Community Resources

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. 

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

Clinical Trial Support Program

A dedicated program for families navigating clinical trials. We know clinical trial life can be tough but we are here to help. Contact us right away and we will assist in the relocation process to help ease the burden of moving to a new state for a clinical trial. If you are currently in a clinical trial, we can help ensure your needs are met and the process is going smoothly at any stage of the journey.

• Receive guidance through the process of relocating to a new state
• Transfer IEP assistance
• Medicaid and SSI application assistance
• Get connected to other families local to your trial site
• Guidance through the clinical trial process
• Frequent check ins to ensure you feel supported and your needs are met
• PA can anonymously advocate for you with the sponsor company or trial site

Enroll in clinical trial support program

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.