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💙 Our 2026 Mission: Getting Tilyn to CHOP & the United Leukodystrophy Foundation Conference

We are a small family navigating a nano-rare, progressive disease that very few understand — TUBB4A / H-ABC Leukodystrophy. This condition slowly disrupts the communication between Tilyn’s brain and body, affecting his mobility, speech, and overall independence over time. There is no cure — only learning, advocacy, and doing everything possible while time allows.

That is why 2026 is so important for us.

✨ Why These Trips Matter

In May 2026, we hope to attend the TUBB4A / H-ABC Family Conference at Children’s Hospital of Philadelphia (CHOP). This is one of the few places in the world where families affected by this exact condition can gather alongside leading Leukodystrophy specialists.

At CHOP, Tilyn will:

• Participate in care planning and consultations
• Connect with physicians and experts who understand this nano-rare disease
• Gain access to education, resources, and possible pathways such as future drug trials
• Be surrounded by other children living in bodies like his — something that deeply matters

In June 2026, we also hope to attend the United Leukodystrophy Foundation Conference near Chicago. This conference brings together families across the Leukodystrophy spectrum to share education, support, and lived experience.

When we attended previously, it changed everything.

We gained:

• Knowledge that helped us enroll Tilyn in programs and supports
• Education that directly impacted how we manage his care
• Advocacy connections with people willing to listen and help
• And most importantly — Tilyn thrived being around peers who understood him without explanation

For a child whose world is shrinking physically, belonging matters.

🎯 Our Fundraising Goals (Tiered)

✅ 

First Goal: $6,200 — CHOP Trip

This will cover:

• Travel & airline tickets
• Hotel stay
• Food & incidentals
• Conference-related costs

Reaching this goal allows us to attend the CHOP TUBB4A/H-ABC Family Conference and begin deeper care planning with experts who understand Tilyn’s exact diagnosis.

🌟 

Second Goal: $12,500 — Both Conferences

If we reach this amount, we can also attend the United Leukodystrophy Foundation Conference in June.

Together, these trips give us:

• The most current education available
• Community support that doesn’t exist locally
• Guidance on what may come next (including breathing, endocrine, and progressive care concerns)
• Tools to advocate better — not just for Tilyn, but for others walking this path

💛 Why We’re Asking for Help

Without these trips, we risk losing access to:

• Critical education
• Expert insight into Tilyn’s specific disease progression
• Community that understands the urgency and reality of Leukodystrophy

Local resources are limited. This is where families like ours go to learn how to survive — and how to keep going with purpose and hope.

We can’t do this alone.

🙏 How You Can Help

• Donate if you’re able — every amount truly matters
• Share our fundraiser to help it reach the right people
• Pray for safe travel, wisdom, and the right connections

 

Even if you can’t give financially, sharing our story helps more than you know.

Thank you for standing with us as we fight for Tilyn’s future — one step, one connection, one act of kindness at a time. 

#LeukodystrophyAwareness #TUBB4A #TilynTough #FaithForward