IEP Support
One-on-one guidance for families navigating the Individualized Education Program process. We help caregivers prepare for meetings, understand their rights, and collaborate with schools to ensure children with Hunter syndrome receive the educational accommodations and services they need.
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Updates and News
News
BBC Breakfast Oliver "Ollie" Chu
Ollie and Dr. Simon Jones made it on BBC Breakfast for a feature with Fergus Walsh about gene therapy for his MPSII Hunter Syndrome.
News
Boy with rare condition amazes doctors after world-first gene therapy | BBC News
Three-year-old Oliver Chu has astounded doctors with his progress after becoming the first person in the world with his devastating disease to receive a ground-breaking gene therapy.
Press
Project Alive Launches "Hunter Health"
News
VC Star: Takeda Pharmaceutical unveils $170M expansion in Thousand Oaks
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.
This season of giving,
GIVE THE GIFT OF HOPE
Hunter syndrome steals childhoods.
But together, we can give these children...
Time, hope, and a future they deserve.
During this season of giving, give a child a chance to grow up.