RARE Daily

Penn Medicine and CHOP Establishes Center for Epilepsy and Neurodevelopmental Disorders with $25 Million Gift

February 8, 2023

Rare Daily Staff

A $25 million gift from an anonymous donor to Penn Medicine and Children’s Hospital of Philadelphia (CHOP) will establish the Center for Epilepsy and Neurodevelopmental Disorders ENDD, accelerating collaborative research in genetic therapies for neurodevelopmental disorders.

This gift will bolster the efforts of an interdisciplinary group of clinicians and scientists at Penn and CHOP, led by director Benjamin Prosser, and co-directors Beverly Davidson and Ingo Helbig. Prosser is an associate professor of Physiology at the University of Pennsylvania’s Perelman School of Medicine, who adjusted the focus of his research career when his own daughter, Lucy, was diagnosed shortly after birth in 2018 with a rare genetic neurodevelopmental disorder.

“ENDD offers hope to patients and families living with the many challenges of rare, genetic neurodevelopmental disorders,” said J. Larry Jameson, executive vice president of the University of Pennsylvania for the Health System and dean of the Perelman School of Medicine. “This important gift will accelerate the progress of an extraordinary partnership between Penn and CHOP that demonstrates the power of collaboration and a commitment to finding cures. We are incredibly grateful to this donor, whose dedication to the advancement of research in this area is sure to create the launch pad for a new outlook for those diagnosed with these conditions.”

The gift was made in honor of the late television executive Daniel Burke whose son Stephen Burke served on the board of trustees at CHOP.

“CHOP and Penn have systematically invested in integrated care programs for genetic epilepsies and neurodevelopmental disorders,” said Madeline Bell, president and CEO of Children’s Hospital of Philadelphia. “This new center will fill the gap between the tremendous advances in early diagnosis and comprehensive clinical care and the development of new treatments for these patients.”

ENDD will initially focus on developing therapies for disorders related to mutations of the STXBP1 and SYNGAP1 genes – which are linked to abnormal brain function, intellectual disability, epilepsy, and motor and behavioral impairments – with the goal of expanding its efforts to other genetic neurodevelopmental disorders over time.

Photo: Madeline Bell, president and CEO of Children’s Hospital of Philadelphia

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