Project Alive’s Kristin McKay Shares Caregiver Perspective at 2025 Newborn Screening Meeting in Minneapolis

April 17, 2025

Project Alive proudly recognizes Kristin McKay, President and Executive Director, for representing the Hunter syndrome community at the 2025 Newborn Screening Meeting, held earlier this week at the University of Minnesota in Minneapolis, MN.

Kristin was invited to speak on a panel to share the caregiver perspective on the critical importance of newborn screening for MPS II (Hunter syndrome). Her heartfelt message emphasized how early detection can change the course of a family’s journey—opening the door to earlier interventions, access to clinical trials, and critical support services.

“As a parent of a child with Hunter syndrome, I know firsthand the difference early diagnosis can make,” said McKay. “It’s not just about treatments—it’s about giving families time, options, and hope.”

Project Alive continues to lead national advocacy efforts to add MPS II to newborn screening panels in every state. Through education, community building, and collaboration with healthcare professionals and policy leaders, Project Alive is working to ensure no family faces this diagnosis without a path forward.

To learn more about Project Alive’s advocacy work and how you can support newborn screening for MPS II, visit www.projectalive.org.