Project Alive was founded with the purpose of finding a cure for Hunter syndrome. This is still our primary mission, but we also realize that a cure can come in many forms. That is why it is so important to continue to research and fund promising treatments. And we can never let up with our advocacy until every boy with Hunter syndrome receives the best care available and every child born with this disease can grow up.
Hunter syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects approximately 500 boys in the U.S. and less than 2,000 worldwide.
Understanding the challenges and nuances our community faces in their daily lives, we have curated a wealth of resources and tools to guide you along this journey. You will find supports in education, healthcare, federal resources and rights, and so much more.
College prep and the transition into adulthood can be a stressful time. We offer resources to families as they transition to a new part of their life and look forward into adulthood and future opportunities.
Project Alive seeks to support research in the Hunter syndrome space that fills critical gaps in current knowledge across basic science, critical care and translational therapeutics to improve the lives of those affected with Hunter syndrome and their families.
We host and participate in events to raise awareness, promote research, and fundraise to support our cause. Our conferences are a place to participate in panels, hear from speakers, make connections with other families, and enjoy live entertainment.