A $500,000 investment in the newly established Stephen Nomura Endowed Professorship at the University of Hawaiʻi at Mānoa’s John A. Burns School of Medicine (JABSOM) is helping sustain groundbreaking research into pseudoxanthoma elasticum (PXE), a rare genetic disease that affects the skin, eyes and blood vessels.
Approved by the UH Board of Regents in January 2026, the professorship honors the legacy of UH Mānoa alumni Steven Nomura, remembered for his compassion and dedication to patient care. The endowed fund supports genetics research and graduate training in the Department of Cell and Molecular Biology.
The professorship currently supports Olivier Le Saux, endowed professor of genetics and chair of the department. Hawaiʻi is home to one of only two PXE research centers in the U.S., where Le Saux advances experimental therapies and supports clinical trials in Europe and the U.S.
Understanding PXE
PXE affects an estimated 1 in 25,000 to 50,000 people worldwide. The disorder causes abnormal calcification of elastic fibers, significantly increasing the risk of cardiovascular complications. Though it can have serious consequences, it remains understudied.
It allows us to train graduate students…to become the next generation of scientists.
—Oliver La Saux
Le Saux helped transform PXE from a century-old medical mystery into an active field of research. In 1999, he was part of an intense international race to identify the gene primarily responsible for the disorder.
“We were sprinting to the finish line, shoulder to shoulder,” he recalled. “We were competing furiously but still working together at the same time.”
The breakthrough changed the trajectory for families living with the disease.
“At the time, there was almost no shared knowledge about PXE,” recalled Sharon Terry, whose two children were diagnosed in the 1990s. “Without a genetic explanation, families were left navigating fear and uncertainty on their own.”
Investing in future scientists
For Le Saux, the endowment represents long-term investment in people and discovery.
“This kind of support gives us flexibility,” he said. “It allows us to train graduate students in the Cell and Molecular Biology graduate program at JABSOM to become the next generation of scientists.”
