We Are

Project Alive

Since 2014

projectalive

Fast Facts

1 in 150k male births are affected

Roughly 500 boys diagnosed in the US

There are 4 active clinical trials for MPS II

MPS II added to the RUSP in 2022

Knoxville, TN

This is Hunter Syndrome

Hunter syndrome is a devastating disease with no cure. For most children diagnosed with Hunter syndrome, they will never make it into adulthood. These stories follow a few families in their fight for a cure. Project Alive was built by parents facing these same challenges and our mission is to cure Hunter syndrome. Find out how you can help.

Click the pictures below to meet some of our amazing families. Their stories will show their journey through diagnosis, treatments, and their daily life. We encourage you to get to know our community as every child has a unique journey.

If you are a family affected by Hunter syndrome and would like your own story page, please email kristin.mckay@projectalive.org.

McDonough, GA

Easton