Boston Children’s is a teaching affiliate of Harvard Medical School, where all of our physicians are also faculty. Our clinicians are also involved in research to improve our understanding of Kabuki syndrome and, we hope, discover new treatments. In addition to the core team below, we work closely with specialists in cardiology, endocrinology, immunology, nephrology, nutrition and physical therapy to cover all the needs of our patients.
The team speaks multiple languages including English, Italian, German, French and Mandarin. Interpreter services are available for other languages.
Olaf Bodamer, MD, PhD, FAAP, FACMG, directs the Kabuki Syndrome Program. He came to Boston Children’s in 2015 and established an active research program in genetics and genomics. He sees patients of all age groups with genetic disorders with a focus on Kabuki syndrome and is active in genetics and genomics research, clinical trials and teaching. His research focuses on the application of multiple “OMICS” (genome, transcriptome, methylome, metabolome, microbiome) to understand disease as well as healthy processes like pregnancy.
Bodamer trained in pediatrics in Germany and at Great Ormond Street Hospital in London and in Clinical and Biochemical Genetics at Baylor College of Medicine in Houston. He is member of several editorial and scientific advisory boards and patient advocacy groups.
Emanuela Gussoni, PhD, co-director of the Kabuki Syndrome Program, has done extensive research in diseased muscle, particularly in Duchenne muscular dystrophy. Her laboratory, established at Boston Children’s in 2000, focuses on muscle stem cells and the key regulators that drive them to form mature muscle cells, with the goal of developing new therapies for muscular disorders. Dr. Gussoni obtained her PhD from the University of Milan, Italy in Genetics and Molecular Biology and did a fellowship at Stanford University, Department of Neurology and Neurological Sciences, before coming to Boston Children’s. She served as a permanent member of the Muscular Dystrophy Association (USA) Scientific Advisory Committee from 2006 to 2017.
Christina Hung, MD, FACMG, is lead scientist of the Kabuki Syndrome Program. After training in pediatrics in Austria, she joined Bodamer’s research endeavors at the University of Miami, where she helped identify and characterize novel genes implicated in several rare disorders. She obtained board certification in Clinical Molecular Genetics in 2015, and is continuing her work on rare genetic disorders at Boston Children’s.
Tara Daly, MSc, is the Program Coordinator of the Kabuki Syndrome Program. Daly graduated with a BA in Health Sciences and MS in Community Health Education from Merrimack College. She has worked on the development of multiple research initiatives revolving around improving health in pediatrics.
Adam Tellier, MSc graduated with a BS in Biochemistry and Molecular Biology and MS in Biotechnology and Biomedical Sciences from the University of Massachusetts at Amherst. During his time at UMass Amherst he explored the roles of novel genes in embryonic development.
Julia Thomann, LICSW, is the social worker for The Roya Kabuki Program. Thomann earned her BSW from Skidmore College and her MSW from Columbia University School fo Social Work. She has primarily worked with children and families in the Atlanta area. She most recently worked in a psychiatric residential treatment center providing supportive services to children struggling with behavioral issues. In addition to providing therapeutic services she collaborated closely with local and state agencies to ensure that client's received the appropriate support within their communities upon discharge.
