Scientific Advisory Board

Henrik Boye Thybo Christesen, MD, PhD, Denmark

Head of Scientific Advisory Board

Consultant in Paediatrics, clinical professor, MD, PhD. Hans Christian Andersen Children’s Hospital, Odense University Hospital, Odense, Denmark; Institute of Clinical Research, University of Southern Denmark. Chair of the Danish Study Group of Paediatric Endocrinology.

Henrik Christesen is a specialist in paediatrics and specialist in neonatology. In his work he has long experience in paediatric endocrinology, which has provided basis for interdisciplinary research in neonatal endocrinology, especially in hypoglycemia.

This has resulted in 101 peer reviewed articles. Since 2004 he has been the head of a research- and clinical interdisciplinary center for congenital hyperinsulinism in Denmark, where both national and many international patients are treated.

Paul Stephen Thornton, MD, United States

Advisory Board Member

Paul Thornton is the medical director of Cook Childrens Hyperinsulinism Center. He specializes in Endocrinology, Diabetes & Metabolism and Pediatric Endocrinology. He has dedicated his life to researching and treating congenital hyperinsulinsim (HI), and in turn has helped improve the quality of life for countless children. Dr. Thornton’s work is so well respected he was recently named Rare Disease Hero by Rare Disease Communications.

The award recognizes five physicians each year for groundbreaking research and treatment in the rare disease community.

In addition to the Rare Disease Hero award, Dr. Thornton was also recently honored at the 2016 sugar shindig at the Fort Worth Science & History Museum where he was given the Be My Sugar Medical Excellence Award by Congenital Hyperinsulinsim International (CHI).

David A. Weinstein, MD, MSc, United States

Advisory Board Member

Dr. Weinstein serves as professor in the Department of Pediatrics at UConn School of Medicine and director of the GSD Program, a joint venture of UConn Health and Connecticut Children’s. UConn Health is home to the GSD program’s research laboratories while the multidisciplinary team provides comprehensive clinical care at Connecticut Children’s.

Weinstein’s GSD Program is the largest clinical and research program of its kind in the world. Pediatric and adult patients living with the rare, genetic liver disease travel from across the globe for his team’s expert care. Dr. Weinstein specializes in disorders of carbohydrate metabolism with particular focus on glycogen storage disease (GSD), hypoglycemia, and diabetes.

As the director of the Glycogen Storage Disease Program, he manages the inpatient and outpatient care for the largest cohort of GSD patients in the world following over 500 people with this disorder. His patients come from over 49 states and 43 countries to be cared for by him.

He is the recipient of the prestigious international humanitarian award, the Order of the Smile, for helping children around the world with GSD, a recognition shared with Pope John Paul II, Mother Teresa, Nelson Mandela, and Pope Francis, and is inducted into “Rare Disease Research Hall of Fame”.

Dr. David Weinstein and his team at UConn Health have administered to a patient the world’s first investigational gene therapy for potentially deadly glycogen storage disease.