Congenital Hyperinsulinism International (CHI) held the third Congenital Hyperinsulinism Family Conference on June 18th and 19th in San Diego. About 50 people gathered to learn together, share experiences and brainstorm about how to continue to spread awareness about congenital hyperinsulinism (HI) and advocate for people living with HI.
The world’s leading specialists were among the speakers at the conference sharing information on the history of diagnosis and treatment, state-of-the-art treatment and management of HI, the genetic explanations for the condition, and potential new treatments on the horizon. Those attending also learned about current practices at the great centers around the world. There were medical presentations from Dr. Charles Stanley, Susan Becker, and Amanda Lee, of the Children’s Hospital of Philadelphia, Dr. Khalid Hussain and Dr. Dunia Ismail of Great Ormond Street Hospital, Dr. Paul Thornton of Cook Children’s in Fort Worth, Texas, Dr. Morey Haymond of Texas Children’s in Houston, Texas, Dr. Jean-Baptiste Arnoux from The Necker Hospital in Paris, France, and Dr. Kusiel Perlman of Sick Children’s in Toronto, Canada. Dr. David Zangen of Haddassah Hospital in Jerusalem was unable to attend in person but is such a dedicated supporter of HI families that he sent a talk via the Internet for conference attendees to view. HI families gained a greater understanding of the biological basis for the disease and perspectives on treatment options. They were also able to ask the specialists to answer all their questions.
In addition to the medical and scientific information, participants learned what it is like to actually grow up with HI from young people embarking on their own independent lives. John Williams and Rianna Sommers, who presented to the group along with their parents Pam Williams and Amy Sommers, shared their life experiences of living with the condition. Listening to two extremely intelligent, charming, and articulate young people talk with such candor and humor about what they have gone through and where they are going was enormously comforting to the parents of younger children attending. As a parent of a child who is on a similar journey I can say these two young people showered us with hope.
Isabel Calderone and Matt Hopkins of the CHI Board provided a presentation on the CHI Database project. They described in detail this patient information-sharing project that provides HI families with a mechanism for sharing information that helps them learn about realities and outcomes from each other. Endocrinologists attending provided very helpful feedback on the project.
Susan Becker and Amanda Lee provided families with excellent information about managing HI at school and some of the academic challenges that some students with HI face.
Melanie Cohen, Development Director for the HI Center at CHOP, and I spoke on advocacy and fundraising. Our session was an interactive one and all participants, parents, patients, and physicians brainstormed together and came up with great plans for the future.
There were also opportunities for families and speakers to spend time talking and getting to know each other at the Friday night dinner as well as at the other meal times. Overall it was an incredibly worthwhile experience and we look forward to many similar gatherings in the future.
Julie Raskin
Vice President
CHI
