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 [email protected].
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.
Your Resources
Accommodating Behaviors in the Classroom & Clinic, Presented by Julie Eisengart, PhD, LP
Julie Eisengart, PhD, LP, the Associate Professor of Pediatrics of the Neurodevelopmental Program in Rare Disease at the University of Minnesota, presents on Accommodating Behaviors in the Classroom & Clinic at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.
Therapy for Neurodegenerative Disorders, Presented by Lauren Newhouse, OTD, OTR/L, SWC
Lauren Newhouse, OTD, OTR/L, SWC, a pediatric occupational therapist, presents on Therapy for Neurodegenerative Disorders at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.
First Aid, CPR, and Water Safety Webinar with NTX CPR
Hunter Syndrome 101
STUDY: Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience
Project Alive has funded the "Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience" study. The study survey will be live soon. Please stay tuned for the study link. The attached file is the official study poster presented at WORLDSymposium in February, 2024.
IEP Workshop
This workshop discusses all things IEP. Experienced IEP advocate, Lindsay Vose, presents a step by step guide to IEPs.
IEP Workshop Slides
Federal Education Rights
Speech or Language Impairment Eligibility
MPS II Active Clinical Trials
This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.