The Long Road from the NICU to New Therapies

Congenital hyperinsulinism can turn a newborn’s first days into a medical emergency. The body produces too much insulin, blood sugar can fall to dangerous levels, and every delay in diagnosis or lapse in control can put the developing brain at risk. Even when children survive and receive expert care, families may spend years managing feeding schedules, glucose checks, medications and hospitalizations. In some cases, children undergo life-altering pancreatic surgery that can create new medical challenges. Julie Raskin, CEO of Congenital Hyperinsulinism International, discusses how her family’s experience with the condition led her to build a global, patient-driven effort to advance new treatments, how the organization has forged partnerships with industry to do that, and how it is working to improve the lives of people living with the disease.