We Are Here For You

Community Resources

Welcome to Project Alive's Community Resources, a page dedicated to providing support and resources to all members of the Hunter syndrome community. 

Continuing Support

Support Made For You

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 support in education, healthcare, federal resources and rights, and so much more. Please check back consistently for new materials and sign up for our newsletter to receive updates on new workshops and webinars. If there are topics you'd like us to cover, please reach out to resources@projectalive.org. 

Check back here for these offerings in development: 

  • Federal healthcare rights 
  • State based resources 
  • National foundations offering applicable services


Helping Hands Project

Project Alive aims to support the Hunter syndrome community, especially in times of need. If you know a community member that has a child in the midst of a long hospital stay, recently lost a loved one with Hunter syndrome, or going through other tough times directly related to their child's diagnosis, you can nominate them to receive support. Project Alive will send a small gift to help out. Typically, we send food gift cards, flowers to memorial services and funerals, gas gift cards, and the like. We are unable to help with bills, rent, or other cash needs. If you'd like to nominate someone, please submit the nomination at the link below.

Helping Hands Project Nomination


IEP Support

Project Alive is pleased to offer a new program that will connect community members to an experienced IEP advocate, free of charge. Please click the link below to request IEP support. We will then connect you to the advocate to gather more information and find the best way to assist you. Your advocate may attend IEP meetings over the phone, walk you through the IEP agreement prior to signing, and offer guidance in preparation of an upcoming annual IEP meeting or emergency IEP meeting. 

Get Connected

Be sure to complete our community survey to be on the list for community outreach, the birthday club, resources, and all important updates and events. 

Sign Up!

Your Resources