Parents Join Together Across Borders to Cure Rare Disease
Parents Join Together Across Borders to Cure Rare Disease Una Cura Para Adri Puts Over a Quarter of a Million Dollars Towards…
News from Project Alive
News & Press
FGCU students need your vote for #MyGivingStory
The students at Florida Gulf Coast University have long supported Project Alive, even forming the organization Hunting for a Cure on campus…
Dr. Kim Stephens gives a Project Alive update for 2019
Dr. Kim Stephens, president of Project Alive, gives an update and review of the accomplishments of the organization in 2019.
Car event creates community for Project Alive families
NOLENSVILLE, TN – The second annual Cars & Cures Car Show brought together more than 70 car collectors of all kinds along…
FGCU hosts discussion with Dr. Fu after Hunter syndrome documentary screening
Dr. Haiyan Fu from the University of North Carolina School of Medicine joined Project Alive Vice President Mario Estevez, film producer Joey…
Petland donates $20K to Project Alive
Petland donates $20K to Project Alive
Mark Cuban doantes $250,000 to fight against rare disease
Mark Cuban donates $250,000 to fight against rare disease
Published stories about Project Alive
NBC Miami South Florida Family Raising Funds for Clinical Trial as Son Fights Deadly Syndrome Tennessean Mom raises $1M to fight…
Broadcast features about Project Alive
Charlotte Today: Allison Muedder and Jon Muedder along with their son Finn tell you how you can get involved with Project Alive…
Press Releases from Project Alive
Project Alive Welcomes New Board Members and the Addition of Kyle Underwood as VP
February 7th, 2023 Project Alive, a Hunter syndrome research and advocacy non-profit organization, is thrilled to announce the new additions to…
Action for Aidan donates $200,000 to Project Alive
There is nothing like a parent’s love to turn a hopeless diagnosis into a fight to save the lives of children around…
Project Alive Welcomes New Executive Director
The Project Alive Board is pleased to announce that Kristin Stockin has been hired as Executive Director of Project Alive. Kristin has…
Project Alive Welcomes Five New Board Members
Project Alive, a Hunter syndrome research and advocacy non-profit organization, is pleased to welcome five new board members: Dave and Julie Ferrulo,…
Backpack Health Launches Rare Disease Research Study in Partnership with Project Alive
Patient-Reported Data Survey to Examine and Advance Treatment of Hunter Syndrome Dover, MA – November 19, 2019 – Backpack Health, a free mobile and…
Dr. Kim Stephens becomes second Project Alive president
Dr. Kim Stephens became just the second president of Project Alive in February 2019, taking the reins from founding president, Melissa Hogan,…
Backpack Health and Project Alive Partner to Advance Hunter Syndrome Research
Partnership will provide the scientific community with patient reported data needed to advance treatment and cures Thompson’s Station, TN, and Dover, MA…
Safety studies nearing completion in gene therapy drug trial
The safety studies needed to begin the gene therapy drug trial for a promising cure for Hunter Syndrome are nearing completion, according…
Project Alive president recognized with honors for work in rare disease research advocacy
NASHVILLE, TN – When her son Case was diagnosed with a rare disease called Hunter Syndrome, Melissa Hogan turned her grief and…