When Glen Ridge’s Julie Raskin’s son Ben was born with hyperinsulinism (HI) three decades ago, standard newborn screenings at the hospital failed to detect his condition.
“[Ben] had some symptoms that seemed strange to me and to my husband, and they weren’t picked up by anyone at the hospital where he was born,” says Raskin, citing Ben’s initial eating pattern. “I went home with kind of a sinking feeling, really worried.”
After a week of concern and hospital visits, Ben was diagnosed with Congenital Hyperinsulinism, a rare condition that results in low blood sugar or hypoglycemia. In newborns, prolonged hypoglycemia can lead to many health concerns and even death.
Over the years, Raskin started connecting with other families and patients affected by the rare disease. It started with an email chain in 1999 to share and track stories and care plans in an Excel spreadsheet. The group grew, and Raskin eventually founded Congenital Hyperinsulinism International (CHI).
“We started working in three areas—research, support and awareness—to improve the lives for people born with this condition,” Raskin says.
Since its founding 21 years ago, CHI has pioneered the Congenital Hyperinsulinism Global Registry, where patients and families can share their stories and contribute to CHI’s own collaborative research network. Their databases are essential to continuing research for on the rare condition.
“We realized, Wow, there’s a lot of power in supporting each other, because we felt so much more equipped to deal with this,” Raskin says.
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