Give kids with Hunter Syndrome the chance to grow up

We Believe a Cure Is Within Reach

Hunter syndrome (MPS II) is a rare genetic disease that affects less than 500 boys in the United States and 2,000 worldwide. These boys are missing an enzyme used to break down cellular waste. When that waste builds up, it leads to progressive damage throughout their little bodies. Some never develop speech, but some boys learn like a typical child then begin losing skills and what they’ve learned at a young age. They eventually lose the ability to walk, talk and eat. Most do not live to see their teen years.

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. 

Our mission

Project Alive’s Path To A Cure

Providing resources
Advocating for families
Fundraising for a cure
Supporting research
Learn More About Us

Hunter Syndrome affects real families

See Our Stories