Project Alive President and Executive Director Kristin McKay spoke at the 2025 Newborn Screening Meeting in Minneapolis, MN, offering a powerful caregiver perspective on the importance of early detection for MPS II (Hunter syndrome). Her remarks highlighted how newborn screening can lead to earlier interventions, clinical trial access, and vital family support. Project Alive continues its national advocacy to add MPS II to newborn screening panels across all states.

Project Alive welcomes new board members for 2025: Katey Hoffman, MD, Cory Briddle, Victor Nwaba, Anne and Jeff Denneen, and Aaron J. Byzack.

Project Alive, a Hunter syndrome research and advocacy non-profit organization, announces the addition of the Scientific Advisory Board.

This nonprofit, based out of New Hampshire, has tirelessly worked to raise money for Hunter syndrome research over the last four years.

Project Alive, a non-profit organization dedicated to research and advocacy for MPS II, or Hunter syndrome, is pleased to announce the addition of Adam Haas to the Board of Directors.

Project Alive is thrilled to announce the new additions to the 2023 Board of Directors along with a new Vice President

The Project Alive Board is pleased to announce that Kristin Stockin has been hired as Executive Director of Project Alive

Project Alive is pleased to welcome five new board members: Dave and Julie Ferrulo, Nathan Grant, Elizabeth Snarey, and Kyle Underwood.

Cyclists on a 1200-mile journey across four states to raise awareness of and funds for Hunter syndrome and Project Alive, cycling through North Carolina, South Carolina, Georgia and Florida.

The safety study is a necessary first step in the process of a gene therapy drug trial.

Dr. Kim Stephens became just the second president of Project Alive in February 2021

Dr. Kim Stephens, president of Project Alive, gives an update and review of the accomplishments of the organization in 2019.