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Several years ago a father approached me, concerned about the care his son was receiving. The son had been in a car accident that left him with severe brain injury. He was placed in a nursing home, and his dad stopped by regularly to check in on him. The father feared his son was being ignored or, worse, left in pain or distress.

 

I could feel the love he had for his son – and his hurt. His boy was so vulnerable.

 

Over the past two decades, I have worked as an academic physician in the field of neuroethics, focused on advancing the care of patients with severe brain injury and bringing the fruits of neuroscience to a very marginalized population. I have chronicled my work, and that of my colleagues, in “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,” which was published by Cambridge University Press in 2015. To write that book, I interviewed more than 50 families who have been touched by severe brain injury. Their stories of incredible highs and lows take them to the edge of endurance. What they have told me would make you weep.

 

Yet now, with the last-minute passage of the 21st Century Cures Act in the prior Congress, there is something more we can do for patients with severe brain injury because it provides US$1.5 billion for brain research. Through the National Institutes of Health’s Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, the 21st Century Cures Act can bring to life additional science for this underserved population.

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