Brett Helsham is the co-founder of the Luka Shai Foundation and the driving force behind its mission to advance research, treatment, and advocacy for ATP6AP2-related diseases and other V-ATPase disorders. As the mother of Luka Shai—diagnosed with ATP6AP2 at just two months old—and his siblings, Max and Kobe, Brett brings an unparalleled level of dedication, insight, and personal experience to her work.

Brett plays a hands-on leadership role in the foundation, overseeing daily operations, research strategy, and community outreach. She is deeply involved in patient advocacy, collaborating with scientists, physicians, and rare disease organizations to drive progress and amplify the patient voice. Beyond advocacy, Brett is also clinically in charge of Luka’s day-to-day care, ensuring that research, treatments, and interventions align with both scientific advancements and personal realities.

Her global perspective was shaped by a worldly upbringing, living in diverse cities such as Hong Kong, Michigan, Ohio, South Korea, Belgium, Italy, and New York City. Brett holds a BFA from NYU and an MFA from the New York School of Interior Design. Brett founded her own firm, Brett Helsham Designs, in 2014. Today, her studio spans residential, hospitality, retail, and commercial design internationally.