The 2024 CHI Family Conference at Cook Children’s in Fort Worth, TX took place from Friday, May 31 through Sunday, June 2, 2024. It was a spectacular weekend of learning, sharing, and fun, with speakers and families coming from Europe, Canada, Jamaica, Mexico, Texas, and all around the US. The conference was organized by CHI and Dr. Paul Thornton and his staff at the Cook Children’s Medical Center. You can view presentations from the event here.
We had a marvelous Meet and Greet Friday night at the Hilton Garden Inn, where old friends were able to catch up, and new friendships were forged. Saturday was an educational marathon in Hochberger Auditorium at Cook Children’s where we learned about many important topics in science and medicine, advocacy and new research, and support and awareness.
We also met in small groups and shared our experiences, gaining insights from each other. While the adults learned together, the children had a blast at the wonderful child life facilities, including the music studio, where they recorded the CHI song “Down and Up” with the musician, Janna Pelle. Finally, at the end of the day, Janna and the children performed the song for all attendees.
We spent festive time together Saturday night at Cooper’s BBQ near the Fort Worth Stockyards, enjoying Texas-style barbeque cuisine and catching some of the local traditions.
The Fort Worth Zoo CHI Family Excursion was a blast on Sunday. While zebras, the animal symbol of rare disease were not to be found, we got to visit with a wide variety of animals and birds, including flamingos, elephants, lions, and giraffe, and we discovered the Bongos, beautiful auburn striped animals, that are a rare breed of antelopes.
Below is a slideshow of highlights from the Family Conference; please make sure to continue beyond the slideshow to read more about the topics, breakout groups, and speakers at the conference.
The CHI staff and the Cook Children’s team were joined by additional world-renowned physicians, researchers, congenital hyperinsulinism (HI) specialists, HI family members, and CHI advocacy leaders during the conference.
Conference topics included:
- The history of HI research and treatment
- The genetics of hyperinsulinism
- Diagnosis and current management (including treatments, when management changes are needed, and sick day modifications)
- Meet the pathologist – The role of the study of pathology in surgery for congenital hyperinsulinism
- Meet the surgeon – Focal and Diffuse Pancreatectomies
- Potential future treatments for congenital hyperinsulinism
- HI clinical research at biotechnology companies
- Ask the Experts Panels
- CHI, your advocacy organization
- Support/ Advocacy/Policy/Access
- Awareness/Sharing your stories
- Research – Collaborative Research Network
- HI Global Registry
There were also small break-out groups by special topics:
- How to manage and overcome feeding issues – Dr. Leah Elizondo, Neonatologist
- How to read a research article – Deborah Rafferty, Research Project Coordinator
- Managing HI at school
- Coping with the stress of parenting a child with a rare disease
- Living with HI as a teenager
- Living with HI as an adult
- Special needs and HI
- Grandparents group
- Dads group
And Breakout groups by HI subtype:
- Diazoxide-Responsive Diffuse
- Diffuse Non-Diazoxide Responsive
- HI/HA
- Focal
Confirmed Speakers included:
- Irene Castaneda-Sanchez, MD, Medical Director, Pathology at Cook Children’s Medical Center
- Antonia Dastamani, MD, Pediatric Endocrinologist at Great Ormond Street Hospital, London
- Diva D. De León-Crutchlow, MD, MSCE, Chief of the Division of Endocrinology and Diabetes and Director of the Congenital Hyperinsulinism Center, Children’s Hospital of Philadelphia
- Dr. Leah Elizondo, MD, Neonatologist at Cook Children’s Medical Center
- Clare Gilbert, RN, Clinical Nurse Specialist at Great Ormond St Hospital, London
- Mansa Krishnamurthy, MD, MSc, Pediatric Endocrinology Fellow at Cincinnati Children’s Hospital Medical Center
- Lauren Lopez, PhD, Registry Director, CHI
- Klaus Mohnike, MD, Pediatric Endocrinologist, Professor at Otto-von-Guericke University Magdeburg
- Kate Morgan, Pediatric Endocrinology Advanced Nurse, Great Ormond St Hospital, London
- Deborah Rafferty, Research Project Manager at Cook Children’s Medical Center
- Julie Raskin, MA, Chief Executive Officer, CHI
- Jennifer Schmitt, Chief Operating Officer, CHI
- Charles Stanley, MD, Founder of the HI Center at Children’s Hospital of Philadelphia and Professor Emeritus of Pediatrics at the University of Pennsylvania Perelman School of Medicine
- Paul Thornton, MB, BCh, MRCPI, DCh, Medical Director of the Congenital Hyperinsulinism Center, Endocrine and Diabetes Program at Cook Children’s Medical Center
- Lisa Truong, CPNP-PC, Nurse Practitioner, Cook Children’s Medical Center
- John (Chip) Uffman, MD, Medical Director, Pediatric Surgery at Cook Children’s Medical Center
Thanks to generous sponsors and donors as noted below, registration for the conference was free for all HI families, patients, doctors, and researchers, including program registration and admission to all conference sessions, dinner on Friday night, lunch and dinner on Saturday, and the optional family outing on Sunday.
