ARRE Foundation announces hiring of David Bettoun, PhD as first Chief Scientific Officer
The ASXL Rare Research Endowment (ARRE) Foundation today announced the appointment of Dr. David Bettoun as the organization’s first Chief Scientific Officer. Dr. Bettoun brings over 20 years of experience in the biopharmaceutical industry, with a proven track record in drug discovery and development. Most notably, he served as Vice-President of Discovery and Non-Clinical Research & Development at Larimar Therapeutics, where he led the development of innovative treatments for rare neurodegenerative diseases. Under his scientific leadership, Larimar advanced a first-in-class asset from early preclinical stages through IND-enabling studies and into clinical development.
"I am honored to join the ARRE Foundation’s efforts toward improving the quality of life for individuals with ASXL-related disorders,” Dr. Bettoun says. “By enhancing our understanding in all aspects of the ASXL genes and their related syndromes, we not only enable advances in the standard of care but also significantly expand our understanding of the important roles assumed by epigenetics in normal and pathophysiological mechanisms to move the ASXL community closer to the discovery of therapeutics to treat these devastating conditions."
As Chief Scientific Officer, Dr. Bettoun will lead scientific initiatives, foster collaboration in the growing ASXL research community, and drive a strategic research agenda toward development of effective treatments for ASXL-related disorders. “The community of ASXL families and researchers have spent the last two years developing a strategic research plan, and adding a talented scientific leader to our team is the first step in implementing that plan,” says Amanda Johnson, Executive Director. “We are excited and fortunate to have Dr. Bettoun and his tremendous experience as a scientist and drug developer joining our growing team.”
“We are confident that Dr. Bettoun’s leadership and vision will significantly enhance our efforts to transform the lives of patients and families affected by these rare genetic conditions,” adds Laura Badmaev, founder of the ARRE Foundation and parent of a child with ASXL1-related disorder (Bohring-Opitz Syndrome). “We are grateful to our community of families and partners that raised and contributed funds to support this critical investment in our research program and leadership capacity.”
Dr. Bettoun holds a PhD in Physiology from McGill University and has completed postdoctoral training at the Weizmann Institute of Science and Eli Lilly, where he worked on leukemogenesis and transcriptional regulation. He has also served as a strategic advisor and consultant, guiding R&D strategies across various therapeutic areas with a focus on mechanistic studies, biomarker-based patient stratification and innovative clinical development plans.
About the ARRE Foundation and ASXL-related disorders: The ARRE Foundation was established in 2018 as a parent-led patient advocacy organization dedicated improving the quality of life for families living with ASXL-related disorders through research and education. ASXL-related disorders are rare, multi-system neurodevelopmental disorders caused by pathogenic variants in the ASXL1 (Bohring-Opitz Syndrome), ASXL2 (Shashi-Pena Syndrome), and ASXL3 (Bainbridge-Ropers Syndrome) genes with a high burden on patient and caregiver quality of life. An estimated 500 individuals are diagnosed globally with many more living undiagnosed. Common features of these disorders on a wide spectrum of severity include developmental delay, intellectual disability, feeding difficulties, severe constipation, orthopedic complications, seizures, sleep disturbances, and challenging behaviors. While research interest in ASXL-related disorders is growing rapidly, there remains little understanding of the natural history or mechanisms of disease and there are no known treatments or standards of care.
