Category: Medical and Scientific Advisory Board

Dr. Qian Yuan

Qian Yuan, MD, PhD, Co-Director of the MGH Food Allergy Center and senior clinician in the Division of Pediatric Gastroenterology and Nutrition was appointed the inaugural incumbent of the Demarest Lloyd, Jr. Endowed Chair in Food Allergies in May 2023. Dr. Yuan is an Associate Professor in Pediatrics at the Harvard Medical School. Dr. Yuan is dedicated to advocating for his patients through collaboration with other physicians and scientists in pediatric allergy and immunology, child psychology, nutrition, and feeding and swallowing. Dr. Yuan’s research interests include food allergic diseases that affect the gastrointestinal tracts of children.

Elaine Marchi

Elaine is a researcher specializing in studying NAA10 and NAA15 mutations associated with rare neurodevelopmental disorders, including Ogden syndrome. In collaboration and under the direction of Study Director Dr. Gholson Lyon, she managed the natural history study, the animal model studies and engaged with affected families and scientists worldwide. She has authored more than 70 peer-reviewed publications in developmental disabilities and has spent the past eight years investigating mechanisms in Dr. Lyon’s Laboratory of Genomic Medicine. Now retired, Elaine serves on the advisory board of Ogden CARES, supporting families, contributing to the foundation’s mission, and continuing her advocacy on their behalf. Elaine is also active in her community as a volunteer and maintains a strong interest in art history.

Dr. Nina McTiernan

Nina is a researcher specialising in protein N-terminal acetylation, a protein modification that influences the function of many proteins in the human body. Her research aims to understand how changes in protein regulation affect cellular function and contribute to human disease. As a member of the advisory board, she contributes knowledge of protein biology and NAA10-related disease research in support of the Ogden Syndrome community.

Dr. Kris Gevaert

Kris is an expert in proteome analysis and pioneered a technology for the specific analysis of protein N-termini. One of his research lines focuses on the enzymes that acetylate these protein ends and on understanding how abnormal protein acetylation affects cellular and molecular processes.

Dr. Jochen Kustermann

Jochen is the father of Victoria, who was diagnosed with Ogden syndrome in 2023 at eight months old. He currently serves as the Head of Lab Support at Valneva in Austria, bringing extensive pharmaceutical industry expertise in biochemistry and quality control to the foundation. Through his role on the Advisory Board, Jochen leverages his scientific background to accelerate global research initiatives and help find a cure for affected families worldwide.

Dr. Anja Bühler

Anja is a developmental biologist investigating how the heart forms, functions, and fails. One of her major research projects focuses on uncovering the underlying mechanisms of Ogden Syndrome heart defects using advanced zebrafish and patient-derived induced pluripotent stem cell (iPSC) models to drive future therapeutic insights. As an advisory board member, Anja translates advanced developmental biology into actionable insights to support the Ogden Syndrome community.