OUR PATH TO A CURE
Our Mission and Vision
Project Alive exists to find a cure for Hunter syndrome through research and advocacy, and provide education and resources to the Hunter syndrome community.
THE STEPS WE TAKE
Our Path To A Cure
Creating More Hopeful Futures
We provide resources and services for all members of our community through all stages of life.
Advocating for Families
Advocacy is at the heart of our organization. In 2022, the long- term efforts advocacy efforts of the Hunter syndrome community were celebrated as MPS II was added to the Recommended Uniform Screen Panel (RUSP) for newborn screening. With new treatments on the horizon, access to therapies and quality medical care is our top priority.
Fundraising for a Cure
Project Alive was built on grassroots fundraising efforts. Families, supporters, and donors enable us to continue driving research, support families through all stages of this diagnosis, and advocate for a better world for Hunter syndrome families.
Supporting Research
Project Alive provides grants for researchers seeking to advance science and quality of life for those impacted by Hunter syndrome.
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.
PAVING THE WAY
How We Are Making An Impact
Advocating for Access and Action
At Project Alive, advocacy is at the heart of our mission. We work to influence policy, expand access to life-changing treatments, and ensure the voices of those impacted by Hunter syndrome are heard at every level. From Capitol Hill to clinical trial design, we’re fighting for faster, fairer pathways to care.
Driving Research For a Better Future
Project Alive supports groundbreaking research aimed at both scientific advancement and improved quality of life for those impacted by Hunter syndrome. From funding studies that accelerate treatment development to backing projects that address day-to-day challenges, we are committed to a future where individuals with Hunter syndrome can thrive.
Fueling Awareness, Sparking Change
Project Alive is actively working on pushing Newborn Screening. MPS II has been nominated for the US federal Recommended Uniform Screening Panel (RUSP) currently before an advisory committee. We know we must be ready to serve those newly diagnosed families and give them the best possible information to help them on their journey.
Empowering our Community
Project Alive is more than a research-driven organization—we are a lifeline for families navigating Hunter syndrome. We empower our community through education, connection, and support programs that meet families where they are. Whether newly diagnosed or deep in the journey, no one walks this path alone.
Our Mission and Vision
Who We Are
Project Alive is a leading force in the fight against Hunter syndrome, uniting families, researchers, healthcare professionals, and industry to improve lives and advance toward a cure.
Our Mission
Project Alive exists to find a cure for Hunter syndrome through research and advocacy, and provide education and resources to the Hunter syndrome community.
Our Vision
We envision a world where every individual with Hunter syndrome has access to curative medicine.
Our Impact
🧬 Advancing a Cure
We invest in research that improves medical treatment and moves us closer to a cure. From funding critical studies to educating providers, we are driving scientific progress for a better future.
📢 Advocating for Access
We work to expand access to early diagnosis and life-improving treatments. Our advocacy efforts aim to bring newborn screening for MPS II to all 50 states and ensure every family can access the care and therapies they need—regardless of where they live.
💙 Empowering Our Community
Hunter syndrome impacts every family differently. We provide tools, guidance, and emotional support for every stage of the journey—from diagnosis to adulthood and beyond. Whether through one-on-one support or comprehensive online resources, we are here for every step.
🌍 Awareness in Action
Awareness fuels change. Through storytelling, education, and strategic outreach, we raise the visibility of Hunter syndrome, equip medical professionals with knowledge for earlier diagnosis, and engage the public in our mission to cure this disease.
Our Promise
We welcome families newly diagnosed with Hunter syndrome.
We walk beside those navigating daily challenges.
We hold space for those grieving unimaginable loss.
We honor every child and adult affected—and we fight for each one.
Together, we are building a future where a cure is within reach.