KIDS DC Blog

Welcome to the official KIDS DC blog – a space where young advocates, families, and supporters can share their stories, learn about healthcare advocacy, and stay connected with our growing community!

What You'll Find Here

Our blog will feature a variety of content designed to inform, inspire, and connect our community:

• 🎯 Advocacy Stories: Real experiences from young advocates who are making their voices heard in healthcare settings
• 👑 Leadership Spotlights: Get to know our team members and learn about their unique journeys
• 🔬 Research Updates: Information about pediatric research opportunities and how young people can get involved
• 🎉 Event Recaps: Highlights from our community gatherings, workshops, and advocacy activities
• 📚 Educational Resources: Tips, guides, and resources for effective healthcare advocacy

Join the Conversation

We believe that every young person's healthcare experience matters. Whether you're a patient, sibling, family member, or ally, your perspective is valuable. We encourage you to:

• Share your own advocacy experiences with us
• Suggest topics you'd like to see covered
• Connect with other young advocates in our community
• Subscribe to our newsletter for the latest updates

Together, we can ensure that young voices are heard and valued in pediatric healthcare. Welcome to the conversation!

Meet Paige Meisner, the inspiring president of KIDS DC who brings both scientific expertise and personal passion to pediatric healthcare advocacy.

Academic Journey

Paige is currently pursuing her graduate studies at the University of Maryland (UMD), where she focuses on developmental biology. Before joining UMD, she completed her undergraduate education at North Carolina State University (NCSU), where she developed a strong foundation in biological sciences.

Research & Advocacy

Her background in developmental biology gives her unique insights into pediatric healthcare challenges. Paige understands how crucial early developmental stages are for lifelong health outcomes, and she brings this scientific perspective to her advocacy work.

Personal Life

When she's not advocating for young patients or conducting research, Paige enjoys:

• 🌍 Traveling: Exploring new places and cultures fuels her creativity and broadens her perspective on global healthcare challenges
• 🐱 Pet Care: She shares her home with two beloved cats who provide companionship during long study sessions
• 🐸 Unique Pets: Her pacman frog adds an element of fun and wonder to her daily routine

Leadership Philosophy

"Every young person deserves to have their voice heard in healthcare decisions that affect them. My role is to create platforms and opportunities for these voices to be amplified," says Paige.

Her combination of scientific training, leadership skills, and genuine care for young advocates makes her an ideal president for KIDS DC. Under her leadership, the organization continues to grow and make meaningful impacts in pediatric healthcare advocacy.

The iCAN Summit 2025 promises to be the most impactful gathering of young healthcare advocates yet! Taking place July 11-17, 2025, in beautiful Montreal, Canada, this event will bring together passionate young people from around the globe.

What to Expect

• 🎯 Advocacy Training: Workshops on policy engagement, storytelling, and effective communication
• 🔬 Research Collaboration: Sessions on participating in pediatric research and advisory boards
• 🤝 Networking: Connect with young advocates from different countries and backgrounds
• 🎤 Speaking Opportunities: Share your story and learn from others' experiences
• 🌍 Global Perspectives: Learn about healthcare challenges and solutions worldwide

Scholarship Opportunities

KIDS DC is committed to ensuring that financial barriers don't prevent anyone from attending. We offer:

• Full conference registration scholarships
• Travel expense support for qualified applicants
• Accommodation assistance for those in need
• Special support for international participants

Travel Information

For international participants:

• Visa/eTA: Most visitors to Canada need either a visa or an Electronic Travel Authorization (eTA)
• Documentation: Ensure your passport is valid for at least 6 months beyond your planned departure
• Health Requirements: Check current health and vaccination requirements

How to Apply

Applications for the summit and scholarships are now open! Visit the iCAN website or contact us for more information. Early applications are encouraged as scholarship funds are limited.

This summit is more than just a conference – it's a chance to be part of a global movement of young people working to improve pediatric healthcare for everyone.

Young people are not just the subjects of pediatric research – they can and should be active partners in shaping the research that affects their lives and healthcare experiences.

Ways Young People Can Engage in Research

🏛️ Advisory Boards

Many research institutions now include young people on their advisory boards. These roles allow youth to:

• Review research proposals from a patient perspective
• Provide input on study design and methodology
• Ensure research questions are relevant and meaningful
• Help researchers understand the youth experience

🔬 Study Participation

Beyond being research participants, young people can contribute by:

• Helping design age-appropriate materials and procedures
• Providing feedback on informed consent/assent processes
• Suggesting improvements to recruitment strategies
• Advocating for youth-friendly research environments

📋 Policy Development

Young advocates are influencing research policy by:

• Participating in FDA advisory committees
• Contributing to regulatory guidance documents
• Advocating for inclusive research practices
• Promoting transparency in research communications

Real Impact Stories

KIDS DC members have already made significant contributions to pediatric research:

• Served on hospital IRBs (Institutional Review Boards)
• Participated in NIH advisory panels
• Influenced clinical trial design for pediatric medications
• Advocated for more age-appropriate research tools

Getting Started

Interested in getting involved in research? Here's how to start:

1. Connect with KIDS DC to learn about current opportunities
2. Reach out to research institutions in your area
3. Attend conferences and networking events
4. Share your story and expertise with researchers

Remember: your lived experience is valuable expertise that researchers need to hear. By participating in research, you're helping to ensure that future studies are more relevant, effective, and youth-centered.

Rare Disease Day 2025 is approaching, and this year we're focusing on the power of patient stories in advancing understanding and treatment of rare conditions, particularly in the exciting field of cell and gene therapy.

About Rare Disease Day

Rare Disease Day takes place on the last day of February each year. It's a globally coordinated movement that:

• Raises awareness for rare diseases and their impact on patients' lives
• Advocates for equitable access to diagnosis, treatment, and care
• Connects patients, families, caregivers, and advocates worldwide
• Promotes research and innovation in rare disease treatments

Focus on Cell and Gene Therapy

This year, we're particularly interested in stories related to cell and gene therapy because:

• These treatments offer hope for previously untreatable conditions
• Patient perspectives are crucial for therapy development
• Families need real experiences to guide their decisions
• Young people's voices can influence future treatment approaches

Types of Stories We're Seeking

• 🧬 Considering Treatment: Families currently evaluating cell or gene therapy options
• 💉 In Treatment: Patients currently undergoing these therapies
• 🌟 Post-Treatment: Those who have completed treatment and can share outcomes
• 🤔 Research Participation: Families involved in clinical trials
• 👥 Support Systems: How families navigate complex treatment decisions

How to Share Your Story

We offer multiple ways to participate:

• Written Submissions: Blog posts, essays, or short stories
• Video Testimonials: Personal video messages (can be anonymous)
• Speaking Opportunities: Virtual or in-person presentations
• Panel Discussions: Join conversations with other families

Privacy and Support

We understand that sharing health information is deeply personal. We offer:

• Anonymous submission options
• Editorial support for written pieces
• Emotional support throughout the process
• Professional review of all content

Impact of Your Story

By sharing your experience, you can:

• Help other families make informed decisions
• Influence future research priorities
• Improve patient support resources
• Advocate for better access to treatments

Your story matters. It can provide hope, guidance, and support to other families facing similar challenges. Contact us to learn more about sharing your rare disease journey.