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Youth Lived Experience Advisory Board (YLEAB)

🚀 About the Program

The YLEAB is your chance to step into a leadership role and help shape the future of TAPC. This brand-new initiative is all about amplifying youth voices with lived experience. We believe that those who live with rheumatic disease every day should be the ones guiding the programs, decisions, and strategies that impact their community. If you’re ready to collaborate, speak up, and create change then you’re in the right place.

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💥 Applications close: September 15th, 2025
📅 Interviews will take place in September
🧡 This is a volunteer position

The 2024 YLEAB Project

Dear Friend! A Book by Take a Pain Check and the Youth Lived Experience Advisory Board

Created by the 2024 YLEAB team, this book brings together the voices of four young individuals with lived experience of rheumatic conditions. Exploring different experiences and providing thoughtful advice, they share what it’s like to grow up while managing a chronic illness.

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The book is divided into four key age ranges: 0–12, 12–17, 17–25, and 25+. Each explores the distinct challenges and transitions that come with living with a rheumatic condition during these life stages. From childhood to adulthood, these young individuals offer insight, support, and empowerment for others on similar journeys.

 

Led by Kriston Steward, the 2024 team features heartfelt contributions from Anna Samson, Isabella Boles, Klaudia Ivancic, and Mackenzie Wilke.

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Anna Samson

2024 YLEAB Member

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Isabella Boles

2024 YLEAB Member

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Klaudia Ivancic

2024 YLEAB Member

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Mackenzie Wilke

2024 YLEAB Member

👥 Who Can Join?

We’re looking for youth aged 14–29 from around the world who live with a rheumatic disease. No experience in advocacy? No problem, just bring your lived experience, passion, and willingness to be part of a team.
👉 If you're under 18, we will ask a parent or guardian to sign a consent form before you're officially onboarded.

🎯 What You’ll Do

As a member of the YLEAB, you'll play a key role in:

💡 Shaping TAPC's Mission

Bring your ideas, your insights, and your story to help define what TAPC does next. Your voice matters here.

🧠 Strategic Planning

Give feedback on new programs, suggest improvements, and help us build resources that actually reflect what young people with rheumatic diseases need.

🌍 Spreading Awareness

Take part in awareness events, create content, and help run campaigns that educate and inspire.

🧭 Leading Projects

You’ll work with fellow board members on one group project each year. You’ll get to lead, collaborate, and make something amazing together.

📣 Sharing Your Experience

Whether it's through our blog, a campaign, or discussions at meetings, your lived experience will guide our work and help others feel seen and heard.

🗣️ Advocacy

Use your voice to challenge stigma, raise awareness, and push for policies that support our community. You’ll help us build a world that truly understands what it means to live with rheumatic disease.

🛠️ Resource Creation

Be part of designing tools (like guides, toolkits, and videos) that support others navigating similar health journeys.

📈 Personal + Professional Growth

We’ll support your development with access to trainings, workshops, and leadership opportunities to build your confidence and skills.

📅 Meetings + Commitment

  • Monthly virtual meetings (minimum once a month)

  • Active participation in communications, group chats, and planning

  • 1-year minimum commitment (with the option to renew)

  • Participation in one group project over the year

Note: Lack of engagement may result in removal from the board, as we want to make sure everyone on the team is present, respectful, and committed.

🧩 Board Structure

  • You’ll collaborate with fellow board members and TAPC team members.

  • Small working groups may be formed based on specific projects or interests.

  • Occasionally, external guests may join meetings for strategic planning.

🙌 Expectations + Code of Conduct

We’re all about creating a safe, respectful, and inspiring space. Here’s what we ask of our board members:

  • Confidentiality: Respect each other’s privacy and any sensitive information shared.

  • Respectful Communication: Listen with empathy. Share ideas with kindness.

  • Constructive Participation: Be an active and positive contributor.

  • Compliance: Follow TAPC’s policies and help us maintain a supportive and inclusive culture.

  • Transparency: Let us know about any potential conflicts of interest that could affect your participation.

✏️ Final Note

Joining the YLEAB is a chance to be heard, make an impact, and shape the future of youth advocacy in rheumatology. Whether you want to create something new, lead a campaign, or simply connect with others who understand what you’re going through—there’s a place for you here.
Together, we can challenge stigma, create solutions, and build a community that supports, uplifts, and inspires. Apply now and let your lived experience lead the way.

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