Young Leaders Advocacy Program | Project Alive

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Young Leaders Advocacy Program

A youth-led initiative empowering siblings and peers of those with Hunter syndrome to become confident advocates. Participants learn how to share their stories, engage with lawmakers, and raise awareness for rare disease issues, building leadership and communication skills that last a lifetime.

program overview

Mission and Meeting Format

Program Purpose

Equip youth (ages 5–18) with the tools, knowledge, and confidence to become powerful advocates for the MPS II community. Each component includes age-appropriate activities tailored by enrollment group.

Who We're For

Siblings, family members, friends, and passionate supporters of those affected by MPS-II.

Meeting Format

Hybrid (in-person and virtual), including workshops, mentorship, and community engagement. One in-person session may coincide with the annual family conference.

core components

Educational Foundation

Foundation-Building

Education on MPS II

Goal: Ensure youth have a foundational understanding of the disease and its impact.

Age-appropriate medical and science education
Animated explainer videos
Sessions led by researchers or clinicians
Family storytelling from those affected

Foundation-building

Policy and Access Education

Goal: Teach youth about healthcare policy and the importance of equitable access.

Interactive lessons on health systems and rare disease legislation
Case studies of real-world policy change
Mock congressional visits

Core Components

Presentation & Advocacy

Self-Advocacy

Telling Your Story

Goal: Help participants recognize the power of their personal story.

Guided storytelling workshops
“My Why” writing exercises
Safe spaces for sharing and peer feedback
Storybook creation for younger participants

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Presentation Practice & Support

Goal: Build confidence in public speaking and self-expression.

Speech writing and delivery coaching
Peer and mentor feedback circles
Advocacy simulations and roleplay
Presentations to family, schools, or local groups

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Letters to Congress: Writing Workshops

Goal: Teach youth how to craft compelling advocacy letters.

Step-by-step writing workshops
Templates and examples of successful letters
Lessons on how Congress works and the impact of citizen input
Optional letter submission to elected officials

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Media Training

Goal: Prepare youth for effective media engagement and responsible social sharing.

Interview roleplay (TV, radio, podcasts)
Social media dos and don’ts
Talking point development
Creating a personal advocacy video

Suggested Program Schedule

Duration

9 month duration lined up with school-year

Monthly Topics

Focused themes (eg, Month 1: Storytelling; Month 2: MPS II Education)

Milestones

Mid-year and end-of-year reflections

Final Project

Individual or group presentation, awareness campaign, or policy portfolio

Outcomes

Skills Gained:

Confidence in advocacy and public speaking
Understanding of rare disease policy and media engagement
Stronger personal identity and storytelling abilities
Real-world advocacy experience and impact

Mentorship:

Monthly check-ins with experienced mentors
Opportunities for shadowing (conferences, virtual meetings)
Leadership development and tracking

Connection & Community:

Team-building and icebreaker activities
Small group collaboration (e.g., awareness projects)
Access to a private online community
Year-end celebration and certificate ceremony

see what we've been up to

Updates and News

View More

footprints inside heart

Project Alive’s Kristin McKay Shares Caregiver Perspective at 2025 Newborn Screening Meeting in Minneapolis

Project Alive President and Executive Director Kristin McKay spoke at the 2025 Newborn Screening Meeting in Minneapolis, MN, offering a powerful caregiver perspective on the importance of early detection for MPS II (Hunter syndrome). Her remarks highlighted how newborn screening can lead to earlier interventions, clinical trial access, and vital family support. Project Alive continues its national advocacy to add MPS II to newborn screening panels across all states.

Project Alive Welcomes New Board Members

Project Alive welcomes new board members for 2025: Katey Hoffman, MD, Cory Briddle, Victor Nwaba, Anne and Jeff Denneen, and Aaron J. Byzack.

Project Alive Welcomes Dr. Kim Stephens as Emeritus Board Member

Project Alive Awards a $60,000 grant to MPS Superhero Foundation and Forms Formal Partnership

Project Alive and Action For Aidan partner with $400,000 towards scientific endeavors for Hunter syndrome