adults in the U.S. sustain a traumatic brain injury each year?  As the oldest and largest brain injury advocacy organization nationwide, the Brain Injury Association of America (BIAA)speaks up for the rights of individuals who are affected by brain injury and offers hope, help and healing for those living with brain injury, their caretakers and healthcare professionals.

Treatment options for brain injury have been limited in the past, but FDA-regulated research is underway to evaluate the use of a child’s own cord blood stem cells to treat traumatic brain injuries. CBR is a proud supporter of BIAA’s mission and values, and we recently spoke with CEO Susan Connors to learn more about BIAA, its services and how newborn stem cells may someday provide new treatment options.

CBR:  Tell us about BIAA’s history.

SC:  BIAA began in 1980 in Massachusetts as a group of parents and clinicians who came together when a local teenager experienced a severe traumatic brain injury (TBI) as a result of a horrible car crash. BIAA’s main purpose was to help caregivers navigate their way through brain injury recovery by providing information, support and access to expert clinicians.

CBR:  How has BIAA’s mission grown?

SC:  BIAA’s mission quickly expanded to include awareness and advocacy; namely, by pursuing a legislative agenda calling for greater federal investment in epidemiology (data collection) and groundbreaking research. Today, BIAA is pushing for new and better treatments for patients and a deeper understanding of the nature of brain injuries.  Long term, research advocacy is more closely focused on a cure.

For a long time, we thought rehabilitation and accommodations were the best approach to treating TBI. While hugely important, we now know there are steps you can take early on to reduce the severity of the injury and prevent secondary problems.  A lot of the recent research has been to stop cell death after the injury and encourage new cell development.

CBR:  As the voice for brain injury, what specific support do you offer to people living with brain injuries, their families and/or caretakers?

SC:  Our priority is to improve access to quality healthcare, which we know will improve the everyday lives of people with brain injuries and their caregivers. We want to help policymakers to understand the causes and consequences of the injuries and the need for research, treatment, services and support across the age span and the lifespan of the patients.

BIAA and its nationwide network of state affiliates work with the government at national, state and local levels on a range of legislation and regulations. At the community level, we help individuals with brain injury and their families become strong self-advocates.

CBR:  What are some of BIAA’s latest accomplishments and announcements?

SC:  BIAA was closely involved in the Patient Protection and Affordable Care Act and successfully lobbied Congress to include rehabilitation as one of the essential benefits in individual and small-group health plans.

On an ongoing basis we advocate for cognitive accessibility so that instructions are written directly and simply. We’ve been working with the federal government to require a coverage facts label – like a nutrition label on food – which must outline what an insurance policy does and does not cover. We know that the label can’t explain everything, but we want the explanations to be readable and understandable for someone who has a cognitive disability.

CBR: What do you think cord blood stem cells can do to alleviate damage to the brain?

SC:  Cord blood stem cells hold promise for a cure for patients with neurological problems, including TBI. The big issue is informing parents about the benefits of banking their baby’s cord blood.

CBR:  What do you mean by a cure for brain injury? How do you cure an injury?

SC:  Thirty years ago we thought of brain injury as an event or an outcome. It’s not.  It’s the start of a disease process, and the consequences initiate or accelerate a range of physical, cognitive and psychological diseases and conditions.  By conceptualizing brain injury as a disease, we can conceptualize a cure.

You can learn more about BIAA at:  http://www.biausa.org/.