“Did you know that in the old days, they used to remove 98% of the pancreas?!” This quote comes from Dr. Adzick’s imagined future, a world where babies born with Hyperinsulinism (HI) have access to more advanced medications. A world where they no longer endure invasive surgeries or harsh side effects from current therapies. He … Read more
The 2025 CHI Family Conference in Philadelphia happened to be held during a gorgeous stretch of weather. Jennifer Schmitt, CHI’s COO, and I traveled together by car from Glen Ridge, NJ, arriving around noon on October 3, ready to set up at the Philadelphia Sheraton University City on the edge of the Penn campus and … Read more
A recently published paper by the CHI research team and the Collaborative Research Network (CRN) members, “Real-world experience with the use of diazoxide among people living with congenital hyperinsulinism and their caregivers,” explored some significant topics related to diazoxide use to treat congenital hyperinsulinism (HI). The paper utilized data from the HI Global Registry and … Read more
I am so sad to share the news that Jim Nestor died last week, on September 10, 2025. His death is a huge loss, first and foremost for his family, and all his loved ones, but also for the congenital hyperinsulinism (HI) family community. It is like yesterday that I got a phone call from … Read more
Read this post in Italian. My name is Martina Sena, and I’m a mother to a beautiful three-year-old girl named Gioia. I’m also an intensive care nurse. You would think my professional background would have prepared me for anything, but nothing could have prepared me for the journey we began when Gioia was just five … Read more