News & Press News Articles Press Releases Newsletters News Articles Article Spectrum News 1: South Bay Family Races Clock to Find Treatment Options for Son's Rare Disease REDONDO BEACH, Calif. — Kristin McKay is doing everything she can to keep a smile on her 4-year-old son Charlie’s face. Charlie was born with Hunter syndrome, a rare genetic disease where the body can’t break down certain sugar molecules. Read More Parents Join Together Across Borders to Cure Rare Disease Una Cura Para Adri Puts Over a Quarter of a Million Dollars Towards Project Alive’s Goal to Cure Hunter Syndrome Read More FGCU students need your vote for #MyGivingStory The students created a video that could win up to $10,000 for Project Alive. But they need votes to win. Check out their video, share it on your social media and vote! Read More Car event creates community for Project Alive families The second annual Cars & Cures Car Show brought together more than 70 car collectors of all kinds along with community members to support Project Alive in its effort to find a cure for Hunter syndrome. Read More 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 Howell and Florida Gulf Coast University students for a panel discussion and screen of the documentary Boys with Bigger Hearts at FGCU Oct. 18. Read More Petland donates $20K to Project Alive Petland has provided Project Alive with a check for $20,000 to help fund clinical trials. Petland stores in Southern Florida, along with Petland, Inc., raised money through donations and drives in September. Read More Mark Cuban donates $250,000 to fight against rare disease Read More All Articles Press Releases Press Project Alive Releases Letter to the Hunter Syndrome Community Read More Project Alive's Inaugural Hunter Syndrome Family Fair and Casino Night Raises $68,000 for Research and Support Programs Read More Project Alive Welcomes Seven Members to the Scientific Advisory Board Project Alive, a Hunter syndrome research and advocacy non-profit organization, announces the addition of the Scientific Advisory Board. Read More Project Alive Welcomes New Board Member, Adam Haas Project Alive, a non-profit organization dedicated to research and advocacy for MPS II, or Hunter syndrome, is pleased to announce the addition of Adam Haas to the Board of Directors. Read More Action for Aidan donates $200,000 to Project Alive This nonprofit, based out of New Hampshire, has tirelessly worked to raise money for Hunter syndrome research over the last four years. Read More Project Alive Welcomes New Board Members and the Addition of Kyle Underwood as VP Project Alive is thrilled to announce the new additions to the 2023 Board of Directors along with a new Vice President Read More 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 Read More All Press Releases Newsletters Newsletter December 2022 October 2022 All Newsletters
