About Us

We are Project Alive

We exist to find a cure for Hunter syndrome through research and advocacy, and providing education and resources to the Hunter syndrome community. We are here to give a voice to the families and children touched by Hunter syndrome.

OUR PATH TO A CURE

Our Mission and Vision

Learn More

Providing Resources

From college apps to family support, we are here for you

Advocating for Families

We are ready to give you and your family the support you need

Fundraising for a Cure

Our fundraising efforts help aid the search for the cure

Supporting Research

With our grants and trails we aid in the research process

HUMBLE BEGINNINGS

A History of Research and Hope

Since 2011, we have fought to give children and their family the life and answers that they deserve. We have held true to this mission and continue to serve the community with every resource we have.

Our History

OUR PROMISE TO THE COMMUNITY

We Are Here For You

We welcome and embrace those families who are newly diagnosed. We hold close those families who are journeying alongside us. And we support and comfort those families whose children have passed – never forgetting the impact of their lives and the joy they brought us.

Our Mission

HERE FOR YOU

Meet the Project Alive Team

Get to know the people behind our amazing team at Project Alive and the people that support our cause.

Our Team

Stratham, NH

Aiden C.

Howell, NJ

Aiden M.

Ocean, NJ

Aiden S.

FRIENDS AND FAMILIES

Helping Families Across the Country

Since 2011, we have fought to give children and their family the life and answers that they deserve. We have held true to this mission and continue to serve the community with every resource we have.

Our Stories

See What We've Been Up To

Updates and News

News

Denali Community Update March 2026

News

F.D.A. Faces Upset Over Denials of New Drugs

Agency officials promise fast reviews of new treatments while vowing they will not be a “rubber stamp” for the industry. But patients with rare diseases view recent decisions as signs that the doors are closing on their options.

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"