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WE BELIEVE

A Cure is Within Reach

Project Alive was founded with the purpose of finding a cure for Hunter syndrome. This is still our primary mission, but we also realize that a cure can come in many forms. That is why it is so important to continue to research and fund promising treatments. And we can never let up with our advocacy until every boy with Hunter syndrome receives the best care available and every child born with this disease can grow up.

Our Stories
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What Is

Hunter Syndrome

Hunter syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects approximately 500 boys in the U.S. and less than 2,000 worldwide.

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Our Resources

How We Support You

Community Resources

Community Resources

Journey into Adulthood

Research Grants

Our Community
Resources

Understanding the challenges and nuances our community faces in their daily lives, we have curated a wealth of resources and tools to guide you along this journey. You will find supports in education, healthcare, federal resources and rights, and so much more. 

Resources
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Navigating
Adulthood

College prep and the transition into adulthood can be a stressful time. We offer resources to families as they transition to a new part of their life and look forward into adulthood and future opportunities. 

  • College application aid 
  • Resume-building webinars
  • Connections with internship partners 
  • Higher education accessibility options 
Resources
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Funding Opportunities
MPS II Research

Project Alive seeks to support research in the Hunter syndrome space that fills critical gaps in current knowledge across basic science, critical care and translational therapeutics to improve the lives of those affected with Hunter syndrome and their families. 

Resources
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Many Ways to Donate

Want to get involved? Donations can be made through our site, mail, phone, and through Facebook and GoFundMe. 

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Our Mission and Vision

The Project Alive Path To A Cure

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Providing Resources

We provide many resources to help you and your family with your journey.

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Advocating for Families

We push for our families to get the treatment and support they need.

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Fundraising for a Cure

With donations and events we raise money and awareness to achieve our goal.

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Supporting Research

With trials and grants we support the research that brings us closer to our cure.

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Getting Involved

Our Events and Conferences

We host and participate in events to raise awareness, promote research, and fundraise to support our cause. Our conferences are a place to participate in panels, hear from speakers, make connections with other families, and enjoy live entertainment. 

Our Events

See What We've Been Up To

Updates and News

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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.
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PRESS
Project Alive Releases Letter to the Hunter Syndrome Community
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PRESS
Project Alive's Inaugural Hunter Syndrome Family Fair and Casino Night Raises $68,000 for Research and Support Programs
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PRESS
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.
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PRESS
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.
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