Kristin Mckay

Kristin McKay is the President and Executive Director of Project Alive, a nonprofit organization dedicated to advancing research and improving treatment options for Hunter syndrome (MPS II). With both personal and professional experience in the rare disease space, Kristin brings a comprehensive understanding of the needs of the Hunter syndrome community and the broader landscape of rare disease advocacy.

Kristin has been involved with the Hunter syndrome community from a young age. Following the diagnosis of her brother Zachary, and later her son Charlie, she developed a long-term commitment to raising awareness and supporting families affected by the condition. Over the years, she has witnessed the evolution of medical approaches to Hunter syndrome—from her brother receiving enzyme replacement therapy after many years without available treatment, to her son undergoing a stem cell transplant in infancy.

Kristin joined the Board of Directors of Project Alive in January 2020, contributing to several key areas including marketing, conference planning, and fundraising. She later served as the organization’s Secretary before being appointed Executive Director in 2022. In this role, she oversees the organization’s strategic direction, program development, and advocacy efforts, working closely with stakeholders across the healthcare, research, and patient advocacy sectors.

Her work at Project Alive focuses on supporting research initiatives, improving access to information and resources for families, and fostering collaboration among clinicians, scientists, and advocates. Kristin’s leadership is informed by both her lived experience and her broader commitment to strengthening support systems for individuals and families navigating rare diseases.

She currently resides in Redondo Beach, California, with her husband Matthew, their son Charlie, and their dog. Outside of her professional responsibilities, she remains active in her local community and school initiatives.

Kristin’s role at Project Alive reflects a strong alignment of personal insight and professional leadership, aimed at driving progress in research, care, and community engagement for those affected by Hunter syndrome.