News from Project Alive

Keep up to date with our latest news, stories published about us and events. Learn more about our work to find a cure for Hunters syndrome and to connect families to important research and data.

Backpack Health and Project Alive Partner to Advance Hunter Syndrome Research

Thompson’s Station, TN, and Dover, MA​ – August 13, 2019 – ​Backpack Health​ ​and Project Alive​ today announced a partnership aimed to advance research and treatments for Hunter syndrome by utilizing patient reported data. ​With patient consent, the collaboration will provide a repository for aggregated, de-identified data from multiple Hunter syndrome groups in Backpack Health and allow Project Alive to build upon its work in patient outcomes to better serve the Hunter syndrome community. Continue reading.

Contact Project Alive’s public relations representative Barbara Esteves-Moore

Published News

Petland donates $20K to Project Alive

NBC Miami

South Florida Family Raising Funds for Clinical Trial as Son Fights Deadly Syndrome

Tennessean feature

Mom raises $1M to fight disease that could kill her son and she’s not done yet

Atlanta Journal Constitution

Parents race against time to try and save their son Easton


Mom races against time to fund research trial for son’s fatal disease

Broadcast News Features


The Doctors

Inside the NBA

NBA Stars Send Well Wishes to Young Fan


Spread the Positive Podcast about Project Alive and Cars & Cures
Project Alive Founder Melissa Hogan talks to Lightning 100 about our mission


North Carolina Event Oct. 26

The Third Annual Team Finn + Mario’s for Project Alive event is Oct. 26, 2019, from 11 a.m. to close. Live music from 5- 9 p.m., family-friendly events throughout the day like balloon artist, face paint, bounce houses, etc.
Location: Mario’s Italian Restaurant in Matthews, NC. The Team Finn + Mario’s event raised $50,000 the first year and $40,000 last year. Everyone in the Charlotte area is invited to come join the fun.