December 2018 Newsletter

CHI is celebrating the two-month anniversary of the HI Global Registry, which will generate new insights into congenital hyperinsulinism (HI), drive new research for treatments and cures, and support the success of clinical trials. We launched October 9, 2018 and already have 120 participants who have contributed invaluable knowledge and details about the experience of living with HI. 

Learn more and join the registry HERE!

Congenital Hyperinsulinism International (CHI) and Cook Children’s hosted the 2018 Congenital Hyperinsulinism Family Conference from July 27-29, 2018, in Fort Worth, Texas and CHI partnered with the Medical School of the National Kapodistrian University of Athens on the 2018 Athens Congenital Hyperinsulinism Family Conference in Athens, Greece, September 25-26.

230 people attended the conferences including kids with HI, their siblings, parents, physicians, researchers, and members of the biotech industry. Participants learned all about HI through presentations from specialists, panel discussions, small group interactive sessions, speed dating with the specialists, the sharing of family stories, and informal time for networking and support. Presenters and participants came from 13 countries. Another 461 people tuned in to our Facebook Live for the “Ask the Experts” sessions, expanding the reach of our conferences in a very significant way. One participant said the most meaningful part of the conference was “hearing from other families about the struggles they go through on a day-to-day basis and knowing we are not the only parents going through the stresses of living with HI.”

Every day with HI is a Roller Coaster… but not every day with HI is ROLLER COASTER DAY! On September 15th, 2018, CHI hosted our first-ever Roller Coaster Day at Luna Park, Coney Island in Brooklyn, NY, and it was a day of pure fun for family and friends!

CHI is delighted to share the Orphan Disease Center of the University of Pennsylvania has just selected Dr. Amanda Ackermann, MD, PhD of the Children’s Hospital of Philadelphia to be the grant recipient for her project: “Vitamin E Supplementation in Hyperinsulinism/Hyperammonemia Syndrome.” Dr. Ackermann will have funding for one year in the amount of $84,020. These funds are made possible by generous CHI donors, the CHI Raring to Go for CHI Team and the University of Pennsylvania which matched the funds. There were six excellent grant proposals submitted from researchers in Europe and the US.

CHI was represented at the 2018 European Society of Pediatric Endocrinology (ESPE) Meeting. With our partner advocates from Germany, Spain, and Austria, CHI raised awareness of HI and hypoglycemia and shared information about the HI Global Registry, and we had conversations with over 200 pediatric endocrinologists from all over the world. We learned of specific issues facing children with HI in many countries around the world, as well learning of the research interests of these professionals. We recruited specialists to work on HI materials in foreign languages.

In October, CHI developed the Pediatric Endocrinology Global Access Survey. With the contacts we have made at international meetings over the last few years, we sent out a survey to learn more about HI treatment access issues in many locales around the globe. To date, we have received 80 responses from pediatric endocrinologists in 43 countries from Africa, Asia, Europe, Australia, and North and South America. The survey remains open, and will guide us as we work with experts around to world to improve access to medication and care around the world.

CHI hosted the 2018 Sugar Soirée on November 17 at Fenway Golf Club in Scarsdale, New York. Emmy Award-winning “CBS This Morning: Saturday” co-host and CBS News national correspondent Michelle Miller hosted the event which was chaired by CHI supporters Thaïs and Marc Stuart. We honored Dr. Lisa States, pediatric radiologist at the Children’s Hospital of Philadelphia, for her work on the study FDOPA PET/CT, which has been integral to the cure many babies and children with HI have received through life-changing surgery. The Stuarts were also honored with an award for their altruism and generosity in the face of loss. Isabel Calderón, mother of an HI child, was honored for her work on patient-powered research, including the HI Global Registry. Funds raised at the Sugar Soirée will support vital awareness to prevent prolonged hypoglycemia which can lead to brain damage and death; research supporting better treatments and a cure, and support for patients including helping them receive specialized treatment, genetic testing, medication, supplies and care for families living with hyperinsulinism; and meetings and conferences for HI families and medical personnel.

CHI Executive Director Julie Raskin presented at the Kongenitaler Hyperinsulinsimuse.V Hyperinsulinism Family Conference in Berlin, Germany. Invited by Ulrike Seyfarth, President of Kongenitaler Hyperinsulinsimuse.V, Julie had the opportunity to learn about the HI landscape in Germany and to introduce the Berliners and others attending the conference to the HI Global Registry. The results are in: closer ties between the organizations and plans to collaborate on the 2019 CHI Family Conference in Vienna and making CHI projects more available to people whose first language is German.