father and son playing in the grass

What Is

Hunter Syndrome

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.

Learn More

Our Resources

How We Support You

Our Community

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. 

Finn smiling

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. 

  • College application aid 
  • Resume-building webinars
  • Connections with internship partners 
  • Higher education accessibility options 
family of dad and two young boys
Funding Opportunities
MPS II Research

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. 


Many Ways to Donate

Want to get involved? Donations can be made through our site, mail, phone, and through Facebook and GoFundMe. 

three women on stools in event space
boy holding thumbs up
women with microphone speaking

Getting Involved

Our Events and Conferences

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. 

Our Events

October 26, 2024

WonderFall Family Festival

Project Alive and The Hunter Syndrome Foundation are teaming up to host the WonderFall Family Festival on October 26, 2024 at the Rough Rider's Stadium in Frisco, TX! This fall festival will be an inclusive, family friendly event to raise awareness about Hunter syndrome and support the work being done in research, advocacy, and community support by Project Alive.