Each year in the United States, approximately 2.8 million people sustain a traumatic brain injury (TBI), and 3.5 million experience an acquired brain injury (ABI). Altogether, 13.5 million Americans live with the long-term effects of a brain injury, many of whom face profound challenges in daily life. Tragically, 1 in 4 individuals affected by brain injuries attempts suicide, often driven by the isolation and inequities in healthcare access that disproportionately impact underserved communities. This crisis is further compounded by a growing number of individuals experiencing brain injury-like symptoms, including a significant proportion of the 17 million people living with Long COVID and the 12 million living with PTSD, highlighting the urgent need for comprehensive support and intervention.
Our Story -
The journey of my daughter, Sarah—a story of resilience, determination, and the power of shared experience. Sarah has been an exceptional student, bright and driven, even as a young girl. But at age 12, her life took an unexpected turn when she suffered a sudden hemorrhagic stroke caused by a genetic defect know as ArterioVenous Malformation (AVM). This hemorrhagic stroke left significant cognitive and physical challenges in its wake, challenges that would shape her journey but never define her. Over the next 17 years, she endured five Gamma-Knife brain surgeries. All of this resulted in a multi-stage acquired brain injury (ABI).
Watching Sarah confront her teen years with a brain injury was heart-wrenching. She would face an unfamiliar and daunting reality, full of various symptoms and challenges, yet she approached each day with courage and grit. My own experience 20 years earlier gave me a unique lens through which to guide her. An accident that left me with a leg amputation and a long-term traumatic brain injury (TBI). Though challenging, it became an unexpected gift—one that allowed me to mentor Sarah through her ABI hurdles. Sarah later told me that this shared journey forged a bond of mentorship between us. But we both understand that mentoring is never one-sided; it is a mutual exchange of purpose and healing that strengthens both the mentor and the mentee.
Early in her recovery, doctors cautioned Sarah against pursuing her dream of higher education. The odds seemed stacked against her. Refusing to surrender her aspirations, we embarked on a 17-year academic journey marked by immense obstacles, including persistent cognitive fatigue that significantly reduced her daily productivity and extended her time in college. But Sarah’s resilience and determination finally paid off when she earned her Master’s degree and, ultimately, her PhD in Psychology, specializing in brain injury and neurorehabilitation—a powerful testament to her strength and perseverance.
While Sarah’s journey through brain injury was marked by many symptoms and trials, one of the most devastating consequences has been her seizures—both focal and grand mal. These episodes often left her exhausted and stripped her of independence, preventing her from driving at times and leaving her to battle the profound loneliness of social isolation. Yet, even in isolation, Sarah turned adversity into insight, devoting herself to the brain injury cause. She also became an expert in social isolation, by dedicating her thesis and dissertation to exploring its impacts and the nuances of social isolation and introverted behaviors.
Sarah completed her doctoral internship and dissertation under incredibly demanding circumstances, crossing the finish line to graduate in 2023. But life tested her once again. An increase in seizure activity after graduation meant she couldn’t drive again or begin her postdoctoral training. For 18 months, she faced isolation once more. Yet, instead of yielding to despair, Sarah channeled her energy into building a successful social and community network.
This period of reflection and resilience gave rise to a renewed purpose—one rooted in lived experience and driven by a shared mission. Drawing on Sarah’s academic expertise in neurorehabilitation and social isolation, and my decades of firsthand experience with brain injury and adaptive sports, we joined forces to build something meaningful for others walking a similar path.
Together, we launched three core initiatives under our nonprofit:
This Self-Help Webspace and the Brain Injury Social Podcast – A digital lifeline filled with tools, lived-experience stories, and expert insight to empower survivors and caregivers wherever they are on their journey.
The “End Social Isolation” Program – A growing set of evidence-based, community-focused therapeutic activities designed to reduce isolation and accelerate recovery through connection, movement, and purpose.
The Brain Injury Life Book – A comprehensive resource for survivors, caregivers, and professionals, blending powerful personal stories with practical guidance to navigate the complex realities of brain injury.
Sarah’s journey is not just one of survival—it is a living testament to the human spirit’s ability to adapt, rise, and give back. Our work was born from challenge, shaped by research, and sustained by purpose. While our lives were redirected by brain injury, our mission now is clear: to ensure that no survivor or caregiver walks this road alone.
But the need is great—and our personal resources are limited. That’s why we’re inviting you to walk with us. Join our mission to end social isolation and help brain injury survivors and caregivers reclaim connection, clarity, and strength.
👉 Visit our Self-Help Webspace & Brain Injury Social Podcast
Adel Shadi
