Julie Raskin A few weeks ago CJ and Kristin Spackeen left their home in Arizona for the East Coast to pursue the dream of having their child treated at the Children’s Hospital of Philadelphia (CHOP). Their story is one of perseverance with a wonderful result. Their son, William, just over two months old returned home yesterday, on … Read more
Saturday Evening, June 23, in Houston, Texas, Congenital Hyperinsulinism International (CHI), in conjunction with the Cook Children’s Hyperinsulinism Center, held a dinner meeting for families affected by congenital hyperinsulinism (HI). It was so wonderful to connect once again with our Texas friends, and fantastic to meet more members of our Texas HI family. We shared … Read more
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