Journey into Adulthood

Project Alive is a powerful voice for children and adults with Hunter syndrome, bringing together families and advocates with researchers, industry, and regulators.

Continuing Support

Approaching Adulthood

Welcome to Project Alive’s Journey into Adulthood, a page dedicated to providing support and resources to teens and adults diagnosed with Hunter syndrome, as well as their caregivers. Understanding the challenges and nuances our community faces when transitioning into adulthood, we have curated a wealth of resources and tools to allow for our teen and adult community to live and lead successful lives. Currently we are focused on the attenuated individuals,  with goals to expand to those with neuropathic MPS II. If you are looking to get more involved in the Journey into Adulthood, please reach out to 

Interested in Mentoring

Fill out our mentorship interest form to be connected by one of our team members. 

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Your Resources

Check back here for these offering in development:

  • Fact Packs
  • Professional development tools and workshops
  • Navigating transition from pediatric to adult  medical care
  • Career and educational pipelines
  • Mentorship
  • Federal resources for health and education
  • IEP workshops 

October 26, 2024

WonderFall Family Festival

Project Alive and The Hunter Syndrome Foundation are teaming up to host the WonderFall Family Festival on October 26, 2024 at the Rough Rider's Stadium in Frisco, TX! This fall festival will be an inclusive, family friendly event to raise awareness about Hunter syndrome and support the work being done in research, advocacy, and community support by Project Alive.