We Are

Project Alive

Since 2015

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
Tennessee
Knoxville, TN

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.