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Paul R. Carney, MD

I am a pediatric neurologist and clinician-scientist, and I serve as Chief Scientific Officer and Medical Director at Sunstone Health, a biotechnology company focused on genetic autism, developmental delay, and epilepsy. In a nutshell, I spend my time trying to understand what rare genetic disorders do to the developing brain, and working to turn that understanding into treatments that actually reach children.

I grew up in Cleveland, Ohio, and stayed close to home for the first part of my training. After my undergraduate degree at John Carroll University, I completed pediatrics residency at Case Western Reserve University and Rainbow Babies & Children's Hospital, then went to the University of Michigan for child neurology residency and fellowship training in epilepsy and sleep. From there I spent sixteen years on the faculty at the University of Florida, five years at the University of North Carolina at Chapel Hill, and five years at the University of Missouri, caring for children with neurologic disorders and building research programs around them. North Carolina is home now, and I am glad to be back.

Most of my career has been spent alongside rare disease communities, including Baker-Gordon syndrome, Angelman syndrome, and Dravet syndrome. Each one taught me the same lesson from a different angle: progress comes fastest when families, clinicians, and scientists are working the same problem together, and when the questions being asked are the ones families actually need answered.

I came to SKDEAS through my friend Kyle Hillman, whose son Rowen has the syndrome, and through Cynthia Lang. Since then I have had the privilege of taking part in the foundation's scientific meeting and the most recent annual meeting. What struck me most was the collaborative spirit in the room, with families, clinicians, and researchers all working the same problem side by side. What I hope to bring to the board is the perspective of a child neurologist and a bench scientist, with attention to the seizures, sleep, and developmental questions that shape daily life for these kids, and to how the science gets moved toward real therapies.

My aim is simple: to help build understanding, better treatments, and ultimately a cure, and along the way to share what we learn and create opportunities that give families reason for hope.

Outside of work, I spend my time with my wife Lucia and our two daughters, and I am usually happiest hiking or in the garden.

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