When Kelly Lang joined a national collaborative to develop Communicating About Brain Injury, she brought more than two decades of lived experience to the table. The initiative—created by the American Congress of Rehabilitative Medicine (ACRM), the Brain Injury Association of America (BIAA), the North American Brain Injury Society (NABIS), and other partners—aims to establish consistent, inclusive, and patient-centered language for discussing brain injury across healthcare, research, and community settings.

Lang, who co-leads the Survivor Advisory Council for the BIAA, participated in shaping the document to ensure that it could be understood and applied by a wide audience. “We wanted a resource written in plain language that anyone could use—providers, survivors, family members, and friends,” she explains. “The words we choose can influence how people understand brain injury and, ultimately, how they understand one another.”

The resulting resource emphasizes that brain injury can occur through both traumatic and non-traumatic causes and highlights the importance of recognizing its potential long-term and evolving effects. It encourages professionals and advocates alike to avoid overly simplistic classifications such as mild, moderate, or severe, and instead to consider the dynamic nature of recovery and adaptation.

Download the resource HERE

From Patient to Research Partner

Kelly Lang

Lang’s commitment to improving care and communication stems from personal experience. In November 2001, she and her three-year-old daughter were involved in a severe automobile accident that left both with lasting, though largely invisible, injuries. Her daughter continues to experience cognitive and emotional effects—processing and learning challenges, fatigue, and anxiety—while Lang manages her own post-traumatic stress and grief.

“The impact of that day is something we live with every day,” she reflects. “Our experience showed me how much communication matters—in hospitals, in rehabilitation, and in recovery.”

Over time, Lang transformed her advocacy as a parent and survivor into broader engagement with healthcare professionals and researchers. Beginning as a peer visitor at the hospital where her daughter was treated, she later became active in state and national brain injury organizations. Those experiences led her to focus on the intersection between lived experience and scientific research.

Today, she serves as a member of the Patient and Caregiver Injury Research Engagement Panel (I-REP) at the Coalition for National Trauma Research (CNTR), which brings together patients, caregivers, and researchers to strengthen trauma-related research. “The projects presented to the panel are diverse,” Lang notes. “It is rewarding to see so many innovative approaches being explored to improve both acute and long-term trauma care.”

Sharing Lessons Through Writing

Lang also chronicled her family’s experience in The Miracle Child: Traumatic Brain Injury and Me, published in 2022. The book, co-authored with her husband, originated from the journals they kept during their daughter’s rehabilitation and subsequent recovery.

“The writing process helped us reflect on communication, advocacy, and the importance of community support,” Lang says. “It also reinforced how essential it is for families to be heard and understood by medical and educational professionals.”

The key messages of the book—effective communication, building support networks, and maintaining resilience—mirror the principles at the core of her ongoing advocacy work.

Centering the Lived Experience

Lang’s contributions exemplify the growing role of patient and caregiver perspectives in trauma research and policy. Through her involvement with CNTR’s I-REP and her leadership within BIAA, she continues to promote the integration of lived experience into the scientific and clinical dialogue around brain injury.

The Communicating About Brain Injury resource reflects that philosophy. Developed through collaboration between organizations, healthcare providers, and individuals with direct experience of brain injury, it emphasizes respect, accuracy, and inclusivity in how the condition is described and understood.

“Every person’s recovery is unique,” Lang emphasizes. “When we communicate thoughtfully, we not only share information—we build understanding, empathy, and connection.”

To learn more about CNTR’s Injury Research Engagement Panel, visit: