Benjamin Lewis

Treasurer

Benjamin Lewis was diagnosed with classical homocystinuria (HCU) via Newborn Screening shortly after birth. Since his diagnosis, Ben has endeavored to manage his condition—maintaining a restricted diet supplemented by medical foods and formulas—and been cared for by a series of world-class specialists. While he has suffered no known complications from HCU, Ben has experienced many of the other difficulties associated with the disorder and the risks that come with HCU are constantly on his mind. He is a long-time patient advocate and Voice of Patient representative eager to push forward meaningful attention and improvements for HCU patients, the HCU community, and the broader rare disease patient population. You can read more of Ben’s patient story here.

As a member of the board, Ben also brings the experience and expertise he has gained from a 13+-year career spanning across the property-casualty insurance and technology industries. Over that time, his roles and responsibilities have primarily cut across product management, innovation and strategy, and business development, and he has worked for both global corporations and startup ventures. Ben holds degrees from Rensselaer Polytechnic Institute and the F.W. Olin School at Babson College. Ben spends his free time testing his patience and luck as a wildlife and astro/aurora photographer, hiking up or skiing down mountainsides in New England and elsewhere, and traveling around the world to new and familiar destinations like Alaska, Scandinavia, and Costa Rica.