Julie Raskin Many parents of children with congenital hyperinsulinism (HI) have concerns about child development– with good reason. Children born with the condition are at risk for developmental issues due to the potential for neurological damage resulting from prolonged hypoglycemia. Fortunately, with the right interventions many children with developmental lags make tremendous strides. At the Congenital Hyperinsulinism … Read more
A research seed money fund in the amount of $50,000 has been established at NORD for the study of congenital hyperinsulinism (HI). The fund provides $25,000 for two years for a scientific, pre-clinical research study related to the diagnosis and/or treatment of congenital hyperinsulinism in neonates or children. The deadline for submission is May 4, … Read more
I received the following update from the CHOP Hyperinsulinism Center on the diazoxide that many of you have written about with concerns. This is what was shared with me: “Yesterday a TEVA Quality Assurance Auditor gave the following explanation for the questionable diazoxide batch: – There is no official recall of this batch, which is … Read more
During the Fourth Congenital Hyperinsulinism Family Conference to take place March 17th and 18th at the Children’s Hospital of Philadelphia (CHOP), tweens and teens with HI and their siblings will produce a show that will be broadcast to pediatric patients at CHOP. A gift from the Ryan Seacrest Foundation for a recording studio known as … Read more
If you had one extra day in a given year, how would you spend it? Last week there was just such a day, and along with 110 other people I attended a fantastic party: the Congenital Hyperinsulinism International (CHI) Very Special Cocktail Party in Glen Ridge, New Jersey. Yes, the day I’m talking about is … Read more