News & Press News Articles Press Releases Newsletters News Articles Article EIN Presswire: "Raising Awareness for Rare Disease Day: Focus on Hunter Syndrome" Read More KGET News: Rare Disease Day: How Hunter syndrome affected a family Read More WTVD ABC Raleigh International Day of People with Disabilities Read More ABC 13 Fight to Find a Cure: Las Vegas Man Explains his Journey with a Rare Disability Read More 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 All Articles Press Releases Press Project Alive’s Kristin McKay Shares Caregiver Perspective at 2025 Newborn Screening Meeting in Minneapolis Project Alive President and Executive Director Kristin McKay spoke at the 2025 Newborn Screening Meeting in Minneapolis, MN, offering a powerful caregiver perspective on the importance of early detection for MPS II (Hunter syndrome). Her remarks highlighted how newborn screening can lead to earlier interventions, clinical trial access, and vital family support. Project Alive continues its national advocacy to add MPS II to newborn screening panels across all states. Read More Project Alive Welcomes New Board Members Project Alive welcomes new board members for 2025: Katey Hoffman, MD, Cory Briddle, Victor Nwaba, Anne and Jeff Denneen, and Aaron J. Byzack. Read More Project Alive Welcomes Dr. Kim Stephens as Emeritus Board Member Read More Project Alive Awards a $60,000 grant to MPS Superhero Foundation and Forms Formal Partnership Read More Project Alive and Action For Aidan partner with $400,000 towards scientific endeavors for Hunter syndrome Read More Project Alive Welcomes New Board Members and Chairman Read More Project Alive Releases Letter to the Hunter Syndrome Community Read More All Press Releases Newsletters Newsletter December 2022 Download October 2022 Download Summer Safety Newsletter Download Summer Travel with Children with Special Needs: Your Realistic, Joy-Focused Guide Download Helping Your Child with Hunter syndrome Retain Skills Over the Summer Summer break can be a challenging time for families of children with Hunter syndrome, as routines change and access to school-based support pauses. This blog post offers simple, meaningful ways for parents and caregivers to help their children retain skills during the summer through play, routine, therapy carryover, and everyday activities. Emphasizing joy and connection, it encourages families to keep learning light, flexible, and rooted in what works best for their child. Download Fostering Sibling Connection During Summer Break Download All Newsletters
