The following was shared by CHI Development Director Pam Weber-Leaf: CHI had a chance to raise hyperinsulinism (HI) awareness and connect with our peers in the rare disease space all over the Northeast corridor of the United States last month as part of international Rare Disease Day (RDD) 2026 observances. On Feb. 20, I had … Read more
This is a guest blog post from Shohei Matsumoto of the Japan Hyperinsulinism Patients and Families Association (JHIA). “In order to secure support from the government for the challenges faced by families of patients with hyperinsulinemic hypoglycemia, our association submitted a “Request for Research on Hyperinsulinemic Hypoglycemia” to the Minister of Health, Labour and Welfare. … 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
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
Ben Raskin-Gross and Julie Raskin participated in Rare Across America initiative sponsored by the EveryLife Foundation. This initiative empowers advocates to meet with the staff of members of Congress at their local district offices. Ben and Julie shared their personal stories and advocated for issues of great importance for the congenital hyperinsulinism and broader rare … Read more