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WE BELIEVE

A Cure is Within Reach

Project Alive was founded by families for families, with the purpose of finding a cure for Hunter syndrome. We envision a world where every individual with Hunter syndrome has access to curative medicine. Our path to a cure is simple: Advancing a Cure, Advocating for Access, and Empowering our Community. Join us in giving our kids a chance to 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

Parent & Caregiver
Resources

Project Alive is committed to empowering parents and caregivers navigating the challenges of Hunter syndrome (MPS II). Our "Resources for Parents and Caregivers" page offers medical resources, educational tools, supportive services and more. 

Understanding the challenges and nuances parents and caregivers face in their daily lives, we have curated a wealth of resources and tools to guide you along this journey.  We invite you to explore these resources and become part of our supportive community dedicated to those affected by Hunter syndrome.

Resources
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Living with Hunter Syndrome
Resources for Affected Individuals

Project Alive is dedicated to empowering individuals diagnosed with Hunter syndrome (MPS II) by providing comprehensive resources tailored to their unique needs. Our "Resources for Affected Individuals" page offers medical guides, expert connections, educational support, and other supportive tools. 


We invite you to explore these resources and join our community committed to supporting those affected by Hunter syndrome.

 

Resources
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Provider Resources
Clinicians, Therapists, Educators, Etc.

Project Alive is commited to support the healthcare professionals, therapists, and teachers that work with our community every day. Our "Resources for Providers" page offers educational materials, clinical resources, newborn screening guides, and curated resources for therapists and educators. 

 

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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Advancing a Cure

We support the advancement of science to improve medical treatment and find a cure.

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Advocating for Access

We expand access to quality medical care, including early diagnosis and life improving treatment.

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Empowering our Community

We equip our community with knowledge and resources to navigate all stages of life.

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Hunter syndrome families

Connection

We are an organization created by families, for families. We believe that together we can create a world where every individual with Hunter syndrome has access to curative medicine.

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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