A Full Circle Moment: Acceptance into the LETBI Study
By Dede Norungolo
When I learned that I had been accepted into the Late Effects in Traumatic Brain Injury (LETBI) study at Mount Sinai, it felt like a full‑circle moment – one of those rare points in life where past, present, and purpose align in a way that makes perfect sense. The LETBI study focuses on understanding how traumatic brain injury and aging intersect, and what long‑term health and cognitive changes survivors experience. It’s a study that doesn’t shy away from the hard questions, including the unique component of brain banking. Participants are asked to consider brain donation at the end of life so researchers can continue learning long after we’re gone. It’s a profound request, but one that speaks to the heart of why this research matters.
To qualify, participants must have sustained a moderate or severe TBI – or multiple head impacts – and be at least a year post‑injury. I’m more than 26 years out from the car accident that changed the entire trajectory of my life. I’ve lived through the confusion, the rebuilding, the grief, and ultimately the transformation that comes with surviving a brain injury. So, when I was invited to join LETBI, I knew immediately that this was something I wanted to be part of.
Recently, my spouse and I traveled to Mount Sinai in New York to visit the Brain Injury Research Center. I’ll admit, the idea of spending a full day undergoing interviews, questionnaires, “brain games,” a blood draw, and an MRI felt daunting. But the moment I walked through the doors, the research assistant put me at ease. She treated me with such care, respect, and genuine curiosity about my lived experience. Instead of feeling like a subject, I felt like a partner in something meaningful.
Completing the assessments reminded me just how far I’ve come. I’m not the same person I was before my injury – but I’ve built a life filled with purpose, advocacy, and connection. What began as a tragedy has evolved into a career centered on helping others navigate their own journeys with brain injury. Being part of LETBI feels like an extension of that work. It’s a way to contribute to a future where survivors are better understood, better supported, and better equipped to age with dignity.
Saying yes to this study – and even to the idea of brain donation – comes from a place of wanting my experience to matter beyond my own lifetime. If what I’ve lived through can help someone else down the road, then this is exactly where I’m meant to be.
The LETBI study is still open for new participants. If you or someone you know is a TBI survivor and wants to explore the possibility of joining, you can call (212) 241‑5152 to learn more about the process. Learn more about the study.
– Dede Norungolo is a BIASC board member, owner/operator of Reintegrate Counseling, LLC, and brain injury survivor.