Marie-Claire’s Family Conference Reflections

children at a CHI Family Conference

“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

Share

Report from the 2025 CHI Family Conference in Philadelphia

CHI Staff in Philadelphia at the Family Conference

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

Share

From Diagnosis to Belonging: An Italian Family’s Journey with Hyperinsulinism

Italian family sharing experience of hyperinsulinism

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

Share

An adult hyperinsulinism patient’s reflections

Anna Nicolaou shares her HI experience

The following has been shared by Anna Nicolaou: Within the medical world, there’s positive progress being made on a daily basis for a variety of things such as research and new forms of medicine. However, when it comes to correct diagnosis and transition from a pediatric health care team to an adult health care team, the … Read more

Share