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 stories and experiences and learned what is new in the field from Drs. Paul Thornton, Khalid Hussain, and David Zangen and about the history of the disorder from Dr. Charles Stanley. Dr. Davelyn Hood, a community health physician and HI parent, spoke about her dual role of being a parent to an HI child and a physician. HI parents also contributed with their questions and stories. I spoke about the importance of advocacy in the HI community and the progress we have all been making in raising funds for research and awareness of the disorder.
The physicians, all members of the CHI Scientific Advisory Group and leaders in the field, highlighted some of the advances being made in the world of HI. Current research includes studying long acting octreotide, which is a more convenient delivery system for octreotide, to research into potential new drugs. There is also research being done on the safety of F-Dopa 18 which may lead to more access to PET scanning, increasing the likelihood that those with focal disease undergo pancreatectomies that leave enough pancreatic tissue to prevent diabetes. Research is also underway at CHOP and Cook Children’s on developmental outcomes of patients with HI.
Dr. Thornton highlighted the expansion of services at Cook Children’s, which is now an multidisciplinary treatment center providing HI patients with all the specialty fields needed to treat HI. Dr. Charles Stanley, a leader at the Children’s Hospital of Philadelphia’s Hyperinsulinism Center shared information about a new project of the Pediatric Endocrine Society (PES). The committee working on this project, which includes many members of the Congenital Hyperinsulinism International Scientific Advisory Group, will develop guidelines for blood sugar levels and necessary interventions in the newborn period. The hope is that better guidelines will lead to earlier diagnosis and less neurological damage in patients. CHI considers this to be extremely important work and is very supportive of this project.
Dr. Davelyn Hood gave a very personal account of what it has been like for her to raise a child with HI. Dr. Hood is both an HI parent and physician. While having a medical background made it easier for Davelyn to understand the disorder, she, like most of us, had never heard of HI before her son’s diagnosis. She shared with us her journey as a parent, how being a physician sometimes added extra challenges to HI parenting. Ultimately she has found a wonderful balance and her son is thriving. It was quite a motivating speech leaving us all feeling better equipped to handle the extra responsibilities HI parents have. Dr. Hood’s parting message is “Take each day at a time. Don’t project too far into the future.”
The sharing that went on between HI families was also extraordinary. We have a special bond and an opportunity to connect is always so rewarding. There were also a few adorable children with HI at the dinner meeting and their presence is a great reminder of the work we have ahead of us to ensure that these children all have bright futures. There was also time for parents to speak individually with physicians in a relaxed setting, another invaluable experience. In addition to the physicians who are mentioned above, Drs. Haymond, Levitsky, Steelman, WIllcutts, and Lord were also in attendance and all contributed tremendously to the program.
Sponsors for the evening included Teva Neuroscience and Athena Diagnostics. We are very grateful to our sponsors for making the evening possible.
