Last Saturday, June 4, Congenital Hyperinsulinism International (CHI) held a dinner meeting in Boston at the Seaport Hotel bringing together families living with congenital hyperinsulinism (HI), leading world experts in the field of HI and other endocrine fields, and representatives from pharmaceutical and genetic testing companies. The meeting was generously sponsored by Teva Pharmaceuticals and Athena Diagnostics.
At the meeting members of the CHI Scientific Advisory Group including Dr. Charles Stanley, Dr. Khalid Hussain, and Dr. Paul Thornton gave presentations on the nature of the disorder, their centers, and current research. There were also updates from Dr. Diva De Leon-Crutchlow, Dr. David Zangen, and Dr. Liliana Burgos. HI patients, parents, and doctors had an opportunity to pose questions to leading experts in the field.
There was also an interesting exchange of ideas between physicians and HI family members. Topics of discussion included research and treatment news, diagnosis, an explanation of the different types of HI, genetics, surgical and medical treatment options, the occurrence rate of diabetes, and the transition to adult care. Young adult patients also addressed the group sharing their experiences of growing up with HI. Parents of HI children also shared their stories of diagnosis and the reality of raising a child with the condition.
The meeting was very international in scope. There were physicians from Israel, England, Canada, Panama, Chile, and Columbia, in addition to physicians from around the U.S. It was fascinating to learn about what is happening at centers around the world. There was also a wonderful dialogue between endocrinologists and families local to the Boston area and those from more distant places.
Matt Hopkins, president of CHI and Julie Raskin, Executive Director, shared information on CHI initiatives including the new CHI project to raise funds for research, the CHI Champion Program, and the CHI International Crisis Program. In addition to being extremely informative, the evening was very enjoyable and there was ample time for informal discussion. CHI is so thankful for all the interest in the evening and the enormous effort put forth by so many to attend the evening.
