Offer direct, in-person support to Hunter syndrome families in your community during times of hospitalization, medical travel, or acute need. Tasks may include delivering meals, grocery shopping, picking up prescriptions, or simply being a compassionate presence. Volunteers must be dependable, empathetic, and able to maintain confidentiality.

Location: Local (as needed)
Commitment: On call or periodic
Example: Drop off a meal after a hospital discharge or help with errands when a parent is caring for a sick child. 

Co-facilitate support and recreational sessions for siblings of children with Hunter syndrome. Responsibilities include leading games, facilitating group discussions, and helping create a supportive peer space. Volunteers should enjoy working with children and be comfortable with sensitive topics related to rare disease and family dynamics. Training is provided.

Location: Virtual or in-person
Commitment: 8-10 hours/year
Example: Co-lead group discussions and games for siblings during a quarterly Zoom Sibshop.

Provide hands-on help during Project Alive events such as galas, conferences, awareness walks, or family gatherings. Tasks include setup and teardown, registration, family assistance, and activity facilitation. Volunteers must be organized, energetic, and comfortable engaging with families.

Location: In-person (varies by location)
Commitment: As needed for events
Example: Assist with welcoming families, checking them in, or running a craft table at the annual conference. 

Use your clinical expertise to create practical, user-friendly therapy guides for families, therapists, and educators supporting children with Hunter syndrome. Content may include home strategies, developmental milestones, or equipment recommendations. Volunteers must have pediatric experience and the ability to write clearly for non-specialist audiences.

Location: Remote
Commitment: Project-based (10-15 hours over 4-6 weeks)
Example: Write a "Physical Therapy Tips for Home" guide addressing joint mobility and safety.

Develop accessible, accurate educational materials that explain complex medical and educational topics to families. This may include genetic concepts, treatment options, or navigating the special education system. Ideal for individuals with a background in health sciences, communication, or special education.

Location: Remote
Commitment: Flexible
Example: Design a one-page overview on how IEPs can support children with rare neurodegenerative diseases.

Support our program team by identifying, reviewing, and summarizing current literature related to Hunter syndrome and rare diseases. Research assistants may also help with survey distribution, data tracking, and outcome reporting. This is an excellent opportunity for students, pre-med, or public health professionals.

Location: Remote
Commitment: 2-4 hours/week
Example: Track and summarize findings from new gene therapy research in MPS II.

Help advance rare disease legislation and public policy by participating in letter-writing campaigns, phone banks, or awareness initiatives. Volunteers may also assist in creating advocacy toolkits, coordinating with other rare disease organizations, or attending virtual town halls.

Location: Remote or local
Commitment: Periodic, varies by campaign
Example: Help draft an email template for Rare Disease Day outreach to state representatives.

Edit raw video footage into polished clips that help tell the story of families living with Hunter syndrome. Ideal for those with editing software experience (e.g., Adobe Premiere, iMovie) and an eye for emotional storytelling. May include testimonial videos, interviews, or awareness montages.

Location: Remote
Commitment: Flexible
Example: Edit a 2-minute video featuring a parent’s experience navigating diagnosis.

Help build awareness and community through engaging social media content. Responsibilities include scheduling posts, creating captions, and curating relevant articles or images. Volunteers should be familiar with Facebook, Instagram, and/or X (Twitter), and have a passion for storytelling.

Location: Remote
Commitment: 1-2 hours/week
Example: Draft a month of Facebook posts highlighting facts about Hunter syndrome and family voices.

Overview: The Advocacy & Awareness Advisory Council leads efforts to identify key issues affecting the Hunter syndrome community and to educate families, policymakers, and the public on legislative and regulatory matters. Members help advance policies that improve access to treatment, research, and support services, while also expanding public awareness of MPS II.

What Volunteers Do

• Monitor and respond to legislative and policy developments related to Hunter syndrome and rare diseases
• Identify emerging issues that impact research, care, and family support
• Collaborate with advocacy organizations, policymakers, and rare-disease partners
• Represent Project Alive at conferences, meetings, and awareness events
• Support advocacy campaigns and public education efforts

Who We’re Looking For: 3–5 individuals—including board members, staff, and community leaders—who are well-connected, mission-driven, and bring diverse skills, perspectives, and networks. Experience with nonprofit governance or advocacy work is helpful but not required.

Term Length: Council members serve a renewable one-year term. The Council Chair serves a one-year term with a maximum of three consecutive years.

Overview: The Hunter Syndrome Community Advisory Council works directly with Project Alive’s Community Programs Manager to strengthen engagement, improve support for families, and ensure our programs, resources, and educational materials truly reflect community needs. This council helps us uphold our mission to provide education and resources to families affected by MPS II.

What Volunteers Do

• Provide input on programs, initiatives, and new resources
• Help identify unmet community needs
• Support development of strategies to increase reach and participation
• Serve as a voice for families and individuals living with Hunter syndrome

Who We’re Looking For: A group of board members, staff, and community leaders with strong ties to the Hunter syndrome community. We welcome individuals who bring varied backgrounds, lived experiences, and connections that help guide and strengthen Project Alive’s offerings. Experience in nonprofit governance is helpful but not required.

Term Length: Council members serve a renewable one-year term. The Council Chair serves a one-year term with a maximum of three consecutive years.