[New York, New York, June 24, 2025] – Leading expert in neurobiology and gene therapy joins Jack’s Tomorrow to guide research on PURA Syndrome.

Jack’s Tomorrow is pleased to announce the addition of Michael J. Boland, PhD, to its Scientific Advisory Board. As a leading expert in developmental neurobiology and gene-targeted therapies, Dr. Boland brings unique expertise in support of Jack’s Tomorrow’s mission to accelerate research 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 can lead to developmental delays, low muscle tone (known as hypotonia), seizures (epilepsy), and other health challenges. To date, roughly 750 people have been diagnosed with PURA Syndrome globally, across 60 countries — although this number is growing with increased access to genetic testing. Currently there are no approved treatments for PURA Syndrome.

“We are honored to welcome Dr. Boland to our Scientific Advisory Board,” said Kyle Czepiel, Co-Founder, Jack's Tomorrow. “As a leader in the field of neurodevelopmental genetic disorders, his expertise will be invaluable as we continue to drive innovative research to find treatments and a cure for PURA Syndrome.”

Dr. Boland is a cellular/molecular biologist with expertise in human stem cell technology, transcriptomics, epigenetics, developmental neurobiology, disease model-development, gene-targeted therapy development, and drug discovery. He currently serves as the Strategic Director for Translational and Clinical Research at the Center for Epilepsy and Neurodevelopmental Disorders (ENDD) — which bridges preclinical and clinical expertise at the Perelman School of Medicine, University of Pennsylvania (Penn) and the Children’s Hospital of Philadelphia (CHOP).

At ENDD, Dr. Boland directs research to advance novel gene-targeted therapies to the clinic for STXBP1 and SYNGAP1 disorders, genetic neurodevelopmental disorders that affect how neurons communicate. He shifted his research program from studying other related neurodevelopmental disorders to study STXBP1 after his oldest son was diagnosed with a STXBP1-related disorder shortly after birth. His expertise in this field provides a strong and unique foundation for researching PURA Syndrome, which shares many similarities with STXBP1 and SYNGAP1 disorders.

“I am thrilled to join the Scientific Advisory Board at Jack’s Tomorrow and look forward to working closely with the other talented members of this multidisciplinary team,” said Dr. Boland. “By fostering collaboration and sharing knowledge across related fields, I am confident that we can catalyze scientific breakthroughs to improve the quality of life for people with PURA Syndrome and their families.”