Bill > HR270

This resolution designates June 23, 2025, as "Dravet Syndrome Awareness Day" in Pennsylvania, while providing extensive background information about the rare genetic neurological condition. Dravet syndrome is a complex form of epilepsy that typically begins in infancy, characterized by temperature-sensitive seizures that can start between four and twelve months of age and often involve complex medical challenges. The resolution highlights that the syndrome affects approximately 20,000 people in the United States, with only 1 in 16,000 babies born with the condition, and explains that patients face significant medical complications including developmental delays, intellectual disabilities, motor and speech impairments, and a 15-20% mortality rate. The resolution also recognizes the Epilepsy Neurogenetics Initiative at the Children's Hospital of Philadelphia as a Dravet Comprehensive Care Center and emphasizes the importance of awareness, noting that treatment involves a combination of anticonvulsant drugs, cannabidiol, dietary therapy, and supportive therapies like physical and occupational therapy. By officially recognizing Dravet Syndrome Awareness Day, the resolution aims to increase public understanding of this challenging genetic condition and honor the medical professionals dedicated to helping affected children.

Health and Social Services

https://www.legis.state.pa.us/cfdocs/billinfo/bill_history.cfm?syear=2025&sind=0&body=H&type=R&bn=270