Project Alive

Project Alive exists to find a cure for Hunter syndrome through research and advocacy, and provide education and resources to the Hunter syndrome community.

Project Alive is a nonprofit organization dedicated to improving the lives of individuals and families affected by Hunter syndrome (MPS II). Founded by parents driven to create a better future for their children, Project Alive was built on the belief that families deserve more—more support, more answers, and more progress.

At our core, we are a community. We bring together families, caregivers, researchers, clinicians, and advocates to share knowledge, build connections, and work toward common goals. We understand the challenges that come with a rare and progressive disease, and we are committed to ensuring that no family has to navigate that journey alone.

Our work focuses on advancing advocacy, supporting research, and providing meaningful programs and resources that help families navigate care and stay informed as treatment options and standards continue to evolve. We also work to elevate the voices of patients and caregivers, ensuring they are heard in conversations that shape policy, research, and access to care.

Project Alive is driven by urgency, guided by compassion, and focused on progress. Every effort we make is rooted in the goal of creating a future where individuals affected by Hunter syndrome have access to better treatments, stronger support systems, and greater opportunity for improved outcomes.