IEP Support
One-on-one guidance for families navigating the Individualized Education Program process. We help caregivers prepare for meetings, understand their rights, and collaborate with schools to ensure children with Hunter syndrome receive the educational accommodations and services they need.
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Updates and News
Press
Project Alive’s Kristin McKay Shares Caregiver Perspective at 2025 Newborn Screening Meeting in Minneapolis
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.
Press
Project Alive Welcomes New Board Members
Project Alive welcomes new board members for 2025: Katey Hoffman, MD, Cory Briddle, Victor Nwaba, Anne and Jeff Denneen, and Aaron J. Byzack.
Press
Project Alive Welcomes Dr. Kim Stephens as Emeritus Board Member
Press
Project Alive Awards a $60,000 grant to MPS Superhero Foundation and Forms Formal Partnership
Press
Project Alive and Action For Aidan partner with $400,000 towards scientific endeavors for Hunter syndrome
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Building a Future Together
Hunter Syndrome Community Conference
March 13-15, 2026 | Costa Mesa, CA