[New York, New York, March 10, 2026] – Medical geneticist and pediatric rare disease researcher joins Jack’s Tomorrow to further clinical understanding and progress to address PURA syndrome.

Jack’s Tomorrow is pleased to announce the addition of Benjamin T. Cocanougher, M.D., Ph.D., to its Scientific Advisory Board. A physician-scientist with a clinical focus on neuromuscular and neurodevelopmental disorders, Dr. Cocanougher brings valuable bench and clinical trial experience that will inform Jack’s Tomorrow’s efforts to find a treatment and cure for PURA syndrome.

PURA syndrome is a rare neurogenetic disorder caused by mutations in the PURA gene. The condition, which was first identified in 2014, can lead to moderate-to-severe developmental delays and learning disabilities, low muscle tone (known as hypotonia), seizures (epilepsy), and other health challenges. To date, roughly 805 people across 64 countries have been diagnosed with PURA syndrome with case numbers expected to grow as access to genetic testing increases. Currently, there is no cure nor approved treatments for PURA syndrome.

“Dr. Cocanougher is a welcome addition to our Scientific Advisory Board,” said Kyle Czepiel, Co-Founder, Jack’s Tomorrow. “He is a dedicated and talented clinical researcher and geneticist whose experience and commitment to helping pediatric patients and their families will help steer the cutting-edge research needed to find treatments for children with PURA syndrome.”

Dr. Cocanougher currently serves as an attending physician, medical geneticist and assistant professor with the Division of Human Genetics at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati’s College of Medicine in Ohio. He leads a research lab focused on understanding the molecular basis of neurodevelopmental disorders, including PURA syndrome, and using those mechanistic insights to develop new precision medicine therapies. To date, Dr. Cocanougher’s research has focused on rare disorders, including PURA syndrome, GPCR-related genetic disorders, Pompe disease and Glycogen Storage Diseases, NFIX-related Malan syndrome, and FGFR3-related skeletal dysplasias. He has served as principal investigator on international industry-sponsored drug trials for skeletal dysplasias and has co-authored more than 20 peer-reviewed publications in basic and translational research, including high-impact articles in Cell, Neurology, and Neuron, among others.

“I’m honored to be a part of the Scientific Advisory Board at Jack’s Tomorrow. The Foundation is forward-thinking and has made tremendous progress in disease modeling and therapy development in a short period, which is difficult to do for ultra-rare disorders. I look forward to working with Jack’s Tomorrow to eliminate barriers to therapy development in order to work towards treatments that improve the quality of life for individuals with PURA syndrome and their families,” said Dr. Cocanougher.

Dr. Cocanougher received his medical degree with a distinction in research from the University of Rochester in New York and was a Gates Cambridge Scholar at the University of Cambridge, United Kingdom, where he earned a Ph.D. in neuroscience. He completed clinical training in pediatrics, medical genetics and genomics at Duke University in North Carolina.