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Finn

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

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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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.
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PRESS
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.
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PRESS
Project Alive Welcomes Dr. Kim Stephens as Emeritus Board Member
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PRESS
Project Alive Awards a $60,000 grant to MPS Superhero Foundation and Forms Formal Partnership
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PRESS
Project Alive and Action For Aidan partner with $400,000 towards scientific endeavors for Hunter syndrome
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May 3, 2025 | Chapel Hill, NC

Cure Within Reach Gala

Join us for an unforgettable evening at the Cure Within Reach Gala, a premier event dedicated to advancing research, advocacy, and care for individuals affected by MPS. Hosted at the prestigious Carolina Club in Chapel Hill, NC, this special night will bring together supporters, advocates, and leading experts in the field to fuel hope and progress.

Together, we are bringing a cure within reach.

Get Tickets