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
February is an exciting time for hyperinsulinism (HI) and rare disease communities, as it marks Rare Disease Month and Rare Disease Day. Rare Disease Day – on or around the leap day (the rarest day of the year!) – has been an opportunity for our community to share their challenges and triumphs, to offer support … Read more
Can personal stories drive change in newborn screening practices? “It’s appalling that the fate of a newborn is in the hands of a postpartum mother who doesn’t understand the signs her newborn is giving her, that he’s not getting the sugar he needs … It shouldn’t be on her to save his brain.” That is … Read more
Today is a special day in the annals of congenital hyperinsulinism (HI) families. It is the 20th anniversary of the very first message sent to members of the Hyperins Yahoo Group. This group provided a method of efficient communication via email for families living with HI. On June 4, 1999, Jim Nestor, the moderator of … Read more